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Sample records for carers pcq-c reliability

  1. [Preventing carer burnout].

    PubMed

    de Montety, Isabelle; Moussaoui, Edgar; Baleyte, Jean-Marc

    The issue of the burnout of carers of disabled family members has been raising concern for several years. It is essential to identify the signs of suffering in the carer in order to put in place adapted support which will also be beneficial for the person being cared for. Autism, a disability which has a significant impact on the family circle, is an example of a condition for which providing support to carers is essential.

  2. Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer).

    PubMed

    Rand, Stacey E; Malley, Juliette N; Netten, Ann P; Forder, Julien E

    2015-11-01

    The ASCOT-Carer is a self-report instrument designed to measure social care-related quality of life (SCRQoL). This article presents the psychometric testing and validation of the ASCOT-Carer four response-level interview (INT4) in a sample of unpaid carers of adults who receive publicly funded social care services in England. Unpaid carers were identified through a survey of users of publicly funded social care services in England. Three hundred and eighty-seven carers completed a face-to-face or telephone interview. Data on variables hypothesised to be related to SCRQoL (e.g. characteristics of the carer, cared-for person and care situation) and measures of carer experience, strain, health-related quality of life and overall QoL were collected. Relationships between these variables and overall SCRQoL score were evaluated through correlation, ANOVA and regression analysis to test the construct validity of the scale. Internal reliability was assessed using Cronbach's alpha and feasibility by the number of missing responses. The construct validity was supported by statistically significant relationships between SCRQoL and scores on instruments of related constructs, as well as with characteristics of the carer and care recipient in univariate and multivariate analyses. A Cronbach's alpha of 0.87 (seven items) indicates that the internal reliability of the instrument is satisfactory and a low number of missing responses (<1 %) indicates a high level of acceptance. The results provide evidence to support the construct validity, factor structure, internal reliability and feasibility of the ASCOT-Carer INT4 as an instrument for measuring social care-related quality of life of unpaid carers who care for adults with a variety of long-term conditions, disability or problems related to old age.

  3. The development and validation of a quality of life measure for the carers of people with Parkinson's disease (the PDQ-Carer).

    PubMed

    Jenkinson, Crispin; Dummett, Sarah; Kelly, Laura; Peters, Michele; Dawson, Jill; Morley, David; Fitzpatrick, Ray

    2012-06-01

    Parkinson's disease (PD) can have substantial effects not only on the quality of life of those diagnosed with the condition but also upon the informal carers who provide support and assistance to them. However, to date no well-validated carer specific quality of life measure has been developed for carers of people with PD. This paper documents the development and validation of a PD specific carer quality of life scale. In depth interviews were undertaken with carers of people with PD. The interviews were transcribed and analysed thematically to derive a pool of potential items for the questionnaire. A pilot survey was used to refine the initial version of the questionnaire. A developmental survey was undertaken and the results analysed to produce the final 29-item measure. A validation survey was then undertaken to assess the construct validity and reliability of the measure. Survey results suggest a 29-item questionnaire tapping four dimensions of quality of life (Social and Personal Activities, Anxiety and Depression, Self care, and Strain). Internal consistency reliability was found to be high for all domains. Data completeness was high. Construct validity (assessed by correlations with a generic measure of quality of life) confirmed prior hypotheses. The 29-item Parkinson Disease Questionnaire for Carers (PDQ-Carer) is a short, meaningful quality of life instrument, which taps areas of specific salience and concern to PD carers. Crown Copyright © 2012. Published by Elsevier Ltd. All rights reserved.

  4. From neighbour to carer: An exploratory study on the role of non-kin-carers in end-of-life care at home for older people living alone.

    PubMed

    Pleschberger, Sabine; Wosko, Paulina

    2017-06-01

    A growing number of older people are living in single households. They form a disadvantaged group within society as regards staying at home, most likely towards the end-of-life. It is mainly non-kin-carers who try to fulfil older people's desire for a home death, but very little is known about the challenges they face during their involvement. Getting insight into the engagement of non-kin-carers in the support for older people living alone, and a better understanding of the challenges they have to manage in end-of-life care. Exploratory qualitative design; perspectives of non-kin-carers were collected through personal in-depth interviews ( n = 15) retrospectively. Home care, urban and rural areas in Austria Findings: A slow and subtle transition into care is what characterizes non-kin-care relationships which show differences between friends and neighbours. Towards the end of life, the main challenges emerged around increased physical care needs, issues of decision-making and facing the process of dying. Prior experiences with the latter, which most of the involved carers had, influenced non-kin-carers' steadiness to allow home death and so did reliable formal support, particularly from specialized palliative care teams. Support of older people living alone, in particular until the last stage of life, comes along with multiple efforts. Respectful and supporting relationships between professional carers and non-kin-carers are vital to keep non-kin-carers involved.

  5. Caring for older people. Carers.

    PubMed Central

    Travers, A. F.

    1996-01-01

    Caring by families and friends is the backbone of community care. Carers face physical, emotional, social, and financial problems. They need recognition, information, and support from the health professionals with whom they and the person they care for come in contact. Much information is available to assist carers and to enable their doctors to help them in their caring role. Images p483-a p485-a PMID:8776323

  6. Measuring client and carer perspectives.

    PubMed

    John, A

    1998-01-01

    Speech and language therapists (SLTs) seek to meet the needs of the clients/patients and carers attending therapy. Part of the process of providing appropriate interventions is understanding the areas which the client/patient and their carers perceive as important issues. There is a need to know their views, expectations and desired outcomes if intervention is to be effective. Since the 1980s the National Health Service has placed emphasis on the need to include the views of users of health care in assessing service delivery and the outcomes of care. This paper explores the issues concerning measuring client perceptions, existing approaches to capturing client and carer views and summarises initial work from a pilot project to develop a Client Outcome Measure.

  7. Determinants of carer stress in Alzheimer's disease.

    PubMed

    Donaldson, C; Tarrier, N; Burns, A

    1998-04-01

    To explore the impact of subgroups and individual symptoms of non-cognitive disturbance on the carers of Alzheimer's disease patients. Cross-sectional study using clinically valid scales to assess patient symptomatology and self-report questionnaires to measure carer variables. Old age psychiatry outreach services in South and Central Manchester. 100 patients with Alzheimer's disease living at home and their carers. Subjective burden and distress in carers. Separate statistical analyses were performed for subgroups and individual symptoms of non-cognitive disturbance. For subgroups, multivariate analyses identified depression and behavioural disturbances in patients as significant predictors of subjective burden in carers. Carer distress was predicted by depression, psychosis and cognitive impairments in patients and carer gender. For individual symptoms of non-cognitive disturbance, three features of depression in patients (mood-related signs, physical signs and behaviour changes), walking disruptions and the patient-carer relationship predicted of subjective burden in carers. Variance in the level of carer distress was accounted for by sleep disruptions, hallucinations and mood-related depressive features in patients and carer gender. The findings confirm that the non-cognitive features of Alzheimer's disease are stressful for carers and indicate specific relationships between mood-related and behavioural signs of depression, walking and sleep disruptions and hallucinations in patients and adverse carer outcomes. Patient depression and the mood-related signs of depression in particular were the most consistent and powerful predictors of psychological morbidity in carers. Intervention strategies need to identify and target troublesome behaviours in patients and aim to either change these behaviours or alter the way carers respond to them. Thus, interventions need to be symptoms-rather than service-led and are likely to require multidisciplinary and multi

  8. Action Learning with Young Carers

    ERIC Educational Resources Information Center

    Clark, Elaine

    2004-01-01

    This paper looks at some research conducted with young carers and a multidisciplinary team of professionals as co-researchers. In this paper I suggest that action learning is a natural activity which occurs when programmed knowledge is combined with questions from colleagues/learners with different perspectives to create a shift in perception in…

  9. Peer support for carers: a qualitative investigation of the experiences of carers and peer volunteers.

    PubMed

    Greenwood, Nan; Habibi, Ruth; Mackenzie, Ann; Drennan, Vari; Easton, Nicky

    2013-09-01

    Being a carer of someone with dementia can be rewarding and also challenging. Volunteer peer support schemes for carers are being introduced, little is known about either their impact on carers and volunteers or about volunteers' and carers' experiences. This study investigated peer volunteer and carer recipient experiences of a peer support service. Thematic analysis of 13 in-depth interviews with 9 carers and 4 peer volunteers revealed that peer support helped both carers and peer volunteers through the realization that they were "not alone" in their experiences and emotions. Additional carer benefits included opportunities to talk freely about difficult experiences and learning how others cope. Volunteers found their role rewarding, describing satisfaction from putting their own experiences to good use. These findings highlight the isolation and exclusion experienced by current and former carers of people with dementia and draw attention to the benefits of peer support for both the groups.

  10. Feedback on doctors' performance from parents and carers of children: a national pilot study.

    PubMed

    McGraw, M; Fellows, S; Long, A; Millar, H; Muir, G; Thomson, A; Uddin, S; Watt, J; Williams, S

    2012-03-01

    To evaluate the reliability and validity of a children's carers' feedback tool, to explore the feasibility of delivering this nationally and to determine acceptability to doctors of this assessment. 122 UK paediatricians on the specialist register undertaking outpatient consultations. Participants were each sent 50 forms for distribution to carers. Mean scores for each question, and for the overall pilot cohort were returned to participants with verbatim free text comments. Participating paediatricians' views were sought before and after receiving feedback. 122 doctors returned 4415 forms (mean 36 per doctor). All doctors scored highly with scores across all returned forms having a median of 4.58 (IQ range 0.17) where the maximum score was 5. Differences were observed between scores from female compared to male carers (p<0.05), from consultations rated by carer and child compared to carer alone (p<0.05) and from carers who had previously met the doctor compared to those in their first consultation (p<0.001). 'White' doctors received higher ratings than 'non-white' doctors (p<0.05) and white patients rated both white doctors and non-white doctors more highly than non-white patients (p<0.01). A minimum of 25 consultations rated by children's carers are needed for acceptable reliability. 93.9% of participants would be happy to be assessed in this way for the purposes of revalidation. National delivery of a valid and reliable method of carer feedback is feasible. The scores received and acceptability in these self-selected doctors was high. Confounding variables may influence feedback, so guidance on interpretation may be needed.

  11. Young carer awareness, identification and referral.

    PubMed

    Sprung, Sally; Laing, Michelle

    2017-08-02

    Young carers often provide care because they have always done so for the people they care about, and because they believe that the care recipient could not manage without them. For many young carers, looking after their own health, combining caring with schoolwork, getting access to training or having time off from carer duties can be a major challenge ( Department of Health [DH], 2008 ). This paper presents evidence from a literature review that builds a substantial body of knowledge to suggest that community nursing teams must develop supportive approaches towards increasing an awareness of young carers' needs. Identification of young carers by community nurses will encourage referral to appropriate services and agencies. The aim of this study was to appraise, for the Queen's Nursing Institute, the published evidence base to explore young carers' needs and how community nurses could support young carers' needs in England. Databases were systematically searched. Title and abstract reviews found 606 potential studies (see Figure 1 ), which were identified around topics corresponding to the headings of three distinct categories: mental health and wellbeing; education needs and resilience; and development of coping strategies. Full-text review resulted in 26 publications that met the study's inclusion criteria. The results of this work show that there is a scarcity of publications around the community nursing needs of young carers. However, studies consistently report young carers are hidden from view and have a significant requirement for support and information. Therefore, effective ways of delivering community nursing support and information to young carers needs to be developed by service providers as a matter of priority, and implemented to give the support that young carers need.

  12. CarerSupport - An Innovative Approach to Informal Carers' Training and Collaboration.

    PubMed

    Lunde, Lene; Moen, Anne

    2016-01-01

    EU and national policies for long-term care acknowledge the role of informal carers. However, there is still little adequate support to prepare or ease informal carers in terms of training to allow them improve their skills, alleviate psychosocial stress and maintain their own health and well-being. In the CarerSupport project, we seek to integrate services, deploy and test an integrated ICT platform enabling participation and collaboration of informal carers, psychologists and health professionals to collaborate, facilitate training and orientation, offer tele-consulting services and psychosocial support to carers. Based on this platform and its content, we will deploy and report on informal carers' experiences with the wide range of offered service. The poster will present the first experiences and suggest potentials for a service like CarerSupport.

  13. Grandparents as Educators and Carers in China

    ERIC Educational Resources Information Center

    Nyland, Berenice; Zeng, Xiaodong; Nyland, Chris; Tran, Ly

    2009-01-01

    Many grandparents play a significant role as educators and carers of children in the preschool years. Recently, this role has become the focus of much early childhood research as challenges facing grandparent carers and grandparent-headed households increasingly become an economic and social issue. Using survey data from China we explore the role…

  14. Discharge planning quality from the carer perspective.

    PubMed

    Grimmer, K A; Moss, J R; Gill, T K

    2000-01-01

    Discharge planning endeavours to assist the transition of patients from the acute hospital setting into the community. We examined the quality of discharge planning from the perspective of the carer. Spouses were the most common carers for the elderly patients in our study. Many carers were also elderly, with their own health problems. Using a new instrument (entitled PREPARED) (K. Grimmer and J. Moss, Int J Qual Health Care (in press)), carers rated the quality of planning for discharge much lower than did the patient, indicating that their needs were often not met when discharge was being planned. In free text responses, carers expressed their dissatisfaction over communication about how the family would cope once the patient went home. Carers generally had lower summary mental quality of life scores than the Australian norms (as measured by the SF-36 health survey (J. Ware and R. Sherbourne, Med Care 1992; 30: 473-483)), suggesting that the caring role may have impacted upon their emotional wellbeing. The rate of use of community services in the first week post-discharge was low, suggesting that carers and patients carried the majority of the burden immediately after discharge. We suggest that planning for hospital discharge requires more consideration of the carer.

  15. Supporting family carers using interative multimedia.

    PubMed

    Hanson, E J; Tetley, J; Shewan, J

    ACTION (Assisting Carers using Telematic Interventions to meet Older persons' Needs) is a nursing led Pan-European project (1997-2000). Its primary aim is to maintain the autonomy, independence and quality of life of frail older and disabled persons and their family carers by the application of telematic technology. This article describes the development of two multimedia programmes created as part of the ACTION project. Programme 1 'Planning ahead' helps family carers and frail older people to think about and plan for the future. Programme 2 'Break from caring' assists carers and older people to explore the range of respite care options available. Both programmes have been developed using a multimethod, user-centred approach. Preliminary evaluation data have indicated that frail older people and their carers have used the programmes to assist them when making difficult decisions such as selecting a nursing home, or exploring the use of respite care facilities.

  16. Psychometric properties of carer-reported outcome measures in palliative care: A systematic review.

    PubMed

    Michels, Charlotte T J; Boulton, Mary; Adams, Astrid; Wee, Bee; Peters, Michele

    2016-01-01

    Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers' outcomes is a common problem. To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures' psychometric properties. A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure. The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts. Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care. A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required. © The Author(s) 2015.

  17. Stroke: the increasing complexity of carer needs.

    PubMed

    Ski, Chantal; O'Connell, Bev

    2007-06-01

    In Australia, more than 346,000 individuals who experience a stroke return to living in their homes with varying degrees of disability. They rely on emotional and physical support from informal carers, typically family members. Informal carers have an indispensable role in patient care poststroke, and the ability of carers to manage this role effectively is crucial for stroke survivors to be able to return home. The aim of this study was to examine the impact of the caring role on carers of stroke survivors, particularly the services provided and the levels of depression and well-being experienced. The study used a longitudinal design incorporating survey methods. Stroke survivors were assessed for functional ability, quality of life, and depression using three assessment tools: the Stroke Impact Scale, World Health Organization Quality of Life-BREF scale, and Zung Self-Rating Depression Scale. A total of 26 people were surveyed: 13 stroke survivors and their 13 carers. Carer knowledge of stroke support services was also explored. Information was collected by using survey methods and structured interviews at 3 weeks and at 3 months postdischarge. The main finding was that depression scores for carers and stroke survivors were below Australian norms at both assessment time points. The major concern identified by carers was poor follow-up procedures for initiating rehabilitation in the home. This study highlighted that a lack of appropriate discharge planning, in conjunction with early discharge of stroke survivors, can have an impact on the rehabilitation process and place increased and unrealistic demands on carers.

  18. Physical health nurse consultant role to improve physical health in mental health services: A carer's perspective.

    PubMed

    Happell, Brenda; Wilson, Karen; Platania-Phung, Chris; Stanton, Robert

    2016-06-01

    The physical health of people diagnosed with a mental illness is significantly poorer in comparison with the general population. Awareness of this health disparity is increasing; however, strategies to address the problem are limited. Carers play an important role in the physical health care of people with mental illness, particularly in facilitating navigation of and advocating in the health care system. A specialist physical health nurse consultant position has been suggested as a way to address the physical health care disparity and limited research available suggests that positive outcomes are possible. In the present study, a qualitative exploratory research project was undertaken, involving in-depth interviews with people identifying as mental health carers. Two focus groups and one individual interview were conducted involving a total of 13 carers. The resulting data were analyzed thematically. Views and opinions about the proposed physical health nurse consultant (PHNC) position were sought during these interviews and are reported in this paper. Two main sub-themes were evident relating to characteristics of this role: reliability and consistency; and communication and support. Essentially carers expressed a need for support for themselves and consumers in addressing physical health concerns. Successful implementation of this position would require a consistent and reliable approach. Carers are significant stakeholders in the physical health of consumers of mental health services and their active involvement in identifying and tailoring services, including development of the physical health nurse consultant must be seen as a priority. © 2016 Australian College of Mental Health Nurses Inc.

  19. Carers and the digital divide: factors affecting Internet use among carers in the UK.

    PubMed

    Blackburn, Clare; Read, Janet; Hughes, Nathan

    2005-05-01

    This paper presents data from a cross-sectional survey of 3014 adult carers, examining use of the Internet and factors associated with it. Carers recruited from the databases of three local authorities and other carer organisations within their geographical boundaries and that of Carers UK, a national carers organisation, were sent a postal questionnaire (response rate: 40%). A comparison of our data with national data on carers suggests some under-representation of men and younger adult carers and some over-representation of those who had been caring for long periods and those with substantial caring responsibilities. Two measures of Internet use were used and are presented in this analysis: previous use (ever used vs never previously used) and frequency (less than once a week vs once a week or more). Bivariate analyses identified patterns of Internet use and socio-demographic and socio-economic factors and caring circumstances associated with them. Factors significantly associated with each measure of Internet use were entered into direct logistic regression analyses to identify factors significantly associated with each measure. Half (50%) of all carers had previously used the Internet. Of this group, 61% had used it once a week or more frequently. Factors significantly associated with having previously used the Internet were carer's age, employment status, housing tenure and number of hours per week they spent caring. Frequency of Internet use was significantly associated with carer's age, sex, employment status and number of hours spent caring. Our study suggests that a significant number of carers may not currently be Internet users and that age, gender, socio-economic status and caring responsibilities shape Internet use in particular ways. Given the targets set by government for the development of online services, it is important to address the digital divide among carers and to continue to develop other services and information systems to meet the needs of

  20. [Carers and the policy for autonomy].

    PubMed

    Naiditch, Michel

    2016-03-01

    Long-time invisible, the role of informal carers in providing assistance to elderly patients losing their autonomy is gaining recognition. A policy in favour of carers coordinated with that aimed at the people being cared for is necessary, but it is struggling to establish itself in France. Some progress can however be seen with the French bill on adapting society to the ageing of the population.

  1. Working in partnership with patients and carers.

    PubMed

    Baillie, Lesley

    2016-12-07

    Health policy and healthcare professional guidelines promote patient and carer involvement, which includes working in partnership with service users in all aspects of healthcare provision, research and education. This article explores the expectations for nurses to work in partnership with patients and carers, examines the definitions and theories of working in partnership and related concepts, as well as considering examples of partnership working in nursing practice.

  2. The Controllability Beliefs Scale Used with Carers of People with Intellectual Disabilities: Psychometric Properties

    ERIC Educational Resources Information Center

    Dagnan, D.; Hull, A.; McDonnell, A.

    2013-01-01

    Background: Beliefs about the controllability of behaviour have been consistently shown to be important in understanding the responses of carers to the challenging behaviour of people with intellectual disabilities (IDs). This paper reports the reliability and validity of the Controllability Beliefs Scale (CBS), a 15-item measure of beliefs…

  3. The controllability beliefs scale used with carers of people with intellectual disabilities: psychometric properties.

    PubMed

    Dagnan, D; Hull, A; McDonnell, A

    2013-05-01

    Beliefs about the controllability of behaviour have been consistently shown to be important in understanding the responses of carers to the challenging behaviour of people with intellectual disabilities (IDs). This paper reports the reliability and validity of the controllability beliefs scale (CBS), a 15-item measure of beliefs regarding the controllability of challenging behaviour when used with carers of people with IDs. Two hundred and sixty-four carers of people with IDs completed the CBS, 74 people also completed the modified attributional style questionnaire and the self-injury behavioural understanding questionnaire scale to determine concurrent and convergent validity and 34 people completed the scale twice within a 2- to 4-week period to determine test-retest reliability. The scale has a two-factor structure and has adequate internal reliable. The scale is significantly correlated with the controllability, internality and stability items from the Modified Attributional Style Questionnaire, showed expected associations with behavioural and internal emotional understanding items from the self-injury behavioural understanding questionnaire. The scale has good test-retest reliability. The data support use of the CBS in clinical practice and research to assess carers' beliefs regarding challenging behaviour of people with IDs. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 Blackwell Publishing Ltd.

  4. Psychometric properties of carer-reported outcome measures in palliative care: A systematic review

    PubMed Central

    Michels, Charlotte TJ; Boulton, Mary; Adams, Astrid; Wee, Bee; Peters, Michele

    2016-01-01

    Background: Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers’ outcomes is a common problem. Aim: To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures’ psychometric properties. Design: A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure. Data sources: The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts. Results: Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care. Conclusion: A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required. PMID:26407683

  5. Predicting carer health effects for use in economic evaluation.

    PubMed

    Al-Janabi, Hareth; Manca, Andrea; Coast, Joanna

    2017-01-01

    Illnesses and interventions can affect the health status of family carers in addition to patients. However economic evaluation studies rarely incorporate data on health status of carers. We investigated whether changes in carer health status could be 'predicted' from the health data of those they provide care to (patients), as a means of incorporating carer outcomes in economic evaluation. We used a case study of the family impact of meningitis, with 497 carer-patient dyads surveyed at two points. We used regression models to analyse changes in carers' health status, to derive predictive algorithms based on variables relating to the patient. We evaluated the predictive accuracy of different models using standard model fit criteria. It was feasible to estimate models to predict changes in carers' health status. However, the predictions generated in an external testing sample were poorly correlated with the observed changes in individual carers' health status. When aggregated, predictions provided some indication of the observed health changes for groups of carers. At present, a 'one-size-fits-all' predictive model of carer outcomes does not appear possible and further research aimed to identify predictors of carer's health status from (readily available) patient data is recommended. In the meanwhile, it may be better to encourage the targeted collection of carer data in primary research to enable carer outcomes to be better reflected in economic evaluation.

  6. iCarer: AAL for the Informal Carers of the Elderly.

    PubMed

    Moreno, P A; Garcia-Pacheco, J L; Charvill, J; Lofti, A; Langensiepen, C; Saunders, A; Berckmans, K; Gaspersic, J; Walton, L; Carmona, M; Perez de la Camara, S; Sanchez-de-Madariaga, R; Pozo, J; Muñoz, A; Pascual, M; Gomez, E J

    2015-01-01

    In the context of the long-term care for older adults, informal carers play a key role. Daily competing priorities or a care-skills deficit may lead them to stress, anxiety and/or depression. The iCarer project (AAL-2012-5-239) proposes the design and implementation of a cloud-inspired personalised and adaptive platform which will offer support to informal carers of older adults with cognitive impairment. By means of a holistic approach comprising technologies and services addressing the intelligent and interactive monitoring of activities, knowledge management for personalised guidance and orientation, virtual interaction, e-learning, care coordination facilities and social network services, iCarer aims to reduce the informal carer stress and to enhance the quality of care they provide, thus improving their quality of life. The iCarer platform will be evaluated through a multi-centre non-controlled study (4 months; 48 homes located in England and in Slovenia). Currently the iCarer project is completing the development work. The evaluation trial is expected to start in August 2015.

  7. Abuse of elderly people by their carers.

    PubMed Central

    Homer, A C; Gilleard, C

    1990-01-01

    OBJECTIVE--To assess the prevalence of abuse of elderly people by their carers and the characteristics of abusers and the abused. DESIGN--Information on abuse and risk factors was collected over six months from carers and patients. Risk factors were identified in the abused group and compared with those in a non-abused control group. SETTING--Carers were interviewed at home; patients were examined in the wards of Putney and Barnes geriatric hospitals, London. SUBJECTS--All patients referred from any source for respite care to the geriatric services over a six month period and their carers. MAIN OUTCOME MEASURES--Amount of physical and verbal abuse or neglect. Quantification of risk factors and correlation with the presence or absence of abuse. RESULTS--45% Of carers openly admitted to some form of abuse. Few patients admitted abuse. The most significant risk factor for physical abuse was alcohol consumption by the carer (p less than 0.001). Other significant risk factors were a poor pre-morbid relationship and previous abuse over many years. Abuse was often reciprocated and was associated with social dysfunction in many patients. Service delivery, respite care, and level of mental and physical disability were not significantly associated with abuse. CONCLUSION--The high level of abuse found in elderly patients in respite care was particularly associated with alcohol abuse and long term relationships of poor quality, which are difficult to change. Even with increased provision of services, care in the community may not be the best solution for these people. PMID:2271883

  8. Formal and informal support received by carers of elderly dependents.

    PubMed Central

    Jones, D A; Vetter, N J

    1985-01-01

    This study describes the activity of informal carers who look after elderly dependents and particularly investigates the role of formal services in supporting these carers in maintaining dependent, elderly people in the community. The results lend no support to the view that families neglect their elderly relatives or that community services displace the role of informal carers, but rather suggest that carers support elderly dependents at great cost to themselves and with inadequate support from community services. PMID:3161579

  9. The attitudes of carers and old age psychiatrists towards the treatment of potentially fatal events in end-stage dementia.

    PubMed

    Coetzee, R H; Leask, S J; Jones, R G

    2003-02-01

    Deciding how to treat patients with end-stage dementia developing potentially fatal events has long been contentious. Under expected new legislation the role of carers is likely to increase. Old age psychiatrists frequently have to decide between active or palliative approaches to such patients. Little is known concerning the comparative attitudes of carers and old age psychiatrists. This research examined how their attitudes differed. A Likert scale attitudinal questionnaire was designed following a literature review and was initially distributed to a pilot group of medical students to aid in establishing reliability and validity. Subsequently it was sent to all members of the local Alzheimer's Society Branch and all the old age psychiatrists in the health region. Its validity and reliability were investigated using factor analysis and test-retest reliability. Between group comparisons were then made using the students t-test and analysis of variance. 148 carers and 34 clinicians responded. Factor analysis and test-retest analysis of students' responses validated six questions, which grouped into two factors, relating to active treatment and patient-centred ethics. Between group comparisons revealed significant differences between carers' and clinicians' attitudes in these areas. Clinicians favoured active treatment of potentially fatal events in end-stage dementia less than carers who more significantly valued patient-centred issues such as dying with dignity, the patient's best interests and the patient's wishes. Old age psychiatrists and carers significantly differed in their attitudes towards treatment of potentially fatal events in end-stage dementia and this may impact on decision-making. Considerably more clinician/carer debate and dialogue seems needed. Copyright 2003 John Wiley & Sons, Ltd.

  10. The development and validation of the Dementia Quality of Life Scale for Older Family Carers (DQoL-OC).

    PubMed

    Oliveira, Deborah C; Vass, Catherine; Aubeeluck, Aimee

    2017-03-02

    Little is known about how caregiving affects the quality of life (QoL) of older family carers and no dementia and age-specific QoL scale is available for use with this population. This study aimed to develop and validate a unique dementia caregiving- and age-specific tool - the 'Dementia Quality of Life Scale for Older Family Carers' (DQoL-OC). The scale items were identified in focus groups with older family carers in the UK. Content and face validity were evaluated by a panel of six experts. A set of 100 items assessed on a 5-point Likert scale was tested with 182 older family carers. Test-re-test reliability was conducted with 18 individuals. Exploratory factor analysis was used to identify the QoL model and reduce the number of scale items. Convergent construct validity and internal consistency were also established. A one-factor solution containing 22 items was obtained. Test-re-test reliability (lower bound r = 0.835; p < 0.001), internal consistency (Cronbach's α = 0.936), and convergent construct validity were established. Significantly lower levels of QoL were found in female older carers; those who perceived their relatives with dementia as being at the earlier stages of the disease and with unstable dementia symptoms; those providing care more hours per day and more days per week; and those in younger-old age. The DQoL-OC is a valid and reliable scale that will be useful for research and in clinical practice with older family carers of people with dementia. These study results will inform future health and social care aiming to improve life quality for this overlooked population of carers.

  11. Carer involvement with drug services: a qualitative study.

    PubMed

    Orr, Linda C; Barbour, Rosaline S; Elliott, Lawrie

    2013-09-01

    Empirical research suggests that involving carers brings benefits to families and services. Consequently, drug-related policy and guidance has increasingly encouraged drug services to involve carers at all levels of service provision. To explore the purpose and scope of carer involvement with adult drug services in North-east Scotland. A total of 82 participants (20 informal carers, 43 service providers and 19 policy makers) were purposively selected to take part in a qualitative study. Eight focus groups and 32 interviews were conducted between 2007 and 2008. Three themes were identified through thematic coding: 'Current levels of involvement', 'Use of the term carer' and 'Opportunities for change?' Carer involvement was described as limited, unplanned and unstructured, and consisted largely of information and advice, practical and emotional support, and signposting of services. Although use of the term 'carer' was contested within and across the groups, caring in a drug context was considered the 'same but different' from caring in other contexts. Carers remained sceptical that services actually wanted to involve them in supporting their relative or to offer carers support in their own right. Many service providers and policy makers regarded carer involvement as an aspiration. Encouraging carers, service providers and policy makers to reach a shared understanding of caring in a drug context may help translation of policy into practice. However, there is also a fundamental need for drug services to widen the level and type of involvement activities on offer to carers. © 2012 John Wiley & Sons Ltd.

  12. How to make carer involvement in mental health inpatient units happen: a focus group study with patients, carers and clinicians.

    PubMed

    Giacco, Domenico; Dirik, Aysegul; Kaselionyte, Justina; Priebe, Stefan

    2017-03-21

    Carers are family members or friends who support people with a mental health problem without being paid. Carer involvement in mental health treatment has been consistently supported by research evidence and promoted by policies but its implementation rates are poor. Particularly when patients are treated in inpatient units, carers often report being left without information or being excluded from decisions about treatment. In this study we have explored, along with staff perspectives, views of patients and carers who had a recent experience of inpatient mental health care on how to improve the implementation of carer involvement in inpatient care. Sixteen focus groups were held with carers, patients and clinicians in London, United Kingdom. We included staff working in inpatient units and patients and carers who had experience of inpatient care in the last five years. Data from focus groups were analysed using thematic analysis. Eighty six participants in total (31 service users, 22 carers and 33 clinicians) attended the focus groups. Participants identified that generally, carer involvement should happen as soon as possible after admission, although this may be challenging in some cases. Carer involvement should include receiving information, participating in decisions about care and discharge and receiving emotional support by staff. When carers are involved, their personal knowledge of the patient's condition should be utilised. Challenges to carer involvement may include problems with identifying carers during a mental health crisis, obtaining valid patient consent, sharing appropriate information, and contacting and engaging carers. Additionally, it was perceived that all the ward staff need to be actively engaged in order to make carer involvement happen and this cannot be left only to specifically trained clinicians. These findings identify basic components that all family interventions in inpatient units should have. Further studies are needed to explore

  13. A psychometric comparison of two carer quality of life questionnaires in Huntington's disease: implications for neurodegenerative disorders.

    PubMed

    Hagell, Peter; Smith, Stephen

    2013-01-01

    The carer impact of neurodegenerative disorders such as Huntington's disease (HD) is vast. Attempts to measure carer QoL in neurodegenerative disorders include the three-dimensional (Practical aspects of Caregiving, PC; Satisfaction with Life, SL; Feelings about Living with Huntington's disease, FL) Huntington's Disease Quality of Life Battery for Carers (HDQoL-C) and the unidimensional Alzheimer's Carer's Quality of Life Inventory (ACQLI). However, evidence regarding their psychometric properties is sparse. To test and compare the psychometric properties of the HDQoL-C, its short-form, and the ACQLI among HD carers. Data from 61 HD carers (36 women; mean age, 55) were analysed using traditional psychometric methods. Data completeness was good (>95% computable scale scores) but compromised for the PC and total HDQoL-C scales (≤80% computable scale scores). Scaling assumptions were supported for the SL and ACQLI scales (corrected item-total correlations ≥0.38; scaling success rates, 94-100%) but not for the PC, FL or total HDQoL-C scales (corrected item-total correlations ≥0.08; scaling success rates, 39-62%). Floor/ceiling effects were ≤9.8%. Reliabilities were ≥0.84, except for the PC scale (0.62). The HDQoL-C failed to exhibit suitability as a HD carer outcome measure, as two of its three scales did not meet basic psychometric criteria. The third scale (SL) did not outperform the ACQLI. This suggests that carer impact is not disease specific across neurodegenerative disorders.

  14. [Information needs of physicians, professional carers and family carers for an evidence-based dementia website].

    PubMed

    Komarahadi, Fely L; Ruf, Daniela; Hüll, Michael; Härter, Martin

    2012-01-01

    Despite the demographically driven rapid growth of the number of persons with dementia, in Germany a website is lacking that provides evidence based information about the disease, its burden and therapeutic options to family and professional carers as well as physicians. A website was developed with the objective to give free access to evidence based information concerning the disease and care for patients with dementia. In order to meet the expectations of the user groups an analysis of information needs was performed with 80 physicians, 163 professional carers and 104 family carers. All user groups rated information on symptoms, course and treatment of dementia and support for family carers as important topics. Group differences were found for the need to be informed on financial support, daily care and interaction with patients. The contents of the website will be accommodated to the specific needs of the user groups. © Georg Thieme Verlag KG Stuttgart · New York.

  15. Acquired brain injury and dementia: a comparison of carer experiences.

    PubMed

    Jackson, Diana; Turner-Stokes, Lynne; Murray, Joanna; Leese, Morven; McPherson, Kathryn M

    2009-05-01

    As their differential needs are unknown and to inform service planning, this study (a) examined experiences of caring for adults with acquired brain injury (ABI) and (b) compared these with carers of adults with dementia. Cross-sectional postal survey. ABI carer experiences were compared with those of a previously studied group of dementia carers using equivalent instruments. Family carers (n = 222) of adults with ABI: TBI (49%), strokes (26%), brain infections (18%) and other (7%) completed validated questionnaires assessing physical dependency and psychological problems of those cared for and carers' own perceived burden, quality-of-life and mental health. Carer burden, quality-of-life and mental health were worse for ABI carers, but were not predicted by gender, relationship, injury type, physical dependency or cognitive problems in either ABI or dementia carers. Behavioural problems of those cared for varied between the two groups and affected carers differently. Aggressive problems significantly predicted greater burden, poor quality-of-life and mental health in ABI carers, whereas passivity/low mood significantly predicted greater burden and worse quality-of-life in dementia carers. This study revealed different experiences of caring for younger adults with ABI vs. older adults with dementia, thereby supporting targeted development of services to sustain families affected by these conditions.

  16. Validation of the Verbal and Social Interaction questionnaire: carers' focus in the carer-resident relationship in supported housing facilities for persons with psychiatric disabilities (VSI-SH).

    PubMed

    Brunt, D; Rask, M

    2013-04-01

    A questionnaire to measure the verbal and social interactions between carers and residents in supported housing facilities for persons with psychiatric disabilities has been developed. It is an adaptation of a questionnaire originally used in a forensic psychiatric setting. The aim of the present study was thus to investigate the construct validity and the reliability of this new version of the Verbal and Social Interactions questionnaire for use in supported housing facilities (VSI-SH). Two hundred and twenty-three carers from municipal and privately run housing facilities completed the questionnaire. A factor analysis was performed, which resulted in six factors. The number of items was reduced from the original 47 to 30 in order to minimize factorial complexity and multiple loadings. The reliability was tested with Cronbach's alpha and good internal consistency for the questionnaire and five of the six factors was found. The resulting six factors and the items were compared to the conceptual model and four of the six factors corresponded well with the categories in this original theoretical model. The questionnaire can be a useful contribution to the study of interactions between carers and residents in supported housing facilities for persons with psychiatric disabilities.

  17. Evaluating and Quantifying User and Carer Involvement in Mental Health Care Planning (EQUIP): Co-Development of a New Patient-Reported Outcome Measure

    PubMed Central

    2016-01-01

    International and national health policy seeks to increase service user and carer involvement in mental health care planning, but suitable user-centred tools to assess the success of these initiatives are not yet available. The current study describes the development of a new reliable and valid, interval-scaled service-user and carer reported outcome measure for quantifying user/carer involvement in mental health care planning. Psychometric development reduced a 70-item item bank to a short form questionnaire using a combination of Classical Test, Mokken and Rasch Analyses. Test-retest reliability was calculated using t-tests of interval level scores between baseline and 2–4 week follow-up. Items were worded to be relevant to both service users and carers. Nine items were removed following cognitive debriefing with a service user and carer advisory group. An iterative process of item removal reduced the remaining 61 items to a final 14-item scale. The final scale has acceptable scalability (Ho = .69), reliability (alpha = .92), fit to the Rasch model (χ2(70) = 97.25, p = .02), and no differential item functioning or locally dependent items. Scores remained stable over the 4 week follow-up period, indicating good test-retest reliability. The ‘Evaluating the Quality of User and Carer Involvement in Care Planning (EQUIP)’ scale displays excellent psychometric properties and is capable of unidimensional linear measurement. The scale is short, user and carer-centred and will be of direct benefit to clinicians, services, auditors and researchers wishing to quantify levels of user and carer involvement in care planning. PMID:26963252

  18. Instruments measuring the disease-specific quality of life of family carers of people with neurodegenerative diseases: a systematic review

    PubMed Central

    Page, Thomas E; Farina, Nicolas; Brown, Anna; Daley, Stephanie; Bowling, Ann; Basset, Thurstine; Livingston, Gill; Knapp, Martin; Murray, Joanna; Banerjee, Sube

    2017-01-01

    Objective Neurodegenerative diseases, such as dementia, have a profound impact on those with the conditions and their family carers. Consequently, the accurate measurement of family carers' quality of life (QOL) is important. Generic measures may miss key elements of the impact of these conditions, so using disease-specific instruments has been advocated. This systematic review aimed to identify and examine the psychometric properties of disease-specific outcome measures of QOL of family carers of people with neurodegenerative diseases (Alzheimer's disease and other dementias; Huntington's disease; Parkinson's disease; multiple sclerosis; and motor neuron disease). Design Systematic review. Methods Instruments were identified using 5 electronic databases (PubMed, PsycINFO, Web of Science, Scopus and the International Bibliography of the Social Sciences (IBSS)) and lateral search techniques. Only studies which reported the development and/or validation of a disease-specific measure for adult family carers, and which were written in English, were eligible for inclusion. The methodological quality of the included studies was evaluated using the COnsensus based Standards for the selection of health Measurement Instruments (COSMIN) checklist. The psychometric properties of each instrument were examined. Results 676 articles were identified. Following screening and lateral searches, a total of 8 articles were included; these reported 7 disease-specific carer QOL measures. Limited evidence was available for the psychometric properties of the 7 instruments. Psychometric analyses were mainly focused on internal consistency, reliability and construct validity. None of the measures assessed either criterion validity or responsiveness to change. Conclusions There are very few measures of carer QOL that are specific to particular neurodegenerative diseases. The findings of this review emphasise the importance of developing and validating psychometrically robust disease

  19. Instruments measuring the disease-specific quality of life of family carers of people with neurodegenerative diseases: a systematic review.

    PubMed

    Page, Thomas E; Farina, Nicolas; Brown, Anna; Daley, Stephanie; Bowling, Ann; Basset, Thurstine; Livingston, Gill; Knapp, Martin; Murray, Joanna; Banerjee, Sube

    2017-03-29

    Neurodegenerative diseases, such as dementia, have a profound impact on those with the conditions and their family carers. Consequently, the accurate measurement of family carers' quality of life (QOL) is important. Generic measures may miss key elements of the impact of these conditions, so using disease-specific instruments has been advocated. This systematic review aimed to identify and examine the psychometric properties of disease-specific outcome measures of QOL of family carers of people with neurodegenerative diseases (Alzheimer's disease and other dementias; Huntington's disease; Parkinson's disease; multiple sclerosis; and motor neuron disease). Systematic review. Instruments were identified using 5 electronic databases (PubMed, PsycINFO, Web of Science, Scopus and the International Bibliography of the Social Sciences (IBSS)) and lateral search techniques. Only studies which reported the development and/or validation of a disease-specific measure for adult family carers, and which were written in English, were eligible for inclusion. The methodological quality of the included studies was evaluated using the COnsensus based Standards for the selection of health Measurement Instruments (COSMIN) checklist. The psychometric properties of each instrument were examined. 676 articles were identified. Following screening and lateral searches, a total of 8 articles were included; these reported 7 disease-specific carer QOL measures. Limited evidence was available for the psychometric properties of the 7 instruments. Psychometric analyses were mainly focused on internal consistency, reliability and construct validity. None of the measures assessed either criterion validity or responsiveness to change. There are very few measures of carer QOL that are specific to particular neurodegenerative diseases. The findings of this review emphasise the importance of developing and validating psychometrically robust disease-specific measures of carer QOL. Published by the BMJ

  20. Effect of perceived stigmatization on the quality of life among ageing female family carers: a comparison of carers of adults with intellectual disability and carers of adults with mental illness.

    PubMed

    Chou, Y C; Pu, C Y; Lee, Y C; Lin, L C; Kröger, T

    2009-07-01

    Little account has been taken of quality of life (QoL) among family carers of adults with an intellectual disability (ID) and family carers of adults with a mental illness (MI), particularly the female ageing carers' perceived stigma. We explore whether there are differences in the significant predictors of female ageing family carers' QoL between family carers of adults with ID and family carers of adults with MI and aim to examine the effect of these differences in stigma on carer QoL between the two groups. A structural survey interview was administered to 350 female family carers supporting persons with ID and 66 female carers supporting persons with MI; the carers were aged 55 years and older, and the interviews were carried between July 2006 and April 2007 at the carers' homes in a county in Taiwan. The survey package contained standardised scales to measure the carer's stigma, social support, QoL and health as well as adult and carer socio-demographic data. The results highlight that in both groups the ageing female family carers' health and social support were strongly associated with the level of their QoL even though there was also a strong effect of carers' perceived stigma on their QoL. Contrary to previous findings, ageing female family carers of adults with MI had a higher level of QoL compared with the carers of adults with ID. Hierarchical regressions show a stronger effect of perceived stigma on the carer QoL among the family carers of adults with MI than among the carers of adults with ID. This study suggests that attempts to improve these female older family carers' health and social support must include their lifelong unmet needs in terms of how to cope with the perceived stigma associated with their position.

  1. Effect of Perceived Stigmatisation on the Quality of Life among Ageing Female Family Carers: A Comparison of Carers of Adults with Intellectual Disability and Carers of Adults with Mental Illness

    ERIC Educational Resources Information Center

    Chou, Y. C.; Pu, C. Y.; Lee, Y. C.; Lin, L. C.; Kroger, T.

    2009-01-01

    Background: Little account has been taken of quality of life (QoL) among family carers of adults with an intellectual disability (ID) and family carers of adults with a mental illness (MI), particularly the female ageing carers' perceived stigma. We explore whether there are differences in the significant predictors of female ageing family carers'…

  2. Complementary therapy for carers on a transplant unit.

    PubMed

    Nightingale, Lydia; Stringer, Jacqui

    2013-08-01

    This paper reports on the evaluation of a Carers Complementary Therapy Project on a Haematology and Transplant Unit. To evaluate the project using quantitative and qualitative data. Data was collected on consultation forms and entered into a spreadsheet for a study period of 24 months. Data was also collected from questionnaires. 15 min chair massages given to carers of the inpatients. The total number of complementary therapy treatments in the 24 months period was 227. Of these interventions 138 carers presented with stress, 115 with sleep disturbance, 92 with worry and 88 with anxiety. The average pre-therapy 'feel good' score was 5/10 and the average post therapy score was 8/10. The carers' feedback included positive comments about changes in their physical, mental and emotional states. The data suggests that the Carers Project facilitates positive change in the physical, mental and emotional states of carers. Copyright © 2013 Elsevier Ltd. All rights reserved.

  3. Developing the knowledge base about carers and personalisation: contributions made by an exploration of carers' perspectives on personal budgets and the carer-service user relationship.

    PubMed

    Larkin, Mary

    2015-01-01

    This qualitative study aimed to explore an under-researched issue within the emerging body of research about carers and personalisation - the carer-service user relationship. It was carried out across 11 English local authorities between 2011 and 2012 and focused on the impact of a change in the service user's social care arrangements to a personal budget on this relationship. Using purposive sampling and explicit inclusion criteria, data were gathered through semi-structured in-depth interviews with 23 carers in long-term dyadic relationships with an adult in receipt of social care who had changed to a personal budget. The interviews explored carers' perceptions of the carer-service user relationship before and after the advent of the personal budget and changes that had occurred. The findings were thematically analysed and reflect the fact that in addition to the effects of the move to a personal budget on the carer-service user relationship, the interviewees talked at length about a range of other effects of this move. Just over half of those interviewed felt that the personal budget had enhanced the carer-service user relationship. The other effects were both positive and negative. Three quarters reported positive outcomes, such as feeling happier, healthier and having more control over their lives. Although two thirds experienced negative feelings about having less involvement in the service user's care, these feelings eased over time and if they had confidence in the quality of the care. Over half found administering the personal budget stressful. Further analysis of these findings showed the study contributes not only to existing knowledge about the carer-service user relationship within personalisation but also to knowledge about the effects of personalisation on carers more generally. It therefore simultaneously develops the emergent knowledge base about carers and personalisation. Recommendations based on this analysis are made about future practice and

  4. Working with carers in the next decade: the challenges.

    PubMed

    Jarvis, Alison

    2010-03-01

    This paper outlines two challenges to community nurses as they work with unpaid carers. These reflect a changing culture in the way that health care will be delivered in the coming decade. The first of these challenges is a shift towards focusing on outcomes for both service users and adult carers. Outcomes evidence the impact a service has on a person's life. The second is the increasing focus on the concept of carers as partners in care.

  5. A telehealth behavioral coaching intervention for neurocognitive disorder family carers

    PubMed Central

    Gant, Judith R.

    2015-01-01

    Objectives This study examined the differential impact of two telehealth programs for women caring for an older adult with a neurocognitive disorder. Outcomes examined were depressive symptoms, upset following disruptive behaviors, anxious and angry mood states, and caregiving self‐efficacy. Methods Women cohabitating with a family member diagnosed with a neurocognitive disorder were assigned via random allocation to either of the following: (1) a 14‐week behavioral intervention using video instructional materials, workbook and telephone coaching in behavioral management, pleasant events scheduling, and relaxation or (2) a basic education guide and telephone support comparison condition. Telephone assessments were conducted by interviewers blind to treatment condition at pre‐intervention, post‐intervention, and 6 months following intervention. Results For those providing in‐home care at post‐treatment, depressive symptoms, upset following disruptive behaviors, and negative mood states were statistically lower in the behavioral coaching condition than in the basic education and support condition. Reliable change index analyses for Beck Depression Inventory II scores favored the behavioral coaching condition. Caregiving self‐efficacy scores for obtaining respite and for managing patient behavioral disturbances were significantly higher in the coaching condition. Effect sizes were moderate but not maintained at the 6‐month follow‐up. Conclusions This study provides some initial evidence for the efficacy of a telehealth behavioral coaching intervention compared with basic education and telephone support. Carers' abilities to maintain strategy use during progressive disorders such as Alzheimer's disease likely require longer intervention contact than provided in the current study. Dementia carers, including those living in rural areas, can benefit from accessible and empirically supported interventions that can be easily disseminated across distances

  6. A telehealth behavioral coaching intervention for neurocognitive disorder family carers.

    PubMed

    Steffen, Ann M; Gant, Judith R

    2016-02-01

    This study examined the differential impact of two telehealth programs for women caring for an older adult with a neurocognitive disorder. Outcomes examined were depressive symptoms, upset following disruptive behaviors, anxious and angry mood states, and caregiving self-efficacy. Women cohabitating with a family member diagnosed with a neurocognitive disorder were assigned via random allocation to either of the following: (1) a 14-week behavioral intervention using video instructional materials, workbook and telephone coaching in behavioral management, pleasant events scheduling, and relaxation or (2) a basic education guide and telephone support comparison condition. Telephone assessments were conducted by interviewers blind to treatment condition at pre-intervention, post-intervention, and 6 months following intervention. For those providing in-home care at post-treatment, depressive symptoms, upset following disruptive behaviors, and negative mood states were statistically lower in the behavioral coaching condition than in the basic education and support condition. Reliable change index analyses for Beck Depression Inventory II scores favored the behavioral coaching condition. Caregiving self-efficacy scores for obtaining respite and for managing patient behavioral disturbances were significantly higher in the coaching condition. Effect sizes were moderate but not maintained at the 6-month follow-up. This study provides some initial evidence for the efficacy of a telehealth behavioral coaching intervention compared with basic education and telephone support. Carers' abilities to maintain strategy use during progressive disorders such as Alzheimer's disease likely require longer intervention contact than provided in the current study. Dementia carers, including those living in rural areas, can benefit from accessible and empirically supported interventions that can be easily disseminated across distances at modest cost. © 2015 The Authors. International

  7. Combining informal care and work: supporting carers in the workplace.

    PubMed

    Arksey, Hilary

    2002-05-01

    The UK Government is concerned that women and men who care for disabled or sick relatives, or elderly people, and who also wish to take part in paid work should have increased opportunities to do so. However, many informal carers find combining work and care difficult; some may 'choose' to give up paid employment completely. The present paper draws on the findings from two projects to explore the extent to which the needs of employees with caring responsibilities are supported in the workplace. The two projects examined evidence from a study of informal carers assessed under the 1995 Carers Act, identified the difficulties which they face in their workplace and observed the strategies which they developed to help sustain the two roles. From this, a model of support for working carers was developed which includes leave policies, carer-friendly working arrangements, access to a (private) telephone, and supportive line managers and co-workers. This support model was tested on the employment policies of 13 employers to see how 'carer-friendly' they were. Most of the organisations studied were able to provide appropriate support for carers identified in the model. Questions were then raised about different aspects of carer-friendly working arrangements, including whether carers should receive any special treatment that is not available to their colleagues, the role of line managers, and the relationship between seniority and opportunities to combine work and care.

  8. Grief reactions in dementia carers: a systematic review.

    PubMed

    Chan, Diana; Livingston, Gill; Jones, Louise; Sampson, Elizabeth L

    2013-01-01

    Supporting dementia carers is an identified target of the UK government, yet we know little about such family carers' grief before and after the death of the person with dementia for whom they care. We systematically review the existing literature on characteristics, prevalence, predictors and associations of grief in dementia carers before and after death. We searched electronic databases and found 31 publications meeting predetermined criteria. Grief in dementia carers, which may be normal or complicated, is a complex reaction to losses occurring before and after death. Carers experience anticipatory grief as multiple losses for themselves (companionship, personal freedom and control) and the person with dementia. Anticipation and ambiguity about the future, anger, frustration and guilt are core features. Anticipatory grief is greatest in moderate to severe stage dementia and spouse carers, especially when the person with dementia is institutionalised. There was poor quality evidence about the prevalence of grief; studies reported anticipatory grief between 47% and 71%, and complicated grief after death is estimated around 20%. Carer depression increases with anticipatory grief. Being a spouse carer and being depressed are the strongest predictors of complicated and normal grief after death. Grief in dementia carers can be expected; however, those at risk of distressing anticipatory and complicated grief may be identified and targeted for intervention when necessary. Higher quality research from a wider range of samples and countries is needed to explore this complex and emergent topic. Copyright © 2012 John Wiley & Sons, Ltd.

  9. Becoming an expert carer: the process of family carers learning to manage technical health procedures at home.

    PubMed

    McDonald, Janet; McKinlay, Eileen; Keeling, Sally; Levack, William

    2016-09-01

    To describe the learning process of family carers who manage technical health procedures (such as enteral tube feeding, intravenous therapy, dialysis or tracheostomy care) at home. Increasingly, complex procedures are being undertaken at home but little attention has been paid to the experiences of family carers who manage such procedures. Grounded theory, following Charmaz's constructivist approach. Interviews with 26 family carers who managed technical health procedures and 15 health professionals who taught carers such procedures. Data collection took place in New Zealand over 19 months during 2011-2013. Grounded theory procedures of iterative data collection, coding and analysis were followed, with the gradual development of theoretical ideas. The learning journey comprised three phases: (1) an initial, concentrated period of training; (2) novice carers taking responsibility for day-to-day care of procedures while continuing their learning; and (3) with time, experience and ongoing self-directed learning, the development of expertise. Teaching and support by health professionals (predominantly nurses) was focussed on the initial phase, but carers' learning continued throughout, developed through their own experience and using additional sources of information (notably the Internet and other carers). Further work is needed to determine the best educational process for carers, including where to locate training, who should teach them, optimal teaching methods and how structured or individualized teaching should be. Supporting carers well also benefits patient care. © 2016 John Wiley & Sons Ltd.

  10. Attachment Style of Foster Carers and Caregiving Role Performance

    ERIC Educational Resources Information Center

    Caltabiano, Marie L.; Thorpe, Rosamund

    2007-01-01

    This study assessed the adult attachment styles of 111 male and female foster carers of children who have been abused and neglected in the Mackay/Whitsunday region of Queensland, Australia. It was hypothesised that those foster carers with secure attachment or with "earned" secure attachment status are better able to cope with the…

  11. Carers perspective on home dialysis: support, facts and legislation.

    PubMed

    Holman, Cathy

    2011-12-01

    Carers provide unpaid care and support to ill, frail or disabled friends or family members. It is important for health professionals to give carers of home dialysis patients time, space and permission to talk about how caring impacts upon their lives and to look at how best to support them.

  12. Rural dementia carers: formal and informal sources of support.

    PubMed

    Orpin, Peter; Stirling, Christine; Hetherington, Sharon; Robinson, Andrew

    2014-02-01

    Primary carers provide much of the day-to-day care for community-dwelling people living with dementia (PWD). Maintaining that contribution will require a more in-depth understanding of the primary carer role and the support needs that flow from that role. This study explored patterns of formal and informal support utilisation by people caring for a PWD in a rural-regional context. In-depth semi-structured interviews were conducted with 18 rural primary carers of a PWD and thematically analysed. Participant primary carers' almost total commitment to, and absorption in their role and their assumption of ultimate responsibility for the PWD's wellbeing meant that external social context, such as rurality, became less relevant. Carer networks effectively contracted to those key individuals who were central to supporting them in their caring task. External sources of support were tightly managed with strong boundaries around the provision of direct care to the PWD largely excluding all but professional providers. Primary carers are generally categorised along with other family and friends as informal care. However, in assuming primary responsible for the care and wellbeing for the PWD they effectively become the key care provider, suggesting that it would be productive in both research and practice to treat primary carers as key members of a care partnership alongside professional carers, rather than as adjuncts to formal care and/or another client.

  13. Development and psychometric properties of the Carer – Head Injury Neurobehavioral Assessment Scale (C-HINAS) and the Carer – Head Injury Participation Scale (C-HIPS): patient and family determined outcome scales

    PubMed Central

    Deb, Shoumitro; Bryant, Eleanor; Morris, Paul G; Prior, Lindsay; Lewis, Glyn; Haque, Sayeed

    2007-01-01

    Objective Develop and assess the psychometric properties of the Carer – Head Injury Participation Scale (C-HIPS) and its biggest factor the Carer – Head Injury Neurobehavioral Assessment Scale (C-HINAS). Furthermore, the aim was to examine the inter-informant reliability by comparing the self reports of individuals with traumatic brain injury (TBI) with the carer reports on the C-HIPS and the C-HINAS. Method Thirty-two TBI individuals and 27 carers took part in in-depth qualitative interviews exploring the consequences of the TBI. Interview transcripts were analysed and key themes and concepts were used to construct a 49-item and 58-item patient (Patient – Head Injury Participation Scale [P-HIPS]) and carer outcome measure (C-HIPS) respectively, of which 49 were parallel items and nine additional items were used to assess carer burden. Postal versions of the P-HIPS, C-HIPS, Mayo Portland Adaptability Inventory-3 (MPAI-3), and the Glasgow Outcome Scale-Extended (GOSE) were completed by a cohort of 113 TBI individuals and 80 carers. Data from a sub-group of 66 patient/carer pairs were used to compare inter-informant reliability between the P-HIPS and the C-HIPS, and the P-HINAS and the C-HINAS respectively. Results All individual 49 items of the C-HIPS and their total score showed good test-retest reliability (0.95) and internal consistency (0.95). Comparisons with the MPAI-3 and GOSE found a good correlation with the MPAI-3 (0.7) and a moderate negative correlation with the GOSE (−0.6). Factor analysis of these items extracted a 4-factor structure which represented the domains ‘Emotion/Behavior’ (C-HINAS), ‘Independence/Community Living’, ‘Cognition’, and ‘Physical’. The C-HINAS showed good internal consistency (0.92), test-retest reliability (0.93), and concurrent validity with one MPAI subscale (0.7). Assessment of inter-informant reliability revealed good correspondence between the reports of the patients and the carers for both the C

  14. Home-based palliative care: a systematic literature review of the self-reported unmet needs of patients and carers.

    PubMed

    Ventura, Adriana D; Burney, Susan; Brooker, Joanne; Fletcher, Jane; Ricciardelli, Lina

    2014-05-01

    There have been many studies on the unmet needs of palliative care patients and carers from the perspective of bereaved caregivers. However, the unmet needs of palliative care patients and carers from the perspective of current patients and their carers have received little research attention. As home-based services have become one of the main delivery models of palliative care, the aim of this review was to describe, evaluate and summarise the literature on the unmet needs of palliative home care patients and carers. The systematic review of qualitative and quantitative studies was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. PubMed, CINAHL, Embase, MEDLINE, PsycINFO, AMED and CareSearch were searched to find empirical studies on the self-reported unmet needs of palliative home care patients and carers. Nine qualitative studies, three quantitative studies and three mixed-design studies were identified. The most frequently reported unmet need was effective communication with health-care professionals, the lack of which negatively impacted on the care received by patients and carers. Physical care needs were met, which indicates that the examined palliative home care services were delivering satisfactory care in this domain, but lacking in other areas. The focus therefore should be on improving other aspects of patient care, including communication by health professionals to prevent or reduce suffering in areas such as psychosocial domains. Valid and reliable quantitative measures of unmet needs in palliative care are needed to examine this area more rigorously.

  15. Manipulating carer number versus brood size: complementary but not equivalent ways of quantifying carer effects on offspring

    PubMed Central

    Browning, L.E.; Russell, A.F.

    2016-01-01

    Experiments designed to quantify the effects of increasing numbers of carers on levels of offspring care are rare in cooperative breeding systems, where offspring are reared by individuals additional to the breeding pair. This paucity might stem from disagreement over the most appropriate manipulations necessary to elucidate these effects. Here, we perform both carer removal and brood enhancement experiments to test the effects of numbers of carers and carer:offspring ratios on provisioning rates in the cooperatively breeding chestnut-crowned babbler (Pomatostomus ruficeps). Removing carers caused linear reductions in overall brood provisioning rates. Further analyses failed to provide evidence that this effect was influenced by territory quality or disruption of group dynamics stemming from the removals. Likewise, adding nestlings to broods caused linear increases in brood provisioning rates, suggesting carers are responsive to increasing offspring demand. However, the 2 experiments did not generate quantitatively equivalent results: Each nestling received more food following brood size manipulation than carer removal, despite comparable carer:offspring ratios in each. Following an at-hatching split-design cross-fostering manipulation to break any links between prehatching maternal effects and posthatching begging patterns, we found that begging intensity increased in larger broods after controlling for metrics of hunger. These findings suggest that manipulation of brood size can, in itself, influence nestling provisioning rates when begging intensity is affected by scramble competition. We highlight that carer number and brood size manipulations are complimentary but not equivalent; adopting both can yield greater overall insight into carer effects in cooperative breeding systems. PMID:27418754

  16. Further explorations of illness uncertainty: carers' experiences of Parkinson's disease.

    PubMed

    Hurt, Catherine S; Cleanthous, Sophie; Newman, Stanton P

    2017-05-01

    Dominant models of illness uncertainty define uncertainty as 'an inability to determine the meaning of illness-related events'. Recent research has shown patient uncertainty to be multidimensional encompassing personal issues indirectly affected by illness. The nature of carer uncertainty has yet to be fully explored. The present study aimed to investigate the nature of illness uncertainty in the carers of patients with Parkinson's disease (PD). Eighteen carers of a spouse with PD participated in semistructured interviews. Transcripts were thematically analysed, statements were coded as uncertain if they reflected 'a lack of certainty, or a state of limited knowledge, understanding or worry regarding an existing or future outcome'. The domains of uncertainty expressed by carers closely fitted the five domain framework of patient uncertainty: symptoms and prognosis, medical management, self-management, social functioning and impact. An additional 'carer-role' domain was identified. Carer uncertainty about PD went beyond issues directly related to the illness. The findings have implications for research into uncertainty suggesting that widely used measures may not be accurately capturing the nature of carer uncertainty about chronic illness. The breadth of uncertainty reported has implications for the provision of appropriate support to improve caregiver well-being.

  17. The emotional experiences of family carers in Huntington disease

    PubMed Central

    Williams, Janet K.; Skirton, Heather; Paulsen, Jane S.; Tripp-Reimer, Toni; Jarmon, Lori; Kenney, Meghan McGonigal; Birrer, Emily; Hennig, Bonnie L.; Honeyford, Joann

    2013-01-01

    Aim This paper is a report of a study conducted to examine the emotional experience of caregiving by family carers of people with Huntington disease and to describe strategies they used to deal with that experience. Background Huntington disease, commonly diagnosed in young to middle adulthood, is an inherited single gene disorder involving loss of cognitive, motor and neuropsychiatric function. Many family members become caregivers as well as continuing as parents and wage earners. The emotional aspects of caregiving contribute to mental health risks for family members. Methods Focus groups were conducted with 42 adult carers of people with Huntington disease in four United States and two Canadian Huntington disease centers between 2001 and 2005. Data were analyzed through descriptive coding and thematic analysis. Findings All participants reported multiple aspects of emotional distress. Being a carer was described as experiencing disintegration of one’s life. Carers attempted to cope by seeking comfort from selected family members, anticipating the time when the care recipient had died and/or using prescription medications. Spousal carers were distressed by the loss of their relationship with their spouse and dealt with this by no longer regarding the person as an intimate partner. Carers were concerned about the disease risk for children in their families and hoped for a cure. Conclusion Emotional distress can compromise the well-being of family carers, who attempt to maintain multiple roles. Nurses should monitor carer mental health, identify sources of emotional distress and support effective strategies used by carers to mediate distress. PMID:19228233

  18. Consumer and carer participation in mental health care: the carer's perspective: part 1 - the importance of respect and collaboration.

    PubMed

    Goodwin, Val; Happell, Brenda

    2007-06-01

    The role of family carers in the delivery of mental health services in Australia has become more than an advantage over not having this sort of participation. Increasingly the involvement of non-paid carers (family members and significant others) has been recognised as central to the smooth delivery of care and treatment. Notwithstanding this acknowledgment, there is very little discussion of carer participation in mental health care delivery within the literature. The limited research in this area suggests that carers recognize very little opportunity for genuine participation, even less than is available to consumers. This paper presents part 1 of the findings of an exploratory, qualitative study seeking an in-depth understanding of the attitudes of carers from rural Victoria, Australia toward opportunities for participation with specific emphasis on the role of psychiatric nurses in encouraging or discouraging participation. The themes of respect and communication will be described in this paper. These findings demonstrate the variable experiences of carers in their opportunities to participate and the important role nurses can assume in supporting both carers and consumers through this process.

  19. "So that's How I Found out I Was a Young Carer and that I Actually Had Been a Carer Most of My Life". Identifying and Supporting Hidden Young Carers

    ERIC Educational Resources Information Center

    Smyth, Ciara; Blaxland, Megan; Cass, Bettina

    2011-01-01

    A common theme in the literature on care-giving is the issue of "hidden" carers, that is, people who undertake caring roles and responsibilities, yet do not identify themselves as carers. One reason people do not recognise themselves as carers relates to the nature of the caring relationship. When providing care for a family member,…

  20. Carers' representations of affective mental disorders in British Chinese communities.

    PubMed

    Koo, Kevin

    2012-11-01

    Infrequent use of and delayed presentation to professional services have increased the burden of mental illness in minority ethnic communities. Within the growing literature on informal carers, the Chinese remain relatively unstudied. This article reports a qualitative study of 14 carers to explore illness representations of affective disorders in British Chinese communities. Firstly, it places the study within a theoretical framework that permits an understanding of mental health and illness in different sociocultural belief systems. Next, it presents carers' narrative accounts in conceptualising mental illness, including its causes, manifestations and impact on patients and carers, and contextualises the findings within the existing literature. Finally, the article examines how the caring role may be constructed from the broader social experience of carers and their relationships within a community structure that values the group over the individual. Coping mechanisms are discussed in the context of the practice of caring as a moral obligation and of policy implications for more culturally appropriate support services for both Chinese carers and mental health patients.

