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Sample records for carers pcq-c reliability

  1. The Prostate Care Questionnaire for Carers (PCQ-C): reliability, validity and acceptability

    PubMed Central

    2009-01-01

    Background Patient experience is commonly monitored in evaluating and improving health care, but the experience of carers (partners/relatives/friends) is rarely monitored even though the role of carers can often be substantial. For carers to fulfil their role it is necessary to address their needs. This paper describes an evaluation of the reliability, validity and acceptability of the PCQ-C, a newly developed instrument designed to measure the experiences of carers of men with prostate cancer. Methods The reliability, acceptability and validity of the PCQ-C were tested through a postal survey and interviews with carers. The PCQ-C was posted to 1087 prostate cancer patients and patients were asked to pass the questionnaire on to their carer. Non-responders received one reminder. To assess test-retest reliability, 210 carers who had responded to the questionnaire were resent it a second time three weeks later. A subsample of nine carers from patients attending one hospital took part in qualitative interviews to assess validity and acceptability of the PCQ-C. Acceptability to service providers was evaluated based on four hospitals' experiences of running a survey using the PCQ-C. Results Questionnaires were returned by 514 carers (47.3%), and the majority of questions showed less than 10% missing data. Across the sections of the questionnaire internal consistency was high (Cronbach's alpha ranging from 0.80 to 0.89), and test-retest stability showed moderate to high stability (intraclass correlation coefficients ranging from 0.52 to 0.83). Interviews of carers indicated that the PCQ-C was valid and acceptable. Feedback from hospitals indicated that they found the questionnaire useful, and highlighted important considerations for its future use as part of quality improvement initiatives. Conclusions The PCQ-C has been found to be acceptable to carers and service providers having been used successfully in hospitals in England. It is ready for use to measure the aspects

  2. [Alzheimer's disease, supporting carers].

    PubMed

    Lottin, Arlette; Botter, René

    2016-03-01

    The association France Alzheimer provides carers with resources. It runs training programmes and organises "Memory Cafes". These initiatives give carers the opportunity to talk about their daily struggles, close to home, and to obtain advice on how to better manage their situation. PMID:26975685

  3. QALYs and carers.

    PubMed

    Al-Janabi, Hareth; Flynn, Terry N; Coast, Joanna

    2011-12-01

    When going 'beyond the patient', to measure QALYs for unpaid carers, a number of additional methodological considerations and value judgements must be made. While there is no theoretical reason to restrict the measurement of QALYs to patients, decisions have to be made about which carers to consider, what instruments to use and how to aggregate and present QALYs for carers and patients. Current, albeit limited, practice in measuring QALY gains to carers in economic evaluation varies, suggesting that there may be inconsistency in judgements about whether interventions are deemed cost effective. While conventional health-related quality-of-life tools can, in theory, be used to estimate QALYs, there are both theoretical and empirical concerns over the suitability of their use with carers. Measures that take a broader view of health or well-being may be more appropriate. Incorporating QALYs of carers in economic evaluations may have important distributional consequences and, therefore, greater normative discussion over the appropriateness of incorporating these impacts is required. In the longer term, more flexible forms of cost-per-QALY analysis may be required to take account of the broader impacts on carers and the weight these impacts should receive in decision making. PMID:22077576

  4. Development of the Motor Neuron Disease Carer Questionnaire.

    PubMed

    Mockford, Carole; Jenkinson, Crispin; Fitzpatrick, Raymond

    2009-01-01

    Our objective was to develop a validated questionnaire that can measure the extent to which dimensions of caring affect the health of carers of patients with motor neuron disease. An initial 190-item questionnaire was developed from in-depth interviews, focus groups and two pilot studies with carers. Factor analysis was applied to the data obtained from a large survey in the UK that identified the underlying dimensions of caring. The newly formed scales were tested for reliability using Cronbach's alpha, and for construct validity. The SF36-v2 was the benchmark instrument on which correlations were made to ascertain the relationship with carers' health. A 34-item instrument was developed which has demonstrated promising evidence of internal reliability and validity for six scales: emotional well-being, physical well-being, self care, disturbed sleep, carers' support needs and statutory services. High correlations were found with the Mental Component Score summary scale of the SF-36v2 (0.40-0.66). The development and testing of the MNDCQ indicates that as the carers' score on the MNDCQ increases, suggesting a higher level of burden, they are more likely to report poor health. Further longitudinal studies are needed to further test the instruments' ability to detect change over time. PMID:19922141

  5. Caring for carers: how community nurses can support carers of people with cancer.

    PubMed

    Argyle, Charlotte

    2016-04-01

    There are more than 1 million people in the UK looking after a family member or friend with cancer, but half the number of these carers do not receive support to care. Providing this care significantly affects cancer carers emotionally, physically, and financially. Community and district nurses have a vital role to play in reaching out to these hidden carers and signposting them to the correct support. This article provides tips on identifying carers, including who they are, the challenges they face, and how health professionals can approach and speak to them. It also provides guidance on signposting carers to national and local sources of support in the UK. PMID:27282503

  6. 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. PMID:27332409

  7. 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…

  8. 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. PMID:26876094

  9. [The French carers' association, daily support].

    PubMed

    Leduc, Florence

    2016-03-01

    Structuring the help for carers ensures they can be offered adapted support. A policy plan involving all the organisations who provide this type of assistance has resulted in the creation of get-togethers called "Les Cafés des Aidants" ("Carers' Cafés"), where people caring for a family member with any type of disability can talk and share their experience. PMID:26975684

  10. Capturing the carer's experience: a researcher's reflections.

    PubMed

    Whittingham, Katharine; Barnes, Sarah; Dawson, Jeremy

    2016-05-01

    Aim To reflect on the methodological challenges of conducting a study exploring the effects on quality of life of being an informal carer for a person with palliative heart failure, as well as the factors that influence a carer's perception of caring. Background There are multi-faceted influences on the positive and negative effects of being a carer for a patient with palliative heart failure. By conducting a mixed methods study the aim was to examine and explore similarities and differences of the phenomenon of being a carer. Data sources Quantitative data obtained from the Family Quality of Life Questionnaire (FAMQOL), and qualitative data obtained from 14 interviews with informal carers of patients living with palliative heart failure. Review methods The study was conducted as part of a PhD, University of Sheffield, and the supervisory team reviewed the research process throughout the study. Discussion The study had a two-phase sequential mixed methods design. A sample of carers was recruited from heart failure nurse service caseloads in a UK urban setting. Carers were invited to complete the Family Quality of Life Questionnaire, a tool developed for carers of patients with heart failure. Participants were also asked to provide contact details if they were willing to be interviewed for the second phase of the study. Conclusion The study highlights important methodological considerations for recruiting carers. As the intention was to begin the analysis of the questionnaires before beginning the second phase of the study, the researcher was compelled to consider how integration was maintained and how to improve access to carers for research. Implications for practice The complexities associated with the population in this study led the researcher to use a pragmatic design to address research questions. When reflecting on the research and the challenges associated with recruiting to the quantitative phase of the study, the researcher used an iterative approach to

  11. Hidden caring, hidden carers? Exploring the experience of carers for people with long-term conditions.

    PubMed

    Knowles, Sarah; Combs, Ryan; Kirk, Sue; Griffiths, May; Patel, Neesha; Sanders, Caroline

    2016-03-01

    Informal carers make a significant contribution to illness management in communities, but many struggle to access support and remain 'hidden carers'. We aimed to explore how carers of people with common long-term conditions (LTCs, such as coronary heart disease or kidney disease) conceptualised their caring, and whether they struggled to identify themselves with the term 'carer' or access for support. We conducted semi-structured interviews with 19 informal carers of people with LTCs recruited from local support groups. Topic guides were designed to encourage participants to provide their retrospective accounts of identifying as a carer or struggling to do so. Data were analysed using the constant comparative method. The study was designed collaboratively with a patient and public involvement (PPI) partner, and we consulted with a PPI steering group of people with lived experience of caring during the study. Results showed how participants drew on comparisons with those caring for more dependent relatives in explaining their reluctance to define themselves as a carer, and resisted adopting the label due to concerns that it would threaten the identity of the cared-for person. The data were interpreted in terms of types of 'work' undertaken to manage LTCs, and revealed that carers of patients with LTCs appear to primarily engage in biographical and emotional support, which may be more difficult to conceptualise as legitimate caring 'work'. Participants indicated that health professionals may be in a unique position to validate their role as carers and encourage support seeking. The study suggests how the greater focus on self-management of LTCs in the community must be complemented by recognition of this group as potentially 'hidden carers', who support the patient to minimise the impact the illness has on their lives and consequently may minimise their own caring role, with negative implications for support seeking. PMID:25706665

  12. 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

  13. 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. PMID:25991237

  14. Incorporating carers' rights in mental health legislation.

    PubMed

    Venkataraman, Prasanna; McSherry, Bernadette

    2010-02-01

    Mental health laws have traditionally been based on notions of individual rather than collective human rights. This column analyses some of the issues raised by the introduction of legislative provisions promoting the rights of carers. The new Scottish system of "named persons" is outlined, as well as other recent provisions enabling access to information and more involvement in decision-making processes. PMID:20329451

  15. 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

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

    PubMed

    Bee, Penny; Gibbons, Chris; Callaghan, Patrick; Fraser, Claire; Lovell, Karina

    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

  17. 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'…

  18. Health beliefs and carer burden in first episode psychosis

    PubMed Central

    2014-01-01

    Background Carer burden is high during First Episode Psychosis (FEP) and evidence suggests that this is a predictor of poor long-term outcome. However our understanding of factors associated with higher burden is poor. We propose that carers’ cultural backgrounds and health belief models will influence their perceived burden of care, over and above that explained by severity of illness. Methods Patients with FEP and their primary Carers were recruited from the Early Intervention Service. Patients and Carers completed a range of validated measures, self-report ethnicity and demographic information together with the Multidimensional Health Locus of Control and Caregiver Burden Inventory. Results Significant correlations were found between carer burden and health beliefs, which differed by ethnicity and gender. High physical burden was experienced by Black carers with an external locus of control; time restrictions and emotional burden correlated with an external locus of control in Asian carers. For White carers, external locus of control correlated with time dependence burden. In all ethnic groups female carers experienced more time dependency, physical and developmental burden. No significant correlations were found between patient measures of severity or duration of illness and carer burden. Conclusions The type of burden experienced by carers differed between gender and ethnicity and was related to their health belief models. Thus the explanation and understanding of illness appears to be more salient than simply a patient’s severity of illness when considering the development of carer burden. Interventions to tackle high carer burden, and thus expressed emotion to improve outcome in patients, may need increasing focus here. PMID:24913656

  19. Perceived Stress in Young Carers: Development of a Measure

    ERIC Educational Resources Information Center

    Early, Louise; Cushway, Delia; Cassidy, Tony

    2006-01-01

    We report the development of a 5-factor, 31-item, "Young Carers Perceived Stress Scale" (YCPSS) from an initial 50-item pool. The scale was developed and tested on 108 young carers aged between 12-18 years, and acceptable Cronbach Alpha values were obtained for the individual factors and the overall scale. In addition, both the overall scale and…

  20. Carer involvement with drug services: a qualitative study

    PubMed Central

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

    2013-01-01

    BackgroundEmpirical 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. ObjectiveTo explore the purpose and scope of carer involvement with adult drug services in North-east Scotland. Design, Setting and ParticipantsA 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. FindingsThree 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. ConclusionEncouraging 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. PMID:23216899

  1. 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

  2. A dementia first aid course for family carers.

    PubMed

    Pogson, Richard

    Many people with dementia are cared for by family members, who may receive little advice or support. This article describes a course developed to help carers deal with frustrating and challenging behaviour. PMID:26647481

  3. [Supporting carers of persons suffering from an eating disorder].

    PubMed

    Zitarosa, Dino; de Zwaan, Martina; Pfeffer, Meike; Graap, Holmer

    2012-01-01

    The purpose of this article is to describe the background and procedure of a skills training program provided for carers of patients suffering from anorexia or bulimia nervosa. Caring for someone suffering from an eating disorder is associated with psychological distress and may lead to unhelpful interactive behaviours that maintain the illness. Recent investigations in supporting carers, especially skills sharing workshops that target interpersonal maintaining factors are described. A 5-session training concept in teaching basic skills and information about eating disorders to carers in order to improve caregiving burden and reduce interpersonal maintaining factors like expressed emotions (EE) is currently examined in our department. Design and content will be described in detail. Carers' and sufferers' perceptions of the impact of the sessions and acceptance of the provided skills training are reported. PMID:22814922

  4. Transcultural nursing strategies for carers of people with dementia.

    PubMed

    Bunting, Melissa; Jenkins, Catharine

    2016-04-01

    Caring for a family member with dementia is stressful, and carers from all backgrounds often feel overwhelmed and under-supported. Professional and family carers' perceptions of the challenges and satisfactions of caring are influenced by culturally derived expectations. However, experiences of caring often differ from stereotypical norms. Experiences of carer stress and beliefs about the nature and extent of support that can be expected from social networks and statutory services may differ between cultural groups in the UK, but sensitive advice, information, and emotional and practical support are universally required. Transcultural comparisons reveal similarities between carers' needs and enable identification of values-based culturally congruent recommendations that nurses can use to promote black and Asian minority ethnic carers' confidence and wellbeing. This article, based on practice experience and a literature review, explores the effect of caring among different cultural groups and offers recommendations for culturally congruent interventions to support carers. It provides evidence-based guidance to enable nurses to meet their responsibilities for transcultural working, as laid out in the Care Act 2014. A scenario illustrates recommendations for practice. PMID:27029989

  5. 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. PMID:24784941

  6. Supporting carers: a learning resource for community nurses.

    PubMed

    Maskell, Pip; Somerville, Mary; Mathews, Alex

    2015-07-01

    In 2013, as part of the Queen's Nursing Institute (QNI) Carers Project, the QNI asked the 4M Learning Network to test the need for a learning resource to enable community nurses to support carers' health and wellbeing needs. In order to measure the learning needs of community nurses, the QNI undertook a literature review (Laing and Sprung, 2013). The 4M team commenced with desk research and extensive consultation using an online survey and workshops across England. The outcomes of this consultation informed the development of an open-access online learning resource for community nurses, with modules covering different aspects of the nurses' role in relation to carers, as well as a comprehensive resource directory and e-workbook. This resource was launched in March 2014. In response to the enthusiasm and positive feedback from the community nurses, two learning resources were launched in March 2015 for practice nurses and school nurses. An accompanying resource directory mobile application is currently being development and is due to be released in summer 2015. It should be noted that throughout the article, the term carers refers to informal carers, i.e. family or friends caring for a person at home; it does not refer to an employed care assistant or helper. PMID:26140318

  7. "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…

  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. 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…

  11. Experiences of family carers of people diagnosed with borderline personality disorder.

    PubMed

    Lawn, S; McMahon, J

    2015-05-01

    There is limited understanding of the experience of family carers of people diagnosed with borderline personality disorder (BPD). This study aimed to explore their experiences of being carers, their attempts to seek help for the person diagnosed with BPD and their own carer needs. An invitation to participate in an online survey was distributed to carers across multiple consumer and carer organizations and mental health services, by the Private Mental Health Consumer Carer Network (Australia) in 2011. Responses from 121 carers showed that they experience significant challenges and discrimination when attempting to engage with and seek support from health services. Comparison with consumers' experiences (reported elsewhere) showed that these carers have a clear understanding of the discrimination faced by people with this diagnosis, largely because they also experience exclusion and discrimination. Community carer support services were perceived as inadequate. General practitioners were an important source of support; however, they and other service providers need more education and training to support attitudinal change to address discrimination, recognize carers' needs and provide more effective support. This study provides the first detailed account of BPD carers' experiences across a broad range of support needs and interactions with community support and health services. PMID:25857849

  12. Barriers and facilitators for male carers in accessing formal and informal support: A systematic review.

    PubMed

    Greenwood, Nan; Smith, Raymond

    2015-10-01

    Unpaid, informal carers play a vital role in supporting people with long-term conditions. Being a carer can be challenging and carers may need support but they frequently fail to access it. Compared to research investigating the experiences of female carers, research with male carers is underdeveloped. The available evidence suggests male and female carers have many experiences in common but some research suggests that compared to females, male carers are even less likely to access services. The aim of this systematic review was therefore to synthesise research investigating adult male carers' experiences of accessing formal and informal support focussing on the barriers and facilitators. Nine health and social care electronic databases were searched (e.g. PubMed, PsychINFO, CINAHL Plus, Social Policy and Practice, Scopus). Seven studies (five qualitative and two quantitative) fitting the inclusion criteria were identified. All came from North America and most focussed on older carers caring for people with dementia. All seven studies described barriers to accessing support and three highlighted facilitators. Male carers felt committed to their role, seeing it as their responsibility but were often ambivalent about seeking help. Insufficient service information was frequently emphasised. Participants highlighted positive past experiences and professional or voluntary sector support in providing information and helping access services. Research into male carers' experiences in accessing support remains underdeveloped. Research that distinguishes between, for example, the experiences of spouses and sons and with direct comparisons between male and female carers is needed. Whether gender specific services would benefit male carers remains undetermined. PMID:26271710

  13. 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…

  14. CARER: Efficient Dynamic Sensing for Continuous Activity Monitoring

    PubMed Central

    Au, Lawrence K.; Bui, Alex A.T.; Batalin, Maxim A.; Xu, Xiaoyu; Kaiser, William J.

