Psychosocial, educational and communicative interventions for patients with cachexia and their family carers

PubMed Central

Reid, Joanne

2014-01-01

Purpose of review Cancer cachexia has a substantial impact on both patients and their family carers. It has been acknowledged as one of the two most frequent and devastating problems of advanced cancer. The impact of cachexia spans biopsychosocial realms. Symptom management in cachexia is fraught with difficulties and globally, there remains no agreed standard care or treatment for this client group. There is a need to address the psychosocial impact of cachexia for both patients and their family carers. Recent findings Patients living at home and their family carers are often left to manage the distressing psychosocial impacts of cancer cachexia themselves. Successful symptom management requires healthcare professionals to address the holistic impact of cancer cachexia. High quality and rigorous research details the existential impact of cachexia on patients and their family carers. This information needs to inform psychosocial, educational and communicative supportive healthcare interventions to help both patients and their family carers better cope with the effects of cachexia. Summary Supportive interventions need to inform both patients and their family carers of the expected impacts of cachexia, and address how to cope with them to retain a functional, supported family unit who are informed about and equipped to care for a loved one with cachexia. PMID:25144837

Improving family carers' experiences of support at the end of life by enhancing communication: an action research study.

PubMed

Dosser, Isabel; Kennedy, Catriona

2014-12-01

This paper builds on findings from phase one of a participatory action research study, which investigated support for family carers at the end of life in an acute hospital setting in Scotland, UK ( Dosser and Kennedy, 2012 ). The research presented here is the second phase of the participatory action research study, in which nursing staff from an acute hospital ward are involved in ongoing analysis of data and ideas guided by action cycles and reflection. Two key change initiatives are reported; improving nurses' communication skills and improving the environment for family carers of loved ones at the end of life within the acute hospital setting. To address these points, nurses were enrolled on a communications skills course, and a new room for family carers was integrated into the hospital. Data were analysed from interviews and questionnaires with the nurses, and from insights gathered in a reflective diary taken by the researcher. The changes implemented improved the confidence of participants in communicating with carers as well as patients and colleagues. The findings highlight practical strategies and communication issues that can potentially impact on the grief experience of family carers, such as having a safe space nearby to rest in private, away from the bedside.

Care home design for people with dementia: What do people with dementia and their family carers value?

PubMed

Innes, Anthea; Kelly, Fiona; Dincarslan, Ozlem

2011-07-01

To report on the views of people with dementia who live in care homes and their family carers on aspects of design that are important to them, and discuss these in relation to developing physical care environments that respond to the wishes of people with dementia and their family carers. Six focus groups were held: two in Northern Ireland and four in Scotland. A total of 40 people participated in the focus groups. Twenty nine people were with dementia (24 female and five male), and 11 were family carers (10 female and one male). Carers discussed the features of a building they took into account when selecting a care home, and discussed this in relation to 'bricks and mortar versus people'. Key themes reported by people with dementia and their family carers included how the space in the environment is used, for example, what happens in the building and the presence or absence of certain design features. Outside space and wayfinding aids were identified as positive features of the home, along with a general lack of concern about ensuite provision. The results demonstrate the complexity of building design as it must provide living space acceptable to people with dementia living there and family members who visit, as well as provide a workable environment for staff. The findings highlight areas that should be considered by care home teams involved in the build of a new home or the redevelopment of an existing care home.

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

PubMed

Bentley, Brenda; O'Connor, Moira; Breen, Lauren J; Kane, Robert

2014-03-19

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

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

PubMed

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

2013-01-01

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

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

PubMed Central

2014-01-01

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

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

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

PubMed

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

2016-05-01

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. To understand why some family carers have difficulty in dealing with BPSD, in order to improve the quality of personalised care that is offered. A systematic review and meta-ethnographic synthesis was conducted of high-quality quantitative and qualitative studies between 1980 and 2012. 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. 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. © The Royal College of Psychiatrists 2016.

Awareness of dementia by family carers of nursing home residents dying with dementia: a post-death study.

PubMed

Penders, Yolanda W H; Albers, Gwenda; Deliens, Luc; Vander Stichele, Robert; Van den Block, Lieve

2015-01-01

High-quality palliative care for people with dementia should be patient-centered, family-focused, and include well-informed and shared decision-making, as affirmed in a recent white paper on dementia from the European Association for Palliative Care. To describe how often family carers of nursing home residents who died with dementia are aware that their relative has dementia, and study resident, family carer, and care characteristics associated with awareness. Post-death study using random cluster sampling. Structured questionnaires were completed by family carers, nursing staff, and general practitioners of deceased nursing home residents with dementia in Flanders, Belgium (2010). Of 190 residents who died with dementia, 53.2% of family carers responded. In 28% of cases, family carers indicated they were unaware their relative had dementia. Awareness by family carers was related to more advanced stages of dementia 1 month before death (odds ratio = 5.4), with 48% of family carers being unaware when dementia was mild and 20% unaware when dementia was advanced. The longer the onset of dementia after admission to a nursing home, the less likely family carers were aware (odds ratio = 0.94). Family carers are often unaware that their relative has dementia, that is, in one-fourth of cases of dementia and one-fifth of advanced dementia, posing considerable challenges for optimal care provision and end-of-life decision-making. Considering that family carers of residents who develop dementia later after admission to a nursing home are less likely to be aware, there is room for improving communication strategies toward family carers of nursing home residents. © The Author(s) 2014.

Development of the Carers' Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study.