  1. How Much Care is Enough? Carer's Guilt and Bergsonian Time.

    PubMed

    Johncock, Will

    2016-09-02

    Despite devoting their time to another person's needs, many carers paradoxically experience guilt during their caregiving tenure concerning whether they are providing enough care. When discussing the "enough" of anything, what is at stake is that thing's quantification. Given that there are seemingly no quantifiable units of care by which to measure the role, concerns regarding whether enough care is being provided often focus on what constitutes enough time as a carer. In exploring this aspect of the carer's experience, two key parameters emerge; (1) guilt, and, (2) quantified time. The guilt that carers report regarding whether they devote "enough time" to their caring responsibilities can be examined through Henri Bergson's philosophical conception of quantification. By integrating contemporary analyses of carers' guilt from the social sciences, most significantly via the sociology of Rebecca Olson, the relationship between quantified time and guilt becomes apparent. A quantified conception of time frames the assumption that spending more time on caregiving will reduce the amount of guilt felt by a carer. However, whilst care is structured according to quantified, clocked and calendared time, there are not comparable, quantifiable parameters for guilt. This means that suppositions of an inverse relationship between how much time one spends giving care, and how much guilt they will feel in terms of their caregiving, are problematic. These insights become relevant to health care policies via a coherence with calls to make the role of unpaid, caregiving, labour time more visible, and by explaining how understanding quantified time can help policies guide how caregivers negotiate guilt.

  2. Tracing the successful incorporation of assistive technology into everyday life for younger people with dementia and family carers.

    PubMed

    Arntzen, Cathrine; Holthe, Torhild; Jentoft, Rita

    2016-07-01

    Research shows that people with late-onset dementia and their relatives can benefit from using assistive technology (AT). Few researchers have investigated the use and utility of AT in everyday life for younger people with dementia (YPD) and their family carers. The aim of this study is to explore what characterised the implementation process when the AT was experienced as beneficial to the YPD and the family carer in their daily life. The qualitative longitudinal study followed 12 younger people (i.e. those under 65 years of age), who had recently been diagnosed with dementia and 14 of their family carers. In-depth interviews and observations during the process were conducted at the beginning, and were repeated every 3rd month for up to 12 months. The data were analysed, and the participants' experiences further discussed on the basis of embodied, social- and everyday life-situated approaches, in order to provide a deeper understanding of the interactive processes involved in the trajectory. Five elements in the process were identified as important for the experience of usefulness and successful incorporation of AT. The AT had to: (1) be valuable by addressing practical, emotional, and relational challenges; (2) fit well into, or be a better solution for, habitual practice and established strategies; (3) generate positive emotions, and become a reliable and trustworthy tool; (4) be user-friendly, adaptable, and manageable; and (5) interest and engage the family carer. The study demonstrated the importance of understanding the use and utility of AT on the basis of embodied and social participation in daily life. The family carers played a significant role in whether or not, and in which ways, AT was absorbed into the everyday life practice of YPD. © The Author(s) 2014.

  3. 'It was like he was in the room with us': patients' and carers' perspectives of telemedicine in acute stroke.

    PubMed

    Gibson, Josephine; Lightbody, Elizabeth; McLoughlin, Alison; McAdam, Joanna; Gibson, Alison; Day, Elaine; Fitzgerald, Jane; May, Carl; Price, Chris; Emsley, Hedley; Ford, Gary A; Watkins, Caroline

    2016-02-01

    Telemedicine can facilitate delivery of thrombolysis in acute stroke. The aim of this qualitative study was to explore patients' and carers' views of their experiences of using a stroke telemedicine system in order to contribute to the development of reliable and acceptable telemedicine systems and training for health-care staff. We recruited patients who had, and carers who were present at, recent telemedicine consultations for acute stroke in three hospitals in NW England. Semi-structured interviews were conducted using an interview guide based on normalization process theory (NPT). Thematic analysis was undertaken. We conducted 24 interviews with 29 participants (16 patients; 13 carers). Eleven interviews pertained to 'live' telemedicine assessments (at the time of admission); nine had mock-up telemedicine assessments (within 48 h of admission); four had both assessments. Using the NPT domains as a framework for analysis, factors relating to coherence (sense making) included people's knowledge and understanding of telemedicine. Cognitive participation (relational work) included interaction between staff and with patients and carers. Issues relating to collective action (operational work) included information exchange and support, and technical matters. Findings relating to reflexive monitoring (appraisal) included positive and negative impressions of the telemedicine process, and emotional reactions. Although telemedicine was well accepted by many participants, its use added an additional layer of complexity to the acute stroke consultation. The 'remote' nature of the consultation posed challenges for some patients. These issues may be ameliorated by clear information for patients and carers, staff interpersonal skills, and teamworking. © 2015 John Wiley & Sons Ltd.

  4. Perceived carer attitudes to alcohol dependent patients.

    PubMed

    Riley, A J

    1996-03-27

    Negative attitudes among carers towards people with alcohol-related problems have been reported in many studies. However, few studies have examined whether these attitudes are perceived by patients during face to face contact with healthcare professionals when receiving inpatient treatment. A sample of 26 discharged patients completed a 37-item questionnaire following treatment for alcohol problems. The Likert scale was used to measure whether patients felt that the attitude under investigation existed in the caring environment. The findings indicated that negative attitudes reported in other studies were not perceived by patients during inpatient treatment. Some barriers to treatment effectiveness such as prognostic pessimism were detected by the patients. Many upheld the view that the only goal of treatment adopted by staff was that of total abstinence. There is an increasing need to obtain feedback from patients who have received inpatient care. Greater flexibility and creativity in the care of the alcohol dependent person needs to be explored rather than the maintenance of a prescriptive approach.

  5. Service utilisation by carers of people with dementia in rural Victoria.

    PubMed

    Ervin, Kaye; Reid, Carol

    2015-12-01

    To explore the use of community and dementia-specific services by informal carers caring for someone with dementia in a rural setting. Carers of people with dementia were recruited through a variety of rural community services and invited to complete a survey related to the utilisation of community services. A total of 39 carers completed surveys. Despite 84% reporting use of the Aged Care Assessment Service and 61% reporting provision of printed information on the services available, less than half of the carers utilised commonly available support services. Only 46% received financial compensation for their carer role. Rural carers of care recipients with behavioural and psychological symptoms of dementia underutilise community services. Services that may assist with carer stress and depression and services that provide advice on the management of distressing behavioural and psychological symptoms of dementia were utilised by less than half of the carers surveyed. © 2014 AJA Inc.

  6. Carer Knowledge and Perceptions of Healthy Lifestyles for Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Melville, Craig A.; Hamilton, Sarah; Miller, Susan; Boyle, Susan; Robinson, Nicola; Pert, Carol; Hankey, Catherine R.

    2009-01-01

    Background: Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers' training needs on diet and physical activity. Methods: A cross-sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities.…

  7. Pilot Investigation of the Effectiveness of Respite Care for Carers of an Adult with Mental Illness

    ERIC Educational Resources Information Center

    Jardim, Claudia; Pakenham, Kenneth I.

    2009-01-01

    Informal carers of an adult with mental illness have asked that respite care be an integral component of mental health service provision. The present study involved a pilot investigation of the effectiveness of accessing respite care for carers of individuals with a mental illness. It was hypothesised that compared to carers who have not accessed…

  8. Carer Knowledge and Perceptions of Healthy Lifestyles for Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Melville, Craig A.; Hamilton, Sarah; Miller, Susan; Boyle, Susan; Robinson, Nicola; Pert, Carol; Hankey, Catherine R.

    2009-01-01

    Background: Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers' training needs on diet and physical activity. Methods: A cross-sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities.…

  9. Pilot Investigation of the Effectiveness of Respite Care for Carers of an Adult with Mental Illness

    ERIC Educational Resources Information Center

    Jardim, Claudia; Pakenham, Kenneth I.

    2009-01-01

    Informal carers of an adult with mental illness have asked that respite care be an integral component of mental health service provision. The present study involved a pilot investigation of the effectiveness of accessing respite care for carers of individuals with a mental illness. It was hypothesised that compared to carers who have not accessed…

  10. "It's All Changed:" Carers' Experiences of Caring for Adults Who Have Down's Syndrome and Dementia

    ERIC Educational Resources Information Center

    McLaughlin, Katrina; Jones, Aled

    2011-01-01

    A qualitative interview study was undertaken to determine the information and support needs of carers of adults who have Down's syndrome and dementia. The data were analysed thematically. Carers' information and support needs were seen to change at pre-diagnosis, diagnosis and post-diagnosis. Helping carers to manage the changing nature of the…

  11. Carer Participation: Training for People with Intellectual Disabilities in a Chinese Society

    ERIC Educational Resources Information Center

    Wong, Gary C. T.; Chan, Zenobia C. Y.

    2012-01-01

    People with intellectual disabilities require training to improve independence, and carers are important partners in the process. Studies show that carers are able to motivate family members with intellectual disabilities to participate in training. In addition, family members may serve as cotrainers. To increase carers' participation, it is…

  12. "It's All Changed:" Carers' Experiences of Caring for Adults Who Have Down's Syndrome and Dementia

    ERIC Educational Resources Information Center

    McLaughlin, Katrina; Jones, Aled

    2011-01-01

    A qualitative interview study was undertaken to determine the information and support needs of carers of adults who have Down's syndrome and dementia. The data were analysed thematically. Carers' information and support needs were seen to change at pre-diagnosis, diagnosis and post-diagnosis. Helping carers to manage the changing nature of the…

  13. Staff Carers' Understanding of End of Life Care

    ERIC Educational Resources Information Center

    Friedman, Sandra L.; Choueiri, Roula; Gilmore, Dana

    2008-01-01

    Staff carers in pediatric skilled nursing facilities (PSNF) deal directly with dying residents, and are on the forefront of communication with families. These providers have expressed misunderstandings regarding the meaning of resuscitation status and redirection of care. This descriptive study evaluated perceptions and understanding of end of…

  14. Staff Carers' Understanding of End of Life Care

    ERIC Educational Resources Information Center

    Friedman, Sandra L.; Choueiri, Roula; Gilmore, Dana

    2008-01-01

    Staff carers in pediatric skilled nursing facilities (PSNF) deal directly with dying residents, and are on the forefront of communication with families. These providers have expressed misunderstandings regarding the meaning of resuscitation status and redirection of care. This descriptive study evaluated perceptions and understanding of end of…

  15. Views of family carers and older people of information technology.

    PubMed

    Andersson, Nils-Bertil; Hanson, Elizabeth; Magnusson, Lennart

    This article is the second in a series of four describing recent developments in Sweden aimed at promoting partnerships between older people, their families and formal service providers. The last article (Vol 11(11): 759-63) described the development of an information and communication technology (ICT) project ACTION -- Assisting Carers using Telematics Interventions to meet Older persons' Needs -- and focused on the use of CT to help family carers to be more prepared for their caregiving role. This article focuses on the concept of usability within the ACTION project and the importance of working closely with participants in order to create an information and communication service that is both acceptable and of direct benefit to family members in their everyday caring situations. Nielsen's (1993) Model of Usability is described within the overall context of the project and is used as a framework for the cycle of development and testing that underpin ACTION. A variety of research methods are highlighted, with a central theme being that of user involvement, with particular reference to the USERfit approach (Poulson et al, 1996). The education and training of older people and their family carers to use the ACTION technology is outlined and examples are given of the empowering effects of the use of the service and its user-driven focus. Recommendations for the further technical development of ACTION are firmly based on the comments and suggestions provided by older people and the family carers themselves.

  16. Enhancing nurse carer partnerships: A self-directed learning approach.

    PubMed

    Cleary, Michelle; Freeman, Adele

    2006-07-01

    For many mental health consumers living in the community, friends or relatives provide day-to-day care and support. Consequently, mental health nurses are increasingly required to work collaboratively with carers and integrate their perspective into patient care. Despite this, research suggests that communication between healthcare workers and carers is poor and training in imparting information to carers effectively and encouraging their involvement has been negligible. In recognition of this, it was deemed important to develop a self-directed learning programme for mental health nurses who wish to enhance their skills in carer partnership. Many nurses are interested in developing their clinical leadership abilities and this programme provides an opportunity to demonstrate expertise through portfolio development in a key area of healthcare delivery. This innovative programme provides educative opportunities to nurses who are frequently busy, work rotating rosters, and have competing demands upon their time. It is open to all nurses irrespective of position or setting and utilises a purpose-designed workbook based on contemporary learning principles. This approach is not without its limitations however. In this paper we share our experiences and hope that it may inform others planning innovations to develop practice through education.

  17. Carer experiences of inpatient hospice care for people with dementia, delirium and related cognitive impairment.

    PubMed

    Bolton, Leanne; Loveard, Tanya; Brander, Penny

    2016-08-01

    This study aimed to explore carer experiences of inpatient unit (IPU) hospice care for people with dementia, delirium and related cognitive impairment, following implementation of the Te Kete Marie (TKM) initiative aimed at improving care for this patient group. Semi-structured interviews were undertaken with 10 carers of people affected by these conditions to ascertain their experiences of the care provided during the IPU stay. Analysis of interviews found carer experience could be described by three underlying themes: staff attunement, environmental support, and discharge preparedness, which contributed to a central theme of carer confidence. The findings suggest that carer confidence is enhanced by: staff awareness and response to individual patient needs, interests and preferences, as well as carer requirements for information and consultation; an environment that engenders experience of comfort, safety, flexibility, privacy and outdoor connection; carer preparedness for patients who subsequently transition home or to alternative residential care.

  18. Menopause experiences and attitudes in women with intellectual disability and in their family carers.

    PubMed

    Chou, Yueh-Ching; Lu, Zxy-Yann Jane; Pu, Cheng-Yun

    2013-06-01

    Little is known about how middle-aged and older women with intellectual disability (ID) cope with life transitions such as perimenopause and postmenopause. A mixed methods approach was employed to explore the attitudes toward and experiences of menopause among women with ID and their family carers in one city in Taiwan. A survey found that how the carers perceived the level of menopausal symptoms in their female family members with ID was affected by their attitudes toward menopause; and carer age and education were significant factors associated with carer menopausal attitudes. The results of in-depth interviews indicated the carers' gender, age, kinships with the women with ID, and the carers' own menopausal experiences were related to how the carers felt about the menopausal transition of the women with ID. Both quantitative and qualitative findings show that little attention has been paid to either the menopausal transition experiences or the wellbeing of women with ID.

  19. Burden and happiness in head and neck cancer carers: the role of supportive care needs.

    PubMed

    Hanly, Paul; Maguire, Rebecca; Balfe, Myles; Hyland, Philip; Timmons, Aileen; O'Sullivan, Eleanor; Butow, Phyllis; Sharp, Linda

    2016-10-01

    Our study aimed to investigate the relationship between unmet supportive care needs and carer burden and happiness, in head and neck cancer (HNC). Two hundred eighty-five HNC informal carers were sent a postal questionnaire between January and June 2014, which included the supportive care needs survey for partners and caregivers of cancer survivors (SCNS-P&C) and the CarerQol, which assesses burden and happiness. Multiple regression analysis was conducted to examine the association of (i) carer characteristics, (ii) carer situation, and (iii) unmet supportive care needs, with carer burden and happiness One hundred ninety-seven carers completed the questionnaire (response rate = 69 %), 180 of whom were included in the analysis. The majority were female (76 %), not in paid employment (68 %) and caring for their spouse (67 %). On average, carers reported relatively low levels of burden and relatively high levels of happiness. Carer factors explained 42 % of variance in levels of burden and 24 % of variance in levels of happiness. Healthcare service needs were associated with carer burden (β = .28, p = .04), while psychological needs (β = -.38, p = .028), health care service needs (β = -.30, p = .049), information needs (β = .29, p = .028), carer comorbidity (β = -.18, p = .030), and gender (β = -.16, p = .045) were associated with happiness. Our results indicate that different aspects of carer characteristics and unmet needs are associated with carer burden and happiness. Efforts directed at reducing unmet healthcare service needs in particular are merited given their associations with both aspects of carer quality of life.

  20. Collaboration in crisis: Carer perspectives on police and mental health professional's responses to mental health crises.

    PubMed

    Brennan, Alice; Warren, Narelle; Peterson, Violeta; Hollander, Yitzchak; Boscarato, Kara; Lee, Stuart

    2016-10-01

    For many situations involving a mental health crisis, carers (e.g. family or friends) are present and either attempt to help the person overcome the crisis or request assistance from professional services (e.g. mental health or police). Comparatively, little research has explored how carers experience the crisis, the professional response and how the nature of the response, in turn, impacts carers. The current study was conducted to explore these issues during individual interviews with nine carers who had previous contact with police and mental health services during a crisis response. Collected data described the definition and perceived impact of a mental health crisis for carers, how carers had experienced a crisis response from police and mental health services, and how the professional response had impacted on carers. Of importance was the finding that carers were often themselves traumatized by witnessing or being involved in the crisis, however, were rarely offered direct education or support to help them cope or prevent future crises. A number of carers described a reluctance to request assistance from professional services due to previous poor experiences. This highlighted the importance of implementing strategies to deliver more timely, respectful, specialist and collaborative crisis responses to improve carer and consumer outcomes. © 2016 Australian College of Mental Health Nurses Inc.

  1. Carers' quality of life and experiences of adult social care support in England.

    PubMed

    Rand, Stacey; Malley, Juliette

    2014-07-01

    Informal carers make a vital contribution to the well-being of the people they care for or look after. Against the policy background in England, the purpose of this study was to explore the views of carers who are in contact with adult social care support services. A qualitative study with 31 carers, who were recruited via local authorities and carers' organisations, was conducted between April and July 2012 to collect data on carers' experiences and perceptions of their quality of life (QoL) with and without adult social care and support for themselves or the person they look after. Through framework analysis, three key themes were identified: (i) definitions of social care services 'for' the carer or 'for' care recipient and social care outcomes; (ii) carers' access to social care services; and (iii) the meaning and value of informal care. We find that carers' QoL is affected by social care support directed at carers and support directed at those they care for, as well as access to services, the experience of stigma in communities, and in how individual needs and preferences are considered when making decisions about care. While there is much to welcome in the direction of policy in England, this study has shown that there are some gaps in thinking around these areas that will need to be addressed if the lives of carers are to be improved.

  2. Managing hope, denial or temporal anomie? Informal cancer carers' accounts of spouses' cancer diagnoses.

    PubMed

    Olson, Rebecca Eileen

    2011-09-01

    Carers of cancer patients' emotional responses to cancer diagnoses have been a central focus within psycho-oncology. Some of this literature asserts that the maladaptive coping strategy denial is prevalent amongst carers. Using semi-structured, longitudinal interviews with 32 Australian Capital Territory carers of a spouse with cancer and an interactionist sociology of emotions framework to understanding their emotions, this study aimed to both contribute to the literature on cancer carers' coping strategies and provide a richer sociological depiction of carers' emotional reactions to a cancer diagnosis. The results raise questions about the value of singularly examining denial in cancer carers. Instead, these data suggest that carers use a range of coping strategies in the short-term and do emotion work to adapt to a challenged temporal orientation. The term temporal anomie is offered to describe carers' disrupted orientations in time and facilitate further discussion on the link between time and emotion work. Findings also show the importance of medical professionals' casting of the prognosis, from imminent death to certain future, to this temporal re-orientation and emotion work process. Instead of 'managing hope,' as much of the cancer communication literature describes it, findings suggest that physicians address cancer carers' and patients' temporal anomie. Future research might benefit from moving beyond individualistic conceptualisations of carers' emotions to include the cultural, temporal and interactionist influences. Copyright © 2011 Elsevier Ltd. All rights reserved.

  3. In Their Own Words: How Family Carers of People with Dementia Understand Resilience.

    PubMed

    O'Dwyer, Siobhan T; Moyle, Wendy; Taylor, Tara; Creese, Jennifer; Zimmer-Gembeck, Melanie

    2017-08-21

    There is a growing body of research on resilience in family carers of people with dementia, but carers' voices are noticeably absent from it. The aim of this study was to explore carers' definitions of resilience and their opinions on the factors associated with resilience. Twenty-one in-depth interviews were conducted in Australia with people who were currently, or had previously been, caring for a family member with dementia. Transcripts were analysed thematically and three themes emerged: the presence of resilience, the path to resilience, and characteristics of the resilient carer. Although carers struggled to define resilience, the vast majority considered themselves resilient. Carers identified a range of traits, values, environments, resources, and behaviours associated with resilience, but there was no consensus on the relative importance or causal nature of these factors. Carers also considered resilience to be domain- and context-specific, but did not agree on whether resilience was a trait or a process. These findings highlight both the importance of including carers' voices in resilience research and the limitations of the extant literature. There is much to be done to develop a field of carer resilience research that is theoretically sound, methodologically rigorous, and reflects the lived experience of carers. A model is provided to prompt future research.

  4. The Formal Support Experiences of Family Carers of People with an Intellectual Disability Who Also Display Challenging Behaviour and/or Mental Health Issues: What Do Carers Say?

    ERIC Educational Resources Information Center

    James, Neil

    2013-01-01

    This article reports the findings of a literature review of research that has explored the support experiences of family carers of a person with an intellectual disability who displays challenging behaviour and/or has a mental health problem. The purpose of this review is to provide an overview of the reported experiences of family carers from…

  5. The Formal Support Experiences of Family Carers of People with an Intellectual Disability Who Also Display Challenging Behaviour and/or Mental Health Issues: What Do Carers Say?

    ERIC Educational Resources Information Center

    James, Neil

    2013-01-01

    This article reports the findings of a literature review of research that has explored the support experiences of family carers of a person with an intellectual disability who displays challenging behaviour and/or has a mental health problem. The purpose of this review is to provide an overview of the reported experiences of family carers from…

  6. Carers' Medication Administration Errors in the Domiciliary Setting: A Systematic Review

    PubMed Central

    Garfield, Sara; Vincent, Charles; Franklin, Bryony Dean

    2016-01-01

    Purpose Medications are mostly taken in patients’ own homes, increasingly administered by carers, yet studies of medication safety have been largely conducted in the hospital setting. We aimed to review studies of how carers cause and/or prevent medication administration errors (MAEs) within the patient’s home; to identify types, prevalence and causes of these MAEs and any interventions to prevent them. Methods A narrative systematic review of literature published between 1 Jan 1946 and 23 Sep 2013 was carried out across the databases EMBASE, MEDLINE, PSYCHINFO, COCHRANE and CINAHL. Empirical studies were included where carers were responsible for preventing/causing MAEs in the home and standardised tools used for data extraction and quality assessment. Results Thirty-six papers met the criteria for narrative review, 33 of which included parents caring for children, two predominantly comprised adult children and spouses caring for older parents/partners, and one focused on paid carers mostly looking after older adults. The carer administration error rate ranged from 1.9 to 33% of medications administered and from 12 to 92.7% of carers administering medication. These included dosage errors, omitted administration, wrong medication and wrong time or route of administration. Contributory factors included individual carer factors (e.g. carer age), environmental factors (e.g. storage), medication factors (e.g. number of medicines), prescription communication factors (e.g. comprehensibility of instructions), psychosocial factors (e.g. carer-to-carer communication), and care-recipient factors (e.g. recipient age). The few interventions effective in preventing MAEs involved carer training and tailored equipment. Conclusion This review shows that home medication administration errors made by carers are a potentially serious patient safety issue. Carers made similar errors to those made by professionals in other contexts and a wide variety of contributory factors were

  7. The stigma of being a long-term foster carer.

    PubMed

    Blythe, Stacy L; Jackson, Debra; Halcomb, Elizabeth J; Wilkes, Lesley

    2012-05-01

    Stigma is a powerful social phenomenon with insidious health implications. Understanding stigma as it applies to various populations is imperative for nurses as it enables nurses to enhance individual patient care and nurses are well positioned to influence both social and health care policies which may exacerbate the experience of stigma. This article is a report of a study to explore the experiences of women who provide long-term foster care. Interviews were conducted with 20 women who provided long-term foster care in Australia. Data were coded according to the components of stigma described by Link and Phelan (2001). Findings reveal participants rejected the label of foster carer to avoid the negative stereotype. When unable to conceal their foster carer label, participants experienced social isolation and status loss. Moreover, participants felt marginalized and disempowered within the governing systems.

  8. The earnings of informal carers: wage differentials and opportunity costs.

    PubMed

    Heitmueller, Axel; Inglis, Kirsty

    2007-07-01

    A substantial proportion of working age individuals in Britain are looking after sick, disabled or elderly people, often combining their work and caring responsibilities. Previous research has shown that informal care is linked with substantial opportunity costs for the individual due to forgone wages as a result of non-labour market participation. In this paper we show that informal carers exhibit further disadvantages even when participating. Using the British Household Panel Study (BHPS) we decompose wage differentials and show that carers can expect lower returns for a given set of characteristics, with this wage penalty varying along the pay distribution and by gender. Furthermore, opportunity costs from forgone wages and wage penalties are estimated and found to be substantial.

  9. Interventions for the Carers of Patients With Eating Disorders.

    PubMed

    Treasure, Janet; Nazar, Bruno Palazzo

    2016-02-01

    The aim of this study is to evaluate the recent literature on carers/parenting interventions for people with eating disorders. Interesting and important new findings are highlighted as well as the implications that this may have for treatment. We have reviewed and critically analysed the recent literature. Close others often play an important role in recognising the early signs of eating disorders and accessing and implementing treatment. Their role in helping with recovery is to give support and hold a united front themselves and with the professional team to avoid those common interpersonal reactions that adversely impact on outcome such as accommodating to the illness and reacting with high expressed emotion (overprotection and hostility). Managing this role is difficult, and coping resources are often strained. Carers ask for and are now getting expert training in skills to manage this role. There is an overlap between carer/parenting interventions and family therapies. The interface with close others is critical both for early recognition and access and implementation of treatment. Interventions which equip families and close others with the skills to manage eating disorder behaviours are showing potential at improving outcomes.

  10. Predictors of mental health problems and negative caregiving experiences in carers of adolescents with bulimia nervosa.

    PubMed

    Winn, Suzanne; Perkins, Sarah; Walwyn, Rebecca; Schmidt, Ulrike; Eisler, Ivan; Treasure, Janet; Berelowitz, Mark; Dodge, Liz; Frost, Susie; Jenkins, Mari; Johnson-Sabine, Eric; Keville, Saskia; Murphy, Rebecca; Robinson, Paul; Yi, Irene

    2007-03-01

    This exploratory study focuses on the mental health (MH) and caregiving experience of carers of adolescents with Bulimia Nervosa (BN)/Eating Disorder not otherwise specified (EDNOS), aiming to determine: levels of MH problems in carers and if a negative experience of caregiving predicts carer MH status and which factors predict a negative experience of caregiving. Hundred and twelve carers and 68 adolescents with BN/EDNOS completed self-report measures (General Health Questionnaire, Experience of Caregiving Inventory, Level of Expressed Emotion, Self-report Family Inventory, Inventory of Interpersonal Problems). Over half of the carers reported some MH problems and a minority (5.4%) were experiencing considerable difficulties. A negative experience of caregiving predicted carer MH status. Higher weekly contact hours and patient ratings of expressed emotion (EE) predicted a negative experience of caregiving. Interventions focusing on reducing EE and contact hours could prove beneficial for both patient and caregiver outcomes. 2006 by Wiley Periodicals, Inc.

  11. A collaborative care skills workshop for carers: Can it be delivered in 1 day?

    PubMed

    Jenkins, Paul E; Bues, Sonia; Cottrell, Julie; Hawkins, Joel; Pinder, Laura; Price, Susan; Stewart, Anne

    2017-08-07

    Carers of individuals with eating disorders (EDs) report high levels of burden and distress and describe a number of unmet needs. As a result, a number of interventions have been designed to support carers, including the "Maudsley eating disorder collaborative care skills workshops," which comprise six 2-hr workshops delivered over 3 months for parents and carers of people with EDs. The current study aimed to test a proof-of-concept that this workshop could be effectively delivered in 1 day. An additional aim was to assess whether the workshop had direct effects on carer skills. A nonexperimental repeated measures research design was employed, giving measures before and after a 1-day workshop. Results suggested significant increases in carer self-efficacy and carer skills, with moderate to large effect sizes. Qualitative analyses supported these results whilst also generating ideas to improve the 1-day workshop. Copyright © 2017 John Wiley & Sons, Ltd.

  12. Physiological reactivity to spontaneously occurring seizure activity in dogs with epilepsy and their carers.

    PubMed

    Packer, R M A; Volk, H A; Fowkes, R C

    2017-08-01

    There is a complex bidirectional relationship between stress and epilepsy. Stressful stimuli and subsequent cortisol release act as a trigger for seizure activity in some individuals with epilepsy, and seizure activity itself may act as a stressor to the affected individual. Epilepsy is the most common chronic neurological condition in domestic dogs and requires chronic management by their human carers, impacting upon the quality of life of both dog and carer. Seizures occur unpredictably and may be stressful for carers to witness and manage. In the present study we investigated the role of seizure activity as a stressor, measuring the effect of spontaneously occurring seizure activity in dogs with epilepsy upon their own cortisol levels and that of their carers. Furthermore, we tested whether individual differences in HPA reactivity were associated with owner personality characteristics and the quality of the dog-carer relationship. Saliva samples were obtained from sixteen dog-carer dyads in the home setting 20 and 40minute post-seizure, and at time-matched points on the following (non-seizure) day. Significant differences in cortisol levels were found in dogs at 40minute post-seizure (265.1% increase), and at 20minute post-seizure in their carers (40.5% increase). No associations were found between cortisol reactivity and the strength of the dog-carer bond. Carers with higher neuroticism scores exhibited higher cortisol levels at both post-seizure sampling points. As there was a gender bias in the carer sample (15/16 were female), and there are known sex differences in cortisol reactivity in response to psychological stress, the conclusions of this study may be limited to female carers. These findings are the first to objectively demonstrate the acutely stressful effects of seizures in dogs with epilepsy and their carers. Copyright © 2017 Elsevier Inc. All rights reserved.

  13. Ambiguity in practice? Carers' roles in personalised social care in England.

    PubMed

    Glendinning, Caroline; Mitchell, Wendy; Brooks, Jenni

    2015-01-01

    Carers play an ambiguous role within the personalisation paradigm currently shaping adult social care practice in England. Although carers have rights to assessments and support in their own right, these rights sit uneasily alongside the practices of assessment, support planning and personal budget (PB) allocation for older and disabled people. This paper reports how 14 dyads of older and learning disabled people with cognitive and/or communication impairments and their carers viewed the roles - desired and actual - played by carers in PBs. Interviews with carers and with older and disabled people were conducted during 2012 as part of a wider study into carers' roles in assessment, support planning and managing PBs. The interviews complemented a survey of reported practice in two English regions - interviews with adult social care services senior managers and focus groups with front-line care managers. Talking Mats(©) were used to support interviews with some service users. Interviews were transcribed and data analysed using the Framework approach. The interviews indicated that carers played important roles in service users' assessments and support planning, but were less likely to report receiving assessments or support of their own. While carers had the potential to benefit from PBs and support arrangements for service users, this did not reflect practice that aimed to enhance choice and control for carers. The paper draws on Twigg's typology of service conceptualisations of family carers and concludes that, despite the important social rights won by carers in England, current practice continues to regard carers primarily as a resource or a co-worker, rather than a co-client.

  14. Carers' experiences of dysphagia in people treated for head and neck cancer: a qualitative study.

    PubMed

    Nund, Rebecca L; Ward, Elizabeth C; Scarinci, Nerina A; Cartmill, Bena; Kuipers, Pim; Porceddu, Sandro V

    2014-08-01

    The implication of dysphagia for people treated nonsurgically for head and neck cancer (HNC) and its detrimental effects on functioning and quality of life has been well documented. To date, however, there has been a paucity of research on the effects of dysphagia following HNC on carers, independent of the consequences of a gastrostomy. The objective of this qualitative study was to report on the experiences of carers of people with dysphagia (non-gastrostomy dependent) following nonsurgical treatment for HNC and to identify the support needs of this group. A purposive, maximum-variation sampling technique was adopted to recruit 12 carers of people treated curatively for HNC since 2007. Each participated in an in-depth interview, detailing their experience of caring for someone with dysphagia and the associated impact on their life. Thematic analysis was adopted to search the transcripts for key phases and themes that emerged from the discussions. Analysis of the transcripts revealed four themes: (1) dysphagia disrupts daily life, (2) carers make adjustments to adapt to their partner's dysphagia, (3) the disconnect between carers' expectations and the reality of dysphagia, and (4) experiences of dysphagia-related services and informal supports. Carers generally felt ill-prepared for their role in dysphagia management. The qualitative methodology successfully described the impact of dysphagia on the everyday lives of carers, particularly in regard to meal preparation, social events, and family lifestyle. Clinicians should provide adequate and timely training and support to carers and view carers as copartners in dysphagia management.

  15. Interactive health communication applications for chronic disease: patient and carer perspectives.

    PubMed

    Kerr, C; Murray, E; Stevenson, F; Gore, C; Nazareth, I

    2005-01-01

    Interactive health communication applications (IHCAs) may be particularly useful to patients and carers managing chronic disease. We have run eight focus groups with patients and two with carers involving a total of 40 participants. The focus groups were designed to seek patients' and carers' requirements of IHCAs and to identify the criteria they would use to assess them. Analysis revealed that many participants saw the value and potential of IHCAs. Even those with modest previous computer experience could use them with little tuition. The findings from this study have policy implications for the development of applications to maximize the potential benefit of IHCAs to patients and carers.

  16. Enabling the health and wellbeing of carers through district nursing support.

    PubMed

    Laing, Michelle; Sprung, Sally

    2014-07-01

    Carers provide care because they want to help the people they care about, and because their care recipient could not manage without them. For many carers, looking after their own health, combining caring with work, getting access to training or having time off can be a major challenge. Patients' and carers' experiences of home-based care are a key factor in the appraisal of the quality of the professional care services they receive. This article presents the evidence from a literature review that builds a substantial body of knowledge to inform district nursing teams and community nurses to develop a supportive approach towards carers' needs. The aim of the study was to appraise the published evidence base relating to carers' needs and how professionals can support carers' needs when providing care to patients in the community. The studies consistently reported carers' requirements of practical support and information as a theme across studies, suggesting that effective ways of delivering information and support to caregivers need to be developed and implemented as a matter of priority. It also highlighted the needs of the professionals providing support to carers, to ensure the health and wellbeing needs of carers, to include signposting and referral to avoid reaching crisis point and resultant burnout.

  17. Perspectives of carers on medication management in dementia: lessons from collaboratively developing a research proposal

    PubMed Central

    2014-01-01

    Background The need for carers to manage medication-related problems for people with dementia living in the community raises dilemmas, which can be identified by carers and people with dementia as key issues for developing carer-relevant research projects. A research planning Public Patient Involvement (PPI) workshop using adapted focus group methodology was held at the Alzheimer’s Society’s national office, involving carers of people with dementia who were current members of the Alzheimer’s Society Research Network (ASRN) in dialogue with health professionals aimed to identify key issues in relation to medication management in dementia from the carer viewpoint. The group was facilitated by a specialist mental health pharmacist, using a topic guide developed systematically with carers, health professionals and researchers. Audio-recordings and field notes were made at the time and were transcribed and analysed thematically. The participants included nine carers in addition to academics, clinicians, and staff from DeNDRoN (Dementias and Neurodegenerative Diseases Research Network) and the Alzheimer’s Society. Findings Significant themes, for carers, which emerged from the workshop were related to: (1) medication usage and administration practicalities, (2) communication barriers and facilitators, (3) bearing and sharing responsibility and (4) weighing up medication risks and benefits. These can form the basis for more in-depth qualitative research involving a broader, more diverse sample. Discussion The supported discussion enabled carer voices and perspectives to be expressed and to be linked to the process of identifying problems in medications management as directly experienced by carers. This was used to inform an agenda for research proposals which would be meaningful for carers and people with dementia. PMID:25048052

  18. Family work in anorexia nervosa: a qualitative study of carers' experiences of two methods of family intervention.

    PubMed

    Whitney, Jenna; Currin, Laura; Murray, Joanna; Treasure, Janet

    2012-03-01

    Qualitative methods can aid in the development of complex interventions. Qualitative methodology was used to examine treatment efficacy, carer satisfaction and process of change in carers of people with anorexia nervosa who participated in a randomised controlled trial (RCT) comparing individual family work (IFW) and multi-(dual) family workshops. Twenty-three carers were interviewed. Themes were developed using Interpretive Phenomenological Analysis (IPA). Carers who worked with another family described this as beneficial. There was dissatisfaction about a lack of structure perceived in the IFW. Most carers felt the interventions helped them communicate, understand the illness and gain personal and familial insight. Although there was lack of consensus on the most helpful techniques, carers felt sessions should focus on individual relationships and practical guidance for challenging behaviour. Carers valued structured, skills-based interventions. The inclusion of multiple families may reduce carer blame and isolation and facilitate skills-based learning. Copyright © 2011 John Wiley & Sons, Ltd and Eating Disorders Association.

  19. The role of the Carer Support Needs Assessment Tool in palliative home care: A qualitative study of practitioners' perspectives of its impact and mechanisms of action.

    PubMed

    Ewing, Gail; Austin, Lynn; Grande, Gunn

    2016-04-01

    The importance of supporting family carers is well recognised in healthcare policy. The Carer Support Needs Assessment Tool is an evidence-based, comprehensive measure of carer support needs to facilitate carer support in palliative home care. To examine practitioner perspectives of the role of the Carer Support Needs Assessment Tool intervention in palliative home care to identify its impact and mechanisms of action. Qualitative - practitioner accounts of implementation (interviews, focus groups, reflective audio diaries) plus researcher field notes. A total of 29 staff members from two hospice home-care services - contrasting geographical locations, different service sizes and staff composition. A thematic analysis was conducted. Existing approaches to identification of carer needs were informal and unstructured. Practitioners expressed some concerns, pre-implementation, about negative impacts of the Carer Support Needs Assessment Tool on carers and expectations raised about support available. In contrast, post-implementation, the Carer Support Needs Assessment Tool provided positive impacts when used as part of a carer-led assessment and support process: it made support needs visible, legitimised support for carers and opened up different conversations with carers. The mechanisms of action that enabled the Carer Support Needs Assessment Tool to make a difference were creating space for the separate needs of carers, providing an opportunity for carers to express support needs and responding to carers' self-defined priorities. The Carer Support Needs Assessment Tool delivered benefits through a change in practice to an identifiable, separate assessment process for carers, facilitated by practitioners but carer-led. Used routinely with all carers, the Carer Support Needs Assessment Tool has the potential to normalise carer assessment and support, facilitate delivery of carer-identified support and enable effective targeting of resources. © The Author(s) 2015.

  20. Against the odds: foster carers' perceptions of family, commitment and belonging in successful placements.

    PubMed

    Oke, Nicholas; Rostill-Brookes, Helen; Larkin, Michael

    2013-01-01

    This study examines carer attributes associated with placement stability for teenagers growing up in long term foster care, focusing on unexpected placement success. We explored experiences and perceptions relating to family, belonging and commitment in a group of foster carers providing a stable placement for a young person who had not been expected to settle. These placements showed positive outcome, despite factors in the child's history that might have predicted otherwise. Seven foster carers were interviewed following a semi-structured guide, which covered their ideas about their relationship with the child in question, about the foster family, and the child's sense of belonging in foster and birth family. Analysis of carers' accounts of placements which had succeeded 'against the odds' revealed four major themes, described under the headings My Child--emotional bonding, the carers' enlarged view of family and their parental regard for the young person; Jam in the Sandwich--working within a 'compromised space' between Local Authority and birth family; Repair and Rebuild--the craft of fostering including managing the foster/birth family boundary; Sticking with It--resilience, tenacity and maintaining hopefulness. The carers' accounts offer pointers towards the ingredients of successful placements and prompt reflection on how these may be supported and promoted. They also highlight tensions inherent in the foster carer task relating to carers' parental functioning for young people in long-term foster care.

  1. A 10-year Plan for Quality Living for People with Disabilities and Their Carers

    ERIC Educational Resources Information Center

    Craig, Jocelyn E.; Cartwright, Collen

    2015-01-01

    Background: The concerns of older carers of an adult with disabilities have been well documented. The sudden incapacity or death of the carer can result in a crisis response rather than a planned transition to a chosen sustainable alternative care arrangement for the person with disability. Building on previous "Futures Planning"…

  2. Residential Carers' Knowledge and Attitudes towards Physiotherapy Interventions for Adults with Learning Disabilities

    ERIC Educational Resources Information Center

    Stewart, Stephen; Macha, Ruth; Hebblethwaite, Amy; Hames, Annette

    2009-01-01

    Through the use of face-to-face interviews, this article explores residential carers' perceptions and understanding of a physiotherapy service provided to patients with a learning disability, with the aim of highlighting potential areas for improvement in the service. Carers involved in the study reported a good relationship with the…

  3. The Internet as Social Support for Older Carers of Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Perkins, Elizabeth A.; LaMartin, Kimberly M.

    2012-01-01

    Social support is a potentially powerful mediator of well-being for family carers. Given that social engagement often decreases with age, the Internet broadens the opportunities for aging carers of individuals with intellectual and developmental disabilities (I/DD) to provide support to one another. This article reviews what constitutes social…

  4. Occupational therapy influence on a carer peer support model in a clinical mental health service.

    PubMed

    Bourke, Cate; Sanders, Bronwyn; Allchin, Becca; Lentin, Primrose; Lang, Shannon

    2015-10-01

    Current policy frameworks call for the participation of consumers and carers in all levels of mental health service delivery in Australia. Such inclusion leads to better outcomes for all, however, it is recognised that carers have needs and occupations beyond their carer role. The aim of this article is to describe an innovative carer peer support program developed by a group of occupational therapists. The article describes the rationale, phases of development and the role that occupational therapists played in developing and sustaining the model. This is followed by an exploration of the occupational therapy attitudes, knowledge and skills that contributed to the conceptualisation and implementation of the model. Five occupational therapists engaged in a review process involving documentation, literature review, evaluation, reflection and discussion. Four of the occupational therapists had either coordinated or managed the service described. The fifth author facilitated the process. Review of the model indicates it equips carers to perform their caring occupation and helps carers recognise the need for occupations beyond caring, for their health and wellbeing. Employing carers as paid workers values their 'real life' experience in their caring occupation. Findings also illustrate that the attitudes, knowledge, skills and competency standards of occupational therapists are well suited in enabling this emerging area of service delivery. Although this model has been developed in a clinical mental health setting, the key principles could be applied with carers or consumers across a variety of settings in which occupational therapists are employed. © 2015 Occupational Therapy Australia.

  5. Carer Knowledge and Experiences with Menopause in Women with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Willis, Diane S.; Wishart, Jennifer G.; Muir, Walter J.

    2010-01-01

    Overall life expectancy for women with intellectual disabilities (ID) is now significantly extended, and many will live long enough to experience menopause. Little is known about how carers support women with ID through this important stage in their lives. This study investigated carer knowledge of how menopause affects women with ID under their…

  6. Mediators of Well-Being in Ageing Family Carers of Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Minnes, Patricia; Woodford, Lynn; Passey, Jennifer

    2007-01-01

    Background: Increasing numbers of adults with an intellectual disability are being cared for at home by ageing parents. The purpose of this study was to determine whether carer resources (i.e. social support and formal service use) and carer appraisals of ageing and stress/burden mediate the relationships between (1) maladaptive behaviour and…

  7. Family Carers' Experiences Using Support Services in Europe: Empirical Evidence from the EUROFAMCARE Study

    ERIC Educational Resources Information Center

    Lamura, Giovanni; Mnich, Eva; Nolan, Mike; Wojszel, Beata; Krevers, Barbro; Mestheneos, Liz; Dohner, Hanneli

    2008-01-01

    Purpose: This article explores the experiences of family carers of older people in using support services in six European countries: Germany, Greece, Italy, Poland, Sweden, and the UK. Design and Methods: Following a common protocol, data were collected from national samples of approximately 1,000 family carers per country and clustered into…

  8. Depressive Symptoms in Older Female Carers of Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Chou, Y. C.; Pu, C-Y.; Fu, L-Y.; Kroger, T.

    2010-01-01

    Background: This survey study aims to examine the prevalence and factors associated with depressive symptoms among primary older female family carers of adults with intellectual disabilities (ID). Method: In total, 350 female family carers aged 55 and older took part and completed the interview in their homes. The survey package contained…

  9. Reporting of Health Problems and Pain by Adults with an Intellectual Disability and by Their Carers

    ERIC Educational Resources Information Center

    Turk, Vicky; Khattran, Sukhjinder; Kerry, Sally; Corney, Roslyn; Painter, Kerry

    2012-01-01

    Background: Information about the health of people with ID is usually obtained from professionals and carers. Little is known about what health problems people with ID report they experience, and whether this differs from their carers' reports. Method: A secondary analysis of health information provided by participants with ID and/or their matched…

  10. Sense of coherence, burden, and affective symptoms in family carers of people with dementia.

    PubMed

    Orgeta, Vasiliki; Sterzo, Elena Lo

    2013-06-01

    Caring for a relative with dementia has been associated with high levels of psychological morbidity in carers. Sense of coherence is an important resource of successful coping with caregiving. The purpose of the present study was to examine the relationship between stress associated with caregiving, sense of coherence, and self-reported depression and anxiety in family carers of people with dementia. We hypothesized that carers reporting high levels of anxiety and depression will report low levels of coherence, and that the relationship between caregiver stress and affective symptoms will be mediated by sense of coherence. A total of 170 carers of people with dementia took part in the present study. Family carers completed the Sense of Coherence Scale, the Relative Stress Scale, and the Hospital Anxiety and Depression Scale. A series of multiple linear regressions were conducted to examine the relationship between stress related to caregiving, caregiver anxiety and depression, and whether sense of coherence mediated this relationship. Self-reported anxiety and depression were associated with low levels of sense of coherence. Sense of coherence mediated the relationship between burden and self-reported depressive effect and anxiety symptoms. Carers reporting high levels of anxiety and depression are more likely to report low levels of sense of coherence. The relationship between stress related to caregiving and depressive symptoms is mediated by carers' self-reported sense of coherence. Future psychotherapeutic intervention studies in family carers of people with dementia may incorporate strategies that specifically target sense of coherence.

  11. Residential Carers' Knowledge and Attitudes towards Physiotherapy Interventions for Adults with Learning Disabilities

    ERIC Educational Resources Information Center

    Stewart, Stephen; Macha, Ruth; Hebblethwaite, Amy; Hames, Annette

    2009-01-01

    Through the use of face-to-face interviews, this article explores residential carers' perceptions and understanding of a physiotherapy service provided to patients with a learning disability, with the aim of highlighting potential areas for improvement in the service. Carers involved in the study reported a good relationship with the…

  12. Effects of information and training provision in satisfaction of patients and carers in stroke rehabilitation.

    PubMed

    Aguirrezabal, Aizpea; Duarte, Esther; Rueda, Nohora; Cervantes, Cristina; Marco, Ester; Escalada, Ferran

    2013-01-01

    Active information and training improves patient and carer knowledge of stroke and aspects of patient satisfaction, as well as reduces patient depression. To evaluate the effect of a post-stroke information and carer training intervention provided in the rehabilitation hospital setting on patient and carers' satisfaction. Nonrandomized, controlled trial with 241 patients consecutively admitted in a post-stroke rehabilitation unit and their carers. The first 140 underwent a standard rehabilitation program (control group) and the 131 following attended an additional class (intervention group). Satisfaction was assessed with the Satisfaction Pound Scale administered by telephone 6 months after stroke in 74 patients and 85 carers from the control group and in 76 patients and 73 carers from the intervention group. Over 80% of patients in both groups were satisfied with information, care and therapy during hospitalization. The amount of therapy and support at discharge were the issues that arouse greater dissatisfaction. Patient and carers' satisfaction with information, support and accessibility to rehabilitation team after hospital discharge improved after the intervention (p < 0.001). Systematic active information, training and community support provision for stroke patients and carers improves satisfaction with stroke rehabilitation programs and support received after hospital discharge.

  13. A randomised controlled trial of carer-focussed multi-family group psychoeducation in bipolar disorder.

    PubMed

    Madigan, K; Egan, P; Brennan, D; Hill, S; Maguire, B; Horgan, F; Flood, C; Kinsella, A; O'Callaghan, E

    2012-05-01

    In a RCT of family psychoeducation, 47 carers of 34 patients were allocated to one of three groups; Multifamily Group Psychoeducation, Solution Focussed Group Therapy or Treatment as Usual. Carers in both the MFGP intervention and the SFGP arm demonstrated greater knowledge and reduction in burden than those in the TAU arm. Copyright © 2011. Published by Elsevier SAS.

  14. Family Carers' Experiences Using Support Services in Europe: Empirical Evidence from the EUROFAMCARE Study

    ERIC Educational Resources Information Center

    Lamura, Giovanni; Mnich, Eva; Nolan, Mike; Wojszel, Beata; Krevers, Barbro; Mestheneos, Liz; Dohner, Hanneli

    2008-01-01

    Purpose: This article explores the experiences of family carers of older people in using support services in six European countries: Germany, Greece, Italy, Poland, Sweden, and the UK. Design and Methods: Following a common protocol, data were collected from national samples of approximately 1,000 family carers per country and clustered into…

  15. Carer Knowledge and Experiences with Menopause in Women with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Willis, Diane S.; Wishart, Jennifer G.; Muir, Walter J.

    2010-01-01

    Overall life expectancy for women with intellectual disabilities (ID) is now significantly extended, and many will live long enough to experience menopause. Little is known about how carers support women with ID through this important stage in their lives. This study investigated carer knowledge of how menopause affects women with ID under their…

  16. Effective Communication Training Interventions for Paid Carers Supporting Adults with Learning Disabilities

    ERIC Educational Resources Information Center

    Kyle, Seonaid; Melville, Craig A.; Jones, Andrea

    2010-01-01

    Carer communication skills contribute to the well being of individuals with learning disabilities. Few studies have examined the effectiveness of communication training interventions, and there is a lack of robust measures of outcome. A communication self-efficacy measure relevant to carers supporting adults with learning disabilities was…

  17. Reporting of Health Problems and Pain by Adults with an Intellectual Disability and by Their Carers

    ERIC Educational Resources Information Center

    Turk, Vicky; Khattran, Sukhjinder; Kerry, Sally; Corney, Roslyn; Painter, Kerry

    2012-01-01

    Background: Information about the health of people with ID is usually obtained from professionals and carers. Little is known about what health problems people with ID report they experience, and whether this differs from their carers' reports. Method: A secondary analysis of health information provided by participants with ID and/or their matched…

  18. Assessing the Communication Skills of Carers Working with Multiple Learning Disabilities: A Case Study

    ERIC Educational Resources Information Center

    Koski, Katja; Launonen, Kaisa

    2012-01-01

    Background: Speech and language therapists (SLTs) working with adults who have multiple learning disabilities and complex communication needs often deliver their care via indirect therapy where SLTs train carers to communicate with their clients. Yet, very little is known about how SLTs assess the carers' communication skills prior to the training…

  19. Service Users and Carers: Preparing to Be Involved in Work-Based Practice Assessment

    ERIC Educational Resources Information Center

    Dearnley, Christine; Coulby, Ceridwen; Rhodes, Christine; Taylor, Jill; Coates, Catherine

    2011-01-01

    This paper will provide an overview of the specific issues related to involving service users and carers in work-based practice assessment of health and social care students. The outcomes of a shared workshop that involved service users and carers, practice assessors and students in the development of an interprofessional assessment tool, will be…

  20. Attitude to Medication of Parents/Primary Carers of People With Intellectual Disability

    ERIC Educational Resources Information Center

    Rasaratnam, R.; Crouch, K.; Regan, A.

    2004-01-01

    To investigate the influence of attitudes of carers of people with intellectual disability (ID) towards giving medication. Ninety-three carers of service users who are currently attending outpatients clinic (Harrow Learning Disability service) were interviewed, using the RAMS (Rating of Attitude to Medication Scale) interview schedule. A…

  1. Service Users and Carers: Preparing to Be Involved in Work-Based Practice Assessment

    ERIC Educational Resources Information Center

    Dearnley, Christine; Coulby, Ceridwen; Rhodes, Christine; Taylor, Jill; Coates, Catherine

    2011-01-01

    This paper will provide an overview of the specific issues related to involving service users and carers in work-based practice assessment of health and social care students. The outcomes of a shared workshop that involved service users and carers, practice assessors and students in the development of an interprofessional assessment tool, will be…

  2. Effective Communication Training Interventions for Paid Carers Supporting Adults with Learning Disabilities

    ERIC Educational Resources Information Center

    Kyle, Seonaid; Melville, Craig A.; Jones, Andrea

    2010-01-01

    Carer communication skills contribute to the well being of individuals with learning disabilities. Few studies have examined the effectiveness of communication training interventions, and there is a lack of robust measures of outcome. A communication self-efficacy measure relevant to carers supporting adults with learning disabilities was…

  3. A 10-year Plan for Quality Living for People with Disabilities and Their Carers

    ERIC Educational Resources Information Center

    Craig, Jocelyn E.; Cartwright, Collen

    2015-01-01

    Background: The concerns of older carers of an adult with disabilities have been well documented. The sudden incapacity or death of the carer can result in a crisis response rather than a planned transition to a chosen sustainable alternative care arrangement for the person with disability. Building on previous "Futures Planning"…

  4. The Internet as Social Support for Older Carers of Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Perkins, Elizabeth A.; LaMartin, Kimberly M.

    2012-01-01

    Social support is a potentially powerful mediator of well-being for family carers. Given that social engagement often decreases with age, the Internet broadens the opportunities for aging carers of individuals with intellectual and developmental disabilities (I/DD) to provide support to one another. This article reviews what constitutes social…

  5. Depressive Symptoms in Older Female Carers of Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Chou, Y. C.; Pu, C-Y.; Fu, L-Y.; Kroger, T.

    2010-01-01

    Background: This survey study aims to examine the prevalence and factors associated with depressive symptoms among primary older female family carers of adults with intellectual disabilities (ID). Method: In total, 350 female family carers aged 55 and older took part and completed the interview in their homes. The survey package contained…

  6. Why carers use adult day respite: a mixed method case study.

    PubMed

    Stirling, Christine M; Dwan, Corinna A; McKenzie, Angela R

    2014-06-06

    We need to improve our understanding of the complex interactions between family carers' emotional relationships with care-recipients and carers use of support services. This study assessed carer's expectations and perceptions of adult day respite services and their commitment to using services. A mixed-method case study approach was used with psychological contract providing a conceptual framework. Data collection was situated within an organisational case study, and the total population of carers from the organisation's day respite service were approached. Fifty respondents provided quantitative and qualitative data through an interview survey. The conceptual framework was expanded to include Maslow's hierarchy of needs during analysis. Carers prioritised benefits for and experiences of care-recipients when making day respite decisions. Respondents had high levels of trust in the service and perceived that the major benefits for care-recipients were around social interaction and meaningful activity with resultant improved well-being. Carers wanted day respite experiences to include all levels of Maslow's hierarchy of needs from the provision of physiological care and safety through to the higher levels of belongingness, love and esteem. The study suggests carers need to trust that care-recipients will have quality experiences at day respite. This study was intended as a preliminary stage for further research and while not generalizable it does highlight key considerations in carers' use of day respite services.

  7. Assessing the Communication Skills of Carers Working with Multiple Learning Disabilities: A Case Study

    ERIC Educational Resources Information Center

    Koski, Katja; Launonen, Kaisa

    2012-01-01

    Background: Speech and language therapists (SLTs) working with adults who have multiple learning disabilities and complex communication needs often deliver their care via indirect therapy where SLTs train carers to communicate with their clients. Yet, very little is known about how SLTs assess the carers' communication skills prior to the training…

  8. Mediators of Well-Being in Ageing Family Carers of Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Minnes, Patricia; Woodford, Lynn; Passey, Jennifer

    2007-01-01

    Background: Increasing numbers of adults with an intellectual disability are being cared for at home by ageing parents. The purpose of this study was to determine whether carer resources (i.e. social support and formal service use) and carer appraisals of ageing and stress/burden mediate the relationships between (1) maladaptive behaviour and…

  9. Recommendations to support informal carers of people living with motor neurone disease.

    PubMed

    Bergin, Susan; Mockford, Carole

    2016-10-02

    Informal carers are increasingly providing specialist care at home for people living with motor neurone disease. The carers may experience significant deterioration in their quality of life as a result of the physical and psychological burden they undertake. This systematic review seeks to provide evidence-based recommendations to enable healthcare professionals to support carers appropriately to maintain their wellbeing and to continue providing care at home. Inclusion criteria included articles focusing on the experience of informal carers of people with motor neurone disease, particularly when reporting on their perspective of professional services. Twenty-three studies were included and a thematic analysis was undertaken. Four key recommendations were identified: providing support, early access to palliative care, information regarding availability of services, and offering carers training for using specialist equipment. These recommendations offer healthcare professionals practical, cost-effective suggestions to improve existing services.

  10. Developing a person-centred approach to carer assessment and support.

    PubMed

    Ewing, Gail; Austin, Lynn; Diffin, Janet; Grande, Gunn

    2015-12-01

    Community nurses play an important role in providing palliative care and support for patients and carers at home. The Carer Support Needs Assessment Tool (CSNAT) provides practitioners with an evidence-based comprehensive tool to use with carers in palliative home care. As a practice tool, the CSNAT uses a person-centred approach-that is, the process of carer assessment and support is facilitated by practitioners but is carerled. In this paper, the CSNAT research team provides an overview of the development of the tool and the benefits for both carers and practitioners arising from using the CSNAT as a person-centred approach in practice. The authors outline the five stages of the CSNAT approach to assist practitioners wishing to implement the CSNAT in practice.

  11. Deliver us from evil: carer burden in Alzheimer's disease.

    PubMed

    Zimmermann, Martina

    2010-12-01

    Alzheimer's disease is the most common neurodegenerative disorder in today's developed world that is also increasingly picked out as a focal theme in fictional literature. In dealing with the subjectivity of human experience, such literature enhances the reader's empathy and is able to teach about moral, emotional and philosophical issues, offering the chance to see situations from a position otherwise possibly never taken by the reader. The understanding and insight so gained may well be unscientific, but the literary approach offers an insight into the whole person's perspective and the particularity and uniqueness of a situation that includes ethical conflicts. A key motif of fictional literature centred around dementia remains the burden the adult-child carer is confronted with, considering the parent's remorseless decline and personality change, the sudden demand for devoted and continuous care, and the constantly changing relationship with the declining parent. In the context of an ever increasing demand for a constructive public discussion regarding end-of-life treatment of demented patients, Christine Devars (Le Piano Désaccordé) and Andrés Barba (Ahora Tocad Música de Baile) illustrate how powerful and burdensome the impact of Alzheimer's disease is on both patient and carer and what extremes may be reached under such truly exceptional circumstances.

  12. Experienced Carers Helping Others (ECHO): protocol for a pilot randomised controlled trial to examine a psycho-educational intervention for adolescents with anorexia nervosa and their carers.

    PubMed

    Rhind, Charlotte; Hibbs, Rebecca; Goddard, Elizabeth; Schmidt, Ulrike; Micali, Nadia; Gowers, Simon; Beecham, Jennifer; Macdonald, Pamela; Todd, Gillian; Tchanturia, Kate; Treasure, Janet

    2014-07-01

    Experienced Carers Helping Others (ECHO) is an intervention for carers of people with eating disorders. This paper describes the theoretical background and protocol of a pilot multicentre randomised controlled trial that will explore the use of two variants of ECHO for improving outcomes for adolescents with anorexia nervosa (AN) referred for outpatient care. Adolescent patients and their carers (typically parents and close others in a supportive role) will be recruited from 38 eating disorder outpatient services across the UK. Carers will be randomly allocated to receive 'ECHOc' guided self-help (in addition to treatment as usual), 'ECHO' self-help only (in addition to treatment as usual) or treatment as usual only. Primary outcomes are a summary measure of the Short Evaluation of Eating Disorders at 6- and 12-month follow-ups. Secondary outcomes are general psychiatric morbidity of AN patients and carer, carers' coping and behaviour, and change in healthcare use and costs at 6- and 12-month follow-ups. Therapist effects will be examined, and process evaluation of ECHOc will be completed. The findings from this pilot trial will be used in preparation for executing a definitive trial to determine the impact of the preferred variant of ECHO to improve treatment outcomes for AN. Copyright © 2014 John Wiley & Sons, Ltd and Eating Disorders Association.

  13. Models of care for socially isolated older rural carers: barriers and implications.

    PubMed

    Winterton, R; Warburton, J

    2011-01-01

    In response to population ageing, the numbers of older carers residing in rural areas are increasing. However, rural older carers are at risk of social isolation due to the decreased social networks associated with ageing and caring responsibilities, and the geographical isolation associated with rurality. This broad, systematic review of the literature was undertaken to: (1) identify barriers to social participation for rural older carers; and (2) summarise features of interventions that were effective in reducing social isolation for rural and/or older carers. Literature was obtained through systematic searches of selected electronic databases; selected Australian and international government and research based websites and Google Scholar. Searches were limited to material published from 1999 to 2009, and literature was included which either identified barriers to social participation, or outlined interventions that were effective in reducing social isolation and increasing social support in rural and/or older carers. 67 articles, book chapters and reports identified which addressed the review objectives. Findings indicate that rural older carers experience considerable barriers to socialisation, and six dimensions are identified that are effective in reducing barriers, decreasing social isolation and increasing social participation. Interventions must address individual needs; incorporate a dual carer-care recipient focus and/or an educational component; facilitate informal social interaction; utilise existing networks and experienced personnel; and be both sustainable and long term. Reducing social isolation in rural older carers is a two-stage process. First, barriers to attendance, both logistical and perceived, must be addressed, and the focus of the intervention must be relevant to the carer. Second, opportunities for informal social interaction must be maximised within the intervention. However, a secondary focus may be necessary to ensure attendance, and

  14. Access to therapy services for people with disability in rural Australia: a carers' perspective.

    PubMed

    Gallego, Gisselle; Dew, Angela; Lincoln, Michelle; Bundy, Anita; Chedid, Rebecca Jean; Bulkeley, Kim; Brentnall, Jennie; Veitch, Craig

    2017-05-01

    In Australia and around the world, people with disability and their carers living in rural areas face additional challenges compared to their urban-dwelling counterparts. This cross-sectional study explored current access to therapy services for people with disability living in western New South Wales as reported by their primary carers. Data were collected using an online and paper survey distributed to carers, from December 2012 until June 2013. Information was sought about the carers, the person they care for, access to physiotherapy, speech pathology, occupational therapy and psychology services. A total of 166 carers participated. Respondents were mostly the carers of a son or daughter (83.6%) , the person they care for had an average age of 17.6 years (range 1-69 years) and more than half were males (56%). The majority of people with disability (73.5%) had received therapy services in the last 2 years. Waiting time and distance travelled to access physiotherapy, speech and occupational therapy services varied. People with disability had to wait an average of 6.6 months to receive speech pathology and had to travel an average of 2.6 hours to receive physiotherapy. The main provider of all services was the specialist disability government department, except for psychology, which is mainly provided in the private sector. From the carers' perspective, availability and accessibility to services are limited. Carers noted that availability of services was more restricted once people with disability reached adulthood. Lack of choice and frustration with the lack of availability of specialist disability services was reported frequently. Carers believed that timely allied health intervention prevented the development of more severe or complicated conditions that had a greater impact on carers, families, communities and the person with disabilities.

  15. The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers

    PubMed Central

    2011-01-01

    Background Diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue. Characterization of cases and the impact of interventions have been limited due to clinical heterogeneity and a lack of reliable biomarkers for diagnosis and outcome measures. People with ME/CFS (PWME) often report high levels of disability, which are difficult to measure objectively. The well being of family members and those who care for PWME are also likely to be affected. This study aimed to investigate the functional status and well being of PWME and their lay carers, and to compare them with people with other chronic conditions. Methods We used a cross sectional design to study 170 people aged between 18 and 64 years with well characterized ME/CFS, and 44 carers, using SF-36 v2™. Mean physical and mental domains scores (scales and component summaries) were calculated and compared internally and externally with reference standards for the general population and for population groups with 10 chronic diseases. Results SF-36 scores in PWME were significantly reduced, especially within the physical domain (mean norm-based Physical Component Summary (PCS) score = 26.8), but also within the mental domain (mean norm-based score for Mental Component Summary (MCS) = 34.1). The lowest and highest scale scores were for "Role-Physical" (mean = 25.4) and "Mental Health" (mean = 36.7) respectively. All scores were in general lower than those for the general population and diseased-specific norms for other diseases. Carers of those with ME/CFS tended to have low scores in relation to population norms, particularly within the mental domain (mean = 45.4). Conclusions ME/CFS is disabling and has a greater impact on functional status and well being than other chronic diseases such as cancer. The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS. We suggest the use of

  16. 'You don't know which bits to believe': qualitative study exploring carers' experiences of seeking information on the internet about childhood eczema.