    2016-01-01

    Advancement in wireless health sensor systems has triggered rapidly expanding research in continuous activity monitoring for chronic disease management or promotion and assessment of physical rehabilitation. Wireless motion sensing is increasingly important in treatments where remote collection of sensor measurements can provide an in-field objective evaluation of physical activity patterns. The well-known challenge of limited operating lifetime of energy-constrained wireless health sensor systems continues to present a primary limitation for these applications. This paper introduces CARER, a software system that supports a novel algorithm that exploits knowledge of context and dynamically schedules sensor measurement episodes within an energy consumption budget while ensuring classification accuracy. The sensor selection algorithm in the CARER system is based on Partially Observable Markov Decision Process (POMDP). The parameters for the POMDP algorithm can be obtained through standard maximum likelihood estimation. Sensor data are also collected from multiple locations of the subjects body, providing estimation of an individual's daily activity patterns. PMID:22254783

  15. The impact of lung cancer on patients and carers.

    PubMed

    Ellis, Jackie

    2012-02-01

    This article aims to provide a brief review of the literature with regard to the impact of lung cancer on patients and their informal carers. Compared to other types of cancer, the distress associated with lung cancer has been found to be the most intense. Rather than focusing on symptoms in isolation recent emphasis regarding the symptom experience has been on symptoms clusters, as understanding these clusters may improve the management of ongoing and unrelieved symptoms. However, the disparities in methodology are significant barriers to producing comparable results, although recent efforts have been made to address these. Whilst research into symptoms has enormous potential for the management of symptom clusters, it needs to move away from the essentially reductionist stance which currently dominates and broaden its scope to one that acknowledges the complexity of the experience of symptom clusters from the perspective of the patient and their informal carer. Poor management of symptoms complicates patient care and potentially contributes to the heavy burden which often falls on family caregivers, especially as the disease progresses. The majority of studies focus on the experiences of primary care providers, most often the partner/spouse. Such studies have shown that spouses of patients with lung cancer exhibit significant distress and lower levels of quality of life than the general population. Research also indicates that significant others go through a transition process due to changes brought about by the diagnosis of lung cancer and struggle to endure and overcome difficulties and distress. Significant others were seen to suffer during this process of transition and experienced altered relationships. Clinicians working with patients suffering from lung cancer and their carers should intervene to enhance their quality of life from diagnosis, during the disease trajectory and during bereavement. Interventions need to be developed to support both patients and

  16. 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. PMID:26781554

  17. Partnership nursing: influences on involvement of informal carers.

    PubMed

    Casey, A

    1995-12-01

    Factors influencing family involvement in the care of children in hospital were explored in a survey of 243 inpatients in two hospitals. Eighty-five per cent of the children were receiving some or all of their care from a family member, usually the mother. Significant influences on the amount and type of involvement included acuity, type of illness, length of stay and the language spoken by the family. Other social factors, such as distance from the hospital, number of dependent siblings, social class and ethnicity were not significant influencing factors in this population. The influence of language on involvement, and conclusions from related literature, suggest that characteristics of the interaction such as communication and nursing style are more significant than social structural factors. A typology of nursing approaches to informal carers is proposed which could apply beyond the paediatric context. Further work is needed to test the hypothesis that such approaches are characterized by nurses excluding the carer, or permitting, making assumptions about, or negotiating carer involvement. PMID:8675858

  18. Befriending carers of people with dementia: randomised controlled trial

    PubMed Central

    2008-01-01

    Objective To evaluate the effectiveness of a voluntary sector based befriending scheme in improving psychological wellbeing and quality of life for family carers of people with dementia. Design Single blind randomised controlled trial. Setting Community settings in East Anglia and London. Participants 236 family carers of people with primary progressive dementia. Intervention Contact with a befriender facilitator and offer of match with a trained lay volunteer befriender compared with no befriender facilitator contact; all participants continued to receive “usual care.” Main outcome measures Carers’ mood (hospital anxiety and depression scale—depression) and health related quality of life (EuroQoL) at 15 months post-randomisation. Results The intention to treat analysis showed no benefit for the intervention “access to a befriender facilitator” on the primary outcome measure or on any of the secondary outcome measures. Conclusions In common with many carers’ services, befriending schemes are not taken up by all carers, and providing access to a befriending scheme is not effective in improving wellbeing. Trial registration Current Controlled Trials ISRCTN08130075. PMID:18505757

  19. Foster carers influence brood pathogen resistance in ants.

    PubMed

    Purcell, Jessica; Chapuisat, Michel

    2014-10-01

    Social organisms face a high risk of epidemics, and respond to this threat by combining efficient individual and collective defences against pathogens. An intriguing and little studied feature of social animals is that individual pathogen resistance may depend not only on genetic or maternal factors, but also on the social environment during development. Here, we used a cross-fostering experiment to investigate whether the pathogen resistance of individual ant workers was shaped by their own colony of origin or by the colony of origin of their carers. The origin of care-giving workers significantly influenced the ability of newly eclosed cross-fostered Formica selysi workers to resist the fungal entomopathogen Beauveria bassiana. In particular, carers that were more resistant to the fungal entomopathogen reared more resistant workers. This effect occurred in the absence of post-infection social interactions, such as trophallaxis and allogrooming. The colony of origin of eggs significantly influenced the survival of the resulting individuals in both control and pathogen treatments. There was no significant effect of the social organization (i.e. whether colonies contain a single or multiple queens) of the colony of origin of either carers or eggs. Our experiment reveals that social interactions during development play a central role in moulding the resistance of emerging workers. PMID:25143036

  20. Paid carers' experiences of caring for mechanically ventilated children at home: implications for services and training.

    PubMed

    Maddox, Christina; Pontin, David

    2013-06-01

    UK survival rates for long-term mechanically ventilated children have increased and paid carers are trained to care for them at home, however there is limited literature on carers' training needs and experience of sharing care. Using a qualitative abductive design, we purposively sampled experienced carers to generate data via diaries, semi-structured interviews, and researcher reflexive notes. Research ethics approval was granted from NHS and University committees. Five analytical themes emerged - Parent as expert; Role definition tensions; Training and Continuing Learning Needs; Mixed Emotions; Support Mechanisms highlighting the challenges of working in family homes for carers and their associated learning needs. Further work on preparing carers to share feelings with parents, using burnout prevention techniques, and building confidence is suggested. Carers highlight the lack of clinical supervision during their night-working hours. One solution may be to provide access to registered nurse support when working out-of-office hours. PMID:23711491

  1. 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. PMID:25039344

  2. 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. PMID:24844768

  3. Impact of patient confidentiality on carers of people who have a mental disorder.

    PubMed

    Wynaden, Dianne; Orb, Angelica

    2005-09-01

    This paper discusses how patient confidentiality issues impact on carers of people with mental disorders. Data obtained from interviews with 27 primary carers were analysed using the grounded theory method. Despite the emphasis that Australian mental health policy documents place on collaboration with carers, the findings of this Western Australian study showed that carers were expected to undertake the caring role with little support, education or understanding. The lack of collaboration with health professionals increased carers' level of distress and left them feeling frustrated and resentful. Carers have identified that patient confidentiality was one reason why health professionals were unwilling to collaborate with them. To ensure carers' continued commitment to caring, negotiation about patient confidentiality issues must occur at the onset of the caregiving process. Carers have the right to certain information in order to maintain their level of well-being and their personal safety. Moreover, in certain circumstances, patient confidentiality may need to be breached if the life of the ill family member or others is in danger. A greater carer involvement in and understanding of the ill family member's illness will facilitate better treatment outcomes in the community for the ill family member. PMID:16181153

  4. Disseminating skills to carers of people with eating disorders: an examination of treatment fidelity in lay and professional carer coaches

    PubMed Central

    Macdonald, Pamela; Hibbs, Rebecca; Rhind, Charlotte; Harrison, Amy; Goddard, Elizabeth; Raenker, Simone; Todd, Gill; Treasure, Janet

    2014-01-01

    Family members of people with eating disorders (EDs) have high levels of stress and can use maladaptive methods of coping. We have developed an intervention, using motivational interviewing (MI) strategies that trains lay and professional carer coaches (CCs) to support carers of adolescents with EDs to use more adaptive coping procedures. The aim of this study is to measure treatment integrity in coaches with either academic or lived experience. Eleven coaches were trained and supervised by an expert trainer and an ‘expert by experience’ trainer. Six of the coaches had prior training in clinical work and/or psychology and five had personal experience of supporting a loved one with an ED. Two audio-taped sessions (Sessions 3 and 7) from each family coached (n = 22) were assessed for fidelity to MI. Half the sessions (50% n = 11) had a Motivational Interviewing Treatment Integrity global score above the suggested cut-off for recommended competency. Prior clinical training was related to higher treatment fidelity and experiential training (having coached a greater number of families) improved treatment fidelity in the lay carer group. These preliminary findings suggest that: “lay CCs” can be trained to deliver an intervention based on MI. Further exploration of a more effective means of training, monitoring and supervision is required to maximise the quality of the intervention. PMID:25750802

  5. 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

  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. 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…

  8. 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…

  9. 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…

  10. 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…

  11. Adults with Intellectual Disabilities and Their Carers as Researchers and Participants in a RCT

    ERIC Educational Resources Information Center

    Turk, Vicky; Leer, Geoffrey; Burchell, Sarah; Khattram, Sukhjinder; Corney, Roslyn; Rowlands, Gill

    2012-01-01

    Background: This article describes the process of including people with intellectual disabilities (ID) and carers of people with ID as researchers and participants in randomised controlled trial (RCT) research. People with ID are rarely involved in research about their health, either as researchers or participants. Carers are often included as…

  12. 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…

  13. 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…

  14. Bounded Agency in Young Carers' Lifecourse-Stage Domains and Transitions

    ERIC Educational Resources Information Center

    Hamilton, Myra Giselle; Adamson, Elizabeth

    2013-01-01

    This paper presents the findings from a project investigating the circumstances, experiences, perspectives and service needs of young people caring for a family member with a disability or long-term illness. Using qualitative methods, our research explored the experiences of two cohorts of young carers--younger carers aged 7 to 17 years and young…

  15. 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…

  16. 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"…

  17. Development of guidelines to facilitate improved support of South Asian carers by primary health care teams

    PubMed Central

    Katbamna, S; Baker, R; Ahmad, W; Bhakta, P; Parker, G

    2001-01-01

    Background—Evidence based guidelines are regarded as an appropriate basis for providing effective health care, but few guidelines incorporate the views of users such as carers. Aim—To develop guidelines to assist primary health care teams (PHCTs) in their work with carers within South Asian communities. Methods—The guidelines were drawn up by a development group consisting of members of teams in areas with South Asian communities (Leicester and Bradford). The teams were invited to make their recommendations based on a systematic review of literature on minority ethnic carers and the findings of a study of the needs and experiences of local South Asian carers. A grading system was devised to enable the teams and a group of expert peer reviewers to assess the quality of evidence in support of each recommendation. Results—The teams agreed seven recommendations, graded according to available evidence and strength of opinion. External peer review supported the PHCTs' interpretation of evidence and their recommendations. The recommendations included consideration of communication and information for carers, coordination of care within teams, and recognition by team members of the roles of carers and their cultural and religious beliefs. Conclusion—There are particular steps that PHCTs can take to improve their support of South Asian carers. It is possible to develop guidelines that take users' views into account and incorporate evidence from qualitative studies. Key Words: primary health care; South Asian carers; guidelines PMID:11533424

  18. 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…

  19. 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. PMID:26636891

  20. 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. PMID:21393292

  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. Caring for elderly dependents: effects on the carers' quality of life.

    PubMed

    Jones, D A; Peters, T J

    1992-11-01

    This study describes a survey of 256 informal carers and elderly people they support, and examines the impact of the caring role upon quality of life. Carers reported that many aspects of their physical and mental health as well as their social and family lives were affected by their caring. For many the caring activity was unremitting. Overall, daughters were the most likely to report deleterious effects on their lives. Dominant factors associated with stress were the relationship between carer and dependent, sex of the carer and effects on social and family life. While relationship and sex were also associated with anxiety, loneliness was the dominant factor associated with anxiety and depression. Older age of the dependent was associated with stress, carer's disability was associated with anxiety, and depression in the elderly person was associated with depression in carers. These findings indicate that community services and future policies should be oriented towards the needs of carers and their families and not solely to the needs of frail elderly people. In particular there is a need to consider an increase in the provision of flexible planned respite care. PMID:1471580

  3. Current perceptions of respite care: experiences of family and informal carers of people with a learning disability.

    PubMed

    Mansell, Ian; Wilson, Christine

    2009-12-01

    Access to regular, high-quality respite care has a beneficial impact on a carer's ability to fulfil their caring role, but provision varies widely. The current study aims to report family and informal carers' perceptions of respite care services offered to them by their local authority. A mixed method, triangulated design, yielded both quantitative and qualitative data. Members of a parent/carer federation were sent a questionnaire which included a section on 'respite care'; 151 of 647 responded. Two focus groups were held with 15 carers who had previously completed the questionnaire. The majority of carers reported that their respite needs were not being met. Unmet needs were hampered by the lack of information regarding criteria for access to respite. Discrepancies were evident between professionals and carers on a shared definition of respite care. Carers were unsure of exactly which activities constituted respite care and for whom the service was being provided. PMID:20048347

  4. "It's us that have to deal with it seven days a week": carers and borderline personality disorder.

    PubMed

    Dunne, Emma; Rogers, Bertha

    2013-12-01

    Carers provide unpaid support to family or friends with physical or mental health problems. This support may be within the domain of activities of daily living, such as personal care, or providing additional emotional support. While research has explored the carer experience within the National Health Service in the United Kingdom, it has not focused specifically on carers of individuals with a diagnosis of borderline personality disorder (BPD). Eight carers for those with a diagnosis of BPD were invited to take part in two focus groups. The first carers' focus group, entitled 'The role of Mental Health services,' produced four super-ordinate themes. The second carers' focus, entitled 'Experiences in the Community,' produced six super-ordinate themes. It seems carers of those with a diagnosis of BPD are continuing to be overlooked by mental health services, and subsequently require more support to ensure their own well-being. PMID:23054157

  5. Assisting people with dementia with their medicines: experiences of family carers

    PubMed Central

    Smith, Felicity; Grijseels, Madelon S; Ryan, Patricia; Tobiansky, Robert

    2015-01-01

    Objectives Many family carers provide assistance with medicines that is vital for optimal clinical outcomes. Medicines-related tasks are known to contribute to carer burden and stress. This study examined the experiences of family carers when providing medicines-related assistance for a person with dementia, to indicate how services could become more responsive to the specific needs of this group of carers. Methods Semi-structured interviews were undertaken with family carers and care-recipients identified though a memory clinic in north London and a local Alzheimer's Society. The interview guide, comprising open questions, was informed by previous studies and consultation with stakeholders. Qualitative procedures involving a framework approach were employed in the analysis. Key findings Fourteen interviews with carers and five with care-recipients were conducted. These highlighted the burden and challenges, surrounding medicines-management activities. As well as practical aspects that could be complex, carers were commonly making judgements about the need for and appropriateness of medicines. Although experiences were varied, carers reported difficulties in maintaining supplies, ensuring adherence to regimens and accessing health professionals; and they made some recommendations for service improvements. Carers’ difficulty in obtaining information and advice about medicines was compounded by their desire to allow the care-recipient to retain autonomy over their medicines as long as possible. Conclusion This study highlights the distinct needs and problems with regard to medicines-management when caring for a person with dementia. As the prevalence of dementia rises, interventions designed to address these specific aspects of reduce carer-burden should be a priority for health professionals. PMID:25351043

  6. Valued aspects of primary palliative care: content analysis of bereaved carers' descriptions

    PubMed Central

    Grande, Gunn E; Farquhar, Morag C; Barclay, Stephen IG; Todd, Chris J

    2004-01-01

    Background: Informal carers provide the bulk of palliative home care. They largely rely on general practitioners (GPs) and district nurses to support them in this role, yet little is known about what carers themselves consider important in this support. Aim: To identify what informal carers valued in the palliative support provided by GPs and district nurses by using carers' own descriptions of such support. Design of study: Retrospective interviews. Setting: Primary care in Cambridgeshire. Method: Semi-structured interviews with bereaved carers of 48 patients with cancer and 12 patients with non-cancer diagnoses. Content analysis of carers' evaluative descriptions of GP and district nurse support. Results: The accessibility of the GP and district nurse emerged as the most important aspect of support. Enlistment of help from other agencies was also extensively mentioned, together with provision of equipment. Attitude or approach during interactions, and relationship with the professional were important, particularly regarding GP support, whereas support for the carer, information, and symptom control were mentioned less often. Data suggested that support was not as good for older patients (≥75 years), but this finding requires further investigation. Conclusion: Results largely confirmed findings of previous, quantitative research and the importance of a patient-centred approach. What emerged most strongly, however, was the central importance of accessibility of support services for lay carers responsible for end-of-life home care. This mainly concerned GP and district nurse support, but accessibility of additional care and equipment were also important. In short, carers' main focus was the basic support that enabled them to sustain care in the home. PMID:15469677

  7. The process of learning in dementia-carer support programmes: some preliminary observations.

    PubMed

    Coates, D

    1995-01-01

    Theories of experiential learning, notably the theory of andragogy, can be used to elucidate the process of learning in dementia-carer support programmes. Such theories attach importance to the positive influence of life experience and maturity, and to the salience of personal issues, but their appropriateness needs to be critically analysed. Stress is a common manifestation among dementia carers and its presence can significantly affect openness to learning. As a result of recent policy changes and of demographic shifts, nurses are likely to be increasingly involved in carer support programmes. They need to be aware of the complex issues addressed in this paper. PMID:7897076

  8. 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. PMID:17287227

  9. Why are family carers of people with dementia dissatisfied with general hospital care? a qualitative study

    PubMed Central

    2012-01-01

    Background Families and other carers report widespread dissatisfaction with general hospital care for confused older people. Methods We undertook a qualitative interviews study of 35 family carers of 34 confused older patients to ascertain their experiences of care on geriatric and general medical, and orthopaedic wards of a large English hospital. Transcripts were analysed using a grounded theory approach. Themes identified in interviews were categorised, and used to build a model explaining dissatisfaction with care. Results The experience of hospital care was often negative. Key themes were events (illness leading to admission, experiences in the hospital, adverse occurrences including deterioration in health, or perceived poor care); expectations (which were sometimes unrealistic, usually unexplored by staff, and largely unmet from the carers’ perspective); and relationships with staff (poor communication and conflict over care). Expectations were influenced by prior experience. A cycle of discontent is proposed. Events (or ‘crises’) are associated with expectations. When these are unmet, carers become uncertain or suspicious, which leads to a period of ‘hyper vigilant monitoring’ during which carers seek out evidence of poor care, culminating in challenge, conflict with staff, or withdrawal, itself a crisis. The cycle could be completed early during the admission pathway, and multiple cycles within a single admission were seen. Conclusion People with dementia who have family carers should be considered together as a unit. Family carers are often stressed and tired, and need engaging and reassuring. They need to give and receive information about the care of the person with dementia, and offered the opportunity to participate in care whilst in hospital. Understanding the perspective of the family carer, and recognising elements of the ‘cycle of discontent’, could help ward staff anticipate carer needs, enable relationship building, to pre-empt or

  10. 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. PMID

  11. 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

  12. 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

  13. 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. PMID:23857888

  14. Coping with and factors impacting upon the experience of lung cancer in patients and primary carers.

    PubMed

    Ellis, J; Lloyd Williams, M; Wagland, R; Bailey, C; Molassiotis, A

    2013-01-01

    There is a paucity of research exploring patients' and their informal carers' experience of coping with and factors impacting on the lung cancer experience. This study aims to explore how patients and their informal carers cope with a diagnosis of lung cancer and describe the key factors that mediate distress in this population in order that they may be better supported in the future. This was a qualitative study employing semi-structured interviews and framework analysis to elicit the experience of 37 patients with lung cancer and 23 primary carers regarding their coping with and factors influencing patient/carer distress. The findings illustrate that participants used both emotional- and problem-focused coping strategies, including accepting the reality of lung cancer, adopting a positive attitude/fighting spirit, denial, avoidance and distraction and information seeking. Maintaining normality was also important. Key factors that mediate the lung cancer experience were also identified including hope, social network, prior experience of cancer and other chronic illnesses, the competing coping strategies of patients and their primary carers, the unpredictable nature of patients' behaviour, changing symptomatology, the perceived attitudes of health professionals and the impact of perceived delays in diagnosis. This study provides important insights into how patients with lung cancer and their primary carers might be better supported. PMID:22978743

  15. 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

  16. [QUALITY OF LIFE IN CARERS OF PATIENTS WITH MULTIPLE SCLEROSIS TAKING A DISEASE-MODIFYING MEDICATION: A PILOT STUDY].