PubMed

Knighting, Katherine; O'Brien, Mary R; Roe, Brenda; Gandy, Rob; Lloyd-Williams, Mari; Nolan, Mike; Jack, Barbara A

2015-05-03

There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. The early identification of carer needs and appropriate intervention can help avoid crisis situations for the carer and avoidable hospital admissions which are reported to be a global concern. The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff. A mixed-method, multi-phased, consensus study sequentially utilising qualitative and quantitative data to develop and pilot the Carers' Alert Thermometer (CAT). 245 people (117 carers and 128 professionals) participated in the study across a range of health and social care settings in the North West of England (2011-2014). A number of key domains were identified and prioritised by consensus for inclusion in the CAT. The 8 domains fit within two overarching themes of the reported carer experience; the support needed by the carer to provide care and the support needed for the carer's own health and well-being. The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer. Preliminary piloting of the CAT has shown it to be valued, fit for purpose and it can be administered by a range of personnel. The CAT enables the identification of current and potential future needs so a proactive approach can be taken to supporting the carer as their role develops over time, with a view to enhancing their well-being and preventing avoidable hospital admissions; ultimately supporting patient choice to remain in their own home.

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

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

PubMed

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

2016-02-01

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

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

PubMed

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

2015-06-01

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. 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. 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. 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. 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. 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. © The Author(s) 2015.

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

PubMed

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

2017-08-21

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

Supporting change in chronic disease risk behaviours for people with a mental illness: a qualitative study of the experiences of family carers.

PubMed

Bailey, Jacqueline M; Hansen, Vibeke; Wye, Paula M; Wiggers, John H; Bartlem, Kate M; Bowman, Jennifer A

2018-03-27

People with a mental illness experience greater chronic disease morbidity and mortality, and associated reduced life expectancy, compared to those without such an illness. A higher prevalence of chronic disease risk behaviours (inadequate nutrition, inadequate physical activity, tobacco smoking, and harmful alcohol consumption) is experienced by this population. Family carers have the potential to support change in such behaviours among those they care for with a mental illness. This study aimed to explore family carers': 1) experiences in addressing the chronic disease risk behaviours of their family members; 2) existing barriers to addressing such behaviours; and 3) perceptions of potential strategies to assist them to provide risk behaviour change support. A qualitative study of four focus groups (n = 31), using a semi-structured interview schedule, was conducted with carers of people with a mental illness in New South Wales, Australia from January 2015 to February 2016. An inductive thematic analysis was employed to explore the experience of carers in addressing the chronic disease risk behaviours. Two main themes were identified in family carers' report of their experiences: firstly, that health behaviours were salient concerns for carers and that they were engaged in providing support, and secondly that they perceived a bidirectional relationship between health behaviours and mental well-being. Key barriers to addressing behaviours were: a need to attend to carers' own well-being; defensiveness on behalf of the family member; and not residing with their family member; with other behaviour-specific barriers also identified. Discussion around strategies which would assist carers in providing support for health risk behaviours identified a need for improved communication and collaboration between carers and health services accessed by their family members. Additional support from general and mental health services accessed by family members is desired to

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.

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

PubMed

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

2017-03-29

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

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

PubMed

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

2017-06-01

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

Core elements to understand and improve coping with Parkinson's disease in patients and family carers: A focus group study.

PubMed

Navarta-Sánchez, M Victoria; Caparrós, Neus; Riverol Fernández, Mario; Díaz De Cerio Ayesa, Sara; Ursúa Sesma, M Eugenia; Portillo, Mari Carmen

2017-11-01

The aim of this study were: (1) To explore the meaning that coping with Parkinson's disease has for patients and family carers; (2) To suggest the components of an intervention focused on enhancing their coping with the disease. Adapting to Parkinson's disease involves going through many difficult changes; however, it may improve quality of life in patients and family carers. One of the key aspects for facilitating the psychosocial adjustment to Parkinson's disease is the strengthening of coping skills. A sequential explanatory mixed methods study was carried out. Findings from the qualitative phase are presented. Data were collected in May 2014 through three focus groups: one of people with Parkinson's disease (n = 9), one of family carers (n = 7) and one of healthcare professionals (n = 5). All focus groups were digitally recorded and transcribed verbatim and content analysis was independently carried out by two researchers. The participants coincided in highlighting that coping with Parkinson's disease helped the patient and the family carer in their search for balance; and it implied a transformation in their lives. To aid the process of coping with Parkinson's disease, a multifaceted intervention is proposed. Coping with Parkinson's disease is a complex process for both patients and family carers and it should therefore be considered a standard service in healthcare policies aimed at this group. The proposed intervention constitutes a nursing tool which has great potential to improve the quality of life in Parkinson's disease and in other long-term conditions. © 2017 John Wiley & Sons Ltd.

Factors associated with the quality of life of family carers of people with dementia: A systematic review.

PubMed

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

2017-05-01

Family carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia. Searches on terms including "carers," "dementia," "family," and "quality of life" in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes. A total of 909 abstracts were identified. Following screening, lateral searches, and quality appraisal, 41 studies (n = 5539) were included for synthesis. A total of 10 themes were identified: demographics; carer-patient relationship; dementia characteristics; demands of caring; carer health; carer emotional well-being; support received; carer independence; carer self-efficacy; and future. The quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it. Copyright © 2017 The Authors. Published by Elsevier Inc. All rights reserved.

[What role for the family carers of elderly people losing their autonomy?].

PubMed

Le Bihan, Blanche; Campéon, Arnaud

2016-03-01

The qualitative analysis of the role of family carers shows that supporting a family member losing their autonomy not only involves providing physical assistance and care but also, increasingly, adopting a role of coordinator. These activities can be a source of stress or they can be rewarding, depending on the shared history of the carer-patient relationship. Copyright © 2016 Elsevier Masson SAS. All rights reserved.

Experiences of family carers of older people with mental health problems in the acute general hospital: a qualitative study.