    PubMed

    Santer, Miriam; Muller, Ingrid; Yardley, Lucy; Burgess, Hana; Ersser, Steven J; Lewis-Jones, Sue; Little, Paul

    2015-04-08

    We sought to explore parents and carers' experiences of searching for information about childhood eczema on the internet. A qualitative interview study was carried out among carers of children aged 5 years or less with a recorded diagnosis of eczema. The main focus of the study was to explore carers' beliefs and understandings around eczema and its treatment. As part of this, we explored experiences of formal and informal information seeking about childhood eczema. Transcripts of interviews were analysed thematically. Participants were recruited from six general practices in South West England. Interviews were carried out with 31 parents from 28 families. Experiences of searching for eczema information on the internet varied widely. A few interviewees were able to navigate through the internet and find the specific information they were looking for (for instance about treatments their child had been prescribed), but more found searching for eczema information online to be a bewildering experience. Some could find no information of relevance to them, whereas others found the volume of different information sources overwhelming. Some said that they were unsure how to evaluate online information or that they were wary of commercial interests behind some information sources. Interviewees said that they would welcome more signposting towards high quality information from their healthcare providers. We found very mixed experiences of seeking eczema information on the internet; but many participants in this study found this to be frustrating and confusing. Healthcare professionals and healthcare systems have a role to play in helping people with long-term health conditions and their carers find reliable online information to support them with self-care. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  17. Exploring the Potential for Family Carers to Support People With Mental Illness to Stop Smoking.

    PubMed

    Lawn, Sharon; Bowman, Jenny; Wye, Paula; Wiggers, John

    2017-01-01

    Cigarette smoking poses significant health burdens for people with mental illness. They die sooner than they should, and smoking is a major contributor to their high rates of morbid chronic physical health conditions and early mortality, compared to the general population. Family carers provide important support to people with mental illness. However, family carers' perspectives of smoking by their family members with mental illness are largely absent from the research literature and from practice, despite smoking rates remaining high and quit rates remaining low for this population. We know little about how family carers are or could be involved in supporting people with mental illness who smoke to stop smoking. This paper aims to provide a discussion of the opportunities for family carers to support their family member's smoking cessation and a discussion of our preliminary research on this topic. From the available literature, it appears that family carers are well placed to support smoking cessation for this population; however, they struggled physically, philosophically, and emotionally with perceived responsibilities involving their family member's smoking and the caring role. They felt isolated and asserted that there was limited support from service providers to assist them. We concluded that family carers are important agents within the person's immediate environment who could help them to improve their smoking cessation success. This suggests also that mental health services and other health service providers could benefit from including family carers in their efforts to support smoking cessation for people with mental illness who smoke.

  18. The practice of palliative care from the perspective of patients and carers

    PubMed Central

    Sampson, Cathy; Finlay, Ilora; Byrne, Anthony; Snow, Veronica; Nelson, Annmarie

    2014-01-01

    Objectives The meaning that patients and carers attribute to their experience of palliative care is fundamental to the provision, practice and evaluation of optimal care. This analysis aims to establish contemporary key practices and priorities from the perspective of patients and carers. Methods Thematic analysis was applied to 594 anonymised free text responses from patients and carers documenting their experiences of palliative care. Results The emotional experience of care is the most significant aspect documented by patients and carers. It refers to the process of care in key domains of respect, renewal, refuge and restorative care. Patients and carers described care as either enabling or directly provided. The emotional experience of care was not confined to psychosocial need and constituted a core practice drawing on professional expertise and interpersonal skills, some of which may be taken for granted by staff themselves. Conclusions The emotional experience of care is examined as a practice rather than a topic, acknowledging that patients and carers documented the performance of care and the resulting impact in a variety of situations. The emotional experience of care comprises key aspects of contextual care facilitating autonomy and connectedness. It is embedded in relationships mediated by communication and tenor of care. The perspective of patients and carers places the emotional experience of palliative care centrally. This has implications for future service evaluation and the incorporation of this skill-based outcome alongside more traditional outcome measures such as the amelioration of physical symptoms. PMID:24644204

  19. In Their Own Words: How Family Carers of People with Dementia Understand Resilience

    PubMed Central

    O’Dwyer, Siobhan T.; Taylor, Tara; Creese, Jennifer

    2017-01-01

    There is a growing body of research on resilience in family carers of people with dementia, but carers’ voices are noticeably absent from it. The aim of this study was to explore carers’ definitions of resilience and their opinions on the factors associated with resilience. Twenty-one in-depth interviews were conducted in Australia with people who were currently, or had previously been, caring for a family member with dementia. Transcripts were analysed thematically and three themes emerged: the presence of resilience, the path to resilience, and characteristics of the resilient carer. Although carers struggled to define resilience, the vast majority considered themselves resilient. Carers identified a range of traits, values, environments, resources, and behaviours associated with resilience, but there was no consensus on the relative importance or causal nature of these factors. Carers also considered resilience to be domain- and context-specific, but did not agree on whether resilience was a trait or a process. These findings highlight both the importance of including carers’ voices in resilience research and the limitations of the extant literature. There is much to be done to develop a field of carer resilience research that is theoretically sound, methodologically rigorous, and reflects the lived experience of carers. A model is provided to prompt future research. PMID:28825686

  20. Inconsistencies in the Roles of Family- and Paid- Carers in Monitoring Health Issues in People with Learning Disabilities: Some Implications for the Integration of Health and Social Care

    ERIC Educational Resources Information Center

    Willis, Diane S.

    2015-01-01

    Changes in the living circumstances of people with learning disabilities have seen responsibility for their health become the provenance of paid-and family-carers. Thirteen semi-structured interviews were conducted with three family-carers and ten paid-carers. Findings revealed that the role of these carers was undefined, leading to difficulty in…

  1. Inconsistencies in the Roles of Family- and Paid- Carers in Monitoring Health Issues in People with Learning Disabilities: Some Implications for the Integration of Health and Social Care

    ERIC Educational Resources Information Center

    Willis, Diane S.

    2015-01-01

    Changes in the living circumstances of people with learning disabilities have seen responsibility for their health become the provenance of paid-and family-carers. Thirteen semi-structured interviews were conducted with three family-carers and ten paid-carers. Findings revealed that the role of these carers was undefined, leading to difficulty in…

  2. Stroke patients' and informal carers' experiences with life after stroke: an overview of qualitative systematic reviews.

    PubMed

    Lou, Stina; Carstensen, Kathrine; Jørgensen, Carina Rumpelthiin; Nielsen, Camilla Palmhøj

    2017-02-01

    Purpose To provide a systematic overview of current qualitative systematic reviews and metasyntheses of patients' and informal carers' experiences with rehabilitation and life after stroke following discharge. Method A systematic literature search was performed based on PRISMA guidelines. Nine databases were systematically searched by a university librarian. The search yielded 1093 unique entries and screening by title/abstract identified 60 reviews for potential inclusion. After full-text assessment by two independent observers, 11 reviews satisfied the inclusion criteria. Following quality appraisal, four studies were excluded. Results Seven qualitative reviews (containing 108 primary studies) were included: five reviews of patients' experiences and two reviews of carers' experiences. Stroke causes profound disruption of life as known, and both patients and carers must engage in a process of adapting and rebuilding a post-stroke life and identity. This process of rehabilitation is described as temperamental and unstable rather than progressive. From the reviews, five key experiences in this process are identified: autonomy, uncertainty, engagement, hope and social relations. Conclusions The need for broad, qualitative syntheses of stroke patients' experiences is currently fulfilled. Future qualitative reviews could focus more on implications for practice, e.g., by grading the quality of the metafindings. Implications for Rehabilitation Stroke is a profound disruption of life as known, and patients and carers value information that helps them prepare for and adjust to this new situation. Optimal rehabilitation is a main concern and goal for patients and carers, and thus carers may be a valuable asset to professionals in the rehabilitation process. Practical and emotional support is important for patients and carers, and rehabilitation professionals should be aware of the increased risk of social isolation post-stroke. Hope is a strong motivational factor and

  3. Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK.

    PubMed

    Livingston, Gill; Leavey, Gerard; Manela, Monica; Livingston, Deborah; Rait, Greta; Sampson, Elizabeth; Bavishi, Shilpa; Shahriyarmolki, Khodayar; Cooper, Claudia

    2010-08-18

    To identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers. Qualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews. Community settings in London. 43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews. Family carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them. They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity. The following strategies helped with implementation of decisions: introducing change slowly; organising legal changes for the carer as well as the patient; involving a professional to persuade the patient to accept services; and emphasising that services optimised, not impeded, independence. To access services, carers made patients' general practice appointments, accompanied them to the surgery, pointed out symptoms, gained permission to receive confidential information, asked for referral to specialist services, and used professionals' authority to gain patients' agreement. End of life decisions were particularly difficult. They were helped by knowledge of the person with dementia's previous views, clear prognostic information, and family support. Information sheets to help carers to overcome barriers to proxy decision making have been developed; their impact in practice has yet to be evaluated.

  4. Caring for children with physical disability in Kenya: potential links between caregiving and carers' physical health

    PubMed Central

    Geere, J L; Gona, J; Omondi, F O; Kifalu, M K; Newton, C R; Hartley, S

    2013-01-01

    Background The health of a carer is a key factor which can affect the well-being of the child with disabilities for whom they care. In low-income countries, many carers of children with disabilities contend with poverty, limited public services and lack assistive devices. In these situations caregiving may require more physical work than in high-income countries and so carry greater risk of physical injury or health problems. There is some evidence that poverty and limited access to health care and equipment may affect the physical health of those who care for children with disabilities. This study seeks to understand this relationship more clearly. Methods A mixed methods study design was used to identify the potential physical health effects of caring for a child with moderate-severe motor impairments in Kilifi, Kenya. Qualitative data from in-depth interviews were thematically analysed and triangulated with data collected during structured physiotherapy assessment. Results Carers commonly reported chronic spinal pain of moderate to severe intensity, which affected essential activities. However, carers differed in how they perceived their physical health to be affected by caregiving, also reporting positive benefits or denying detrimental effects. Carers focussed on support in two key areas; the provision of simple equipment and support for their children to physically access and attend school. Conclusions Carers of children with moderate-severe motor impairments live with their own physical health challenges. While routine assessments lead to diagnosis of simple musculoskeletal pain syndromes, the overall health status and situation of carers may be more complex. As a consequence, the role of rehabilitation therapists may need to be expanded to effectively evaluate and support carers' health needs. The provision of equipment to improve their child's mobility, respite care or transport to enable school attendance is likely to be helpful to carers and children

  5. Cultural competency: professional action and South Asian carers.

    PubMed

    Mir, Ghazala; Tovey, Philip

    2002-01-01

    Inequality and exclusion are characteristic of the experience of UK South Asian communities. In health care, community needs are often not addressed by health and social welfare services. An increase in cultural competency is now part of identified policy. The aim of this paper is to examine the extent to which there is evidence of cultural competency amongst professionals concerning South Asian parents caring for a person with cerebral palsy. Semi-structured interviews were conducted with respondents from 19 service organisations. Results are presented on perceptions of service delivery and on the dynamics of service development: evidence is found that inadequate service delivery continues despite professional knowledge that it exists. Conditions necessary for the achievement of cultural competence are discussed. We suggest that service development to meet the needs of South Asian carers must form part of an overall strategy geared to change at different levels within and outside service organisations.

  6. Public expenditure costs of carers leaving employment in England, 2015/2016.

    PubMed

    Pickard, Linda; King, Derek; Brimblecombe, Nicola; Knapp, Martin

    2017-09-14

    In the context of global population ageing, the reconciliation of employment and unpaid caring is becoming an important social issue. The estimation of the public expenditure costs of carers leaving employment is a valuable measure that is of considerable interest to policy makers. In 2012, the Personal Social Services Research Unit estimated that the public expenditure costs of unpaid carers leaving employment in England were approximately £1.3 billion a year, based on the costs of Carer's Allowance and lost tax revenues on forgone incomes. However, this figure was known to be an underestimate partly because it did not include other key benefits that carers who have given up work to care may receive. This paper presents a new estimate of the public expenditure costs of carers leaving employment. Key sources of information are the 2009/2010 Survey of Carers in Households, 2011 Census and 2015/2016 costs data. As well as Carer's Allowance, the estimate also now includes the costs of other benefits that carers leaving work may receive, namely, Income Support and Housing Benefit. The results show that the estimated numbers of carers who have left employment because of caring have increased from approximately 315,000 to 345,000. Due mainly to the inclusion of a wider range of benefits, the public expenditure costs of carers leaving employment in England are now estimated at £2.9 billion a year. The new estimate comprises £1.7 billion in social security benefits paid to people who have left their jobs because of unpaid caring, plus another £1.2 billion in taxes forgone on this group's lost earnings. The paper concludes that, if there was greater public investment in social care, such as "replacement care" to support carers in employment, and fewer carers then left employment, public spending on benefits would be lower and revenues from taxation would be higher. © 2017 John Wiley & Sons Ltd.

  7. Involving service users in the development of the Support at Home: Interventions to Enhance Life in Dementia Carer Supporter Programme for family carers of people with dementia.

    PubMed

    Burnell, Karen J; Selwood, Amber; Sullivan, Theresa; Charlesworth, Georgina M; Poland, Fiona; Orrell, Martin

    2015-02-01

    Involving service users in research can be an effective way of improving the practicalities and acceptability of interventions for target end users. The current paper presented two consensus methods, not commonly used in consultation with service users, to develop a peer support intervention for family carers of people with dementia (SHIELD Carer Supporter Programme). Study 1 was a modified Delphi process combined with a consensus conference to explore details of the intervention from the carer and volunteer perspective. Study 2 was an anonymous reader consultation to develop informed consent documents for the intervention trial. Median scores were used to measure and establish consensus. Open-ended responses were thematically analysed. Study 1: twenty-five delegates participated (eight were current/former carers) in the first round Delphi questionnaire, with 21 attending the conference. Five completed the Round 2 questionnaire. Study 2: six family carers and 11 people with dementia took part in the consultation. Study 1: the role of the peer supporters was developed in terms of relational and practical aspects of the intervention. Study 2: changes were made to the documents, reflecting service user input, but the effectiveness of this less discursive type of service user involvement was unclear. Study 1 methods allowed for service users to contribute significantly and meaningfully, but maybe limiting some design innovation. Study 2 took a more traditional and less collaborative approach. This has implications for balancing the needs of the research with meaningful service user involvement in research. © 2012 John Wiley & Sons Ltd.

  8. Saying it in song: music therapy as a carer support intervention.

    PubMed

    O'Kelly, Julian

    2008-06-01

    The burdens experienced by informal caregivers are likely to increase in the context of the UK's ageing demographic, and the movement towards more home-based care for those with long-term, chronic or palliative illnesses. This article combines an overview of our understanding of caregiving and carer support interventions, with an outline of the evidence base for music therapy in palliative care. Case material from the author's experiences of songwriting with a carer is used to provide a practical insight into how this emerging palliative care discipline may have the potential to alleviate carer burden, and enhance wellness. More research to explore the efficacy of music therapy as a carer support intervention is recommended.

  9. The burden of care of gay male carers caring for men living with HIV/AIDS.

    PubMed

    Munro, Ian; Edward, Karen-Leigh

    2010-12-01

    The notion of caregiver 'burden' has been used as a term that refers to the financial, physical and emotional effects of caring. This Australian 2002 research investigated the caregiver burden of HIV/AIDS on the gay male carers of gay men with the disease. This study was a phenomenological inquiry and employed van Manen's approach to content analysis. Data saturation occurred at twelve participants. The findings produced carer themes relating to coping with the burden of care of a person living with HIV/AIDS (PLWHA) in the context of living day-to-day with HIV/AIDS, coping with the last phase of AIDS toward death, saying goodbye and remembrance. Allocating resources to gay male carers such as; education, respite care, family therapy and cognitive-behavioral therapy (CBT) to address grief and stigma issues, has implications for how health services might reduce the burden of care for these carers.

  10. Exploring children's perspectives of engagement with their carers using factor analysis.

    PubMed

    Withington, Tania; Duplock, Ray; Burton, Judith; Eivers, Areana; Lonne, Bob

    2017-01-01

    Positive engagement between a child and carer in out-of-home care is understood to have long-term benefits for children who have experienced abuse or neglect. This study analysed data from the 'Views of Children and Young People in Foster Care 2009' survey of 937 children in out-of-home care in Queensland, Australia, to identify factors that supported or hindered engagement between a child and carer. Exploratory and confirmatory factor analysis and structural regression were used. Findings suggest that children's engagement with their carer is influenced by a range of internal and external factors including child characteristics, the care experience, contact with biological parents, and placement trajectory. Child engagement is important because it is central to positive outcomes such as placement stability in out-of-home care. Implications for policy and practice include the need for a structural response that supports building and maintaining positive child-carer relationships.

  11. End-of-life training for paid carers working with people with learning disabilities.

    PubMed

    Codling, Mary; Knowles, Jane; Vevers, Ann

    2014-04-01

    People with learning disabilities are living longer lives. Over the past few years, research has explored the needs of people with learning disabilities, their families and learning disability professionals in relation to end-of-life care and death. However, little is known about the needs of paid carers and their experience of end-of-life care. This article discusses the development, implementation and evaluation of a study day about end-of-life care that was delivered to paid carers on two separate occasions in Berkshire Healthcare NHS Foundation Trust. A total of 43 paid carers attended and the days were well evaluated. The need for further training for paid carers who work with people with learning disabilities at the end of life was highlighted.

  12. The role of telematics in assisting family carers and frail older people at home.

    PubMed

    Hanson, Elizabeth J.; Clarke, Amanda

    2000-03-01

    The overall aim of the ACTION research project (Assisting Carers using Telematic Interventions to meet Older person's Needs) is to maintain or enhance the autonomy, independence and quality of life of frail older and disabled people and their family carers by providing information, advice and support in the home. The authors report on the first phase of evaluation conducted using a case-study approach to test the ACTION system in several family carers' homes in Sheffield, England. The results reflect the realities of conducting an applied research technology project and are discussed with reference to the government's recent national strategy for carers. The authors acknowledge the need for further evaluation studies to explore the key issues raised within this preliminary evaluation phase.

  13. Consumers with an intellectual disability and carers: perceptions of interactions with banks.

    PubMed

    Hayes, Susan C; Martin, Fiona B

    2007-03-01

    As more people with an intellectual disability reside independently in the community, there is both the need and the opportunity for them to use financial services, including banks and credit unions, and products such as cash machine cards, credit cards and loans. There is a dearth of information about interactions between consumers with intellectual disabilities and their carers, and financial service providers. This study investigated the perceptions of 94 consumers with an intellectual disability and 53 carers regarding interactions with financial service providers. Consumers and carers mentioned a number of problems with banks, and reported a low rate of successful resolution of these difficulties. Carers mentioned more problems than consumers, and more frequently reported intangible problems such as discrimination. The 'digital divide' was evident, with few consumers having access to Internet or telephone banking. People with intellectual disabilities need education programmes about electronic banking, their rights as consumers and their access to problem resolution strategies.

  14. Volunteer peer support and befriending for carers of people living with dementia: An exploration of volunteers' experiences.

    PubMed

    Smith, Raymond; Drennan, Vari; Mackenzie, Ann; Greenwood, Nan

    2017-07-24

    With ageing populations and greater reliance on the voluntary sector, the number of volunteer-led peer support and befriending services for carers of people with dementia in England is set to increase. However, little is known about the experiences of the volunteers who deliver these interventions, many of whom are former carers. Using in-depth semi-structured interviews with 10 volunteer peer supporters and befrienders, this exploratory study investigated volunteers' experiences of delivering the support, the types of relationships they form with carers and their perceptions of its impact upon them and on carers. Data were analysed using framework analysis. Findings showed that volunteers benefitted from their role due to the 'two-way' flow of support. Experiential similarity and having common interests with carers were considered important to the development of mutually beneficial relationships. Volunteers perceived that carers gained emotional and social support, which in turn improved the carers' coping ability. Being able to see positive changes to carers' lives was important for volunteers to gain enjoyment and satisfaction from their role. However, volunteers also identified challenges with their role, such as dealing with carers' emotions. Future research should investigate ways of reducing potential burden on volunteers and explore the impact of volunteering specifically on former carers of people with dementia. © 2017 John Wiley & Sons Ltd.

  15. Love stories: understanding the caring journeys of aged Greek-Australian carers.

    PubMed

    Horsfall, Debbie; Blignault, Ilse; Perry, Astrid; Antonopoulos, Penny

    2016-03-01

    This article documents the findings of a short-term longitudinal study that explored the caring journeys of aged Greek carers providing in-home care for their spouse. Through a deeper understanding of carers' decisions and decision-making and insights from service providers and community leaders, we aimed to inform policy makers, service managers and providers about how to develop and promote culturally appropriate support services, and negotiate them with carers and care recipients in a timely way. Initially, we conducted three focus groups and one follow-up forum with service providers and Greek community leaders. Then, over a 6-month period, we conducted two in-home interviews and two telephone interviews with 12 older Greek carers. We sought to understand factors influencing carers' decision-making regarding service uptake, and we provided information about services as required. Through our thematic analysis, we found that most carers wanted to remain as independent as possible and to avoid forced separation from the one they loved, through institutionalisation. They placed great value on their caring role which, while a struggle at times, gave them a sense of meaning, purpose and belonging. We also found that carers had great resourcefulness, strength and competence. They were all in long-term relationships, had negotiated coming to a foreign country and establishing themselves and were now in the process of negotiating old age and increasing frailty while at the same time providing care and support to family and friends. Our findings suggest that services need to be communicated in ways which support what carers value, not on outdated assumptions about cultural groups, otherwise providers will perpetuate exclusion. We propose an outreach in-home service model with an emphasis on ageing well and staying at home. This model of service provision is a model of care which emphasises relationships and community, and seeks to build social and cultural capital.

  16. Group cognitive behavioural therapy for stroke survivors with depression and their carers.

    PubMed

    K Ward, Susan; Turner, Alyna; A Hambridge, John; A Halpin, Sean; E Valentine, Megan; L Sweetapple, Anne; H White, Jennifer; Hackett, Maree L

    2016-10-01

    Depression in stroke survivors is common, leads to poorer outcomes and often not treated. A group cognitive behavioural therapy (CBT) program (Brainstorm) for stroke survivors with depression, and their carers has been running as part of usual care since 2007. To evaluate the implementation and acceptability of Brainstorm, a closed group intervention consisting of up to 10 sessions of education, activity planning, problem solving and thought challenging. Participating stroke survivors and their carers complete assessment measures at baseline, post-treatment and 1-month and 6-months follow-up. A mixed models for repeated measures data was conducted with depression and anxiety scores for stroke survivors (Beck Depression Inventory-II; Hospital Anxiety and Depression Scale) and the assessment of depression, anxiety and carer burden for carers. Acceptability was assessed by session attendance and written and open participant feedback upon completion of the program. Forty-eight community dwelling stroke survivors and 34 carers attended Brainstorm, with a median attendance of 88% of sessions. Follow-up assessments were completed by 77% (post-treatment), 46% (1-month) and 38% (6-month) of stroke survivors. Stroke survivors' depression scores decreased from baseline to post-treatment (p<.001); maintained at 1-month (p<.001) but not at 6-month (p=.056). Anxiety scores decreased between baseline and 1-month (p=.013). Carer burden, depression and anxiety scores at 1-month and 6-month follow-up, for carers, were all reduced when compared with baseline (p<.05). The Brainstorm group intervention for depression in stroke survivors appears to have been effectively implemented and is acceptable to stroke survivors and carers.

  17. Family carers providing support to a person dying in the home setting: A narrative literature review

    PubMed Central

    Morris, Sara M; King, Claire; Turner, Mary

    2015-01-01

    Background: This study is based on people dying at home relying on the care of unpaid family carers. There is growing recognition of the central role that family carers play and the burdens that they bear, but knowledge gaps remain around how to best support them. Aim: The aim of this study is to review the literature relating to the perspectives of family carers providing support to a person dying at home. Design: A narrative literature review was chosen to provide an overview and synthesis of findings. The following search terms were used: caregiver, carer, ‘terminal care’, ‘supportive care’, ‘end of life care’, ‘palliative care’, ‘domiciliary care’ AND home AND death OR dying. Data sources: During April–May 2013, Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycINFO, Pubmed, Cochrane Reviews and Citation Indexes were searched. Inclusion criteria were as follows: English language, empirical studies and literature reviews, adult carers, perspectives of family carers, articles focusing on family carers providing end-of-life care in the home and those published between 2000 and 2013. Results: A total of 28 studies were included. The overarching themes were family carers’ views on the impact of the home as a setting for end-of-life care, support that made a home death possible, family carer’s views on deficits and gaps in support and transformations to the social and emotional space of the home. Conclusion: Many studies focus on the support needs of people caring for a dying family member at home, but few studies have considered how the home space is affected. Given the increasing tendency for home deaths, greater understanding of the interplay of factors affecting family carers may help improve community services. PMID:25634635

  18. How do family carers respond to behavioral and psychological symptoms of dementia?

    PubMed

    Moore, Kirsten; Ozanne, Elizabeth; Ames, David; Dow, Briony

    2013-05-01

    Behavioral and psychological symptoms of dementia (BPSD) have been associated with increased carer burden and early institutionalization. BPSD are more responsive to treatment than are cognitive and functional decline. Little is known about how family carers understand and try to reduce these symptoms. This study aimed to explore the strategies used by carers looking after someone with high levels of BPSD. Twenty-five carers were interviewed using a semi-structured interview with the Neuropsychiatric Inventory (NPI). They were all caring for someone eligible for an Extended Aged Care at Home Dementia Package, which targets people with BPSD. Participants reported high levels of BPSD with a mean score of 8.2 for symptoms (range 2-12, SD = 2.38) and a mean NPI score of 51.4 (range 14-111, SD = 28.74). Distress scores were also high with a mean of 18.5 (range 2-42, SD = 11.33). Carers described on average, fewer than four strategies for managing BPSD. Encouraging activity, utilizing psychotropic medications, identifying triggers, restraining or treating in a paternalistic manner, and meeting physiological needs were the most commonly used strategies. While family carers are often at the forefront of identifying triggers and addressing unmet needs, findings from this study suggest that some carers have a limited repertoire of strategies despite experiencing a large number of symptoms. There is a clear need for ensuring evidence-based programs to educate and support carers in identifying triggers, understanding symptoms and learning to cope with these symptoms.

  19. Do they look after their own? Informal support for South Asian carers.

    PubMed

    Katbamna, Savita; Ahmad, Waqar; Bhakta, Padma; Baker, Richard; Parker, Gillian

    2004-09-01

    Policy on care in the community was founded on the premise that the care of frail elderly people with disabilities would be a joint responsibility for health and social care professionals, and family carers, supported by people within their social networks. The policy assumes that such social networks are common features of all communities in contemporary Britain, containing a reserve of people who can be called upon to provide support to carers. The present paper draws on material gathered for a qualitative study of the experiences carers in South Asian communities to examine the quality and quantity of informal support that was available in different types of households. Male and female carers were selected from the Punjabi Sikh, Gujarati Hindu, and Bangladeshi and Pakistani communities. A total of 105 carers participated in the project. Participants were caring for people in all age groups with physical and/or mental distress, and in some cases, with multiple and complex impairments. The analysis of carers' accounts suggested that, for a variety of reasons, the main carer, irrespective of gender, had limited support both in nuclear and extended households. In addition, societal attitudes towards disability and the fear of obligation prevented the seeking and accepting of help from wider social networks. The paper concludes that the evidence does not support the assumption about extended families, and their willingness and ability to support carers. Many issues highlighted in this paper have far-reaching implications for policy makers in many countries in the West where South Asian people have made their homes.

  20. Supporting activity engagement by family carers at home: maintenance of agency and personhood in dementia

    PubMed Central

    Chung, Pat Yin Fan; Ellis-Hill, Caroline; Coleman, Peter

    2017-01-01

    ABSTRACT An explorative paper to describe how family carers, through the caregiving journey, reaffirm and promote the agency of people with dementia. Agency is an important concept in dementia care and is crucial to the promotion of wellbeing and the delivery of person-centred care. This article is based on one of the key findings of a study that explored family carers’ experiences of engaging their relatives in daily activities in domestic settings. Following research governance and ethical approval, 30 in-depth interviews (initial and follow-up) were carried out with 15 resident-carers of people with dementia who were recruited via local community mental health teams. Then five focus groups were conducted with 21 participants accessed through carers support groups. Interviews and focus groups were transcribed, coded and analysed using a grounded theory method. Findings showed the process in which family carers encouraged and sustained a sense of autonomy and control (agency) in their relative’s daily activities. Key strategies used by carers included: being non-judgemental; facilitating a sense of worth; taking calculated risks; maintaining the continuity of their relative’s identity; enhancing a sense of connection with their relative’s role and identity using enjoyable activities; preventing inactivity and attending to the bodily source of the agency. Lack of support for carers could ultimately pose a risk to the maintenance of the agency of people with dementia. This study provides a deeper insight into the process used by home carers to support the agency of people with dementia. This is essential if practitioners are to identify and develop more realistic intervention strategies and to work in effective partnership with family carers. The implications for the creation of dementia-friendly communities are discussed. PMID:28452609

  1. General practice based psychosocial interventions for supporting carers of people with dementia or stroke: a systematic review.

    PubMed

    Greenwood, Nan; Pelone, Ferruccio; Hassenkamp, Anne-Marie

    2016-01-15

    Particularly with ageing populations, dementia and stroke and their resultant disability are worldwide concerns. Much of the support for people with these conditions comes from unpaid carers or caregivers. The carers' role is often challenging and carers themselves may need support. General practice is often the first point of contact for people with these conditions and their carers, making it potentially an important source of support. This systematic review therefore synthesised the available evidence for the impact of supportive interventions for carers provided in general practice. PRISMA guidelines were adopted and the following databases were searched: MEDLINE; EMBASE; the Cochrane Library; PsycINFO; CINAHL Plus; Applied Social Sciences Index and Abstracts and Healthcare Management Information Consortium. Two thousand four hundred eighty nine results were identified. Four studies, involving 447 carers, fitted the inclusion criteria. Three of these came from the United States of America. None investigated supportive interventions for carers of people with stroke. Primarily by the provision of information and educational materials, the interventions focussed on improving carer mental health, dementia knowledge, caregiving competence and reducing burden, difficulties and frustrations. Overall the evidence suggests that these interventions may improve carer well-being and emotional health but the impact on physical health and social variables was less clear. However, the diversity of the carer outcomes and the measures used means that the findings must be viewed with caution. Unpaid carers pay an essential role in caring for people with stroke and dementia and the dearth of literature investigating the impact of supportive interventions for these carers of is surprising. The available evidence suggests that it may be possible to offer support for these carers in general practice but future research should consider focussing on the same outcome measures in order

  2. A systematic review of the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their carers.

    PubMed

    Mason, A; Weatherly, H; Spilsbury, K; Arksey, H; Golder, S; Adamson, J; Drummond, M; Glendinning, C

    2007-04-01

    To review the evidence for different models of community-based respite care for frail older people and their carers, where the participant group included older people with frailty, disability, cancer or dementia. Where data permitted, subgroups of carers and care recipients, for whom respite care is particularly effective or cost-effective, were to be identified. Major databases were searched from 1980 to March 2005. Ongoing and recently completed research databases were searched in July 2005. Data from relevant studies were extracted and quality assessed. The possible effects of study quality on the effectiveness data and review findings were discussed. Where sufficient clinically and statistically similar data were available, data were pooled using appropriate statistical techniques. Twenty-two primary studies were included. Most of the evidence came from North America, with a minority of effectiveness and economic studies based in the UK. Types of service studied included day care, host family, in-home, institutional and video respite. Effectiveness evidence suggests that the consequences of respite upon carers and care recipients are generally small, with better controlled studies finding modest benefits only for certain subgroups. However, many studies report high levels of carer satisfaction. No reliable evidence was found that respite can delay entry to residential care or that respite adversely affects care recipients. Randomisation validity in the included randomised studies was sometimes unclear. Studies reported many different outcome measures, and all of the quasi-experimental and uncontrolled studies had methodological weaknesses. The descriptions of the studies did not provide sufficient detail of the methods of data collection or analysis, and the studies failed to describe adequately the groups of study participants. In some studies, only evidence to support respite care services was presented, rather than a balanced view of the services. Only five

  3. Behavioural and psychological symptoms in dementia and the challenges for family carers: systematic review

    PubMed Central

    Feast, Alexandra; Orrell, Martin; Charlesworth, Georgina; Melunsky, Nina; Poland, Fiona; Moniz-Cook, Esme

    2016-01-01

    Background Tailored psychosocial interventions can help families to manage behavioural and psychological symptoms in dementia (BPSD), but carer responses to their relative's behaviours contribute to the success of support programmes. Aims To understand why some family carers have difficulty in dealing with BPSD, in order to improve the quality of personalised care that is offered. Method A systematic review and meta-ethnographic synthesis was conducted of high-quality quantitative and qualitative studies between 1980 and 2012. Results We identified 25 high-quality studies and two main reasons for behaviours being reported as challenging by family carers: changes in communication and relationships, resulting in ‘feeling bereft’; and perceptions of transgressions against social norms associated with ‘misunderstandings about behaviour’ in the relative with dementia. The underlying belief that their relative had lost, or would inevitably lose, their identity to dementia was a fundamental reason why family carers experienced behaviour as challenging. Conclusions Family carers' perceptions of BPSD as challenging are associated with a sense of a declining relationship, transgressions against social norms and underlying beliefs that people with dementia inevitably lose their ‘personhood’. Interventions for the management of challenging behaviour in family settings should acknowledge unmet psychological need in family carers. PMID:26989095

  4. A systematic review of the economic evidence for interventions for family carers of stroke patients.

    PubMed

    Heslin, Margaret; Forster, Anne; Healey, Andy; Patel, Anita

    2016-02-01

    To examine the economic evidence for interventions aimed at family carers of stroke patients. Searches (limited to those published in English since 1990) were performed in key databases along with hand searches of relevant papers. Papers were restricted to studies including any economic data (broadly defined) for any intervention targeting carers explicitly or explicitly referring to a carer element, beyond involving carers in the care or intervention for patients (i.e. more than just carers being invited to observe an intervention targeted at the patient). Two reviewers independently screened full papers and extracted data using guidance from the National Institute for Health and Care Excellence, and quality assessment using the Newcastle-Ottawa Quality Assessment Scale (cohort studies), the Delphi list (randomised controlled trials) and guidelines on economic quality from the British Medical Journal. Data were reviewed descriptively as meta analyses were inappropriate due to non-comparability of studies. Ten papers were included in the review. These were heterogeneous in their design, intervention and economic analyses making comparison difficult. Only three of the ten papers included economic evaluations. All three reported that the intervention was less costly and had better or equivalent outcomes than the control comparator although two of these were based on the same intervention using the same dataset. There is some limited evidence that interventions for family carers of stroke patients are effective and cost effective. However, due to variation in the types of interventions examined, little can be concluded regarding implications for clinical practice. © The Author(s) 2015.

  5. When one loses empathy: its effect on carers of patients with dementia.

    PubMed

    Hsieh, Sharpley; Irish, Muireann; Daveson, Naomi; Hodges, John R; Piguet, Olivier

    2013-09-01

    The effects of empathy loss in frontotemporal dementia (FTD) and Alzheimer disease (AD) on carer symptomatology were investigated. Carers of patients with 2 clinical subtypes of FTD (behavioral-variant FTD [bvFTD] = 18; semantic dementia [SD] = 14) and AD (n = 18) completed the Interpersonal Reactivity Index (IRI), a standardized questionnaire of empathy as well as a measure of perceived burden (Zarit Burden Interview) and the quality of the marital relationship (Intimate Bond Measure). Patient ratings were also obtained on the IRI. Loss of empathy was most striking in the bvFTD group with a marked discrepancy observed between carer and patient ratings for change in emotional warmth and the ability to take the perspective of others. Empathy loss in bvFTD was associated with a loss of a caring marital relationship. Empathic deficits in SD were milder by comparison to bvFTD and correlated with disease severity and increased perceived carer burden. The behavioral pattern observed in AD differed from the FTD syndromes; deficits were observed only for measures of personal distress with carers reporting that patients were less able to handle emotionally evocative situations. Results highlight that changes in aspects of empathy differ across dementia syndromes and are associated with differing carer and clinical variables. These findings might be explained by the progression of atrophy in regions that are known to be critical for empathy and social behavior and has implications for the delivery and planning of services in dementia.

  6. 'Deferred or chickened out?' Decision making among male carers of people with dementia.

    PubMed

    Sampson, Michelle S; Clark, Andrew

    2016-11-01

    In this paper, we present new insight into the ways in which carers of people with dementia make decisions in the context of seemingly declining autonomy and freedom associated with the condition. Our focus is on the ways in which carers reflect on decisions made in different temporal contexts (day-to-day, medium- and long term). Drawing on data and analysis from in-depth interviews with male informal carers of women with mild to moderate dementia living in the northwest of England, we outline how the decision-making process is dependent on the temporality of the decisions. Arguably unsurprisingly, we found that short-term or 'day-to-day' decisions were made with input from those cared for, while longer term decisions were deferred until a point when necessity meant carers had to make decisions themselves. However, and importantly, carers were aware of the implications of how they were making decision, including the potential impact in terms of partial withdrawal, or even full denial, of autonomy of those they care for. Consequently, we argue that carers adopt a form of practised autonomy to negotiate the complexity of everyday decision making while managing longer term uncertainty and anxiety. © The Author(s) 2015.

  7. Physical health and mental illness: listening to the voice of carers.

    PubMed

    Happell, Brenda; Wilson, Karen; Platania-Phung, Chris; Stanton, Robert

    2017-04-01

    Shortened life expectancy of people with mental illness is now widely known and the focus of research and policy activity. To date, research has primarily reflected perspectives of health professionals with limited attention to the views and opinions of those most closely affected. The voice of carers is particularly minimal, despite policy stipulating carer participation is required for mental health services. To present views and opinions of carers regarding physical health of the people they care for. Qualitative exploratory. Two focus groups and one individual interview were conducted with 13 people identifying as carers of a person with mental illness. Research was conducted in the Australian Capital Territory. Data analysis was based on the thematic framework of Braun and Clarke. Two main themes were interaction between physical and mental health; and, carers' own physical and mental health. Participants described the impact of mental illness and its treatments on physical health, including their own. Carers are acknowledged as crucial for the delivery of high quality mental health services. Therefore they have an important role to play in addressing the poor physical health of people with mental illness. Hearing their views and opinions is essential.

  8. Children, adolescents and their carers' expectations of child and adolescent mental health services (CAMHS).

    PubMed

    Ronzoni, Pablo; Dogra, Nisha

    2012-05-01

    The use of service users' views as performance indicators highlights the trend to make services more responsive to patients' needs. However, recent research indicates that there is a lack of clear understanding about specialist CAMHS and the outcomes that children, adolescents and their parents hope to achieve from treatment differ. To explore children/young people's and parents/carers' expectations of CAMHS in Leicestershire, England. Sixty children/young people and their parents/carers were asked to identify goals they want to achieve following contact with CAMHS. Qualitative thematic analysis in relation to Hoagwood's SFCES model (Symptoms, Functional, Consumer perspectives, Environment and Systems) was used. The question was answered by 46.7% of children and young people and 60% of carers. Overall, children, young people and parents/carers agreed that symptomatic modification and functional aspects were the most important goals. However, internalising items seemed more important for parents/carers than children and adolescents, who in contrast hoped for improvement in externalising factors. Goals outside the scope of CAMHS were also noted for both groups. Attention to children/young people and their parents/carers' expectations of services is needed to improve therapeutic relationships and engagement. Improvement in mental health literacy and practitioners' guidance is required to allow service users to set realistic and achievable treatment goals.

  9. Depression and other psychiatric morbidity in carers of elderly people living at home.

    PubMed Central

    Livingston, G.; Manela, M.; Katona, C.

    1996-01-01

    OBJECTIVE--To describe the mental health of a community sample of carers of elderly people with dementia, depression, or physical disability and to compare that with the mental health of other adults living in the household and of those living alone. DESIGN--Assessment of psychiatric morbidity and physical disability with standardised questionnaire in randomly selected enumeration districts; subjects were interviewed at home. SETTING--London Borough of Islington. SUBJECTS--700 people aged > or = 65 and other coresidents. MAIN OUTCOME MEASURE--Depression measured with standardised interview. RESULTS--The prevalence of depression was not significantly higher in carers overall (15%) than in coresidents (11%). Being a woman carer was a significant predictor of psychiatric illness. Depression was more common in the carers of people with a psychiatric disorder than in coresidents (24% v 11%, P < 0.05) and in those living alone (19%). Depression was most common (47%) in women carers of people with dementia. CONCLUSION--The increase in psychiatric morbidity reported in carers of people with psychiatric disorders may reflect the lack of a confiding relationship. PMID:8563534

  10. VLSI reliability

    SciTech Connect

    Sabnis, A.G. )

    1990-01-01

    This book presents major topics in IC reliability from basic concepts to packaging issues. Other topics covered include failure analysis techniques, radiation effects, and reliability assurance and qualification. This book offers insight into the practical aspects of VLSI reliability.

  11. 'We have different routes for different reasons': Exploring the purpose of walks for carers of people with dementia.

    PubMed

    Silverman, Marjorie

    2017-01-01

    This paper explores the purpose of walks for co-residing carers of people with dementia, using a social citizenship lens. The findings are based on the first phase of a study examining the everyday experiences of place, space, and neighbourhood of dementia carers. Using three forms of data collection - social network mapping, walking interviews, and participant-driven photography - the study brings forth information about why carers go on walks either alone or with the person with dementia. Carers explained that walks facilitate their connections with themselves, the person with dementia, their social environment, and their natural and built environment. In sum, walks provide a way of practicing and sustaining social citizenship. Carers' discourse about walks highlights their personal, everyday practices and strategies, as well as the larger tensions and contradictions of dementia care. The findings reinforce the need to bring into dialogue, from a carer perspective, a social citizenship model of dementia with the growing interest in dementia-friendly communities.

  12. Producing computer-generated tailored written information for stroke patients and their carers: system development and preliminary evaluation.

    PubMed

    Hoffmann, Tammy; Russell, Trevor; McKenna, Kryss

    2004-11-01

    The aim of this project was to design and evaluate a system that would produce tailored information for stroke patients and their carers, customised according to their informational needs, and facilitate communication between the patient and health professional. A human factors development approach was used to develop a computer system, which dynamically compiles stroke education booklets for patients and carers. Patients and carers are able to select the topics about which they wish to receive information, the amount of information they want, and the font size of the printed booklet. The system is designed so that the health professional interacts with it, thereby providing opportunities for communication between the health professional and patient/carer at a number of points in time. Preliminary evaluation of the system by health professionals, patients and carers was positive. A randomised controlled trial that examines the effect of the system on patient and carer outcomes is underway.

  13. Improving caregiving competence, stress coping, and mental well-being in informal dementia carers

    PubMed Central

    Chiu, Mary; Wesson, Virginia; Sadavoy, Joel

    2013-01-01

    AIM: To study the effectiveness of Reitman Centre “Coaching, Advocacy, Respite, Education, Relationship, and Simulation” (CARERS) program, which uses problem-solving techniques and simulation to train informal dementia carers. METHODS: Seventy-three carers for family members with dementia were included in the pilot study. Pre- and post-intervention data were collected from carers using validated measures of depression, mastery, role captivity and overload, caregiving competence and burden, and coping styles. To assess program effectiveness, mean differences for these measures were calculated. One-way ANOVA was used to determine if change in scores is dependent on the respective baseline scores. Clinical effects for measures were expressed as Cohen’s D values. RESULTS: Data from 73 carers were analyzed. The majority of these participants were female (79.5%). A total of 69.9% were spouses and 30.1% were children of the care recipient. Participants had an overall mean age of 68.34 ± 12.01 years. About 31.5% of participating carers had a past history of psychiatric illness (e.g., depression), and 34.2% sustained strained relationships with their respective care recipients. Results from carers demonstrated improvement in carers’ self-perception of competence (1.26 ± 1.92, P < 0.0001), and significant reduction in emotion-focused coping (measured by the Coping Inventory of Stressful Situations, -2.37 ± 6.73, P < 0.01), Geriatric Depression scale (-0.67 ± 2.63, P < 0.05) and Pearlin’s overload scale (-0.55 ± 2.07, P < 0.05), upon completion of the Program. Secondly, it was found that carers with more compromised baseline scores benefited most from the intervention, as they experienced statistically significant improvement in the following constructs: competence, stress-coping style (less emotion-oriented), sense of mastery, burden, overload. CONCLUSION: Study results supported the effectiveness of the CARERS Program in improving caregiving competence

  14. Predicting anxiety and depression among family carers of people with Chronic Obstructive Pulmonary Disease.

    PubMed

    Jácome, Cristina; Figueiredo, Daniela; Gabriel, Raquel; Cruz, Joana; Marques, Alda

    2014-07-01

    Chronic Obstructive Pulmonary Disease (COPD) can be highly incapacitating, imposing a significant burden on family members, however, limited research has been conducted on psychological health of family carers. Thus, this study examined anxiety and depression symptoms in family carers of people with COPD and their predictors. A cross-sectional study was conducted with family carers and respective patients with COPD. The caregiving situation and the perceived burden, through the Carers' Assessment of Difficulties Index, were collected from family carers. Patients' COPD severity and activities limitation were assessed. The Hospital Anxiety and Depression Scale (HADS) was used to assess anxiety and depression symptoms in family carers and patients. Scores ≥8 were considered clinically significant. A total of 203 family carers (58.2 ± 14.8 years old; 75.4% female) and respective patients with COPD (69.2 ± 11.5 years old; 36.5% female) were included. Clinically significant anxiety symptoms (HADS-anxiety ≥8) were present in 63.5% (n = 129) of family carers, depression symptoms (HADS-depression ≥8) were in 34% (n = 69) and both were in 27.1% (n = 55). Perceived burden [odds ratio (OR) 1.04, 95% confidence intervals (CI) = 1.01-1.06; 1.05, 95% CI = 1.03-1.07] and patients' activities limitation (OR 1.32, 95% CI = 1.01-1.79; 1.41, 95% CI = 1.01-1.96) were significant predictors of anxiety and depression symptoms. Anxiety symptoms were also predicted by female gender (OR 0.33, 95% CI = 0.16-0.66) and depression symptoms by older age (OR 1.03, 95% CI = 1.01-1.06). Family carers of patients with COPD experience anxiety and depression symptoms. Perceived burden, female gender, older age, and patient's activities limitation were predictors of these distressing symptoms. These findings highlight the need to address family carers' needs, namely by investigating the effectiveness of supportive interventions on family's psychological health.

  15. Mental health recovery: Lived experience of consumers, carers and nurses.

    PubMed

    Jacob, Sini; Munro, Ian; Taylor, Beverley Joan

    2014-09-06

    Abstract Background Mental health recovery is a prominent topic of discussion in the global mental health settings. The concept of mental health recovery brought about a major shift in the traditional philosophical views of many mental health systems. Aim The purpose of this article is to outline the results of a qualitative study on mental health recovery, which involved mental health consumers, carers and mental health nurses from an Area Mental Health Service in Victoria, Australia. This paper is part one of the results that explored the meaning of recovery. Methods The study used van Manen's hermeneutic phenomenology to analyse the data. Findings Themes suggested that the cohort had varying views on recovery that were similar and dissimilar. The similar views were categorised under two processes involving the self, an internal process and an external process. These two processes involved reclaiming various aspects of oneself, living life, cure or absence of symptoms and contribution to community. The dissimilar views involved returning to pre-illness state and recovery was impossible. Conclusion This study highlights the need for placing importance to the person's sense of self in the recovery process.

  16. Mental health recovery: lived experience of consumers, carers and nurses.

    PubMed

    Jacob, Sini; Munro, Ian; Taylor, Beverley Joan

    2015-01-01

    Background Mental health recovery is a prominent topic of discussion in the global mental health settings. The concept of mental health recovery brought about a major shift in the traditional philosophical views of many mental health systems. Aim The purpose of this article is to outline the results of a qualitative study on mental health recovery, which involved mental health consumers, carers and mental health nurses from an Area Mental Health Service in Victoria, Australia. This paper is Part One of the results that explored the meaning of recovery. Methods The study used van Manen's hermeneutic phenomenology to analyse the data. Findings Themes suggested that the cohort had varying views on recovery that were similar and dissimilar. The similar views were categorised under two processes involving the self, an internal process and an external process. These two processes involved reclaiming various aspects of oneself, living life, cure or absence of symptoms and contribution to community. The dissimilar views involved returning to pre-illness state and recovery was impossible. Conclusion This study highlights the need for placing importance on the person's sense of self in the recovery process.

  17. Facilitating change and adaptation: the experiences of current and bereaved carers of patients with severe chronic obstructive pulmonary disease.

    PubMed

    Philip, Jennifer; Gold, Michelle; Brand, Caroline; Miller, Belinda; Douglass, Jo; Sundararajan, Vijaya

    2014-04-01

    Patients with severe chronic obstructive pulmonary disease (COPD) experience substantial symptom burden, psychological and social morbidity. The experience of this illness has an impact beyond the patient. This study seeks to understand the experiences and needs of family carers of people with severe COPD. Semistructured interviews were held with current and bereaved carers of people with severe COPD. Several areas of content were targeted in the interviews, including the experience of caring for someone with COPD, views of treatment and prognosis, information and communication needs, and the understanding of palliative care. Data were analyzed thematically. The carers' and bereaved carers' experiences and needs around COPD are best understood as a dynamic of change, recognition, and adaptation. Carers faced many changes as the patients' general condition deteriorated. These were changes in the nature of caring tasks, in their relationships, and their own expectations. Carers usually recognized change had happened and sought to adapt through new approaches, new equipment, a new stance of thinking, and in most cases, continued caring. Within this theme of change, recognition, and adaptation were a series of subthemes: (1) the impact of caring, (2) recognizing the role of the carer, and (3) the needs of the carer including their needs from palliative care services. The impact of caring borne by family carers is substantial and life changing. Health professionals may assist carers in their role through acknowledgement, facilitating recognition of the changes that have occurred (and their implications), and enabling creative adaptive responses for carers. Such assistance is likely to enhance the ability of carers to continue in this demanding role.

  18. A longitudinal examination of dyadic distress patterns following a skills intervention for carers of adolescents with anorexia nervosa.

    PubMed

    Salerno, Laura; Rhind, Charlotte; Hibbs, Rebecca; Micali, Nadia; Schmidt, Ulrike; Gowers, Simon; Macdonald, Pamela; Goddard, Elizabeth; Todd, Gillian; Tchanturia, Kate; Lo Coco, Gianluca; Treasure, Janet

    2016-12-01

    Family interventions in anorexia nervosa (AN) have been developed to ameliorate maladaptive patterns of patient-carer interaction that can play a role in illness maintenance. The primary aim of this study is to examine the inter-relationship between baseline and post-treatment distress in dyads of carers and patients with AN to examine the interdependence between carers and patients. The secondary aim is to examine whether a carer skills intervention [Experienced Carer Helping Others (ECHO)] impacts on this inter-relationship. Dyads consisting of treatment-seeking adolescents with AN and their primary carer (n = 149; mostly mothers) were randomised to receive a carer skills intervention (ECHO) in addition to treatment as usual (TAU), or TAU alone, as part of a larger clinical trial. Carers and patients completed a standardised measure of psychological distress (The Depression, Anxiety, and Stress Scale) at baseline and 12 months post-treatment. The Actor Partner Interdependence Model was used to examine longitudinal changes in interdependence by treatment group. As expected, post-treatment levels of distress were related to baseline levels in both groups (actor effects). Moreover, carer distress at 12 months was related to patient distress at baseline for the TAU (partner effects), but not for the ECHO group. Finally, carers' distress change was not a significant predictor of patients' body mass index (BMI) change in the two treatment conditions. These findings are limited to predominantly mother-offspring dyads and may not generalise to other relationships. The ECHO intervention which is designed to teach carers skills in illness management and emotion regulation may be an effective addition to TAU for ameliorating interdependence of distress in patients and their primary carers over time.

  19. Which carers of family members at the end of life need more support from health services and why?

    PubMed

    McNamara, Beverley; Rosenwax, Lorna

    2010-04-01

    With end of life care a national priority in many countries, and the main place of care the family home, informal family carers are now considered the frontline of primary care. Yet we are insufficiently informed about the needs of carers, both during the time of caring and during bereavement. This study identifies which carers believed they did not get enough support from health services when caring for a terminally ill family member, what factors influenced perceptions of support, and whether inadequate support influenced the carer's health following the death of a family member. Unlike previous survey designs that explore end-of-life concerns, we were able to triangulate interview data from semi-structured telephone interviews (August 2005-June 2006) with a relatively large group of 1071 carers in Western Australia, with administrative records from death registrations, hospital morbidity and community care records from the 1071 deceased family members. The addition of administrative data allowed us to quantify hospital and community care service use. Data analysis consisted of summary statistics and logistic regressions for two groups of carers during the first few months of bereavement: those whose health got a bit/lot worse, and those who were not coping on most/all days. We found that carers were more likely to have poor health if they perceived they did not get enough support from health services and if the deceased family member did not die in the carer's preferred place of death. Additionally, carers were more likely to be not coping if they were aged 60 years or less, female, had lost a spouse/partner and the deceased family member did not die in the carer's preferred place. By identifying which carers are more vulnerable than others, carer education and practical support can be targeted to specific groups. Ideally resources for bereavement support should be extended into the months following the relative's death.

  20. Schizophrenia through the carers' eyes: results of a European cross-sectional survey.

    PubMed

    Svettini, A; Johnson, B; Magro, C; Saunders, J; Jones, K; Silk, S; Hargarter, L; Schreiner, A

    2015-09-01

    Schizophrenia is a serious mental disorder affecting approximately 29 million people worldwide. The ideal treatment and care of patients with schizophrenia should be provided by a multidisciplinary 'team' involving psychiatrists, nurses and other healthcare professionals, together with carers and patients. In light of the key role carers play in the care of patients with schizophrenia, the present survey was designed to assess the opinions of family members and friends of patients with schizophrenia across Europe and to ascertain their attitudes towards the illness, medication and adherence to medication. Among carers participating in this survey, there was widespread awareness of the issues involved in supporting patients with schizophrenia and the importance of their role in improving poor adherence to medication. Three differences in opinion emerged between the views of carers and psychiatrists; psychiatrists rely more on the patient themselves when assessing adherence than carers would recommend; in contrast to psychiatrists, many carers believe the illness itself contributes to non-adherence; two thirds of carers think that schizophrenia medication damages health (higher than estimated by psychiatrists). The findings from the present survey, taken together with the results from the Adherencia Terapéutica en la Esquizofrenia surveys of psychiatrists and nurses, support the need for a collaborative approach to the issue of treatment nonadherence. In particular, healthcare professionals should recognize the valuable contribution that family carers can make to improve treatment adherence and consequently clinical outcomes for patients with schizophrenia. Schizophrenia carries a significant burden for families providing care. The Adherencia Terapéutica en la Esquizofrenia (ADHES) carers' survey was designed to assess the opinions of family and friends of patients with schizophrenia across Europe and ascertain their attitudes towards the illness, medication and

  1. The role of family carers in the use of personal budgets by people with mental health problems.

    PubMed

    Hamilton, Sarah; Szymczynska, Paulina; Clewett, Naomi; Manthorpe, Jill; Tew, Jerry; Larsen, John; Pinfold, Vanessa

    2017-01-01

    Personal budgets aim to increase choice and independence for people with social care needs but they remain underused by people with mental health problems compared to other disability groups. The use of personal budgets may impact on families in a variety of ways, both positive and negative. This paper draws on interviews, undertaken in 2012-2013 with 18 family carers and 12 mental health service users, that explored experiences of family involvement in accessing and managing personal budgets for a person with mental health-related social care needs. The sample was drawn from three sites across England, with additional carers being recruited via voluntary sector networks. Our findings show that for many people with severe mental health needs who lack motivation and confidence to negotiate access to personal budgets, carers may provide the necessary support to enable them to benefit from this form of social care support. We illustrate the role carers may play in initiating, pursuing and maximising the level of support available through personal budgets. However, some carers interviewed considered that personal budget funding was reduced because of practitioners' assumptions about carers' willingness and ability to provide support. We also report perceived tensions between family carers and practitioners around appropriate involvement in decision-making. The study findings have implications for local authorities, practitioners and family carers in supporting the involvement of family carers in support for people with severe mental health problems.

  2. Using carer biographical narratives to explore factors involved in proxy reporting of quality of life in people with dementia.

    PubMed

    Robertson, Jane M

    2017-04-01

    Quality of life is an important focus of research on dementia, with interest in direct reports of people with dementia and proxy reports of their carers. By exploring the subjective perspectives of unpaid family carers and paid care workers, this study aims to understand how carers construct meaning in narratives about quality of life with dementia. A case-centred approach involved biographical narrative interviews with 10 carers to explore what was important for people with dementia to have a good quality of life. Detailed narrative analysis attended to the linguistic and structural features of accounts to consider how dementia is conceptualised by carers in the framing of quality of life. An individual's perception of how dementia impacts on awareness and behaviour was central to their understanding of quality of life. Carers who constructed dementia as a loss of skills and abilities were able to represent quality of life in positive terms despite the challenges of dementia. Carers who constructed dementia as eroding identity represented quality of life less positively and centred on their own means of coping with a challenging care situation. Findings highlight the importance of helping carers develop positive constructions of quality of life that are associated with understanding dementia as a loss of skills and abilities, rather than as a loss of self. Engaging with subjectivity in carers' biographical narrative accounts is important in the development of quality of life assessment to understand the meanings and emotions that underlie proxy perspectives.

  3. An evaluation of Cognitive Stimulation Therapy sessions for people with dementia and a concomitant support group for their carers.

    PubMed

    Bailey, Jan; Kingston, Paul; Alford, Simon; Taylor, Louise; Tolhurst, Edward

    2016-01-18

    This research aimed to ascertain the impact of a pragmatic Cognitive Stimulation Therapy course of 10 sessions on the cognitive function of people living with dementia and whether attending a concomitant carers support group was beneficial to carers. A mixed method quasi-experimental approach was adopted; data were collected pre- and post-intervention. The quantitative arm utilised three validated questionnaires rated by the carers. Qualitative data were collected via semi-structured interviews with carers regarding their perceptions of the impact of Cognitive Stimulation Therapy and the carers support group. Quantitative data analysis found no statistically significant differences within or between groups. The qualitative data demonstrated that carers perceived Cognitive Stimulation Therapy had some benefits for the people living with dementia, especially social benefits. Carers also perceived that attending the carers support group was beneficial for them in terms of gaining a better understanding of dementia, developing coping skills and having peer support. The study was limited in scale and further research with a larger sample, using direct measures of the impact of Cognitive Stimulation Therapy with people living with dementia and supplementary research exploring which characteristic of carers support groups are effective would be worthwhile.

  4. Reaching out or missing out: approaches to outreach with family carers in social care organisations.

    PubMed

    Moriarty, Jo; Manthorpe, Jill; Cornes, Michelle

    2015-01-01

    Outreach is advocated as a way of improving the uptake of services among underserved populations and of filling the gaps between mainstream services and the populations they are intended to support. Despite the policy emphasis on providing better help for family carers, research consistently shows that many of those providing unpaid care to a family member or friend report difficulties in finding out about the assistance to which they are entitled. This article presents results from a concurrent mixed-methods study, which aimed to describe different ways of working with family carers in adult social care departments and to collect the views of a range of stakeholders about the advantages and disadvantages of the approaches that were identified. A total of 86 semi-structured face-to-face interviews were undertaken with a purposive sample of funders, carers' workers, representatives of voluntary organisations and family carers based in four contrasting localities. An email survey was sent to all local councils in England with social care responsibilities and resulted in a 53% response rate. Data collection took place in 2012, with a small number of interviews being completed in 2011. Our approach to data analysis combined methodological, data and theoretical triangulation. The findings presented here mainly draw on the interview data to highlight the different models of outreach that we identified. The article highlights important differences between outreach and the provision of information. It concludes that organisations providing support for carers need to consider the advantages and disadvantages of different models of outreach as they develop carers' support and the extent to which different models might be more effective than others in reaching particular types of carer.

  5. How family carers engage with technical health procedures in the home: a grounded theory study.

    PubMed

    McDonald, Janet; McKinlay, Eileen; Keeling, Sally; Levack, William

    2015-07-06

    To explore the experiences of family carers who manage technical health procedures at home and describe their learning process. A qualitative study using grounded theory. New Zealand family carers (21 women, 5 men) who managed technical health procedures such as enteral feeding, peritoneal dialysis, tracheostomy care, a central venous line or urinary catheter. In addition, 15 health professionals involved in teaching carers were interviewed. Semistructured interviews were coded soon after completion and preliminary analysis influenced subsequent interviews. Additional data were compared with existing material and as analysis proceeded, initial codes were grouped into higher order concepts until a core concept was described. Interviewing continued until no new ideas emerged and concepts were well defined. The response of carers to the role of managing technical health procedures in the home is presented in terms of five dispositions: (1) Embracing care, (2) Resisting, (3) Reluctant acceptance, (4) Relinquishing and (5) Being overwhelmed. These dispositions were not static and carers commonly changed between them. Embracing care included cognitive understanding of the purpose and benefits of a procedure; accepting a 'technical' solution; practical management; and an emotional response. Accepting embrace is primarily motivated by perceived benefits for the recipient. It may also be driven by a lack of alternatives. Resisting or reluctant acceptance results from a lack of understanding about the procedure or willingness to manage it. Carers need adequate support to avoid becoming overwhelmed, and there are times when it is appropriate to encourage them to relinquish care for the sake of their own needs. The concept of embracing care encourages health professionals to extend their attention beyond simply the practical aspects of technical procedures to assessing and addressing carers' emotional and behavioural responses to health technology during the training process

  6. The practice of palliative care from the perspective of patients and carers.

    PubMed

    Sampson, Cathy; Finlay, Ilora; Byrne, Anthony; Snow, Veronica; Nelson, Annmarie

    2014-09-01

    The meaning that patients and carers attribute to their experience of palliative care is fundamental to the provision, practice and evaluation of optimal care. This analysis aims to establish contemporary key practices and priorities from the perspective of patients and carers. Thematic analysis was applied to 594 anonymised free text responses from patients and carers documenting their experiences of palliative care. The emotional experience of care is the most significant aspect documented by patients and carers. It refers to the process of care in key domains of respect, renewal, refuge and restorative care. Patients and carers described care as either enabling or directly provided. The emotional experience of care was not confined to psychosocial need and constituted a core practice drawing on professional expertise and interpersonal skills, some of which may be taken for granted by staff themselves. The emotional experience of care is examined as a practice rather than a topic, acknowledging that patients and carers documented the performance of care and the resulting impact in a variety of situations. The emotional experience of care comprises key aspects of contextual care facilitating autonomy and connectedness. It is embedded in relationships mediated by communication and tenor of care. The perspective of patients and carers places the emotional experience of palliative care centrally. This has implications for future service evaluation and the incorporation of this skill-based outcome alongside more traditional outcome measures such as the amelioration of physical symptoms. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  7. Monetary Valuation of Informal Care Based on Carers' and Noncarers' Preferences.

    PubMed

    Garrido-García, Silvia; Sánchez-Martínez, Fernando-Ignacio; Abellán-Perpiñán, José-María; van Exel, Job

    2015-09-01

    To elicit willingness-to-accept (WTA) values for informal care based on the preferences of informal carers and noncarers. Two surveys were conducted with a sample of carers (n = 202) and a sample of noncarers (n = 200). Individuals in both groups were asked three questions in which they had to state the minimum monetary compensation they would require (WTA) if they had to look after a person described in a hypothetical scenario for one extra hour per day. Furthermore, carers were asked for the compensation they would demand if they had to be in charge of their actual care recipient for one extra hour per day. No significant differences were found between the distributions of carers' and noncarers' WTA values. Overall, respondents' valuations were sensitive to and consistent with their preferences over the tasks to be carried out in the extra hour of informal care. On average, carers required a lower monetary compensation for one extra hour taking care of their loved one (mean/median WTA values €5.2/€4.5) than if they had to devote that time to look after the hypothetical care recipient (mean/median WTA values €6.4/€5.5). More than half of the carers stated the same value under the two caring situations, which suggests that carers' WTA values were influenced by their own experience providing informal care. Our results show that it is feasible to derive a monetary valuation for informal care from the preferences of noncarers. Copyright © 2015. Published by Elsevier Inc.

  8. The use of nurses' and carers' observations in the identification of poststroke depression.

    PubMed

    Lightbody, C Elizabeth; Auton, Malcolm; Baldwin, Robert; Gibbon, Bernard; Hamer, Samantha; Leathley, Michael J; Sutton, Chris; Watkins, Caroline L

    2007-12-01

    This paper is a report of a study to determine the accuracy and utility of an observational screening tool (Signs of Depression Scale), when rated by nurses and carers for detecting depression in patients who have recently had a stroke. Depression following a stroke is common and adversely affects recovery and rehabilitation. Identifying depression when patients have communication and cognitive difficulties is especially problematic. Screening tools which rely solely on observation may be beneficial in this group. A cross-sectional study of people admitted with an acute stroke compared a clinical diagnosis of depression by a psychiatrist (the gold standard) with the Signs of Depression Scale completed by nurses and carers. The agreement between nurses' and carers' ratings was also explored. Data were collected over 10 months (December 2004-October 2005). Seventy-one patients were included in the study, median age 70 [inter-quartile ranges (IQR) 59-76], including 40 (56.3%) males. The psychiatrist classified 25/71 (35.2%) patients as depressed. Using the recommended cut-point of 2 or more on the Signs of Depression Scale, the nurse and carer respectively rated 27/71 (38.0%) and 18/30 (60.0%) patients as potentially depressed. The proportion of patients correctly identified as depressed by the test (sensitivity) when rated by nurses was 64%, and the proportion of patients not depressed who were correctly identified by the test (specificity) was 61%, whereas carers achieved sensitivity 90% and specificity 35%. The optimal cut-point for carers was higher at 4 or more. Inter-rater agreement on the Signs of Depression Scale between nurses and carers was fair (ICC = 0.43, 95% CI: 0.09-0.68). The Signs of Depression Scale is easily completed by clinical staff, although we found the sensitivity when completed by nurses to be low. Information from carers shows potential to improve screening and it is important for nurses to value the knowledge and skills of carers in

  9. Skilled interaction among professional carers in special accommodations for adult people with learning disabilities.

    PubMed

    Antonsson, H; Aström, S; Lundström, M; Graneheim, U H

    2013-09-01

    Communicative difficulties affect interactions between people with learning disabilities and their carers. Despite such difficulties, however, some carers seem to interact successfully with people who have limited ability to communicate verbally and exhibit challenging behaviour. This study aims to illuminate skilled interaction among carers working in special accommodations for people with learning disabilities. Interactions between 16 caregivers and 11 residents with learning disabilities were recorded on video. Verbal and non-verbal interaction skills among the carers were identified. Four caring situations with people with learning disabilities were chosen to illuminate skilled interaction. The transcribed text was subjected to qualitative content analysis and core stories were created. The results show that skilled interaction between the carers and the people with learning disabilities is based upon being confirming, sharing daily life experience, giving time and space, and using congruent and distinct language. In this paper we present examples that offer concrete suggestions of how to promote successful interaction and create meaning in the shared day-to-day life in special accommodations for people with learning disabilities.