    PubMed

    Gigineishvili, D; Kiziria, M; Tsiskaridze, A; Shakarishvili, R

    2016-04-01

    A chronic physical disease not only has direct consequences for the chronically ill person but can also distort the life of the healthy family member. The aim of our study was to measure the health-related quality of life (QOL) in people caring for patients with relapsing-remitting form of multiple sclerosis (MS) and currently treated with disease-modifying drugs. Eligible patients were selected via Sarajishvili Institute of Neurology database for MS. 25 carers (mean age 40.7; 56% women, 56% partners) and 25 sex and age-matched controls completed 36-item Short Form Health Survey (SF-36), version 2. Carers also completed the Beck depression Inventory (BDI-II). Compared to carers, patients were found to have a lower QOL (P<0.05 for five dimensions). However, no significant difference was observed in SF-36 domains scores between carers and controls except general health score which was lower in carers (63.3 vs 75.6, p=0.016). A strong negative correlation was found between BDI and all SF-36 dimension scores of carers. The association remains unchanged even adjusted to carers other independent variables. Last year relapse rate was the only clinical variable correlated with carers QOL dimensions. Our pilot study demonstrated that QOL in carers of patients with relapsing-remitting MS receiving disease-modifying treatment is minimally affected. Further study with large sample size is warranted. PMID:27249435

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

    PubMed Central

    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. PMID:25331912

  18. 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

  19. 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

  20. Predicting mental health outcomes in female working carers: a longitudinal analysis.

    PubMed

    Lyonette, C; Yardley, L

    2006-07-01

    This study investigated the factors contributing to psychological distress and positive affect over time in female working carers of older people. Questionnaires (including measures of work-related, care-related, interpersonal and psychological aspects of working and caring) were distributed to 275 female working carers in the UK, the majority of whom were working as nurses in the National Health Service. In cross-sectional analyses, higher work stress and work demands predicted higher psychological distress among respondents. Better carer health, lower external pressures to care and higher work satisfaction predicted greater positive affect. The combined effects of greater work stress and work demands also predicted higher levels of psychological distress at follow-up (after one year), whereas younger age and lower work stress predicted greater positive affect over time. We conclude that more stressful and demanding work roles appear detrimental to carers' mental health, while lower stress occupational roles may be beneficial, providing satisfaction and fulfilment outside of the caring role. Older female carers may be especially at risk of psychological distress, possibly due in part to increasing health problems of their own. PMID:16798629

  1. 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

  2. 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

  3. 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…

  4. Levels of Psychological Distress Experienced by Family Carers of Children and Adolescents with Intellectual Disabilities in an Urban Conurbation

    ERIC Educational Resources Information Center

    Emerson, Eric; Robertson, Janet; Wood, Justin

    2004-01-01

    Background: The aim of the present study was to identify factors associated with the level of psychological distress reported by family carers of children with intellectual disability living in a large urban conurbation. Method: Information was collected by postal questionnaire (or interview for family carers who did not have English as their…

  5. 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…

  6. 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. PMID:22081931

  7. Support for Family Carers of Children and Young People with Developmental Disabilities and Challenging Behaviour: What Stops It Being Helpful?

    ERIC Educational Resources Information Center

    Wodehouse, G.; McGill, P.

    2009-01-01

    Background: Many family carers find the support they receive in respect of their child's challenging behaviour unhelpful. This study sought to identify carer perceptions of the ways in which support is unhelpful and how it could be more helpful. Methods: Thirteen mothers, caring for a child with intellectual disability and challenging behaviour,…

  8. 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

  9. 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

  10. 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. PMID:24034954

  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. 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…

  13. The influence of carer fear and self-blame when supporting a loved one with an eating disorder.

    PubMed

    Stillar, Amanda; Strahan, Erin; Nash, Patricia; Files, Natasha; Scarborough, Jennifer; Mayman, Shari; Henderson, Katherine; Gusella, Joanne; Connors, Laura; Orr, Emily S; Marchand, Patricia; Dolhanty, Joanne; Lafrance Robinson, Adèle

    2016-01-01

    Carers often feel disempowered and engage in behaviours that inadvertently enable their loved one's ED symptoms and yet little is known regarding these processes. This study examined the relationships among fear, self-blame, self-efficacy, and accommodating and enabling behaviours in 137 carers of adolescents and adults with ED. The results revealed that fear and self-blame predicted low carer self-efficacy in supporting their loved one's recovery as well as the extent to which carers reported engaging in recovery-interfering behaviours. The relevance of these findings are discussed in the context of family-oriented ED therapies and highlight the importance for clinicians to attend to and help to process strong emotions in carers, in order to improve their supportive efforts and, ultimately, ED outcomes. PMID:26766773

  14. 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

  15. 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. PMID:26118356

  16. 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. PMID:25286771

  17. 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…

  18. Carers' Responses to Challenging Behaviour: A Comparison of Responses to Named and Unnamed Vignettes

    ERIC Educational Resources Information Center

    Dagnan, Dave

    2012-01-01

    Background: The evidence supporting the application of Weiner's motivational model of helping to the behaviour of carers' of people with intellectual disabilities and challenging behaviour is inconsistent. One suggested reason for this is that many studies use stimuli that might generate different responses from those to actual instances of…

  19. '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. PMID:25319872

  20. Carer Reports of the Efficacy of Cognitive Behavioral Interventions for Anger

    ERIC Educational Resources Information Center

    Rose, John

    2010-01-01

    Anger resulting in Aggression can be a significant problem for some people with Intellectual Disabilities. Carers were asked to complete a provocation inventory and an attribution scale before and after a group cognitive behavioral intervention aimed for anger and at similar points in time for a waiting list control. When compared using an…

  1. 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. PMID:24293469

  2. 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…

  3. 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 of…

  4. 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…

  5. 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…

  6. 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…

  7. Listening to carers talking about the subjects of continence and toileting.

    PubMed

    Forbat, Liz

    Toilets and continence play critical roles in the lives of people who care for a relative at home. Issues around toileting are central to the relationship between the carer and the person being cared for, with the bathroom often becoming the most important place in the house. PMID:14768154

  8. 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…

  9. 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.…

  10. 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…

  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. How can we help family carers manage pain medicines for patients with advanced cancer? A systematic review of intervention studies

    PubMed Central

    Latter, Sue; Hopkinson, Jane B; Richardson, Alison; Hughes, Jane A; Lowson, Elizabeth; Edwards, Deborah

    2016-01-01

    Background Family carers play a significant role in managing pain and associated medicines for people with advanced cancer. Research indicates that carers often feel inadequately prepared for the tasks involved, which may impact on carers’ and patients’ emotional state as well as the achievement of optimal pain control. However, little is known about effective methods of supporting family carers with cancer pain medicines. Aims To systematically identify and review studies of interventions to help carers manage medicines for pain in advanced cancer. To identify implications for practice and research. Method A systematic literature search of databases (MEDLINE, CINAHL, PsycINFO and AMED) was carried out to identify studies of pain medication management interventions that involved family carers of patients with advanced cancer, and reported specific outcomes for family carers. Patient pain outcomes were also sought. Studies were quality appraised; key aspects of study design, interventions and outcomes were compared and a narrative synthesis of findings developed. Results 8 studies were included; all had significant methodological limitations. The majority reported improvements in family carer knowledge and/or self-efficacy for managing pain medicines; no effect on patient pain outcomes; and no adverse effects. It was not possible to discern any association between particular intervention characteristics and family carer outcomes. Conclusions Current evidence is limited, but overall suggests face-to-face educational interventions supported by written and/or other resources have potential to improve carers’ knowledge and self-efficacy for pain management. Further research is needed to identify how best to help family carers manage pain medicines for patients with advanced cancer. PMID:27150294

  13. 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. PMID:27297573

  14. Time to care? Health of informal older carers and time spent on health related activities: an Australian survey

    PubMed Central

    2013-01-01

    Background Little is known about the time spent on specific health related activities by older adult informal carers who assist people with chronic illness. Research has not yet addressed the association between carer health status and their care demands. Such information could inform policy and health system efforts to manage chronic illness. Methods We conducted an Australia wide survey using recall questionnaires to record time use. The study asked how much time is spent on “most days” for the most common activities like taking medication, self-treatment and testing, and how much time in the last month on less common activities like attending a physician or shopping associated with health needs. The survey was mailed to 5,000 members of National Seniors Australia; 2,500 registrants on the National Diabetes Services Scheme; and 3,100 members of the Australian Lung Foundation. A total of 2519 people responded, including 313 people who identified as informal carers. Statistical analysis was undertaken using Stata 11. Standard errors and confidence intervals were derived using bootstrapping techniques within Stata 11. Results Most carers (96.2%) had chronic illness themselves, and those with greater numbers of chronic illnesses were those who faced the greatest overall time demands. The top decile of carers devoted between 8.5 and 10 hours a day to personal and caring health related activities. Informal carers with chronic illness spent more time managing their own health than people with chronic illness who were not informal carers. These carers spent more time on caring for others than on caring for their own health. High levels of caring responsibility were associated with poorer reported carer health. Conclusions Policy and health care services will need to adapt to recognise and reduce the time burden on carers who themselves have chronic illness. More carefully targeted investment in the social infrastructure of formal care would free up carers for other

  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. 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. PMID:23245624

  17. The experience of family carers attending a joint reminiscence group with people with dementia: A thematic analysis.

    PubMed

    Melunsky, Nina; Crellin, Nadia; Dudzinski, Emma; Orrell, Martin; Wenborn, Jennifer; Poland, Fiona; Woods, Bob; Charlesworth, Georgina

    2015-11-01

    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

  18. 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. PMID:17030491

  19. Implementing the wandering evidence for older people with dementia: key issues for nurses and carers.

    PubMed

    Neville, Christine C; McMinn, Bryan; Cave, Patricia

    2006-12-01

    This paper explores and discusses key issues for nurses and carers in implementing the evidence from the recent assessment of wandering studies conducted by Algase. Wandering is one of the most burdensome of all the behavioural symptoms and is increasing as the prevalence rates of dementia rise with the aging of the population. Wandering describes a diverse pattern of behaviour from aimless walking and pacing through to elopement. Until recently, the empirical evidence in relation to wandering and its implications for caring for older people has seriously lagged behind other research. However, several studies have led to important advances in the management of wandering and despite there being in some instances methodological deficiencies and modest efficacy, nurses, carers and older people who wander will benefit from the findings. PMID:20925769

  20. Service user and carer involvement in learning and teaching: a faculty of health staff perspective.

    PubMed

    Gutteridge, Robin; Dobbins, Kerry

    2010-08-01

    As part of a larger evaluation study, 20 members of staff in a Faculty of Health were interviewed about the impact of service user and carer involvement on learning and teaching. A qualitative approach was adopted and semi-structured interviews were used to explore current levels of involvement, barriers and solutions. The data generated was analysed using the principles of grounded theory. Findings suggest respondents recognised the requirement to involve service users and carers in their learning activities. Most wanted to develop this aspect of their educational provision but a number of barriers were described. Strategic and operational solutions were proposed to overcome these and respondents were positive about achieving meaningful involvement. PMID:19959262

  1. 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. PMID:27332466

  2. 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. PMID:20675536

  3. Comparison of General Population, Patient, and Carer Utility Values for Dementia Health States

    PubMed Central

    Mulhern, Brendan; Banerjee, Sube; Tait, Rhian; Watchurst, Caroline; Smith, Sarah C.; Young, Tracey A.; Knapp, Martin; Brazier, John E.

    2015-01-01

    Utility values to estimate quality-adjusted life years (QALYs) for use in cost-utility analyses are usually elicited from members of the general population. Public attitudes and understanding of dementia in particular may mean that values elicited from the general population may differ from patients and carers for dementia health states. This study examines how the population impacts utility values elicited for dementia health states using interviewer-administered time tradeoff valuation of health states defined by the dementia-specific preference-based measures DEMQOL-U (patient-report) and DEMQOL-Proxy-U (carer-report). Eight DEMQOL-U states were valued by 78 members of the UK general population and 71 patients with dementia of mild severity. Eight DEMQOL-Proxy-U states were valued by 77 members of the UK general population and 71 carers of patients with dementia of mild severity. Random-effects generalized least squares regression estimated the impact of population, dementia health state, and respondent sociodemographic characteristics on elicited values, finding that values for dementia health states differed by population and that the difference varied across dementia health states. Patients with dementia and carers of patients with dementia gave systematically lower values than members of the general population that were not due to differences in the sociodemographic characteristics of the populations. Our results suggest that the population used to produce dementia health state values could impact the results of cost-utility analyses and potentially affect resource allocation decisions; yet, currently, only general population values are available for usage. PMID:25385749

  4. 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

  5. Coming out to care: gay and lesbian carers' experiences of dementia services.

    PubMed

    Price, Elizabeth

    2010-03-01

    This article reports on findings from a qualitative study, undertaken in England that explored the experiences of 21 gay men and lesbian women who care, or cared, for a person with dementia. The aim of the study was to explore how a person's gay or lesbian sexuality might impact upon their experience of providing care in this context. This paper reports on one theme that emerged from the wider study--carers' experiences of 'coming out' to service providers. Respondents were recruited using 'snowballing' methods and the study employed semi-structured interviewing techniques. Data collection occurred over a protracted period (2003-2007), the time scale being determined by (the well documented) difficulties in recruiting respondents from this group of people. Data analysis was undertaken with the intent of developing common and contrary themes using a constant thematic comparative method. The results reported here demonstrate the ways in which carers mediated disclosures of their sexualities to health and social care service providers and, for some, their wider support network. For many carers, responses to these disclosures proved to be a critical issue and one that coloured their experience of providing care. Service providers' reactions are demonstrated as being characterised by, at best, a broad acceptance of gay and lesbian people's circumstances, through to a pervasive disregard of their needs. PMID:19708866

  6. 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

  7. 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. PMID:26033403

  8. 'It terrifies me, the thought of the future': listening to the current concerns of informal carers of people with a learning disability.

    PubMed

    Mansell, Ian; Wilson, Christine

    2010-03-01

    The aim of this article is to report findings from a study that asked carers for their views on a wide range of topics. Issues relevant to the current concerns of carers are reported here. A mixed method triangulated design yielded both quantitative and qualitative data. A total of 647 members of a parent/carer federation were sent a questionnaire with a section on 'current concerns'. The response rate was 23 percent (151 participants). Two focus groups were held with 15 carers who had completed the questionnaire. Issues of concern to carers included access to health and social care information and services; quality and quantity of respite care; suitable educational provision; independence and quality of life (for a person with learning disability); and what would happen to the person with learning disability when the carer was no longer able to carry out their caring role. PMID:20630924

  9. The needs of carers of men with prostate cancer and barriers and enablers to meeting them: a qualitative study in England.

    PubMed

    Sinfield, P; Baker, R; Ali, S; Richardson, A

    2012-07-01

    The aim of this study was to explore the needs of carers of men with prostate cancer and to identify barriers and enablers to meeting these needs. Carers were recruited to focus groups or interviews. These were recorded, transcribed and analysed by two researchers using Nvivo QSR6 and the Framework approach to index, chart and analyse data to identify emergent themes of the needs of carers, and barriers and enablers to meeting these needs. Fifteen carers took part in focus groups and 19 were interviewed. Carers' needs varied and were often unmet because of barriers to existing services. Carers needed: information; emotional support; practical support; effective medical care for the patient. Barriers to carers meeting their needs included: lack of awareness of sources of help; lack of understanding of information; reluctance to ask for help; prioritising the patient's needs. Enablers included better signposting to information and sources of support, and assessment of their needs. Interventions to address these needs should be developed taking account of the barriers and enablers identified here, and the experience of reported interventions for carers of other cancer patients. Carers should be offered an assessment to establish their needs and directed to appropriate sources of help. PMID:22416793

  10. An investigation into the usability of the STAR training and re-skilling website for carers of persons with dementia.

    PubMed

    Boyd, Kyle; Nugent, Chris; Donnelly, Mark; Bond, Raymond; Sterritt, Roy; Hartin, Phillip

    2014-01-01

    Due to the successes in medical science people are now beginning to live much longer. With this brings increased problems associated with ageing, with one exemplar being dementia. Persons with dementia require care with activities of daily living, for example, with washing, dressing and eating. This requires additional care, which is usually provided by family and friends who assume the role of informal carers. Provision of care by informal carers brings irreversible changes to their lives that can lead to depression and feelings of loneliness. In part, these changes are linked with carers having insufficient understanding and training with dementia. The EU funded STAR project created an web portal that aims to provide the necessary online training that carers need, however, the usability of such a provision warrants investigation. This paper presents the findings of a usability test conducted on five carers of people with dementia while using the STAR Training Website. For the 21 usability issues identified, the paper outlines proposed solutions. PMID:25570903

  11. Impact on the individual: what do patients and carers gain, lose and expect from being involved in research?

    PubMed Central

    Ashcroft, Joanne; Wykes, Til; Taylor, Joseph; Crowther, Adam; Szmukler, George

    2016-01-01

    Abstract Background: Study feasibility and deliverability can benefit from involving patients and carers in the research process, known as patient and public involvement (PPI). There is less evidence on the experiences of patients and carers themselves and we require more information across a range of studies, health conditions and research stages. Aims: This study explored how patients and carers in eight diagnostic research specialties have been involved in research, their motivations and the impact involvement had on them. Method: 143 patients and carers across the Clinical Research Network (CRN) responded to an online semi-structured questionnaire (developed using participatory methodology). Quantitative and qualitative data were analysed. Results: A range of benefits were reported, including providing a life focus and an improved relationship with illness. Less positive experiences regarding time and money and lack of acknowledgement were also reported, along with suggestions for improvement. Conclusions: PPI confers many benefits on patients and carers which could increase PPI recruitment if made explicit. More involvement in study recruitment and dissemination would increase the effectiveness of PPI input. Involving a more varied socioeconomic demographic and at an earlier stage is vital. Financial support for lower earners and greater feedback following involvement should also be explored. PMID:26733079

  12. 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

  13. 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

  14. Patient, Carer and Professional Perspectives on Barriers and Facilitators to Quality Care in Advanced Heart Failure

    PubMed Central

    Browne, Susan; Macdonald, Sara; May, Carl R.; Macleod, Una; Mair, Frances S.