PubMed

Clissett, Philip; Porock, Davina; Harwood, Rowan H; Gladman, John R F

2013-12-01

To explore the experiences of family carers of people with cognitive impairment during admission to hospital. Providing appropriate care in acute hospitals for people with co-morbid cognitive impairment, especially dementia or delirium or both, is challenging to healthcare professionals. One key element is close working with family members. Qualitative interview study. Semi-structured interviews with family carers of 34 older people who had been admitted to a UK general hospital and had co-morbid cognitive impairment. Interviews conducted in 2009 and 2010. Analysis was undertaken using Strauss and Corbin's framework. The findings elaborate a core problem, 'disruption from normal routine' and a core process, 'gaining or giving a sense of control to cope with disruption'. Family carers responded to disruption proactively by trying to make sense of the situation and attempting to gain control for themselves or the patient. They tried to stay informed, communicate with staff about the patient and plan for the future. The interaction of the core problem and the core process resulted in outcomes where family members either valued the support of hospital staff and services or were highly critical of the care provided. Family carers are not passive in the face of the disruption of hospitalization and respond both by trying to involve themselves in the care and support of their relative and by trying to work in partnership with members of staff. Nurses need to foster this relationship conscientiously. © 2013 John Wiley & Sons Ltd.

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

PubMed

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

2017-01-01

Personal budgets aim to increase choice and independence for people with social care needs but they remain underused by people with mental health problems compared to other disability groups. The use of personal budgets may impact on families in a variety of ways, both positive and negative. This paper draws on interviews, undertaken in 2012-2013 with 18 family carers and 12 mental health service users, that explored experiences of family involvement in accessing and managing personal budgets for a person with mental health-related social care needs. The sample was drawn from three sites across England, with additional carers being recruited via voluntary sector networks. Our findings show that for many people with severe mental health needs who lack motivation and confidence to negotiate access to personal budgets, carers may provide the necessary support to enable them to benefit from this form of social care support. We illustrate the role carers may play in initiating, pursuing and maximising the level of support available through personal budgets. However, some carers interviewed considered that personal budget funding was reduced because of practitioners' assumptions about carers' willingness and ability to provide support. We also report perceived tensions between family carers and practitioners around appropriate involvement in decision-making. The study findings have implications for local authorities, practitioners and family carers in supporting the involvement of family carers in support for people with severe mental health problems. © 2015 John Wiley & Sons Ltd.

"How Families Live …"-- The Views and Experiences of Parent-Carers Who Provide Family Placements to Intellectual Disability Nursing Students

ERIC Educational Resources Information Center

McClimens, Alex; Finlayson, Janet; Darbyshire, Chris

2017-01-01

Aim: We aimed to learn about the value of family placements from the perspective of parent-carers who provide them to nurse students via a Scottish university Family Placement Scheme. Method: Qualitative interviews were conducted with seven parent-carers who provided a family placement over two academic years. Descriptive data was analysed,…

Resilience for family carers of advanced cancer patients-how can health care providers contribute? A qualitative interview study with carers.

PubMed

Røen, Ingebrigt; Stifoss-Hanssen, Hans; Grande, Gunn; Brenne, Anne-Tove; Kaasa, Stein; Sand, Kari; Knudsen, Anne Kari

2018-05-01

Caring for advanced cancer patients affects carers' psychological and physical health. Resilience has been defined as "the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat." The aim of this study was to explore factors promoting carer resilience, based on carers' experiences with and preferences for health care provider support. Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Carers ( n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers-a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer-patient relation. Health care providers may enhance carers' resilience by a series of simple interventions. Education should address carers' support needs and resilience. Systematic assessment of carers' support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.

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

PubMed Central

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

2017-01-01

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

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

PubMed

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

2018-03-01

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

“It’s alright to ask for help”: findings from a qualitative study exploring the information and support needs of family carers at the end of life

PubMed Central

2014-01-01

Background Family carers play an essential role in providing end-of-life care to their relatives but have been found to experience uncertainty and a lack of confidence in fulfilling their caregiving roles, prompting recent calls for educational or information based resources to be developed for carers. Methods We carried out four focus groups with Clinical Nurse Specialists, healthcare assistants, former and current carers at a hospice in the UK, to explore the information and support needs of family carers. Results Our findings support previous research by highlighting a number of care situations where carers experience uncertainty and could seemingly benefit from greater information or instruction. Three main themes were identified which reflected carer experiences and needs in relation to potential information giving or educational interventions. These have been described as the knowledge and competence of carers; the preparedness of carers and low levels of carer identification with, and confidence in their roles as ‘carers’, which influences help seeking behaviours; and in turn how potential supportive interventions might be received by carers. Conclusions Family carers experience multiple needs for information and education, but meeting these needs remains a challenge. Our results suggest three domains which could underpin this type of intervention: developing knowledge and competence; facilitating preparedness; supporting role recognition and confidence building. We recommend an integrated information giving approach which addresses these domains by combining a resource pack for carers with a more explicit acknowledging role for health professionals. Together these could provide key information and also build confidence amongst family carers to ask for further support and advice as needed. PMID:24742046

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…

Gaining consensus on family carer needs when caring for someone dying at home to develop the Carers' Alert Thermometer (CAT): a modified Delphi study.

PubMed

Knighting, Katherine; O'Brien, Mary R; Roe, Brenda; Gandy, Rob; Lloyd-Williams, Mari; Nolan, Mike; Jack, Barbara A

2016-01-01

To report a multi-phase modified Delphi study conducted with carers and professionals to identify the priority areas for inclusion in an alert screening tool for carers providing support to someone dying at home. Internationally, there is a growing emphasis on increasing choice for patients who wish to die at home which relies heavily on care provided by the unpaid family carers. Family carers can have high levels of unmet needs comprising their psychological and physical health and their ability to provide effective care and support. Development of an alert tool to identify carers' needs in everyday practice required identification and consensus of the priority areas of need for inclusion. Multi-phase modified Delphi study and instrument development. Qualitative and quantitative data collection took place between 2011-2013 with 111 carers and 93 professionals to identify carers' needs and gain consensus on the priority areas for inclusion in the alert tool. An expert panel stage and final evidence review post-Delphi were used. The Delphi panels had high levels of agreement and consensus. Ten areas of carer need across two themes of 'the current caring situation' and 'the carer's own health and well-being' were prioritized for inclusion in the alert tool. An optional end-of-life planning question was included following the final stages. The results provide evidence of carers' needs to be assessed, areas for consideration in the education of those who support carers and someone dying at home and targeting of services, while demonstrating the usefulness and adaptability of the Delphi method. © 2015 The Authors. Journal of Advanced Nursing Published by John Wiley & Sons Ltd.