  10. Involving carers in the teaching, learning and assessment of masters students.

    PubMed

    McSherry, Robert; Duggan, Sandra

    2016-01-01

    Involving patients and carers in teaching, learning and assessment focuses the students on person-centred care by providing the opportunity to listen to, and reflect on, the perspective of patient and/or carer and also allows the students the opportunity to work in partnership with them to effect meaningful change. This paper presents an example at Teesside University where two informal carers have been involved as partners in the programme team of The Master of Arts in Advancing Practice over the past four years. In year two of the programme, the student is required to work within their organisation and governance policies to identify, implement and evaluate a practice development change project. Involving carers at critical points throughout the year has enriched, supported and challenged the students' learning. Evaluation has highlighted the role that carers can play in bringing a new dimension to the students' learning experience. The authors believe that direct involvement of this kind has much potential for other programmes in improving health and social care education which, in turn, will improve health and social care services. Copyright © 2015. Published by Elsevier Ltd.

  11. The effects of informal carers' characteristics on their information needs: The information needs state approach.

    PubMed

    Alzougool, Basil; Chang, Shanton; Gray, Kathleen

    2017-09-01

    There has been little research that provides a comprehensive account of the nature and aspects of information needs of informal carers. The authors have previously developed and validated a framework that accounts for major underlying states of information need. This paper aims to apply this framework to explore whether there are common demographic and socioeconomic characteristics that affect the information needs states of carers. A questionnaire about the information needs states was completed by 198 carers above 18 years old. We use statistical methods to look for similarities and differences in respondents' information needs states, in terms of the demographic and socioeconomic variables. At least one information needs state varies among carers, in terms of seven demographic and socioeconomic variables: the age of the patient(s) that they are caring for; the condition(s) of the patient(s) that they are caring for; the number of patients that they are caring for; their length of time as a carer; their gender; the country that they live in; and the population of the area that they live in. The findings demonstrate the utility of the information needs state framework. We outline some practical implications of the framework.

  12. Evaluation of quality of life of carers of Italian spinoni with idiopathic epilepsy

    PubMed Central

    De Risio, Luisa; Freeman, Julia; Shea, Anita

    2016-01-01

    The carers of all UK Kennel Club registered Italian spinoni (IS) born between January 1, 2000 and December 31, 2011 were invited to participate in the study. The carers of 47 of 63 IS diagnosed with idiopathic epilepsy (IE) returned the questionnaire, which included numerous questions on various aspects of IE including the effect of IE on the dog's carer's quality of life. Median epileptic seizure number in the three months before study end or death was five epileptic seizures, 72 per cent of dogs had cluster seizures, 94 per cent of dogs were administered one or more antiepileptic medications and 36 per cent of dogs were euthanased due to poorly controlled IE. Seventy-one per cent and 65 per cent of the participants were moderately to extremely worried about the frequency and severity of their dog's epileptic seizures, respectively. Caring for an IS with IE caused conflict with the carer's work, education or daily activity often or very often in 50 per cent of the participants. Overall the limitations on the carer's life due to caring for an IS with IE were considered as very to extremely bothersome in 29 per cent of the participants, a little to moderately bothersome in 40 per cent of the participants and not at all bothersome in 31 per cent of the participants. PMID:27403328

  13. A randomized controlled trial of bibliotherapy for carers of young people with first-episode psychosis.

    PubMed

    McCann, Terence V; Lubman, Dan I; Cotton, Sue M; Murphy, Brendan; Crisp, Kingsley; Catania, Lisa; Marck, Claudia; Gleeson, John F M

    2013-11-01

    Caring for young people with first-episode psychosis (FEP) is challenging and can adversely affect carer well-being, with limited evidence-based support materials available. We aimed to examine whether completion of a self-directed problem-solving bibliotherapy among carers of young people with FEP led to a better experience of caring, less distress and expressed emotion, and better general health than carers who only received treatment as usual (TAU). A randomized controlled trial was conducted across two early-intervention psychosis services in Melbourne, Australia. A total of 124 carers were randomized to problem-solving bibliotherapy intervention (PSBI) or TAU and assessed at baseline, 6-week and 16-week follow-up. Intent-to-treat analyses were carried out and indicated that recipients of PSBI had a more favorable experience of caring than those receiving TAU, and these effects were sustained at both follow-up time points. Across the other measures, both groups demonstrated improvements by week 16, although the PBSI group tended to improve earlier. The PSBI group experienced a greater reduction in negative emotional evaluations of the need to provide additional support to young people with FEP than the TAU group by week 6, while the level of psychological distress decreased at a greater rate from baseline to 6 weeks in the PSBI compared with the TAU group. These findings support the use of problem-solving bibliotherapy for first-time carers, particularly as a cost-effective adjunct to TAU.

  14. Australian mental health consumers and carers expect more health management information from community pharmacy.

    PubMed

    Fejzic, Jasmina; Knox, Kathy; Hattingh, Hendrika Laetitia; Mey, Amary; McConnell, Denise; Wheeler, Amanda J

    2017-03-16

    To identify the health management information needs of Australian mental health consumers and carers and explore the role of community pharmacy in meeting those needs. Interviews and focus groups were conducted with a purposive convenience sample of 74 mental health consumers and carers across three Australian states, representing metropolitan, rural and remote settings, including those with culturally and linguistically diverse backgrounds. Recruitment and interviews continued until data saturation was reached. Interviews and group discussions were digitally recorded and transcribed verbatim, and data were managed using NVivo(®) software. A 'coding framework' or set of themes was created, and all transcripts were coded accordingly. Thematic analysis was informed by a general inductive approach. Participants had unmet needs for information from community pharmacy. They expressed the requirement for receiving easy-to-understand, relevant medication information about mental health management from community pharmacy staff, communicated in a respectful way, with clear and comprehensive medication labelling, while respecting consumer privacy. The information needs of mental health consumers and carers remain largely unmet within Australian community pharmacy. This was particularly evident regarding the provision of information about adverse effects of medicines. The overall perceived lack of information is experienced as disempowering. Australian community pharmacy is well placed to respond to the unmet demand for information needs of mental health consumers and carers. While many community pharmacies are embracing the principles of patient-centred care, there is an opportunity to optimise the quality of care provided to mental health consumers and carers. © 2017 Royal Pharmaceutical Society.

  15. Barriers to genuine consumer and carer participation from the perspectives of Australian systemic mental health advocates.

    PubMed

    Gee, Alison; McGarty, Craig; Banfield, Michelle

    2016-06-01

    Consumer and carer participation in mental health service development and evaluation has widespread nominal support. However, genuine and consistent participation remains elusive due to systemic barriers. This paper explores barriers to reform for mental health services from the perspectives of consumers and carers actively engaged in advocating for improvements in the mental health system. Qualitative research with two mental health systemic advocacy organisations analysed 17 strategic communication documents and nine interviews to examine barriers to reform and participation identified by consumer and carer advocates and staff. A number of individual-level barriers were described, however advocates gave more focus to systemic barriers, for which five themes emerged. These reflected lack of awareness, limited participation opportunities, slow progress for change, policy issues and mental health culture including stigma. Findings highlight systemic barriers to participation for consumer and carer advocates as a whole and the influence of these barriers on the individual experiences of those engaged in advocacy and representation work. Participants also emphasised the need for leadership to overcome some of these obstacles and move towards genuine consumer and carer participation and reform. Findings are discussed in the context of power within mental health systems.

  16. Interprofessional teamwork in stroke care: Is it visible or important to patients and carers?

    PubMed

    Hewitt, Gillian; Sims, Sarah; Greenwood, Nan; Jones, Fiona; Ross, Fiona; Harris, Ruth

    2015-01-01

    Interprofessional teamwork is seen in healthcare policy and practice as a key strategy for providing safe, efficient and holistic healthcare and is an accepted part of evidence-based stroke care. The impact of interprofessional teamwork on patient and carer experience(s) of care is unknown, although some research suggests a relationship might exist. This study aimed to explore patient and carer perceptions of good and poor teamwork and its impact on experiences of care. Critical incident interviews were conducted with 50 patients and 33 carers in acute, inpatient rehabilitation and community phases of care within two UK stroke care pathways. An analytical framework, derived from a realist synthesis of 13 'mechanisms' (processes) of interprofessional teamwork, was used to identify positive and negative 'indicators' of teamwork. Participants identified several mechanisms of teamwork, but it was not a subject most talked about readily. This suggests that interprofessional teamwork is not a concept that is particularly important to stroke patients and carers; they do not readily perceive any impacts of teamwork on their experiences. These findings are a salient reminder that what might be expected by healthcare professionals to be important influences on experience may not be perceived to be so by patients and carers.

  17. Predicting anxiety in carers of people with dementia: the role of trait emotional intelligence.

    PubMed

    Weaving, Jessica; Orgeta, Vasiliki; Orrell, Martin; Petrides, K V

    2014-07-01

    Trait emotional intelligence (trait EI) is a personality dimension related to affect that has been shown to predict psychopathology. The objective of the present study was to examine the predictive validity of trait EI in explaining anxiety symptoms in family carers of people with dementia. A cross-sectional survey was conducted with a convenience sample of 203 dementia family caregivers. We used the Trait Emotional Intelligence Questionnaire - Short Form (TEIQue-SF) to measure trait EI in carers. The predictive validity of the scale in explaining anxiety was tested via regression analysis. Bivariate correlational analysis indicated that lower levels of trait EI were related to higher perceived burden, higher anxiety and depression, and poorer self-rated health in carers. Multiple regression analyses indicated that trait EI was a significant predictor of anxiety symptoms after accounting for known factors influencing outcomes for caregivers. Trait EI also showed strong predictive validity in relation to psychosocial outcomes in carers. Trait EI plays an important role in predicting anxiety in dementia caregivers. Theoretical models and interventions aimed at carers of people with dementia should take into account aspects of personality.

  18. Supporting working carers: do policies in England and The Netherlands reflect 'doulia rights'?

    PubMed

    Arksey, Hilary; Morée, Marjolein

    2008-12-01

    Governments of advanced European welfare states with ageing populations are struggling to reconcile what seem to be conflicting policies. On the one hand, they are trying to increase the labour market participation of women and older workers. On the other hand, they are making more demands on people to care for disabled, chronically ill and frail older relatives and friends. Those caregivers are more likely to be women and older people. In this paper, we present the policies and experiences of carers from two countries that differ in type of welfare state, health and social care system and labour market context: England and The Netherlands. The aim was to compare English and Dutch policy measures for carers and examine their impact with evidence from two studies of people who combine work and care. The analysis is informed by the theoretical concepts of 'doulia' (whereby the state, employers and other sections of society reciprocate carers and other dependency workers for their unpaid caregiving) and 'doulia rights' (a carer's right to provide care without the risk of impoverishment). The evidence suggests that English and Dutch carers' policies have different strengths and weaknesses, but in neither country do they show strong commitment to the right to doulia.

  19. [Perseverance time of informal carers: a new concept in dementia care : Validation and exploration].

    PubMed

    Kraijo, H

    2016-09-01

    The aim of this study was to introduce the concept of perseverance time of informal carers of relatives with dementia living at home. During 2 years data were collected from 223 informal carers of persons with dementia and the care situation. Convergent validity was assessed by looking at associations of perseverance time with validated instruments for measuring subjective burden and happiness. Content validity was evaluated by performing bi- and multivariate correlations between perseverance time and characteristics of persons with dementia, informal carers and care situations. Correlation coefficients between perseverance time and the validated measures of burden and happiness were significant. Health of the person with dementia, informal carer living apart from the person with dementia, and male gender of informal carer were positively associated with perseverance time; need for supervision, intensity of informal care provision, and reductions in working hours and hobbies in order to be able to provide care negatively. The predictive validity was significant with a perseverance time up to 2 years. This investigation provides a first indication of the validity of the concept of perseverance time, but replication is necessary. In healthcare practice persevering time provides clues for early detection of overburdening and crises situations.

  20. Why carers use adult day respite: a mixed method case study

    PubMed Central

    2014-01-01

    Background We need to improve our understanding of the complex interactions between family carers’ emotional relationships with care-recipients and carers use of support services. This study assessed carer’s expectations and perceptions of adult day respite services and their commitment to using services. Methods A mixed-method case study approach was used with psychological contract providing a conceptual framework. Data collection was situated within an organisational case study, and the total population of carers from the organisation’s day respite service were approached. Fifty respondents provided quantitative and qualitative data through an interview survey. The conceptual framework was expanded to include Maslow’s hierarchy of needs during analysis. Results Carers prioritised benefits for and experiences of care-recipients when making day respite decisions. Respondents had high levels of trust in the service and perceived that the major benefits for care-recipients were around social interaction and meaningful activity with resultant improved well-being. Carers wanted day respite experiences to include all levels of Maslow’s hierarchy of needs from the provision of physiological care and safety through to the higher levels of belongingness, love and esteem. Conclusion The study suggests carers need to trust that care-recipients will have quality experiences at day respite. This study was intended as a preliminary stage for further research and while not generalizable it does highlight key considerations in carers’ use of day respite services. PMID:24906239

  1. Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability.

    PubMed

    Taggart, Laurence; Truesdale-Kennedy, Maria; Ryan, Assumpta; McConkey, Roy

    2012-09-01

    Planning for the future care of adults with an intellectual disability after the main family carer ceases their care, continues to be a sensitive and difficult time posing challenges for service providers internationally. Limited research has been undertaken on this topic because until recently, people with intellectual disability usually pre-deceased their parents. This study examined ageing carers' preferences for future care and the support systems required to make such future plans. The study was conducted in one region of the United Kingdom with a high proportion of family carers. A mixed methods design was employed. In Stage 1, a structured questionnaire was used to collate information on the health, caregiving demands and future planning preferences of 112 parent and sibling carers; aged 60-94 years. In Stage 2, 19 in-depth semistructured interviews were undertaken with a sample of carers to explore a range of issues around future planning. Over half of the carers were lone carers, mainly female, with many reporting a wide range of health problems. A third of these carers reported that their caregiving resulted in high levels of anxiety. The main preference of the carers was for the person to remain in the family home, with either the family and/or paid staff to support them. A minority of parent carers preferred the person to move into the home of a sibling, although some favoured the person moving to a residential facility with other people with intellectual disabilities. The majority of carers did not want their relative to move into an older people's residential/nursing facility. In the qualitative data, four main themes were identified around future planning: unremitting apprehension, the extent of planning, obstacles encountered and solutions for future planning. Avoidance, lack of guidance and a lack of appropriate residential provision were cited as obstacles to making future plans compounded by the emotional upset experienced by carers in thinking

  2. Stressors and common mental disorder in informal carers – An analysis of the English Adult Psychiatric Morbidity Survey 2007

    PubMed Central

    Stansfeld, Stephen; Smuk, Melanie; Onwumere, Juliana; Clark, Charlotte; Pike, Cleo; McManus, Sally; Harris, Jenny; Bebbington, Paul

    2014-01-01

    This study investigates potential explanations of the association between caring and common mental disorder, using the English Adult Psychiatric Morbidity Survey 2007. We examined whether carers are more exposed to other stressors additional to caring – such as domestic violence and debt – and if so whether this explains their elevated rates of mental disorder. We analysed differences between carers and non-carers in common mental disorders (CMD), suicidal thoughts, suicidal attempts, recent stressors, social support, and social participation. We used multivariate models to investigate whether differences between carers and non-carers in identifiable stressors and supports explained the association between caring and CMD, as measured by the revised Clinical Interview Schedule. The prevalence of CMD (OR = 1.64 95% CI 1.37–1.97), suicidal thoughts in the last week (OR = 2.71 95% CI 1.31–5.62) and fatigue (OR = 1.33 95% CI 1.14–1.54) was increased in carers. However, caring remained independently associated with CMD (OR = 1.58 1.30–1.91) after adjustment for other stressors and social support. Thus caring itself is associated with increased risk of CMD that is not explained by other identified social stressors. Carers should be recognized as being at increased risk of CMD independent of the other life stressors they have to deal with. Interventions aimed at a direct reduction of the stressfulness of caring are indicated. However, carers also reported higher rates of debt problems and domestic violence and perceived social support was slightly lower in carers than in non-carers. So carers are also more likely to experience stressors other than caring and it is likely that they will need support not only aimed at their caring role, but also at other aspects of their lives. PMID:25259657

  3. Exploring the Care Relationship between Grandparents/Older Carers and Children Infected with HIV in South-Western Uganda: Implications for Care for Both the Children and Their Older Carers

    PubMed Central

    Rutakumwa, Rwamahe; Zalwango, Flavia; Richards, Esther; Seeley, Janet

    2015-01-01

    The care of children orphaned by HIV/AIDS in sub-Saharan Africa is often undertaken by grandparents, yet little is known about the care relationship between grandparent and grandchild. Our aim was to examine this relationship to understand the needs and responsibilities of both the HIV positive child and older carer and the nature of the relationship, and to assess the implications for care for the children and the older carers. A qualitative study was conducted with 40 purposively sampled children (13–17 years) and their older carers (50 years and above). Participants were recruited from two clinics in south-western Uganda. Up to three semi-structured interviews were held with each participant. Data were analysed using a thematic framework approach. We found that the care relationship was mostly reciprocal: HIV positive children depended on carers for basic and health needs and carers counted on the children for performing tedious household tasks. The relationship was also characterised by challenges, sometimes causing tension between child and carer. We conclude that: (1) interventions targeting HIV positive children need to also address the needs of older carers, and (2) carers and children would benefit from psychosocial support and social protection. PMID:25689350

  4. The Spanish Validation of the Accommodation and Enabling Scale for Eating Disorders Among Carers: A Pilot Study.

    PubMed

    Quiles Marcos, Yolanda; Quiles Sebastián, María José; Pamies Aubalat, Lidia; Sepúlveda García, Ana Rosa; Treasure, Janet

    2016-01-01

    Literature suggests that families may accommodate patients' symptoms in attempts to alleviate family conflict and stress. These accommodating and enabling behaviours may have a negative impact on carers and those they care for. There are no self-report questionnaires validated in Spanish to measure accommodation among relatives of patients with an eating disorder. The aim of this study was to examine the psychometric properties of the Spanish version of the Accommodation and Enabling Scale for Eating Disorders (AESED-S) among relatives of eating disorder patients. A cross-sectional study of 90 relatives was carried out to explore the factor structure, reliability and validity of the AESED-S. The internal consistency of the Spanish version of the AESED subscales was good, ranging from .89 to .81. The correlation of the five subscales with conceptually related measures (negative caregiving experience and distress) supports the convergent validity of this instrument in this sample. Results indicated that the Spanish version of the AESED provides a reliable and valid tool for assessing family accommodation in the context of having a relative with an eating disorder.

  5. HELPING PARENTS/CARERS TO GIVE MEDICINES TO CHILDREN IN HOSPITAL.

    PubMed

    Williams, Lauren; Caldwell, Neil; Collins, Elizabeth

    2016-09-01

    Medicines given to children in hospital are often prepared, checked and administered by two-registered nurses. Children are more likely to accept medicines given by a parent/carer1 but many hospital policies do not support such practice. Indeed the Trusts Medicines Management Policy allows single person medicines administration, except for children, but does not specify how medicine preparation and administration should take place or who should witness this. Our aim was to identify ways of increasing parent/carer involvement in giving medicines to children in hospital. ▸ Measure time delays with the current administration process▸ Identify obstacles that may prevent parent/carer involvement in giving medicines▸ Identify how to overcome potential/perceived problems with parent involvement▸ Determine parent/carer opinions of their involvement in giving medicines▸ Assess single nurse checking and parent administration of medicines Drug rounds were observed to identify time delays in medicines administration. A list of nineteen low risk medicines was proposed for parent administration with single nurse preparation. Focus groups were conducted, using structured questions, to get healthcare professionals perspective on the proposed changes and to approve a list of low risk medicines. Parents/carers were invited to complete a questionnaire regarding their involvement. Following Drug and Therapeutics Committee approval, parents/carers administered medicines with single nurse preparation during a trial period. Administration of twenty-one medicines was observed under current practice. Delays were observed in all cases: average delay 6.5 minutes. Delays of 10 minutes were observed due to children fighting against having medicines administered by a nurse. Delays in 28% of cases were due to getting another nurse to check the preparation and seventeen of the twenty-one medicines observed where not in the medicines locker. Such delays often lead to parents

  6. Adding SUGAR: service user and carer collaboration in mental health nursing research.

    PubMed

    Simpson, Alan; Jones, Julia; Barlow, Sally; Cox, Leonie

    2014-01-01

    SUGAR (Service User and Carer Group Advising on Research) is an initiative established to develop collaborative working in mental health nursing research between mental health service users, carers, researchers, and practitioners at City University London, United Kingdom. This article will describe the background of SUGAR; how the group operates; some of the achievements to date, including researcher reflections; and case studies of how this collaboration influences our research. Written reflective narratives of service user and carer experiences of SUGAR were analyzed using constant comparative methods by the members. Common themes are presented with illustrative quotes. The article highlights the benefits and possible limitations identified to date by members of SUGAR, outlines future plans, and considers the findings in relation to literature on involvement and empowerment. This article, written by staff and members of SUGAR, is the first venture into collaborative writing of the group and reflects the shared ethos of collaborative working. Copyright 2014, SLACK Incorporated.

  7. A feasibility randomised controlled trial of the DECIDE intervention: dementia carers making informed decisions

    PubMed Central

    Lord, Kathryn; Livingston, Gill

    2017-01-01

    Summary Family carers report high levels of decisional conflict when deciding whether their relative with dementia can continue to be cared for in their own home. We tested, in a feasibility randomised controlled trial, the first decision aid (the DECIDE manual) aiming to reduce such conflict. Twenty family carers received the DECIDE intervention, and 21 received usual treatment. The intervention group had reduced decisional conflict compared with controls (mean difference −11.96, 95% confidence interval −20.10 to −3.83, P=0.005). All carers receiving the intervention completed and valued it, despite some still reporting difficulties with family conflict and problems negotiating services. Declaration of interest None. Copyright and usage © The Royal College of Psychiatrists 2017. This is an open access article distributed under the terms of the Creative Commons Non-Commercial, No Derivatives (CC BY-NC-ND) license. PMID:28243460

  8. The Experience of Carers in Supporting People with Intellectual Disabilities through the Process of Bereavement: An Interpretative Phenomenological Analysis

    ERIC Educational Resources Information Center

    Handley, Emily; Hutchinson, Nick

    2013-01-01

    Background: This study explored the personal experiences of family carers and residential care staff in supporting adults with intellectual disabilities through the process of bereavement. Method: A semi-structured interview was used to interview 11 carers on their experience of supporting adults with intellectual disabilities through the process…

  9. Effectiveness of psychoeducational interventions for family carers of people with psychosis: A systematic review and meta-analysis.

    PubMed

    Sin, Jacqueline; Gillard, Steve; Spain, Debbie; Cornelius, Victoria; Chen, Tao; Henderson, Claire

    2017-08-01

    Psychoeducational interventions for family carers of people with psychosis are effective for improving compliance and preventing relapse. Whether carers benefit from these interventions has been little explored. This systematic review investigated the effectiveness of psychoeducation for improving carers' outcomes, and potential treatment moderators. We searched for randomised controlled trials (RCTs) published in English or Chinese in eight databases. Carers' outcomes included wellbeing, quality of life, global morbidities, burden, and expressed emotion. Thirty-two RCTs were included, examining 2858 carers. Intervention duration ranged from 4 to 52weeks, and contact times ranged from 6 to 42hours. At post intervention, findings were equivocal for carers' wellbeing (SMD 0.103, 95% CI -0.186 to 0.392). Conversely, psychoeducation was superior in reducing carers' global morbidities (SMD -0.230, 95% CI -0.386 to -0.075), perceived burden (SMD -0.434, 95% CI -0.567 to -0.31), negative caregiving experiences (SMD -0.210, 95% CI -0.396 to -0.025) and expressed emotion (SMD -0.161, 95% CI -0.367 to -0.045). The lack of available data precluded meta-analysis of outcomes beyond short-term follow-up. Meta-regression revealed no significant associations between intervention modality, duration, or contact time and outcomes. Further research should focus on improving carers' outcomes in the longer-term and identifying factors to optimise intervention design. Copyright © 2017 The Authors. Published by Elsevier Ltd.. All rights reserved.

  10. Intensive Interaction Training for Paid Carers: "Looking, Looking and Find out When They Want to Relate to You"

    ERIC Educational Resources Information Center

    Nagra, Maninder K.; White, Rose; Appiah, Afua; Rayner, Kelly

    2017-01-01

    Background: Intensive interaction (II) is a communication approach useful for working with people with severe intellectual disabilities. Health and social care providers offer II training courses to paid carers working in local services with the goal of improving social communication for their clients. Materials and methods: Eight paid carers who…

  11. Negative Impact and Positive Value in Caregiving: Validation of the COPE Index in a Six-Country Sample of Carers

    ERIC Educational Resources Information Center

    Balducci, Cristian; Mnich, Eva; McKee, Kevin J.; Lamura, Giovanni; Beckmann, Anke; Krevers, Barbro; Wojszel, Z. Beata; Nolan, Mike; Prouskas, Constantinos; Bien, Barbara; Oberg, Birgitta

    2008-01-01

    Purpose: The present study attempts to further validate the COPE Index on a large sample of carers drawn from six European countries. Design and Methods: We used a cross-sectional survey, with approximately 1,000 carers recruited in each of six countries by means of a common standard evaluation protocol. Our saturation recruitment of a designated…

  12. Depression among carers of AIDS-orphaned and other-orphaned children in Umlazi Township, South Africa.

    PubMed

    Kuo, Caroline; Operario, Don; Cluver, Lucie

    2012-01-01

    South Africa faces the challenge of supporting the well-being of adults caring for growing numbers of AIDS-orphaned children. These adults play a critical role in responses to the epidemic, but little information exists in regard to their mental health needs. This paper reports on findings from n=1599 adults, recruited through representative household sampling, who serve as primary carers for children in Umlazi Township, an HIV-endemic community. Overall, 22% of participants were carers of AIDS-orphaned children, 11% were carers of other-orphaned children and 67% were carers of non-orphaned children. Prevalence of depression was 30.3%. Orphan carers, regardless of whether they cared for AIDS-orphaned or other-orphaned children, were significantly more likely than carers of non-orphaned children to meet the clinical threshold for depression (35.2% vs. 27.9%, p < 0.01). In multivariate logistic regressions, food insecurity and being a female carer were identified as additional risk factors for greater depression. In contrast, households with access to running water and households dependent on salaries as the main source of income were identified as protective factors for disparities in depression. Mental health interventions are urgently needed to address an increased risk for depression among all orphan carers, not just those caring for AIDS-orphaned children.

  13. Depression amongst carers of AIDS-orphaned and other-orphaned children in Umlazi Township, South Africa

    PubMed Central

    Kuo, Caroline; Operario, Don; Cluver, Lucie

    2011-01-01

    South Africa faces the challenge of supporting the well-being of adults caring for growing numbers of AIDS-orphaned children. These adults play a critical role in responses to the epidemic but little information exists in regards to their mental health needs. This paper reports on findings from n=1599 adults, recruited through representative household sampling, who serve as primary carers for children in Umlazi Township, a HIV endemic community. Overall, 22% of participants were carers of AIDS-orphaned children, 11% were carers of other-orphaned children, and 67% were carers of non-orphaned children. Prevalence of depression was 30.3%. Orphan carers, regardless of whether they cared for AIDS-orphaned and other-orphaned children, were significantly more likely than carers of non-orphaned children to meet the clinical threshold for depression (35.2% versus 27.9%, p<.01). In multivariate logistic regressions, food insecurity and being a female carer were identified as additional risk factors for greater depression. In contrast, households with access to running water and households dependent on salaries as the main source of income were identified as protective factors for disparities in depression. Mental health interventions are urgently needed to address an increased risk for depression amongst all orphan carers, not just those caring for AIDS-orphaned children. PMID:22081931

  14. A systematic review of the economic evidence for interventions for family carers of stroke patients

    PubMed Central

    Heslin, Margaret; Forster, Anne; Healey, Andy; Patel, Anita

    2016-01-01

    Objectives: To examine the economic evidence for interventions aimed at family carers of stroke patients. Data sources: Searches (limited to those published in English since 1990) were performed in key databases along with hand searches of relevant papers. Review methods: Papers were restricted to studies including any economic data (broadly defined) for any intervention targeting carers explicitly or explicitly referring to a carer element, beyond involving carers in the care or intervention for patients (i.e. more than just carers being invited to observe an intervention targeted at the patient). Two reviewers independently screened full papers and extracted data using guidance from the National Institute for Health and Care Excellence, and quality assessment using the Newcastle-Ottawa Quality Assessment Scale (cohort studies), the Delphi list (randomised controlled trials) and guidelines on economic quality from the British Medical Journal. Data were reviewed descriptively as meta analyses were inappropriate due to non-comparability of studies. Results: Ten papers were included in the review. These were heterogeneous in their design, intervention and economic analyses making comparison difficult. Only three of the ten papers included economic evaluations. All three reported that the intervention was less costly and had better or equivalent outcomes than the control comparator although two of these were based on the same intervention using the same dataset. Conclusion: There is some limited evidence that interventions for family carers of stroke patients are effective and cost effective. However, due to variation in the types of interventions examined, little can be concluded regarding implications for clinical practice. PMID:25758943

  15. Carers' perspectives on an effective Indigenous health model for childhood asthma in the Torres Strait.

    PubMed

    Valery, Patricia C; Whop, Lisa J; Morseu-Diop, Noritta; Garvey, Gail; Masters, Ian B; Chang, Anne B

    2016-06-01

    To describe parents'/carers' views of the characteristics of a clinical service model shown to improve asthma outcomes. A randomised controlled study on education intervention for childhood asthma by Indigenous health care workers. Thursday Island, Horn Island and Bamaga. Thirty-five children received the intervention and 53 were in the control group. At the last study visit 12 months after enrolment, carers were asked to give feedback about the clinical service delivered by paediatric respiratory physicians and the asthma education intervention. Additional asthma education. Carers' responses to the open-ended questions were analysed separately by three Indigenous investigators who assigned codes and developed the themes. These were then cross-checked and combined to develop an overall interpretation of the data. The carers (n = 81) of 88 children in the Torres Strait region of North Queensland reported positively to the clinical service delivery. Service was rated as excellent = 26.8%, very good = 51.2%, good = 19.5% and poor = 2.4%. Parents'/carers' views about the clinical service model were grouped into seven themes: clear communication by health professionals, service delivery, professional approach, clear transfer of knowledge and education/clinical knowledge of asthma, established rapport/caregiver satisfaction, importance of coming into the local community, and areas of concern for the carers/parents. Community-based perspectives of an effective health service model include empowered Indigenous health care workers currently attached to the medical specialist service with elements of high expertise and appropriate cultural awareness that enabled clear communication and transfer of knowledge. © 2015 National Rural Health Alliance Inc.

  16. Prioritizing problems in and solutions to homecare safety of people with dementia: supporting carers, streamlining care.

    PubMed

    Tudor Car, Lorainne; El-Khatib, Mona; Perneczky, Robert; Papachristou, Nikolaos; Atun, Rifat; Rudan, Igor; Car, Josip; Vincent, Charles; Majeed, Azeem

    2017-01-19

    Dementia care is predominantly provided by carers in home settings. We aimed to identify the priorities for homecare safety of people with dementia according to dementia health and social care professionals using a novel priority-setting method. The project steering group determined the scope, the context and the criteria for prioritization. We then invited 185 North-West London clinicians via an open-ended questionnaire to identify three main problems and solutions relating to homecare safety of people with dementia. 76 clinicians submitted their suggestions which were thematically synthesized into a composite list of 27 distinct problems and 30 solutions. A group of 49 clinicians arbitrarily selected from the initial cohort ranked the composite list of suggestions using predetermined criteria. Inadequate education of carers of people with dementia (both family and professional) is seen as a key problem that needs addressing in addition to challenges of self-neglect, social isolation, medication nonadherence. Seven out of top 10 problems related to patients and/or carers signalling clearly where help and support are needed. The top ranked solutions focused on involvement and education of family carers, their supervision and continuing support. Several suggestions highlighted a need for improvement of recruitment, oversight and working conditions of professional carers and for different home safety-proofing strategies. Clinicians identified a range of suggestions for improving homecare safety of people with dementia. Better equipping carers was seen as fundamental for ensuring homecare safety. Many of the identified suggestions are highly challenging and not easily changeable, yet there are also many that are feasible, affordable and could contribute to substantial improvements to dementia homecare safety.

  17. Carers' Experiences, Needs, and Preferences During Inpatient Stroke Rehabilitation: A Systematic Review of Qualitative Studies.

    PubMed

    Luker, Julie; Murray, Carolyn; Lynch, Elizabeth; Bernhardsson, Susanne; Shannon, Michelle; Bernhardt, Julie

    2017-09-01

    To report and synthesize the experiences, needs, and preferences of carers of stroke survivors undergoing inpatient rehabilitation. MEDLINE, CINAHL, Embase, PsycINFO, and Web of Science were searched to March 2016. Reference lists of relevant publications were searched. No language restrictions were applied. Eligible qualitative studies reported the experiences of carers of stroke survivors who underwent inpatient rehabilitation. The search yielded 3532 records; 93 full-text publications were assessed for eligibility, and 34 documents (33 studies) were included. Comprehensiveness of reporting was assessed using the Consolidated Criteria for Reporting Qualitative Health Research framework. Data on the characteristics of included studies were independently extracted by 2 authors. Differences in data extraction between authors were resolved through discussion or by a third author. All text in studies' results and discussion sections were extracted for analysis. Extracted texts were analyzed inductively using thematic synthesis. Seven analytical themes were developed that related to the carers' experiences, needs, and preferences: (1) overwhelmed with emotions; (2) recognition as a stakeholder in recovery; (3) desire to be heard and informed; (4) persisting for action and outcomes; (5) being legitimate clients; (6) navigating an alien culture and environment; and (7) managing the transition home. This systematic review provides new insights into the experiences, needs, and preferences of carers of stroke survivors undergoing inpatient rehabilitation. Carers experienced distress as they navigated a foreign culture and environment without adequate communication and processes in place for their inclusion. We recommend deliberate efforts to provide a more inclusive environment that better supports and prepares carers for their new role. Copyright © 2017 American Congress of Rehabilitation Medicine. All rights reserved.

  18. Personal identity and the role of 'carer' among relatives and friends of people with multiple sclerosis.

    PubMed

    Hughes, Nic; Locock, Louise; Ziebland, Sue

    2013-11-01

    Informal caregiving continues to be a crucial part of health and social care provision in the developed world, but the processes by which the identity of informal caregiver is conferred, or assumed, remain unclear. In this article we draw on data from a qualitative research study which examined the experiences of family members and friends of people with multiple sclerosis (pwMS) to explore how they interpret the label 'carer'. We conducted narrative interviews with forty people throughout the United Kingdom between June 2011 and January 2012. Participants were spouses, partners, parents, children, siblings or friends of people who have had multiple sclerosis between 6 months and fifty years. We carried out thematic analysis of the interviews, informed by identity theory. Identity theory illuminated variation in peoples' perceptions of themselves as carers, suggesting that self-identification with the role and label of carer is nuanced, shifting and variable. We propose a taxonomy of caring activity including emotional support, personal care, physical care, household tasks, advocacy and activism and describe four categories, with fluid and overlapping boundaries, in which the identity of carer was apparently embraced, enforced, absorbed or rejected. Variability and fluidity in self-identification as a carer are related to apparent expectations about whether one should assume a caring role. Those who were caring from the more tangential (and less taken for granted) relationship of sibling or ex-partner were among those who apparently embraced the role. Those who were expected to assume the caring role (typically spouses) were not always comfortable with doing so. It may be difficult to gain acknowledgement from family members and others that they occupy the role of carer if people resist the label as a bureaucratisation of their personal relationships. Copyright © 2013 The Authors. Published by Elsevier Ltd.. All rights reserved.

  19. How family carers engage with technical health procedures in the home: a grounded theory study

    PubMed Central

    McDonald, Janet; McKinlay, Eileen; Keeling, Sally; Levack, William

    2015-01-01

    Objectives To explore the experiences of family carers who manage technical health procedures at home and describe their learning process. Design A qualitative study using grounded theory. Participants New Zealand family carers (21 women, 5 men) who managed technical health procedures such as enteral feeding, peritoneal dialysis, tracheostomy care, a central venous line or urinary catheter. In addition, 15 health professionals involved in teaching carers were interviewed. Methods Semistructured interviews were coded soon after completion and preliminary analysis influenced subsequent interviews. Additional data were compared with existing material and as analysis proceeded, initial codes were grouped into higher order concepts until a core concept was described. Interviewing continued until no new ideas emerged and concepts were well defined. Results The response of carers to the role of managing technical health procedures in the home is presented in terms of five dispositions: (1) Embracing care, (2) Resisting, (3) Reluctant acceptance, (4) Relinquishing and (5) Being overwhelmed. These dispositions were not static and carers commonly changed between them. Embracing care included cognitive understanding of the purpose and benefits of a procedure; accepting a ‘technical’ solution; practical management; and an emotional response. Accepting embrace is primarily motivated by perceived benefits for the recipient. It may also be driven by a lack of alternatives. Resisting or reluctant acceptance results from a lack of understanding about the procedure or willingness to manage it. Carers need adequate support to avoid becoming overwhelmed, and there are times when it is appropriate to encourage them to relinquish care for the sake of their own needs. Conclusions The concept of embracing care encourages health professionals to extend their attention beyond simply the practical aspects of technical procedures to assessing and addressing carers’ emotional and

  20. Family care for immigrants with dementia: The perspectives of female family carers living in The Netherlands.

    PubMed

    van Wezel, Nienke; Francke, Anneke L; Kayan-Acun, Emine; Ljm Devillé, Walter; van Grondelle, Nies J; Blom, Marco M

    2016-01-01

    The prevalence of dementia is increasing among non-western immigrants. It is known that family care is provided relatively often among immigrant groups. Until now, however, relatively little was known about how relatives of people with dementia in the immigrant communities perceive family care. This study therefore focuses on describing the perspectives of female Turkish, Moroccan and Surinamese Creole family carers in the Netherlands about providing family care to a close relative with dementia. Forty-one individual interviews and six focus group interviews (n=28) were held with female Turkish, Moroccan and Surinamese Creole family carers who are looking after a close relative with dementia. A qualitative analysis of the interviews has been carried out, supported by the software MaxQda. Related to their cultural and religious backgrounds, female family carers with Turkish, Moroccan or Surinamese Creole origins see family care as a task that they should carry out with respect and love. They feel that family care is superior to professional care and that it is principally a task for women. If men do have a role in family care, then it generally covers non-physical aspects. Despite the fact that the family carers interviewed listed aspects that make caring for a close relative with dementia difficult, they do say that they get a great deal of satisfaction from providing this care. In Turkish and Moroccan families in particular this type of care leads to more recognition and appreciation of the daughter or daughter-in-law who is giving it. Family carers of Turkish, Moroccan or Surinamese Creole origin derive a great deal of satisfaction from giving family care to a relative with dementia. This fulfilment largely outweighs the burden of care. Professional support or information for these family carers can be improved by also focusing on the positive aspects of providing family care instead of an exclusive focus on reducing the burden. © The Author(s) 2014.

  1. [Burden and quality of life in carers of patients with Alzheimer type dementia].

    PubMed

    Garre-Olmo, J; Hernández-Ferrándiz, M; Lozano-Gallego, M; Vilalta-Franch, J; Turón-Estrada, A; Cruz-Reina, M M; Camps-Rovira, G; López-Pousa, S

    To analyze the factors which affect the burden and quality of life in carers of patients with Alzheimer's disease. From a sample of 234 carers of patients in the Unit for Assessment of Memory and Dementia with a diagnosis of probable Alzheimer's disease, according to the scale of National Institute of Neurological and Communicative Disorders and Stroke/Alzheimer's Disease and Related Disorders Association (NINCS-ADRDA), and of minimal or slight severity, according to the Cambridge Mental Disorders of the Elderly Examination (CAMDEX) criteria, we obtained sociodemographic variables and administered the following questionnaires: Neuropsychiatric Inventory (NPI), Rapid Disability Rating Scale (RDRS-2), Quality of Life Questionnaire (QLQ) and Burden Interview (BI). The sex of the carers, the hours of attention to the basic activities of daily life (BADL) and the Cambridge Cognitive Examination (CAMCOQ), Minimental State Examination (MMSE), QLQ, NPI and RDRS-2 scores were related to the BI score. Multiple regression accepted the scoring for NPI, RDRS-2 and QLQ in the model. The QLQ score was associated with male sex of the patient, the age of the carer, employment status, whether or not he lived with the patient, with the family relationship, the hours of attention to the BADL and the scores on CAMCOG, MMSE, RDRS-2, NPI and BI. The multiple regression model included the age of the carer, the BI score and the hours of attention to the BADL. The non-cognitive symptoms, functional disability and poor perception of quality of life are factors affecting the burden and age of the carer, the hours of attention to the BADL and the burden affecting quality of life.

  2. Self-reported physical and mental health of Australian carers: a cross-sectional study

    PubMed Central

    Hussain, Rafat; Dillon, Gina; Ryan, Peta

    2016-01-01

    Objective To report on self-reported physical and mental health of informal carers in rural regions of New South Wales, Australia. Methods A cross-sectional community-based sample (n=222) of carers completed a questionnaire incorporating self-reported measures of health from validated international instruments including Medical Outcomes Study Scale (SF-36), the Centre for Epidemiology-Depression (CES-D) and Kessler-10 (K-10) Psychological Distress Scales, along with information on participant demographics and other key caregiving characteristics such as health condition of care recipient. Results Rural carers’ self-reported health was poor as evident on the SF-36 Physical and Mental Health component scores as well as each individual domain of the SF-36. Results from the CES-D and K-10 scores indicated very high rates of depressive symptoms and psychological distress. Over 70% of carers within the current study had CES-D scores indicative of depressive symptoms. Scores on the K-10 indicate almost half the carers were experiencing high levels of psychological distress, which is over 4 times the rate reported in the general Australian population. Conclusions and implications Results from this study were compared to Australian population normative data and were found to be significantly below Australian age-matched population norms for SF-36, CES-D and K-10. These findings illustrate the poor health profile of informal carers relative to the general Australian population, especially in terms of depressive symptoms and psychological distress. This highlights the need for additional support for rural carers in order to ease the accumulated mental and physical health burdens of this group. PMID:27625059

  3. Coping Well with Advanced Cancer: A Serial Qualitative Interview Study with Patients and Family Carers

    PubMed Central

    Roberts, Diane; Appleton, Lynda; Calman, Lynn; Large, Paul; Lloyd-Williams, Mari; Grande, Gunn

    2017-01-01

    Objectives To understand successful strategies used by people to cope well when living with advanced cancer; to explore how professionals can support effective coping strategies; to understand how to support development of effective coping strategies for patients and family carers. Design Qualitative serial (4–12 week intervals) interview study with people with advanced cancer and their informal carers followed by focus groups. The iterative design had a novel focus on positive coping strategies. Interview analysis focused on patients and carers as individuals and pairs, exploring multiple dimensions of their coping experiences. Focus group analysis explored strategies for intervention development. Participants 26 people with advanced (stage 3–4) breast, prostate, lung or colorectal cancer, or in receipt of palliative care, and 24 paired nominated informal/family carers. Setting Participants recruited through outpatient clinics at two tertiary cancer centres in Merseyside and Manchester, UK, between June 2012 and July 2013. Results 45 patient and 41 carer interviews were conducted plus 4 focus groups (16 participants). People with advanced cancer and their informal/family carers develop coping strategies which enable effective management of psychological wellbeing. People draw from pre-diagnosis coping strategies, but these develop through responding to the experience of living with advanced cancer. Strategies include being realistic, indulgence, support, and learning from others, which enabled participants to regain a sense of wellbeing after emotional challenge. Learning from peers emerged as particularly important in promoting psychological wellbeing through the development of effective ‘everyday’, non-clinical coping strategies. Conclusions Our findings challenge current models of providing psychological support for those with advanced cancer which focus on professional intervention. It is important to recognise, enable and support peoples’ own

  4. Explanatory models and openness about dementia in migrant communities: A qualitative study among female family carers.

    PubMed

    van Wezel, Nienke; Francke, Anneke L; Kayan Acun, Emine; Devillé, Walter Ljm; van Grondelle, Nies J; Blom, Marco M

    2016-06-15

    The prevalence of dementia is increasing among people with a Turkish, Moroccan and Surinamese-Creole background. Because informal care is very important in these communities, it is pertinent to see what explanations female family carers have for dementia and whether they can discuss dementia openly within the community and the family. Forty-one individual interviews and six focus group interviews (n = 28) were held with female Turkish, Moroccan and Surinamese Creole family carers who are looking after a close relative with dementia, and who live in The Netherlands. Qualitative analysis has been carried out, supported by the software MaxQda. The dominant explanations of dementia given by the female family carers interviewed are in line with what Downs et al. describe as the explanatory models 'dementia as a normal ageing process' and 'dementia as a spiritual experience'. In addition, some female family carers gave explanations that were about an interplay between various factors. Turkish and Moroccan informal caregivers ascribe the causes of dementia relatively often to life events or personality traits, whereas Surinamese Creole caregivers frequently mention physical aspects, such as past dehydration. However, the explanatory model 'dementia as a neuropsychiatric condition', which is dominant in Western cultures, was rarely expressed by the informal caregivers. The female family carers generally talked openly about the dementia with their close family, whereas particularly in the Turkish and Moroccan communities open communication within the broader communities was often hampered, e.g. by feelings of shame. Female family carers of Turkish, Moroccan or Surinamese Creole backgrounds often consider dementia as a natural consequence of ageing, as a spiritual experience, and/or as an interplay between various factors. They feel they can talk openly about dementia within their close family, while outside the close family this is often more difficult. © The Author

  5. Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease

    PubMed Central

    2014-01-01

    Background Dignity therapy is a brief psychotherapy that has been shown to enhance the end of life experience. Dignity therapy often involves family carers to support patients weakened by illness and family carers are also the usual recipients of the legacy documents created. No research to date has examined the impact of dignity therapy on family carers at the time of the intervention. This study examined the effects of dignity therapy on family carers of people with motor neurone disease (MND). Methods This is a cross-sectional study utilizing a one-group pre-test post-test design with 18 family carers of people diagnosed with MND. Outcomes measured caregiver burden, anxiety, depression, and hopefulness. Acceptability was measured with a questionnaire. Feasibility was assessed by examining family carers’ involvement in the therapy sessions, time taken to conduct sessions, and any special accommodations or deviations from the dignity therapy protocol. Results There were no significant pre-test post-test changes on the group level, but there were decreases in anxiety and depression on the individual level. Baseline measures indicate that 50% of family carers had moderate to severe scores for anxiety prior to dignity therapy. MND family carers saw benefits to the person with MND and to themselves after bereavement, but acceptability of dignity therapy at the time of the intervention was mixed with some family carers indicating it was helpful, some indicating it was harmful, and many expressing ambivalence. Dignity therapy involving MND family carers is feasible and the involvement of family carers has minimal impact on the therapy. Conclusion Dignity therapy is not likely to alleviate caregiver burden in MND family carers, but it may have the ability to decrease or moderate anxiety and depression in distressed MND family carers. Dignity therapy is feasible and generally acceptable to MND family carers. Dignity therapists may provide a better experience for family

  6. Physical health concerns of the patient, the family and the carer.

    PubMed

    McCrae, J

    2010-06-01

    Physical health monitoring is crucial in the light of current knowledge about the risks associated with schizophrenia and its treatment. Cooperation between psychiatrists, patients and informal carers can significantly enhance patient wellbeing in this regard. Moreover, an advocacy approach elevates patients from being passive recipients of care to active participants in an integrated system that has outcome benefits for all stakeholders. Considerable progress is being made in this regard, although there is still a long way to go to maximise the benefits of carer involvement in the global management of schizophrenia.

  7. Parents' and carers' views about emollients for childhood eczema: qualitative interview study

    PubMed Central

    Muller, I; Yardley, L; Lewis-Jones, S; Ersser, S; Little, P

    2016-01-01

    Objective Leave-on emollients form the mainstay of eczema treatment, but adherence is poor. We aimed to explore parents’/carers' views on effectiveness and acceptability of leave-on emollients for childhood eczema through secondary analysis of data from 2 qualitative data sets. Setting Study 1 recruited through mail-out from 6 general practices in southern England. Study 2 recruited from a feasibility trial of an intervention to support eczema self-care in 31 practices in the same area. Participants Study 1 included 28 interviews with carers of children aged ≤5 years with eczema. Study 2 included 26 interviews with carers of children aged ≤5 years with eczema. Methods Interviews followed semistructured guides: study 1 explored carers' understandings around eczema treatments in order to develop a web-based self-care support intervention; study 2 explored carers' understandings of eczema and eczema treatments after using the intervention. Interviews were carried out face to face or by telephone, audio-recorded and transcribed. Secondary analysis of data from both studies focused on views and experiences of emollient use. Data were analysed using an inductive thematic approach facilitated by NVivo V.10 software. Results In study 1, most participants felt emollients improved eczema but held mixed views about long-term use to prevent flare-ups. In study 2, where carers had used the web-based intervention, all participants held positive views about long-term emollient use. In both studies, participants expressed a range of preferences about emollient ‘thickness’; some felt that ‘thick’ emollients (ointments) were most effective, while others found these difficult to use. Carers described a process of ‘trial and error’, trying emollients suggested by professionals, friends and family, or bought over-the-counter. Carers expressed a need for understanding differences between products and their effective use. Conclusions Providing a rationale for long

  8. Change in psychological distress in longer-term oesophageal cancer carers: are clusters of illness perception change a useful determinant?

    PubMed

    Graham, Lisa; Dempster, Martin; McCorry, Noleen K; Donnelly, Michael; Johnston, Brian T

    2016-06-01

    This study provides a longitudinal assessment of distress in longer-term oesophageal cancer carers, while examining illness perception schema as a possible determinant of change in distress over time. Oesophageal cancer carers (n = 171), 48 months post-diagnosis, were assessed at baseline and 12 months later with the Illness Perception Questionnaire-Revised, Cancer Coping Questionnaire, Hospital Anxiety and Depression Scale and Concerns About Recurrence Scale. Findings report deterioration from normal to probable anxiety in 35.7% of carers and probable depression in 28.7% carers over time. Fear of recurrence remained stable. Changes in control, consequence and cause beliefs were identified as key determinants of a change in psychological morbidity. Illness beliefs appear to be valuable targets for psychological intervention to improve wellbeing among carers of people with oesophageal cancer. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

  9. Perceptions of the impact of health-care services provided to palliative care clients and their carers.

    PubMed

    Connell, Tanya; Fernandez, Ritin S; Griffiths, Rhonda; Tran, Duong; Agar, Meera; Harlum, Janeane; Langdon, Rachel

    2010-06-01

    A wide range of services are provided to palliative care clients to alleviate pain and improve their quality of life. The purpose of this study was to explore the perceptions of clients and their carers regarding palliative care services in New South Wales, Austalia. Ten patients and their carers (n = 7) were randomly selected from a sample of palliative care clients and were informed of the study and interviewed. Interview data were coded independently by three researchers and thematic analysis was undertaken. The themes identified were similar for both clients and carers and included: access to services; service provision; impact on way of life; usefulness of services; and staffing. An additional theme identified by clients was the burden of caregiving on carers. Knowledge of perceptions and concerns of client and carers is important to consider when planning palliative care services.

  10. Caring for a Child with Autism Spectrum Disorder and Parents’ Quality of Life: Application of the CarerQol

    PubMed Central

    Payakachat, Nalin; van Exel, Job; Kuhlthau, Karen; Kovacs, Erica; Pyne, Jeffrey; Tilford, J. Mick

    2014-01-01

    This study describes the impact of caregiving on parents of children with autism spectrum disorders (ASDs). Secondly, we investigate construct validation of the care-related quality of life instrument (CarerQol) measuring impact of caregiving. Primary caregivers of children with ASDs were included. Many parents experienced considerable problems combining daily activities with care, had financial problems or suffered from depressive mood. Validity tests showed that a higher impact of caring on the CarerQol was positively associated with higher subjective burden and lower family quality of life. Most of the associations between CarerQol scores and background characteristics confirmed previous research. The CarerQol validly measures the impact of caregiving for children with ASDs on caregivers in our sample. The CarerQol may therefore be useful for including parent outcomes in research on ASDs. PMID:24577786

  11. Family Carers and the Prevention of Heroin Overdose Deaths: Unmet Training Need and Overlooked Intervention Opportunity of Resuscitation Training and Supply of Naloxone

    ERIC Educational Resources Information Center

    Strang, John; Manning, Victoria; Mayet, Soraya; Titherington, Emily; Offor, Liz; Semmler, Claudia; Williams, Anna

    2008-01-01

    Aim: To assess (a) carers' experiences of witnessing overdose; (b) their training needs; and (c) their interest in receiving training in overdose management. Design: Postal questionnaire distributed through consenting participating local carer group coordinators in England. Sample: 147 carers attending local support groups for friends and families…

  12. Family Carers and the Prevention of Heroin Overdose Deaths: Unmet Training Need and Overlooked Intervention Opportunity of Resuscitation Training and Supply of Naloxone

    ERIC Educational Resources Information Center

    Strang, John; Manning, Victoria; Mayet, Soraya; Titherington, Emily; Offor, Liz; Semmler, Claudia; Williams, Anna

    2008-01-01

    Aim: To assess (a) carers' experiences of witnessing overdose; (b) their training needs; and (c) their interest in receiving training in overdose management. Design: Postal questionnaire distributed through consenting participating local carer group coordinators in England. Sample: 147 carers attending local support groups for friends and families…

  13. Changes in Attributions as a Consequence of Training for Challenging and Complex Behaviour for Carers of People with Learning Disabilities: A Systematic Review

    ERIC Educational Resources Information Center

    Williams, Sophie; Dagnan, Dave; Rodgers, Jacqui; McDowell, Kathryn

    2012-01-01

    Aim: This paper reviews the evidence for changes in carers' attributions regarding the behaviour of people with intellectual disabilities as a consequence of carer training in challenging and complex behaviour. Method: Papers were included in the review if they reported outcomes for carer training on the behaviour of people with intellectual…

  14. The impact of perceived stage of cancer on carers' anxiety and depression during the patients' final year of life.

    PubMed

    Burridge, Letitia H; Barnett, Adrian G; Clavarino, Alexandra M

    2009-06-01

    This paper explores the effects of perceived stage of cancer (PSOC) on carers' anxiety and depression during the patients' final year. A consecutive sample of patients and carers (N=98) were surveyed at regular intervals regarding PSOC, and anxiety and depression using the Hospital Anxiety and Depression Scale. Means were compared by gender using the Mann-Whitney U-test. The chi-square was used to analyse categorical data. Agreement between carers' and patients' PSOC was estimated using kappa statistics. Correlations between carers' PSOC and their anxiety and depression were calculated using the Spearman's rank correlation. Over time, an increasing proportion of carers reported that the cancer was advanced, culminating at 43% near death. Agreement regarding PSOC was fair (kappa=0.29-0.34) until near death (kappa=0.21). Carers' anxiety increased over the year; depression increased in the final 6 months. Females were more anxious (p=0.049, 6 months; p=0.009, 3 months) than males, and more depressed until 1 month to death. The proportion of carers reporting moderate-severe anxiety almost doubled over the year to 27%, with more females in this category at 6 months (p=0.05). Carers with moderate-severe depression increased from 6 to 15% over the year. Increased PSOC was weakly correlated with increased anxiety and depression. Carers' anxiety exceeded depression in severity during advanced cancer. Females generally experienced greater anxiety and depression. Carers were more realistic than patients regarding the ultimate outcome, which was reflected in their declining mental health, particularly near the end.

  15. Distress and psychological morbidity do not reduce over time in carers of patients with high-grade glioma.

    PubMed

    Halkett, Georgia K B; Lobb, Elizabeth A; Shaw, Thèrése; Sinclair, Michelle M; Miller, Lisa; Hovey, Elizabeth; Nowak, Anna K

    2017-03-01

    This study aimed to determine how carer distress and psychological morbidity change over time following a patient's diagnosis of high-grade glioma (HGG) and identify factors associated with changes in carers' psychological status. Carers of patients with HGG planned for chemoradiotherapy were recruited to this longitudinal cohort study. Carers completed questionnaires during patients' chemoradiotherapy and 3 and 6 months later including the following: the Distress Thermometer (DT); General Health Questionnaire-12 (GHQ-12); and three single-item questions about understanding of information presented by health professionals, confidence to care and preparedness to care for their relative/friend. Linear latent growth models were applied. The time 1 questionnaire was completed by 118 carers, of these 70 carers provided responses to the third time point. Carer distress and psychological morbidity were most prominent proximal to diagnosis, but remained high over time. Sixty-two percent of participants had moderate or high distress on the DT at time 1, 61% at time 2 and 58% at time 3. Scores on the DT and the GHQ-12 correlated significantly at all time points as did changes in scores over time (p < .001). However, for individual carers, the DT or GHQ-12 scores at one time point did not strongly predict scores at subsequent time points. In carers of patients with HGG, distress levels are consistently high and cannot be predicted at any time point. Carers should be monitored over time to identify evolving psychological morbidity. The single-item DT correlates highly with GHQ-12 scores and is a suitable tool for rapid repeated screening.

  16. Variances in family carers' quality of life based on selected relationship and caregiving indicators: A quantitative secondary analysis.

    PubMed

    Naef, Rahel; Hediger, Hannele; Imhof, Lorenz; Mahrer-Imhof, Romy

    2017-06-01

    To determine subgroups of family carers based on family relational and caregiving variables and to explore group differences in relation to selected carer outcomes. Family caregiving in later life holds a myriad of positive and negative outcomes for family members' well-being. However, factors that constitute family carers' experience and explain variances are less well understood. A secondary data analysis using cross-sectional data from a controlled randomised trial with community-dwelling people 80 years or older and their families. A total of 277 paired data sets of older persons and their family carers were included into the analysis. Data were collected via mailed questionnaires and a geriatric nursing assessment. A two-step cluster analysis was performed to determine subgroups. To discern group differences, appropriate tests for differences with Bonferroni correction were used. Two family carer groups were identified. The low-intensity caregiver group (57% of carers) reported high relationship quality and self-perceived ease of caregiving. In contrast, the high-intensity caregiver group (43% of carers) experienced significantly lower relationship quality, felt less prepared and appraised caregiving as more difficult, time intensive and burdensome. The latter cared for older, frailer and more dependent octogenarians and had significantly lower levels of quality of life and self-perceived health compared to the low-intensity caregiver group. A combination of family relational and caregiving variables differentiates those at risk for adverse outcomes. Family carers of frailer older people tend to experience higher strain, lower relationship quality and ability to work together as a family. Nurses should explicitly assess family carer needs, in particular when older persons are frail. Family carer support interventions should address caregiving preparedness, demand and burden, as well as concerns situated in the relationship. © 2016 John Wiley & Sons Ltd.

  17. Decision making for people living with dementia by their carers at the end of life: a rapid scoping review.

    PubMed

    Barker, Sue; Lynch, Mary; Hopkinson, Jane

    2017-09-02

    There are an increasing number of people living with dementia, as well as an expectation that care decisions are made collaboratively with those with the disease entering the end stage and their families. This has increased the burden on family carers. To explore the evidence on the decisional support needs of informal carers of people with end-stage dementia. A rapid scoping review was undertaken of peer-reviewed publications between 2000 and 2016, which included all health-care settings and the person's own home. Six databases were searched (CINAHL, MEDLINE, EMBASE, BNI, PSYCHINFO, Web of Science) and all papers meeting the inclusion criteria were read. A thematic analysis was undertaken of the selected papers using a pragmatic approach based on how the papers addressed the research question. Sixty papers were individually appraised, with 40 being included in the review. Of these papers, 11 were literature reviews and 29 were primary studies. The themes identified were: the influential factors in carer decision making, the scope of carer decision making, the conflicts/problems in carer decision making, the resources carers need to make decisions and the impact of carer decision making. To date, the emphasis in dementia care has been on living well with dementia, but realistically there is a need to plan for a 'good death' that includes the person and their carers. There is a need to support people with dementia and their carers to make an advance care plan, while the person with dementia can take part in the decision-making process. This proactive intervention is likely to reduce carer decision burden at end of life and facilitate achievement of death in the person's preferred place, which is usually the home or care home.

  18. The use of information and communication technologies to support working carers of older people - a qualitative secondary analysis.

    PubMed

    Andersson, Stefan; Magnusson, Lennart; Hanson, Elizabeth

    2016-03-01

    Family care support services have mainly focused on older spousal carers of older people and have largely overlooked working carers, whom combine paid work with informal/family care responsibilities. Recently, however, information and communication technology (ICT) systems have been identified as a potentially flexible way of supporting working carers. The aim of this study was to describe nursing and support staff's experiences of using ICT for information, e-learning and support of working carers of older people. The study employed a descriptive, qualitative approach conducting a qualitative secondary analysis of two original data sets. In total, seventeen professional staff members from two municipal family carer support units in Sweden that had implemented ICTs were interviewed using a semi-structured interview guide consisting of open-ended questions. Two data sets were merged using latent qualitative content analysis. Secondary analysis produced three subthemes and an overall theme, a virtual road as a carriageway for the support of working carers, consisting of both enabling and hindering aspects in family support. This theme provides access points in both directions and is based on caring instruments that enable nursing staff's support role. The staff's sustainability and ability to support is influenced by caring opportunities and barriers. The findings suggest the ICTs to be flexible structures that provided nursing staff with a means and method to support working carers of older people. To overcome barriers to its use, measures to optimise support for working carers and the older person are needed. The use of ICTs provides nurses with a means to offer support to working carers of older people and enables carers to be informed, to learn and to share their burdens with others when caring for an older family member. © 2015 John Wiley & Sons Ltd.

  19. Meeting the Cancer Information Needs of People with Learning Disabilities: Experiences of Paid Carers

    ERIC Educational Resources Information Center

    Jones, Amelia; Tuffrey-Wijne, Irene; Bernal, Jane; Butler, Gary; Hollins, Sheila

    2007-01-01

    This paper reports on one of the findings of a small study that aimed to explore how people with learning disabilities accessed and were supported to use a pictorial cancer information book. Five people with learning disabilities who were affected by cancer and their paid carers participated in the study. Support staff in the study were the people…

  20. The Really Useful Book of Learning & Earning for Young Adult Carers. Third Edition

    ERIC Educational Resources Information Center

    Learning and Work Institute, 2016

    2016-01-01

    "The Really Useful Book of Learning and Earning for Young Adult Carers" is aimed at young adults (aged 16-25) in England who are looking after somebody else. The first edition of the book was printed in 2011. This third edition is full of new and up-to-date useful information about looking after your health and wellbeing, job hunting,…

  1. Young Carers: Conventional or Exaggerated Levels of Involvement in Domestic and Caring Tasks?

    ERIC Educational Resources Information Center

    Warren, Janet

    2007-01-01

    Historically, research about young carers has focused on defining the tasks and responsibilities undertaken by children caring for ill or disabled family members and the impacts of such care, without reference to the domestic and caring work undertaken by children and young people in families where there are only non-disabled or well members. This…

  2. Teaching Intensive Interaction to Paid Carers: Using the "Communities of Practice" Model to Inform Training

    ERIC Educational Resources Information Center

    Rayner, Kelly; Bradley, Samantha; Johnson, Gemma; Mrozik, Jennifer H.; Appiah, Afua; Nagra, Maninder K.