    2014-01-01

    Background Those with advanced heart failure (HF) experience high levels of morbidity and mortality, similar to common cancers. However, there remains evidence of inequity of access to palliative care services compared to people with cancer. This study examines patient, carer, and professional perspectives on current management of advanced HF and barriers and facilitators to improved care. Methods Qualitative study involving semi-structured interviews and focus groups with advanced HF patients (n = 30), carers (n = 20), and professionals (n = 65). Data analysed using Normalisation Process Theory (NPT) as the underpinning conceptual framework. Findings Uncertainty is ubiquitous in accounts from advanced HF patients and their caregivers. This uncertainty relates to understanding of the implications of their diagnosis, appropriate treatments, and when and how to seek effective help. Health professionals agree this is a major problem but feel they lack knowledge, opportunities, or adequate support to improve the situation. Fragmented care with lack of coordination and poor communication makes life difficult. Poor understanding of the condition extends to the wider circle of carers and means that requests for help may not be perceived as legitimate, and those with advanced HF are not prioritised for social and financial supports. Patient and caregiver accounts of emergency care are uniformly poor. Managing polypharmacy and enduring concomitant side effects is a major burden, and the potential for rationalisation exists. This study has potential limitations because it was undertaken within a single geographical location within the United Kingdom. Conclusions Little progress is being made to improve care experiences for those with advanced HF. Even in the terminal stages, patients and caregivers are heavily and unnecessarily burdened by health care services that are poorly coordinated and offer fragmented care. There is evidence that these poor experiences

  15. Home/Work: The Roles of Education, Literacy, and Learning in the Networks and Mobility of Professional Women Migrant Carers in Cumbria

    ERIC Educational Resources Information Center

    Cuban, Sondra

    2008-01-01

    This study focuses on a group of highly skilled female migrants who were carers to the elderly, and the roles of education, literacy, and learning in their social networks and mobility in Cumbria, England. Over a one-year period, interviews were conducted with care training specialists, carers, clients, and employers across England, including…

  16. 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…

  17. 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

  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. Construct and empirical validity of the Self-As-Carer Inventory.

    PubMed

    Geden, E; Taylor, S

    1991-01-01

    The Self-As-Carer Inventory was designed to permit individuals to express their perceived capacity to care for self. In the first phase of the study, a 44-item questionnaire was developed and tested through factor analysis primarily using a college population (Geden & Taylor, 1988). After the instrument was revised, a second study, reported here, was conducted with a more heterogeneous population. The age range of the respondents was broadened and the variability of health state and ethnicity was increased. Factor analysis with rotation was conducted on 589 completed inventories using the revised 40-item questionnaire. The 4-factor Promax solution accounted for 52% of the variance. Retention of factors with eigenvalues greater than 1 led to a 6-factor solution accounting for 58% of the variance. Significant positive correlations were found between total scores on the Self-As-Carer Inventory and ratings of health in general (r = .29, p = .0001), health at this moment (r = .25, p = .0001), and an estimate; of the amount of their own self-care provided (r = .36, p = .0001). No differences were found in total scores across health state, defined as respondents' reports of being sick-at-home (n = 130), hospitalized (n = 259), or well (n = 200). PMID:1987556

  20. 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. PMID:21481123

  1. 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…

  2. Partnerships for better mental health worldwide: WPA recommendations on best practices in working with service users and family carers

    PubMed Central

    WALLCRAFT, JAN; AMERING, MICHAELA; FREIDIN, JULIAN; DAVAR, BHARGAVI; FROGGATT, DIANE; JAFRI, HUSSAIN; JAVED, AFZAL; KATONTOKA, SYLVESTER; RAJA, SHOBA; RATAEMANE, SOLOMON; STEFFEN, SIGRID; TYANO, SAM; UNDERHILL, CHRISTPHER; WAHLBERG, HENRIK; WARNER, RICHARD; HERRMAN, HELEN

    2011-01-01

    WPA President M. Maj established the Task Force on Best Practice in Working with Service Users and Carers in 2008, chaired by H. Herrman. The Task Force had the remit to create recommendations for the international mental health community on how to develop successful partnership working. The work began with a review of literature on service user and carer involvement and partnership. This set out a range of considerations for good practice, including choice of appropriate terminology, clarifying the partnership process and identifying and reducing barriers to partnership working. Based on the literature review and on the shared knowledge in the Task Force, a set of ten recommendations for good practice was developed. These recommendations were the basis for a worldwide consultation of stakeholders with expertise as service users, families and carers, and the WPA Board and Council. The results showed a strong consensus across the international mental health community on the ten recommendations, with the strongest agreement coming from service users and carers. This general consensus gives a basis for Task Force plans to seek support for activities to promote shared work worldwide to identify best practice examples and create a resource to assist others to begin successful collaboration. PMID:21991284

  3. 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…

  4. Challenging Behavior Training for Teaching Staff and Family Carers of Children with Intellectual Disabilities: A Preliminary Evaluation

    ERIC Educational Resources Information Center

    Gore, Nick; Umizawa, Hiromi

    2011-01-01

    Training programs on the topic of challenging behaviors have often been offered to teaching staff and family carers of children with intellectual disabilities (ID). These efforts have been found to be effective in bringing about positive changes for both children with ID and those who support them. Generally, such training has been offered to…

  5. "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 "positive…

  6. Life skills profile of patients with schizophrenia and its correlation to a feeling of rejection among key family carers

    PubMed Central

    Manickam, L.S.S; Chandran, R. Satheesh

    2005-01-01

    Background: The behaviour of patients with schizophrenia is of great concern to key family carers. Life skills profile (LSP) is the measure that has considerable importance in assessing the functioning of people with schizophrenia in the community. Aim: To assess the sociodemographic correlates of LSP, and to find the correlation between LSP and the rejection response of key family carers. Methods: The LSP of 48 patients with chronic schizophrenia (29 men and 19 women) was assessed. The rejection responses of key family carers (28 men and 20 women) were evaluated using the Patient Rejection Scale. Results: The LSP did not significantly differ on the variables of gender, income level or attendance of day-care centre. However, there were differences between patients from urban and rural areas. A new dimension of family harmony, added as a subscale to LSP, also did not show any significant difference on the above variables. The rejection responses of key family carers were found to be significantly related to the LSP of the patients and, among the subscales, family harmony and communication were positively related to rejection. Conclusion: Though family interventions have been found to have positive implications on relapse and social functioning of patients with schizophrenia, a model of a family intervention programme for families of patients with schizophrenia needs to be developed. PMID:20711289

  7. Mainstream In-Patient Mental Health Care for People with Intellectual Disabilities: Service User, Carer and Provider Experiences

    ERIC Educational Resources Information Center

    Donner, Ben; Mutter, Robin; Scior, Katrina

    2010-01-01

    Background: Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. However, little is known about the experiences of people with intellectual disabilities who use such services. Materials and Methods: Face-to-face interviews with service users, carers and community…

  8. 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

  9. 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…

  10. 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.

  11. Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia?

    PubMed Central

    King, Michael; Jones, Louise; Vickestaff, Victoria; Sampson, Elizabeth L.

    2016-01-01

    Background and Aims 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. Methods 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. Results 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

  12. 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

  13. Health economics research into supporting carers of people with dementia: a systematic review of outcome measures.

    PubMed

    Jones, Carys; Edwards, Rhiannon Tudor; Hounsome, Barry

    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

  14. 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

  15. 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

    2016-07-01

    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. PMID:27388088

  16. Talking About Looking: Three Approaches to Interviewing Carers of People With Rheumatoid Arthritis About Information Seeking.

    PubMed

    Lee, Richard Philip; Thompson, Ben; Whybrow, Paul; Rapley, Tim

    2016-07-01

    Given the profusion of illness-related information, in this article, we consider how talking about information seeking-and in particular Internet use-is difficult, not because it is necessarily a highly sensitive topic (though it may be), but rather due to the unusual and unfamiliar situation of talking about information seeking. Drawing on interviews conducted as part of a study on the educational needs of carers of people with rheumatoid arthritis, we compare three types of interview for understanding online information seeking: interviews (recall), researcher-led observation (joining participant at the computer), and diaries. We discuss the strengths and weaknesses of each approach and discuss how changing interview questions and the form of interaction can help to produce different types of data, and potentially more meaningful insights. Of the three approaches, conducting interviews with participants while looking at a computer (talking while looking) offered the best opportunities to understand Internet-based information seeking. PMID:26290541

  17. Informal carers: a Marxist analysis of social, political, and economic forces underpinning the role.

    PubMed

    Bridges, J M; Lynam, M J

    1993-03-01

    Increasingly, families are being called to provide care to their elderly family members. Nursing has an important role to play in enabling families to assume such responsibilities. In this article, however, it is argued that nursing needs to examine its goals for nursing care and approaches to care delivery in their broader social, political, and economic context. Marxist theory is introduced and used to raise questions about taken-for-granted aspects of nursing practice and trends in health policy as they relate to family carers for the elderly. The article specifically examines assumptions about family, women, and household economies that are inherent in traditional nursing theory. It is argued that nursing needs to move its focus of action beyond work at the individual and family level to include work at system and policy levels. To do so, nursing must examine theoretical perspectives that enable such an inquiry into practice. PMID:8434902

  18. 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. PMID:27170831

  19. Important features of home-based support services for older Australians and their informal carers.

    PubMed

    McCaffrey, Nikki; Gill, Liz; Kaambwa, Billingsley; Cameron, Ian D; Patterson, Jan; Crotty, Maria; Ratcliffe, Julie

    2015-11-01

    In Australia, newly initiated, publicly subsidised 'Home-Care Packages' designed to assist older people (≥ 65 years of age) living in their own home must now be offered on a 'consumer-directed care' (CDC) basis by service providers. However, CDC models have largely developed in the absence of evidence on users' views and preferences. The aim of this study was to determine what features (attributes) of consumer-directed, home-based support services are important to older people and their informal carers to inform the design of a discrete choice experiment (DCE). Semi-structured, face-to-face interviews were conducted in December 2012-November 2013 with 17 older people receiving home-based support services and 10 informal carers from 5 providers located in South Australia and New South Wales. Salient service characteristics important to participants were determined using thematic and constant comparative analysis and formulated into attributes and attribute levels for presentation within a DCE. Initially, eight broad themes were identified: information and knowledge, choice and control, self-managed continuum, effective co-ordination, effective communication, responsiveness and flexibility, continuity and planning. Attributes were formulated for the DCE by combining overlapping themes such as effective communication and co-ordination, and the self-managed continuum and planning into single attributes. Six salient service features that characterise consumer preferences for the provision of home-based support service models were identified: choice of provider, choice of support worker, flexibility in care activities provided, contact with the service co-ordinator, managing the budget and saving unspent funds. Best practice indicates that qualitative research with individuals who represent the population of interest should guide attribute selection for a DCE and this is the first study to employ such methods in aged care service provision. Further development of

  20. 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

  1. 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

  2. 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.

  3. 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…

  4. Protocol for the Care-IS Trial: a randomised controlled trial of a supportive educational intervention for carers of patients with high-grade glioma (HGG)

    PubMed Central

    Halkett, Georgia K B; Lobb, Elizabeth A; Miller, Lisa; Phillips, Jane L; Shaw, Thérése; Moorin, Rachael; Long, Anne; King, Anne; Clarke, Jenny; Fewster, Stephanie; Hudson, Peter; Agar, Meera; Nowak, Anna K

    2015-01-01

    Introduction High-grade glioma (HGG) is a rapidly progressive and debilitating disease. Primary carers experience significant levels of distress which impacts on their experience of caregiving, the quality of care received and the community in terms of the increased reliance on healthcare due to the potential development of complicated grief. This paper describes the protocol for testing the efficacy and feasibility of an intervention for primary carers of patients with HGG in order to improve preparedness to care and reduce carer distress. Methods Randomised controlled trial. The target population is carers of patients with HGG who are undergoing combined chemoradiotherapy. The intervention consists of 4 components: (1) initial telephone assessment of unmet needs of the carer, (2) tailoring of a personalised resource folder, (3) home visit, (4) ongoing monthly telephone contact and support for 12 months. The control arm will receive usual care. Primary hypothesis This intervention will improve preparedness for caring and reduce carer psychological distress. Secondary hypothesis This intervention will reduce carer unmet needs. The longer term aim of the intervention is to reduce patient healthcare resource utilisation and, by doing so, reduce costs. Assessments will be obtained at baseline, 8 weeks post intervention, then 4, 6 and 12 months. Participants will also complete a healthcare utilisation checklist and proxy performance status which will be assessed at baseline and monthly. 240 carers will be recruited. The sample size is 180. Multilevel mixed effects regression models will be applied to test the effect of the intervention. Ethics Ethics approval has been gained from Curtin University and the participating sites. Dissemination Results will be reported in international peer-reviewed journals. Trial registration number Australian and New Zealand Clinical Trials Registration (ACTRN)12612001147875. PMID:26503395

  5. ‘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 Central

    Davies, F; Edwards, A; Brain, K; Edwards, M; Jones, R; Wallbank, R; Robertson, N P; Wood, F

    2015-01-01

    Objectives 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. Design Semistructured qualitative interviews and subsequent validation focus groups were analysed using inductive thematic analysis. Setting South East Wales, UK. Participants 20 patients with MS and 13 carers were interviewed. Eight patients and two carers participated in focus groups. Results 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. Conclusions 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. PMID:26201723

  6. Implementing and Evaluating the First German Young-Carers Project: Intentions, Pitfalls and the Need for Piloting Complex Interventions

    PubMed Central

    Schlarmann, Jörg große; Metzing-Blau, Sabine; Schnepp, Wilfried

    2011-01-01

    The aim of the study was to develop, implement and evaluate a concept for the first support program for young carers and their families in Germany. This paper intends to critically review the implementation of that study and describe the problems experienced by the research team, including: the complexity of the intervention itself, the difficulty of finding host organizations, the lack of infrastructure, different values and beliefs about the project aims held between the host organization and the research team, shortage of time, identifying and recruiting families among the hidden population of young carers. These initial problems led to the re-constructuring of the original research design. In order to evaluate factors that influenced these difficulties, the original research intentions, emerging problems and their consequences will be presented. PMID:21660183

  7. 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

  8. 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.

  9. Strain and its correlates among carers of people with dementia in low-income and middle-income countries. A 10/66 Dementia Research Group population-based survey

    PubMed Central

    Prince, Martin; Brodaty, Henry; Uwakwe, Richard; Acosta, Daisy; Ferri, Cleusa P; Guerra, Mariella; Huang, Yueqin; Jacob, KS; Llibre Rodriguez, Juan J; Salas, Aquiles; Sosa, Ana Luisa; Williams, Joseph D; Jotheeswaran, AT; Liu, Zhaorui

    2012-01-01

    Objectives In a multi-site population-based study in several middle-income countries, we aimed to investigate relative contributions of care arrangements and characteristics of carers and care recipients to strain among carers of people with dementia. Based on previous research, hypotheses focused on carer sex, care inputs, behavioural and psychological symptoms (BPSD) and socioeconomic status, together with potential buffering effects of informal support and employing paid carers. Methods In population-based catchment area surveys in 11 sites in Latin America, India and China, we analysed data collected from people with dementia and care needs, and their carers. Carer strain was assessed with the Zarit Burden Interview. Results With 673 care recipient/carer dyads interviewed (99% of those eligible), mean Zarit Burden Interview scores ranged between 17.1 and 27.9 by site. Women carers reported more strain than men. The most substantial correlates of carer strain were primary stressors BPSD, dementia severity, needs for care and time spent caring. Socioeconomic status was not associated with carer strain. Those cutting back on work experienced higher strain. There was tentative evidence for a protective effect of having additional informal or paid support. Conclusions Our findings underline the global impact of caring for a person with dementia and support the need for scaling up carer support, education and training. That giving up work to care was prevalent and associated with substantial increased strain emphasizes the economic impact of caring on the household. Carer benefits, disability benefits for people with dementia and respite care should all be considered. Copyright © 2012 John Wiley & Sons, Ltd. PMID:22460403

  10. 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. PMID:10674415

  11. Supporting Family Carers of Community-Dwelling Elder with Cognitive Decline: A Randomized Controlled Trial

    PubMed Central

    Schoenmakers, Birgitte; Buntinx, Frank; Delepeleire, Jan

    2010-01-01

    Objective. Caring for a patient with cognitive decline has an important impact on the general well-being of family caregivers. Although highly appreciated, interventions in dementia home care remain mainly ineffective in terms of well-being. Consequently, in spite of an extensive support system, abrupt ending of home care remains more rule than exception. Method. The hypothesis was that the intervention of a care counselor, coordinating care in quasi-unstructured way during one year, will alleviate caregivers' feelings of depression. The study population was composed of community-dwelling patients with cognitive decline. A care counselor was at the exclusive disposal of the intervention group. Primary outcome measure was caregiver depression. Results. Finally, depression was 6.25 times less frequent in the intervention group. The actual intervention appeared minimal with only ten applications for more support followed by only three interventions effectively carried out. Although caregivers felt burdened and depressed, formal support remained stable. On the other hand, the availability of the care counselor made caregivers feel less depressed with the same amount of support. Conclusion. Carers do not always need to be surrounded with more professionals, but they want to feel more supported. In terms of policy, this could have some important implications. PMID:22332005

  12. 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. PMID:24644162

  13. Evaluation of the Digital Alzheimer Center: Testing Usability and Usefulness of an Online Portal for Patients with Dementia and Their Carers

    PubMed Central

    Droes, Rose-Marie; Sikkes, Sietske; Oostra, Ellen; Lemstra, Afina W

    2016-01-01

    Background Dementia is a progressive and highly disabling neurodegenerative disease that will likely become highly prevalent in the future due to the globally aging population. To improve health care efficiency and quality for dementia care, eHealth could help with, for example, an online portal, such as the Digital Alzheimer Center (DAC) of the Vrije Universiteit Medical Center Amsterdam. It provides up-to-date disease information, peer-to-peer contact, and methods for contacting the hospital and health professionals. Objective We aimed to investigate the usability and usefulness of the DAC for patients with dementia and carers to get insight into the feasibility and value of this eHealth app in dementia care and to recommend potential improvements. Methods A descriptive study among patients, carers, and health care professionals was performed. Mixed methods were used, consisting of observations (n=10, 4 people with dementia, 6 carers), an online survey (n=287; 88 patients, 199 carers), and semistructured interviews (n=18; 6 patients, 6 carers, 6 health care professionals). During the observations, participants performed a set of five different prescribed tasks on the portal. Speed, number of errors, and navigation were noted. The online survey aimed to assess users’ opinions on the portal’s usability and usefulness. Semistructured interviews were conducted in a subsample of patients, carers, and health care professionals to gain more in-depth information. Results In the usability assessment, eight categories of errors were distinguished, of which three were of critical, two of medium, and three of low severity. In the survey, 45% (40/88) of the patients and 53% (105/199) of the carers indicated they used the portal. In all, 33% (12/36) of patients and 61% (62/102) of carers found it easy to learn to work with the portal. Most considered the DAC generally useful: 65% (17/26) of patients and 78% (67/86) of carers found the DAC useful, especially for

  14. Young, gifted, and caring: a project narrative of young carers, their mental health, and getting them involved in education, research and practice.