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

PubMed

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

2016-06-15

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

Residential respite care is associated with family carers experiencing financial strain.

PubMed

Aggar, Christina; Ronaldson, Susan; Cameron, Ian D

2014-06-01

Care services for older people are provided with the expectation of supporting carers in their caregiving role. The aim of the study is to investigate the association between the utilisation of care services by older people and the caregiving experience. Cross-sectional design, involving a cohort of family carers (n = 119) of frail older people (≥70 years) enrolled in a clinical trial of frailty treatment in metropolitan Sydney from 2008 to 2011. The caregiving experience was measured in five domains: health, daily schedule, finance, family support and self-esteem (Caregiver Reaction Assessment tool). Multivariate regression analysis demonstrated an association between the utilisation of residential respite care and financial strain (β = -0.613, P = 0.049), after controlling for functional ability, co-residence and age. There is a need to consider carers' financial barriers and concerns in regards to the utilisation of respite care services. © 2012 The Authors. Australasian Journal on Ageing © 2012 ACOTA.

Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT).

PubMed

Blusi, Madeleine; Asplund, Kenneth; Jong, Mats

2013-09-01

The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion . The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.

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. © The Author(s) 2013.

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

PubMed

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

2012-09-01

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

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…

Family carers' perspectives on post-school transition of young people with intellectual disabilities with special reference to ethnicity.

PubMed

Raghavan, R; Pawson, N; Small, N

2013-10-01

School leavers with intellectual disabilities (ID) often face difficulties in making a smooth transition from school to college, employment or more broadly to adult life. The transition phase is traumatic for the young person with ID and their families as it often results in the loss of friendships, relationships and social networks. The aim of this study was to explore the family carers' views and experiences on transition from school to college or to adult life with special reference to ethnicity. Forty-three families (consisting of 16 White British, 24 Pakistani, 2 Bangladeshi and one Black African) were interviewed twice using a semi-structured interview schedule. The carers were interviewed twice, Time 1 (T1) and Time 2 (T2), T2 being a year later to observe any changes during transition. The findings indicate that although transition planning occurred it was relatively later in the young person's school life. Parents were often confused about the process and had limited information about future options for their son or daughter. All family carers regardless of ethnicity, reported lack of information about services and expressed a sense of being excluded. South Asian families experienced more problems related to language, information about services, culture and religion. The majority of families lacked knowledge and awareness of formal services and the transition process. Socio-economic status, high levels of unemployment and caring for a child with a disability accounted for similar family experiences, regardless of ethnic background. The three key areas relevant for ethnicity are interdependence, religion and assumptions by service providers. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 John Wiley & Sons Ltd, MENCAP & IASSID.

The 'wayfinding' experience of family carers who learn to manage technical health procedures at home: a grounded theory study.

PubMed

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

2017-12-01

With more care taking place in the home, family carers play an important role in supporting patients. Some family carers undertake technical health procedures generally managed by health professionals in hospital settings (e.g. managing a tracheostomy or enteral feeding). To explore how family carers learn to manage technical health procedures in order to help health professionals better understand and support this process. A grounded theory study using data from interviews with 26 New Zealand family carers who managed technical health procedures including nasogastric or gastrostomy feeding, stoma care, urinary catheterisation, tracheostomy management, intravenous therapy, diabetes management and complex wound dressings. Most (20 participants) were caring for their child and the remaining six for their spouse, parent or grandparent. Following grounded theory methods, each interview was coded soon after completion. Additional data were compared with existing material, and as analysis proceeded, initial codes were grouped into higher order concepts until a core concept was developed. Interviewing continued until no new ideas emerged and concepts were well defined. The core concept of 'wayfinding' indicates that the learning process for family carers is active, individualised and multi-influenced, developing over time as a response to lived experience. Health professional support was concentrated on the initial phase of carers' training, reducing and becoming more reactive as carers took responsibility for day-to-day management. Wayfinding involves self-navigation by carers, in contrast to patient navigator models which provide continuing professional assistance to patients receiving cancer or chronic care services. Wayfinding by carers raises questions about how carers should be best supported in their initial and ongoing learning as the management of these procedures changes over time. © 2017 Nordic College of Caring Science.

Family carers' experience of caring for an older parent with severe and persistent mental illness.

PubMed

McCann, Terence V; Bamberg, John; McCann, Flora

2015-06-01

While the burden of caring for older people with chronic medical illness and dementia has been well documented, considerably less is known about how carers develop the strength and resilience to sustain this important role with older family members with mental illness. The aim of the study was to understand the lived experience of primary caregivers of older people with severe and persistent mental illness, and to explore what, if anything, helps to sustain them in their caring role. An interpretative phenomenological analysis approach was adopted, and qualitative interviews were used with 30 primary caregivers. Two overarching themes, and related subthemes, were abstracted from the data. First, caring is a difficult and demanding responsibility. It affects carers adversely, emotionally, physically, socially, and financially, and their lifestyle in general. This is reflected in three subthemes: (i) physically and emotionally draining; (ii) grieving about the loss; (iii) and adverse effects on lifestyle and social relationships. Second, carers develop resilience in caring, which helps sustain them in their role, as illustrated in three subthemes: (i) caring as purposeful and satisfying; (ii) harnessing social support from others; and (iii) purposefully maintaining their own well-being. Community mental health nurses have a key role in assessing carers' needs and supporting them in their caring role. © 2015 Australian College of Mental Health Nurses Inc.

[Psychosocial strategies to strengthen the coping with Parkinson's disease: Perspectives from patients, family carers and healthcare professionals].