    2016-01-01

    The engagement of people with learning disabilities in social communication is crucial to the development of relationships with others, a sense of social inclusion and self-worth. Intensive Interaction is an approach that can help carers develop their skills to engage people with severe and profound learning disabilities in personally relevant…

  3. The Professional Carers' Group: Supporting Group Work for Young Sexual Abusers.

    ERIC Educational Resources Information Center

    Griffin, Susanne; And Others

    1997-01-01

    Describes the context, format, and goals of the Professional Carers' Group, a professional network designed to support a centralized treatment project for young people who have sexually abused others. Ways that group-based work with potentially isolated local professionals may help a treatment program maintain a systemic perspective is discussed.…

  4. Self Stigma in People with Intellectual Disabilities and Courtesy Stigma in Family Carers: A Systematic Review

    ERIC Educational Resources Information Center

    Ali, Afia; Hassiotis, Angela; Strydom, Andre; King, Michael

    2012-01-01

    People with intellectual disability are one of the most stigmatised groups in society. Despite this, research in this area has been limited. This paper provides a review of studies examining self stigma in people with intellectual disability, and courtesy and affiliate stigma in family carers. An electronic search of studies published between 1990…

  5. Attendance, Achievement and Participation: Young Carers' Experiences of School in Australia

    ERIC Educational Resources Information Center

    Moore, Tim; McArthur, Morag; Morrow, Ros

    2009-01-01

    Schools play an important part in the lives of children and young people who have caring responsibilities for a family member with an illness, disability, alcohol or other drug problem or mental health condition but many of these "young carers" report difficulty in attending, achieving and participating in education. This qualitative…

  6. Collaborative Care Skills Training workshops: helping carers cope with eating disorders from the UK to Australia.

    PubMed

    Pépin, Geneviève; King, Ross

    2013-05-01

    The Collaborative Care Skills Training workshops, developed by Treasure and associates aim to improve the well-being, coping strategies and problem-solving skills of carers of someone with an eating disorder. Evidence has demonstrated the effectiveness of the workshops in the UK where it was developed. The aim of this pilot study was to examine whether conducting the workshops in different contexts by facilitators trained in its delivery could lead to similar impact. The workshops were conducted with 15 carers in VIC, Australia and delivered by experienced health professionals trained in its content and delivery. A non-experimental research design with repeated measures was implemented. Quantitative data were collected at pre-and post-intervention and 8 weeks after completion of the workshops. Participation led to significant reductions in carers' reported expressed emotion, dysfunctional coping, distress, burden and accommodation and enabling of the eating disorder behaviour, which were maintained at the 8-week follow-up. Results suggest the workshops are effective in reducing carer distress and burden as well as modifying unhelpful emotional interactional styles when caring for family members with an eating disorder. The content of the workshops and its delivery, once experienced facilitators have received training, are transferable to other contexts.

  7. The Caring Child: An Evaluative Case Study of the Cornwall Young Carers Project

    ERIC Educational Resources Information Center

    Butler, Allister H.; Astbury, Gaynor

    2005-01-01

    This paper reports on an evaluation of the Cornwall Young Carers project (jointly funded by social services and the Cornwall and Isles of Scilly Health Action Zone), conducted during the period 2000-2002. A diverse range of methodological approaches were adopted (comparative national statistics, local pilot study, monthly and quarterly data…

  8. The Experiences of Children with Learning Disabilities, Their Carers and Staff during a Hospital Admission

    ERIC Educational Resources Information Center

    Brown, Freddy Jackson; Guvenir, Jane

    2009-01-01

    Government policy is that people with learning disabilities should have their healthcare needs met by mainstream services. This study interviewed the carers of 13 children with learning disabilities admitted to hospital for a period longer than 24 h. Nursing staff and two children were also interviewed. Five themes were identified as having a…

  9. Understanding the impact of pulmonary arterial hypertension on patients' and carers' lives.

    PubMed

    Guillevin, Loïc; Armstrong, Iain; Aldrighetti, Rino; Howard, Luke S; Ryftenius, Henrik; Fischer, Aryeh; Lombardi, Sandra; Studer, Sean; Ferrari, Pisana

    2013-12-01

    Pulmonary arterial hypertension (PAH) is a rare, debilitating and rapidly progressive disease. Although there have been important medical advances in PAH management, the search for a cure continues. Despite an increased understanding of the disease, data on the wider effect of PAH on patients and carers, beyond the clinical symptoms, are still limited. In order to explore this, a large-scale international survey investigated four key areas affected by PAH (physical and practical, emotional, social, and information needs) and provides new insight into patients' and carers' experiences of living with the disease. The results from the survey highlight not only the limited ability of patients to carry out everyday tasks, but also the financial impact and social isolation experienced by both patients and carers. The study confirmed that a decline in a patient's World Health Organization functional class, which indicates an increase in clinical severity of the disease, is associated with greater limitations. Results from the survey demonstrate the need for multidisciplinary PAH management and a comprehensive standard of care to assess and improve all aspects of well-being for both patients and carers. In addition, they underline the need for updated PAH guidelines that address these needs.

  10. End-of-Life Care for People with Intellectual Disabilities: Paid Carer Perspectives

    ERIC Educational Resources Information Center

    Ryan, Karen; Guerin, Suzanne; Dodd, Philip; McEvoy, John

    2011-01-01

    Background: Little is known of paid carers' perspectives when caring for people with intellectual disabilities at the end-of-life. Materials and methods: Sixty four individuals from intellectual disability services took part in 12 focus groups. Interviews were analysed using framework analysis. Results: Participants wanted to provide palliative…

  11. Determining Research Questions on Health Risks by People with Learning Disabilities, Carers and Care-Workers

    ERIC Educational Resources Information Center

    Young, Anita F.; Chesson, Rosemary A.

    2008-01-01

    Here we describe the process by which research questions were developed for reducing health risks for people with learning disabilities. A participatory approach was used to give service users and carers a clear voice in "deciding" questions, thereby setting the research agenda. Audio-taped interviews and focus groups were used. Forty people (20…

  12. The management of depressed elderly care recipients: family perspectives on the skills of professional carers.

    PubMed

    Mellor, David; Davison, Tanya; McCabe, Marita; George, Kuruvilla

    2008-01-01

    Recent studies have identified high levels of depression among older people, both those in their own homes and those in residential care. With the world's population ageing, it is timely for health service providers to consider how the escalating population of depressed elderly people will be managed. Although treating general practitioners may be the health professionals most expected to detect, treat, and monitor depression among the elderly, professional carers are well placed to assist in the detection and monitoring of the disorder. This study conducted individual interviews with 15 family members of depressed aged-care recipients to determine their perceptions of the skills and knowledge of depression of professional carers. Family members reported that carers are more likely to avoid than engage with their clients about depressive symptomatology and do not communicate their concerns with managers or general practitioners (GPs). Family members believed that, in general, professional carers were undertrained in these areas. The implications of these findings for health service planning and staff training are discussed.

  13. Tracking an Elusive Population: Family Carers of Older Adults with Intellectual Disabilities in Romandy (Switzerland)

    ERIC Educational Resources Information Center

    Jecker-Parvex, Maurice; Breitenbach, Nancy

    2012-01-01

    Despite a long-standing tradition of institutional placement in Switzerland, many older adults with intellectual disabilities continue to be supported by aging parents and siblings. For various reasons, these carers and the adults concerned have been overlooked up to now. To find out how many such families are providing housing and care of this…

  14. Juxtapositioning Geriatrics and Art: The Essence of Caring, Carer, and Cared-For in Films

    ERIC Educational Resources Information Center

    de Guzman, Allan B.; Carungcong, Bobbie Jo H.; Castillo, Jasper Q.; Castillo, Joyce Anne A.; Castro, Jenelyn S.

    2009-01-01

    The need to revolutionize geriatric nursing is dawning. However, there is a negative view regarding this nursing field. The dearth of literature on the use of theatrical films to surface universal realities in a care-driven profession has led to this attempt of bringing to reality the essences of caring, carer, and cared-for and their interactions…

  15. The Developmental Trajectory of Borderline Personality Disorder and Peer Victimisation: Australian Family Carers' Perspectives

    ERIC Educational Resources Information Center

    Wlodarczyk, Julian; Lawn, Sharon

    2017-01-01

    Victimisation is a traumatic experience linked to development of Borderline personality disorder (BPD). However, there is limited research investigating the developmental journey prior to BPD diagnosis. School environments offer an opportunity for BPD prevention and early intervention. A survey with 19 Australian family carers of people with BPD…

  16. Supportive care needs of people with brain tumours and their carers.

    PubMed

    Janda, Monika; Eakin, Elizabeth G; Bailey, Lucy; Walker, David; Troy, Kate

    2006-11-01

    The diagnosis and treatment of a brain tumour may result in long-term changes in a patient's functional and social abilities and/or in a greatly reduced life span. A qualitative investigation was conducted to examine the supportive care needs of patients with brain tumour and their carers. Overall, 18 patients and 18 carers participated in focus groups or telephone interviews, following a structured interview guide to elicit supportive care services of importance to these patients and carers. Six major themes were identified using the framework analysis method, including needs for information and coping with uncertainty, practical support, support to return to pretreatment responsibilities or prepare for long-term care, support to deal with social isolation and organize respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy. Five recommendations to improve service delivery include: assignment of a dedicated member of the care team or case manager; proactive dissemination of information, education and psychosocial support; access to objective assessment of neuropsychological functioning; facilitating easier access to welfare payments; and services facilitating communication about difficult illness-related topics. Provision of services along these recommendations could improve supportive care of brain tumour patients and their carers.

  17. Adults with Learning Disabilities Experiences of Using Community Dental Services: Service User and Carer Perspectives

    ERIC Educational Resources Information Center

    Lees, Carolyn; Poole, Helen; Brennan, Michelle; Irvine, Fiona

    2017-01-01

    Background: The government alongside other health and social care organisation have identified the need to improve the care provided for people with learning disabilities. Materials and Methods: This service evaluation aimed to explore the experiences of people with learning disabilities and their carers who accessed community dental services…

  18. The Caring Child: An Evaluative Case Study of the Cornwall Young Carers Project

    ERIC Educational Resources Information Center

    Butler, Allister H.; Astbury, Gaynor

    2005-01-01

    This paper reports on an evaluation of the Cornwall Young Carers project (jointly funded by social services and the Cornwall and Isles of Scilly Health Action Zone), conducted during the period 2000-2002. A diverse range of methodological approaches were adopted (comparative national statistics, local pilot study, monthly and quarterly data…

  19. Menopause Experiences and Attitudes in Women with Intellectual Disability and in Their Family Carers

    ERIC Educational Resources Information Center

    Chou, Yueh-Ching; Lu, Zxy-Yann Jane; Pu, Cheng-Yun

    2013-01-01

    Background: Little is known about how middle-aged and older women with intellectual disability (ID) cope with life transitions such as perimenopause and postmenopause. Method: A mixed methods approach was employed to explore the attitudes toward and experiences of menopause among women with ID and their family carers in one city in Taiwan.…

  20. Factors influencing the person-carer relationship in people with anxiety and dementia.

    PubMed

    Spector, Aimee; Orrell, Martin; Charlesworth, Georgina; Marston, Louise

    2016-10-01

    The relationship between people with dementia and their carers is complex and has a significant impact on the dementia experience. The aim of this current study was to determine (1) which factors are associated with the quality of the patient-carer relationship and (2) whether these differ between the two perspectives. Participants (people with dementia and their carers) were taken from a randomised controlled trial of cognitive behaviour therapy for anxiety in dementia. The quality of the relationship from both perspectives, anxiety and depression in both parties; and the quality of life, neuropsychiatric symptoms and cognitive functioning in people with dementia was examined at three time points (baseline, 15 weeks and 6 months). There were 127 observations from 50 dyads (100 individuals) across the three time points. Factors significantly related to quality of relationship from the person with dementia's perspective were their own aggression, agitation, irritability, depression, anxiety and quality of life. Factors significantly associated with quality of relationship from the carer's perspective were their own anxiety and depression, and the depression, irritability, behavioural disturbances and quality of life of the person with dementia. People with dementia generally rated the quality of relationship higher, irrespective of level of dementia, depression or anxiety. This study is novel in that it provides a valuable insight into the impact of mental health on relationship quality for both members of the dyad. The findings emphasise the importance of providing interventions which target mood for both parties, and behavioural problems for people with dementia.

  1. Self Stigma in People with Intellectual Disabilities and Courtesy Stigma in Family Carers: A Systematic Review

    ERIC Educational Resources Information Center

    Ali, Afia; Hassiotis, Angela; Strydom, Andre; King, Michael

    2012-01-01

    People with intellectual disability are one of the most stigmatised groups in society. Despite this, research in this area has been limited. This paper provides a review of studies examining self stigma in people with intellectual disability, and courtesy and affiliate stigma in family carers. An electronic search of studies published between 1990…

  2. Teaching Intensive Interaction to Paid Carers: Using the "Communities of Practice" Model to Inform Training

    ERIC Educational Resources Information Center

    Rayner, Kelly; Bradley, Samantha; Johnson, Gemma; Mrozik, Jennifer H.; Appiah, Afua; Nagra, Maninder K.

    2016-01-01

    The engagement of people with learning disabilities in social communication is crucial to the development of relationships with others, a sense of social inclusion and self-worth. Intensive Interaction is an approach that can help carers develop their skills to engage people with severe and profound learning disabilities in personally relevant…

  3. An Exploration of Issues around Menstruation for Women with Down Syndrome and Their Carers

    ERIC Educational Resources Information Center

    Mason, Linda; Cunningham, Cliff

    2008-01-01

    Background: There is little research on issues related to menstruation for women with Down syndrome, yet they may experience menstruation in a qualitatively different way from normal women, which impacts on their quality of life and that of their families and carers. The aim of this qualitative study was to explore issues with the women and/or…

  4. 'Am I damaging my own family?': Relational changes between foster carers and their birth children.

    PubMed

    Thompson, Hayley; McPherson, Susan; Marsland, Louise

    2016-01-01

    Foster placements are more likely to break down where the foster carers already have birth children. Studies that explore the impact of fostering on foster carers and their birth children have suggested that relational changes occur, but these changes have not been examined in depth. This study aimed to explore the impact of fostering on parent-child relationships within foster families. Nine foster carers (including three couples) were interviewed separately, and the data were analysed using constructivist grounded theory methods. Analysis indicated that birth children may attribute particular importance to their position in the family (e.g. oldest child, youngest child) and that this is a key element of the way in which they relate to their parents. Emotional security and parent-child relationships can therefore be strained by a foster placement not taking this into account. Foster children also introduce significant competition for parental resources, putting a strain on relationships. Foster carers seem to prioritise, consciously or not, the preservation of relationships within the biological family. Reflecting on relationships and making changes to maximise potential improvements in relationships can lead to positive outcomes, and this can have an impact on whether families continue fostering or not. © The Author(s) 2014.

  5. Gender Differences in Self-Silencing and Psychological Distress in Informal Cancer Carers

    ERIC Educational Resources Information Center

    Ussher, Jane M.; Perz, Janette

    2010-01-01

    This study examined gender differences in self-silencing, the relationship between self-silencing and psychological distress, and reasons for self-silencing in informal cancer carers (329 women, 155 men), using a mixed-method design. Men reported greater self-silencing than women on the Silencing the Self Scale; however, women reported higher…

  6. Medication issues experienced by patients and carers after discharge from the intensive care unit.

    PubMed

    Eijsbroek, Heleen; Howell, David C J; Smith, Felicity; Shulman, Rob

    2013-02-01

    Medication-related problems (MRPs) frequently occur at the interfaces of care settings. We examined this further because little has been published about MRPs experienced by patients/carers after discharge from the intensive care unit (ICU). Medication history data were collected before, during, and after ICU admission and by face-to-face semistructured interviews with 21 patients and 13 carers attending the ICU Follow-up Clinic (FC) of our 35-bed adult ICU. A total of 122 drugs were prescribed regularly before ICU admission, 168 on ICU discharge, 132 at hospital discharge, and 128 at the FC. Medication-related problems were identified with hypnotics/anxiolytics, antidepressants, proton pump inhibitors, and analgesics. Good follow-up was observed in all 4 cases where the antidysrhythmic agent amiodarone was initiated on ICU. Patients/carers described 20 cases of difficulty in obtaining appropriate and timely supplies and 19 of insufficient information. These results show that our incidence of MRPs after ICU discharge was encouragingly infrequent, in which we attribute it to targeted medicine reconciliation and the availability of our FC. However, MRPs were perceived to stem from inadequate communication at the interfaces of care and the lack of opportunity for patients/carers to obtain relevant information. We recommend that FC should focus on MRPs during their consultation and that further research in this area should be performed to examine our observations further. Copyright © 2013 Elsevier Inc. All rights reserved.

  7. An Exploration of Issues around Menstruation for Women with Down Syndrome and Their Carers

    ERIC Educational Resources Information Center

    Mason, Linda; Cunningham, Cliff

    2008-01-01

    Background: There is little research on issues related to menstruation for women with Down syndrome, yet they may experience menstruation in a qualitatively different way from normal women, which impacts on their quality of life and that of their families and carers. The aim of this qualitative study was to explore issues with the women and/or…

  8. Menopause Experiences and Attitudes in Women with Intellectual Disability and in Their Family Carers

    ERIC Educational Resources Information Center

    Chou, Yueh-Ching; Lu, Zxy-Yann Jane; Pu, Cheng-Yun

    2013-01-01

    Background: Little is known about how middle-aged and older women with intellectual disability (ID) cope with life transitions such as perimenopause and postmenopause. Method: A mixed methods approach was employed to explore the attitudes toward and experiences of menopause among women with ID and their family carers in one city in Taiwan.…

  9. Gender Differences in Self-Silencing and Psychological Distress in Informal Cancer Carers

    ERIC Educational Resources Information Center

    Ussher, Jane M.; Perz, Janette

    2010-01-01

    This study examined gender differences in self-silencing, the relationship between self-silencing and psychological distress, and reasons for self-silencing in informal cancer carers (329 women, 155 men), using a mixed-method design. Men reported greater self-silencing than women on the Silencing the Self Scale; however, women reported higher…

  10. Paid- and family-carers' views on supporting women with intellectual disability through breast screening.

    PubMed

    Willis, D S; Kilbride, L; Horsburgh, D; Kennedy, C M

    2015-07-01

    The cancer needs of people with intellectual disabilities are increasingly being debated. This paper explores the views and experiences of paid- and family-carers when supporting women with intellectual disabilities through breast screening. An ethnographic approach was drawn on and purposive sampling methods were employed. One-to-one semi-structured interviews with 13 carers (10 paid-carers, three family-carers) were undertaken and supported by periods of focused observation on behaviour related to breast awareness and breast screening. Findings indicated that most women with intellectual disabilities needed some support but the quality and quantity of support depended upon both the woman's level of intellectual disability and who was supporting them. In terms of breast screening, the findings suggested that the women were potentially being let down at all the different stages of the breast screening process, from the arrival of the invitation letter to the experience of having a mammogram. The conclusion drawn was that there was evidence of equality of service provision but inequality of service delivery and uptake. © 2014 John Wiley & Sons Ltd.

  11. Hearing Parents' and Carers' Voices: Experiences of Accessing Quality Long Day Care in Northern Regional Australia

    ERIC Educational Resources Information Center

    Harris, Nonie; Tinning, Beth

    2012-01-01

    This article explores parents' and carers' experiences of accessing quality long day care in northern regional Australia. The data was gathered in 2009, after the collapse of ABC Developmental Learning Centres (herein referred to as ABC Learning) and before the implementation of the "National Quality Framework," and provides a snapshot…

  12. Shared decision-making in dementia: A review of patient and family carer involvement.

    PubMed

    Miller, Lyndsey M; Whitlatch, Carol J; Lyons, Karen S

    2016-09-01

    This paper reviews empirical findings concerning the decision-making process of persons with dementia and their family carers, with a particular focus on the extent and determinants of involvement of persons with dementia in the decision-making process. To be included in this review, studies needed to be published in peer-reviewed journals between 1999 and 2014, report empirical data from participants with dementia and/or their family carers, and pertain to the involvement of persons with dementia and their family carers in decisions about everyday care, medical care and treatment, or long-term care. A total of 36 studies were included. Results indicated that not all persons with dementia are excluded from participating in the decision-making process, but there is a broad spectrum of what constitutes shared decision-making in dementia. Studies concerning the determinants of shared decision-making mostly focused on non-modifiable factors. Future research is needed to better promote shared decision-making among persons with dementia and their family carers.

  13. The role of district nursing: perspectives of cancer patients and their carers before and after hospital discharge.

    PubMed

    Luker, K A; Wilson, K; Pateman, B; Beaver, K

    2003-12-01

    The role of the district nurse (DN) is difficult to define. Knowledge about the perspectives of patients with cancer, and their informal carers, on the roles of DNs and community services is lacking. The aim of this study is to identify the roles of DNs and community services as perceived by patients with cancer and their carers before and after hospital discharge. Seventy-one pre- and post-discharge conversational interviews were conducted with cancer patients and carers, and analysed thematically. Some interviewees lacked knowledge about services, were confused about differential roles and/or held stereotypical views. Some failed to disclose needs to services, received insufficient support or experienced unnecessary and inconvenient visits. Patients with few or no physical care needs were surprised to receive DN visits. Those receiving personal care from agency carers expressed dissatisfaction. Cancer patients and carers may benefit from post-discharge/ongoing assessment by DNs. However, effectiveness could be inhibited by limited disclosure caused by confusion, stereotyping, negative experiences and ideas that other patients have greater needs. Information might diminish these factors but, first, services need to clarify their roles. Organization and delivery of personal care services varies locally and DNs provide personal care during terminal illness. Community services should perform intra- and interservice clarification before publicizing differential roles to cancer patients and carers. This might facilitate disclosure of need to DNs. Patient and carer needs for information on service roles, and patients' preferred roles in self-care are under-researched.

  14. A study of the effectiveness of MP3 players to support family carers of people living with dementia at home.

    PubMed

    Lewis, Virginia; Bauer, Michael; Winbolt, Margaret; Chenco, Carol; Hanley, Francine

    2015-03-01

    Music can be therapeutic to people with dementia; however, little is known about its effect on the family carers. This project aimed to (1) assess the effects of MP3 player use by a person with dementia on caregivers' mental health and wellbeing, including their self-care and health-promoting behavior and (2) determine whether MP3 player use increases caregivers' self-reported capacity to cope with their role. A pre-post quantitative and qualitative design was used. Carers completed a survey prior to commencing and four weeks after using the player. The survey included validated measures to assess the level of stress and coping among carers. Carers also kept a diary of the way they used the MP3 player. Half of the carers were interviewed about their experiences at the end of the study. Of 59 people who started using the MP3 player, 51 carers completed the four-week study period and surveys. Use of the MP3 player significantly decreased psychological distress, significantly improved the mental health and wellbeing of carers, significantly increased caregiver self-efficacy to manage symptoms of dementia, and was reported to provide valued respite from the high level of vigilance required for caring for a person with dementia. An MP3 player loaded with music can be a low cost and relatively simple and effective additional strategy to support families caring for people with dementia in the community.

  15. Double deprivation: a phenomenological study into the experience of being a carer during a mental health crisis.

    PubMed

    Albert, Rikke; Simpson, Alan

    2015-12-01

    To explore carers' experience of caring during a mental health crisis. Community mental health care including crisis care relies increasingly on carers. The relationship between carers and professionals is at times fraught due to issues of what constitutes a crisis, confidentiality and a perception of lack of empathy. The caring experience can lead carers to feel isolated and neglected. A qualitative study with a phenomenological approach. Eight carers participated and were interviewed individually using a semi-structured approach. Analysis used the Interpretive Phenomenological Analysis method including transcribing of interviews, initial noting, searching for connections and patterns across the transcripts and cases. The themes were checked with the participants for their views on the emerging themes. The data were collected from November 2011-May 2012. Carers experienced 'double deprivation' by not receiving support from professionals and protecting their social network from the trauma of the crisis. The caring in crisis invoked complex feelings of guilt and loyalty which made discussing aggression difficult. Caring was described as a terrifying experience not just because of the aggression but also because of the perception of abandonment by professionals. The experience was an overwhelmingly negative one with a wish for acknowledgement of the crisis and support from mental health services. For most of the participants the caring during crisis was traumatic which left the carer feeling isolated and unsupported. The study should be used to help educate professionals on the complexities of caring during a crisis. © 2015 John Wiley & Sons Ltd.

  16. Being in a fragmented and isolated world: interviews with carers working with a person with a severe autistic disorder.

    PubMed

    Hellzen, Ove; Asplund, Kenneth

    2002-02-01

    To illuminate the meaning of being a carer for a person with a severe autistic disorder. Carers working with people with severe autism are occasionally exposed to residents' self-injurious behaviours and violent actions and at time residents appear resistant to all forms of treatment. A qualitative case study was conducted. Six Swedish carers enrolled nurses (ENs), working on a special ward in a nursing home were interviewed about their lived experiences when caring for an individual with a severe autistic disorder. Narrative interviews were conducted and interpreted using a phenomenological-hermeneutic method inspired by Paul Ricoeur. Two themes were formulated which describe the carers' reality and their dream of an ideal. This ideal described carers' experiences of being trapped in a segmented and isolated care reality and their longing to achieve a sense of wholeness. The findings were interpreted and reflected on in the light of a framework inspired by the German philosopher Karl Jaspers in order to achieve a deeper understanding of the text. In their desperation, the carers used their empirical knowledge based on scientific knowledge, which could be understood as a substitute for their vision of a consolating wholeness. This paper shows that searching for a substitute to consolation seems to be an important aspect of the meaning of being a carer for a person with a severe autistic disorder.

  17. Does physical activity reduce burden in carers of people with dementia? A literature review.

    PubMed

    Orgeta, Vasiliki; Miranda-Castillo, Claudia

    2014-08-01

    Physical exercise has been associated with a range of positive outcomes including improvements in psychological well-being. The aim of the present study was to review current evidence on the effects of physical activity interventions for carers of people with dementia. Systematic review. We searched electronic databases and key articles of studies that have evaluated the effectiveness of physical activity interventions in improving psychological well-being in carers of people with dementia. Relevant papers were scored according to established criteria set by the Cochrane Review Group. Selection criteria for studies were a randomized controlled trial (RCT) design, and comparing physical activity with a control group receiving no specific physical activity intervention. Two reviewers worked independently to select trials, extract data, and assess risk of bias. A total of four RCTs met the inclusion criteria. Studies evaluated home-based supervised physical activity of low to moderate intensity, which included either aerobic exercise, or endurance training.Pooled data showed that physical activity reduced subjective caregiver burden in carers, standardized mean difference -0.43; 95% confidence interval (CI) -0.81 to -0.04, in comparison to a control group of usual care. There is evidence from two RCTs that physical activity reduces subjective caregiver burden for carers of people with dementia. Although statistically significant, the observed benefits should be interpreted with caution as the studies conducted so far have limitations. Further high-quality trials are needed for evaluating the effectiveness of physical activity in improving psychological well-being in carers of people with dementia.

  18. Experiences of carers managing childhood eczema and their views on its treatment: a qualitative study

    PubMed Central

    Santer, Miriam; Burgess, Hana; Yardley, Lucy; Ersser, Steven; Lewis-Jones, Sue; Muller, Ingrid; Hugh, Catherine; Little, Paul

    2012-01-01

    Background Childhood eczema causes significant impact on quality of life for some families, yet non-concordance with treatment is common. Aim To explore parents' and carers' views of childhood eczema and its treatment. Design and setting Qualitative interview study in primary care in the south of England. Method Carers of children aged ≤5 years with a recorded diagnosis of eczema, who reported that eczema was still a problem, were invited to participate. Thirty-one parents were interviewed from 28 families. Results Many parents expressed frustration with both medical care and prescribed treatments. They felt their child's suffering was not ‘taken seriously’, and experienced messages about a ‘trial and error’ prescribing approach and assurance that their child would ‘grow out of it’ as a further ‘fobbing off’, or dismissal. Many carers were ambivalent about eczema treatments, mainly topical corticosteroids but also emollients. Dietary exclusions as a potential cure were of interest to most families, although they perceived healthcare professionals as uninterested in this. Families varied in the extent to which they felt able to manage eczema and the length of time taken to gain control. In some instances, this was linked to not understanding advice or receiving conflicting advice from different healthcare providers. Conclusion Poor concordance with treatments seems unsurprising in the presence of such dissonance between carers' and healthcare providers' agendas. Acknowledging the impact of the condition, greater attention to how key messages are delivered and addressing carers' treatment beliefs are likely to improve engagement with effective self-care. PMID:22520913

  19. Service users' and carers' views on research towards stratified medicine in psychiatry: a qualitative study.

    PubMed

    Rose, Diana; Papoulias, Constantina; MacCabe, James; Walke, Jennifer

    2015-09-28

    Approximately 30% of people with a diagnosis of schizophrenia receive little to no benefit from current medications. There is therefore an urgent need to develop more precisely targeted and effective treatments. Identifying biomarkers to predict response to treatment and stratify patients into groups may be a way forward. However, we know little about service users' and carers' attitudes regarding such a 'stratified medicine' approach for psychiatry-nor how this might impact on their willingness to participate in stratified medicine research. This paper presents psychiatric service user and carer views on research to develop stratified medicine for treatment resistant schizophrenia, and explores the conditions under which people would be prepared to participate in a trial and their willingness to undergo various research procedures. Participatory methods were used throughout. A consultation was undertaken with an existing Service User Advisory Group (SUAG) in order to establish a topic guide. Service user focus groups were then conducted by service user researchers in Manchester, London and Edinburgh (totalling 18 people) and one carer focus group in London, attended by eight participants. Focus groups were digitally recorded, the transcripts analysed in NVivo 10 using a simple thematic analysis, and quotations de-identified to protect participants. The data reflected enthusiasm for the potential of stratified medicine and both service users and carers demonstrated a strong desire to help others. However, some service users and carers feared poor performance on neuropsychological assessments, and reported that certain medication side effects might discourage them from undergoing procedures demanding immobility and concentration. Concerns were voiced that stratified medicine could encourage an overemphasis on biological symptoms, at the expense of psychosocial factors and subjective experience. People with experience of treatment resistant schizophrenia would

  20. Carers' views of topical corticosteroid use in childhood eczema: a qualitative study of online discussion forums.

    PubMed

    Teasdale, E J; Muller, I; Santer, M

    2017-06-01

    Childhood eczema is very common and can have substantial impact on quality of life. One of the main treatments is topical corticosteroids, but these are often underused by parents and carers for reasons that include concerns about safety. To explore understandings and concerns about topical corticosteroids among parents and carers of children with eczema who had posted messages in online forums. A qualitative study of messages and their resultant discussions about topical corticosteroids for childhood eczema posted by parents and carers on two U.K.-based discussion forums. Ninety-five forum users involved in 27 discussions relating to topical corticosteroid use in childhood eczema were identified dating from 2003 to 2015. Analysis of discussions highlighted three themes: (i) diverse beliefs about the use of topical corticosteroids; (ii) uncertainty and confusion about using and applying topical corticosteroids; and (iii) seeking to resolve conflicting advice received offline and advice on navigating health services. People expressed a general sense of cautiousness about topical corticosteroids, wide-ranging concerns and considerable confusion, for instance about potency or safe duration of use. They sought advice from other forum users who they perceived as having experiential expertise. Some posts attempted to reassure that topical corticosteroids were safe if used correctly, but overall the discussions seemed likely to amplify existing concerns. Given the prevalence of concerns and uncertainties about topical corticosteroids, signposting parents and carers of children with eczema towards detailed, credible information about how to use topical corticosteroids safely would be beneficial. In the absence of such information, parents and carers are likely to turn to online discussion forums where, although much useful support and advice can be found, the credibility of advice cannot be assured. © 2016 British Association of Dermatologists.

  1. Third-party disability in carers of people with dysphagia following non-surgical management for head and neck cancer.

    PubMed

    Nund, Rebecca L; Scarinci, Nerina A; Cartmill, Bena; Ward, Elizabeth C; Kuipers, Pim; Porceddu, Sandro V

    2016-01-01

    Third-party disability pertains to the consequences of a person's impairment which impacts on the functioning and ability of their family members or significant others. With the emergence of research demonstrating the pervasive effects of dysphagia following head and neck cancer (HNC) on the carer, the aim of this study was to identify the International Classification of Functioning, Disability and Health (ICF) domains and categories that describe the third-party disability of carers of people with dysphagia following HNC. Twelve carers of people with dysphagia following HNC participated in individual semi-structured, in-depth interviews. Categories and sub-categories identified from the qualitative analysis were mapped to the ICF using the established linking rules. The majority of the categories and sub-categories from the qualitative analysis were successfully linked to the ICF with most linking to the Activities and Participation component. A number of contextual factors were also identified as impacting on the functioning of carers. The ICF can be successfully used to describe the third-party disability in carers of people with dysphagia following HNC management. This information could be used by clinicians, researchers and policy makers to help establish evidence-based guidelines that include carers in the assessment and management of dysphagia associated with HNC. Clinical levels of distress and reduced quality of life have been associated with caring for a person with dysphagia following head and neck cancer. The flow-on effects of dysphagia experienced by a carer or close family member can be understood as a third-party disability, which impacts on their functioning, activities and participation in the context of the environment and personal factors. Using the ICF to describe the indirect effects of dysphagia on the carer may help to guide the assessment and support of this population, and advocate for the inclusion of the concerns of the carer in

  2. Evaluation of a Web-Based Training Program for Professional Carers Working With People With Learning Disabilities and Challenging Behavior: A Pilot Study with SSED-Design.

    PubMed

    Antonsson, Helena; Graneheim, Ulla Hällgren; Isaksson, Ulf; Åström, Sture; Lundström, Mats O

    2016-10-01

    The interaction between people with intellectual disabilities and professional carers is often influenced by communicative difficulties contributing challenging behaviours. The aims of this study were to evaluate to a web-based training program aimed at improving carers' abilities to interact with people with learning disabilities who exhibit challenging behaviours and to explore carers' experiences of participating in such a program. A single-subject experimental design and mixed methods were used to integrate qualitative and quantitative data. Triangulation of questionnaires, interviews with carers, and assessments of one woman's behaviour was performed. The participants were professional carers aged 20 to 55 years. The web-based training program increased carers' abilities to handle challenging behaviours and decreased challenging behaviours in daily care. The program improved the opportunities to offer training to carers who work in community-based accommodations with limited time to receive training.

  3. Public interest and private concern: the role of family carers for people suffering mental illness in the twenty first century.

    PubMed

    Parker, Robert; Leggatt, Margaret; Crowe, Jim

    2010-04-01

    This paper looks to examine the emerging role of carers as essential components in the management of individuals affected by severe mental illness in the context of modern legal and health policy environments. Cultural and legal concepts of confidentiality within the doctor-patient relationship are complex. Increasingly, evidence is recognizing the essential role of carers in the quality management of individuals affected by severe mental illness and this emphasis is being further supported by innovative health policy and legislation. A public health definition for the role of carers may be a more appropriate way to consider their role in mental health management strategies.

  4. Perceptions of unmet needs for community social care services in England. A comparison of working carers and the people they care for.

    PubMed

    Brimblecombe, Nicola; Pickard, Linda; King, Derek; Knapp, Martin

    2017-03-01

    Previous UK research has found expressed unmet need for services by unpaid working carers and among disabled and older people. There are, however, suggestions from research that views on unmet needs for services differ between carers and care-recipients. Working carers in the UK say that the care-recipient is sometimes reluctant to accept services and the few international comparative dyad studies that have been carried out find that carers perceive higher unmet need than care-recipients. Recent policy discussions in England have also recognised that there may be differences of opinion. We collected data in 2013 from working carer/care-recipient dyads in England about perceived need for services for the care-recipient, disability, unpaid care hour provision and individual and socio-demographic characteristics. We find that care-recipients as well as their carers perceive high unmet need for services, although carers perceive higher unmet need. For carers, unmet need is associated with the disability of the carer-recipient and being the daughter or son of the care-recipient; for care-recipients it is associated with unpaid care hours, carers' employment status and carers' health. The majority of dyads agree on need for services, and agreement is higher when the working carer provides care for 10 hours or more hours a week. Services for care-recipients may enable working carers to remain in employment so agreement on needs for services supports the implementation of legislation, policy and practice that has a duty to, or aims to, support carer's employment.

  5. Reliability training

    NASA Technical Reports Server (NTRS)

    Lalli, Vincent R. (Editor); Malec, Henry A. (Editor); Dillard, Richard B.; Wong, Kam L.; Barber, Frank J.; Barina, Frank J.

    1992-01-01

    Discussed here is failure physics, the study of how products, hardware, software, and systems fail and what can be done about it. The intent is to impart useful information, to extend the limits of production capability, and to assist in achieving low cost reliable products. A review of reliability for the years 1940 to 2000 is given. Next, a review of mathematics is given as well as a description of what elements contribute to product failures. Basic reliability theory and the disciplines that allow us to control and eliminate failures are elucidated.

  6. Consumer and carer perspectives in the development of a mental health research, treatment and teaching facility: A thematic analysis.

    PubMed

    Katsikitis, M; Lane, B R; Ozols, I; Statham, D

    2017-09-01

    WHAT IS KNOWN ON THE SUBJECT?: Around the world, recovery has become a focus in mental health policy. The participation of people accessing mental health services (consumers) and carers of such individuals in decision-making related to services forms part of this recovery orientation and studies suggest positive outcomes following such participation. However, little is known about consumer and carer desires at the earliest stages of development of new services. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Consumers and carers desire changes to how mental health services are provided. Many factors affect consumer and carer experiences, including language use, physical design of spaces, accessibility, consideration of individual needs, practical help and how well care is continued from hospital to community settings. Carers may feel sidelined in treatment and be distressed as a result. They wish to be respected and involved in recovery. Consumers and carers wish for focus on broader health, with care taken to address physical health, psychological needs, social needs and treatment of the whole person rather than just an illness. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Consumers and carers desire partnership with professionals in recovery. Tokenistic participation should be avoided. Flexibility in how services are provided and less formality may help engage consumers and carers. Specifically, professionals may help by linking consumers and carers to services that address practical needs. Professionals should communicate with carers to draw on their expertise about the individual accessing the mental health service and help carers understand how they can assist the individual's recovery. Introduction Recovery-oriented mental health policies recognize consumer and carer participation in service decision-making as essential, but little is known about the views of these individuals in the earliest stages of service development. Aim This study sought consumer and carer

  7. Person Reliability

    ERIC Educational Resources Information Center

    Lumsden, James

    1977-01-01

    Person changes can be of three kinds: developmental trends, swells, and tremors. Person unreliability in the tremor sense (momentary fluctuations) can be estimated from person characteristic curves. Average person reliability for groups can be compared from item characteristic curves. (Author)

  8. Factors influencing practitioner adoption of carer-led assessment in palliative homecare: A qualitative study of the use of the Carer Support Needs Assessment Tool (CSNAT)

    PubMed Central

    Ewing, Gail; Grande, Gunn

    2017-01-01

    Introduction Informal caregivers play a pivotal role in supporting patients approaching the end of life. The Carer Support Needs Assessment Tool (CSNAT) is designed to facilitate person-centred assessment and support through a process that is practitioner-facilitated, but carer-led. This study explored practitioners’ experiences of implementing the CSNAT in palliative homecare. Methods We conducted qualitative interviews/focus groups with 20 practitioners in one UK hospice homecare service (18 nurses, two healthcare assistants) before and after the implementation of the CSNAT. Thematic analysis of the data was underpinned by framework analysis. Results Not all practitioners appreciated that using the CSNAT required a shift towards a more person-centred approach to assessment; consequently they tagged the tool onto their existing practitioner-led practice. Practitioners who did use the CSNAT as intended were able to act as role models and support their colleagues in making this transition. Practitioners’ comments revealed a number of contradictions: 1) Most felt that they ‘already do’ identify carer support needs, but feared using the CSNAT could increase their workload; 2) some worried about introducing the CSNAT ‘too soon’, but recognised that it was ‘too late’ once patients were close to the end of life; 3) whilst practitioners stated ‘they were there for the family as well as the patient’, care provision was overtly centred around patients. Conclusion This study provides vital insights into barriers and facilitators to implementing the CSNAT as part of a person-centred approach to assessment. The findings identified the training and support required to help practitioners make this transition to this new way of working. PMID:28622348

  9. Effectiveness of psychosocial interventions in reducing grief experienced by family carers of people with dementia: a systematic review.

    PubMed

    Wilson, Sally; Toye, Christine; Aoun, Samar; Slatyer, Susan; Moyle, Wendy; Beattie, Elizabeth

    2017-03-01

    Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms have been implemented. However, the effect of psychosocial interventions on family carers' grief, loss or bereavement has not been examined. To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief, pre- and post-bereavement, for family carers of people with dementia. Family carers of older persons with dementia (>65 years). Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers adjust to grief during the dementia trajectory and/or following death. No treatment, standard care or treatment as usual, or an alternative intervention. Experimental and epidemiological study designs. Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments. A three-step strategy sought to identify both published and unpublished studies from 1995. Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently. Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures. Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple post-test quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the United States. There were 327 family carers, of which 197 received a psychosocial

  10. Adapting a SSKIN bundle for carers to aid identification of pressure damage and ulcer risks in the community.

    PubMed

    McCoulough, Siobhan

    2016-06-01

    If pressure damage is identified and addressed at an early stage, it may be reversed. Otherwise, it may quickly progress into a serious deep tissue injury. In the community, most daily skin care is undertaken by formal and informal carers. They therefore need to know how to identify signs that pressure ulcers may develop and what immediate actions to take. NICE guidance on pressure ulcer prevention is too extensive to be a simple tool for carers, so a SSKIN bundle was adapted for community use. This ensures carers know how to prevent and identify pressure damage, and includes skin care, repositioning and use of equipment. Carers need training. This is the responsibility of all involved with the patient, including health-care and local authority services.

  11. Measuring carers' knowledge of depression in aged care settings: the Knowledge of Late Life Depression Scale-Revised.

    PubMed

    Karantzas, Gery C; Davison, Tanya E; McCabe, Marita P; Mellor, David; Beaton, Paul

    2012-05-01

    Aged care staff is increasingly relied upon to assist with the recognition and treatment of depression in older care recipients. However, there exist few reliable and comprehensive measures that assess aged care staffs' knowledge about late life depression. The Knowledge of Late-Life Depression Scale is one such scale. In this study we modified this measure in an attempt to improve its psychometric properties so that it can be used with confidence in research and practise. Our modifications to the original measure resulted in the Knowledge of Late-Life Depression Scale-Revised. Aged care staff (N=149) from 20 low level care facilities and community care facilities in Melbourne, Australia, completed the Knowledge of Late-Life Depression Scale-Revised. Using Confirmatory Factor Analysis and reliability analysis, the Knowledge of Late-Life Depression Scale-Revised was found to demonstrate three robust and internally consistent factors. These factors were: symptoms of depression, facts about depression, and myths of depression. The revised measure was found to yield superior psychometric properties compared to the original measure. Replication studies are required, especially with other aged carer samples to ensure that the factor structure and internal consistency of the measure are supported across different aged care contexts in Australia and elsewhere. The Knowledge of Late-Life Depression-Revised is a measure that can be used by researchers and agencies to assess the knowledge of depression among professional care staff. The measure is expected to be especially useful as an assessment tool for training and educational purposes. Copyright © 2012 Elsevier B.V. All rights reserved.

  12. Carers' experiences, needs and preferences during inpatient stroke rehabilitation: a protocol for a systematic review of qualitative studies.

    PubMed

    Luker, Julie A; Bernhardsson, Susanne; Lynch, Elizabeth; Murray, Carolyn; Hill, Olivia P; Bernhardt, Julie

    2015-08-11

    Large numbers of people provide carer roles for survivors of stroke. Person-centred stroke rehabilitation must consider the perspectives of carers, as stroke affects not only the stroke survivor but also the quality of life and health of the carers. There is little collective knowledge about stroke carers' experiences, needs and preferences during the inpatient stroke rehabilitation process to then inform person-centred service improvements. Our objective is to report and synthesise experiences, needs and preferences of the carers of stroke survivors undergoing rehabilitation in inpatient settings. We will conduct a systematic review of qualitative studies using a thematic synthesis methodology. We will follow the Enhancing Transparency in Reporting the Synthesis of Qualitative Research Guidelines (ENTREQ) and search the following databases for relevant articles: MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Embase, and Web of Science. No language or publication date constraints will be applied. Eligible studies will have to use qualitative methods of data collection and analysis and reported data from the carers of stroke survivors who underwent inpatient stroke rehabilitation. Studies will be eligible for inclusion if they report the experiences, needs and preferences of carers regarding inpatient rehabilitation environments, organisation, care systems, therapeutic interventions, information exchange, carer training, discharge and community service planning and other issues of relevance to their roles as carers. Study selection and assessment of quality will be performed independently by two reviewers. Any disagreement will be resolved by a third reviewer. Data will be extracted by one reviewer, tabled, and checked for accuracy by another reviewer. All text reported in studies' results, discussion and conclusion sections will be entered into the NVivo software for analysis. Extracted texts will be inductively coded

  13. Not worth the risk? Attitudes of adults with learning difficulties, and their informal and formal carers to the hazards of everyday life.

    PubMed

    Heyman, B; Huckle, S

    1993-12-01

    Twenty adults with learning difficulties (adults) living at home with informal carers, mostly parents, and attending Adult Training Centres (ATCs) were interviewed about their everyday lives and information was also obtained from informal and formal carers. The problem of dealing with the hazards of everyday life emerged as an important theme. The thinking of adults and informal carers could be understood in terms of the moral dimension of hazards, through the distinction between risks, to be calculated, and dangers, to be avoided. Adults and informal carers within families largely agreed in their categorization of hazards but differences were found. In families where the head of the household had had a professional or skilled manual occupation, adults and informal carers were most likely to agree that hazards for the adult were dangers to be avoided. In families which had a history of unemployment or unskilled occupations, adults and informal carers were most likely to treat certain hazards as risks to be taken. The latter families were also less likely to have 2 informal carers. Adults from more risk-tolerant families appeared to be achieving more of their potential in everyday living skills. Formal carers at ATCs were more accepting of risks for adults with learning difficulties than informal carers and there was misunderstanding and conflict between formal and informal carers as a result.

  14. A randomized controlled pilot study to evaluate a technology platform for the assisted living of people with dementia and their carers.

    PubMed

    Torkamani, Mariam; McDonald, Louise; Saez Aguayo, Ignasi; Kanios, Christos; Katsanou, Maria-Nefeli; Madeley, Laura; Limousin, Patricia D; Lees, Andrew J; Haritou, Maria; Jahanshahi, Marjan

    2014-01-01

    The use of telemedicine is becoming increasingly popular in assisting with the home management of People with Dementia (PwD) by offering services to the carers that may enhance their ability to care for their relative for longer. A computerized platform, ALADDIN, was evaluated in its usefulness to reduce carer burden and distress and to improve their quality of life, in an attempt to delay institutionalization of PwD. ALADDIN offers educational material about dementia to carers and provides the opportunity to contact other carers and clinicians. ALADDIN also facilitates remote monitoring of the PwD and their carers by the clinicians to enable speedy delivery of appropriate intervention. The ALADDIN platform was piloted at three European sites, and used by thirty carers of PwD living in the community (platform group). The platform group and a control group of thirty PwD and their carers were assessed at baseline, 3 months, and 6 months. The results showed a significant improvement in the quality of life of the carers in the platform group, with some reduction in carer burden and distress. The platform was useful in monitoring the patients and facilitating contact with other professionals. Access to and use of the ALADDIN platform was rated positively by carers and clinicians. The ALADDIN platform's usefulness and applicability for prolonging the home management of PwD are discussed.

  15. Service User- and Carer-Reported Measures of Involvement in Mental Health Care Planning: Methodological Quality and Acceptability to Users

    PubMed Central

    Gibbons, Chris J.; Bee, Penny E.; Walker, Lauren; Price, Owen; Lovell, Karina

    2014-01-01

    Background: Increasing service user and carer involvement in mental health care planning is a key healthcare priority but one that is difficult to achieve in practice. To better understand and measure user and carer involvement, it is crucial to have measurement questionnaires that are both psychometrically robust and acceptable to the end user. Methods: We conducted a systematic review using the terms “care plan$,” “mental health,” “user perspective$,” and “user participation” and their linguistic variants as search terms. Databases were searched from inception to November 2012, with an update search at the end of September 2014. We included any articles that described the development, validation or use of a user and/or carer-reported outcome measures of involvement in mental health care planning. We assessed the psychometric quality of each instrument using the “Evaluating the Measurement of Patient-Reported Outcomes” (EMPRO) criteria. Acceptability of each instrument was assessed using novel criteria developed in consultation with a mental health service user and carer consultation group. Results: We identified eleven papers describing the use, development, and/or validation of nine user/carer-reported outcome measures. Psychometric properties were sparsely reported and the questionnaires met few service user/carer-nominated attributes for acceptability. Where reported, basic psychometric statistics were of good quality, indicating that some measures may perform well if subjected to more rigorous psychometric tests. The majority were deemed to be too long for use in practice. Discussion: Multiple instruments are available to measure user/carer involvement in mental health care planning but are either of poor quality or poorly described. Existing measures cannot be considered psychometrically robust by modern standards, and cannot currently be recommended for use. Our review has identified an important knowledge gap, and an urgent need to

  16. Unmet supportive care needs and interest in services among patients with a brain tumour and their carers.

    PubMed

    Janda, Monika; Steginga, Suzanne; Dunn, Jeff; Langbecker, Danette; Walker, David; Eakin, Elizabeth

    2008-05-01

    To assess the supportive care needs and interest in related services among brain tumour patients and their carers and to compare the level of unmet needs to other cancer populations. A cross-sectional survey was posted to 363 households who were subscribed to the Queensland Cancer Fund Brain Tumour Support Service in 2005. Overall, 75 patients and 70 carers (response rate 29.8%) returned completed questionnaires. Measures were the Supportive Care Needs Survey (SCNS-34) and a brain tumour specific subscale for patients and carers, as well as the Hospital Anxiety and Depression Scale (HADS). Patients most frequently reported requiring support to overcome fatigue, uncertainty about the future and not being able to do the things they used to do. Carers wanted help dealing with fears about the patients mental or physical deterioration, with the impact caring had on their own life, and with reducing stress in the patient's life. Among patients, 30% reported anxious mood and 17% depressed mood on the HADS, while corresponding numbers for carers were 40% and 10%, respectively. Patients and/or carers with higher than average supportive care needs expressed greater interest in support services, such as those to improve physical activity, using community services more effectively and to manage stress. Greater emotional distress predicted higher supportive care needs (e.g. odds ratio depressed patients=2.11; (95% confidence interval 1.10-4.03), while no association was detected between patients' or carers' demographic characteristics, or patients' self-reported medical status and higher than average supportive care needs. The level of unmet supportive care needs observed among patients with a brain tumour and their carers is similar to that observed among cancer populations with metastatic disease. Interventions for this group should integrate lifestyle, coping support, and neuropsychological rehabilitation.

  17. Providing general practice needs-based care for carers of people with advanced cancer: a randomised controlled trial.

    PubMed

    Mitchell, Geoffrey K; Girgis, Afaf; Jiwa, Moyez; Sibbritt, David; Burridge, Letitia H; Senior, Hugh E

    2013-10-01

    Carers of patients with advanced cancer often have health and psychosocial needs, which are frequently overlooked. To meet the needs of carers through a GP consultation directed by a self-completed carer needs checklist. Randomised controlled trial in general practice with recruitment through specialist oncology clinics, in Brisbane, Australia. Intervention was (a) carer-GP consultations directed by a self-completed checklist of needs at baseline and 3 months; and (b) a GP-Toolkit to assist GPs to address carer-identified needs. Control group received usual care. Outcome measures were intensity of needs, anxiety and depression, and quality of life. Total recruitment 392. Overall, no significant differences were detected in the number or intensity of need between groups. Compared to controls, intervention participants with baseline clinical anxiety showed improvements in mental wellbeing (P = 0.027), and those with baseline clinical depression had slower development of anxiety (P = 0.044) at 6 months. For those not anxious, physical wellbeing improved at 1 month (P = 0.040). Carers looking after patients with poor functional status had more physical needs (P = 0.037) at 1 month and more psychological and emotional needs at 3 months (P = 0.034). Those caring for less unwell patients showed improved mental wellbeing at 3 months (P = 0.022). The intervention did not influence the number or intensity of needs reported by carers of people with advanced cancer. There was limited impact in people with pre-existing clinical anxiety and depression. For the carer of those most severely affected by advanced cancer, it drew attention to the needs arising from the caregiving role.

  18. Role of domiciliary and family carers in individualised nutrition support for older adults living in the community.

    PubMed

    Marshall, Skye; Agarwal, Ekta; Young, Adrienne; Isenring, Elizabeth

    2017-04-01

    Protein-energy malnutrition is common amongst people aged 65 years and older, has a multifactorial aetiology, and numerous negative outcomes. Domiciliary carers (non-clinical paid carers) and family carers (including family, friends and neighbours) are required to support the increasing demand for in-home assistance with activities of daily living due to the ageing population. This review provides insight into the role of both domiciliary and family carers in providing individualised nutrition support for older, community-dwelling adults with malnutrition. Four electronic databases were searched for intervention studies from database inception to December 2016. Both domiciliary and family carers are well placed to monitor the dietary intake and nutritional status of older adults; to assist with many food-related tasks such as the sourcing and preparation of meals, and assisting with feeding when necessary; and to act as a conduit between the care recipient and formal nutrition professionals such as dietitians. There is moderate evidence to support the role of domiciliary carers in implementing nutrition screening and referral pathways, and emerging evidence suggests they may have a role in malnutrition interventions when supported by health professionals. Moderate evidence also supports the engagement of family carers as part of the nutrition care team for older adults with malnutrition. Interventions such as group education, skill-development workshops and telehealth demonstrate promise and have significantly improved outcomes in older adults with dementia. Further interventional and translational research is required to demonstrate the efficacy of engaging with domiciliary and family carers of older adults in the general community.

  19. Specialist nursing and community support for the carers of people with dementia living at home: an evidence synthesis.

    PubMed

    Bunn, Frances; Goodman, Claire; Pinkney, Emma; Drennan, Vari M

    2016-01-01

    Specialist nurses are one way of providing support for family carers of people with dementia, but relatively little is known about what these roles achieve, or if they are more effective than roles that do not require a clinical qualification. The aim of this review was to synthesise the literature on the scope and effectiveness of specialist nurses, known as Admiral Nurses, and set this evidence in the context of other community-based initiatives to support family carers of people with dementia. We undertook a systematic review of the literature relating to the scope and effectiveness of Admiral Nurses and a review of reviews of interventions to support the family carers of people with dementia. To identify studies, we searched electronic databases, undertook lateral searches and contacted experts. Searches were undertaken in November 2012. Results are reported narratively with key themes relating to Admiral Nurses identified using thematic synthesis. We included 33 items relating to Admiral Nurses (10 classified as research) and 11 reviews evaluating community-based support for carers of people with dementia. There has been little work to evaluate specific interventions provided by Admiral Nurses, but three overarching thematic categories were identified: (i) relational support, (ii) co-ordinating and personalising support and (iii) challenges and threats to the provision of services by Admiral Nurses. There was an absence of clearly articulated goals and service delivery was subject to needs of the host organisation and the local area. The reviews of community-based support for carers of people with dementia included 155 studies but, in general, evidence that interventions reduced caregiver depression or burden was weak, although psychosocial and educational interventions may reduce depression in carers. Community support for carers of people with dementia, such as that provided by Admiral Nurses, is valued by family carers, but the impact of such initiatives is

  20. 'Doubly deprived': a post-death qualitative study of primary carers of people who died in Western Australia.

    PubMed

    Keesing, Sharon; Rosenwax, Lorna; McNamara, Beverley

    2011-11-01

    This paper explores the daily experiences and occupational needs of family carers of people who were dying, with particular reference to their daily routines and ability to undertake other varied activities during the period of care. The impact of the caring experience on these occupations was then examined to determine how, and if, these occupational needs were addressed in the community using potential and available services. An exploratory approach using grounded theory was employed to examine these experiences. Participants were recruited from metropolitan (n = 10) and rural (n = 4) locations across Western Australia between February and June 2009, using a purposive sampling method. A semi-structured interview guide was developed following consultation with the literature, expert opinion and piloting. Interviews were conducted in participants' homes and questions were asked about their experiences as a carer including routines, engagement in usual activities and the impact of the caring role on their daily life during and after the period of care. Each interview was transcribed verbatim and analysed to determine potential themes. Two important themes were identified: (1) Carers experienced disengagement and deprivation from their usual occupations during and after the period of care; and (2) Participants described significant disempowerment in their role as carer. Carers are 'doubly disadvantaged' as a result of their caring role; they are unable to participate in their usual occupations and they are not recognised for their contributions as carers. Carers experienced disengagement and deprivation from their usual occupations, contributing to physical, psychological and emotional difficulties and this may result in long term consequences for health and well-being. In addition, the current services and support available for carers in the community are deemed inadequate; placing further stress on a health care system which needs to cope with increasing

  1. Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial.

    PubMed

    Brazil, Kevin; Carter, Gillian; Cardwell, Chris; Clarke, Mike; Hudson, Peter; Froggatt, Katherine; McLaughlin, Dorry; Passmore, Peter; Kernohan, W George

    2017-07-01

    In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers.

  2. Provision of dental care in aged care facilities NSW Australia- Part 2 as perceived by the carers (care providers).

    PubMed

    Webb, Bettine C; Whittle, Terry; Schwarz, Eli

    2015-12-01

    To investigate carers' perception of the provision of dental care in aged care facilities (ACFs) New South Wales (NSW), Australia. Carers are responsible for 'hands-on, day-to-day' care of residents, including dental care, yet there were no specific figures available concerning their role in NSW ACFs. Questionnaires were mailed to 406 NSW directors of nursing (DONs) requesting completion by a carer who was proficient in English and without the influence of the DON. The 23-item questionnaire was presented in 4 sections, and the data qualitatively analysed. 211 questionnaires were completed and returned, giving a response rate of 52%. Carers were mostly female (91.9%) in the 40-50 and >50 age groups. Oral health training had been received by 66.7% of carers, and although 73.2% thought that their training was adequate, carers in general requested further training. Long waiting periods for government dental services (69.4%) and resident unable to communicate oral health problems (69.2%) were seen as the most frequent barriers to dental care. Almost all carers reported the availability of electric tooth brushes, fluoride gel, disclosing tablets/gel, interdental brushes and the use of a foam mouth prop, while few reported the use of other dental care products. As carers provided almost all of oral health care for residents, emphasis should be placed on training in geriatric dental care techniques and use of dental products. © 2013 John Wiley & Sons A/S and The Gerodontology Society. Published by John Wiley & Sons Ltd.

  3. Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers.

    PubMed

    Samsi, Kritika; Manthorpe, Jill

    2013-06-01

    Exercising choice and control over decisions is central to quality of life. The Mental Capacity Act 2005 (England and Wales) provides a legal framework to safeguard the rights of people with dementia to make their own decisions for as long as possible. The impact of this on long-term planning has been investigated; everyday decision-making in people's own homes remains unexplored. Using a phenomenological approach, we interviewed 12 dyads (one person with dementia + one carer) four times over one year to ascertain experience of decision-making, how decisions were negotiated, and how dynamics changed. Qualitative interviews were conducted in people's own homes, and thematic analysis was applied to transcripts. Respecting autonomy, decision-specificity and best interests underlay most everyday decisions in this sample. Over time, dyads transitioned from supported decision-making, where person with dementia and carer made decisions together, to substituted decision-making, where carers took over much decision-making. Points along this continuum represented carers' active involvement in retaining their relative's engagement through providing cues, reducing options, using retrospective information, and using the best interests principle. Long-term spouse carers seemed most equipped to make substitute decisions for their spouses; adult children and friend carers struggled with this. Carers may gradually take on decision-making for people with dementia. This can bring with it added stresses, such as determining their relative's decision-making capacity and weighing up what is in their best interests. Practitioners and support services should provide timely advice to carers and people with dementia around everyday decision-making, and be mindful how abilities may change.

  4. Assessing the impact of a Carer Support Needs Assessment Tool (CSNAT) intervention in palliative home care: a stepped wedge cluster trial.

    PubMed

    Grande, Gunn Eli; Austin, Lynn; Ewing, Gail; O'Leary, Neil; Roberts, Chris

    2017-09-01

    To test the impact on family carers of a Carer Support Needs Assessment Tool (CSNAT) intervention to facilitate carer-led assessment and support during end of life care. Mixed method, part-randomised, stepped wedge cluster trial with 6 palliative home care services comparing carers receiving the intervention with those receiving standard care. Postal survey with carers 4-5 months postbereavement measured adequacy of end of life support, current mental and physical health (Short Form 12 Health Survey SF-12), level of grief (Texas Revised Inventory of Grief, TRIG) and distress (Distress Thermometer, DT), place of death and carer satisfaction with place of death. Surveys were sent to 3260 (76%) carers of 4311 deceased patients; 681 (21%) were returned (N=333 control, N=348 intervention). Compared with controls, intervention carers had significantly lower levels of early grief, better psychological and physical health, were more likely to feel the place of death was right, and patients were more likely to die at home. However, differences were small and process measures showed low level of implementation, indicating differences may partially relate to increased awareness of carer issues rather than a direct impact of the intervention. Carers had better outcomes in the intervention condition, albeit modest. If this can be achieved through low level implementation and awareness raising of carers' needs from implementation activities, substantial impact should be possible if the CSNAT intervention can be fully implemented with a majority of carers. The study illustrates challenges of implementing and testing a complex intervention in real-life practice and of achieving comprehensive carer assessment and support in line with government recommendations. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  5. Involving users and carers in the assessment of preregistration nursing students' clinical nursing practice: a strategy for patient empowerment and quality improvement?

    PubMed

    Haycock-Stuart, Elaine; Donaghy, Eddie; Darbyshire, Chris

    2016-07-01

    To examine (1) nursing lecturers' and (2) preregistration nursing students' perspectives of user and carer involvement in the formal assessment of preregistration nursing students' clinical practice. The involvement of service users and carers in the assessment of clinical practice in nursing education is a recent phenomenon. The Nursing and Midwifery Council Standards in the UK clearly reflect a shift in thinking from paternalistic approaches to person-centred approaches. This shift in thinking includes service user and carer involvement in student nursing assessment and there is evidence that this is being developed in several countries. Located in the interpretive paradigm, data from a two-staged, multicentre qualitative study are presented. Interpretive analysis of semi-structured, one to one interviews with nursing lecturers (n = 15) and focus groups with nursing students (n = 51) across 11 Higher Educational Institutions. There is a strong commitment for working alongside service users and carers in the education and training of nursing students; however, involving service users and carers in formal practice assessment is identified as more challenging compared with other areas of service user/carer involvement. Service user/carers should provide feedback/review or comment, but not necessarily formal, summative 'assessment'. The evidence base for involving users and carers in assessment is limited. Involvement of users and carers in providing feedback to nursing students is welcomed. However, concerns exist about the preparedness of users and carers for formal clinical assessment. Discussion and clarification with clinical mentors and user and carer groups is necessary to understand if they agree with the policy direction of user and carer involvement in the assessment of nursing students. Quality assurance concerns are raised by students and lecturers when involving user and carer in assessing nursing students' clinical skills. Mentors are seen as key to

  6. Coaching in self-efficacy improves care responses, health and well-being in dementia carers: a pre/post-test/follow-up study.

    PubMed

    Chenoweth, Lynn; Stein-Parbury, Jane; White, Danielle; McNeill, Georgene; Jeon, Yun-Hee; Zaratan, Beverley

    2016-05-04

    Maintaining the health and well-being of family carers of people with dementia is vital, given their potential for experiencing burden associated with the role. The study aimed to help dementia carers develop self-efficacy, be less hassled by the caring role and improve their health and well-being with goal-directed behaviour, by participating in an eight module carer coaching program. The study used mixed methods in a pre/post-test/follow-up design over 24 months, with assignment of consented dementia carers to either individualised (n = 16) or group coaching (n = 32), or usual carer support services (n = 43), depending on preference. Care-giving self-efficacy and hassles, carer health, well-being and goal-directed behaviours were assessed over time. Analysis of Variance (ANOVA) was used to compare changes over time and the effects of coaching on carer self-efficacy, hassles and health, using the Univariate General Linear Model (GLM). All carers were hassled by many aspects of caring at baseline. Participants receiving coaching reported non-significant improvements in most areas of self-efficacy for caring, hassles associated with caring and self-reported health at post-test and follow-up, than did carers receiving usual carer support. Group coaching had greater success in helping carers to achieve their goals and to seek help from informal and formal support networks and services. The study outcomes were generally positive, but need to be interpreted cautiously, given some methodological limitations. It has been shown, however, that health staff can assist dementia carers to develop self-efficacy in better managing their family member's limitations and behaviour, seek help from others and attend to their health. Teaching carers to use goal-directed behaviour may help them achieve these outcomes.

  7. Compliance with dysphagia recommendations by carers of adults with intellectual impairment.

    PubMed

    Crawford, Hannah; Leslie, Paula; Drinnan, Michael J

    2007-10-01

    Health risks associated with dysphagia in adults with intellectual impairment are well documented. There is little research into compliance with dysphagia recommendations in environments where care is provided for adults with intellectual impairment. This is a pilot study into carer compliance with Speech-Language Pathology recommendations. We aimed to investigate the level of compliance with dysphagia recommendations in day centers and the factors that might affect compliance using a questionnaire. Twenty-seven clients were observed. Results showed an overall high level of compliance with recommendations (82%), with figures ranging from 64% compliance with appropriate utensils to 100% with direct support recommendations. Areas of noncompliance were evident, with level of dependence of clients and training of carers being key issues. Implications for practitioners are discussed.

  8. The suitability of written education materials for stroke survivors and their carers.

    PubMed

    Eames, Sally; McKenna, Kryss; Worrall, Linda; Read, Stephen

    2003-01-01

    This study evaluated the suitability of written materials for stroke survivors and their carers. Twenty stroke survivors and 14 carers were interviewed about the stroke information they had received and their perceptions of the content and presentation of materials of increasing reading difficulty. The mean readability level of materials (grade 9) was higher than participants' mean reading ability (grade 7-8). Satisfaction with materials decreased as the content became more difficult to read. Seventy-five percent reported that their information needs were not met in hospital. More stroke survivors with aphasia wanted support from health professionals to read and understand written information, and identified simple language, large font size, color, and diagrams to complement the text as being important features of written materials. Simple materials that meet clients' information needs and design preferences may optimally inform them about stroke.