    PubMed

    McAndrew, Sue; Warne, Tony; Fallon, Debbie; Moran, Paul

    2012-02-01

    Young carers are a global phenomenon. The UK estimates it has in excess of 175 000 young carers, the onset of their caring role often occurring between 8 and 10 years of age. Of these, 17 000 are caring for a parent who has severe mental illness, a significant factor for children entering the health and social care system, as up to 60% experience mental health difficulties themselves. This paper reports on the outcome of a participatory project aimed at better understanding the needs of young people. A World Café event was hosted, bringing together those involved in promoting the mental health of young people in a partnership consortium. The event was led by young service users and carers. Important issues raised by the young carers were being excluded from being included; stuck in the here and now, ignoring the future; a hole in the net; and ensuring the hidden is on the agenda. The World Café gave the university the privilege of insight into what local young carers need to improve their mental health, and more importantly, how we can utilize our skills to help them achieve their goals. PMID:21819510

  15. Exploring the views of GPs, people with dementia and their carers on assistive technology: a qualitative study

    PubMed Central

    Newton, Lisa; Dickinson, Claire; Gibson, Grant; Brittain, Katie; Robinson, Louise

    2016-01-01

    Objectives To explore the views and experiences of people with dementia, their family carers and general practitioners (GPs) on their knowledge and experience of accessing information about, and use of, assistive technology (AT) in dementia care. Design Qualitative methods with semistructured interviews and thematic analysis. Participants 56 participants comprising 17 GPs, 13 people with dementia and 26 family carers. Setting Community care settings in the North East of England. Results 4 main themes emerged: awareness and experience of AT; accessing information on AT; roles and responsibilities in the current care system and the future commissioning of AT services. All participants had practical experience of witnessing AT being used in practice. For people with dementia and their families, knowledge was usually gained from personal experience rather than from health and social care professionals. For GPs, knowledge was largely gained through experiential, patient-led learning. All groups acknowledged the important role of the voluntary sector but agreed a need for clear information pathways for AT; such pathways were perceived to be essential to both service providers and service commissioners. Conclusions People with dementia and their family carers appear to be mainly responsible for driving a gradual increase in both awareness and the use of AT in dementia care. GPs should be equipped with the relevant knowledge to ensure families living with dementia receive appropriate information and support to enable them to live independently for as long as possible. There is an urgent need to simplify current complex community care pathways; as demonstrated in other chronic health conditions, a single point of access and a named lead professional may improve future care. PMID:27178978

  16. Measuring the Impact of Cognitive Prosthetics on the Daily Life of People with Dementia and Their Carers

    NASA Astrophysics Data System (ADS)

    Meiland, Franka; Dröes, Rose-Marie; Sävenstedt, Stefan

    Assistive technologies to support persons with dementia and their carers are used increasingly often. However, little is known about the effectiveness of most assistive devices. Much technology is put on the market without having been properly tested with potential end-users. To increase the chance that an assistive device is well accepted and useful for the target group, it is important, especially in the case of disabled persons, to involve potential users in the development process and to evaluate the impact of using the device on them before implementing it in the daily care and support. When evaluating the impact, decisions have to be made regarding the selection of measuring instruments. Important considerations in the selection process are the underlying domains to be addressed by the assistive technology, the target group and the availability of standardized instruments with good psychometric properties. In this chapter the COGKNOW project is used as a case example to explain how the impact of cognitive prosthetics on the daily lives of people with dementia and their carers can be measured. In COGKNOW a cognitive prosthetic device is being developed to improve the quality of life and autonomy of persons with dementia and to help them to remember and remind, to have social contact, to perform daily activities and to enhance feelings of safety. For all these areas, potential measuring instruments are described. Besides (standardized) measuring instruments, other data collection methods are used as well, such as semi-structured interviews and observations, diaries and in situ measurement. Within the COGKNOW project a first uncontrolled small-scale impact measurement takes place during the development process of the assistive device. However, it is recommended to perform a larger randomized controlled study as soon as the final product is ready to evaluate the impact of the device on persons with dementia and carers before it is released on the market.

  17. Carer and service providers' experiences of individual funding models for children with a disability in rural and remote areas.

    PubMed

    Dew, Angela; Bulkeley, Kim; Veitch, Craig; Bundy, Anita; Lincoln, Michelle; Brentnall, Jennie; Gallego, Gisselle; Griffiths, Scott

    2013-07-01

    There is a global movement for people with a disability towards person-centred practices with opportunities for self-determination and choice. Person-centred approaches may involve individual funding (IF) for the purchase of required support. A shift to a person-centred model and IF should allow people with a disability and their carers greater choice in therapy access. However, individuals who live in rural and remote areas have less choice and access to therapy services than their metropolitan counterparts. Drawing on data from a larger study into therapy service delivery in a rural and remote area of New South Wales, Australia, this study describes some benefits and barriers to using IF to access therapy services in rural areas. Ten carers and 60 service providers participated in audio-recorded focus groups and individual interviews during which IF was discussed. Transcribed data were analysed using thematic analysis and constant comparison. Greater access to and choice of therapy providers were identified as benefits of IF. Four barriers were identified: (i) lack of information and advice; (ii) limited local service options and capacity; (iii) higher costs and fewer services and (iv) complexity of self-managing packages. A range of strategies is required to address the barriers to using IF in rural and remote areas. Carers indicated a need for: accessible information; a local contact person for support and guidance; adequate financial compensation to offset additional travel expenses and coordinated eligibility and accountability systems. Service providers required: coordinated cross-sector approaches; local workforce planning to address therapist shortages; certainty around service viability and growth; clear policies and procedures around implementation of IF. This study highlights the need for further discussion and research about how to overcome the barriers to the optimal use of an IF model for those living in rural and remote areas. PMID:23638843

  18. Dying from cancer in developed and developing countries: lessons from two qualitative interview studies of patients and their carers

    PubMed Central

    Murray, Scott A; Grant, Elizabeth; Grant, Angus; Kendall, Marilyn

    2003-01-01

    Objective 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. Design Scotland: longitudinal study with qualitative interviews. Kenya: cross sectional study with qualitative interviews. Settings Lothian region, Scotland, and Meru District, Kenya. Participants Scotland: 20 patients with inoperable lung cancer and their carers. Kenya: 24 patients with common advanced cancers and their main informal carers. Main outcome measures Descriptions of experiences, needs, and available services. Results 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. Conclusions 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. What is already known on this topic?Cancer treatment is a priority and is well developed in the United KingdomThere is an increasing burden on inadequately funded health services in developing countriesWhat this study adds

  19. Acquiring a Pet Dog Significantly Reduces Stress of Primary Carers for Children with Autism Spectrum Disorder: A Prospective Case Control Study.

    PubMed

    Wright, H F; Hall, S; Hames, A; Hardiman, J; Mills, R; Mills, D S

    2015-08-01

    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 (25-40 weeks after acquisition), using the Parenting Stress Index. Analysis revealed significant improvements in the intervention compared to the control group for Total Stress, Parental Distress and Difficult Child. A significant number of parents in the intervention group moved from clinically high to normal levels of Parental Distress. The results highlight the potential of pet dogs to reduce stress in primary carers of children with an ASD. PMID:25832799

  20. Intimacy--meeting needs and respecting privacy in the care of elderly people: what is a good moral attitude on the part of the nurse/carer?

    PubMed

    Mattiasson, A C; Hemberg, M

    1998-11-01

    This article explores notions of intimacy in the caring context. The aspects discussed are: privacy and intimacy; intimacy as emotional and/or physical closeness; intimacy as touch; sexual intimacy and normal ageing; sexual intimacy and patients suffering from dementia; and intimacy as trust. Examples are given and problems are identified, with reflection on the attitude and behaviour of the carer. It is suggested that when trying to make moral decisions in concrete situations it is imperative that the carer is aware of the values upon which his or her own thinking is based. It is argued that the guiding principle should be the moral assumption that the carer's responsibility can never be interpreted as a right to disregard the wishes of the patient. Hence, the key word in daily care is 'respect'. PMID:9856070

  1. Reliability and Confidence.

    ERIC Educational Resources Information Center

    Test Service Bulletin, 1952

    1952-01-01

    Some aspects of test reliability are discussed. Topics covered are: (1) how high should a reliability coefficient be?; (2) two factors affecting the interpretation of reliability coefficients--range of talent and interval between testings; (3) some common misconceptions--reliability of speed tests, part vs. total reliability, reliability for what…

  2. Recovery from Borderline Personality Disorder: A Systematic Review of the Perspectives of Consumers, Clinicians, Family and Carers

    PubMed Central

    Ng, Fiona Y. Y.; Bourke, Marianne E.; Grenyer, Brin F. S.

    2016-01-01

    Purpose Longitudinal studies support that symptomatic remission from Borderline Personality Disorder (BPD) is common, but recovery from the disorder probably involves a broader set of changes in psychosocial function over and above symptom relief. A systematic review of literature on both symptomatic and personal recovery from BPD was conducted including the views of consumers, clinicians, family and carers. Materials and Methods A PRISMA guided systematic search identified research examining the process of recovery from BPD. Longitudinal studies with a follow-up period of five or more years were included to avoid treatment effects. Results There were 19 studies, representing 11 unique cohorts (1,122 consumers) meeting the review criteria. There was a limited focus on personal recovery and the views of family and carers were absent from the literature. Rates of remission and recovery differ depending upon individual and methodological differences between studies. Data on symptomatic remission, recurrence and diagnosis retainment suggests that BPD is a stable condition, where symptomatic remission is possible and the likelihood of recurrence following a period of remission is low. Conclusion Symptomatic remission from BPD is common. However, recovery including capacities such as engaging in meaningful work was seldom described. Future research needs broader measures of recovery as a sub-syndromal experience, monitoring consumer engagement in meaningful vocation and relationships, with or without the limitations of BPD. PMID:27504634

  3. People with dementia and carers' experiences of dementia care and services: Outcomes of a focus group study.

    PubMed

    Sutcliffe, Caroline L; Roe, Brenda; Jasper, Rowan; Jolley, David; Challis, David J

    2015-11-01

    An ageing population and an associated increase in the prevalence of dementia are of increasing concern in the United Kingdom and worldwide. Recently, the United Kingdom and other European countries implemented national dementia strategies to address this. This paper reports on the outcomes of a focus group study involving people with dementia and carers on their experiences of dementia care and support services in relation to government and third sector agencies' objectives and recommendations. Three focus groups comprising carers and people with dementia (n = 27) were undertaken covering topics related to experiences, service receipt, information sharing and service development. Some participants experienced difficulties or delays in receiving a dementia diagnosis and in accessing appropriate care. The provision of training, timeliness of information, access to appropriate advice, and consistent and flexible services were deemed important. The findings suggest that some issues raised by participants were highlighted in earlier policy objectives and recommendations but remain of central concern. The projected growth in the number of people with dementia coupled with reduced availability of informal care and increased demand for services emphasises the need to transform dementia care in the United Kingdom. PMID:24381211

  4. A General Practice-Based Prevalence Study of Epilepsy among Adults with Intellectual Disabilities and of Its Association with Psychiatric Disorder, Behaviour Disturbance and Carer Stress

    ERIC Educational Resources Information Center

    Matthews, T.; Weston, N.; Baxter, H.; Felce, D.; Kerr, M.

    2008-01-01

    Background: Although the elevated occurrence of epilepsy in people with intellectual disabilities (ID) is well recognized, the nature of seizures and their association with psychopathology and carer strain are less clearly understood. The aims were to determine the prevalence and features of epilepsy in a community-based population of adults with…

  5. "It Is Hard to Stay in England": Itineraries, Routes, and Dead Ends--An (Im)mobility Study of Nurses Who Became Carers

    ERIC Educational Resources Information Center

    Cuban, Sondra

    2010-01-01

    This article presents findings from an Economic Social Research Council (ESRC) study on the roles of education in the trajectories of health care professionals who migrated to England and became carers. The study looks at the downward mobility and deskilling of these women, and their struggles to reverse their bungled career paths. The author maps…

  6. Brief Report: Impact of Applied Behaviour Analysis (ABA) on Carer Burden and Community Participation in Challenging Behaviour--Results from a Randomised Controlled Trial

    ERIC Educational Resources Information Center

    Hassiotis, A.; Robotham, D.; Canagasabey, A.; Marston, L.; Thomas, B.; King, M.

    2012-01-01

    Background: Applied behaviour analysis (ABA) reduces challenging behaviour in people with intellectual disability. There is interest, however, in whether such interventions reduce carer burden and increase community participation in this group. Methods: A 6-month randomised controlled trial was followed by a longer-term naturalistic follow-up of…

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

    ERIC Educational Resources Information Center

    Hoefman, Renske; 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…

  8. The Mutual Benefits of Listening to Young People in Care, with a Particular Focus on Grief and Loss: An Irish Foster Carer's Perspective

    ERIC Educational Resources Information Center

    Murphy, Deirdre; Jenkinson, Hilary

    2012-01-01

    This article explores the mutual benefits for social workers and young people of active listening within a collaborative partnership incorporating foster carers, allowing the possibility to create a virtuous circle. The benefits for young people of increased self-esteem, positive identity and resilience among others are explored. The benefits for…

  9. Respite Care as a Community Care Service: Factors Associated with the Effects on Family Carers of Adults with Intellectual Disability in Taiwan

    ERIC Educational Resources Information Center

    Chou, Yueh-Ching; Tzou, Ping-Yi; Pu, Cheng-Yun; Kroger, Teppo; Lee, Wan-Ping

    2008-01-01

    Background: This study examines the effects and associated factors of respite care, which was legislated as a community service for adults with an intellectual disability (ID) in Taiwan in 1997. Method: A total of 116 family carers who live with an adult with ID and have utilised the respite care program were surveyed using standardised measures.…

  10. Professionals' Views on the Roles and Needs of Family Carers of Adults with Cerebral Palsy and Complex Communication Needs in Hospital

    ERIC Educational Resources Information Center

    Hemsley, Bronwyn; Balandin, Susan; Togher, Leanne

    2008-01-01

    Background: The aim of this study was to explore the views of hospital and disability service staff on the roles and needs of family carers of adults with cerebral palsy (CP) and complex communication needs (CCN) in hospital. Method: We conducted a focus group with six hospital and disability service staff, analysed the content themes of the group…

  11. ‘Doing the hard yards’: carer and provider focus group perspectives of accessing Aboriginal childhood disability services

    PubMed Central

    2013-01-01

    Background Despite a high prevalence of disability, Aboriginal Australians access disability services in Australia less than non-Aboriginal Australians with a disability. The needs of Aboriginal children with disability are particularly poorly understood. They can endure long delays in treatment which can impact adversely on development. This study sought to ascertain the factors involved in accessing services and support for Aboriginal children with a disability. Methods Using the focus group method, two community forums, one for health and service providers and one for carers of Aboriginal children with a disability, were held at an Aboriginal Community Controlled Health Service (ACCHS) in the Sydney, metropolitan area of New South Wales, Australia. Framework analysis was applied to qualitative data to elucidate key issues relevant to the dimensions of access framework. Independent coding consistency checks were performed and consensus of analysis verified by the entire research team, several of whom represented the local Aboriginal community. Results Seventeen health and social service providers representing local area government and non-government-funded health and social service organisations and five carers participated in two separate forums between September and October 2011. Lack of awareness of services and inadequate availability were prominent concerns in both groups despite geographic proximity to a major metropolitan area with significant health infrastructure. Carers noted racism, insufficient or non-existent services, and the need for an enhanced role of ACCHSs and AHWs in disability support services. Providers highlighted logistical barriers and cultural and historical issues that impacted on the effectiveness of mainstream services for Aboriginal people. Conclusions Despite dedicated disability services in an urban community, geographic proximity does not mitigate lack of awareness and availability of support. This paper has enumerated a number of

  12. A qualitative study into the use of formal services for dementia by carers from culturally and linguistically diverse (CALD) communities

    PubMed Central

    2012-01-01

    Background People with dementia and their family carers need to be able to access formal services in the community to help maintain their wellbeing and independence. While knowing about and navigating one’s way through service systems is difficult for most people, it is particularly difficult for people from culturally and linguistically diverse (CALD) communities. This study addresses a lack of literature on the use of formal services for dementia by people from CALD backgrounds by examining the experiences and perceptions of dementia caregiving within four CALD communities – Italian, Chinese, Spanish and Arabic-speaking – in south western Sydney, Australia. Methods The study used a qualitative design and the methods included focus groups with family carers and one-to-one interviews with bilingual/bicultural community workers, bilingual general practitioners and geriatricians. A total of 121 family carers participated in 15 focus groups and interviews were held with 60 health professionals. All fieldwork was audiotaped, transcribed and subjected to thematic analysis. Results People from CALD communities are often unfamiliar with the concept of formal services and there may be strong cultural norms about maintaining care within the family, rather than relying on external services. CALD communities often have limited knowledge of services. There is a preference for services that will allow families to keep their relative at home, for safety as well as cultural reasons, and they are particularly reluctant to use residential care. While there is a preference for ethno-specific or multicultural services, mainstream services also need to ensure they are more flexible in providing culturally appropriate care. Positive outcomes occur when ethno-specific services work in partnership with mainstream programs. Dementia service providers need to develop a trusting relationship with their local CALD communities and promote their services in a way that is understandable

  13. More than what the eye can see: the emotional journey and experience of powerlessness of integrated care service users and their carers