PubMed

Navarta-Sánchez, María Victoria; Caparrós, Neus; Ursúa Sesma, María Eugenia; Díaz de Cerio Ayesa, Sara; Riverol, Mario; Portillo, Mari Carmen

2017-04-01

To explore the main psychosocial aspects which have influence on the coping with the disease in patients with Parkinson's disease (PD) and their family carers. An exploratory qualitative study which constitutes the second phase of a mixed-methods project. Multicenter study carried out in Navarre in 2014 in collaboration with Primary Care of Navarre Service of Health-Osasunbidea, Clínica Universidad de Navarra and Navarre Association of Parkinson's patients. A total of 21 participants: 9 people with PD, 7 family carers and 5 healthcare professionals. Participants were selected through purposive sampling. Focus groups were conducted until a suitable saturation data was achieved. Transcriptions were analysed by 2 researchers through a content analysis. Three aspects that affected how patients and family carers coped with PD were identified: features of the clinical practice; family environment, and disease's acceptance. Taking account of these findings, some strategies which could foster these aspects from primary healthcare are suggested in order to improve the adjustment to the disease in patients and family carers. The healthcare in people with PD should have an integral approach that tackle the symptoms control in patients and also deal with psychosocial aspects that influence on the coping with the disease, in patients and family carers. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

Six key topics informal carers of patients with breathlessness in advanced disease want to learn about and why: MRC phase I study to inform an educational intervention.

PubMed

Farquhar, Morag; Penfold, Clarissa; Benson, John; Lovick, Roberta; Mahadeva, Ravi; Howson, Sophie; Burkin, Julie; Booth, Sara; Gilligan, David; Todd, Christopher; Ewing, Gail

2017-01-01

Breathlessness is a common symptom of advanced disease placing a huge burden on patients, health systems and informal carers (families and friends providing daily help and support). It causes distress and isolation. Carers provide complex personal, practical and emotional support yet often feel ill-prepared to care. They lack knowledge and confidence in their caring role. The need to educate carers and families about breathlessness is established, yet we lack robustly developed carer-targeted educational interventions to meet their needs. We conducted a qualitative interview study with twenty five purposively-sampled patient-carer dyads living with breathlessness in advanced disease (half living with advanced cancer and half with advanced chronic obstructive pulmonary disease (COPD). We sought to identify carers' educational needs (including what they wanted to learn about) and explore differences by diagnostic group in order to inform an educational intervention for carers of patients with breathlessness in advanced disease. There was a strong desire among carers for an educational intervention on breathlessness. Six key topics emerged as salient for them: 1) understanding breathlessness, 2) managing anxiety, panic and breathlessness, 3) managing infections, 4) keeping active, 5) living positively and 6) knowing what to expect in the future. A cross-cutting theme was relationship management: there were tensions within dyads resulting from mismatched expectations related to most topics. Carers felt that knowledge-gains would not only help them to support the patient better, but also help them to manage their own frustrations, anxieties, and quality of life. Different drivers for education need were identified by diagnostic group, possibly related to differences in caring role duration and resulting impacts. Meeting the educational needs of carers requires robustly developed and evaluated interventions. This study provides the evidence-base for the content of an

The role of health care assistants in supporting district nurses and family carers to deliver palliative care at home: findings from an evaluation project.

PubMed

Ingleton, Christine; Chatwin, John; Seymour, Jane; Payne, Sheila

2011-07-01

To examine the role of trained health and personal care assistants in supporting district nurses and family carers in providing palliative and end of life care in the community. In the UK, there is a policy directive to improve end of life care and to enable greater numbers of people to die at home. This places considerable demands on community nursing services and family carers. In response to this, the Complex and Palliative Continuing Care Service employing generic health and personal care assistants was developed as part of the Marie Curie Delivering Choice Programme in one city in the UK. This paper draws on findings from an independent evaluation of the scheme. The wider evaluation used a formative evaluation methodology. This paper draws on in-depth interviews with a range of stakeholders (n = 17), in-depth interviews with bereaved carers (n = 6) and an analysis of documentation. Stakeholders and bereaved carers perceived that the health and personal care assistants made a vital contribution to community palliative care. Careful recruitment, specific training, case management by district nursing with allocation of specific tasks and close ongoing communication were key features which stakeholders indentified. Family carers welcomed the way assistants developed relationships and became familiar and able to meet the care needs of patients. There were some problems reported which related to capacity, work flow and the need for extensive written care plans. Employing health care assistants under the supervision of district nurses appears to support patients and family at home during end of life care and contribute to good quality nursing care. The needs for community-based palliative and end of life care will increase rapidly over the course of the next 20 years, placing pressure on community nursing services and family carers. © 2011 Blackwell Publishing Ltd.

Great expectations: a systematic review of the literature on the role of family carers in severe mental illness, and their relationships and engagement with professionals.

PubMed

Rowe, J

2012-02-01

As community care has become embedded in the U.K. as in much of the western world more responsibility for psychosocial care has been placed on family carers. A systematic review of the literature about the role of family carers supporting a relative with severe mental illness and their relationships and engagement with professionals was carried out. The review aimed to find out what professionals expected of family carers and what family carers expected of themselves. Themes were identified: the distinct and personal nature of family caring, potentially effective family caring, barriers to effective caring and ways to overcome barriers. There were expectations that family carers were obligated to help support effective care, but that the rights to enable carers to fulfil these obligations were not consistently upheld. Barriers to upholding rights include: types of service provision, professional attitudes to communication and engagement with carers, and carer ability to cope. Recommendations for practice included: service provision aimed at including carers, more empathic communication by professionals, and a covenant between mental health services and people who depend on them. The idea of a covenant requires more discussion and research is needed into what is expected of family carers. © 2011 Blackwell Publishing.

The experiences of working carers of older people regarding access to a web-based family care support network offered by a municipality.