  9. Conversations between carers and people with schizophrenia: a qualitative analysis using leximancer.

    PubMed

    Cretchley, Julia; Gallois, Cindy; Chenery, Helen; Smith, Andrew

    2010-12-01

    We examined conversations between people with schizophrenia (PwS) and family or professional carers with whom they interacted frequently. We allocated PwS to one of two communication profiles: Low-activity communicators talked much less than their conversational partners, whereas high-activity communicators talked much more. We used Leximancer text analytics software to analyze the conversations. We found that carers used different strategies to accommodate to the PwS's behavior, depending on the PwS's communication profile and their relationship. These findings indicate that optimal communication strategies depend on the PwS's conversational tendencies and the relationship context. They also suggest new opportunities for qualitative assessment via intelligent text analytics technologies.

  10. Professional carers' experiences of providing a pediatric palliative care service in Ireland.

    PubMed

    Clarke, Jean; Quin, Suzanne

    2007-11-01

    In this article the authors present findings on professional carers' experience of providing pediatric palliative care to children with life-limiting conditions. For this qualitative study, part of a national pediatric palliative care needs analysis, the authors engaged in 15 focus group interviews and drew on the responses of open-ended questions to give voice to the experiences of professional carers and to situate the humanity of their caring reality. This humanity is articulated through three themes: clarity of definition and complexity of engagement, seeking to deliver a palliative care service, and the emotional cost of providing palliative care. Further analysis of these themes points to a work-life experience of skilled and emotional engagement with children, and their parents, in complex processes of caregiving and decision making. Pediatric palliative care occurs in an environment where parents shoulder a large burden of the care and professionals find themselves working in underresourced services.

  11. Barriers to Co-Designing Mobile Technology with Persons with Dementia and Their Carers.

    PubMed

    O'Connor, Siobhan; Bouamrane, Matt-Mouley; O'Donnell, Catherine A; Mair, Frances S

    2016-01-01

    Mobile applications can be used to help manage different aspects of long-term illnesses but many are not designed to meet the specific needs of people with dementia or their carers. This case study explores the barriers experienced when co-producing a memory and reminiscence app. A focus group and interviews were conducted with patient/carer dyads, an occupational therapist, project manager and software engineer involved in the design of the app. Data was analysed thematically using the framework approach. Several limitations such as poor technical knowledge and skills, negative attitudes and inaccurate perceptions of people with dementia slowed down or changed how the mobile app was developed. Compromises also had to be made over the final design of the app. More research to explore how mobile apps are co-designed with patients is needed.

  12. Experiences of service user and carer participation in health care education.

    PubMed

    Lathlean, Judith; Burgess, Abigail; Coldham, Tina; Gibson, Colin; Herbert, Lesley; Levett-Jones, Tracy; Simons, Lucy; Tee, Stephen

    2006-12-01

    The agenda of involving service users and their carers more meaningfully in the development, delivery and evaluation of professional education in health is gaining in importance. The paper reports on a symposium which presented three diverse initiatives, established within a school of nursing and midwifery in the United Kingdom. These represent different approaches and attempts to engage service users and in some instances carers more fully in professional education aimed at developing mental health practitioners. Each is presented as achieving movement on a continuum of participation from service users as passive recipients to service users as collaborators and co-researchers. The paper concludes with a discussion of the lessons to be learnt which will hopefully stimulate service user involvement on a wider basis.

  13. The chicken or the egg? Endogeneity in labour market participation of informal carers in England.

    PubMed

    Heitmueller, Axel

    2007-05-01

    Around 14% of the UK labour force has informal care responsibilities and almost everyone in society will be an informal carer in their lifetime. A well-known fact in the small economic literature on informal care is the apparent negative relation between care responsibilities and labour market participation. Yet, caring and labour market participation may be endogenous. Using an instrumental variable approach and panel data techniques and employing data from the British Household Panel Study from 1991 to 2002, this paper shows that not accommodating for endogeneity in the labour market participation equation may significantly overestimate the impact care exhibits on the employment decision of informal carers. Moreover, it is shown that a negative impact on employment only applies to some care-types. Policy implications are derived.

  14. Not sick enough: Experiences of carers of people with mental illness negotiating care for their relatives with mental health services.

    PubMed

    Olasoji, M; Maude, P; McCauley, K

    2017-08-01

    WHAT IS KNOWN ON THE SUBJECT?: Existing literature provides insight into the general experience of carers of people with a mental illness. Previous studies have found that carers experience a range of emotions when looking after their relatives with a mental illness. However, experiences of carers as they engage with the healthcare system is largely absent from the literature. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This paper identified the experiences of carers when their relatives are experiencing a crisis or acutely unwell. Carers found themselves in the middle between mental health services and their relatives. Strategies employed by carers to ensure their relatives receive adequate care were identified from this study. This paper identified how carers needed to become more assertive in order to receive adequate care for their relatives, and this finding has implications for any future carer education. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: The participants identified the need to work more collaboratively with carers of people with a mental illness as they seek treatment for their relatives in order to achieve better health outcomes for the patients. Improved health service engagement of carers was seen by participants to assist them to better care for their relative. The study also found that there needs to be a clearer definition as to what constitutes mental health crisis and how carers are able to intervene during this period. Services could provide clear information concerning crisis services and in particular triage. Aim The literature reporting experiences of relatives of people with mental illness regarding their interactions with mental health services identifies many commonalities. However, the actual experience of carers engaging the services and understanding healthcare systems remains a gap in the literature. The aim of this study was to explore the experiences of carers (of people with a severe mental illness) in a major area mental health

  15. Social problem solving in carers of young people with a first episode of psychosis: a randomized controlled trial.

    PubMed

    McCann, Terence V; Cotton, Sue M; Lubman, Dan I

    2017-08-01

    Caring for young people with first-episode psychosis is difficult and demanding, and has detrimental effects on carers' well-being, with few evidence-based resources available to assist carers to deal with the problems they are confronted with in this situation. We aimed to examine if completion of a self-directed problem-solving bibliotherapy by first-time carers of young people with first-episode psychosis improved their social problem solving compared with carers who only received treatment as usual. A randomized controlled trial was carried out through two early intervention psychosis services in Melbourne, Australia. A sample of 124 carers were randomized to problem-solving bibliotherapy or treatment as usual. Participants were assessed at baseline, 6- and 16-week follow-up. Intent-to-treat analyses were used and showed that recipients of bibliotherapy had greater social problem-solving abilities than those receiving treatment as usual, and these effects were maintained at both follow-up time points. Our findings affirm that bibliotherapy, as a low-cost complement to treatment as usual for carers, had some effects in improving their problem-solving skills when addressing problems related to the care and support of young people with first-episode psychosis. © 2015 The Authors. Early Intervention in Psychiatry published by Wiley Publishing Asia Pty Ltd.

  16. Helpful Factors in the Treatment of Depression from the Patient's, Carer's and Professional's Perspective: A Concept Map Study.

    PubMed

    van Grieken, Rosa A; Verburg, Hanka F; Koeter, Maarten W J; Stricker, Jessica; Nabitz, Udo W; Schene, Aart H

    2016-01-01

    Depression research has resulted in knowledge about neurobiology, pharmacological strategies and short-term cost-effective treatments. However, more than two-thirds of all depressed patients experience insufficient improvement. Therefore, a better understanding of what patients, carers and professionals perceive as most helpful in the treatment of depression is needed. Concept mapping, a mixed-method design, was used to identify the patients (n = 33), carers (n = 22) and professionals (n = 50) perspectives. In six brainstorm sessions, the patients, carers and professionals generated 795 ideas, which were condensed into 55 unique statements. Subsequently, 100 participants prioritized and sorted these statements, which were analysed by multidimensional scaling and cluster analysis and visualized as a two-dimensional map. The 55 statements were clustered in 10 factors and further grouped into four main-factors (meta-clusters): 'Professional therapist', 'Treatment content', 'Structured treatment process' and 'Treatment organisation'. Patients and carers prioritized 'Treatment organisation' higher than professionals, but overall there was considerable agreement about the factors of treatment the participants perceived as most helpful including factors related to the therapeutic relationship and the 'creation of hope'. Our study identified factors of depression treatment perceived as helpful according to patients, carers and professionals. Findings suggest that in a scientific era with emphasis on biological psychiatry, not only patients and carers, but also professionals consider aspecific factors the most helpful. Further studies might show that factors we found to be helpful in the treatment for depression, can be generalized to mental health treatment in general.

  17. Developing a policy to empower informal carers to administer subcutaneous medication in community palliative care; a feasibility project.

    PubMed

    Lee, Louise; Howard, Kay; Wilkinson, Lyn; Kern, Cheryl; Hall, Sarah

    2016-08-01

    This article describes the development and implementation of a policy to support community professionals to train informal carers to give, 'as required ', subcutaneous medications to their relative. In a rural county, Lincolnshire, despite out of hours responsive services, patients could wait up to one hour for subcutaneous medications. Additionally there were increasing requests from carers to participate in this role. To provide a safe and effective framework via a robust policy to support informal carers to give, as required, subcutaneous medications in today's health-care environment. A group of professionals working in adult community palliative care formed a working party to scope the literature and existing policies, and to consider risks, legalities and local infrastructure. The policy was developed and based on available literature. A consultation process on the policy was commenced before a series of educational workshops supported its roll out. The small number of informal carers (n=5) who undertook this role reported positive experiences and felt empowered. Professionals found the policy was able to be implemented quickly and was adhered to. From the small numbers audited it could be suggested that if the process is well managed and the informal carers feel supported they can safely and effectively administer subcutaneous injections in community palliative care. More importantly, if a policy is available, staff can respond to requests from carers in a timely manner.

  18. Experiences with using information and communication technology to build a multi-municipal support network for informal carers.

    PubMed

    Torp, Steffen; Bing-Jonsson, Pia C; Hanson, Elizabeth

    2013-09-01

    This multi-municipal intervention study explored whether informal carers of frail older people and disabled children living at home made use of information and communication technology (ICT) to gain knowledge about caring and to form informal support networks, thereby improving their health. Seventy-nine informal carers accessed web-based information about caring and an e-based discussion forum via their personal computers. They were able to maintain contact with each other using a web camera and via normal group meetings. After the first 12 months, 17 informal carers participated in focus group interviews and completed a short questionnaire. Four staff members were also interviewed. Participant carers who had prior experiences with a similar ICT-based support network reported greater satisfaction and more extensive use of the network than did participants with no such prior experience. It seems that infrequent usage of the service may be explained by too few other carers to identify with and inappropriate recruitment procedures. Nevertheless, carers of disabled children reported that the intervention had resulted in improved services across the participant municipalities. To achieve optimal effects of an ICT-based support network due attention must be given to recruitment processes and social environment building for which care practitioners require training and support.

  19. 'It's the system working for the system': carers' experiences of learning disability services in Ireland.

    PubMed

    Power, Andrew

    2009-02-01

    The aim of this article is to examine the experiences of families with young adults with learning disabilities trying to access services. The landscape of disability services for this group is made up of day care, special vocational training and respite places. It aims to identify the extent of an implementation gap between government rhetoric and the degree to which services are characterised as being non-supportive interactions on the ground. Using Ireland as a case study, during a time when the economy is booming and government rhetoric claims unparalleled developments in allocating resources and extra respite 'places', this article identifies the main challenges faced by family carers associated with accessing appropriate services for their disabled adult child, in their attempt to achieve greater independence. This article reports the findings of a qualitative study in which individual semistructured interviews were held with family carers (n = 25) and representatives from national carer organisations (n = 6) in Ireland. These were people caring for an adult (18-30 years) with a learning disability and their experiences were also useful in cross-checking the carer organisation interviews. The findings show that there is limited flexibility, choice and availability in meeting the preferences of the service-users, and throughout the study, services were characterised as being non-supportive interactions. This is not simply symptomatic of a lack of resources. Despite improved funding, supportive attitudes and flexibility are still crucial in meeting user requirements at the level of delivery; thus highlighting that often the system works for the system, not for the user.

  20. The human dimensions of post-stroke homecare: experiences of older carers from diverse ethnic groups.

    PubMed

    Pound, Carole; Greenwood, Nan

    2016-10-01

    Very little is known about how older people from black and minority ethnic (BME) groups caring for someone after a stroke access and engage with social care services. This paper explores both the experiences of carers whose relative was receiving social care services in their own home and the value of a theory of humanising care to understand and explain these experiences. Semi-structured interviews were undertaken with 50 carers from five different ethnic groups: Asian Indian, Asian Pakistani, Black African, Black Caribbean and White British. Data were thematically analysed within a phenomenological framework. Five interacting themes emerged: communication and bureaucracy; time and timing; communication and rapport building; trust and safety; humanity and the human dimensions of care. Many of the experiences could be interpreted within a conceptual framework of humanising care underpinned by eight interacting dimensions of what it means to be treated as an individual and a human. Carers from BME and White British groups share many experiences of homecare although language and cultural difference may exacerbate common pressures and stresses. The framework for humanising care is a useful tool to evaluate aspects of homecare that are responsive to dignity and diversity. Implications for Rehabilitation Explicitly identifying, describing and valuing the human dimensions of care may support services in responding appropriately to homecare users from black minority ethnic communities as well as those from white majority groups. Unresponsive services and poor communication may lead to loss of trust with care agencies and undermine BME carers' sense of entitlement and competence in engaging with homecare services. Care worker continuity investing time in building relationships and care worker familiarity is important to many families who access social care services.

  1. Consumers and Carers Versus Pharmacy Staff: Do Their Priorities for Australian Pharmacy Services Align?

    PubMed

    McMillan, Sara S; Kelly, Fiona; Sav, Adem; Kendall, Elizabeth; King, Michelle A; Whitty, Jennifer A; Wheeler, Amanda J

    2015-10-01

    Health professionals, including pharmacists, are encouraged to meet the needs of their consumers in an efficient and patient-centred manner. Yet, there is limited information as to what consumers with chronic conditions need from pharmacy as a healthcare destination or how well pharmacy staff understand these needs. The aim of this study was to identify service user priorities for ideal community pharmacy services for consumers with chronic conditions and their carers, and compare these priorities with what pharmacy staff think these groups want. The nominal group technique was undertaken with pharmacist, pharmacy support staff, consumer and carer groups in four Australian regions between December 2012 and April 2013. Participant ideas and priorities for ideal services or care were identified, and contextual insight was obtained by thematic analysis. Twenty-one nominal group sessions are accepted, including 15 consumer and carer, four pharmacist and two pharmacy support staff groups. Pharmacy staff views generally aligned with consumer priorities, such as access, affordability, patient-centred care and continuity and coordinated care, yet diverged with respect to consumer information or education on medication and services. Fundamentally, consumers and carers sought streamlined access to information and medication, in a coordinated, patient-centred approach. Alleviating financial burden was a key consumer priority, with a call for the continuation and extension of medication subsidies. Overall, pharmacy staff had a reasonable understanding of what consumers would prioritise, but further emphasis on the importance, delivery, or both, of consumer information is needed. Greater consideration is needed from policy makers regarding the financial barriers to accessing medication for consumers with chronic conditions.

  2. Investigating consumers' and informal carers' views and preferences for consumer directed care: A discrete choice experiment.

    PubMed

    Kaambwa, Billingsley; Lancsar, Emily; McCaffrey, Nicola; Chen, Gang; Gill, Liz; Cameron, Ian D; Crotty, Maria; Ratcliffe, Julie

    2015-09-01

    Consumer directed care (CDC) is currently being embraced internationally as a means to promote autonomy and choice for consumers (people aged 65 and over) receiving community aged care services (CACSs). CDC involves giving CACS clients (consumers and informal carers of consumers) control over how CACSs are administered. However, CDC models have largely developed in the absence of evidence on clients' views and preferences. We explored CACS clients' preferences for a variety of CDC attributes and identified factors that may influence these preferences and potentially inform improved design of future CDC models. Study participants were clients of CACSs delivered by five Australian providers. Using a discrete choice experiment (DCE) approach undertaken in a group setting between June and December 2013, we investigated the relative importance to CACS consumers and informal (family) carers of gradations relating to six salient features of CDC (choice of service provider(s), budget management, saving unused/unspent funds, choice of support/care worker(s), support-worker flexibility and level of contact with service coordinator). The DCE data were analysed using conditional, mixed and generalised logit regression models, accounting for preference and scale heterogeneity. Mean ages for 117 study participants were 80 years (87 consumers) and 74 years (30 informal carers). All participants preferred a CDC approach that allowed them to: save unused funds from a CACS package for future use; have support workers that were flexible in terms of changing activities within their CACS care plan and; choose the support workers that provide their day-to-day CACSs. The CDC attributes found to be important to both consumers and informal carers receiving CACSs will inform the design of future CDC models of service delivery. The DCE approach used in this study has the potential for wide applicability and facilitates the assessment of preferences for elements of potential future aged care

  3. Self-esteem in carers of frail older people: resentment predicts anxiety and depression.

    PubMed

    Aggar, Christina; Ronaldson, Susan; Cameron, Ian D

    2011-08-01

    Anxiety and depression are major health problems for carers of frail older people. Positive reactions to caregiving have been shown to protect people against anxiety and depression. The aims of this study are to explore specific aspects of self-esteem, termed positive caregiving reactions, and examine its relationship with caregiving anxiety and depressive symptoms. A cross-sectional study of a cohort of carers (n = 119) of community-living people (70 years) identified empirically as frail completed postal questionnaires. Positive caregiver reactions were evaluated using the self-esteem subscale (seven items) of the Caregiver Reaction Assessment (CRA). Anxiety and depressive symptoms were measured using the Hospital Anxiety and Depression Scale. Anxiety and depressive symptoms were related significantly (p < 0.05) to six of the seven CRA self-esteem items. Caregiving resentment scores were relatively low, mean score (SD) 1.79 (0.91) on a 1-5 scale with higher scores indicating more resentment: yet regression analysis revealed that this factor was the only independent predictor of anxiety and depressive symptoms (r²  = 0.093, p = 0.044 for anxiety, and r² = 0.121, p = 0.041 for depression). The results of this study indicate that those carers who resent having to care for their frail older relative are susceptible to anxiety and depressive symptoms. This study supports the notion that there is a need for assessment of caregiving reactions in carers of frail older people.

  4. Out-of-hours palliative care: a qualitative study of cancer patients, carers and professionals

    PubMed Central

    Worth, Allison; Boyd, Kirsty; Kendall, Marilyn; Heaney, David; Macleod, Una; Cormie, Paul; Hockley, Jo; Murray, Scott

    2006-01-01

    Background New out-of-hours healthcare services in the UK are intended to offer simple, convenient access and effective triage. They may be unsatisfactory for patients with complex needs, where continuity of care is important. Aim To explore the experiences and perceptions of out-of-hours care of patients with advanced cancer, and with their informal and professional carers. Design of study Qualitative, community-based study using in-depth interviews, focus groups and telephone interviews. Setting Urban, semi-urban and rural communities in three areas of Scotland. Method Interviews with 36 patients with advanced cancer who had recently used out-of-hours services, and/or their carers, with eight focus groups with patients and carers and 50 telephone interviews with the patient's GP and other key professionals. Results Patients and carers had difficulty deciding whether to call out-of-hours services, due to anxiety about the legitimacy of need, reluctance to bother the doctor, and perceptions of triage as blocking access to care and out-of-hours care as impersonal. Positive experiences related to effective planning, particularly transfer of information, and empathic responses from staff. Professionals expressed concern about delivering good palliative care within the constraints of a generic acute service, and problems accessing other health and social care services. Conclusions Service configuration and access to care is based predominantly on acute illness situations and biomedical criteria. These do not take account of the complex needs associated with palliative and end-of-life care. Specific arrangements are needed to ensure that appropriately resourced and integrated out-of-hours care is made accessible to such patient groups. PMID:16438809

  5. An investigation of family carers' needs following stroke survivors' discharge from acute hospital care in Australia.

    PubMed

    Perry, Lin; Middleton, Sandy

    2011-01-01

     To expand understanding of informal stroke care-giving, validated tools previously used in Hong Kong and in the U.K. were used with Australian stroke carers to assess their stroke-related knowledge, perceived needs, satisfaction with services received and sense of burden after stroke patients' discharge home from acute hospital care.  Record audit and telephone interviews with two cohorts of 32 carers recruited in Sydney and Brisbane 1 and 3 months post-hospital discharge, using validated scales and open questions in May-July 2006.  Female carers, those with prior care-giving responsibility, and those interviewed at three compared to one month post-discharge reported greatest needs and burden from the care-giving role; needs alone significantly predicted burden. Getting information and being prepared for life after discharge were central concerns. Some felt this was accomplished, but inadequate information giving and communication mismatches were apparent.  Service providers need to develop partnership working with stroke families and provide a network of services and inputs that cut across conventional boundaries between health and social care, public, private and voluntary organisations, with care plans that deliver what they delineate. Stroke care-givers have common issues across countries and healthcare systems; collaborative research-based service development is advocated.

  6. Interventional studies in childhood dystonia do not address the concerns of children and their carers.

    PubMed

    Lumsden, Daniel E; Gimeno, Hortensia; Tustin, Kylee; Kaminska, Margaret; Lin, Jean-Pierre

    2015-05-01

    This study aimed to determine the main concerns/priorities of the parents and carers of children with dystonia referred to our service and whether medical interventional studies addressed these concerns. Records of children assessed by our service from June 2005-December 2012 were reviewed and expressed parental/carer concerns at initial assessment categorized using the International Classification of Functioning (ICF) Framework. Medline, CINAHL and Embase databases were searched for outcome measures of medical and surgical interventional studies in childhood dystonia. Data was collected from 273 children and young people with dystonia. The most commonly expressed concerns were: pain (104/273, 38.1%); difficulties in delivering activities of daily-living (66/273, 24.2%), difficulties with hand-use (59/273, 21.6%) and seating (41/273, 15.0%). Literature review identified 70 interventional studies, 46 neurosurgical and 24 pharmacological. The majority of neurosurgical studies (34/46) used impairment scales to measure change, with pharmacological studies typically reporting more subjective changes in motor symptoms. Only a minority of studies used assessments or scales capable of objectively addressing the concerns reported by our cohort. Existing interventional studies in childhood dystonia poorly address the main concerns of children with dystonia and their carers, limiting the conclusions which may be drawn as to true impact of these interventions in childhood. Copyright © 2015 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.

  7. Professional perspectives on service user and carer involvement in mental health care planning: A qualitative study

    PubMed Central

    Bee, Penny; Brooks, Helen; Fraser, Claire; Lovell, Karina

    2015-01-01

    Background Involving users/carers in mental health care-planning is central to international policy initiatives yet users frequently report feeling excluded from the care planning process. Rigorous explorations of mental health professionals’ experiences of care planning are lacking, limiting our understanding of this important translational gap. Objectives To explore professional perceptions of delivering collaborative mental health care-planning and involving service users and carers in their care. Design Qualitative interviews and focus groups with data combined and subjected to framework analysis. Setting UK secondary care mental health services. Participants 51 multi-disciplinary professionals involved in care planning and recruited via study advertisements. Results Emergent themes identified care-planning as a meaningful platform for user/carer involvement but revealed philosophical tensions between user involvement and professional accountability. Professionals emphasised their individual, relational skills as a core facilitator of involvement, highlighting some important deficiencies in conventional staff training programmes. Conclusions Although internationally accepted on philosophical grounds, user-involved care-planning is poorly defined and lacks effective implementation support. Its full realisation demands greater recognition of both the historical and contemporary contexts in which statutory mental healthcare occurs. PMID:26253574

  8. Intimacy as a determinant of expressed emotion in carers of people with Alzheimer's disease.

    PubMed

    Fearon, M; Donaldson, C; Burns, A; Tarrier, N

    1998-09-01

    Although high expressed emotion (EE) has been found to be an important predictor of poor prognosis in a wide range of conditions such as schizophrenia, anorexia and depression no complete explanation exists for individual differences in EE responses. The aim of this paper is to investigate the role of intimacy in determining the level of EE in carers of people with dementia. Ninety-nine carers of people with dementia who presented to Old Age Psychiatry Services in South and Central Manchester completed questionnaires to ascertain past and current levels of intimacy. Camberwell Family Interviews (CFIs) were carried out to ascertain levels of EE. Current intimacy was found to be strongly related to EE such that low current intimacy was associated with high EE and there was a significant difference between high and low intimacy groups on measures of criticism and hostility, though not warmth. The association found between intimacy and EE indicates that high EE may be a characteristic of low intimacy relationships between the carer and the cared-for-person. Since the assessment of EE is time intensive, perhaps a measure of intimacy will provide a short-hand screen for identifying critical and hostile caring environments.

  9. Long-term Care Insurance and Carers' Labor Supply - A Structural Model.

    PubMed

    Geyer, Johannes; Korfhage, Thorben

    2015-09-01

    In Germany, individuals in need of long-term care receive support through benefits of the long-term care insurance. A central goal of the insurance is to support informal care provided by family members. Care recipients can choose between benefits in kind (formal home care services) and benefits in cash. From a budgetary perspective, family care is often considered a cost-saving alternative to formal home care and to stationary nursing care. However, the opportunity costs resulting from reduced labor supply of the carer are often overlooked. We focus on the labor supply decision of family carers and the incentives set by the long-term care insurance. We estimate a structural model of labor supply and the choice of benefits of family carers. We find that benefits in kind have small positive effects on labor supply. Labor supply elasticities of cash benefits are larger and negative. If both types of benefits increase, negative labor supply effects are offset to a large extent. However, the average effect is significantly negative. Copyright © 2015 John Wiley & Sons, Ltd.

  10. Family care in chronic obstructive pulmonary disease: what happens when the carer is a man?

    PubMed

    Figueiredo, Daniela; Jácome, Cristina; Gabriel, Raquel; Marques, Alda

    2016-12-01

    Chronic obstructive pulmonary disease (COPD) is a major cause of disability, morbidity and mortality in old age, representing a significant burden for family carers. However, knowledge regarding the specific issues faced by men in the COPD caregiving role is nonexistent. This study explored the experience of husbands and sons providing care to a family member with moderate-to-severe COPD. A cross-sectional qualitative study using in-depth, semi-structured individual interviews was conducted with twelve men carers: seven husbands with a mean age of 70.9 ± 8.8 years and five sons with a mean age of 43.4 ± 10.5 years. The interviews were analysed for recurrent themes using thematic analysis. Main findings suggest that men are committed and dedicated carers; however, differences between husbands and sons related to 'meaning', 'challenges and constraints', 'fears and concerns about the future', 'needs' and 'positive aspects' have emerged. These differences reflect relationship and generational differences and are of relevance when planning adequate community support interventions. © 2015 Nordic College of Caring Science.

  11. What parents and carers think medical students should be learning about communication with children and families.

    PubMed

    Hammond, Margaret; McLean, Elspeth

    2009-09-01

    Our objective was to dynamically engage with parents and carers of children treated in a large children's hospital as experts by experience, to find out what they thought medical students should be learning about communicating with children and families in order to inform our communication teaching. We used focus groups to facilitate parents and carers in articulating the communication issues they felt were important for medical students to learn. These data were analysed, using qualitative and quantitative methods, to produce a survey for a Delphi consultation. The results of this stage were mapped onto the Calgary-Cambridge framework for the medical interview. There was considerable overlap of the data on the Calgary-Cambridge framework. There was, however, an emphasis by respondents on perceptual skills, self-awareness and partnership. Within the main tasks of the Calgary-Cambridge framework, new objectives emerged, including giving information in the right place, and the importance of the family in the multidisciplinary team. A new main task, Preparation, was highlighted. Active collaboration with parents and carers revealed areas for enhancement in our communication skill teaching, particularly with regard to relational and perceptual skills. Ways of including effective teaching of perceptual skills and the relational and humanistic aspects of communication must be explored in order to meet the needs of child patients and their families.

  12. Everyday life, culture, and recovery: carer experiences in care homes for individuals with severe mental illness.

    PubMed

    Saavedra, Javier; Cubero, Mercedes; Crawford, Paul

    2012-09-01

    Supported homes or Care Homes (CHs) have become in-services that play a fundamental role in social-health systems, particularly in mental health systems in Europe and the United States. They provide settings where residents' day-to-day routines are supervised by in-house non-clinician professional carers. Ten semi-structured in-depth interviews were conducted by expert professional carers of persons with schizophrenia to explore interactions and activities between carers and users living in special "Care Homes". Analysis focused primarily on the functions of everyday life and daily routines in the recovery process. Social positioning analysis was used to investigate meanings and subjective experiences of professionals. The analysis revealed the importance of personal interactions in daily routines for recovery. We identified two main concerns guiding professionals' interactions with users: "Bring [users] to the here and now" and "give them the initiative to start actions". We suggest that CHs promote the construction of privileged identity in western urban societies, forming part of the process towards recovery and better social integration.

  13. Professional perspectives on service user and carer involvement in mental health care planning: a qualitative study.

    PubMed

    Bee, Penny; Brooks, Helen; Fraser, Claire; Lovell, Karina

    2015-12-01

    Involving users/carers in mental health care-planning is central to international policy initiatives yet users frequently report feeling excluded from the care planning process. Rigorous explorations of mental health professionals' experiences of care planning are lacking, limiting our understanding of this important translational gap. To explore professional perceptions of delivering collaborative mental health care-planning and involving service users and carers in their care. Qualitative interviews and focus groups with data combined and subjected to framework analysis. UK secondary care mental health services. 51 multi-disciplinary professionals involved in care planning and recruited via study advertisements. Emergent themes identified care-planning as a meaningful platform for user/carer involvement but revealed philosophical tensions between user involvement and professional accountability. Professionals emphasised their individual, relational skills as a core facilitator of involvement, highlighting some important deficiencies in conventional staff training programmes. Although internationally accepted on philosophical grounds, user-involved care-planning is poorly defined and lacks effective implementation support. Its full realisation demands greater recognition of both the historical and contemporary contexts in which statutory mental healthcare occurs. Copyright © 2015 The Authors. Published by Elsevier Ltd.. All rights reserved.

  14. Service-user and carer perspectives on compliance and compulsory treatment in community mental health services.

    PubMed

    Gault, Iris

    2009-09-01

    This paper reports on a qualitative study analyzing service-user (SU) and carer perspectives on medication compliance and their experience of compulsory treatment. Eleven SUs and eight carers were interviewed. The research is set against the background of changes to mental health legislation in England, in the form of Supervised Community Treatment. This signals a change in community mental health practice and urges a reconsideration of concepts such as compliance, concordance and coercion. These concepts are discussed in the context of legislative changes and in relation to the perspectives of service-SUs and carers. Five themes emerged from qualitative interview data, analysed using an adapted form of grounded theory: loss of credible identity, playing the game, medicalization, therapeutic competence and incompetence and increased control. The findings suggest that SUs are initially reluctant to comply with mental health treatment, but do eventually accept the need for treatment; they also stress the significance of respectful relationships with professionals and the importance of communicative competence.

  15. Reliability physics

    NASA Technical Reports Server (NTRS)

    Cuddihy, E. F.; Ross, R. G., Jr.

    1984-01-01

    Speakers whose topics relate to the reliability physics of solar arrays are listed and their topics briefly reviewed. Nine reports are reviewed ranging in subjects from studies of photothermal degradation in encapsulants and polymerizable ultraviolet stabilizers to interface bonding stability to electrochemical degradation of photovoltaic modules.

  16. Peer support and reminiscence therapy for people with dementia and their family carers: a factorial pragmatic randomised trial

    PubMed Central

    Burnell, Karen; Crellin, Nadia; Hoare, Zoe; Hoe, Juanita; Knapp, Martin; Russell, Ian; Wenborn, Jennifer; Woods, Bob; Orrell, Martin

    2016-01-01

    Objective The objective of this study was to evaluate peer support and reminiscence therapy, separately and together, in comparison with usual care for people with dementia and their family carers. Design Factorial pragmatic randomised trial, analysed by treatment allocated, was used for this study. Setting The trial ran in Community settings in England. Participants People with dementia and their family carers were the participants. Interventions Treatment as usual (TAU) plus one of the following: one-to-one peer support to family carers from experienced carers (Carer Supporter Programme; CSP), group reminiscence therapy (Remembering Yesterday, Caring Today; RYCT) for people with dementia and carers, both or neither. Main outcome measures Primary outcomes included health-related quality of life (SF-12) for carers and quality of life (QoL-AD) for people with dementia; secondary outcomes included quality of relationship for carers and people with dementia; both were collected by blinded assessors at baseline, 5 and 12 months (primary end point). Results Of 291 pairs recruited, we randomised 145 (50%) to CSP (71% uptake) and 194 (67%) to RYCT (61% uptake). CSP and RYCT, separately or together, were not effective in improving primary outcomes or most secondary outcomes. For CSP versus ‘no CSP’, adjusted difference in means was 0.52 points on the SF-12 (95% CI −1.28 to 2.32) and −0.08 points on the QoL-AD (95% CI −1.70 to 1.56). For RYCT versus ‘no RYCT’, the difference was 0.10 points on the SF-12 (95% CI −1.72 to 1.93) and 0.51 points on the QoL-AD (95% CI −1.17 to 2.08). However, carers reported better relationships with the people with dementia (difference 1.11, 95% CI 0.00 to 2.21, p=0.05). Comparison of combined intervention with TAU, and of intervention received, suggested differential impacts for carers and persons with dementia. Conclusions There is no evidence from the trial that either peer support or reminiscence is effective in

  17. The experiences of working carers of older people regarding access to a web-based family care support network offered by a municipality.

    PubMed

    Andersson, Stefan; Erlingsson, Christen; Magnusson, Lennart; Hanson, Elizabeth

    2016-08-01

    Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs.

  18. Evaluation of a problem-solving (PS) techniques-based intervention for informal carers of patients with dementia receiving in-home care.

    PubMed

    Chiu, Mary; Pauley, Tim; Wesson, Virginia; Pushpakumar, Dunstan; Sadavoy, Joel

    2015-06-01

    The value of care provided by informal carers in Canada is estimated at $26 billion annually (Hollander et al., 2009). However, carers' needs are often overlooked, limiting their capacity to provide care. Problem-solving therapy (PST), a structured approach to problem solving (PS) and a core principle of the Reitman Centre CARERS Program, has been shown to alleviate emotional distress and improve carers' competence (Chiu et al., 2013). This study evaluated the effectiveness of problem-solving techniques-based intervention based on adapted PST methods, in enhancing carers' physical and emotional capacity to care for relatives with dementia living in the community. 56 carers were equally allocated to a problem-solving techniques-based intervention group or a control arm. Carers in the intervention group received three 1 hr visits by a care coordinator (CC) who had been given advanced training in PS techniques-based intervention. Coping, mastery, competence, burden, and perceived stress of the carers were evaluated at baseline and post-intervention using standardized assessment tools. An intention-to-treat analysis utilizing repeated measures ANOVA was performed on the data. Post-intervention measures completion rate was 82% and 92% for the intervention and control groups, respectively. Carers in the intervention group showed significantly improved task-oriented coping, mastery, and competence and significantly reduced emotion-oriented coping, burden and stress (p < 0.01-0.001). Control carers showed no change. PS techniques, when learned and delivered by CCs as a tool to coach carers in their day-to-day caregiving, improves carers' caregiving competence, coping, burden, and perceived stress. This may reduce dependence on primary, psychiatric, and institutional care. Results provide evidence that establishing effective partnerships between inter-professional clinicians in academic clinical health science centers, and community agencies can extend the reach of the

  19. Qualitative focus group study investigating experiences of accessing and engaging with social care services: perspectives of carers from diverse ethnic groups caring for stroke survivors.

    PubMed

    Greenwood, Nan; Holley, Jess; Ellmers, Theresa; Mein, Gill; Cloud, Geoffrey

    2016-01-29

    Informal carers, often family members, play a vital role in supporting stroke survivors with post-stroke disability. As populations age, numbers of carers overall and those from minority ethnic groups in particular, are rising. Carers from all ethnic groups, but especially those from black and minority ethnic groups frequently fail to access support services, making understanding their experiences important. The study therefore explored the experiences of carers of stroke survivors aged 45+ years from 5 ethnic groups in accessing and receiving social care services after hospital discharge. This qualitative study used 7 recorded focus groups with informal carers of stroke survivors. Data were analysed thematically focusing on similarities and differences between ethnic groups. Carers were recruited from voluntary sector organisations supporting carers, stroke survivors and black and minority ethnic groups in the UK. 41 carers from 5 ethnic groups (Asian Indian, Asian Pakistani, black African, black Caribbean, white British) participated in the focus groups. Several interconnected themes were identified including: the service gap between hospital discharge and home; carers as the best person to care and cultural aspects of caring and using services. Many themes were common to all the included ethnic groups but some related to specific groups. Across ethnic groups there were many similarities in the experiences of people caring for stroke survivors with complex, long-term care needs. Accessing services demands effort and persistence on carers' part. If carers believe services are unsatisfactory or that they, rather than formal services, should be providing support for stroke survivors, they are unlikely to persist in their efforts. Cultural and language differences add to the challenges black and minority ethnic group carers face. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

  20. Efficacy and experiences of telephone counselling for informal carers of people with dementia.

    PubMed

    Lins, Sabine; Hayder-Beichel, Daniela; Rücker, Gerta; Motschall, Edith; Antes, Gerd; Meyer, Gabriele; Langer, Gero

    2014-09-01

    Informal carers of people with dementia can suffer from depressive symptoms, emotional distress and other physiological, social and financial consequences. This review focuses on three main objectives:To:1) produce a quantitative review of the efficacy of telephone counselling for informal carers of people with dementia;2) synthesize qualitative studies to explore carers' experiences of receiving telephone counselling and counsellors' experiences of conducting telephone counselling; and3) integrate 1) and 2) to identify aspects of the intervention that are valued and work well, and those interventional components that should be improved or redesigned. The Cochrane Dementia and Cognitive Improvement Group's Specialized Register, The Cochrane Library, MEDLINE, MEDLINE in Process, EMBASE, CINAHL, PSYNDEX, PsycINFO, Web of Science, DIMDI databases, Springer database, Science direct and trial registers were searched on 3 May 2011 and updated on 25 February 2013. A Forward Citation search was conducted for included studies in Web of Science and Google Scholar. We used the Related Articles service of PubMed for included studies, contacted experts and hand-searched abstracts of five congresses. Randomised controlled trials (RCTs) or cross-over trials that compared telephone counselling for informal carers of people with dementia against no treatment, usual care or friendly calls for chatting were included evaluation of efficacy. Qualitative studies with qualitative methods of data collection and analysis were also included to address experiences with telephone counselling. Two authors independently screened articles for inclusion criteria, extracted data and assessed the quantitative trials with the Cochrane 'Risk of bias' tool and the qualitative studies with the Critical Appraisal Skills Program (CASP) tool. The authors conducted meta-analyses, but reported some results in narrative form due to clinical heterogeneity. The authors synthesised the qualitative data and

  1. Patient and carer needs following a cancer-related hospital admission: the importance of referral to the district nursing service.

    PubMed

    Wilson, Kate; Pateman, Brian; Beaver, Kinta; Luker, Karen A

    2002-05-01

    Despite 30 years of research attention, discharge planning and district nurse (DN) referral remain problematic and few cancer-related publications exist. With shorter hospitalizations, discharged cancer patients and their carers may experience unmet needs for assessment, information and support. Although DN referral might enable patient/carer needs to be met, the DN role lacks clarity. To investigate the needs of people with cancer, and their lay carers during discharge from hospital to home, and identify the role of DNs in meeting these needs. In this qualitative study, 71 pre- and postdischarge interviews were performed with cancer patients and (where possible) their carers. Predischarge interviews focused on expectations and postdischarge interviews on experiences of discharge and aftercare. Interview tapes were transcribed and analysed thematically. Interviewees anticipated few aftercare needs during predischarge interviews but described met and unmet needs during postdischarge interviews. Unmet needs of those referred and not referred to the district nursing service were similar. Patients and carers had unmet needs for psychological support related to nutrition. Carers, especially those not resident with and not related to patients, had informational needs. Even very elderly, ill and isolated patients felt that other people had greater needs than their own and many thought that DNs only performed physical tasks. All cancer patients discharged from hospital might be referred to a DN for ongoing assessment of needs. However, to ensure optimal results, the DN role needs to be clarified and public perceptions altered. Further research on psychological aspects of nutrition and the needs of carers not resident with/not related to patients is necessary.

  2. 'If it weren't for me…': perspectives of family carers of older people receiving professional care.

    PubMed

    Carlsen, Benedicte; Lundberg, Kjetil

    2017-05-05

    In the Scandinavian countries and elsewhere, family care is important as a complement for older people in the professional care system. Better understanding of this role could lead to better cooperation between professionals and family carers and better use of family carers as a resource in care for older people. The aim of this study was to explore experiences of the role of family carers of older people in need of services and therefore to increase our understanding of this role. The study was designed as a qualitative interview study. In 2014 and 2015, we conducted semistructured interviews with a varied sample of 16 family carers of older people in both urban and rural locations in Norway. Interviews were transcribed and analysed thematically. The way the caregiving role was enacted varied greatly between the family carers in this study, but they all conveyed mixed feelings regarding their role. They saw caring for their relative both as a duty and a strain, as well as a choice and a meaningful task. One reason for their engagement was perceived deficiencies in professional care services. Family carers thus felt they made a difference to the older person's well-being and health, and more so if this role was acknowledged by professional caregivers. This study suggests that in spite of or perhaps even because of feelings of obligation and strain, family care is experienced as highly meaningful. However, it seems important that family carers receive explicit appreciation from professional health or care staff. © 2017 Nordic College of Caring Science.

  3. A review of patient and carer participation and the use of qualitative research in the development of core outcome sets.

    PubMed

    Jones, Janet E; Jones, Laura L; Keeley, Thomas J H; Calvert, Melanie J; Mathers, Jonathan

    2017-01-01

    To be meaningful, a core outcome set (COS) should be relevant to all stakeholders including patients and carers. This review aimed to explore the methods by which patients and carers have been included as participants in COS development exercises and, in particular, the use and reporting of qualitative methods. In August 2015, a search of the Core Outcomes Measures in Effectiveness Trials (COMET) database was undertaken to identify papers involving patients and carers in COS development. Data were extracted to identify the data collection methods used in COS development, the number of health professionals, patients and carers participating in these, and the reported details of qualitative research undertaken. Fifty-nine papers reporting patient and carer participation were included in the review, ten of which reported using qualitative methods. Although patients and carers participated in outcome elicitation for inclusion in COS processes, health professionals tended to dominate the prioritisation exercises. Of the ten qualitative papers, only three were reported as a clear pre-designed part of a COS process. Qualitative data were collected using interviews, focus groups or a combination of these. None of the qualitative papers reported an underpinning methodological framework and details regarding data saturation, reflexivity and resource use associated with data collection were often poorly reported. Five papers reported difficulty in achieving a diverse sample of participants and two reported that a large and varied range of outcomes were often identified by participants making subsequent rating and ranking difficult. Consideration of the best way to include patients and carers throughout the COS development process is needed. Additionally, further work is required to assess the potential role of qualitative methods in COS, to explore the knowledge produced by different qualitative data collection methods, and to evaluate the time and resources required to

  4. The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis.

    PubMed

    Noble, Helen; Price, Jayne E; Porter, Sam

    2015-04-01

    To draw out the similar complexities faced by staff around truth-telling in a children's and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling. Policy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff. Secondary analysis of data using a supra-analysis design to identify commonality of experiences. Secondary 'supra-analysis' was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative children's and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies. Staff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence. Both children's and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff. There remains a powerful death-denying culture in many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution. © 2014 John Wiley & Sons Ltd.

  5. A potential model for the first all Wales mental health service user and carer-led research group.

    PubMed

    Wilson, C; Fothergill, A; Rees, H

    2010-02-01

    This paper will inform mental health service users and carers on how a University in Wales established a service user and carer-led research group. * The group's primary aim will be to undertake its own service user and carer-led research projects. * Mental health service users have undergone empowerment and research training at a University in Wales. This is an important initiative because it is the first service user and carer-led research group in Wales. * This paper is co-authored by a mental health service user and includes transcripts of service users' stories written in their words. Abstract Service user and carer involvement in research has been gaining momentum in recent years. However, this involvement to date has primarily been as research respondents or 'subjects' in research studies. A group of mental health service users at a University in Wales underwent empowerment and research training to enable them to become active participants in the research process; this training was a necessary step to equip mental health service users with the skills to become independent researchers and to carry out service user-led research. We included transcripts from mental health service users on their views of the empowerment and research training received. We are not reporting, in this paper, on the findings from a research study rather it aims to inform readers how a service user and carer-led research group has been established in Wales. The group has two purposes: (1) to train service users in research methodologies, and thus for them to gain essential research skills; and (2) to undertake their own service user and carer-led research projects thereby implementing the research skills they have acquired from the training. The latter is a primary aim of the group; a future paper will report on its development.

  6. Costs of formal and informal care at home for people with dementia: 'Expert panel' opinions from staff and informal carers.

    PubMed

    Giebel, Clarissa M; Davies, Susan; Clarkson, Paul; Sutcliffe, Caroline; Challis, David

    2016-08-22

    Effective home support in dementia is key in delaying nursing home admission. However, home support is frequently not tailored to the individual needs of people with dementia. Staff allocating home support services may not identify important care needs, which only be recognised by informal carers. The purpose of this study was to explore the balance of informal and formal home support and their associated costs from the perspectives of both informal carers and paid staff. Five case vignettes of people with dementia were designed based on an existing English data set from a European study into transition into long-term care (the RightTimePlaceCare programme), representing 42 per cent of the English sample. In total, 14 informal carers and 14 paid staff were consulted in separate groups, as expert panels, regarding their recommendations for home care services for each vignette. Care recommendations of carers and staff were costed based on nationally available unit costs and compared. Informal carers allocated fewer hours of care than staff. Personal and domestic home care and day care centres were the most frequently recommended formal services by both groups, and some vignettes of people with dementia were recommended for care home admission. The ratio of costs of informal versus formal support was relatively equal for paid staff, yet unbalanced from the perspectives of informal carers with a greater proportion of formal care costs. Recommendations from this study can help shape dementia care to be more tailored to the individual needs of people with dementia and their carers. © The Author(s) 2016.

  7. A review of patient and carer participation and the use of qualitative research in the development of core outcome sets

    PubMed Central

    2017-01-01

    Background To be meaningful, a core outcome set (COS) should be relevant to all stakeholders including patients and carers. This review aimed to explore the methods by which patients and carers have been included as participants in COS development exercises and, in particular, the use and reporting of qualitative methods. Methods In August 2015, a search of the Core Outcomes Measures in Effectiveness Trials (COMET) database was undertaken to identify papers involving patients and carers in COS development. Data were extracted to identify the data collection methods used in COS development, the number of health professionals, patients and carers participating in these, and the reported details of qualitative research undertaken. Results Fifty-nine papers reporting patient and carer participation were included in the review, ten of which reported using qualitative methods. Although patients and carers participated in outcome elicitation for inclusion in COS processes, health professionals tended to dominate the prioritisation exercises. Of the ten qualitative papers, only three were reported as a clear pre-designed part of a COS process. Qualitative data were collected using interviews, focus groups or a combination of these. None of the qualitative papers reported an underpinning methodological framework and details regarding data saturation, reflexivity and resource use associated with data collection were often poorly reported. Five papers reported difficulty in achieving a diverse sample of participants and two reported that a large and varied range of outcomes were often identified by participants making subsequent rating and ranking difficult. Conclusions Consideration of the best way to include patients and carers throughout the COS development process is needed. Additionally, further work is required to assess the potential role of qualitative methods in COS, to explore the knowledge produced by different qualitative data collection methods, and to evaluate

  8. The use of carer assisted adherence therapy for people with Parkinson's disease and their carers (CAAT-PARK): study protocol for a randomised controlled trial

    PubMed Central

    2011-01-01

    Background Pharmacological intervention is essential for managing the symptoms of Parkinson's disease. Adherence to medication regimens however is a major problem. Poor adherence leads to significant motor deterioration and inadequate symptom control. This results in poor quality of life. Whilst interventions to improve medication adherence have shown considerable benefit in other chronic conditions, the efficacy of such treatments in Parkinson's disease is less well researched. Many people with Parkinson's disease require substantial support from spouse/caregivers. This often extends to medication taking. Consequently, spouse/caregiver's support for timely medication management is paramount. We aim to investigate the benefit of a novel intervention, Carer Assisted Adherence Therapy, for improving medication adherence and quality of life in people with Parkinson's disease. Adherence therapy may help to optimise the efficacy of anti-parkinsonian agents, subsequently improving clinical outcomes. Methods/Design A parallel, randomised controlled trial will be conducted to investigate whether carer assisted adherence therapy is effective for improving medication adherence and quality of life. We aim to recruit 40 patient/carer pairs into each group. Participants will be randomly assigned by the Clinical Research Trials Unit at the University of East Anglia. Adherence therapy is a brief cognitive-behavioural approach aimed at facilitating a process of shared decision making. The central theory is that when patients make shared choices with a professional they are more likely to continue with those choices because they are personally owned and meaningful. Outcomes will be rates of adherence and quality of life, determined by the Morisky Medication Adherence Scale-4 and the Parkinson's disease Questionnaire-39 respectively. Assessments will take place post randomisation, immediately post intervention and 12-weeks post randomisation. Primary outcomes are adherence and

  9. Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia?

    PubMed

    Harrison Dening, Karen; King, Michael; Jones, Louise; Vickestaff, Victoria; Sampson, Elizabeth L

    2016-01-01

    When a person with dementia (PWD) has lost the ability to make treatment decisions, clinicians often rely on family carers to know and articulate these preferences with assumed accuracy. This study used the Life Support Preferences Questionnaire (LSPQ) to explore whether family carers' choices show agreement with the end of life care preferences of the person with dementia for whom they care and what factors influence this. A cross-sectional study interviewing 60 dyads (a person with early dementia and preserved capacity and their family carer) each completing a modified LSPQ. We assessed how closely carers' choices resembled the PWD's preferences for treatment in three proposed health states: the here and now; severe stroke with coma; terminal cancer. Agreement between the PWD and their family carer responses was assessed using Kappa and Prevalence-Adjusted Bias-Adjusted Kappa (PABAK) statistics. We examined whether carer burden and distress, and relationship quality, influenced agreement. In interviews PWD were able to indicate their treatment preferences across all three scenarios. In the here-and-now most wanted antibiotics (98%), fewer cardio-pulmonary resuscitation (CPR) (50%) and tube feeding (47%). In severe stroke and coma antibiotics remained the more preferred treatment (88%), followed by CPR (57%) and tube feeding (30%). In advanced cancer PWD expressed lower preferences for all treatments (antibiotics 68%; CPR 50%; tube feeding 37%). Carers' choices were similar to the PWDs' preferences in the here-and-now (71% (k = 0.03; PABAK = 0.4) with less agreement for future hypothetical health states. In severe stroke and coma carers tended wrongly to suggest that the PWD preferred more intervention (antibiotic, 67%; k = -0.022; PABAK = -0.60; CPR, 73%; k = 0.20; PABAK = -0.20, tube feeding, 66%; k = 0.25; PABAK = -0.12). In advanced cancer the agreement between PWD and carers was low (antibiotics; k = -0.03; PABAK = -0.52; CPR, k = -0.07; PABAK = -0.45; tube

  10. Network reliability

    NASA Technical Reports Server (NTRS)

    Johnson, Marjory J.

    1985-01-01

    Network control (or network management) functions are essential for efficient and reliable operation of a network. Some control functions are currently included as part of the Open System Interconnection model. For local area networks, it is widely recognized that there is a need for additional control functions, including fault isolation functions, monitoring functions, and configuration functions. These functions can be implemented in either a central or distributed manner. The Fiber Distributed Data Interface Medium Access Control and Station Management protocols provide an example of distributed implementation. Relative information is presented here in outline form.

  11. Reliability Prediction

    NASA Technical Reports Server (NTRS)

    1993-01-01

    RELAV, a NASA-developed computer program, enables Systems Control Technology, Inc. (SCT) to predict performance of aircraft subsystems. RELAV provides a system level evaluation of a technology. Systems, the mechanism of a landing gear for example, are first described as a set of components performing a specific function. RELAV analyzes the total system and the individual subsystem probabilities to predict success probability, and reliability. This information is then translated into operational support and maintenance requirements. SCT provides research and development services in support of government contracts.

  12. Mental health of carers of children affected by HIV attending community-based programmes in South Africa and Malawi.

    PubMed

    Skeen, Sarah; Tomlinson, Mark; Macedo, Ana; Croome, Natasha; Sherr, Lorraine

    2014-01-01

    There is strong evidence that both adults and children infected with and affected by HIV have high levels of mental health burden. Yet there have been few studies investigating carer mental health outcomes in the context of HIV in Malawi and South Africa. The objective of this study was to assess the mental health of carers of children affected by HIV as a part of the Child Community Care study, which aims to generate evidence on the effectiveness of community-based organisation (CBO) services to improve child outcomes. In a cross-sectional study, we interviewed 952 carers of children (aged 4-13 years) attending 28 randomly selected CBOs funded by 11 major donors in South Africa and Malawi. Psychological morbidity was measured using the Shona Symptom Questionnaire and suicidal ideation was measured using an item from the Patient Health Questionnaire. Carers were asked about care-seeking for emotional problems. Overall, 28% of carers scored above the clinical cut-off for current psychological morbidity and 12.2% reported suicidal ideation. We used logistic regression models to test factors associated with poor outcomes. Household unemployment, living with a sick family member and perceived lack of support from the community were associated with both psychological morbidity and suicidal ideation in carers. Reported child food insecurity was also associated with psychological morbidity. In addition, carers living in South Africa were more likely to present with psychological morbidity and suicidal ideation than carers in Malawi. Rates of help-seeking for mental health problems were low. Carers of children affected by HIV are at risk for mental health problems as a result of HIV, socio-economic, care-giving and community factors. We call for increased recognition of the potential role of CBOs in providing mental health care and support for families as a means to improve equity in mental health care. Specifically, we highlight the need for increased training and

  13. Mental health of carers of children affected by HIV attending community-based programmes in South Africa and Malawi

    PubMed Central

    Skeen, Sarah; Tomlinson, Mark; Macedo, Ana; Croome, Natasha; Sherr, Lorraine

    2015-01-01

    There is strong evidence that both adults and children infected with and affected by HIV have high levels of mental health burden. Yet there have been few studies investigating carer mental health outcomes in the context of HIV in Malawi and South Africa. The objective of this study was to assess the mental health of carers of children affected by HIV as a part of the Child Community Care study, which aims to generate evidence on the effectiveness of community-based organisation (CBO) services to improve child outcomes. In a cross sectional study, we interviewed 952 carers of children (aged 4 to 13 years) attending 28 randomly selected CBOs funded by 11 major donors in South Africa and Malawi. Psychological morbidity was measured using the Shona Symptom Questionnaire (SSQ) and suicidal ideation was measured using an item from the Patient Health Questionnaire (PHQ). Carers were asked about care-seeking for emotional problems. Overall, 28% of carers scored above the clinical cut-off for current psychological morbidity and 12.2% reported suicidal ideation. We used logistic regression models to test factors associated with poor outcomes. Household unemployment, living with a sick family member, and perceived lack of support from the community were associated with both psychological morbidity and suicidal ideation in carers. Reported child food insecurity was also associated with psychological morbidity. In addition, carers living in South Africa were more likely to present with psychological morbidity and suicidal ideation than carers in Malawi. Rates of help-seeking for mental health problems were low. Carers of children affected by HIV are at risk for mental health problems as a result of HIV, socio-economic, care-giving and community factors. We call for increased recognition of the potential role of CBOs in providing mental health care and support for families as a means to improve equity in mental health care. Specifically, we highlight the need for increased

  14. Factors influencing indirect speech and language therapy interventions for adults with learning disabilities: the perceptions of carers and therapists.

    PubMed

    Graves, Judy

    2007-03-01

    The working context for speech and language therapists (SLTs) delivering interventions to adults who have a learning disability has changed following the reorganization of care provision from hospitals to the community. Consequently, SLTs often deliver their care within a social model of disability through indirect intervention in collaboration with carers. However, there has been little research into how this approach works in practice. To gain insight into the working context by identifying the key factors that influence indirect SLT interventions as perceived by SLTs and by paid carers from a range of service providers. To explore the implications of the results for the delivery of indirect SLT interventions and provide direction for further research. Semi-structured interviews were used to collect data from an opportunistic sample of five SLTs working in Community Learning Disability Teams (CLDTs) and 12 carers from residential and day care services who had had experience of working with SLTs. The data were analysed inductively using a grounded theory framework. Two broad themes emerged for SLTs: roles and expectations, and changing carer behaviour through training. The key themes for carers were roles and values, awareness of communication needs, and motivation and opportunity to implement interventions. Four broad factors are suggested as having the potential to influence indirect interventions: diversity in the working context; possible conflict between the guiding values of SLTs and carers, particularly residential carers; collaboration and support for implementation; and SLT doubts about the effectiveness of formal carer communication training. The results add to the evidence that the delivery of indirect speech and language therapy interventions to people with learning disabilities is a complex activity demanding specialist skills from SLTs. The findings suggest that these should include expertise in professional collaborative and relational skills, and

  15. Improving family carers' experiences of support at the end of life by enhancing communication: an action research study.

    PubMed

    Dosser, Isabel; Kennedy, Catriona

    2014-12-01

    This paper builds on findings from phase one of a participatory action research study, which investigated support for family carers at the end of life in an acute hospital setting in Scotland, UK ( Dosser and Kennedy, 2012 ). The research presented here is the second phase of the participatory action research study, in which nursing staff from an acute hospital ward are involved in ongoing analysis of data and ideas guided by action cycles and reflection. Two key change initiatives are reported; improving nurses' communication skills and improving the environment for family carers of loved ones at the end of life within the acute hospital setting. To address these points, nurses were enrolled on a communications skills course, and a new room for family carers was integrated into the hospital. Data were analysed from interviews and questionnaires with the nurses, and from insights gathered in a reflective diary taken by the researcher. The changes implemented improved the confidence of participants in communicating with carers as well as patients and colleagues. The findings highlight practical strategies and communication issues that can potentially impact on the grief experience of family carers, such as having a safe space nearby to rest in private, away from the bedside.

  16. Understanding patient and relative/carer experience of hip fracture in acute care: A qualitative study protocol.

    PubMed

    Saletti-Cuesta, Lorena; Tutton, Elizabeth; Langstaff, Debbie; Willett, Keith

    2017-05-01

    This paper presents a qualitative study protocol focusing on older peoples' experience of recovery in acute care following hip fracture and also the experiences of their family or informal carers. There is limited evidence regarding older people and their relatives'/carers' experiences of recovery in acute care. The study had two research questions. First what is the experience of older people who have suffered a fractured hip and secondly what is the relatives'/carers' experience of being alongside a person who has suffered a fractured hip? The methodology chosen is phenomenology using the methods of interviewing and participant observation. It is planned to recruit a purposive sample of up to 40 patients including those with memory loss who have suffered a fractured hip, and up to 30 of their relative/carers, and up to 20 staff may choose to take part in the observation sessions. Analysis will be through drawing out units of meaning, bringing them together to form categories and themes of experience. This study will extend knowledge by exploring what is important to patients and their relatives/carers in the early phase of recovery. Practice based principles that can be integrated into the hip fracture pathway and enhance future care will be developed from the study findings. Crown Copyright © 2016. Published by Elsevier Ltd. All rights reserved.

  17. Needs-gap analysis on culturally and linguistically diverse grandparent carers' 'hidden issues': a quality improvement project.

    PubMed

    Sepulveda, Mercedes; Henderson, Saras; Farrell, Dana; Heuft, Gaby

    2016-02-01

    In Australia, a significant number of culturally and linguistically diverse (CALD) grandparents are sole carers for their grandchildren. Available information on the impact of caring on CALD grandparents and the ability of service providers to respond to their needs is limited. Our needs-gap analysis quality improvement project aimed to uncover 'hidden issues' for CALD grandparent carers so that services can be improved. One hundred service providers, such as community and aged-care services, child and/or grandparent support services and CALD-specific services, were approached using six structured questions. Six consultative forums on the caring role, issues encountered, and what needed to be done, were conducted with African, Asian, Spanish, Middle Eastern, European, Pacific Island and Maori grandparent carers in Queensland. The data were qualitatively analysed. Six themes emerged: 1) service provider and grandparent carer perception that there was limited research on CALD grandparents; 2) inadequate legal and financial support; 3) barriers to accessing information; 4) lack of childcare options; 5) transport difficulties; and 6) inadequate technological skills. Our findings provide insight to health service providers on the 'hidden issues' so that they can better assist CALD grandparent carers by improving access to relevant information, referrals and resources.

  18. Exploring experiences of physical activity among people with Alzheimer's disease and their spouse carers: a qualitative study.

    PubMed

    Malthouse, R; Fox, F

    2014-06-01

    To improve understanding about the barriers and facilitators to physical activity for people with Alzheimer's disease and their spouse carers, and to consider the development of activity interventions that would be acceptable, sustainable and feasible for both groups. A qualitative approach, using semi-structured interviews, facilitated exploration of physical activity in a small group of people with Alzheimer's disease and their spouse carers. Participants were recruited from one memory clinic in South West England. Potential participants were identified by clinical psychologists at the memory clinic and were given information about participating in the research. Five people with Alzheimer's disease and their spouse carers were subsequently recruited for semi-structured interviews, which took place at the memory clinic. Interviews were audio-recorded and transcribed verbatim. Qualitative data were analysed using thematic analysis. Three major themes have been presented. The findings illustrate the complex interplay between the overarching themes 'self', 'others' and 'couple' that affect physical activity for both people with Alzheimer's disease and their spouse carers, and which are linked to the progression of dementia. An individually tailored approach for couples, which values the role of the carer and accounts for the progressive and changing nature of dementia, should be a guiding principle for intervention design. Copyright © 2013 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved.

  19. [Psychosocial strategies to strengthen the coping with Parkinson's disease: Perspectives from patients, family carers and healthcare professionals].

    PubMed

    Navarta-Sánchez, María Victoria; Caparrós, Neus; Ursúa Sesma, María Eugenia; Díaz de Cerio Ayesa, Sara; Riverol, Mario; Portillo, Mari Carmen

    2017-04-01

    To explore the main psychosocial aspects which have influence on the coping with the disease in patients with Parkinson's disease (PD) and their family carers. An exploratory qualitative study which constitutes the second phase of a mixed-methods project. Multicenter study carried out in Navarre in 2014 in collaboration with Primary Care of Navarre Service of Health-Osasunbidea, Clínica Universidad de Navarra and Navarre Association of Parkinson's patients. A total of 21 participants: 9 people with PD, 7 family carers and 5 healthcare professionals. Participants were selected through purposive sampling. Focus groups were conducted until a suitable saturation data was achieved. Transcriptions were analysed by 2 researchers through a content analysis. Three aspects that affected how patients and family carers coped with PD were identified: features of the clinical practice; family environment, and disease's acceptance. Taking account of these findings, some strategies which could foster these aspects from primary healthcare are suggested in order to improve the adjustment to the disease in patients and family carers. The healthcare in people with PD should have an integral approach that tackle the symptoms control in patients and also deal with psychosocial aspects that influence on the coping with the disease, in patients and family carers. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

  20. Unwillingness to be violated: carers' experiences of caring for a person acting in a disturbing manner. An interview study.

    PubMed

    Hellzen, O; Asplund, K; Sandman, P O; Norberg, A

    1999-11-01

    Carers working in psychiatric care are sometimes exposed to insane, unpredictable and violent actions. In rare cases a patient appears to be resistant to all forms of pharmacological treatment. Fifteen carers (four registered nurses, 11 enrolled nurses) on a psychiatric ward in Sweden were interviewed about their experiences when caring for a person who acted in a disturbing manner. Narrative interviews were conducted and interpreted using a method inspired by Ricoeur. Four themes were formulated which describe the carers' uncertainty about the future, their inability to interpret the patient's disturbing behaviour and their own overall feeling of meaninglessness. The carers were of the opinion that the patient had the power and ruled the ward, which led to them feeling they were subjugated victims. The interviews also revealed the carers' recognition of forbidden feelings and actions and unknown negative sides. These results were interpreted and reflected on in the light of an ethical framework in order to achieve a deeper understanding of the text. This paper shows that an ethical perspective is important when searching for the meaning of caring for patients acting in a disturbing manner. The study raises the question: 'Is it possible to establish good when evil has dominion?'.

  1. Communication changes following non-glottic head and neck cancer management: The perspectives of survivors and carers.

    PubMed

    Nund, Rebecca L; Rumbach, Anna F; Debattista, Bridget C; Goodrow, Martha N T; Johnson, Kori A; Tupling, Laura N; Scarinci, Nerina A; Cartmill, Bena; Ward, Elizabeth C; Porceddu, Sandro V

    2015-06-01

    Head and neck cancer (HNC) survivors may experience functional changes to their voice, speech and hearing following curative chemoradiotherapy. However, few studies have explored the impact of living with such changes from the perspective of the HNC survivor and their carer. The current study employed a person-centred approach to explore the lived experience of communication changes following chemoradiotherapy treatment for HNC from the perspective of survivors and carers. Participants included 14 survivors with non-glottic HNC and nine carers. All participants took part in in-depth interviews where they were encouraged to describe their experiences of living with and adjusting to communication changes following treatment. Interviews were analysed as a single data set. Four themes emerged including: (1) impairments in communication sub-systems; (2) the challenges of communicating in everyday life; (3) broad ranging effects of communication changes; and (4) adaptations as a result of communication changes. These data confirm that communication changes following chemoradiotherapy have potentially negative psychosocial impacts on both the HNC survivor and their carer. Clinicians should consider the impact of communication changes on the life of the HNC survivor and their carer and provide adequate and timely education and management to address the needs of this population.