    PubMed Central

    Boudioni, Markella; Hallett, Nina; Lora, Cristina; Couchman, Wendy

    2015-01-01

    Purpose This article presents the emotional journey and experience of powerlessness of integrated care service users and carers. Materials and methods The experiences of seven integrated care service users and carers affected by complex conditions in a London borough were captured as video stories. The integrated care service coordinated a system of health and social care: primary care, community matrons, social workers, and the voluntary sector. The service was designed to respond to identified cases of high-risk individuals with long-term, multiple, and age-related conditions needing preventive interventions. The video stories were analyzed by researchers in collaboration with service users using a visual thematic qualitative approach. This report is part of an independent analysis of the integrated care service evaluation that used the experience-based codesign model. Results The findings are presented in the respective contexts of people with complex conditions and their carers. The overwhelming feelings and emotions of both were loss of control and power throughout their emotional journey, with family carers adopting a protective attitude toward the patients. Their experience of powerlessness was variable throughout their emotional journey. They were affected more strongly when in need of extra help and support and while they were undergoing the process of receiving extra services. When they were receiving help and support outside and within hospitals, some participants were empowered, gaining skills and knowledge by being provided with the mechanisms to cope with their condition at present and in the future. Conclusion Feelings of powerlessness were very common among integrated care service users and their carers. Powerless/empowerment has been poorly investigated to date. Visual methods and collaborative visual analysis with service users have proved to be powerful methods too, but have been rarely reported. PMID:25848232

  14. Burden on family carers and care-related financial strain at the end of life: a cross-national population-based study

    PubMed Central

    Van den Block, Lieve; Pardon, Koen; Miccinesi, Guido; Vega Alonso, Tomás; Boffin, Nicole; Donker, Gé A.; Cancian, Maurizio; López-Maside, Aurora; Onwuteaka-Philipsen, Bregje D.; Deliens, Luc

    2014-01-01

    Background: The rising number of deaths from cancer and other life-limiting illnesses is accompanied by a growing number of family carers who provide long-lasting care, including end-of-life care. This population-based epidemiological study aimed to describe and compare in four European countries the prevalence of and factors associated with physical or emotional overburden and difficulties in covering care-related costs among family carers of people at the end of life. Methods: A cross-national retrospective study was conducted via nationwide representative sentinel networks of general practitioners (GPs). Using a standardized form, GPs in Belgium, The Netherlands, Italy and Spain recorded information on the last 3 months of life of every deceased adult practice patient (1 January 2009–31 December 2010). Sudden deaths were excluded. Results: We studied 4466 deaths. GPs judged family carers of 28% (Belgium), 30% (The Netherlands), 35% (Spain) and 71% (Italy) of patients as physically/emotionally overburdened (P < 0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P < 0.001). Patients <85 years of age (Belgium, Italy) had higher odds of having physically/emotionally overburdened family carers and financial burden. Death from non-malignant illness (vs. cancer) (Belgium and Italy) and dying at home compared with other locations (The Netherlands and Italy) were associated with higher odds of difficulties in covering care-related costs. Conclusion: In all countries studied, and particularly in Italy, GPs observed a considerable extent of physical/emotional overburden as well as difficulties in covering care-related costs among family carers of people at the end of life. Implications for health- and social care policies are discussed. PMID:24642602

  15. A pilot of an intervention delivered to Chinese- and Spanish-speaking carers of people with dementia in Australia.

    PubMed

    Leone, Desiree; Carragher, Natacha; Santalucia, Yvonne; Draper, Brian; Thompson, Larry W; Shanley, Christopher; Mollina, Angelica; Chen, Langduo; Kyriazopoulos, Helena; Thompson, Dolores Gallagher

    2014-02-01

    There are limited language- and culture-specific support programs for carers of people with dementia living in Australia. A group intervention for use with Chinese and Spanish speakers in the United States was adapted to the Australian context, and a pilot study was undertaken with these 2 communities. The intervention is based on a cognitive behavioral therapy approach and was delivered by bilingual health professionals. The adapted material comprised 7 sessions, spanning 2 hours in duration. All 22 participants completed the Depression Anxiety and Stress Scale-Short form (DASS-21) pre- and postintervention. A significant decrease in depression, anxiety, and stress was observed among Spanish speakers; a significant decrease in depression and anxiety was present among the Chinese speakers. The implications are considered in the context of Australia's changing aged care service system. PMID:24085251

  16. The involvement of users and carers in health and social research: the realities of inclusion and engagement.

    PubMed

    Read, Sue; Maslin-Prothero, Sian

    2011-05-01

    In this article we explore the challenges to researchers intending to involve vulnerable populations in health and social care research, and provide evidence-based recommendations to support the proactive inclusion of these populations in the research process. We provide a rationale for the study, followed by the introduction and descriptions of our research experiences (presented as two case studies) to provide a contextual backcloth for the discussion.We highlight the inherent challenges in empowering vulnerable populations in research, based on the combination of our own and other people's experiences. Collectively, these illustrate and underpin practice issues, relate theory to practice in a meaningful way, and facilitate the recognition of the realities in future development in this important area of involving users and carers. We conclude by providing recommendations for future practice and research development from a wider, international perspective. PMID:21172921

  17. 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.

  18. 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,…

  19. Reliability and validity of a new Medication Adherence Rating Scale (MARS) for the psychoses.

    PubMed

    Thompson, K; Kulkarni, J; Sergejew, A A

    2000-05-01

    Medication compliance is one of the foremost problems affecting neuroleptic efficacy in psychiatric patients. To date, compliancy has most commonly been assessed with the Drug Attitude Inventory (DAI) developed by Hogan et al. (Hogan, T.P., Awad, A.G., Eastwood, R., 1983. A self-report scale predictive of drug compliance in schizophrenics: reliability and discriminative validity. Psychol. Med. 13, 177-183). The present study identified several deficiencies in the DAI. Using the partial credit version of the Item Response Theory measurement model, the DAI was refined with the aim of greater validity and clinical utility. The new inventory was administered to 66 patients, the majority of whom were diagnosed with schizophrenia. When available, lithium levels and carer ratings of compliance were also recorded and used to verify compliancy. The new inventory appears to be a valid and reliable measure of compliancy for psychoactive medications. PMID:10785582

  20. Effects of case management in community aged care on client and carer outcomes: a systematic review of randomized trials and comparative observational studies

    PubMed Central

    2012-01-01

    Background Case management has been applied in community aged care to meet frail older people’s holistic needs and promote cost-effectiveness. This systematic review aims to evaluate the effects of case management in community aged care on client and carer outcomes. Methods We searched Web of Science, Scopus, Medline, CINAHL (EBSCO) and PsycINFO (CSA) from inception to 2011 July. Inclusion criteria were: no restriction on date, English language, community-dwelling older people and/or carers, case management in community aged care, published in refereed journals, randomized control trials (RCTs) or comparative observational studies, examining client or carer outcomes. Quality of studies was assessed by using such indicators as quality control, randomization, comparability, follow-up rate, dropout, blinding assessors, and intention-to-treat analysis. Two reviewers independently screened potentially relevant studies, extracted information and assessed study quality. A narrative summary of findings were presented. Results Ten RCTs and five comparative observational studies were identified. One RCT was rated high quality. Client outcomes included mortality (7 studies), physical or cognitive functioning (6 studies), medical conditions (2 studies), behavioral problems (2 studies) , unmet service needs (3 studies), psychological health or well-being (7 studies) , and satisfaction with care (4 studies), while carer outcomes included stress or burden (6 studies), satisfaction with care (2 studies), psychological health or well-being (5 studies), and social consequences (such as social support and relationships with clients) (2 studies). Five of the seven studies reported that case management in community aged care interventions significantly improved psychological health or well-being in the intervention group, while all the three studies consistently reported fewer unmet service needs among the intervention participants. In contrast, available studies reported mixed

  1. HELIOS Critical Design Review: Reliability

    NASA Technical Reports Server (NTRS)

    Benoehr, H. C.; Herholz, J.; Prem, H.; Mann, D.; Reichert, L.; Rupp, W.; Campbell, D.; Boettger, H.; Zerwes, G.; Kurvin, C.

    1972-01-01

    This paper presents Helios Critical Design Review Reliability form October 16-20, 1972. The topics include: 1) Reliability Requirement; 2) Reliability Apportionment; 3) Failure Rates; 4) Reliability Assessment; 5) Reliability Block Diagram; and 5) Reliability Information Sheet.

  2. Can There Be Reliability without "Reliability?"

    ERIC Educational Resources Information Center

    Mislevy, Robert J.

    2004-01-01

    An "Educational Researcher" article by Pamela Moss (1994) asks the title question, "Can there be validity without reliability?" Yes, she answers, if by reliability one means "consistency among independent observations intended as interchangeable" (Moss, 1994, p. 7), quantified by internal consistency indices such as KR-20 coefficients and…

  3. REMCARE: Pragmatic Multi-Centre Randomised Trial of Reminiscence Groups for People with Dementia and their Family Carers: Effectiveness and Economic Analysis

    PubMed Central

    Orrell, Martin; Bruce, Errollyn; Edwards, Rhiannon T.; Hounsome, Barry; Keady, John; Orgeta, Vasiliki; Rees, Janice

    2016-01-01

    Background Joint reminiscence groups, involving people with dementia and family carers together, are popular, but the evidence-base is limited. This study aimed to assess the effectiveness and cost-effectiveness of joint reminiscence groups as compared to usual care. Methods This multi-centre, pragmatic randomised controlled trial had two parallel arms: intervention group and usual-care control group. A restricted dynamic method of randomisation was used, with an overall allocation ratio of 1:1, restricted to ensure viable sized intervention groups. Assessments, blind to treatment allocation, were carried out at baseline, three months and ten months (primary end-point), usually in the person's home. Participants were recruited in eight centres, mainly through NHS Memory Clinics and NHS community mental health teams. Included participants were community resident people with mild to moderate dementia (DSM-IV), who had a relative or other care-giver in regular contact, to act as informant and willing and able to participate in intervention. 71% carers were spouses. 488 people with dementia (mean age 77.5)were randomised: 268 intervention, 220 control; 350 dyads completed the study (206 intervention, 144 control). The intervention evaluated was joint reminiscence groups (with up to 12 dyads) weekly for twelve weeks; monthly maintenance sessions for further seven months. Sessions followed a published treatment manual and were held in a variety of community settings. Two trained facilitators in each centre were supported by volunteers. Primary outcome measures were self-reported quality of life for the person with dementia (QoL-AD), psychological distress for the carer (General Health Questionnaire, GHQ-28). Secondary outcome measures included: autobiographical memory and activities of daily living for the person with dementia; carer stress for the carer; mood, relationship quality and service use and costs for both. Results The intention to treat analysis (ANCOVA

  4. 'Singing for the Brain': A qualitative study exploring the health and well-being benefits of singing for people with dementia and their carers.

    PubMed

    Osman, Sara Eldirdiry; Tischler, Victoria; Schneider, Justine

    2014-11-24

    Dementia has detrimental effects on cognitive, psychological and behavioural functioning, as well as significant impact on those who provide care. There is a need to find suitable psychosocial interventions to help manage the condition, enhance well-being, and to provide support for caregivers. This study explored the impact of Singing for the Brain™, an intervention based on group singing activities developed by The Alzheimer's Society for people with dementia and their carers. This qualitative study used semi-structured interviews with people with dementia and their carers. Ten interviews involving 20 participants were analysed thematically. Social inclusiveness and improvements in relationships, memory and mood were found to be especially important to participants. As well as enjoying the sessions, participants found that attending Singing for the Brain™ helped in accepting and coping with dementia. PMID:25425445

  5. Dementia and Robotics: People with Advancing Dementia and Their Carers Driving an Exploration into an Engineering Solution to Maintaining Safe Exercise Regimes.

    PubMed

    Cooper, Carol; Penders, Jacques; Procter, Paula M

    2016-01-01

    The merging of the human world and the information technology world is advancing at a pace, even for those with dementia there are many useful smart 'phone applications including reminders, family pictures display, GPS functions and video communications. This paper will report upon initial collaborative work developing a robotic solution to engaging individuals with advancing dementia in safe exercise regimes. The research team has been driven by the needs of people with advancing dementia and their carers through a focus group methodology, the format, discussions and outcomes of these groups will be reported. The plans for the next stage of the research will be outlined including the continuing collaboration with advancing dementia and their carers. PMID:27332260

  6. "I Can't Go to School and Leave Her in so Much Pain": Educational Shortfalls among Adolescent "Young Carers" in the South African AIDS Epidemic

    ERIC Educational Resources Information Center

    Cluver, L.; Operario, D.; Lane, T.; Kganakga, M.

    2012-01-01

    "I go to the hospital with my mother when she is sick. I can't go to school and leave her in so much pain. I won't concentrate." Millions of adolescents live with AIDS-affected parents or primary caregivers. Little is known about educational impacts of living in an AIDS-affected home, or of acting as a "young carer" in the context of AIDS. This…

  7. It is always on your mind: experiences and perceptions of falling of older people and their carers and the potential of a mobile falls detection device.

    PubMed

    Williams, Veronika; Victor, Christina R; McCrindle, Rachel

    2013-01-01

    Background. Falls and fear of falling present a major risk to older people as both can affect their quality of life and independence. Mobile assistive technologies (AT) fall detection devices may maximise the potential for older people to live independently for as long as possible within their own homes by facilitating early detection of falls. Aims. To explore the experiences and perceptions of older people and their carers as to the potential of a mobile falls detection AT device. Methods. Nine focus groups with 47 participants including both older people with a range of health conditions and their carers. Interviews were audio recorded, transcribed verbatim, and thematically analysed. Results. Four key themes were identified relating to participants' experiences and perceptions of falling and the potential impact of a mobile falls detector: cause of falling, falling as everyday vulnerability, the environmental context of falling, and regaining confidence and independence by having a mobile falls detector. Conclusion. The perceived benefits of a mobile falls detector may differ between older people and their carers. The experience of falling has to be taken into account when designing mobile assistive technology devices as these may influence perceptions of such devices and how older people utilise them. PMID:24454358

  8. Perceptions of heatwave risks to health: results of an qualitative interview study with older people and their carers in Freiburg, Germany

    PubMed Central

    Bittner, Martin-Immanuel; Stößel, Ulrich

    2012-01-01

    Aims and objectives: Heatwaves can pose a severe threat to health, especially to older people. However, warnings do not necessarily lead to preventive action. This study aims at exploring individual risk perception and adaptive measures of older people and their carers. Their views are explored, taking into account personal backgrounds. Methods: Questionnaire-based interviews were administered to 20 men and women (64–94 years, living in their own homes or nursing homes) and 13 carers. A qualitative analysis following a framework approach was performed. Results: The majority of respondents stated that older people might be compromised by heatwaves; however, a large proportion of respondents saw themselves as less affected than the average population. Most respondents adopted preventive measures during heatwaves and a majority received warnings or pieces of information. The role of general practitioners in direct warning situations was judged controversial. Survey respondents displayed resistance to the use of technical devices to monitor potentially dangerous situations. In addition, the results support many previous findings. In particular, the relative concepts of ageing, variety of information channels used, and control orientations could be confirmed. Conclusions: General practitioners hold a position of trust and play a central role in the promotion of preventive action, but there are also limitations to their outreach. Many respondents could be classified as socially active, which has implications for preventive information campaigns. Information campaigns using different channels and targeting a larger audience should be considered. The degree of information of carers can partly be improved. PMID:23082104

  9. New approaches to health and well-being for dementia day-care clients, family carers and day-care staff.

    PubMed

    Kilstoff, K; Chenoweth, L

    1998-06-01

    This study was conducted in one multicultural dementia day-care centre over a period of 18 months. It introduced a gentle hand treatment for clients using three essential oils. The study evolved out of the process of action research where the family carers and day-care staff participated with the researchers to choose, design, develop and evaluate a hand treatment programme. Data was collected through in-depth interviews pre- and post-treatment, focus group discussions, client observation logbooks and a disability scale. The findings indicate a positive strengthening of the relationship between the person with dementia and their family carer, and an improvement in feelings of health and well-being for both. The specific improvements for clients include increased alertness, self-hygiene, contentment, initiation of toileting, sleeping at night and reduced levels of agitation, withdrawal and wandering. Family carers have reported less distress, improved sleeping patterns and feelings of calm. They also found the treatment useful in helping them manage the difficult behaviours exhibited by their relative with dementia. The benefits of this treatment for nursing practice are that it is safe, effective and easily administered by staff in any setting. PMID:9748936

  10. A Dynamic Interactive Social Chart in Dementia CareAttuning Demand and Supply in the Care for Persons with Dementia and their Carers.

    PubMed

    Dröes, R M; Meiland, F J M; Doruff, C; Varodi, I; Akkermans, H; Baida, Z; Faber, E; Haaker, T; Moelaert, F; Kartseva, V; Tan, Y H

    2005-01-01

    We-centric services may play an important role in the field of care and support for elderly persons with dementia and their carers. They may solve problems, such as fragmentation of care, gaps in the continuum of care and welfare services, and inefficient and uncustomized service delivery to patients and carers. In the FRUX Health Care pilot opportunities for we-centric, context-sensitive service bundles in the field of dementia care will be explored. The service on which we focus in this paper is a dynamic interactive social chart for dementia care (DEM-DISC). The feasibility of DEM-DISC will be investigated from a domain specific content perspective (needs, offerings, information and advice), an ICT perspective (ontology and application), a user perspective (persons with dementia, their carers and professionals/organizations), and an organisational perspective (necessary collaboration, governance and control, business modelling). A first demonstrator (validator) of the DEM-DISC will be designed, built and evaluated. Future possibilities to connect DEM-DISC to actual service delivery will be explored. In this paper we discuss the most important research questions from the different perspectives and the methods used to answer them. PMID:15923777

  11. 'The living death of Alzheimer's' versus 'Take a walk to keep dementia at bay': representations of dementia in print media and carer discourse.

    PubMed

    Peel, Elizabeth

    2014-07-01

    Understanding dementia is a pressing social challenge. This article draws on the 'Dementia talking: care conversation and communication' project which aims to understand how talk about, and to people living with dementia is constructed. In this article I draw on the construction of dementia manifest in two data sets - a corpus of 350 recent UK national newspaper articles and qualitative data derived from in-depth interviews with informal carers. These data were analysed using a thematic discursive approach. A 'panic-blame' framework was evident in much of the print media coverage. Dementia was represented in catastrophic terms as a 'tsunami' and 'worse than death', juxtaposed with coverage of individualistic behavioural change and lifestyle recommendations to 'stave off' the condition. Contrary to this media discourse, in carers' talk there was scant use of hyperbolic metaphor or reference to individual responsibility for dementia, and any corresponding blame and accountability. I argue that the presence of individualistic dementia 'preventative' behaviour in media discourse is problematic, especially in comparison to other more 'controllable' and treatable chronic conditions. Engagement with, and critique of, the nascent panic-blame cultural context may be fruitful in enhancing positive social change for people diagnosed with dementia and their carers. PMID:24935028

  12. Reliability computation from reliability block diagrams

    NASA Technical Reports Server (NTRS)

    Chelson, P. O.; Eckstein, R. E.