PubMed

Andersson, Stefan; Erlingsson, Christen; Magnusson, Lennart; Hanson, Elizabeth

2017-09-01

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs. © 2016 Nordic College

Using Google Adwords to recruit family carers of people with dementia.

PubMed

O'Dwyer, Siobhan T; Moyle, Wendy

2014-06-01

Online advertising is a new frontier in research recruitment and Google Adwords (GA) is one method of online advertising. Only a handful of studies, however, have described its cost and effectiveness and none have focused on older adults. The aim of this paper is to describe a GA campaign used to recruit family carers of people with dementia and provide insight for researchers planning to use GA to recruit other older adults. A GA campaign was used to recruit family carers of people with dementia to a cross-sectional study of wellbeing. The ads were viewed more than 450,000 times in a six-week period, but only 49 surveys were completed, at a cost of $122 per survey. GA has promise, but much remains to be understood about how to maximize its potential in ageing research. Recommendations for the design of future GA campaigns are provided. © 2013 ACOTA.

An evaluation of Well Ways, a family education programme for carers of people with a mental illness.

PubMed

Stephens, Jessica R; Farhall, John; Farnan, Sue; Ratcliff, Kirk M

2011-01-01

Family education programmes aim to improve the well-being of carers of people with a mental illness. We evaluated the effectiveness of one such programme, Well Ways, in reducing negative care-giving consequences. We employed a pre-post design to evaluate the effectiveness of Well Ways in a naturalistic setting using a sample of carers of people with a mental illness. The Involvement Evaluation Questionnaire, a measure of care-giving consequences including worrying, tension, urging and supervision, and incorporating the General Health Questionnaire-12 (GHQ-12), was completed by 459 carers before and after participation in Well Ways. Participants' worrying, tension, urging and distress (GHQ-12) were significantly lower following completion of the programme. These improvements were maintained at 3 and 6 month follow up. Carers of people with a psychotic disorder experienced significantly greater reductions in worrying than did other carers. Females reported significantly greater reductions in tension than did males. Findings indicated support for the effectiveness of the Well Ways programme in reducing negative care-giving consequences for families of people with a mental illness. Given the evidence of poor psychological health and negatively appraised family relationships observed at baseline, these findings highlight the need for programmes such as Well Ways.

Fall concern about older persons shifts to carers as changing health policy focuses on family, home-based care.

PubMed

Ang, Seng Giap Marcus; O'Brien, Anthony Paul; Wilson, Amanda

2018-01-01

With the Singaporean population ageing at an exponential rate, home carers are increasingly becoming essential partners in fall prevention and care delivery for older persons living at home and in the community. Singapore, like other Asian countries, regards the family as the main support structure for the older person, and national policies have been implemented to support this cultural expectation. Family carers experience similar concerns as older persons with regard to fall risk, and identifying and addressing these concerns can potentially lower fall risk and improve fall prevention for older persons. It is timely to remind ourselves - as concern about falls in older persons begins to shift to carers - to incorporate the influence of Asian cultural values and unique family dynamics of outsourcing family caregiving, in the management of older persons' fall risk in the community. Copyright: © Singapore Medical Association.

An emotive subject: insights from social, voluntary and healthcare professionals into the feelings of family carers for people with mental health problems.

PubMed

Gray, Ben; Robinson, Catherine A; Seddon, Diane; Roberts, Angela

2009-03-01

Caring for people with mental health problems can generate a whole range of positive and negative emotions, including fear, disbelief, guilt and chaos as well as a sense of purpose, pride and achievement. This paper explores the emotions of family carers from the perspectives of social, voluntary and healthcare professionals. Sixty-five participants were interviewed, the sample included directors, managers and senior staff from social, voluntary and healthcare organisations. Participants were encouraged to talk in detail about their understanding of the emotions of family carers. Findings highlight a rich understanding of the broad spectrum of carer emotions and the huge emotional adjustments that are often involved. Diagnosis was seen to be imbued with negative emotions, such as fear, anger and denial. However, feelings of hopelessness and desolation were often counterbalanced by feelings of hope, satisfaction and the emotional rewards of caring for a loved one. Participants noted a clear lack of emotional support for family carers, with accompanying feelings of marginalisation, particularly during transitions and especially involving young carers as well as ethnic minorities. By way of contrast, carer support groups were suggested by professionals to be a holistic, effective and economical way of meeting carers' emotional needs. This paper explores the challenge of family carer emotions from the perspective of managers and practitioners and draws out implications for research, policy and practice.

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.

Involving healthcare professionals and family carers in setting research priorities for end-of-life care.

PubMed

Diffin, Janet; Spence, Michael; Spencer, Rebecca; Mellor, Peter; Grande, Gunn

2017-02-02

It is important to ensure regional variances are considered when setting future end-of-life research priorities, given the differing demographics and service provision. This project sought to identify end-of-life research priorities within Greater Manchester (United Kingdom). Following an initial scoping exercise, six topics within the 10 national priorities outlined by The Palliative and end-of-life care Priority Setting Partnership were selected for exploration. A workshop involving 32 healthcare professionals and a consultation process with 26 family carers was conducted. Healthcare professionals and carers selected and discussed the topics important to them. The topics selected most frequently by both healthcare professionals and carers were 'Access to 24 hour care', 'Planning end-of-life care in advance' and 'Staff and carer education'. Healthcare professionals also developed research questions for their topics of choice which were refined to incorporate carers' views. These questions are an important starting point for future end-of-life research within Greater Manchester.

Experiences and perceptions of culturally and linguistically diverse family carers of people with dementia.

PubMed

Boughtwood, Desiree Leone; Adams, Jon; Shanley, Chris; Santalucia, Yvonne; Kyriazopoulos, Helena

2011-06-01

Dementia incidence rates are rapidly increasing among culturally and linguistically diverse (CALD) Australians, and there is very little local research to inform practice. In response, a qualitative study employing focus group methods was undertaken with carers from 4 CALD communities-Arabic-speaking, Chinese-speaking, Italian-speaking and, Spanish-speaking. The study examined the experiences and perceptions of these family carers with regard to their caregiving for a person living with dementia (PLWD). Analysis revealed that while considerable similarities exist across the experiences and perceptions of carers from all 4 CALD communities, there were nevertheless some important distinctions across the different groups. These study findings have significant implications for those working with CALD communities.