  2. Information and communication technologies for informal carers and paid assistants: benefits from micro-, meso-, and macro-levels.

    PubMed

    Carretero, Stephanie; Stewart, James; Centeno, Clara

    The aim of this study was to explore the benefits of information and communication technologies (ICT)-based services for informal carers and paid assistants of older people living in the community. We cross-case analysed the effects of twelve initiatives in the EU, the USA and Canada, based on their individual analysis documented through interviews with promoters and a literature review. We carried out the cross-case analysis following a variables-oriented strategy on seven dimensions of impact at micro-, meso- and macro-levels: the quality of life of informal carers and paid assistants, quality of life of care recipients, quality of care, care efficiency and sustainability, acceptability, and infrastructure and accessibility. ICT-based services for informal carers and paid assistants improve the quality of life of older people and their carers and access to qualified care. They also generate savings which contribute to the sustainability of the care systems. These findings constitute a first look at the benefits of the use of ICT-based services for informal carers and paid assistants. Nevertheless, more research using experimental methods is needed to demonstrate the impact of these ICT-based services at meso- and macro-levels. This would help to support policy-makers to deploy these technologies for long-term care delivery.

  3. Family carers' experiences of receiving the news of a diagnosis of Motor Neurone Disease: A national survey.

    PubMed

    Aoun, Samar M; Breen, Lauren J; Oliver, David; Henderson, Robert D; Edis, Robert; O'Connor, Margaret; Howting, Denise; Harris, Rodney; Birks, Carol

    2017-01-15

    Family carers have a central role in the care and support of people with MND and face the challenges of the disease from diagnosis to progression and the multiple losses of MND, but their support needs are often neglected. This study aimed to investigate the experiences of family carers at the time of diagnosis and their satisfaction with receiving the news. An anonymous postal survey was facilitated by all MND Associations in Australia (2014) and 190 family carers completed the questionnaire. The questions centred on the SPIKES protocol for communicating bad news. Two-thirds of family carers rated the skills of their neurologists as above average and were satisfied with the delivery of the diagnosis, in terms of having a significantly longer consultation time, the neurologist being warm and caring, satisfaction with the amount and content of information they received and relevant supports, and a plan for following up support. Conversely those who rated the neurologist's skills as below average commented on the difficulties they encountered and the long term emotional stress engendered by poor communication. The study emphasises previous research that suggested that neurologists may require education and training in communicating the diagnosis and this should include family carers as a vital member in MND care. Copyright © 2016 Elsevier B.V. All rights reserved.

  4. Dysexecutive symptoms and carer strain following acquired brain injury: Changes measured before and after holistic neuropsychological rehabilitation.

    PubMed

    Goodwin, Rachel A; Lincoln, Nadina B; Bateman, Andrew

    2016-06-18

    Following acquired brain injury (ABI), deficits in executive functioning (EF) are common. As a result many brain-injured patients encounter problems in every-day functioning, and their families experience significant strain. Previous research has documented the benefits of cognitive rehabilitation for executive dysfunction, and rehabilitation programmes designed to ameliorate functional problems associated with ABI. This study primarily aims to evaluate whether a neuropsychological rehabilitation programme reduces reported symptoms of everyday dysexecutive behaviour and carer strain. In this study 66 ABI outpatients attended comprehensive holistic neuropsychological rehabilitation programme. A repeated-measures design was employed to determine the effect of rehabilitation on EF and carer strain, as part of a service evaluation. Outcome measures comprised the dysexecutive questionnaire (DEX/DEX-I) and carer strain index (CSI), applied pre- and post-rehabilitation. Results indicate rehabilitation benefited clients and carers in 5 of 6 DEX/DEX-I subscales, and 2 of 3 CSI subscales, (p < 0.05). An effect of aetiology on rehabilitation was found on the metacognitive scale of the DEX-I. Therefore, this study supports a comprehensive holistic neuropsychological rehabilitation programme as effective in reducing reported symptoms of dysexecutive behaviour and carer strain following ABI.

  5. Six key topics informal carers of patients with breathlessness in advanced disease want to learn about and why: MRC phase I study to inform an educational intervention.

    PubMed

    Farquhar, Morag; Penfold, Clarissa; Benson, John; Lovick, Roberta; Mahadeva, Ravi; Howson, Sophie; Burkin, Julie; Booth, Sara; Gilligan, David; Todd, Christopher; Ewing, Gail

    2017-01-01

    Breathlessness is a common symptom of advanced disease placing a huge burden on patients, health systems and informal carers (families and friends providing daily help and support). It causes distress and isolation. Carers provide complex personal, practical and emotional support yet often feel ill-prepared to care. They lack knowledge and confidence in their caring role. The need to educate carers and families about breathlessness is established, yet we lack robustly developed carer-targeted educational interventions to meet their needs. We conducted a qualitative interview study with twenty five purposively-sampled patient-carer dyads living with breathlessness in advanced disease (half living with advanced cancer and half with advanced chronic obstructive pulmonary disease (COPD). We sought to identify carers' educational needs (including what they wanted to learn about) and explore differences by diagnostic group in order to inform an educational intervention for carers of patients with breathlessness in advanced disease. There was a strong desire among carers for an educational intervention on breathlessness. Six key topics emerged as salient for them: 1) understanding breathlessness, 2) managing anxiety, panic and breathlessness, 3) managing infections, 4) keeping active, 5) living positively and 6) knowing what to expect in the future. A cross-cutting theme was relationship management: there were tensions within dyads resulting from mismatched expectations related to most topics. Carers felt that knowledge-gains would not only help them to support the patient better, but also help them to manage their own frustrations, anxieties, and quality of life. Different drivers for education need were identified by diagnostic group, possibly related to differences in caring role duration and resulting impacts. Meeting the educational needs of carers requires robustly developed and evaluated interventions. This study provides the evidence-base for the content of an

  6. Qualitative focus group study investigating experiences of accessing and engaging with social care services: perspectives of carers from diverse ethnic groups caring for stroke survivors

    PubMed Central

    Greenwood, Nan; Holley, Jess; Ellmers, Theresa; Mein, Gill; Cloud, Geoffrey

    2016-01-01

    Objectives Informal carers, often family members, play a vital role in supporting stroke survivors with post-stroke disability. As populations age, numbers of carers overall and those from minority ethnic groups in particular, are rising. Carers from all ethnic groups, but especially those from black and minority ethnic groups frequently fail to access support services, making understanding their experiences important. The study therefore explored the experiences of carers of stroke survivors aged 45+ years from 5 ethnic groups in accessing and receiving social care services after hospital discharge. Design This qualitative study used 7 recorded focus groups with informal carers of stroke survivors. Data were analysed thematically focusing on similarities and differences between ethnic groups. Setting Carers were recruited from voluntary sector organisations supporting carers, stroke survivors and black and minority ethnic groups in the UK. Participants 41 carers from 5 ethnic groups (Asian Indian, Asian Pakistani, black African, black Caribbean, white British) participated in the focus groups. Results Several interconnected themes were identified including: the service gap between hospital discharge and home; carers as the best person to care and cultural aspects of caring and using services. Many themes were common to all the included ethnic groups but some related to specific groups. Conclusions Across ethnic groups there were many similarities in the experiences of people caring for stroke survivors with complex, long-term care needs. Accessing services demands effort and persistence on carers’ part. If carers believe services are unsatisfactory or that they, rather than formal services, should be providing support for stroke survivors, they are unlikely to persist in their efforts. Cultural and language differences add to the challenges black and minority ethnic group carers face. PMID:26826148

  7. The place for emotions in professional carers' thinking: reflections on two cases.

    PubMed

    Koren, E

    2010-12-01

    How do carers know what is right for their patient? What can they do further to relying on the two pillars of knowledge and ethics? Knowledge foregrounds rational decision-making based on scientific evidence. It allows cost-benefit rationalization and the choice of the best feasible objective. The steady advance of medical science drives responsible carers to keep their knowledge and skills up-to-date. Bioethics grants primary attention to the prevention of causing harm in general, to pursuant of patients' subjective wellbeing and to allow the latter enjoy their autonomy and to guarantee them the sense of justice. There are, however, cases where these values collide and any care decision violates one principle or another. How are carers expected to act then? This article concerns the choices made by carers, as presented and discussed in two cases. These cases deal with a clash between two principles: parenthood vs. fertility, religious rite vs. social affiliation. This class has generated an ethical dilemma. In each case carers try to justify their choices by expert knowledge and other ethical values, but later reflection reveals that the predominant element in 'solving' these dilemmas was "emotions." Professional training submits that: 'Set aside feelings in order to keep your thinking 'straight.' However, reality proves this simply infeasible. The more complex the medical-ethical situation, it is more likely that "emotions" take over. We have no choice as responsible carers but to allow our emotions the status of a factor of influence in their own right. Nowadays, a basic medical training for doctors and nurses offers an integrated body of knowledge and therapeutic skills. In addition, trainees are introduced to bioethics, supposedly sufficient to guide their future steps in their chosen profession. But how does this training in fact shape their future ethical conduct, if at all? How does it affect their ability to maintain ethical responsibility throughout

  8. Interprofessional education in the care of people diagnosed with dementia and their carers: a systematic review.

    PubMed

    Jackson, Marcus; Pelone, Ferruccio; Reeves, Scott; Hassenkamp, Anne Marie; Emery, Claire; Titmarsh, Kumud; Greenwood, Nan

    2016-08-16

    This systematic review is linked to the multifaceted social, economic and personal challenges of dementia and the international recognition of the value of interprofessional education (IPE) and its influence on health and social care outcomes. This review therefore aimed to identify, describe and evaluate the impact of IPE interventions on health and social care practitioners (prequalification and postqualification) understanding of dementia, the quality of care for people with dementia and support for their carers. Following PRISMA guidelines, 9 databases were searched (MEDLINE, EMBASE, The Cochrane Library, PsycINFO, CINAHL Plus, Applied Social Sciences Index and Abstracts, Healthcare Management Information Consortium, ERIC and British Education Index). Narrative analysis of the findings was undertaken. Systematic review. 6 studies meeting the inclusion criteria were identified. The majority of studies were conducted in North America. Participants in 4 studies were health and social care practitioners caring for people with dementia, whereas the remaining studies focused on training graduate or undergraduate students. Diverse IPE activities with varying content, delivery mode and duration were reported. Although some studies reported more positive attitudes to interprofessional working as a result of the interventions, none reported benefits to patients or carers. The quality of the included studies varied. Overall, the evidence for the reported outcomes was considered weak. This review identified 6 studies describing IPE interventions intended to improve collaborative knowledge, skills, interprofessional practice and organisational awareness of dementia and dementia care. The small number of studies, their varied nature, scope and settings combined with poor quality of evidence limits our understanding of the effectiveness of IPE on the care and support of people with dementia and their carers. Further research is required to develop the evidence base and

  9. Interprofessional education in the care of people diagnosed with dementia and their carers: a systematic review

    PubMed Central

    Jackson, Marcus; Pelone, Ferruccio; Reeves, Scott; Hassenkamp, Anne Marie; Emery, Claire; Titmarsh, Kumud; Greenwood, Nan

    2016-01-01

    Objectives This systematic review is linked to the multifaceted social, economic and personal challenges of dementia and the international recognition of the value of interprofessional education (IPE) and its influence on health and social care outcomes. This review therefore aimed to identify, describe and evaluate the impact of IPE interventions on health and social care practitioners (prequalification and postqualification) understanding of dementia, the quality of care for people with dementia and support for their carers. Methods Following PRISMA guidelines, 9 databases were searched (MEDLINE, EMBASE, The Cochrane Library, PsycINFO, CINAHL Plus, Applied Social Sciences Index and Abstracts, Healthcare Management Information Consortium, ERIC and British Education Index). Narrative analysis of the findings was undertaken. Design Systematic review. Results 6 studies meeting the inclusion criteria were identified. The majority of studies were conducted in North America. Participants in 4 studies were health and social care practitioners caring for people with dementia, whereas the remaining studies focused on training graduate or undergraduate students. Diverse IPE activities with varying content, delivery mode and duration were reported. Although some studies reported more positive attitudes to interprofessional working as a result of the interventions, none reported benefits to patients or carers. The quality of the included studies varied. Overall, the evidence for the reported outcomes was considered weak. Conclusions This review identified 6 studies describing IPE interventions intended to improve collaborative knowledge, skills, interprofessional practice and organisational awareness of dementia and dementia care. The small number of studies, their varied nature, scope and settings combined with poor quality of evidence limits our understanding of the effectiveness of IPE on the care and support of people with dementia and their carers. Further research is

  10. Assessing quality of life in Welsh carers with and without back pain.

    PubMed

    Shiue, Ivy

    2015-07-01

    The author aimed to study the prevalence and characteristics of care provision in Welsh adults with and without back pain, as well as their quality of life. The study used a country-wide and population-based setting from an independent dataset. Data were retrieved from and analysed in the Welsh Health Survey 2013. Information on demographics, lifestyle factors, regular care provision, and quality of life was obtained from household interviews. Chi-square tests, t-tests, and survey-weighted multinomial regression modelling were performed. Of 15,007 Welsh adults aged 16 years and above, 2751 (18.3%) reported they had been caring for a sick, disabled, or frail person. The carers tended to be between 40-74 years, female, had not obtained a bachelor's degree, with a body mass index>25, physically active, smokers, and living in indoor secondhand smoke households. People who lived in mid and western Wales tended to give care, compared with those who lived in southeast and north Wales. Carers with back pain experienced slight physical health and emotional problems, whereas carers without back pain experienced worse physical health and emotional problems, which could disrupt normal life. Nearly one in five Welsh adults, with or without back pain, have provided care for other people. Future socioeconomic structure, health policy, and nursing programmes to reinvest in long-term care, such as a national psychiatric care initiative, should be encouraged, to lessen mental suffering alongside chronic pains and to optimise adult mental health and quality of life in all people, with or without back pain.

  11. Development of a parent version of the Manchester-Minneapolis quality of life survey for use by parents and carers of UK children: MMQL-UK (PF)

    PubMed Central

    Hutchings, Hayley A; Upton, Penney; Cheung, Wai-Yee; Maddocks, Alison; Eiser, Christine; Williams, John G; Russell, Ian T; Jackson, Sonia; Jenney, Meriel EM

    2008-01-01

    Background Although it is now widely endorsed that children should as far as possible rate their own health related quality of life (HRQL), there are situations where proxy information on child HRQL may be useful, especially where a child is too ill or young to provide their own HRQL assessment. There is limited availability of generic HRQL scales that have a parallel child and parent version and that are reliable, valid, brief, comprehensible and suitable for use in UK populations. The aims of this study were therefore to develop and validate a parent version of the anglicised Manchester-Minneapolis Quality of Life child form (MMQL-UK (CF)) and to determine the level of association between the child and parent versions of this form. Methods This study was undertaken concurrently with the anglicisation and validation of the MMQL, a measure of HRQL developed for use with children in North America. At that time, no parent version existed, so the MMQL form for children (MMQL-UK (CF)) was used as the basis for the development of the MMQL-UK parent form (PF). The sample included a control group of healthy children and their parents and five exemplar groups; children diagnosed with asthma, diabetes or inflammatory bowel disease and their parents, children in remission from cancer and their parents and children in public care and their carers. Consistency of the MMQL-UK (PF) components were assessed by calculating Cronbach's alpha. Validation of the parent questionnaire was undertaken by comparing MMQL-UK (PF) component scores with comparable components on the proxy PedsQL™ quality of life scales, comparing MMQL-UK (PF) component scores between parents of healthy and chronic disease children and by comparison of component scores from children and their parents or carers. Reproducibility and responsiveness were assessed by retesting parents by follow-up questionnaires. Results A total of 874 children (completing MMQL-UK (CF)) and 572 parents or carers (completing MMQL

  12. Health Status, Social Support, and Quality of Life among Family Carers of Adults with Profound Intellectual and Multiple Disabilities (PIMD) in Taiwan

    ERIC Educational Resources Information Center

    Chou, Yueh-Ching; Chiao, Chi; Fu, Li-Yeh

    2011-01-01

    Background: Primary family carers of adults with profound intellectual and multiple disabilities (PIMD) experience a range of considerable demands. Method: A census survey was conducted in a city of Taiwan; 796 family carers of adults (aged 18 or older) diagnosed with intellectual disability and/or with multiple disabilities living with the family…

  13. Good concordance between patients and their non-professional carers about factors associated with a 'good death' and other important end-of-life decisions.

    PubMed

    Davies, Andrew; Todd, Jennifer; Bailey, Fiona; Gregory, Amanda; Waghorn, Melanie

    2016-05-17

    The aim of this study was to investigate concordance between patients and non-professional carers about factors associated with a 'good death' and other end-of-life decisions. Patients completed a questionnaire about end-of-life care issues, and were asked to rank the importance of factors linked to a 'good death'. Carers also completed a questionnaire about end-of-life care issues relating to the patient, and whether or not they agreed with those choices (ie, medical treatments, PPD). Carers were also asked to rank the importance of factors linked to a 'good death' to the patient, and to them personally at that point in time. Only 69% of patients stated they had discussed their preferences for end-of-life care with their respective carer. The rankings were similar for the patient and the carer's views of what was important for the patient, although the patients ranked 'to be involved in decisions about my care' as less important than the carers, while the carers ranked 'to have sorted out my personal affairs' as less important than the patients. When discussions around end-of-life choices do occur, carers generally appear to agree with the patients' preferences around end-of-life treatment, and preferred place of death. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

  14. Family Carers' Experience of the Need for Admission of Their Relative with an Intellectual Disability to an Assessment and Treatment Unit

    ERIC Educational Resources Information Center

    James, Neil

    2016-01-01

    Background: There is limited research that explores the experiences of family carers of individuals with an intellectual disability requiring admission to a specialist National Health Service Assessment and Treatment Unit. Accordingly, this study aimed to explore family carers' experience in respect of this phenomenon and their relationships with…

  15. Family Carers' Experience of the Need for Admission of Their Relative with an Intellectual Disability to an Assessment and Treatment Unit

    ERIC Educational Resources Information Center

    James, Neil

    2016-01-01

    Background: There is limited research that explores the experiences of family carers of individuals with an intellectual disability requiring admission to a specialist National Health Service Assessment and Treatment Unit. Accordingly, this study aimed to explore family carers' experience in respect of this phenomenon and their relationships with…

  16. A new indicator of the oral hygiene habits of disabled persons: relevance of the carer's personal appearance and interest in oral health.

    PubMed

    Limeres, J; Martínez, F; Feijoo, J F; Ramos, I; Liñares, A; Diz, P

    2014-05-01

    To investigate whether there is a relationship between the oral hygiene habits of individuals with severe disability the carer's personal appearance and interest in oral health. The study group was formed of 60 disabled persons and their respective carers who came for the first time to consultation in the Special-Needs Dentistry Unit of the University of Santiago de Compostela, Spain. All the carers answered a standardised questionnaire of 28 questions divided into four sections: disabled individual's demographic data, disabled individual's general medical details, social aspects of the carer (personal appearance of the carer and interest in oral health), and disabled individual's oral hygiene habits. The personal appearance of the carers and their interest in the disabled individual's oral health were evaluated using independent scales designed specifically for the study, with five binary items in each scale. The carer's personal appearance and interest in the disabled individual's oral health showed a statistically significant relationship with the individual's oral hygiene habits, particularly with respect to the frequency and duration of toothbrushing, need for physical restraint during toothbrushing, use of a manual toothbrush and use of toothpaste. The carer's personal appearance and interest in the disabled individual's oral health are good indicators of the oral hygiene habits of an individual with severe disability. Consideration should be given to the inclusion of these aspects as a complementary element of the dental record. © 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

  17. An emotive subject: insights from social, voluntary and healthcare professionals into the feelings of family carers for people with mental health problems.

    PubMed

    Gray, Ben; Robinson, Catherine A; Seddon, Diane; Roberts, Angela

    2009-03-01

    Caring for people with mental health problems can generate a whole range of positive and negative emotions, including fear, disbelief, guilt and chaos as well as a sense of purpose, pride and achievement. This paper explores the emotions of family carers from the perspectives of social, voluntary and healthcare professionals. Sixty-five participants were interviewed, the sample included directors, managers and senior staff from social, voluntary and healthcare organisations. Participants were encouraged to talk in detail about their understanding of the emotions of family carers. Findings highlight a rich understanding of the broad spectrum of carer emotions and the huge emotional adjustments that are often involved. Diagnosis was seen to be imbued with negative emotions, such as fear, anger and denial. However, feelings of hopelessness and desolation were often counterbalanced by feelings of hope, satisfaction and the emotional rewards of caring for a loved one. Participants noted a clear lack of emotional support for family carers, with accompanying feelings of marginalisation, particularly during transitions and especially involving young carers as well as ethnic minorities. By way of contrast, carer support groups were suggested by professionals to be a holistic, effective and economical way of meeting carers' emotional needs. This paper explores the challenge of family carer emotions from the perspective of managers and practitioners and draws out implications for research, policy and practice.

  18. Unmet Needs of People with Severe Multiple Sclerosis and Their Carers: Qualitative Findings for a Home-Based Intervention

    PubMed Central

    Borreani, Claudia; Bianchi, Elisabetta; Pietrolongo, Erika; Rossi, Ilaria; Cilia, Sabina; Giuntoli, Miranda; Giordano, Andrea; Confalonieri, Paolo; Lugaresi, Alessandra; Patti, Francesco; Grasso, Maria Grazia; de Carvalho, Laura Lopes; Palmisano, Lucia; Zaratin, Paola; Battaglia, Mario Alberto; Solari, Alessandra

    2014-01-01

    Background Few data on services for people with severe multiple sclerosis (MS) are available. The Palliative Network for Severely Affected Adults with MS in Italy (PeNSAMI) developed a home palliative care program for MS patients and carers, preceded by a literature review and qualitative study (here reported). Objective To identify unmet needs of people with severe MS living at home by qualitative research involving key stakeholders, and theorize broad areas of intervention to meet those needs. Method Data were collected from: at least 10 personal interviews with adults with severe MS (primary/secondary progressive, EDSS≥8.0); three focus group meetings (FGs) of carers of people with severe MS; and two FGs of health professionals (HPs). Grounded theory guided the analysis of interview and FG transcripts, from which the areas of intervention were theorized. Results Between October 2012 and May 2013, 22 MS patients, 30 carers and 18 HPs participated. Forty-eight needs themes were identified, grouped into 14 categories and four domains. Seven, highly interdependent intervention areas were theorized. Patients had difficulties expressing needs; experiences of burden and loneliness were prominent, chiefly in dysfunctional, less affluent families, and among parent carers. Needs differed across Italy with requirements for information and access to services highest in the South. All participants voiced a strong need for qualified personnel and care coordination in day-to-day home care. Personal hygiene emerged as crucial, as did the need for a supportive network and preservation of patient/carer roles within family and community. Conclusions Unmet needs transcended medical issues and embraced organizational and psychosocial themes, as well as health policies. The high interdependence of the seven intervention areas theorized is in line with the multifaceted approach of palliative care. At variance with typical palliative contexts, coping with disability rather than end

  19. Self-efficacy and health-related quality of life in family carers of people with dementia: a systematic review

    PubMed Central

    Crellin, Nadia E.; Orrell, Martin; McDermott, Orii; Charlesworth, Georgina

    2014-01-01

    Objectives: This review aims to explore the role of self-efficacy (SE) in the health-related quality of life (QoL) of family carers of people with dementia. Methods: A systematic review of literature identified a range of qualitative and quantitative studies. Search terms related to caring, SE, and dementia. Narrative synthesis was adopted to synthesise the findings. Results: Twenty-two studies met the full inclusion criteria, these included 17 quantitative, four qualitative, and one mixed-method study. A model describing the role of task/domain-specific SE beliefs in family carer health-related QoL was constructed. This model was informed by review findings and discussed in the context of existing conceptual models of carer adaptation and empirical research. Review findings offer support for the application of the SE theory to caring and for the two-factor view of carer appraisals and well-being. Findings do not support the independence of the negative and positive pathways. The review was valuable in highlighting methodological challenges confronting this area of research, particularly the conceptualisation and measurement issues surrounding both SE and health-related QoL. Conclusions: The model might have theoretical implications in guiding future research and advancing theoretical models of caring. It might also have clinical implications in facilitating the development of carer support services aimed at improving SE. The review highlights the need for future research, particularly longitudinal research, and further exploration of domain/task-specific SE beliefs, the influence of carer characteristics, and other mediating/moderating variables. PMID:24943873

  20. Improving clinician-carer communication for safer hospital care: a study of the 'TOP 5' strategy in patients with dementia.

    PubMed

    Luxford, Karen; Axam, Anne; Hasnip, Fiona; Dobrohotoff, John; Strudwick, Maureen; Reeve, Rebecca; Hou, Changhao; Viney, Rosalie

    2015-06-01

    To examine the impact of implementing a clinician-carer communication tool for hospitalized patients with dementia. Surveys were conducted with clinicians and carers about perceptions and experiences. Implementation process and costs were explored through surveys of local staff. Time series analysis was conducted on incident-reported falls, usage of non-regular anti-psychotics and one-to-one nursing. Twenty-one hospitals in Australia. Surveys were returned by 798 clinicians, 240 carers and 21 local liaison staff involved in implementation. Implementation of a communication tool over 12 months. The process of implementation was documented. Outcome measures included clinician and carer perceptions, safety indicators (incident-reported falls and usage of non-regular anti-psychotics), resource use and costs. Clinicians and carers reported high levels of acceptability and perceived benefits for patients. Clinicians rated confidence in caring for patients with dementia as being significantly higher after the introduction of TOP 5, (M = 2.93, SD = 0.65), than prior to TOP 5 (M = 2.74, SD = 0.75); F(1,712) = 11.21, P < 0.05. When analysed together, there was no change in incident-reported falls across all hospitals. At one hospital with a matched control ward, an average of 6.85 fewer falls incidents per month occurred in the intervention ward compared with the matched control ward (B = -6.85, P < 0.05). Our findings indicate that the use of a simple, low-cost communication strategy for patient care is associated with improvements in clinician and carer experience with potential implications for patient safety. Minimally, TOP 5 represents 'good practice' with a low risk of harm for patients. © The Author 2015. Published by Oxford University Press in association with the International Society for Quality in Health Care; all rights reserved.

  1. Perceptions of overweight by primary carers (mothers/grandmothers) of under five and elementary school-aged children in Bandung, Indonesia: a qualitative study.

    PubMed

    Rachmi, Cut Novianti; Hunter, Cynthia Louise; Li, Mu; Baur, Louise Alison

    2017-07-27

    The prevalence of childhood overweight has increased in the past two decades in Indonesia. Even though prevalence is escalating, there is a lack of qualitative evidence to assist in the design and implementation of strategies to tackle this issue. This study aimed to explore the view of primary carers (mothers and grandmothers) from different socio-economic-status groups, on childhood overweight in the Greater Bandung Area, Indonesia. We conducted 12 focus groups discussions with a total of 94 carers of under-five and 7-12 years children, from June to October 2016. We used the grounded theory approach in our analysis. Three main categories emerged: the concept of overweight, factors contributing to overweight, and awareness and feelings towards overweight children. Most carers from all SES groups defined overweight subjectively, while a few from the low SES group defined it objectively. Most carers from low and high SES groups agreed with the concept "chubbier is healthier". All carers had some knowledge of the main factors that contribute to childhood overweight: dietary factors, activity levels and sedentary behavior, and hereditary factors. Carers from all SES groups described similar characteristics of overweight; carers from low and intermediate SES groups had mixed feelings while all high SES carers have negative feelings about overweight children, mostly related to stigma. However, carers who identified their own children as being overweight expressed sensitivity about this weight status, especially their physical abilities. Almost all carers knew their children's current weight while less than two thirds knew their children's height. There are several policy implications. Firstly, health-related knowledge of the primary carers is of great importance and needs augmenting. To increase that knowledge, there is a role for front-line health practitioners (doctors/midwives/nurses) to be more active in educating the community. Secondly, simpler and more effective

  2. Patients' and carers' experiences of gaining access to acute stroke care: a qualitative study.

    PubMed

    Harrison, Madeleine; Ryan, Tony; Gardiner, Clare; Jones, Amanda

    2013-12-01

    Rapid access to acute stroke care is essential to improve stroke patient outcomes. Policy recommendations for the emergency management of stroke have resulted in significant changes to stroke services, including the introduction of hyper-acute care. To explore patients' and carers' experiences of gaining access to acute stroke care and identify the factors that enabled or prevented stroke from being treated as a medical emergency. Qualitative semi-structured interviews were conducted with 59 stroke survivors and carers who had received care at seven UK centres. The interviews were recorded and transcribed verbatim and thematic analysis was undertaken. Themes emerging showed that participants recognised signs and symptoms, they were satisfied with access to emergency medical services (EMS), and they experienced setbacks in the emergency department and delays caused by the lack of availability of specialist services outside normal working hours. Awareness of the importance of time to treatment was generally attributed to the UK stroke awareness campaign, although some felt the message was not sufficiently comprehensive. This awareness led to increased frustration when participants perceived a lack of urgency in the provision of assessment and medical care. The stroke awareness social marketing campaign has contributed to public knowledge and was perceived to assist in reducing prehospital delay. It has also resulted in an enhanced knowledge of the significance of rapid treatment on admission to hospital and raised public expectation of EMS and stroke services to act fast. More research is required to assist organisational change to reduce in-hospital delay.

  3. Psychosis seminars: an open forum for service users, carers and professionals

    PubMed Central

    Dirik, Aysegul; Tulloch, Simon; Priebe, Stefan; Giacco, Domenico

    2016-01-01

    Background Psychosis seminars enable service users, their carers and mental health professionals to meet outside of a formal care setting, increase understanding of mental illness and help establish a dialogue. Aims To explore feasibility of psychosis seminars in the UK and the experiences of participants. Method Seven meetings attended by 25 people were held over a 3-month period. An open-ended questionnaire was returned by ten participants. Responses were subjected to content analysis. Results Benefits experienced were having an open forum for talking freely about mental health issues in a neutral space, learning from others about psychosis and hearing different views. Suggested adjustments were clarifying expectations of participants at the beginning, strengthening facilitation and increasing attendance. Conclusions Psychosis seminars may help to establish a dialogue among users, carers and professionals and seem feasible in the UK, although adjustment to delivery can help their implementation. Declaration of interest None. Copyright and usage © The Royal College of Psychiatrists 2016. This is an open access article distributed under the terms of the Creative Commons Attribution (CC BY) license. PMID:27822382

  4. Knowledge, attitudes and beliefs of patients and carers regarding medication adherence: a review of qualitative literature.

    PubMed

    Kelly, Maria; McCarthy, Suzanne; Sahm, Laura Jane

    2014-12-01

    The aim of this review is to cohere evidence on the knowledge, attitudes and beliefs of patients and carers regarding medication adherence. Medication adherence refers to "the extent to which the patient's action matches the agreed recommendations". Medication adherence is vital in preventing, managing and curing illnesses and, hence, is linked with positive health outcomes. A search was conducted using the following databases: CINAHL, Embase, PubMed and Web of Knowledge from inception to November 2013. Titles and abstracts were screened for inclusion in the review according to pre-defined inclusion and exclusion criteria. Studies were assessed for quality, and data were extracted into a data extraction form. Results were analysed thematically. The final results included 34 articles. Eight analytical themes were identified: (i) beliefs and experiences of medicines, (ii) family support and culture, (iii) role of and relationship with health-care practitioners, (iv) factors related to the disease, (v) self-regulation, (vi) communication, (vii) cost and (viii) access. The theme, "beliefs and experiences of medicines", was present in 33 studies, with many discussing the influence that side effects have on medication adherence. There are a number of variables that impact upon the knowledge, attitudes and beliefs of patients and carers regarding medication adherence. This review presents an overview of the analytical themes which offers the opportunity to examine interventions and their relative efficacies to increase medication adherence.

  5. Family voices: life for family carers of people with intellectual disabilities in Ireland.

    PubMed

    Chadwick, Darren D; Mannan, Hasheem; Garcia Iriarte, Edurne; McConkey, Roy; O'Brien, Patricia; Finlay, Frieda; Lawlor, Anne; Harrington, Gerry

    2013-03-01

    Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers. This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis. Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability of appropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support. Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities to develop and be part of the community; and carers being shown respect, listened to and involved in decisions. © 2012 Blackwell Publishing Ltd.

  6. Young foster children and their carers: an approach to assessing relationships.

    PubMed

    Mares, Sarah; Torres, Marianne

    2014-07-01

    This article outlines an approach to assessing the quality of relationships between young foster children and their carers. These children are at high risk of disorganised attachment relationships and of developmental psychopathology given their relational experiences prior to and in care. During a semi-structured play interaction the emphasis is on identifying behaviours of clinical interest. This can be complex given the likelihood of atypical or unexpected behaviours expressed within relationships. The paper draws on literature on the clinical application of attachment theory to the assessment of relationships and on the authors' experience of developing and delivering an assessment and intervention service for children aged 0 to 5-years-old within a mental health service for children in foster care. Clinical material is used to illustrate and develop the issues. The case for including a semi-structured observational procedure as part of a comprehensive assessment of foster children and their carers is outlined. This is argued to have more clinical utility than formal approaches to attachment classification. The benefits of including a semi-structured and relational approach to clinical assessment of foster children are outlined along with the need to be cautious in the use of attachment related terminology when formal assessments have not been undertaken. © The Author(s) 2013.

  7. Activities enjoyed by patients with dementia together with their spouses and psychological morbidity in carers.

    PubMed

    Searson, R; Hendry, A M; Ramachandran, R; Burns, A; Purandare, N

    2008-03-01

    Caring for a spouse with dementia is stressful and respite care is sometimes used to reduce this burden. Spouses may find some aspects of caring rewarding but the literature on positive aspects of caring is limited. To describe activities enjoyed by patients with dementia together with their spouses, and examine their relationship with psychological morbidity in carers. A convenience sample of 46 patients with mild to moderate dementia (91% with Alzheimer's disease, AD) and their spouses were interviewed at home. Spouses completed the Pleasant Events Schedule (PES-AD) to identify activities enjoyed by patients and spouses on their own and together. Psychological morbidity in spouses was assessed using the General Health Questionnaire (GHQ-12). Cognitive functions, and non-cognitive symptoms were also assessed in patients. Multiple regression analysis using age, Mini-Mental State Examination, Cornell Scale for Depression in Dementia, Revised Memory and Behaviour Problems (RMBP) checklist frequency, and PES-AD- together scores as independent variables found PES-AD-together and RMBP-frequency to be independent predictors of GHQ-12 scores in spouses, but the model could explain only 28% of variance. Facilitating activities that are enjoyed by both patients with dementia and spouses may be an alternative intervention strategy to reduce carer burden.

  8. Privacy and confidentiality: perspectives of mental health consumers and carers in pharmacy settings.

    PubMed

    Hattingh, Hendrika Laetitia; Knox, Kathy; Fejzic, Jasmina; McConnell, Denise; Fowler, Jane L; Mey, Amary; Kelly, Fiona; Wheeler, Amanda J

    2015-02-01

    The study aims to explore within the community pharmacy practice context the views of mental health stakeholders on: (1) current and past experiences of privacy, confidentiality and support; and (2) expectations and needs in relation to privacy and confidentiality. In-depth interviews and focus groups were conducted in three states in Australia, namely Queensland, the northern region of New South Wales and Western Australia, between December 2011 and March 2012. There were 98 participants consisting of consumers and carers (n = 74), health professionals (n = 13) and representatives from consumer organisations (n = 11). Participants highlighted a need for improved staff awareness. Consumers indicated a desire to receive information in a way that respects their privacy and confidentiality, in an appropriate space. Areas identified that require improved protection of privacy and confidentiality during pharmacy interactions were the number of staff having access to sensitive information, workflow models causing information exposure and pharmacies' layout not facilitating private discussions. Challenges experienced by carers created feelings of isolation which could impact on care. This study explored mental health stakeholders' experiences and expectations regarding privacy and confidentiality in the Australian community pharmacy context. A need for better pharmacy staff training about the importance of privacy and confidentiality and strategies to enhance compliance with national pharmacy practice requirements was identified. Findings provided insight into privacy and confidentiality needs and will assist in the development of pharmacy staff training material to better support consumers with sensitive conditions. © 2014 Royal Pharmaceutical Society.

  9. Addressing the mental health needs of looked after children in foster care: the experiences of foster carers.

    PubMed

    York, W; Jones, J

    2017-03-01

    WHAT IS KNOWN ON THE SUBJECT?: In the UK and internationally, the number of looked after children is increasing year on year. Mental health problems among looked after children are significantly higher than in the general population, and the uptake of mental health services for these children is low. There is a poor prognosis for children with untreated mental health problems; this is further compounded if the child is within the care system. WHAT DOES THIS PAPER ADD TO EXISTING KNOWLEDGE?: This study adds to our understanding of foster carers' experiences of the mental health needs of looked after children and demonstrates some of the challenges associated with accessing appropriate and timely mental health services. New knowledge derived from this research is that the barriers to accessing Child and Adolescent Mental Health Services (CAMHS) are not at the time of initial referral as previously reported, but later, once within the mental health system with long waiting times experienced particularly for specialist services. This study provides new insights into the experience of being a foster carer and the levels of support and resources needed that directly relate to the viability of the placement. The majority of the foster carers interviewed were from a Black and Minority Ethnic (BME) background, previously under-represented in this research area. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: A number of areas in current CAMHS provision need addressing with a focus on accessibility, consultation and support for foster carers. Waiting times need to be addressed, and improved communication with other agencies is also highlighted. CAMHS nurses are well placed to develop and deliver a comprehensive care package to foster carers, offering more tailored support to them whilst enabling the children and young people in their care to access and engage more effectively with mental health services. Introduction Despite well-documented vulnerabilities to mental health problems

  10. Pre- and post-training evaluation of dental efficacy and activation measures in carers of adults with disabilities in South Australia - a pilot study.

    PubMed

    Pradhan, Archana; Keuskamp, Dominic; Brennan, David

    2016-11-01

    The aim of this pilot study was to train carers to provide oral care for adults with disabilities and to evaluate the training programme. Forty-one carers of 103 care recipients from three disability organisations in South Australia were trained in providing oral care for adults with disabilities (April 2013-April 2014). The training included an oral presentation and practical session by a special needs dentist on completing oral health assessments (OHA), developing oral healthcare plans, providing oral hygiene care and assessing the need for dental referral. Continued support was provided via home visits by dental hygienists for the first 2 months and a dentist visit at 3 months. At 6 months, agreement on OHAs between the dentist and trained carers was assessed. Pre- and post-training questionnaires (at 6 months) collected information on dental behaviours of carers and psychosocial factors: carer activation measure-knowledge (CAM-Knowledge), carer activation measure-skills (CAM-Skills), carer activation measure-confidence (CAM-Confidence) and carer dental efficacy (CDE) items (carer diligence, self-efficacy and priority). Post-training (among 16 retained carers), there were significant increases in the mean scores of CAM-Knowledge and CAM-Confidence, but not for CAM-Skills (paired-samples t-tests, α = 0.05). Per cent agreement of CDE items varied little between questionnaires. Carer-dentist agreement on OHAs was generally high with kappa values ranging from 0.63 for the assessment of gums to 1.0 for the assessment of tongue, roof of mouth, denture and dental pain. Further, carers were able to assess the need for referral of their care recipients' oral health similar to the dentist. These findings suggest that with combined theoretical and practical training and continued support, non-dental professionals like carers can improve their knowledge and confidence in providing oral care for adults with disabilities. However, the findings of this pilot study need

  11. Consumers and carers as partners in mental health research: reflections on the experience of two project teams in Victoria, Australia.

    PubMed

    Callander, Rosemary; Ning, Lei; Crowley, Anna; Childs, Bianca; Brisbane, Pam; Salter, Tony

    2011-08-01

    A successful working partnership in research between a consumer project team from the Victorian Mental Illness Awareness Council and a carer project team from the Victorian Mental Health Carers Network was forged during their collaborative involvement in an innovative 2-year pilot project funded by the Victorian Government of Australia. This project trialled new ways of capturing consumer and carer experiences of mental health services, and that feedback was integrated into service quality improvement. Towards the end of the project, an external facilitator was used to enable the two teams to reflect on their experience of working together so that their joint story could be shared with others and used to promote further use of this approach in the mental health field. Main findings included the importance of having strong support and belief at leadership levels, opportunities to build the relationship and develop mutual trust and respect, a common vision and a clearly articulated set of values, targeted training appropriate to the needs of the team members, independent work bases, and mutual support to overcome challenges encountered during the project. The experience forged a close working relationship between the two teams and has set the scene for further participation of consumers and carers in research and innovative quality-improvement processes in the mental health field. © 2011 The Authors. International Journal of Mental Health Nursing © 2011 Australian College of Mental Health Nurses Inc.

  12. Perspectives of rural carers on benefits and barriers of receiving occupational therapy via Information and Communication Technologies.

    PubMed

    Gardner, Kate; Bundy, Anita; Dew, Angela

    2016-04-01

    People with a disability living in rural areas commonly experience difficulty in accessing therapy services. Information and Communication Technologies (ICT) may have the potential to provide occupational therapy services remotely through two-way visual interactions. The aim of this qualitative study was to understand the perspectives of carers of a person with a disability living in rural New South Wales (NSW) on the use of ICT for occupational therapy service delivery. Individual semi-structured telephone interviews were conducted with 11 carers of persons with a disability living in rural NSW. Participants were asked about their use of technology, therapy experiences and their attitudes towards using ICT to receive occupational therapy for their son/daughter. Data were analysed via constant comparison and thematic analysis. Participants were willing to use ICT to enhance their current access to therapy based on their in-depth knowledge of their son or daughter and their prior experiences with therapy and technology. For ICT to work for occupational therapy, participants identified the need for support and access prior to, during and between ICT sessions. From the carers' perspectives, ICT has the potential to increase access to occupational therapy services for people with a disability who live in rural NSW. Occupational therapists could benefit from eliciting the experiences, knowledge and willingness of rural carers to deliver therapy via ICT, thereby supplementing and enhancing in-person service delivery. © 2016 Occupational Therapy Australia.

  13. Sexuality and Personal Relationships for People with an Intellectual Disability. Part II: Staff and Family Carer Perspectives

    ERIC Educational Resources Information Center

    Evans, D. S.; McGuire, B. E.; Healy, E.; Carley, S. N.

    2009-01-01

    Background: Recent ideological shifts in service provision promote appropriate sexual expression for people with an intellectual disability (ID), although there is little evidence that such advances in ideology are matched by current service provision. Part II of the current two-part study assessed the attitudes of staff and family carers to the…

  14. The Application of the Theory of Planned Behaviour to Diet in Carers of People with an Intellectual Disability

    ERIC Educational Resources Information Center

    Jenkins, Catherine M.; McKenzie, Karen

    2011-01-01

    Background: The utility of the theory of planned behaviour (TPB) in predicting the intentions of care staff to encourage healthy eating behaviour in those they supported was examined. Method: A quantitative, within-participant, questionnaire based design was used with 112 carers to assess the performance of two TPB models. The first contained the…

  15. A qualitative analysis of changes in relationship dynamics and roles between people with cancer and their primary informal carer.

    PubMed

    Ussher, Jane M; Tim Wong, W K; Perz, Janette

    2011-11-01

    It is widely accepted that cancer is an intersubjective experience that impacts upon the psychological well-being of people with cancer and informal carers, as well as on couple relationships. This qualitative study examined the nature and consequences of cancer on the relationship between informal carers and the person with cancer, from the perspective of Australian cancer carers. Sixty-two carers (42 women and 20 men), across a range of cancer types, stages and relationship dyads took part in semi-structured interviews. Participants reported that cancer had precipitated a change in roles and in the dynamics of the relationship, including having to take on quasi-medical tasks and decisions, neglecting self and other relationships, changes to the emotions or personality of the person with cancer, changed patterns of communication, and changes to sexuality and intimacy. The impact of the changed relationship included sadness, anger and frustration, as well as feelings of love and being closer together, resulting in relationship enhancement. Women were more likely to report changes in the person with cancer and to mourn the previous relationship, while more men reported relationship enhancement.

  16. Health Status and Coping Strategies among Older Parent-Carers of Adults with Intellectual Disabilities in an Australian Sample

    ERIC Educational Resources Information Center

    Llewellyn, Gwynnyth; McConnell, David; Gething, Lindsay; Cant, Rosemary; Kendig, Hal

    2010-01-01

    Background: Older parent-carers in Australia are the subject of increasing policy and practice attention due to concerns about their ongoing ability to care in the light of their own ageing and the ageing of their adult son or daughter. This paper examines health status and the coping strategies of a group of older Australian parents caring for an…

  17. Perceived Barriers and Facilitators to Positive Therapeutic Change for People with Intellectual Disabilities: Client, Carer and Clinical Psychologist Perspectives

    ERIC Educational Resources Information Center

    Ramsden, Sarah; Tickle, Anna; Dawson, David L.; Harris, Samantha

    2016-01-01

    Studies have highlighted successful outcomes of psychological therapies for people with intellectual disabilities. However, processes underlying these outcomes are uncertain. Thematic analysis was used to explore the perceptions of three clinical psychologists, six clients and six carers of barriers and facilitators to therapeutic change for…

  18. Carer-Reported Contemporary Health Problems in People with Severe and Profound Intellectual Disability and Genetic Syndromes

    ERIC Educational Resources Information Center

    Berg, Katy; Arron, Kate; Burbidge, Cheryl; Moss, Joanna; Oliver, Chris

    2007-01-01

    Identifying health problems in people with severe and profound disabilities and genetic syndromes can be problematic, and unidentified or unmanaged health problems may adversely impact an individual's quality of life. The authors studied carer-reported contemporary health problems in three genetic syndromes (Angelman, Cornelia de Lange, and Cri du…

  19. The Application of the Theory of Planned Behaviour to Diet in Carers of People with an Intellectual Disability

    ERIC Educational Resources Information Center

    Jenkins, Catherine M.; McKenzie, Karen

    2011-01-01

    Background: The utility of the theory of planned behaviour (TPB) in predicting the intentions of care staff to encourage healthy eating behaviour in those they supported was examined. Method: A quantitative, within-participant, questionnaire based design was used with 112 carers to assess the performance of two TPB models. The first contained the…

  20. Carer-Reported Contemporary Health Problems in People with Severe and Profound Intellectual Disability and Genetic Syndromes

    ERIC Educational Resources Information Center

    Berg, Katy; Arron, Kate; Burbidge, Cheryl; Moss, Joanna; Oliver, Chris

    2007-01-01

    Identifying health problems in people with severe and profound disabilities and genetic syndromes can be problematic, and unidentified or unmanaged health problems may adversely impact an individual's quality of life. The authors studied carer-reported contemporary health problems in three genetic syndromes (Angelman, Cornelia de Lange, and Cri du…

  1. Using telematics with older people: the ACTION project. Assisting Carers using Telematics Interventions to meet Older persons' Needs.

    PubMed

    Magnusson, L; Berthold, H; Chambers, M; Brito, L; Emery, D; Daly, T

    In this article, the authors provide an overview of the pan-European Assisting Carers using Telematics Interventions to meet Older persons' Needs (ACTION) project. They focus on the developmental aspects of the ACTION project and discuss ongoing work and future development plans.

  2. "People Are Suspicious of Us": A Critical Examination of Father Primary Carers and English Early Childhood Services

    ERIC Educational Resources Information Center

    Roberts-Holmes, Guy P.

    2009-01-01

    Positive father involvement and investment in the early years is of importance for children's later emotional, cognitive and social well-being. This article critically examines the multiple motivations and barriers experienced by the growing number of father primary carers. The small-scale research study presented suggests that for a…

  3. Costs and health-related quality of life of patients with cystic fibrosis and their carers in France.

    PubMed

    Chevreul, Karine; Berg Brigham, Karen; Michel, Morgane; Rault, Gilles

    2015-05-01

    Our goal was to provide data on the economic burden and health-related quality of life (HRQoL) associated with cystic fibrosis (CF) in France. A retrospective cross-sectional study was carried out on adults and children with CF, who completed an anonymous questionnaire regarding their socio-demographic characteristics, healthcare consumption and presence of a carer. Costs were calculated with a bottom-up approach, and HRQoL was assessed using EQ-5D. 82 adults and 158 children were included. The total average annual cost of CF was €29,746 per patient. Total costs were higher in adults than in children and increased with disease duration. The average utility was lower in adults (0.667 vs. 0.783 in children, p=0.0015). The HRQoL of carers was also affected (0.742 and 0.765 for carers of adults and children with CF, respectively). Our study highlights the burden of CF in terms of costs and decreased HRQoL for both patients and carers. Copyright © 2014 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

  4. The Relationship between Carers' Report of Autistic Traits and Clinical Diagnoses of Autism Spectrum Disorders in Adults with Intellectual Disability

    ERIC Educational Resources Information Center

    Bhaumik, Sabyasachi; Tyrer, Freya; Barrett, Mary; Tin, Nyunt; McGrother, Catherine W.; Kiani, Reza

    2010-01-01

    It is often difficult to determine the triad of impairments and whether autistic features are the consequence of intellectual impairment or autism spectrum disorders in people with intellectual disability (ID). The aim of the current study was to investigate the relationship between carer-reported autistic traits and independent diagnoses of…

  5. "Stroppy" or "Confident"? Do Carers and Professionals View the Impact of Transition Support on Young People Differently?

    ERIC Educational Resources Information Center

    Kaehne, Axel; Beyer, Stephen

    2011-01-01

    The study examined the effects of transition employment support to two cohorts of young people who were in their last year in school or college in 2005/2006 and 2006/2007. This paper reports the views of carers, teachers and support workers of the impact this additional support made to the young people. Analysis of the data reveals a difference…

  6. The experience of family carers attending a joint reminiscence group with people with dementia: A thematic analysis

    PubMed Central

    Melunsky, Nina; Crellin, Nadia; Dudzinski, Emma; Orrell, Martin; Wenborn, Jennifer; Poland, Fiona; Woods, Bob

    2015-01-01

    Reminiscence therapy has the potential to improve quality of life for people with dementia. In recent years reminiscence groups have extended to include family members, but carers’ experience of attending joint sessions is undocumented. This qualitative study explored the experience of 18 family carers attending ‘Remembering Yesterday Caring Today’ groups. Semi-structured interviews were transcribed and subjected to thematic analysis. Five themes were identified: experiencing carer support; shared experience; expectations (met and unmet), carer perspectives of the person with dementia’s experience; and learning and comparing. Family carers’ experiences varied, with some experiencing the intervention as entirely positive whereas others had more mixed feelings. Negative aspects included the lack of respite from their relative, the lack of emphasis on their own needs, and experiencing additional stress and guilt through not being able to implement newly acquired skills. These findings may explain the failure of a recent trial of joint reminiscence groups to replicate previous findings of positive benefit. More targeted research within subgroups of carers is required to justify the continued use of joint reminiscence groups in dementia care. PMID:24381218

  7. Sexuality and Personal Relationships for People with an Intellectual Disability. Part II: Staff and Family Carer Perspectives

    ERIC Educational Resources Information Center

    Evans, D. S.; McGuire, B. E.; Healy, E.; Carley, S. N.

    2009-01-01

    Background: Recent ideological shifts in service provision promote appropriate sexual expression for people with an intellectual disability (ID), although there is little evidence that such advances in ideology are matched by current service provision. Part II of the current two-part study assessed the attitudes of staff and family carers to the…

  8. Dying from cancer in developed and developing countries: lessons from two qualitative interview studies of patients and their carers.

    PubMed

    Murray, Scott A; Grant, Elizabeth; Grant, Angus; Kendall, Marilyn

    2003-02-15

    To describe the experiences of illness and needs and use of services in two groups of patients with incurable cancer, one in a developed country and the other in a developing country. Scotland: longitudinal study with qualitative interviews. Kenya: cross sectional study with qualitative interviews. Lothian region, Scotland, and Meru District, Kenya. Scotland: 20 patients with inoperable lung cancer and their carers. Kenya: 24 patients with common advanced cancers and their main informal carers. Descriptions of experiences, needs, and available services. 67 interviews were conducted in Scotland and 46 in Kenya. The emotional pain of facing death was the prime concern of Scottish patients and their carers, while physical pain and financial worries dominated the lives of Kenyan patients and their carers. In Scotland, free health and social services (including financial assistance) were available, but sometimes underused. In Kenya, analgesia, essential equipment, suitable food, and assistance in care were often inaccessible and unaffordable, resulting in considerable unmet physical needs. Kenyan patients thought that their psychological, social, and spiritual needs were met by their families, local community, and religious groups. Some Scottish patients thought that such non-physical needs went unmet. In patients living in developed and developing countries there are differences not only in resources available for patients dying from cancer but also in their lived experience of illness. The expression of needs and how they are met in different cultural contexts can inform local assessment of needs and provide insights for initiatives in holistic cancer care.

  9. Perceived Barriers and Facilitators to Positive Therapeutic Change for People with Intellectual Disabilities: Client, Carer and Clinical Psychologist Perspectives

    ERIC Educational Resources Information Center

    Ramsden, Sarah; Tickle, Anna; Dawson, David L.; Harris, Samantha

    2016-01-01

    Studies have highlighted successful outcomes of psychological therapies for people with intellectual disabilities. However, processes underlying these outcomes are uncertain. Thematic analysis was used to explore the perceptions of three clinical psychologists, six clients and six carers of barriers and facilitators to therapeutic change for…

  10. The effectiveness of an Internet support forum for carers of people with dementia: a pre-post cohort study.

    PubMed

    McKechnie, Vicky; Barker, Chris; Stott, Josh

    2014-02-28

    The well-being of informal carers of people with dementia is an important public health issue. Caring for an elderly relative with dementia may be burdensome and stressful, and can negatively affect the carer's social, family, and professional life. The combination of loss, the physical demands of caregiving, prolonged distress, and biological vulnerabilities of older carers may compromise their physical health, increase social isolation, and increase the risk of anxiety and depressive disorders. Caregiver stress is also linked to negative outcomes for the recipient of care and costs to society, including increased nursing home and hospital admissions. Consequently, carer support interventions are an important component of dementia care. Computer-mediated carer support offers a range of potential advantages compared to traditional face-to-face support groups, including accessibility and the possibility of tailoring to meet individual needs, but there has been little research on its effectiveness so far. This mixed-methods study examined the impact of a well-respected UK-based online support forum for carers of people with dementia. A total of 61 new forum users completed measures of anxiety (7-item Generalized Anxiety Disorder scale, GAD-7), depression (9-item Patient Health Questionnaire, PHQ-9), and quality of relationship with the person with dementia (Scale for the Quality of the Current Relationship in Caregiving, SQCRC), at baseline and again after 12 weeks of forum usage, within a pre-post design. In addition, 8 participants were interviewed about their experiences with using the forum. There was an improvement in the quality of the relationship with the person with dementia (SQCRC: P=.003). There was no change in users' depression (PHQ-9) or anxiety (GAD-7) over the 12-week study period. Interview participants reported a range of positive experiences and benefits from using the forum. Limited negative experiences were also reported. Many of the reported

  11. Health economics research into supporting carers of people with dementia: A systematic review of outcome measures

    PubMed Central

    2012-01-01

    Advisory bodies, such as the National Institute for Health and Clinical Excellence (NICE) in the UK, advocate using preference based instruments to measure the quality of life (QoL) component of the quality-adjusted life year (QALY). Cost per QALY is used to determine cost-effectiveness, and hence funding, of interventions. QALYs allow policy makers to compare the effects of different interventions across different patient groups. Generic measures may not be sensitive enough to fully capture the QoL effects for certain populations, such as carers, so there is a need to consider additional outcome measures, which are preference based where possible to enable cost-effectiveness analysis to be undertaken. This paper reviews outcome measures commonly used in health services research and health economics research involving carers of people with dementia. An electronic database search was conducted in PubMed, Medline, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, the National Health Service Economic Evaluation Database (NHS EED), Database of Abstracts of Reviews of Effects (DARE) and Health Technology Assessment database. Studies were eligible for inclusion if they included an outcome measure for carers of people with dementia. 2262 articles were identified. 455 articles describing 361 studies remained after exclusion criteria were applied. 228 outcome measures were extracted from the studies. Measures were categorised into 44 burden measures, 43 mastery measures, 61 mood measures, 32 QoL measures, 27 social support and relationships measures and 21 staff competency and morale measures. The choice of instrument has implications on funding decisions; therefore, researchers need to choose appropriate instruments for the population being measured and the type of intervention undertaken. If an instrument is not sensitive enough to detect changes in certain populations, the effect of an intervention may be underestimated, and hence

  12. Do stress and support matter for caring? The role of perceived stress and social support on expressed emotion of carers of persons with first episode psychosis.

    PubMed

    Sadath, Anvar; Muralidhar, D; Varambally, Shivarama; Gangadhar, B N; Jose, Justin P

    2017-02-01

    Caring for a person with first episode psychosis (FEP) is a challenging and distressing task for the carers. The carers' stress in the early stage of psychosis can increase their expressed emotion (EE) while social support is hypothesized to decrease EE. However, the influence of stress and social support on carers' EE is not well understood in FEP. To examine how the stress and social support shape expressed emotion in the carers of FEP. Seventy one carers of the patients with non-affective FEP were recruited from the inpatient psychiatry ward of a tertiary mental health care center in South India. The family questionnaire, perceived stress scale and multidimensional scale of perceived social support were used to measure their EE, stress and social support respectively. Carers experienced high level of perceived stress, EE and poor social support. Perceived stress significantly increased EE (β=0.834; p<0.001) and social support did not significantly influence EE (β=-0.065; p>0.05). Perceived stress predicted 76 percent of the variance on EE (Adjusted R(2)=0.761). The results emphasize high level of stress and EE in carers of patients with FEP that implies the need for appropriate psychosocial interventions to manage their stress. Copyright © 2016 Elsevier B.V. All rights reserved.

  13. Caring for people with eating disorders: factors associated with psychological distress and negative caregiving appraisals in carers of people with eating disorders.

    PubMed

    Whitney, Jenna; Haigh, Rachel; Weinman, John; Treasure, Janet

    2007-11-01

    Carers of people with eating disorders (ED) have high levels of distress, but little is known about the contributing factors. The aim of this study was to examine predictors of carers' distress and caregiving appraisals using a model of caregiving adapted from the previous literature. A cross-sectional design was used. A sample of 115 individuals currently caring for someone with an ED participated in the study. Carers completed self-report assessments of psychological distress (GHQ-12; Goldberg & Williams, 1988), experience of caregiving (Szmukler et al., 1996), illness representations (IPQ-SCV; Barrowclough, Lobban, Hatton, & Quinn, 2001) and caregiving needs (CaNAM; Haigh & Treasure, 2003). Simple and multiple hierarchical regressions were conducted. Approximately 36% (39/109) of carers had scores on the GHQ which indicated mental health difficulties, with 17% (19/109) experiencing high psychological distress. A negative experience of caregiving was associated with carers' distress. The dependency of the individual with the ED and stigma associated with the illness were most highly predictive of carers' distress. Shorter illness duration, higher levels of needs (lower levels of support) and perceptions of high illness consequences contributed to greater negative caregiving appraisals. The belief that the illness was attributable to the sufferers' personality was related to fewer positive appraisals. Adjusting to the impact of a family member experiencing an ED is problematic, as suggested by the relationship between shorter illness duration and greater negative appraisals of caregiving. Interventions to help reduce dependency and alleviate stigma may help to decrease carers' distress.

  14. Family carers' experience of the need for admission of their relative with an intellectual disability to an Assessment and Treatment Unit.

    PubMed

    James, Neil

    2016-03-01

    There is limited research that explores the experiences of family carers of individuals with an intellectual disability requiring admission to a specialist National Health Service Assessment and Treatment Unit. Accordingly, this study aimed to explore family carers' experience in respect of this phenomenon and their relationships with professionals at this time. Interpretative phenomenological analysis was used. Six family carers (three mothers and three fathers) participated and were interviewed via the use of semi-structured interviews. Five major themes were developed to represent how carers made sense and gave meaning to their experience. They illustrate how this experience had a significant influence on their sense of value and self-identity. It resulted in higher levels of anxiety, stress and uncertainty about the future of their relative and their identity as a carer. Significantly, professionals are identified as having a pivotal role in influencing how carers come to view their sense of self, identity, value and importance. The admission of their relative was a time of increased vulnerability for carers in respect of maintaining a sense of self-identity. Engaging with services and professionals had a major influence on situating them within the social structure that makes up the formal system of support. This had a pivotal role in influencing and determining how participants identified with their sense of self. © The Author(s) 2015.

  15. A pilot investigation of quality of life and lung function following choral singing in cancer survivors and their carers

    PubMed Central

    Gale, NS; Enright, S; Reagon, C; Lewis, I; van Deursen, R

    2012-01-01

    Background: The diagnosis of cancer creates a wide range of social and emotional problems to patients and carers. However, delivering effective psychological, emotional, and social support remains a challenge. This pilot study evaluated quality of life (QoL) and lung function before and after three months of choral singing in cancer survivors and their carers. Methods: At baseline, 30 cancer survivors and their carers, mean (standard deviation) age 60 (10), completed questions about QoL (SF-36), anxiety and depression, and the multidimensional fatigue score. Lung function was measured by spirometry, and respiratory musclestrength (maximal inspiratory pressure, MIP; maximal expiratory pressure, MEP) was also measured. Assessments were repeated after three months of singing in the choir, and 10 participants completed semi-structured interviews to explore their experience of the choir. Results: After three months of choral singing, 20 subjects repeated the assessments. Several domains of the SF-36 improved, including vitality, social functioning, mental health, and bodily pain. There was also a trend of reduced anxiety and depression, despite no change in fatigue. Spirometric measures of lung function were unchanged; however, there was a trend of increased MEP. Themes from the interviews revealed that the choir provided a focus, so the future participants felt uplifted and had greater confidence and self-esteem. Conclusions: This pilot project provides preliminary data which suggest choral singing may improve QoL and depression, despite no physiological change in cancer survivors and their carers. Choral groups offer a support mechanism applicable to cancer patients, carers, and supporters, and may be relevant to other chronic conditions. Further research examining the efficacy of this intervention in a larger controlled study is warranted. PMID:22837766

  16. Psychological treatments for common mental health problems experienced by informal carers of adults with chronic physical health conditions (Protocol).

    PubMed

    Woodford, Joanne; Farrand, Paul; Richards, David; Llewellyn, David J

    2013-01-31

    Improved life expectancy is resulting in increased outpatient treatment of people with chronic physical health conditions and reliance on the provision of informal care in the community. However, informal care is also associated with increased risk of experiencing common mental health difficulties such as depression and anxiety. Currently there is a lack of evidence-based treatments for such difficulties, resulting in poor health outcomes for both the informal carer and care recipient. Electronic databases will be systemically searched for randomised controlled trials examining the effectiveness of psychological interventions targeted at treating depression or anxiety experienced by informal carers of patients with chronic physical health conditions. Database searches will be supplemented by contact with experts, reference and citation checking and grey literature. Both published and unpublished research in English language will be reviewed with no limitations on year or source. Individual, group and patient-carer dyad focused interventions will be eligible. Primary outcomes of interest will be validated self-report or clinician administered measures of depression or anxiety. If data allows a meta-analysis will examine: (1) the overall effectiveness of psychological interventions in relation to outcomes of depression or anxiety; (2) intervention components associated with effectiveness. This review will provide evidence on the effectiveness of psychological interventions for depression and anxiety experienced by informal carers of patients with chronic physical health conditions. In addition, it will examine intervention components associated with effectiveness. Results will inform the design and development of a psychological intervention for carers of people with chronic physical health conditions experiencing depression and anxiety. PROSPERO registration number: CRD42012003114.

  17. A qualitative study exploring why adults with intellectual disabilities and obesity want to lose weight and views of their carers.

    PubMed

    Jones, N; Melville, C A; Harris, L; Bleazard, L; Hankey, C R

    2015-01-01

    Obesity is more prevalent in adults with intellectual disabilities (ID) compared to the general population. Motivations for weight loss may influence engagement with weight management programmes and have only been studied in adults without ID. To determine reasons given by adults with ID and obesity for seeking weight loss and whether these reasons differ from those of their carers. Prior to a multi-component weight management intervention, participants were asked "why do you want to lose weight?" Carers were asked their views and these were compared to the answers given by the adult with ID. Responses were themed. The Fisher's Exact analysis was used to test for any relationship between reasons for seeking weight loss and participants' level of ID, age, gender and BMI. Eighteen men and 32 women; age 41.6 SD 14.6 years; BMI 40.8 SD 7.5 kg/m(2); Level ID Mild (28 %), Moderate (42 %), Severe (22 %), Profound (8 %). Eleven were unable to respond. Six themes emerged; Health; Fitness / Activity / Mobility; Appearance / Clothes; Emotional / Happiness; For Others; Miscellaneous. The most frequent reason given overall and by women was "appearance." Carers cited "health" most frequently and "appearance" least, rarely agreeing with participants. "Health" was given as a reason more from older adults and those with milder ID. No statistically significant associations were found between reasons for seeking weight loss and BMI age, gender or level of ID but the differing views of adults with ID and their carers were clear. Views of adults with obesity and mild or moderate ID can be collected. The opposing views of adults and their carers may affect motivation for weight loss.

  18. A pilot investigation of quality of life and lung function following choral singing in cancer survivors and their carers.