    1971-01-01

    A method and a computer program are presented to calculate probability of system success from an arbitrary reliability block diagram. The class of reliability block diagrams that can be handled include any active/standby combination of redundancy, and the computations include the effects of dormancy and switching in any standby redundancy. The mechanics of the program are based on an extension of the probability tree method of computing system probabilities.

  13. Human Reliability Program Overview

    SciTech Connect

    Bodin, Michael

    2012-09-25

    This presentation covers the high points of the Human Reliability Program, including certification/decertification, critical positions, due process, organizational structure, program components, personnel security, an overview of the US DOE reliability program, retirees and academia, and security program integration.

  14. Power electronics reliability analysis.

    SciTech Connect

    Smith, Mark A.; Atcitty, Stanley

    2009-12-01

    This report provides the DOE and industry with a general process for analyzing power electronics reliability. The analysis can help with understanding the main causes of failures, downtime, and cost and how to reduce them. One approach is to collect field maintenance data and use it directly to calculate reliability metrics related to each cause. Another approach is to model the functional structure of the equipment using a fault tree to derive system reliability from component reliability. Analysis of a fictitious device demonstrates the latter process. Optimization can use the resulting baseline model to decide how to improve reliability and/or lower costs. It is recommended that both electric utilities and equipment manufacturers make provisions to collect and share data in order to lay the groundwork for improving reliability into the future. Reliability analysis helps guide reliability improvements in hardware and software technology including condition monitoring and prognostics and health management.

  15. Reliable Design Versus Trust

    NASA Technical Reports Server (NTRS)

    Berg, Melanie; LaBel, Kenneth A.

    2016-01-01

    This presentation focuses on reliability and trust for the users portion of the FPGA design flow. It is assumed that the manufacturer prior to hand-off to the user tests FPGA internal components. The objective is to present the challenges of creating reliable and trusted designs. The following will be addressed: What makes a design vulnerable to functional flaws (reliability) or attackers (trust)? What are the challenges for verifying a reliable design versus a trusted design?

  16. Reliability model generator specification

    NASA Technical Reports Server (NTRS)

    Cohen, Gerald C.; Mccann, Catherine

    1990-01-01

    The Reliability Model Generator (RMG), a program which produces reliability models from block diagrams for ASSIST, the interface for the reliability evaluation tool SURE is described. An account is given of motivation for RMG and the implemented algorithms are discussed. The appendices contain the algorithms and two detailed traces of examples.

  17. Predicting software reliability

    NASA Technical Reports Server (NTRS)

    Littlewood, B.

    1989-01-01

    A detailed look is given to software reliability techniques. A conceptual model of the failure process is examined, and some software reliability growth models are discussed. Problems for which no current solutions exist are addressed, emphasizing the very difficult problem of safety-critical systems for which the reliability requirements can be enormously demanding.

  18. Care arrangements for community-dwelling people with dementia in Germany as perceived by informal carers - a cross-sectional pilot survey in a provincial-rural setting.

    PubMed

    von Kutzleben, Milena; Reuther, Sven; Dortmann, Olga; Holle, Bernhard

    2016-05-01

    The majority of people with dementia live at home, and informal carers assume the role of key care providers, often supported by formal services. The purpose of this pilot study was to assess home-based care arrangements, to illustrate utilisation of formal services over time and to identify factors associated with perceived stability of the care situation from the informal carer's perspective. A self-administered questionnaire (D-IVA 'Instrument for Assessing Home-Based Care Arrangements for People with Dementia') was developed and distributed in a provincial-rural setting in Germany as a cross-sectional survey. Data analysis used descriptive statistics, unbiased conditional inference trees and thematic analysis for open-ended questions. In total, 84 care arrangements were assessed. The majority of participants were direct relatives of the care-dependent person [mostly adult children (48.8%) or spouses (27.4%)]. Formal services were already sought in the first year after onset of memory problems. The most frequently used formal services were home care nursing services (53.0%), day care (49.4%) and respite care (29.6%), whereas 15.5% did not use any type of formal support. Companion home visit, home care nursing service and day care were used over the longest periods of time. The recruitment strategy used in this study may have recruited persons who were relatively more dependent on their informal carers. In this small sample, carers' perceived stability of the care situation was high, and this was associated with the country of origin and sex of the person with dementia (P = 0.004 and 0.023 respectively). Most care arrangements consisted of a mix of informal and formal services. However, informal carers assumed prime responsibility. The questionnaire D-IVA proved to be suitable. It remains a challenge to further examine factors associated with perceived stability and to explain the phenomenon in its whole complexity. Further research using the D-IVA should

  19. 'Learning Diabetes'--a multi-media learning package for patients, carers and professionals to improve chronic disease management.

    PubMed

    Day, J L; Rayman, G; Hall, L; Davies, P

    1997-01-01

    A multi-media program for those with insulin and non-insulin dependent diabetes, and for their carers, has been produced. It is delivered on CDROM and contains an extensive amount of very high quality generated video of patients using short clips (maximum 2 min) totalling 2.5 h in 240 files using MPEG compression. The video is combined with a wide range of graphic based activities engaging the user in fully interactive processes and allowing them to obtain extensive understanding of the disease and to relate to attitudes and perceptions about it from those with the same condition. The program is robust and appears to meet the educational needs for its extent of interactivity, degree of choice for the user and provision of information based on real patient experience. It is easily used and modified to meet users of different socio-cultural needs and can be translated into different languages. It offers the opportunity not only for increased learning and improved self-management of those with diabetes, but also greater understanding by those who care for them, both professional and non-professional. Using the same framework, programs are being developed for other chronic diseases including asthma and hypertension. PMID:9183782

  20. Reasons for measles cases not being vaccinated with MMR: investigation into parents' and carers' views following a large measles outbreak.

    PubMed

    McHale, P; Keenan, A; Ghebrehewet, S

    2016-03-01

    Uptake rates for the combined measles, mumps and rubella (MMR) vaccine have been below the required 95% in the UK since a retracted and discredited article linking the MMR vaccine with autism and inflammatory bowel disease was released in 1998. This study undertook semi-structured telephone interviews among parents or carers of 47 unvaccinated measles cases who were aged between 13 months and 9 years, during a large measles outbreak in Merseyside. Results showed that concerns over the specific links with autism remain an important cause of refusal to vaccinate, with over half of respondents stating this as a reason. A quarter stated child illness during scheduled vaccination time, while other reasons included general safety concerns and access issues. Over half of respondents felt that more information or a discussion with a health professional would help the decision-making process, while a third stated improved access. There was clear support for vaccination among respondents when asked about current opinions regarding MMR vaccine. The findings support the hypothesis that safety concerns remain a major barrier to MMR vaccination, and also support previous evidence that experience of measles is an important determinant in the decision to vaccinate. PMID:26265115

  1. First Aid Recommendations for Psychosis: Using the Delphi Method to Gain Consensus Between Mental Health Consumers, Carers, and Clinicians

    PubMed Central

    Langlands, Robyn L.; Jorm, Anthony F.; Kelly, Claire M.; Kitchener, Betty A.

    2008-01-01

    Background: Members of the general public often lack the knowledge and skills to intervene effectively to help someone who may be developing a psychotic illness before appropriate professional help is received. Methods: We used the Delphi method to determine recommendations on first aid for psychosis. An international panel of 157 mental health consumers, carers, and clinicians completed a 146-item questionnaire about how a member of the public could help someone who may be experiencing psychosis. The panel members rated each questionnaire item according to whether they believed the statement should be included in the first aid recommendations. The results were analyzed by comparing consensus rates across the 3 groups. Three rounds of ratings were required to consolidate consensus levels. Results: Eighty-nine items were endorsed by ≥80% of panel members from all 3 groups as essential or important for psychosis first aid. These items were grouped under the following 9 headings: how to know if someone is experiencing psychosis; how to approach someone who may be experiencing psychosis; how to be supportive; how to deal with delusions and hallucinations; how to deal with communication difficulties; whether to encourage the person to seek professional help; what to do if the person does not want help; what to do in a crisis situation when the person has become acutely unwell; what to do if the person becomes aggressive. Conclusions: These recommendations will improve the provision of first aid to individuals who are developing a psychotic disorder by informing the content of training courses. PMID:17768307

  2. Efficacy of a self-help manual in increasing resilience in carers of adults with depression in Thailand.

    PubMed

    McCann, Terence V; Songprakun, Wallapa; Stephenson, John

    2016-02-01

    Caring for a person with a mental illness can have adverse effects on caregivers; however, little is known about how best to help such caregivers. The aim of the present study was to examine the efficacy of a cognitive behaviour therapy-guided self-help manual in increasing resilience in caregivers of individuals with depression, in comparison to caregivers who receive routine support only. A randomized, controlled trial was conducted, following CONSORT guidelines, with 54 caregivers allocated to parallel intervention (self-help manual) (n = 27) or control (standard support) (n = 27) groups. Resilience was assessed at baseline, post-test (week 8), and follow up (week 12). Intention-to-treat analyses were undertaken. Repeated-measures ANOVA indicated a significant difference in resilience scores between the three time points, showing a large effect. Pairwise comparisons between intervention and control groups indicated resilience to be significantly different between baseline and post-test, and between baseline and follow up, but not between post-test and follow up. Overall, the intervention group showed a slightly greater increase in resilience over time than the control group; however, the time-group interaction was not significant. Guided self-help is helpful in improving caregivers' resilience and could be used as an adjunct to the limited support provided to carers by mental health nurses and other clinicians. PMID:26666688

  3. Information needs and information-seeking preferences of ALS patients and their carers.

    PubMed

    Abdulla, Susanne; Vielhaber, Stefan; Machts, Judith; Heinze, Hans-Jochen; Dengler, Reinhard; Petri, Susanne

    2014-12-01

    Our objective was to investigate information-seeking behaviour in patients with ALS and their caregivers and their rating of the usefulness of different information sources in Germany. Surveys were made on 106 patients and 100 caregivers in two university ALS outpatient clinics. Before seeing a doctor, 28% of patients and 23% of caregivers had used other sources to find symptom related information, mostly the internet. Although two-thirds were satisfied with the means of diagnosis disclosure, 88% of patients and 85% of caregivers searched for additional information, most often the internet (patients 72%, caregivers 85%), followed by patient brochures (patients 58%, caregivers 66%). Internet, patient brochures and the 'German Neuromuscular Disease Society' were rated most frequently as useful/very useful. Traditional print media and interpersonal contacts were also frequently used and most respondents relied on more than one source for information. Only few respondents used the internet for exchange with other patients. Two-thirds wanted to discuss web contents with their physician. In conclusion, patients with ALS and their caregivers clearly have additional information needs. Besides traditional information sources, the internet is frequently used. Therefore, reliable and useful websites should be provided. Patients' and caregivers' need to discuss their findings with the physician should be acknowledged. PMID:25007829

  4. Human reliability analysis

    SciTech Connect

    Dougherty, E.M.; Fragola, J.R.

    1988-01-01

    The authors present a treatment of human reliability analysis incorporating an introduction to probabilistic risk assessment for nuclear power generating stations. They treat the subject according to the framework established for general systems theory. Draws upon reliability analysis, psychology, human factors engineering, and statistics, integrating elements of these fields within a systems framework. Provides a history of human reliability analysis, and includes examples of the application of the systems approach.

  5. Recalibrating software reliability models

    NASA Technical Reports Server (NTRS)

    Brocklehurst, Sarah; Chan, P. Y.; Littlewood, Bev; Snell, John

    1989-01-01

    In spite of much research effort, there is no universally applicable software reliability growth model which can be trusted to give accurate predictions of reliability in all circumstances. Further, it is not even possible to decide a priori which of the many models is most suitable in a particular context. In an attempt to resolve this problem, techniques were developed whereby, for each program, the accuracy of various models can be analyzed. A user is thus enabled to select that model which is giving the most accurate reliability predictions for the particular program under examination. One of these ways of analyzing predictive accuracy, called the u-plot, in fact allows a user to estimate the relationship between the predicted reliability and the true reliability. It is shown how this can be used to improve reliability predictions in a completely general way by a process of recalibration. Simulation results show that the technique gives improved reliability predictions in a large proportion of cases. However, a user does not need to trust the efficacy of recalibration, since the new reliability estimates produced by the technique are truly predictive and so their accuracy in a particular application can be judged using the earlier methods. The generality of this approach would therefore suggest that it be applied as a matter of course whenever a software reliability model is used.

  6. Software Reliability 2002

    NASA Technical Reports Server (NTRS)

    Wallace, Dolores R.

    2003-01-01

    In FY01 we learned that hardware reliability models need substantial changes to account for differences in software, thus making software reliability measurements more effective, accurate, and easier to apply. These reliability models are generally based on familiar distributions or parametric methods. An obvious question is 'What new statistical and probability models can be developed using non-parametric and distribution-free methods instead of the traditional parametric method?" Two approaches to software reliability engineering appear somewhat promising. The first study, begin in FY01, is based in hardware reliability, a very well established science that has many aspects that can be applied to software. This research effort has investigated mathematical aspects of hardware reliability and has identified those applicable to software. Currently the research effort is applying and testing these approaches to software reliability measurement, These parametric models require much project data that may be difficult to apply and interpret. Projects at GSFC are often complex in both technology and schedules. Assessing and estimating reliability of the final system is extremely difficult when various subsystems are tested and completed long before others. Parametric and distribution free techniques may offer a new and accurate way of modeling failure time and other project data to provide earlier and more accurate estimates of system reliability.

  7. Recalibrating software reliability models

    NASA Technical Reports Server (NTRS)

    Brocklehurst, Sarah; Chan, P. Y.; Littlewood, Bev; Snell, John

    1990-01-01

    In spite of much research effort, there is no universally applicable software reliability growth model which can be trusted to give accurate predictions of reliability in all circumstances. Further, it is not even possible to decide a priori which of the many models is most suitable in a particular context. In an attempt to resolve this problem, techniques were developed whereby, for each program, the accuracy of various models can be analyzed. A user is thus enabled to select that model which is giving the most accurate reliability predicitons for the particular program under examination. One of these ways of analyzing predictive accuracy, called the u-plot, in fact allows a user to estimate the relationship between the predicted reliability and the true reliability. It is shown how this can be used to improve reliability predictions in a completely general way by a process of recalibration. Simulation results show that the technique gives improved reliability predictions in a large proportion of cases. However, a user does not need to trust the efficacy of recalibration, since the new reliability estimates prodcued by the technique are truly predictive and so their accuracy in a particular application can be judged using the earlier methods. The generality of this approach would therefore suggest that it be applied as a matter of course whenever a software reliability model is used.

  8. Reliability of fluid systems

    NASA Astrophysics Data System (ADS)

    Kopáček, Jaroslav; Fojtášek, Kamil; Dvořák, Lukáš

    2016-03-01

    This paper focuses on the importance of detection reliability, especially in complex fluid systems for demanding production technology. The initial criterion for assessing the reliability is the failure of object (element), which is seen as a random variable and their data (values) can be processed using by the mathematical methods of theory probability and statistics. They are defined the basic indicators of reliability and their applications in calculations of serial, parallel and backed-up systems. For illustration, there are calculation examples of indicators of reliability for various elements of the system and for the selected pneumatic circuit.

  9. 'You say treatment, I say hard work': treatment burden among people with chronic illness and their carers in Australia.

    PubMed

    Sav, Adem; Kendall, Elizabeth; McMillan, Sara S; Kelly, Fiona; Whitty, Jennifer A; King, Michelle A; Wheeler, Amanda J

    2013-11-01

    The aim of this study was to explore treatment burden among people with a variety of chronic conditions and comorbidities and their unpaid carers. The burden of living with ongoing chronic illness has been well established. However, the burden associated with proactively treating and managing chronic illness, commonly referred to as 'treatment burden', is less understood. This study helps to bridge this gap in our understanding by providing an in-depth analysis of qualitative data collected from a large sample of adults from diverse backgrounds and with various chronic conditions. Using semi-structured in-depth interviews, data were collected with a large sample of 97 participants that included a high representation of people from culturally and linguistically diverse backgrounds and indigenous populations across four regions of Australia. Interviews were conducted during May-October 2012, either face to face (n = 49) or over the telephone (n = 48) depending on the participant's preference and location. Data were analysed using an iterative thematic approach and the constant comparison method. The findings revealed four interrelated components of treatment burden: financial burden, time and travel burden, medication burden and healthcare access burden. However, financial burden was the most problematic component with the cost of treatment being significant for most people. Financial burden had a detrimental impact on a person's use of medication and also exacerbated other types of burden such as access to healthcare services and the time and travel associated with treatment. The four components of treatment burden operated in a cyclical manner and although treatment burden was objective in some ways (number of medications, and time to access treatment), it was also a subjective experience. Overall, this study underscores the urgent need for healthcare professionals to identify patients overwhelmed by their treatment and develop 'individualised' treatment

  10. The impact of the carer support needs assessment tool (CSNAT) in community palliative care using a stepped wedge cluster trial.

    PubMed

    Aoun, Samar M; Grande, Gunn; Howting, Denise; Deas, Kathleen; Toye, Chris; Troeung, Lakkhina; Stajduhar, Kelli; Ewing, Gail

    2015-01-01

    Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers' needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support

  11. The Impact of the Carer Support Needs Assessment Tool (CSNAT) in Community Palliative Care Using a Stepped Wedge Cluster Trial

    PubMed Central

    Aoun, Samar M.; Grande, Gunn; Howting, Denise; Deas, Kathleen; Toye, Chris; Troeung, Lakkhina; Stajduhar, Kelli; Ewing, Gail

    2015-01-01

    Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers’ needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support

  12. Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies

    PubMed Central

    Bunn, Frances; Goodman, Claire; Sworn, Katie; Rait, Greta; Brayne, Carol; Robinson, Louise; McNeilly, Elaine; Iliffe, Steve

    2012-01-01

    Background Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice. Methods and Findings We systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis. Conclusions There is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that

  13. Hawaii electric system reliability.

    SciTech Connect

    Silva Monroy, Cesar Augusto; Loose, Verne William

    2012-09-01

    This report addresses Hawaii electric system reliability issues; greater emphasis is placed on short-term reliability but resource adequacy is reviewed in reference to electric consumers' views of reliability %E2%80%9Cworth%E2%80%9D and the reserve capacity required to deliver that value. The report begins with a description of the Hawaii electric system to the extent permitted by publicly available data. Electrical engineering literature in the area of electric reliability is researched and briefly reviewed. North American Electric Reliability Corporation standards and measures for generation and transmission are reviewed and identified as to their appropriateness for various portions of the electric grid and for application in Hawaii. Analysis of frequency data supplied by the State of Hawaii Public Utilities Commission is presented together with comparison and contrast of performance of each of the systems for two years, 2010 and 2011. Literature tracing the development of reliability economics is reviewed and referenced. A method is explained for integrating system cost with outage cost to determine the optimal resource adequacy given customers' views of the value contributed by reliable electric supply. The report concludes with findings and recommendations for reliability in the State of Hawaii.