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

PubMed Central

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

2017-01-01

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

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

Study protocol: pragmatic randomized control trial of an internet-based intervention (My tools 4 care) for family carers.

PubMed

Duggleby, Wendy; Ploeg, Jenny; McAiney, Carrie; Fisher, Kathryn; Swindle, Jenny; Chambers, Tracey; Ghosh, Sunita; Peacock, Shelley; Markle-Reid, Maureen; Triscott, Jean; Williams, Allison; Forbes, Dorothy; Pollard, Lori

2017-08-14

Family carers of older persons with Alzheimer's' disease and related dementia (ADRD) and multiple chronic conditions (MCC) experience significant, complex, and distressing transitions such as changes to their environment, roles and relationships, physical health, and mental health. An online intervention (My Tools 4 Care) was developed for family carers of persons with ADRD and MCC living at home, with the aim of supporting these carers through transitions and increasing their self-efficacy, hope, and health related quality of life (HRQoL). This study will evaluate My Tools 4 Care (MT4C) by asking the following research questions: 1. Does use of MT4C result in a 3 month (immediately post intervention) and 6-month (3 months after intervention) increase in HRQoL, self-efficacy, and hope, in carers of persons with ADRD and MCC compared to an educational control group? 2. Does use of MT4C help carers of community-dwelling older adults with ADRD and MCC deal with significant changes they experience as carers? and 3. Are the effects/benefits of the MT4C intervention achieved at no additional cost compared to an educational control group? Using a pragmatic mixed methods randomized controlled trial design, 180 family carers of community dwelling older persons (65 years of age and older) with ADRD and MCC will participate in the study. Data will be collected from the intervention and an educational control group at four time points: baseline, 1 month, 3 and 6 months. We expect to find that family carers using MT4C will show greater improvement in hope, self-efficacy and HRQoL, at no additional cost from a societal perspective, compared to those in the educational control group. General estimating equations will be used to determine differences between groups and over time. Data collection began in Ontario and Alberta Canada in June 2015 and is expected to be completed in June 2017. The results will inform policy and practice as MT4C can be easily revised for local

Family Carers' Experience of the Need for Admission of Their Relative with an Intellectual Disability to an Assessment and Treatment Unit

ERIC Educational Resources Information Center

James, Neil

2016-01-01

Background: There is limited research that explores the experiences of family carers of individuals with an intellectual disability requiring admission to a specialist National Health Service Assessment and Treatment Unit. Accordingly, this study aimed to explore family carers' experience in respect of this phenomenon and their relationships with…

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

PubMed

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

2015-07-06

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

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

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

PubMed

Arntzen, Cathrine; Holthe, Torhild; Jentoft, Rita

2016-07-01

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

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…

Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study.

PubMed

Caswell, Glenys; Pollock, Kristian; Harwood, Rowan; Porock, Davina

2015-08-01

This paper focuses on communication between hospital staff and family carers of patients dying on acute hospital wards, with an emphasis on the family carers' perspective. The age at which people in the UK die is increasing and many continue to die in the acute hospital setting. Concerns have been expressed about poor quality end of life care in hospitals, in particular regarding communication between staff and relatives. This research aimed to understand the factors and processes which affect the quality of care provided to frail older people who are dying in hospital and their family carers. The study used mixed qualitative methods, involving non-participant observation, semi-structured interviews and a review of case notes. Four acute wards in an English University teaching hospital formed the setting: an admissions unit, two health care of older people wards and a specialist medical and mental health unit for older people. Thirty-two members of staff took part in interviews, five members of the palliative care team participated in a focus group and 13 bereaved family carers were interviewed. In all, 245 hours of observation were carried out including all days of the week and all hours of the day. Forty-two individual patient cases were constructed where the patient had died on the wards during the course of the study. Thirty three cases included direct observations of patient care. Interviews were completed with 12 bereaved family carers of ten patient cases. Carers' experience of the end of life care of their relative was enhanced when mutual understanding was achieved with healthcare professionals. However, some carers reported communication to be ineffective. They felt unsure about what was happening with their relative and were distressed by the experience of their relative's end of life care. Establishing a concordant relationship, based on negotiated understanding of shared perspectives, can help to improve communication between healthcare professionals

Understanding carers' lived experience of stigma: the voice of families with a child on the autism spectrum.

PubMed

Broady, Timothy R; Stoyles, Gerard J; Morse, Corinne

2017-01-01

Existing research suggests that there are several unique challenges associated with caring for a child on the autism spectrum. Despite a growing evidence base regarding autism spectrum disorders and their increasing prevalence, children on the autism spectrum and their families continue to perceive stigmatisation from various sources throughout the community. These perceptions of stigma can profoundly impact the quality of life of these children and their carers alike. This exploratory study sought to investigate carers' perceptions of stigma in caring for a child with high functioning autism. Fifteen carers from Sydney and the South Coast regions of New South Wales, Australia, participated in semi-structured interviews regarding their caring experiences and any perceived encounters with stigma. Four domains of stigmatising experiences were identified: (i) lack of knowledge, (ii) judgement, (iii) rejection and (iv) lack of support. These domains were each reported to exist in four main contexts: (i) school, (ii) public, (iii) family and (iv) friends. These domains and contexts established a framework which provided a detailed account of how and where carers felt stigmatised, including the suggestion of a stigmatising pathway through the four domains. The main contexts in which stigma was perceived also appeared to be related, with those carers who experienced stigma in one context being more likely to report similar experiences in other contexts. Any attempts to empower carers in the face of stigmatisation should therefore consider each of these domains, the pathway that connects them and the relationship between different social contexts. Through identifying this pathway, supportive services can be acutely aware of how carers may perceive potentially stigmatising experiences and therefore provide appropriate interventions or support for the relevant stage of the pathway. © 2015 John Wiley & Sons Ltd.