    PubMed

    Gale, Ns; Enright, S; Reagon, C; Lewis, I; van Deursen, R

    2012-01-01

    The diagnosis of cancer creates a wide range of social and emotional problems to patients and carers. However, delivering effective psychological, emotional, and social support remains a challenge. This pilot study evaluated quality of life (QoL) and lung function before and after three months of choral singing in cancer survivors and their carers. At baseline, 30 cancer survivors and their carers, mean (standard deviation) age 60 (10), completed questions about QoL (SF-36), anxiety and depression, and the multidimensional fatigue score. Lung function was measured by spirometry, and respiratory musclestrength (maximal inspiratory pressure, MIP; maximal expiratory pressure, MEP) was also measured. Assessments were repeated after three months of singing in the choir, and 10 participants completed semi-structured interviews to explore their experience of the choir. After three months of choral singing, 20 subjects repeated the assessments. Several domains of the SF-36 improved, including vitality, social functioning, mental health, and bodily pain. There was also a trend of reduced anxiety and depression, despite no change in fatigue. Spirometric measures of lung function were unchanged; however, there was a trend of increased MEP. Themes from the interviews revealed that the choir provided a focus, so the future participants felt uplifted and had greater confidence and self-esteem. This pilot project provides preliminary data which suggest choral singing may improve QoL and depression, despite no physiological change in cancer survivors and their carers. Choral groups offer a support mechanism applicable to cancer patients, carers, and supporters, and may be relevant to other chronic conditions. Further research examining the efficacy of this intervention in a larger controlled study is warranted.

  19. Psychological treatments for common mental health problems experienced by informal carers of adults with chronic physical health conditions (Protocol)

    PubMed Central

    2013-01-01

    Background Improved life expectancy is resulting in increased outpatient treatment of people with chronic physical health conditions and reliance on the provision of informal care in the community. However, informal care is also associated with increased risk of experiencing common mental health difficulties such as depression and anxiety. Currently there is a lack of evidence-based treatments for such difficulties, resulting in poor health outcomes for both the informal carer and care recipient. Methods/Design Electronic databases will be systemically searched for randomised controlled trials examining the effectiveness of psychological interventions targeted at treating depression or anxiety experienced by informal carers of patients with chronic physical health conditions. Database searches will be supplemented by contact with experts, reference and citation checking and grey literature. Both published and unpublished research in English language will be reviewed with no limitations on year or source. Individual, group and patient-carer dyad focused interventions will be eligible. Primary outcomes of interest will be validated self-report or clinician administered measures of depression or anxiety. If data allows a meta-analysis will examine: (1) the overall effectiveness of psychological interventions in relation to outcomes of depression or anxiety; (2) intervention components associated with effectiveness. Discussion This review will provide evidence on the effectiveness of psychological interventions for depression and anxiety experienced by informal carers of patients with chronic physical health conditions. In addition, it will examine intervention components associated with effectiveness. Results will inform the design and development of a psychological intervention for carers of people with chronic physical health conditions experiencing depression and anxiety. PROSPERO registration number: CRD42012003114 PMID:23369319

  20. Barriers to access and minority ethnic carers' satisfaction with social care services in the community: a systematic review of qualitative and quantitative literature.

    PubMed

    Greenwood, Nan; Habibi, Ruth; Smith, Raymond; Manthorpe, Jill

    2015-01-01

    As populations age, the numbers of carers overall and numbers of carers from minority ethnic groups in particular are rising. Evidence suggests that carers from all sections of the community and particularly carers from minority groups often fail to access care services. This may relate to barriers in accessing services and service dissatisfaction. The aim of this systematic review was to identify and summarise minority ethnic carers' perceptions of barriers to accessing community social care services and their satisfaction with these services if accessed. The following databases were searched from their start until July 2013: Social Care Online, Social Policy and Research, Scopus, PsychINFO, HMIC, ASSIA, MEDLINE, Embase, CINAHL Plus and AMED. Thirteen studies met the inclusion criteria. Most investigated either barriers to access or satisfaction levels, although three explored both. Only 4 studies investigated minority ethnic carers' satisfaction with social care, although 12 studies reported perceived barriers to accessing services. Few studies compared minority ethnic carers' perceptions with majority ethnic groups, making it difficult to identify issues specific to minority groups. Most barriers described were potentially relevant to all carers, irrespective of ethnic group. They included attitudinal barriers such as not wanting to involve outsiders or not seeing the need for services and practical barriers such as low awareness of services and service availability. Issues specific to minority ethnic groups included language barriers and concerns about services' cultural or religious appropriateness. Studies investigating satisfaction with services reported a mixture of satisfaction and dissatisfaction. Barriers common to all groups should not be underestimated and a better understanding of the relationship between perceived barriers to accessing services and dissatisfaction with services is needed before the experiences of all carers can be improved.

  1. Barriers to access and minority ethnic carers' satisfaction with social care services in the community: a systematic review of qualitative and quantitative literature

    PubMed Central

    Greenwood, Nan; Habibi, Ruth; Smith, Raymond; Manthorpe, Jill

    2015-01-01

    As populations age, the numbers of carers overall and numbers of carers from minority ethnic groups in particular are rising. Evidence suggests that carers from all sections of the community and particularly carers from minority groups often fail to access care services. This may relate to barriers in accessing services and service dissatisfaction. The aim of this systematic review was to identify and summarise minority ethnic carers' perceptions of barriers to accessing community social care services and their satisfaction with these services if accessed. The following databases were searched from their start until July 2013: Social Care Online, Social Policy and Research, Scopus, PsychINFO, HMIC, ASSIA, MEDLINE, Embase, CINAHL Plus and AMED. Thirteen studies met the inclusion criteria. Most investigated either barriers to access or satisfaction levels, although three explored both. Only 4 studies investigated minority ethnic carers' satisfaction with social care, although 12 studies reported perceived barriers to accessing services. Few studies compared minority ethnic carers' perceptions with majority ethnic groups, making it difficult to identify issues specific to minority groups. Most barriers described were potentially relevant to all carers, irrespective of ethnic group. They included attitudinal barriers such as not wanting to involve outsiders or not seeing the need for services and practical barriers such as low awareness of services and service availability. Issues specific to minority ethnic groups included language barriers and concerns about services' cultural or religious appropriateness. Studies investigating satisfaction with services reported a mixture of satisfaction and dissatisfaction. Barriers common to all groups should not be underestimated and a better understanding of the relationship between perceived barriers to accessing services and dissatisfaction with services is needed before the experiences of all carers can be improved. PMID

  2. Looking after the mouth - Evaluation of a pilot for a new approach to training care home carers in Kent, Surrey and Sussex.

    PubMed

    Eaton, K A; Lloyd, H A; Wheeler, M; Sullivan, J; Klass, C; Allen, Y; Lambert-Humble, S

    2016-07-08

    Objective This pilot study aimed to produce and evaluate training resources and training in oral health care, including oral hygiene, for carers in care homes in Surrey and Medway.Methods During two training days, for carers from these homes, short, interactive presentations were given on a range of topics relevant to oral health care and oral hygiene of older people, followed by practical training. Prior to any training all attendees completed a 39 question questionnaire to establish their baseline knowledge of oral health and hygiene. At the end of the training day they completed an evaluation form. Fourteen weeks later, they were visited at their place of work and completed the same questionnaire again. Differences in responses between baseline and after 14 weeks were statistically tested using the chi-squared test.Results Sixty-six carers attended the training sessions and 44 were followed up 14 weeks later. The results showed an improvement in carer knowledge at follow up. The majority of carers (36/44) spoke English as their first language. They had a mean age of 41 years, 37 were female and 7 male. They had worked as carers for a mean of 10.9 years (range 4 months-34 years). Over 90% stated that the training day fully met or exceeded their requirements and expectations.Conclusions The results indicated improvements in carer knowledge. However, the carers were atypical of carers in general, as they were self-selected and well-motivated. Nevertheless the content of the training day and the questionnaire should inform future work in this area.

  3. Professional carers' experiences of caring for individuals with intellectual disability and dementia.

    PubMed

    Cleary, Josephine; Doody, Owen

    2017-03-01

    The number of people with intellectual disability living into old age and developing dementia continues to increase. Dementia presents a wide range of challenges for staff due to progressive deterioration. This article presents the findings from a narrative literature review of professional caregivers' experiences of caring for individuals with intellectual disability and dementia. Seven electronic databases were searched using Boolean operators and truncation to identify relevant literature. Search results were combined and narrowed to articles relevant to staff working with individuals with intellectual disability and dementia, and 14 articles met the criteria for review. Themes outlined in the review include staff knowledge of dementia, staff training in dementia, caregiving, challenging behaviour, pain management, mealtime support and coping strategies. Overall carers must review and adjust their care delivery and support to people with intellectual disability and dementia, not only in terms of identifying and responding to their health needs but also through collaborative team working within and across services.

  4. Developing an information pack for the Asian carers of people with autism spectrum disorders.

    PubMed

    Dobson, S; Upadhyaya, S; McNeil, J; Venkateswaran, S; Gilderdale, D

    2001-01-01

    An investigation is described which forms the basis for the development of an information package for the Asian carers of people with autism spectrum disorders (ASD) and learning disabilities. The results of semi-structured interviews and planning for questionnaires with three different linguistic Asian groups (Urdu, Gujarati and Bengali) are presented. The views, attitudes and awareness of autism, knowledge of support services and perceived priority of needs are analysed for the three different communities. The investigation concludes with recommendations as to whether separate information is needed by each culture or whether a single information pack can be used and presented in each language format. The possible presentation format in which the information can be produced is also discussed.

  5. Experiences of going to court: Witnesses with intellectual disabilities and their carers speak up.

    PubMed

    Beckene, Tessy; Forrester-Jones, Rachel; Murphy, Glynis H

    2017-03-31

    People with intellectual disabilities are more vulnerable to sexual abuse and are more disadvantaged in the criminal justice system than the general population. However, little is known about the experiences of people with intellectual disabilities who have allegedly been victims of sexual abuse and also been witnesses in court. This study used semi-structured interviews and a Grounded Theory approach to examine the experiences of four people with intellectual disabilities and four carers/supporters who had all attended trials. Findings showed that after the traumatic incident of abuse, a court experience could become a secondary source of trauma. Experience of this trauma was dependent on the quality and quantity of support people received and the understanding of intellectual disabilities amongst the legal participants. The findings argue for better training for legal participants who are in contact with vulnerable witnesses and better support structures for alleged victims. © 2017 John Wiley & Sons Ltd.

  6. Patients' and carers' experiences of interacting with home haemodialysis technology: implications for quality and safety.

    PubMed

    Rajkomar, Atish; Farrington, Ken; Mayer, Astrid; Walker, Diane; Blandford, Ann

    2014-12-11

    Little is known about patients' and carers' experiences of interacting with home haemodialysis (HHD) technology, in terms of user experience, how the design of the technology supports safety and fits with home use, and how the broader context of service provision impacts on patients' use of the technology. Data were gathered through ethnographic observations and interviews with 19 patients and their carers associated with four different hospitals in the UK, using five different HHD machines. All patients were managing their condition successfully on HHD. Data were analysed qualitatively, focusing on themes of how individuals used the machines and how they managed their own safety. Findings are organised by three themes: learning to use the technology, usability of the technology, and managing safety during dialysis. Home patients want to live their lives fully, and value the freedom and autonomy that HHD gives them; they adapt use of the technology to their lives and their home context. They also consider the machines to be safe; nevertheless, most participants reported feeling scared and having to learn through mistakes in the early months of dialysing at home. Home care nurses and technicians provide invaluable support. Although participants reported on strategies for anticipating problems and keeping safe, perceived limitations of the technology and of the broader system of care led some to trade off safety against immediate quality of life. Enhancing the quality and safety of the patient experience in HHD involves designing technology and the broader system of care to take account of how individuals manage their dialysis in the home. Possible design improvements to enhance the quality and safety of the patient experience include features to help patients manage their dialysis (e.g. providing timely reminders of next steps) and features to support communication between families and professionals (e.g. through remote monitoring).

  7. Singing modulates mood, stress, cortisol, cytokine and neuropeptide activity in cancer patients and carers.

    PubMed

    Fancourt, Daisy; Williamon, Aaron; Carvalho, Livia A; Steptoe, Andrew; Dow, Rosie; Lewis, Ian

    2016-01-01

    There is growing evidence that psychosocial interventions can have psychological benefits for people affected by cancer, including improved symptoms of mental health and wellbeing and optimised immune responses. However, despite growing numbers of music interventions, particularly singing, in cancer care, there is less research into their impact. We carried out a multicentre single-arm preliminary study to assess the impact of singing on mood, stress and immune response in three populations affected by cancer: carers (n = 72), bereaved carers (n = 66) and patients (n = 55). Participants were excluded if pregnant or if they were currently being treated with chemotherapy, radiotherapy or oral immunosuppressive drugs. Participants were regular participants in five choirs across South Wales and took part in one hour of group singing. Before and after singing, visual analogue mood scales, stress scales and saliva samples testing for cortisol, beta-endorphin, oxytocin and ten cytokines were taken. Across all five centres and in all four participant groups, singing was associated with significant reductions in negative affect and increases in positive affect (p < .01) alongside significant increases in cytokines including GM-CSF, IL17, IL2, IL4 and sIL-2rα (all p < .01). In addition, singing was associated with reductions in cortisol, beta-endorphin and oxytocin levels. This study provides preliminary evidence that singing improves mood state and modulates components of the immune system. Further work is needed to ascertain how this differs for more specific patient groups and whether repeat exposure could lead to meaningful, longitudinal effects.

  8. Singing modulates mood, stress, cortisol, cytokine and neuropeptide activity in cancer patients and carers

    PubMed Central

    Fancourt, Daisy; Williamon, Aaron; Carvalho, Livia A; Steptoe, Andrew; Dow, Rosie; Lewis, Ian

    2016-01-01

    There is growing evidence that psychosocial interventions can have psychological benefits for people affected by cancer, including improved symptoms of mental health and wellbeing and optimised immune responses. However, despite growing numbers of music interventions, particularly singing, in cancer care, there is less research into their impact. We carried out a multicentre single-arm preliminary study to assess the impact of singing on mood, stress and immune response in three populations affected by cancer: carers (n = 72), bereaved carers (n = 66) and patients (n = 55). Participants were excluded if pregnant or if they were currently being treated with chemotherapy, radiotherapy or oral immunosuppressive drugs. Participants were regular participants in five choirs across South Wales and took part in one hour of group singing. Before and after singing, visual analogue mood scales, stress scales and saliva samples testing for cortisol, beta-endorphin, oxytocin and ten cytokines were taken. Across all five centres and in all four participant groups, singing was associated with significant reductions in negative affect and increases in positive affect (p < .01) alongside significant increases in cytokines including GM-CSF, IL17, IL2, IL4 and sIL-2rα (all p < .01). In addition, singing was associated with reductions in cortisol, beta-endorphin and oxytocin levels. This study provides preliminary evidence that singing improves mood state and modulates components of the immune system. Further work is needed to ascertain how this differs for more specific patient groups and whether repeat exposure could lead to meaningful, longitudinal effects. PMID:27170831

  9. Patient and carer identified factors which contribute to safety incidents in primary care: a qualitative study.

    PubMed

    Hernan, Andrea L; Giles, Sally J; Fuller, Jeffrey; Johnson, Julie K; Walker, Christine; Dunbar, James A

    2015-09-01

    Patients can have an important role in reducing harm in primary-care settings. Learning from patient experience and feedback could improve patient safety. Evidence that captures patients' views of the various contributory factors to creating safe primary care is largely absent. The aim of this study was to address this evidence gap. Four focus groups and eight semistructured interviews were conducted with 34 patients and carers from south-east Australia. Participants were asked to describe their experiences of primary care. Audio recordings were transcribed verbatim and specific factors that contribute to safety incidents were identified in the analysis using the Yorkshire Contributory Factors Framework (YCFF). Other factors emerging from the data were also ascertained and added to the analytical framework. Thirteen factors that contribute to safety incidents in primary care were ascertained. Five unique factors for the primary-care setting were discovered in conjunction with eight factors present in the YCFF from hospital settings. The five unique primary care contributing factors to safety incidents represented a range of levels within the primary-care system from local working conditions to the upstream organisational level and the external policy context. The 13 factors included communication, access, patient factors, external policy context, dignity and respect, primary-secondary interface, continuity of care, task performance, task characteristics, time in the consultation, safety culture, team factors and the physical environment. Patient and carer feedback of this type could help primary-care professionals better understand and identify potential safety concerns and make appropriate service improvements. The comprehensive range of factors identified provides the groundwork for developing tools that systematically capture the multiple contributory factors to patient safety. Published by the BMJ Publishing Group Limited. For permission to use (where not

  10. Assessing palliative care needs: views of patients, informal carers and healthcare professionals.

    PubMed

    McIlfatrick, Sonja

    2007-01-01

    This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.

  11. Social cognitive theory mediators of physical activity in a lifestyle program for cancer survivors and carers: findings from the ENRICH randomized controlled trial.

    PubMed

    Stacey, F G; James, E L; Chapman, K; Lubans, D R

    2016-04-14

    Despite increasing numbers of cancer survivors and evidence that diet and physical activity improves the health of cancer survivors, most do not meet guidelines. Some social cognitive theory (SCT)-based interventions have increased physical activity behavior, however few have used objective physical activity measures. The Exercise and Nutrition Routine Improving Cancer Health (ENRICH) randomized controlled trial reported a significant intervention effect for the primary outcome of pedometer-assessed step counts at post-test (8-weeks) and follow-up (20-weeks). The aim of this study was to test whether the SCT constructs operationalized in the ENRICH intervention were mediators of physical activity behavior change. Randomized controlled trial with 174 cancer survivors and carers assessed at baseline, post-test (8-weeks), and follow-up (20-weeks). Participants were randomized to the ENRICH six session face-to-face healthy lifestyle program, or to a wait-list control. Hypothesized SCT mediators of physical activity behavior change (self-efficacy, behavioral goal, outcome expectations, impediments, and social expectations) were assessed using valid and reliable scales. Mediation was assessed using the Preacher and Hayes SPSS INDIRECT macro. At eight weeks, there was a significant intervention effect on behavioral goal (A = 9.12, p = 0.031) and outcome expectations (A = 0.25, p = 0.042). At 20 weeks, the intervention had a significant effect on self-efficacy (A = 0.31, p = 0.049) and behavioral goal (A = 13.15, p = 0.011). Only changes in social support were significantly associated with changes in step counts at eight weeks (B = 633.81, p = 0.023). Behavioral goal was the only SCT construct that had a significant mediating effect on step counts, and explained 22 % of the intervention effect at 20 weeks (AB = 397.9, 95 % CI 81.5-1025.5). SCT constructs had limited impact on objectively-assessed step counts in a multiple health

  12. Reliability computation from reliability block diagrams

    NASA Technical Reports Server (NTRS)

    Chelson, P. O.; Eckstein, E. Y.

    1975-01-01

    Computer program computes system reliability for very general class of reliability block diagrams. Four factors are considered in calculating probability of system success: active block redundancy, standby block redundancy, partial redundancy, and presence of equivalent blocks in the diagram.

  13. The Effectiveness of an Internet Support Forum for Carers of People With Dementia: A Pre-Post Cohort Study

    PubMed Central

    McKechnie, Vicky; Stott, Josh

    2014-01-01

    Background The well-being of informal carers of people with dementia is an important public health issue. Caring for an elderly relative with dementia may be burdensome and stressful, and can negatively affect the carer’s social, family, and professional life. The combination of loss, the physical demands of caregiving, prolonged distress, and biological vulnerabilities of older carers may compromise their physical health, increase social isolation, and increase the risk of anxiety and depressive disorders. Caregiver stress is also linked to negative outcomes for the recipient of care and costs to society, including increased nursing home and hospital admissions. Consequently, carer support interventions are an important component of dementia care. Computer-mediated carer support offers a range of potential advantages compared to traditional face-to-face support groups, including accessibility and the possibility of tailoring to meet individual needs, but there has been little research on its effectiveness so far. Objective This mixed-methods study examined the impact of a well-respected UK-based online support forum for carers of people with dementia. Methods A total of 61 new forum users completed measures of anxiety (7-item Generalized Anxiety Disorder scale, GAD-7), depression (9-item Patient Health Questionnaire, PHQ-9), and quality of relationship with the person with dementia (Scale for the Quality of the Current Relationship in Caregiving, SQCRC), at baseline and again after 12 weeks of forum usage, within a pre-post design. In addition, 8 participants were interviewed about their experiences with using the forum. Results There was an improvement in the quality of the relationship with the person with dementia (SQCRC: P=.003). There was no change in users’ depression (PHQ-9) or anxiety (GAD-7) over the 12-week study period. Interview participants reported a range of positive experiences and benefits from using the forum. Limited negative experiences

  14. Alzheimer's disease in the United Kingdom: developing patient and carer support strategies to encourage care in the community.

    PubMed

    Hunter, R; McGill, L; Bosanquet, N; Johnson, N

    1997-09-01

    Alzheimer's disease is a growing challenge for care providers and purchasers. With the shift away from the provision of long term institutional care in most developed countries, there is a growing tendency for patients with Alzheimer's disease to be cared for at home. In the United Kingdom, this change of direction contrasts with the policies of the 1980s and 90s which focused more attention on controlling costs than on assessment of the needs of the patient and carer and patient management. In recent years, the resources available for management of Alzheimer's disease have focused on institutional care, coupled with drug treatment to control difficult behaviour as the disease progresses. For these reasons, the current system has led to crisis management rather than preventive support--that is, long term care for a few rather than assistance in the home before the crises occur and institutional care is needed. Despite recent innovations in the care of patients with Alzheimer's disease, the nature of the support that patients and carers receive is poorly defined and sometimes inadequate. As a result of the shift towards care in the community, the informal carer occupies an increasingly central role in the care of these patients and the issue of how the best quality of care may be defined and delivered is an issue which is now ripe for review. The objective of this paper is to redefine the type of support that patients and carers should receive so that the disease can be managed more effectively in the community. The needs of patients with Alzheimer's disease and their carers are many and this should be taken into account in defining the quality and structure of healthcare support. This paper shows how new initiatives, combined with recently available symptomatic drug treatment, can allow patients with Alzheimer's disease to be maintained at home for longer. This will have the dual impact of raising the quality of care for patients and improving the quality of life

  15. EQUIP training the trainers: an evaluation of a training programme for service users and carers involved in training mental health professionals in user-involved care planning.

    PubMed

    Fraser, C; Grundy, A; Meade, O; Callaghan, P; Lovell, K

    2017-08-01

    WHAT IS KNOWN ON THE SUBJECT?: UK NHS policy highlights the importance of user and carer involvement in health professional training. We know little about service user and carer motivations and experiences of accessing training courses for delivering training to health professionals and how well such courses prepare them for delivering training to healthcare professionals. 'Involvement' in training has often been tokenistic and too narrowly focused on preregistration courses. There is limited data on how best to prepare and support potential service user and carer trainers. WHAT DOES THIS PAPER ADD TO EXISTING KNOWLEDGE?: This study adds to the international literature by highlighting service user and carer motivations for accessing a training course for delivering training to health professionals. Service users and carers wanted to gain new skills and confidence in presentation/facilitation as well as to make a difference to healthcare practice. We also learned that service users desired different levels of involvement in training facilitation - some wanted to take a more active role than others. A one-size-fits-all approach is not always appropriate. Encountering resistance from staff in training was a previously unidentified challenge to service user and carers' experience of delivering training in practice and is a key challenge for trainers to address in future. Professional training involvement can be enhanced via specialist training such as the EQUIP training the trainers programme evaluated here. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: When training service users and carers to deliver training to mental health professionals, it is important that service users are equipped to deal with resistance from staff. It is important that service user and carer roles are negotiated and agreed prior to delivering training to healthcare professionals to accommodate individual preferences and allay anxieties. Training for service users and carers must be offered

  16. Acquiring a Pet Dog Significantly Reduces Stress of Primary Carers for Children with Autism Spectrum Disorder: A Prospective Case Control Study

    ERIC Educational Resources Information Center

    Wright, H. F.; Hall, S.; Hames, A.; Hardiman, J.; Mills, R.; Mills, D. S.

    2015-01-01

    This study describes the impact of pet dogs on stress of primary carers of children with Autism Spectrum Disorder (ASD). Stress levels of 38 primary carers acquiring a dog and 24 controls not acquiring a dog were sampled at: Pre-intervention (17 weeks before acquiring a dog), post-intervention (3-10 weeks after acquisition) and follow-up…

  17. Effectiveness of weekly cognitive stimulation therapy for people with dementia and the additional impact of enhancing cognitive stimulation therapy with a carer training program

    PubMed Central

    Cove, Jennifer; Jacobi, Nicola; Donovan, Helen; Orrell, Martin; Stott, Josh; Spector, Aimee

    2014-01-01

    Purpose of the study Cognitive stimulation therapy (CST) is a widely used, evidence-based intervention for people with dementia (PwD). Although designed as a 14 session, twice weekly intervention, many services in the UK deliver CST once a week for 14 weeks. However, this method of delivery has yet to be evaluated. In addition, CST does not include any formal carer training. This study aimed to evaluate the effectiveness of once weekly CST and determine any additional impact when enhanced with a carer training program. Design and methods A single blind, randomized controlled trial was conducted. Sixty eight PwD and their carers were recruited through three community Memory Assessment Services. PwD and their carers were randomized to one of three conditions: CST plus carer training, CST only, or a wait list control. PwD were administered standardized measures of cognition, quality of life, and quality of relationship with carer at baseline and the 15 week follow-up. Results There were no baseline differences across the three groups. At follow-up, there were no significant differences between PwD in the three groups on any outcomes. Implications Weekly CST with or without carer training may not be an effective form of delivery. Several possible explanations for the outcomes are proposed. Weekly CST may not offer the necessary “dose” required to combat decline, and equally the carer training may have been too brief to have made a difference. Services currently offering weekly CST should collect routine outcome data to support its use and provide practice-based evidence. PMID:25525349

  18. How people with dementia and carers understand and react to social functioning changes in mild dementia: a UK-based qualitative study.

    PubMed

    Singleton, David; Mukadam, Naaheed; Livingston, Gill; Sommerlad, Andrew

    2017-07-12

    To analyse people with dementia and their family carers' attribution of social changes in dementia and the consequences of these attributions. Qualitative study, using a semi-structured interview guide. Individual interviews continued to theoretical saturation. Two researchers independently analysed interview transcripts. People with mild dementia and family carers purposively selected from London-based memory services for diverse demographic characteristics to encompass a range of experiences. Attribution of social changes experienced by the person with dementia and the consequences of these attributions. We interviewed nine people with dementia and nine carers, encompassing a range of age, ethnicity and educational backgrounds.Both groups reported that the person with dementia had changed socially. People with dementia tended to give one or two explanations for social change, but carers usually suggested several. People with dementia were often socially embarrassed or less interested in going out, and they or their relatives' physical illness or fear of falls led to reduced social activity. Carers often attributed not going out to a choice or premorbid personality. Carers found that their relative needed more support to go out than they could give and carers needed time to themselves because of carer stress or other problems from which they shielded the person with dementia. Additionally, there was decreased opportunity to socialise, as people were bereaved of friends and family. Participants acknowledged the direct impact of dementia symptoms on their ability to socially engage but sometimes decided to give up socialising when they knew they had dementia. There were negative consequences from social changes being attributed to factors such as choice, rather than dementia. Clinicians should ask about social changes in people with dementia. Explaining that these may be due to dementia and considering strategies to overcome them may be beneficial. © Article author

  19. Acquiring a Pet Dog Significantly Reduces Stress of Primary Carers for Children with Autism Spectrum Disorder: A Prospective Case Control Study

    ERIC Educational Resources Information Center

    Wright, H. F.; Hall, S.; Hames, A.; Hardiman, J.; Mills, R.; Mills, D. S.

    2015-01-01

    This study describes the impact of pet dogs on stress of primary carers of children with Autism Spectrum Disorder (ASD). Stress levels of 38 primary carers acquiring a dog and 24 controls not acquiring a dog were sampled at: Pre-intervention (17 weeks before acquiring a dog), post-intervention (3-10 weeks after acquisition) and follow-up…

  20. Euthanasia and physician-assisted suicide in dementia: A qualitative study of the views of former dementia carers.

    PubMed

    Tomlinson, Emily; Spector, Aimee; Nurock, Shirley; Stott, Joshua

    2015-09-01

    Despite media and academic interest on assisted dying in dementia, little is known of the views of those directly affected. This study explored the views of former carers on assisted dying in dementia. This was a qualitative study using thematic analysis. A total of 16 former carers of people with dementia were recruited through national dementia charities and participated in semi-structured interviews. While many supported the individual's right to die, the complexity of assisted dying in dementia was emphasized. Existential, physical, psychological and psychosocial aspects of suffering were identified as potential reasons to desire an assisted death. Most believed it would help to talk with a trained health professional if contemplating an assisted death. Health workers should be mindful of the holistic experience of dementia at the end of life. The psychological and existential aspects of suffering should be addressed, as well as relief of physical pain. Further research is required. © The Author(s) 2015.

  1. Employed Carers' Empathy Towards People with Intellectual Disabilities: The Development of a New Measure and Some Initial Theory.

    PubMed

    Collins, Kirsten; Gratton, Caroline; Heneage, Celia; Dagnan, Dave

    2017-01-01

    This study aimed to develop a self-report measure of paid caregivers' empathy towards people with intellectual disabilities. Following questionnaire develop-ment, 194 staff working in services for people with intellectual disabilities completed self-report questionnaires, including the new empathy measure. The measure's factor structure and psychometric properties were investigated. A three factor solution suggested two key processes in empathizing: experiencing commonality between one's own and people with intellectual disabilities' psychological experiences and efforts to attune to their internal worlds. The final factor represented whether carers find it challenging to empathize. Correlations with beliefs about the self and others in caregiving relationships provided initial evidence of validity, although further investigation is needed. The most salient processes in empathizing with people with intellectual disabilities may be different from empathy in other contexts. Establishing determinants of carer empathy may facilitate the development of psychological interventions to promote and enhance this important quality. © 2015 John Wiley & Sons Ltd.

  2. Accessibility and equity of health and social care services: exploring the views and experiences of Bangladeshi carers in South Wales, UK.

    PubMed

    Merrell, Joy; Kinsella, Faye; Murphy, Fiona; Philpin, Sue; Ali, Amina

    2006-05-01

    There is a paucity of information regarding the extent and nature of caring provided by minority ethnic communities. The proportion of older people from these communities will dramatically increase in the next 20 years, which will be accompanied by increasing health and social care needs and an increased demand for carers. A qualitative, exploratory study was conducted to identify the health and social care needs of informal carers, who were caring for a dependent adult from a Bangladeshi community in South Wales, UK. This paper focuses on Bangladeshi carers' access to formal support services provided by the statutory, private and voluntary sectors to assist them with their caring responsibilities. The findings are based on data collected using face-to-face, focused interviews with 20 Bangladeshi carers. Purposive and snowball sampling were used to recruit the sample. The data were analysed using thematic content analysis. The dimensions of accessibility and equity of quality of care were drawn upon to aid understanding of the findings. Bangladeshi carers faced a number of barriers in accessing health and social service provision, which impeded uptake of these services. Additionally, there was evidence of inequity in service provision. Recommendations for improving the accessibility of health and social care services are proposed, which may assist in promoting more equitable services for carers from the Bangladeshi community.

  3. 'You are just left to get on with it': qualitative study of patient and carer experiences of the transition to secondary progressive multiple sclerosis.

    PubMed

    Davies, F; Edwards, A; Brain, K; Edwards, M; Jones, R; Wallbank, R; Robertson, N P; Wood, F

    2015-07-22

    Although the transition to secondary progressive multiple sclerosis (SPMS) is known to be a period of uncertainty for clinicians, who may find progressive disease challenging to objectively identify, little research has explored the experiences of patients and carers specifically during this transition period. Our objective was to explore what patients and their carers understand about their disease stage and describe their experiences and perspectives on the transition to SPMS. Semistructured qualitative interviews and subsequent validation focus groups were analysed using inductive thematic analysis. South East Wales, UK. 20 patients with MS and 13 carers were interviewed. Eight patients and two carers participated in focus groups. Four main themes around disease progression were identified. 'Realisation' describes how patients came to understand they had SPMS while 'reaction' describes their response to this realisation. The 'realities' of living with SPMS, including dealing with the healthcare system during this period, were described along with 'future challenges' envisaged by patients and carers. Awareness that the transition to SPMS has occurred, and subsequent emotional reactions and coping strategies, varied widely between patients and their carers. The process of diagnosing the transition was often not transparent and some individuals wanted information to help them understand what the transition to SPMS meant for them. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  4. Feasibility Testing and Refinement of a Supportive Educational Intervention for Carers of Patients with High-Grade Glioma - a Pilot Study.

    PubMed

    Halkett, Georgia K B; Lobb, Elizabeth A; Miller, Lisa; Shaw, Thérèse; Moorin, Rachael; Long, Anne; King, Anne; Clarke, Jenny; Fewster, Stephanie; Nowak, Anna K

    2017-02-11

    The aim of this pilot study was to test the feasibility and acceptability of a family carer intervention for carers of patients with high-grade glioma (HGG). The intervention consisted of: (1) an initial telephone assessment of carer needs; (2) a personalised tabbed resource file; (3) nurse-led home visit; and (4) ongoing telephone support. Two consumer representatives reviewed the intervention resources. The intervention was then piloted with participants who were the primary carer for patients undergoing treatment for HGG in Western Australia. Two consumers provided feedback on the resource, and 10 carers participated in the pilot. Positive feedback was received about the resource manual and intervention. Suggestions were also made for changes which were implemented into the trial. The surveys were shortened based on feedback. Participants identified a large range of issues during nursing assessments which would not otherwise be identified or addressed for carers receiving routine care. As a result of providing the intervention, the nurse was able to make referrals to address needs that were identified. This pilot study enabled us to refine and test the Care-IS intervention and test the feasibility and acceptability of proposed survey instruments. We were also able to estimate recruitment and retention and the overall study timeline required for the randomised controlled trial we are now conducting. It has also demonstrated the role of the nurse who delivered the intervention and allowed us to refine communication and referral pathways.

  5. Dying at home of cancer: whose needs are being met? The experience of family carers and healthcare professionals (a multiperspective qualitative study).

    PubMed

    Pottle, Jackie; Hiscock, Julia; Neal, Richard D; Poolman, Marlise

    2017-01-16

    Supporting patients to die in the place of their choosing is an important aspect of end of life care. Our study set out to answer the question: 'How does the home environment influence perceptions of quality of death, and the experience of caring for the dying at home, for family carers and healthcare professionals (HCPs)? A qualitative approach, using multiperspective interviews with bereaved family carers (n=15) and a nominated HCP (n=13) ensured depth of insight gained into supporting a home death. The semistructured interviews were audio recorded, transcribed verbatim and analysed using Framework. We found that the home environment enabled normality, a sense of control and individualised care which family carers often perceived as contributing towards a good death. However, the home environment created challenges for both family carers and HCPs, due to the differing and at times conflicting needs of the dying person and their family carers. We have shed light on the complexity of balancing the demands and the satisfaction of caring for someone dying at home. The ability to manage these conflicting needs influenced whether carers perceived the home setting as the best place for the person to have received care in their last days of life. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  6. Community day care with carer support versus usual nursing home-based day care: effects on needs, behavior, mood, and quality of life of people with dementia.

    PubMed

    van Haeften-van Dijk, A Marijke; Meiland, Franka J M; Hattink, Bart J J; Bakker, Ton J E M; Dröes, Rose-Marie

    2016-04-01

    Several studies have shown that the combined community-based Meeting Centres Support Programme (MCSP) for people with mild to moderate dementia and their carers were more effective in reducing behavior and mood problems of people with dementia than traditional nursing home-based (NH) day care. We therefore investigated in this study whether community-based (CO) psychogeriatric day care for people with mild to severe dementia combined with carer support (in accordance with the MCSP), is more effective than regular NH day care. A pre-test-post-test control group design was used to compare the effect of CO and NH day care on care needs, behavior and mood problems, and quality of life of people with dementia. 138 dyads of people with mild to severe dementia and family carers participated in the study: 70 from (new and longer existing) CO day cares (experimental group), and 68 from NH day cares (control group). ANCOVAs were performed at post-tests, including baseline data as covariates. After six months, no overall differences on outcome measures were found between CO and NH day cares. However, participants of recently started CO day cares showed fewer neuropsychiatric symptoms, whereas carers in the longer existing CO day cares reported fewer care needs compared to the control group (large effects). Persons with dementia cohabiting with their carer benefitted most from CO day care. This study shows that combined CO day care has promising added value compared to NH day care, especially for participants with dementia cohabiting with their carer.

  7. Reliability model generator

    NASA Technical Reports Server (NTRS)

    McMann, Catherine M. (Inventor); Cohen, Gerald C. (Inventor)

    1991-01-01

    An improved method and system for automatically generating reliability models for use with a reliability evaluation tool is described. The reliability model generator of the present invention includes means for storing a plurality of low level reliability models which represent the reliability characteristics for low level system components. In addition, the present invention includes means for defining the interconnection of the low level reliability models via a system architecture description. In accordance with the principles of the present invention, a reliability model for the entire system is automatically generated by aggregating the low level reliability models based on the system architecture description.

  8. Discrimination and Other Barriers to Accessing Health Care: Perspectives of Patients with Mild and Moderate Intellectual Disability and Their Carers

    PubMed Central

    Ali, Afia; Scior, Katrina; Ratti, Victoria; Strydom, Andre; King, Michael; Hassiotis, Angela

    2013-01-01

    Background People with intellectual disability have a higher prevalence of physical health problems but often experience disparities in accessing health care. In England, a number of legislative changes, policies and recommendations have been introduced to improve health care access for this population. The aim of this qualitative study was to examine the extent to which patients with intellectual disability and their carers experience discrimination or other barriers in accessing health services, and whether health care experiences have improved over the last decade years. Method and Main Findings Twenty nine participants (14 patient and carer dyads, and one carer) took part in semi-structured interviews. The interviews were audio-taped and transcribed and analysed using thematic analysis. Eight themes were identified. Half the participants thought that the patient had been treated unfairly or had been discriminated against by health services. There were accounts of negative staff attitudes and behaviour, and failure of services to make reasonable adjustments. Other barriers included problems with communication, and accessing services because of lack of knowledge of local services and service eligibility issues; lack of support and involvement of carers; and language problems in participants from minority ethnic groups. Most participants were able to report at least one example of good practice in health care provision. Suggestions for improving services are presented. Conclusion Despite some improvements to services as a result of health policies and recommendations, more progress is required to ensure that health services make reasonable adjustments to reduce both direct and indirect discrimination of people with intellectual disability. PMID:23951026

  9. Self-care and end of life care--patients' and carers' experience a qualitative study utilising serial triangulated interviews.

    PubMed

    Johnston, Bridget Margaret; Milligan, Stuart; Foster, Claire; Kearney, Nora

    2012-08-01

    This study aimed to understand patient and carer experiences of end of life care and to explore how patients care for themselves at the end of life in Scotland. (1) From the perspectives of patients and carers, what are their experience of advanced cancer and end of life care? (2) What self-care strategies enable patient and carers to cope with their end of life care? This paper reports a qualitative study using in-depth, unstructured serial interviews involving collaboration with and participation of people affected by advanced cancer. The study was a 2-year, three-phase study with multiple methods of data collection. The study was conducted in the Highlands and West of Scotland including rural, remote and socially deprived areas. Patient experience data were collected from 20 patients as well as their main carer and the health professional who they perceived had given them the most support. Triangulating data in this way allowed the totality of the patient experience to be captured. A total of 71 interviews were conducted. Data were analysed both within and across cases using framework analysis with the aid of QSR NVIVO 7. Maintaining normality and preparing for death were the two most important areas, for the patients in the study, as far as their self-care was concerned. Patients wished support that enabled them to maintain their independence and remain at home. People managed their illness both physically and emotionally; managing and adjusting to their lack of independence and keeping control were keys to most participants. Self-care is important to this group of people. People receiving end of life care want to and are able to engage in research. The findings are timely and relevant to current changes in palliative care policy and practice.

  10. Individual music therapy for managing neuropsychiatric symptoms for people with dementia and their carers: a cluster randomised controlled feasibility study.

    PubMed

    Hsu, Ming Hung; Flowerdew, Rosamund; Parker, Michael; Fachner, Jörg; Odell-Miller, Helen

    2015-07-18

    Previous research highlights the importance of staff involvement in psychosocial interventions targeting neuropsychiatric symptoms of dementia. Music therapy has shown potential effects, but it is not clear how this intervention can be programmed to involve care staff within the delivery of patients' care. This study reports initial feasibility and outcomes from a five month music therapy programme including weekly individual active music therapy for people with dementia and weekly post-therapy video presentations for their carers in care homes. 17 care home residents and 10 care staff were randomised to the music therapy intervention group or standard care control group. The cluster randomised, controlled trial included baseline, 3-month, 5-month and post-intervention 7-month measures of residents' symptoms and well-being. Carer-resident interactions were also assessed. Feasibility was based on carers' feedback through semi-structured interviews, programme evaluations and track records of the study. The music therapy programme appeared to be a practicable and acceptable intervention for care home residents and staff in managing dementia symptoms. Recruitment and retention data indicated feasibility but also challenges. Preliminary outcomes indicated differences in symptoms (13.42, 95 % CI: [4.78 to 22.07; p = 0.006]) and in levels of wellbeing (-0.74, 95 % CI: [-1.15 to -0.33; p = 0.003]) between the two groups, indicating that residents receiving music therapy improved. Staff in the intervention group reported enhanced caregiving techniques as a result of the programme. The data supports the value of developing a music therapy programme involving weekly active individual music therapy sessions and music therapist-carer communication. The intervention is feasible with modifications in a more rigorous evaluation of a larger sample size. Clinicaltrials.gov, number NCT01744600.

  11. Technology-based tools and services for people with dementia and carers: Mapping technology onto the dementia care pathway.

    PubMed

    Lorenz, Klara; Freddolino, Paul P; Comas-Herrera, Adelina; Knapp, Martin; Damant, Jacqueline

    2017-01-01

    The extent to which technology may be able to support people with dementia and their carers along the care pathway and in different care settings is of interest to policy makers and governments. In this paper we provide an overview of the role of technology in dementia care, treatment and support by mapping existing technologies - by function, target user and disease progression. Technologies identified are classified into seven functions: memory support, treatment, safety and security, training, care delivery, social interaction and other. Different groups of potential users are distinguished: people with mild cognitive impairment and early stages of dementia, people with moderate to severe dementia and unpaid carers and health- and social care professionals. We also identified the care settings, in which the technologies are used (or for which the technologies are developed): at home in the community and in institutional care settings. The evidence has been drawn from a rapid review of the literature, expert interviews and web and social media searches. The largest number of technologies identified aim to enhance the safety and security of people with dementia living in the community. These devices are often passive monitors, such as smoke detectors. Other safety interventions, such as panic buttons, require active intervention. The second largest number of interventions aims to enhance people's memory and includes global positioning systems devices and voice prompts. These technologies mostly target people in the early stages of dementia. A third group focusing on treatment and care delivery emerged from the literature. These interventions focus on technology-aided reminiscence or therapeutic aspects of care for people with dementia and their carers. While the review found a range of technologies available for people with dementia and carers there is very little evidence of widespread practical application. Instead, it appears that stakeholders frequently rely

  12. Heart failure and chronic obstructive pulmonary disease multimorbidity at hospital discharge transition: a study of patient and carer experience.

    PubMed

    Doos, Lucy; Bradley, Eleanor; Rushton, Claire A; Satchithananda, Duwarakan; Davies, Simon J; Kadam, Umesh T

    2015-12-01

    Care for patients with multimorbidity represents a major challenge not only for patients and carers but to health-care systems. Hospital discharge transition is a critical point at which challenges for multimorbidity may amplify. The main objective of the study was to explore the experiences of heart failure (HF) and chronic obstructive pulmonary disease (COPD) multimorbid patients and their carers on hospital discharge. Secondary objectives included identification of gaps in the health care of multimorbidity and optimal solutions from patients and carers' perspectives. Mixed methods were applied to collect data using patient self-completion questionnaire from an adapted version of the American Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey and in-depth interviews. Participants were recruited from two cardiology and respiratory wards at a large regional hospital in England, and all had a multimorbidity diagnosis of COPD and HF. Findings revealed that patients experienced difficulties in their communication with health-care professionals and there were specific challenges with information about medication. Qualitative descriptions revealed that experiences fell into two main categories: (i) information transfer to patients with multimorbidity in terms of issues with medication and clarity of information on diagnosis and (ii) communication and continuity of care after discharge. Respondents highlighted gaps in the management of patients with multimorbidity of HF and COPD at the critical time of care transition. They suggested the need for a comprehensive, coordinated and integrated approach to incorporate patients, carers and staff preferences for treatment on discharge from hospital. © 2014 John Wiley & Sons Ltd.

  13. The impact of volunteering on the volunteer: findings from a peer support programme for family carers of people with dementia.

    PubMed

    Charlesworth, Georgina; Sinclair, James B; Brooks, Alice; Sullivan, Theresa; Ahmad, Shaheen; Poland, Fiona

    2017-03-01

    With an ageing population, there are increasing numbers of experienced family carers (FCs) who could provide peer support to newer carers in a similar care situation. The aims of this paper are to: (i) use a cross-sectional study design to compare characteristics of volunteers and recipients of a peer support programme for FCs of people with dementia, in terms of demographic background, social networks and psychological well-being; and (ii) use a longitudinal study design to explore the overall impact of the programme on the volunteers in terms of psychological well-being. Data were collected from programmes run in Norfolk, Northamptonshire, Berkshire and four London boroughs between October 2009 and March 2013. The volunteer role entailed empathic listening and encouragement over a 10-month period. Both carer support volunteers (N = 87) and recipient FCs (N = 109) provided baseline demographic information. Data on social networks, personal growth, self-efficacy, service use and well-being (SF-12; EuroQol Visual Analogue Scale; Hospital Anxiety and Depression Scale; Control, Autonomy, Self-Realisation, Pleasure-19) were collected prior to the start of the intervention (N = 43) and at either 3- to 5 month or 10 month follow-up (N = 21). Volunteers were more likely than recipients of support to be female and to have cared for a parent/grandparent rather than spouse. Volunteers were also more psychologically well than support recipients in terms of personal growth, depression and perceived well-being. The longitudinal analysis identified small but significant declines in personal growth and autonomy and a positive correlation between the volunteers' duration of involvement and perceived well-being. These findings suggest that carers who volunteer for emotional support roles are resilient and are at little psychological risk from volunteering.

  14. Helping someone with problem drug use: a Delphi consensus study of consumers, carers, and clinicians.

    PubMed

    Kingston, Anna H; Morgan, Amy J; Jorm, Anthony F; Hall, Kate; Hart, Laura M; Kelly, Claire M; Lubman, Dan I

    2011-01-05

    Problem use of illicit drugs (i.e. drug abuse or dependence) is associated with considerable health and social harms, highlighting the need for early intervention and engagement with health services. Family members, friends and colleagues play an important role in supporting and assisting individuals with problem drug use to seek professional help, however there are conflicting views about how and when such support should be offered. This paper reports on the development of mental health first aid guidelines for problem drug use in adults, to help inform community members on how to assist someone developing problem drug use or experiencing a drug-related crisis. A systematic review of the scientific and lay literature was conducted to develop a 228-item survey containing potential first-aid strategies to help someone developing a drug problem or experiencing a drug-related crisis. Three panels of experts (29 consumers, 31 carers and 27 clinicians) were recruited from Australia, Canada, New Zealand, the United Kingdom, and the United States. Panel members independently rated the items over three rounds, with strategies reaching consensus on importance written into the guidelines. The overall response rate across three rounds was 80% (86% consumers, 81% carers, 74% clinicians). 140 first aid strategies were endorsed as essential or important by 80% or more of panel members. The endorsed strategies provide information and advice on what is problem drug use and its consequences, how to approach a person about their problem drug use, tips for effective communication, what to do if the person is unwilling to change their drug use, what to do if the person does (or does not) want professional help, what are drug-affected states and how to deal with them, how to deal with adverse reactions leading to a medical emergency, and what to do if the person is aggressive. The guidelines provide a consensus-based resource for community members who want to help someone with a drug

  15. Helping someone with problem drug use: a delphi consensus study of consumers, carers, and clinicians

    PubMed Central

    2011-01-01

    Background Problem use of illicit drugs (i.e. drug abuse or dependence) is associated with considerable health and social harms, highlighting the need for early intervention and engagement with health services. Family members, friends and colleagues play an important role in supporting and assisting individuals with problem drug use to seek professional help, however there are conflicting views about how and when such support should be offered. This paper reports on the development of mental health first aid guidelines for problem drug use in adults, to help inform community members on how to assist someone developing problem drug use or experiencing a drug-related crisis. Methods A systematic review of the scientific and lay literature was conducted to develop a 228-item survey containing potential first-aid strategies to help someone developing a drug problem or experiencing a drug-related crisis. Three panels of experts (29 consumers, 31 carers and 27 clinicians) were recruited from Australia, Canada, New Zealand, the United Kingdom, and the United States. Panel members independently rated the items over three rounds, with strategies reaching consensus on importance written into the guidelines. Results The overall response rate across three rounds was 80% (86% consumers, 81% carers, 74% clinicians). 140 first aid strategies were endorsed as essential or important by 80% or more of panel members. The endorsed strategies provide information and advice on what is problem drug use and its consequences, how to approach a person about their problem drug use, tips for effective communication, what to do if the person is unwilling to change their drug use, what to do if the person does (or does not) want professional help, what are drug-affected states and how to deal with them, how to deal with adverse reactions leading to a medical emergency, and what to do if the person is aggressive. Conclusions The guidelines provide a consensus-based resource for community members

  16. Coping strategies and styles of family carers of persons with enduring mental illness: a mixed methods analysis.

    PubMed

    Kartalova-O'Doherty, Yulia; Doherty, Donna Tedstone

    2008-03-01

    A qualitative exploratory study investigated the experiences and needs of family carers of persons with enduring mental illness in Ireland. The current mixed-methods secondary study used content analysis and statistical procedures to identify and explore the coping strategies emerging from the original interviews. The majority of family carers reported use of active behavioural coping strategies, sometimes combined with active cognitive or avoidance strategies. The percentage of cares reporting use of active cognitive strategies was the lowest among those whose ill relative lived in their home, and the highest among those whose relative lived independently. Participants with identified active cognitive strategies often reported that their relative was employed or in training. Participants who reported use of avoidance strategies were significantly younger than participants who did not report use of such strategies. The lowest percentage of avoidance strategies was among participants whose ill relative lived independently, whereas the highest was among carers whose relative lived in their home. The findings of this study highlight the importance of a contextual approach to studying coping styles and processes. Further research questions and methodological implications are discussed.

  17. From Provider to Enabler of Care? Reconfiguring Local Authority Support for Older People and Carers in Leeds, 2008 to 2013

    PubMed Central

    Yeandle, Sue

    2016-01-01

    Abstract This article explores developments in the support available to older people and carers (i.e., caregivers) in the city of Leeds, United Kingdom, and examines provision changes during a period characterized by unprecedented resource constraint and new developments in national-local governance. Using documentary evidence, official statistics, and findings from recent studies led by the author, the effects of these changes on service planning and delivery and the approach taken by local actors to mitigate their impact are highlighted. The statistical data show a marked decline in some types of services for older people during a 5-year period during which the city council took steps to mobilize citizens and develop new services and system improvements. The analysis focuses on theories of social quality as a framework for analysis of the complex picture of change related to service provision. It concludes that although citizen involvement and consultations exerted a positive influence in delivering support to some older people and carers, research over a longer timescale is needed to show if these changes are adequate to protect older people and carers from the effects of ongoing budgetary constraints. PMID:27019540

  18. Guilt, shame and expressed emotion in carers of people with long-term mental health difficulties: A systematic review.

    PubMed

    Cherry, Mary Gemma; Taylor, Peter James; Brown, Stephen Lloyd; Rigby, Jake Wilfred; Sellwood, William

    2017-03-01

    Expressed emotion (EE) is a global index of familial emotional climate, whose primary components are emotional over-involvement (EOI) and critical comments (CC)/hostility. There is a strong theoretical rationale for hypothesising that carers' guilt and shame may be differentially associated with their EOI and CC/hostility respectively. This systematic review investigates the magnitude of these theorised associations in carers of people with long-term mental health difficulties. Electronic searches (conducted in May 2016 across Medline, CINAHL, Embase, PsycINFO and ProQuest) were supplemented with iterative hand searches. Ten papers, reporting data from eight studies, were included. Risk of bias was assessed using a standardised checklist. Relevant data were extracted and synthesised narratively. EOI was positively associated with both guilt and shame, whereas CC/hostility was positively associated with shame. The strength of associations varied depending on whether or not guilt and shame were assessed within the context of the caring relationship. Based on these data, an argument can be made for the refinement, development and evaluation of systemic and individual interventions designed to target carers' guilt and shame. However, more research is needed to clarify the strength of these associations and their direction of effect before firm conclusions can be drawn.

  19. Explaining the effects of symptom attribution by carers on help-seeking for individuals living with dementia.

    PubMed

    Feldman, Lisa; Wilcock, Jane; Thuné-Boyle, Ingela; Iliffe, Steve

    2017-04-01

    This study investigated the effects of carer attributions on help-seeking behaviour for people with dementia using interviews with 84 carers recruited through general practice. Memory loss was the most commonly reported first symptom but psychological and behavioural symptoms were also common at onset. In over a third of individuals help-seeking was delayed for a mean of 25 months (range 6-69, SD 19.3). Help-seeking between those who attributed symptoms to dementia, or to unknown causes, and those who attributed symptoms to personality, ageing, life events or other illnesses was statistically significant ( p < 0.001). No statistically significant associations between help-seeking and patient or carer characteristics were found. There is a need to raise public awareness about the range of symptoms suggestive of dementia. Assumptions that age and other conditions may be the likely cause of an individual's cognitive decline needs to be challenged by practitioners. Attribution of symptoms to characteristics other than dementia delays help-seeking.

  20. Moderated Online Social Therapy: A Model for Reducing Stress in Carers of Young People Diagnosed with Mental Health Disorders.

    PubMed

    Gleeson, John; Lederman, Reeva; Koval, Peter; Wadley, Greg; Bendall, Sarah; Cotton, Sue; Herrman, Helen; Crisp, Kingsley; Alvarez-Jimenez, Mario

    2017-01-01

    Family members caring for a young person diagnosed with the onset of mental health problems face heightened stress, depression, and social isolation. Despite evidence for the effectiveness of family based interventions, sustaining access to specialist family interventions is a major challenge. The availability of the Internet provides possibilities to expand and sustain access to evidence-based psychoeducation and personal support for family members. In this paper we describe the therapeutic model and the components of our purpose-built moderated online social therapy (MOST) program for families. We outline the background to its development, beginning with our face-to-face EPISODE II family intervention, which informed our selection of therapeutic content, and the integration of recent developments in positive psychology. Our online interventions for carers integrate online therapy, online social networking, peer and expert support, and online social problem solving which has been designed to reduce stress in carers. The initial version of our application entitled Meridian was shown to be safe, acceptable, and feasible in a feasibility study of carers of youth diagnosed with depression and anxiety. There was a significant reduction in self-reported levels of stress in caregivers and change in stress was significantly correlated with use of the system. We have subsequently launched a cluster RCT for caregivers with a relative diagnosed with first-episode psychosis. Our intervention has the potential to improve access to effective specialist support for families facing the onset of serious mental health problems in their young relative.

  1. A protocol for a systematic review of effective home support to people with dementia and their carers: components and impacts.

    PubMed

    Clarkson, Paul; Giebel, Clarissa M; Larbey, Matthew; Roe, Brenda; Challis, David; Hughes, Jane; Jolley, David; Poland, Fiona; Russell, Ian

    2016-01-01

    To review the evidence for home support approaches directed at tertiary prevention; ameliorating difficulties and enhancing well-being. With population ageing dementia represents a significant care challenge with 60% of people with dementia living at home. However, little is known about existing forms of home support and their relative effectiveness. A two-stage design: First, an overview of systematic reviews of psychosocial interventions for dementia to identify their components; second, a systematic review of the effectiveness of home support interventions to older people with dementia/their carers. We will search electronic databases using specific search terms with additional searches of other known studies. Data will be extracted by two reviewers according to pre-determined categories. An initial synthesis will elicit components of interventions from stage 1 and operationalize them in terms of specific techniques. These will then be used in synthesis of data in stage 2, to determine the extent to which each home support intervention relies on these components and distill evidence concerning outcomes. Studies from stage 2 are expected to be methodologically diverse; if so, a narrative approach to synthesis will be taken. Study findings will be explored with Patient, Public and Carer Involvement groups. The review seeks to develop a theory of home support: how and why interventions may work; in what contexts; and for whom. We will identify effective home support approaches, informing policy-makers and establishing how they might be experienced by people with dementia and their carers. © 2015 John Wiley & Sons Ltd.

  2. Accessing care summaries at point-of-care:Implementation of mobile devices for personal carers in aged care.

    PubMed

    Brimelow, Rachel E; Gibney, Annie; Meakin, Suzanne; Wollin, Judy A

    2017-04-01

    Continued development of mobile technology now allows access to information at the point-of-care. This study was conducted to evaluate the use of one such tool on a mobile device, from the carer perspective. Caregivers across 12 aged-care facilities were supplied mobile devices to access a Picture Care Plan (PCP), a specific tool designed around the role of the personal carer. An anonymous questionnaire was subsequently completed by 85 carers with questions relating to participants' experience. Perceived helpfulness of the PCP at the point-of-care was high (87%). A significant number of participants believed the use of the PCP increased resident safety and quality of care (76%). Practical components related to the carrying of the device, network speed and the requirement to maintain communication with senior members of staff to ascertain updates were also expressed by participants. Findings suggest that staff are receptive to adoption of mobile devices to access care directives at the point-of-care and that the technology is useful.

  3. Reliability Generalization: "Lapsus Linguae"

    ERIC Educational Resources Information Center

    Smith, Julie M.

    2011-01-01

    This study examines the proposed Reliability Generalization (RG) method for studying reliability. RG employs the application of meta-analytic techniques similar to those used in validity generalization studies to examine reliability coefficients. This study explains why RG does not provide a proper research method for the study of reliability,…

  4. Reliability Generalization: "Lapsus Linguae"

    ERIC Educational Resources Information Center

    Smith, Julie M.

    2011-01-01

    This study examines the proposed Reliability Generalization (RG) method for studying reliability. RG employs the application of meta-analytic techniques similar to those used in validity generalization studies to examine reliability coefficients. This study explains why RG does not provide a proper research method for the study of reliability,…

  5. Reliability. ERIC Digest.

    ERIC Educational Resources Information Center

    Rudner, Lawrence M.; Schafer, William D.

    This digest discusses sources of error in testing, several approaches to estimating reliability, and several ways to increase test reliability. Reliability has been defined in different ways by different authors, but the best way to look at reliability may be the extent to which measurements resulting from a test are characteristics of those being…

  6. [Information and communication technology interventions supporting carers of people with Alzheimer's disease: a literature review].

    PubMed

    Wu, Ya-Huei; Faucounau, Véronique; de Rotrou, Jocelyne; Riguet, Mathilde; Rigaud, Anne-Sophie

    2009-09-01

    Caregivers of patients with Alzheimer's disease or related disorders are exposed to many stress factors which increase the risk of developing physical and psychological disturbances. To limit these negative effects, different psychosocial interventions for carers have been proposed. With progress in technologies, telephone or the internet can offer flexible and tailored means to deliver this kind of interventions. In this literature review, we listed and analysed the articles devoted to this topic. Sixteen papers concerning nine intervention programs were selected. The analysis shows that the internet, as a means to deliver an intervention programme, is more interactive, attractive and less intrusive than telephone. Efficacy of the interventions via this kind of technologies can be compared to that observed in face to face ones: despite weak methodology and inconsistent outcomes of the studies, they showed some improvement in burden, anxiety, depression and self-efficacy. Finally, before implementation of this kind of technologies, it is necessary to test learnability, adaptability and acceptability. Usability of a technology is a key factor for its adoption and efficacy.

  7. Information and communication systems for the assistance of carers based on ACTION.

    PubMed

    Kraner, M; Emery, D; Cvetkovic, S R; Procter, P; Smythe, C

    1999-01-01

    Recent advances in telecommunication technologies allow the design of information and communication systems for people who are caring for others in the home as family members or as professionals in the health or community centres. The present paper analyses and classifies the information flow and maps it to an information life cycle, which governs the design of the deployed hardware, software and the data-structure. This is based on the initial findings of ACTION (assisting carers using telematics interventions to meet older persons' needs) a European Union funded project. The proposed information architecture discusses different designs such as centralized or decentralized Web and Client server solutions. A user interface is developed reflecting the special requirements of the targeted user group, which influences the functionality and design of the software, data architecture and the integrated communication system using video-conferencing. ACTION has engineered a system using plain Web technology based on HTML, extended with JavaScript and ActiveX and a software switch enabling the integration of different types of videoconferencing and other applications providing manufacturer independence.

  8. Childhood disability in Turkana, Kenya: Understanding how carers cope in a complex humanitarian setting

    PubMed Central

    Nyapera, Velma; Mwenda, Victoria; Kisia, James; Rono, Hilary; Palmer, Jennifer

    2016-01-01

    Background Although the consequences of disability are magnified in humanitarian contexts, research into the difficulties of caring for children with a disability in such settings has received limited attention. Methods Based on in-depth interviews with 31 families, key informants and focus group discussions in Turkana, Kenya, this article explores the lives of families caring for children with a range of impairments (hearing, vision, physical and intellectual) in a complex humanitarian context characterised by drought, flooding, armed conflict, poverty and historical marginalisation. Results The challenging environmental and social conditions of Turkana magnified not only the impact of impairment on children, but also the burden of caregiving. The remoteness of Turkana, along with the paucity and fragmentation of health, rehabilitation and social services, posed major challenges and created opportunity costs for families. Disability-related stigma isolated mothers of children with disabilities, especially, increasing their burden of care and further limiting their access to services and humanitarian programmes. In a context where social systems are already stressed, the combination of these factors compounded the vulnerabilities faced by children with disabilities and their families. Conclusion The needs of children with disabilities and their carers in Turkana are not being met by either community social support systems or humanitarian aid programmes. There is an urgent need to mainstream disability into Turkana services and programmes. PMID:28730061

  9. Identifying changes in the support networks of end-of-life carers using social network analysis.

    PubMed

    Leonard, Rosemary; Horsfall, Debbie; Noonan, Kerrie

    2015-06-01

    End-of-life caring is often associated with reduced social networks for both the dying person and for the carer. However, those adopting a community participation and development approach, see the potential for the expansion and strengthening of networks. This paper uses Knox, Savage and Harvey's definitions of three generations social network analysis to analyse the caring networks of people with a terminal illness who are being cared for at home and identifies changes in these caring networks that occurred over the period of caring. Participatory network mapping of initial and current networks was used in nine focus groups. The analysis used key concepts from social network analysis (size, density, transitivity, betweenness and local clustering) together with qualitative analyses of the group's reflections on the maps. The results showed an increase in the size of the networks and that ties between the original members of the network strengthened. The qualitative data revealed the importance between core and peripheral network members and the diverse contributions of the network members. The research supports the value of third generation social network analysis and the potential for end-of-life caring to build social capital. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  10. Childhood disability in Turkana, Kenya: Understanding how carers cope in a complex humanitarian setting.

    PubMed

    Zuurmond, Maria; Nyapera, Velma; Mwenda, Victoria; Kisia, James; Rono, Hilary; Palmer, Jennifer

    2016-01-01

    Although the consequences of disability are magnified in humanitarian contexts, research into the difficulties of caring for children with a disability in such settings has received limited attention. Based on in-depth interviews with 31 families, key informants and focus group discussions in Turkana, Kenya, this article explores the lives of families caring for children with a range of impairments (hearing, vision, physical and intellectual) in a complex humanitarian context characterised by drought, flooding, armed conflict, poverty and historical marginalisation. The challenging environmental and social conditions of Turkana magnified not only the impact of impairment on children, but also the burden of caregiving. The remoteness of Turkana, along with the paucity and fragmentation of health, rehabilitation and social services, posed major challenges and created opportunity costs for families. Disability-related stigma isolated mothers of children with disabilities, especially, increasing their burden of care and further limiting their access to services and humanitarian programmes. In a context where social systems are already stressed, the combination of these factors compounded the vulnerabilities faced by children with disabilities and their families. The needs of children with disabilities and their carers in Turkana are not being met by either community social support systems or humanitarian aid programmes. There is an urgent need to mainstream disability into Turkana services and programmes.

  11. Cultural safety, diversity and the servicer user and carer movement in mental health research.

    PubMed

    Cox, Leonie G; Simpson, Alan

    2015-12-01

    This study will be of interest to anyone concerned with a critical appraisal of mental health service users' and carers' participation in research collaboration and with the potential of the postcolonial paradigm of cultural safety to contribute to the service user research (SUR) movement. The history and nature of the mental health field and its relationship to colonial processes provokes a consideration of whether cultural safety could focus attention on diversity, power imbalance, cultural dominance and structural inequality, identified as barriers and tensions in SUR. We consider these issues in the context of state-driven approaches towards SUR in planning and evaluation and the concurrent rise of the SUR movement in the UK and Australia, societies with an intimate involvement in processes of colonisation. We consider the principles and motivations underlying cultural safety and SUR in the context of the policy agenda informing SUR. We conclude that while both cultural safety and SUR are underpinned by social constructionism constituting similarities in principles and intent, cultural safety has additional dimensions. Hence, we call on researchers to use the explicitly political and self-reflective process of cultural safety to think about and address issues of diversity, power and social justice in research collaboration.

  12. Feasibility of brief psychological distress screening by a community-based telephone helpline for cancer patients