  14. The Use of Descriptive Words and Metaphor in Patient and Carer Experience of Palliative Day Care: Secondary Analysis of a Qualitative Study

    PubMed Central

    Richardson, J; Grose, J

    2009-01-01

    Background: An independent evaluation of changes to the delivery of Palliative Day Services was carried out during 2006-2007 using interviews with service users. The analysis found that the words and metaphors employed by users of services emphasized their emotional response to the changes, and helped to explain their depth of feeling about their experiences, warranting further investigation. Aim: To conduct a secondary analysis on interview data collected for the Day Services Evaluation Study in order to understand how patients and their carers use descriptive words and metaphor when talking about their experiences of palliative day services. Methods: Interview transcripts from 40 patients and 8 carers were subjected to secondary thematic analysis. These were read individually and coded where metaphor or descriptive words had been used to emphasize the effect of the illness and the experiences of the Day Services. Findings: Examples of the metaphorical expressions and words used described the service as a ‘secure rock in a changing world’; transition was felt as ‘sadness’, a ‘betrayal’, with feelings that the changes were ‘bitter and twisted;’ and left ‘a black hole’. Post transition the mood had changed to acceptance ‘When life throws lemons at you, you make lemonade’. Conclusions: The metaphors and descriptive words used act as what we describe as ‘emotional intensifiers’ which provide a measure of the impact of the effect of illness, the effect of the day services on users and carers and the intensity of feeling during the time of transition. PMID:19587796

  15. Reliability and Validity of the Multimedia Activity Recall in Children and Adults (MARCA) in People with Chronic Obstructive Pulmonary Disease

    PubMed Central

    Hunt, Toby; Williams, Marie T.; Olds, Tim S.

    2013-01-01

    Objective To determine the reliability and validity of the Multimedia Activity Recall for Children and Adults (MARCA) in people with chronic obstructive pulmonary disease (COPD). Design People with COPD and their carers completed the Multimedia Activity Recall for Children and Adults (MARCA) for four, 24-hour periods (including test-retest of 2 days) while wearing a triaxial accelerometer (Actigraph GT3X+®), a multi-sensor armband (Sensewear Pro3®) and a pedometer (New Lifestyles 1000®). Setting Self reported activity recalls (MARCA) and objective activity monitoring (Accelerometry) were recorded under free-living conditions. Participants 24 couples were included in the analysis (COPD; age 74.4±7.9 yrs, FEV1 54±13% Carer; age 69.6±10.9 yrs, FEV1 99±24%). Interventions Not applicable. Main Outcome Measure(s) Test-retest reliability was compared for MARCA activity domains and different energy expenditure zones. Validity was assessed between MARCA-derived physical activity level (in metabolic equivalent of task (MET) per minute), duration of moderate to vigorous physical activity (min) and related data from the objective measurement devices. Analysis included intra-class correlation coefficients (ICC), Bland-Altman analyses, paired t-tests (p) and Spearman's rank correlation coefficients (rs). Results Reliability between occasions of recall for all activity domains was uniformly high, with test-retest correlations consistently >0.9. Validity correlations were moderate to strong (rs = 0.43–0.80) across all comparisons. The MARCA yields comparable PAL estimates and slightly higher moderate to vigorous physical activity (MVPA) estimates. Conclusion In older adults with chronic illness, the MARCA is a valid and reliable tool for capturing not only the time and energy expenditure associated with physical and sedentary activities but also information on the types of activities. PMID:24312284

  16. Patient and carer experience of hospital-based rehabilitation from intensive care to hospital discharge: mixed methods process evaluation of the RECOVER randomised clinical trial

    PubMed Central

    Ramsay, Pam; Huby, Guro; Merriweather, Judith; Salisbury, Lisa; Rattray, Janice; Griffith, David; Walsh, Timothy

    2016-01-01

    Objectives To explore and compare patient/carer experiences of rehabilitation in the intervention and usual care arms of the RECOVER trial (ISRCTN09412438); a randomised controlled trial of a complex intervention of post-intensive care unit (ICU) acute hospital-based rehabilitation following critical illness. Design Mixed methods process evaluation including comparison of patients' and carers' experience of usual care versus the complex intervention. We integrated and compared quantitative data from a patient experience questionnaire (PEQ) with qualitative data from focus groups with patients and carers. Setting Two university-affiliated hospitals in Scotland. Participants 240 patients discharged from ICU who required ≥48 hours of mechanical ventilation were randomised into the trial (120 per trial arm). Exclusion criteria comprised: primary neurologic diagnosis, palliative care, current/planned home ventilation and age <18 years. 182 patients completed the PEQ at 3 months postrandomisation. 22 participants (14 patients and 8 carers) took part in focus groups (2 per trial group) at >3 months postrandomisation. Interventions A complex intervention of post-ICU acute hospital rehabilitation, comprising enhanced physiotherapy, nutritional care and information provision, case-managed by dedicated rehabilitation assistants (RAs) working within existing ward-based clinical teams, delivered between ICU discharge and hospital discharge. Comparator was usual care. Outcome measures A novel PEQ capturing patient-reported aspects of quality care. Results The PEQ revealed statistically significant between-group differences across 4 key intervention components: physiotherapy (p=0.039), nutritional care (p=0.038), case management (p=0.045) and information provision (p<0.001), suggesting greater patient satisfaction in the intervention group. Focus group data strongly supported and helped explain these findings. Specifically, case management by dedicated RAs facilitated

  17. Photovoltaic system reliability

    SciTech Connect

    Maish, A.B.; Atcitty, C.; Greenberg, D.

    1997-10-01

    This paper discusses the reliability of several photovoltaic projects including SMUD`s PV Pioneer project, various projects monitored by Ascension Technology, and the Colorado Parks project. System times-to-failure range from 1 to 16 years, and maintenance costs range from 1 to 16 cents per kilowatt-hour. Factors contributing to the reliability of these systems are discussed, and practices are recommended that can be applied to future projects. This paper also discusses the methodology used to collect and analyze PV system reliability data.

  18. Software reliability studies

    NASA Technical Reports Server (NTRS)

    Wilson, Larry W.

    1989-01-01

    The longterm goal of this research is to identify or create a model for use in analyzing the reliability of flight control software. The immediate tasks addressed are the creation of data useful to the study of software reliability and production of results pertinent to software reliability through the analysis of existing reliability models and data. The completed data creation portion of this research consists of a Generic Checkout System (GCS) design document created in cooperation with NASA and Research Triangle Institute (RTI) experimenters. This will lead to design and code reviews with the resulting product being one of the versions used in the Terminal Descent Experiment being conducted by the Systems Validations Methods Branch (SVMB) of NASA/Langley. An appended paper details an investigation of the Jelinski-Moranda and Geometric models for software reliability. The models were given data from a process that they have correctly simulated and asked to make predictions about the reliability of that process. It was found that either model will usually fail to make good predictions. These problems were attributed to randomness in the data and replication of data was recommended.

  19. Multidisciplinary System Reliability Analysis

    NASA Technical Reports Server (NTRS)

    Mahadevan, Sankaran; Han, Song; Chamis, Christos C. (Technical Monitor)

    2001-01-01

    The objective of this study is to develop a new methodology for estimating the reliability of engineering systems that encompass multiple disciplines. The methodology is formulated in the context of the NESSUS probabilistic structural analysis code, developed under the leadership of NASA Glenn Research Center. The NESSUS code has been successfully applied to the reliability estimation of a variety of structural engineering systems. This study examines whether the features of NESSUS could be used to investigate the reliability of systems in other disciplines such as heat transfer, fluid mechanics, electrical circuits etc., without considerable programming effort specific to each discipline. In this study, the mechanical equivalence between system behavior models in different disciplines are investigated to achieve this objective. A new methodology is presented for the analysis of heat transfer, fluid flow, and electrical circuit problems using the structural analysis routines within NESSUS, by utilizing the equivalence between the computational quantities in different disciplines. This technique is integrated with the fast probability integration and system reliability techniques within the NESSUS code, to successfully compute the system reliability of multidisciplinary systems. Traditional as well as progressive failure analysis methods for system reliability estimation are demonstrated, through a numerical example of a heat exchanger system involving failure modes in structural, heat transfer and fluid flow disciplines.

  20. Acceptability and feasibility of self-help Cognitive Remediation Therapy for anorexia nervosa delivered in collaboration with carers: a qualitative preliminary evaluation study.

    PubMed

    Lang, Katie; Treasure, Janet; Tchanturia, Kate

    2015-02-28

    Anorexia nervosa (AN) is an eating disorder without a recommended first-line treatment. Cognitive Remediation Therapy (CRT) is showing great promise in helping patients reduce cognitive inflexibility and excessive detail focus, thinking styles that could make engaging in psychological therapies difficult. CRT has shown to be effective, feasible and acceptable in both individual and group formats, and positive qualitative data has been gathered from both service users and clinicians. The aim of the current study was to assess the use of CRT as a self-help treatment for individuals with AN delivered in collaboration with carers. Six families underwent a six-week self-help CRT intervention. Feedback was gathered from qualitative interviews and analysed using thematic analysis. Neuropsychological outcomes were also collected. Participant feedback regarding the intervention was generally positive, with participants describing a number of benefits such as it creating a space for families to spend time together outside of the eating disorder, acting as a 'gateway' for more emotional work and helping participants to gain insight into their cognitive profiles. These preliminary findings suggest that self-help CRT delivered in collaboration with carers is an acceptable form of treatment, and adds to the growing literature supporting CRT for AN. PMID:25555418

  1. Development of a reliable questionnaire to assist in the diagnosis of fetal alcohol spectrum disorders (FASD)

    PubMed Central

    2013-01-01

    Background A battery of clinical assessments was used in the Lililwan* Project, Australia’s first population-based Fetal Alcohol Spectrum Disorders (FASD) prevalence study, conducted in the remote Fitzroy Valley, Western Australia. One objective was to develop and assess test-retest reliability of an acceptable questionnaire for collecting health information in remote Aboriginal communities feasible for use in the Lililwan Project. Methods A questionnaire was developed by paediatricians to assist in diagnosis of FASD. Content was based on a literature review of FASD diagnostic criteria, existing questionnaires and risk factors for FASD and birth defects. Aboriginal community members, including qualified Aboriginal language interpreters, adapted the questionnaire to ensure language and cultural components were appropriate for use in the Fitzroy Valley. Locally developed pictorial aids were used for gathering accurate information on alcohol use. Aboriginal ‘community navigators’ assisted researchers to translate the questions into Kimberley Kriol or local Aboriginal languages depending on participant preference. A subset of 14 questions was assessed for test-retest reliability in 30 parents/carers of children in the Lililwan Project cohort, who were interviewed by one rater using the entire questionnaire, then by a second rater who repeated 14 critical questions at least 6 hours later. Results The full questionnaire contained 112 items and took 50 minutes to administer. For a subset of 14 items from the full questionnaire percent exact agreement between raters ranged from 59-100%, and was below 70% for only 1 question. Test-retest reliability was excellent (Kappa 0.81-1.00) for 5 items, substantial (Kappa 0.61-0.80) for 5 items, and moderate, fair or slight (Kappa ≤0.60) for the remaining 4 items tested. Test-retest reliability for questions relating to alcohol use in pregnancy was excellent. When questions had moderate, fair or slight agreement

  2. Statistical modelling of software reliability

    NASA Technical Reports Server (NTRS)

    Miller, Douglas R.

    1991-01-01

    During the six-month period from 1 April 1991 to 30 September 1991 the following research papers in statistical modeling of software reliability appeared: (1) A Nonparametric Software Reliability Growth Model; (2) On the Use and the Performance of Software Reliability Growth Models; (3) Research and Development Issues in Software Reliability Engineering; (4) Special Issues on Software; and (5) Software Reliability and Safety.

  3. Orbiter Autoland reliability analysis

    NASA Technical Reports Server (NTRS)

    Welch, D. Phillip

    1993-01-01

    The Space Shuttle Orbiter is the only space reentry vehicle in which the crew is seated upright. This position presents some physiological effects requiring countermeasures to prevent a crewmember from becoming incapacitated. This also introduces a potential need for automated vehicle landing capability. Autoland is a primary procedure that was identified as a requirement for landing following and extended duration orbiter mission. This report documents the results of the reliability analysis performed on the hardware required for an automated landing. A reliability block diagram was used to evaluate system reliability. The analysis considers the manual and automated landing modes currently available on the Orbiter. (Autoland is presently a backup system only.) Results of this study indicate a +/- 36 percent probability of successfully extending a nominal mission to 30 days. Enough variations were evaluated to verify that the reliability could be altered with missions planning and procedures. If the crew is modeled as being fully capable after 30 days, the probability of a successful manual landing is comparable to that of Autoland because much of the hardware is used for both manual and automated landing modes. The analysis indicates that the reliability for the manual mode is limited by the hardware and depends greatly on crew capability. Crew capability for a successful landing after 30 days has not been determined yet.

  4. Photovoltaic module reliability workshop

    NASA Astrophysics Data System (ADS)

    Mrig, L.

    The paper and presentations compiled in this volume form the Proceedings of the fourth in a series of Workshops sponsored by Solar Energy Research Institute (SERI/DOE) under the general theme of photovoltaic module reliability during the period 1986 to 1990. The reliability photovoltaic (PV) modules/systems is exceedingly important along with the initial cost and efficiency of modules if the PV technology has to make a major impact in the power generation market, and for it to compete with the conventional electricity producing technologies. The reliability of photovoltaic modules has progressed significantly in the last few years as evidenced by warrantees available on commercial modules of as long as 12 years. However, there is still need for substantial research and testing required to improve module field reliability to levels of 30 years or more. Several small groups of researchers are involved in this research, development, and monitoring activity around the world. In the U.S., PV manufacturers, DOE laboratories, electric utilities and others are engaged in the photovoltaic reliability research and testing. This group of researchers and others interested in this field were brought together under SERI/DOE sponsorship to exchange the technical knowledge and field experience as related to current information in this important field. The papers presented here reflect this effort.

  5. Photovoltaic module reliability workshop

    SciTech Connect

    Mrig, L.

    1990-01-01

    The paper and presentations compiled in this volume form the Proceedings of the fourth in a series of Workshops sponsored by Solar Energy Research Institute (SERI/DOE) under the general theme of photovoltaic module reliability during the period 1986--1990. The reliability Photo Voltaic (PV) modules/systems is exceedingly important along with the initial cost and efficiency of modules if the PV technology has to make a major impact in the power generation market, and for it to compete with the conventional electricity producing technologies. The reliability of photovoltaic modules has progressed significantly in the last few years as evidenced by warranties available on commercial modules of as long as 12 years. However, there is still need for substantial research and testing required to improve module field reliability to levels of 30 years or more. Several small groups of researchers are involved in this research, development, and monitoring activity around the world. In the US, PV manufacturers, DOE laboratories, electric utilities and others are engaged in the photovoltaic reliability research and testing. This group of researchers and others interested in this field were brought together under SERI/DOE sponsorship to exchange the technical knowledge and field experience as related to current information in this important field. The papers presented here reflect this effort.

  6. Proposed reliability cost model

    NASA Technical Reports Server (NTRS)

    Delionback, L. M.

    1973-01-01

    The research investigations which were involved in the study include: cost analysis/allocation, reliability and product assurance, forecasting methodology, systems analysis, and model-building. This is a classic example of an interdisciplinary problem, since the model-building requirements include the need for understanding and communication between technical disciplines on one hand, and the financial/accounting skill categories on the other. The systems approach is utilized within this context to establish a clearer and more objective relationship between reliability assurance and the subcategories (or subelements) that provide, or reenforce, the reliability assurance for a system. Subcategories are further subdivided as illustrated by a tree diagram. The reliability assurance elements can be seen to be potential alternative strategies, or approaches, depending on the specific goals/objectives of the trade studies. The scope was limited to the establishment of a proposed reliability cost-model format. The model format/approach is dependent upon the use of a series of subsystem-oriented CER's and sometimes possible CTR's, in devising a suitable cost-effective policy.

  7. Software reliability perspectives

    NASA Technical Reports Server (NTRS)

    Wilson, Larry; Shen, Wenhui

    1987-01-01

    Software which is used in life critical functions must be known to be highly reliable before installation. This requires a strong testing program to estimate the reliability, since neither formal methods, software engineering nor fault tolerant methods can guarantee perfection. Prior to the final testing software goes through a debugging period and many models have been developed to try to estimate reliability from the debugging data. However, the existing models are poorly validated and often give poor performance. This paper emphasizes the fact that part of their failures can be attributed to the random nature of the debugging data given to these models as input, and it poses the problem of correcting this defect as an area of future research.

  8. Reliability Centered Maintenance - Methodologies

    NASA Technical Reports Server (NTRS)

    Kammerer, Catherine C.

    2009-01-01

    Journal article about Reliability Centered Maintenance (RCM) methodologies used by United Space Alliance, LLC (USA) in support of the Space Shuttle Program at Kennedy Space Center. The USA Reliability Centered Maintenance program differs from traditional RCM programs because various methodologies are utilized to take advantage of their respective strengths for each application. Based on operational experience, USA has customized the traditional RCM methodology into a streamlined lean logic path and has implemented the use of statistical tools to drive the process. USA RCM has integrated many of the L6S tools into both RCM methodologies. The tools utilized in the Measure, Analyze, and Improve phases of a Lean Six Sigma project lend themselves to application in the RCM process. All USA RCM methodologies meet the requirements defined in SAE JA 1011, Evaluation Criteria for Reliability-Centered Maintenance (RCM) Processes. The proposed article explores these methodologies.

  9. Gearbox Reliability Collaborative Update (Presentation)

    SciTech Connect

    Sheng, S.

    2013-10-01

    This presentation was given at the Sandia Reliability Workshop in August 2013 and provides information on current statistics, a status update, next steps, and other reliability research and development activities related to the Gearbox Reliability Collaborative.

  10. Materials reliability issues in microelectronics

    SciTech Connect

    Lloyd, J.R. ); Yost, F.G. ); Ho, P.S. )

    1991-01-01

    This book covers the proceedings of a MRS symposium on materials reliability in microelectronics. Topics include: electromigration; stress effects on reliability; stress and packaging; metallization; device, oxide and dielectric reliability; new investigative techniques; and corrosion.