Supporting family carers providing end-of-life home care: a qualitative study on the impact of a hospice at home service.

PubMed

Jack, Barbara A; O'Brien, Mary R; Scrutton, Joyce; Baldry, Catherine R; Groves, Karen E

2015-01-01

To explore bereaved family carers' perceptions and experiences of a hospice at home service. The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home. A hospice at home service was developed to meet patients' and families' needs by providing individually tailored resources. A qualitative study. Data were collected by semi-structured, digitally recorded interviews from 20 family carers who had experienced the service. Interviews were transcribed verbatim and a thematic approach adopted for analysis. All participants reported a personal positive impact of the service. Family carers commented the service provided a valued presence, they felt in good hands and importantly it helped in supporting normal life. The impact of an individualised, targeted, hospice at home service using dedicated, palliative care trained, staff, is perceived positively by family carers and importantly, supportive of those with additional caring or employment commitments. The emergence of hospice at home services has resulted in more options for patients and their families, when the increased amount of care a family member has to provide in these circumstances needs to be adequately supported, with the provision of a flexible service tailored to individual needs and delivered by appropriately trained staff. © 2014 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd.

eHealth interventions for family carers of people with long term illness: A promising approach?

PubMed

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

2018-03-01

Family carers of people who have long term illness often experience physical and mental health morbidities, and burden. While there is good evidence to suggest that carers benefit from psychosocial interventions, these have primarily been delivered via face-to-face individual or group-formats. eHealth interventions offer a novel, accessible and self-paced approach to care delivery. Whether these are effective for carers' wellbeing has been little explored. This paper reports the first comprehensive systematic review in this area. A total of 78 studies, describing 62 discrete interventions, were identified. Interventions commonly aimed to promote carers' knowledge, self-efficacy, caregiving appraisal, and reduce global health morbidities. Interventions were offered to carers of people with a wide range of long term illness; dementia has been the most researched area, as reported in 40% of studies. Clinical and methodological heterogeneity in interventions precluded meta-analyses, and so data were analysed narratively. The most popular approach has comprised psychoeducational interventions delivered via an enriched online environment with supplementary modes of communication, such as network support with professionals and peers. Overall, carers appreciate the flexibility and self-paced nature of eHealth interventions, with high rates of satisfaction and acceptability. More studies using robust designs are needed to extend the evidence base. Copyright © 2018 The Authors. Published by Elsevier Ltd.. All rights reserved.

Experiences, understandings and support needs of family carers of older patients with delirium: a descriptive mixed methods study in a hospital delirium unit.

PubMed

Toye, Christine; Matthews, Anne; Hill, Andrew; Maher, Sean

2014-09-01

Delirium is common in older patients. Little is known of support needs of families of older hospital patients with delirium. To inform nursing practice, we sought to describe families' experiences, understanding of delirium and delirium care, and support needs. Descriptive mixed methods. Review of questionnaire items used with families of people with terminal delirium informed development of a new questionnaire to evaluate the support needs in our study population. In a tertiary hospital delirium unit, we recruited 17 family carers of older patients with (non-terminal) delirium to respond to this questionnaire. Twelve participants (11 female) also took part in interviews addressing the study's aims. Descriptive statistics were calculated and thematic analysis was undertaken. From the survey, key family issues included distress about the patient's condition, worries about future care, and a need for more information about how the patient might feel and how families could support the patient. Themes from interviews included The admission experience, Worries and concerns, Feeling supported, and The discharge experience. Limited understanding of delirium underpinned all themes. Families experienced shock and sadness at the change in the patient; they were reassured by the specialist care but needed more information about delirium, its effects and outcomes, and how they could help with care. Meeting long-term postdischarge needs was a key concern. In this study, families with a hospitalised older relative who had delirium described a distressing experience and needs for informational support. Further research is needed outside of delirium-specific units and in samples including a greater proportion of male relatives. Nurses should work within the interdisciplinary team to ensure a planned, sensitive and timely approach to informing the patient's family about delirium and its implications for their relative, recognising the family carer's role and likely distress. �

The Role of Nurse Leaders in Advancing Carer Communication Needs across Transitions of Care: A Call to Action.

PubMed

Udod, Sonia A; Lobchuk, Michelle

2017-01-01

This paper focuses on the central role of senior nurse leaders in advancing organizational resources and support for communication between healthcare providers and carers that influences patient and carer outcomes during the transition from hospital to the community. A Think Tank (Lobchuk 2012) funded by the Canadian Institutes of Health Research (CIHR) gathered interdisciplinary and intersectoral stakeholders from local, national and international levels to develop a Family Carer Communication Research Collaboration. Workshop stakeholders addressed critical challenges in meeting communication needs of carers as partners with clinicians in promoting safe care for the elderly, chronically or seriously ill or disabled individuals in the community. Key priority areas identified the need to uncover nurse leader perspectives at the system, nurse leader, healthcare provider and patient levels where communication with carers occurs. The overarching outcome from the workshop focuses on the need for nurse leaders to advocate for patients and their families in meeting carer communication needs. The authors' "call to action" requires commitment and investment from nurse leaders in the critical juncture of healthcare delivery to strengthen communication between healthcare providers and carers that influence patient and carer outcomes in seamless transitions of care.

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…

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

ERIC Educational Resources Information Center

Smyth, Ciara; Blaxland, Megan; Cass, Bettina

2011-01-01

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

Depressive symptoms in older female carers of adults with intellectual disabilities.

PubMed

Chou, Y C; Pu, C-Y; Fu, L-Y; Kröger, T

2010-12-01

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). In total, 350 female family carers aged 55 and older took part and completed the interview in their homes. The survey package contained standardised scales to assess carer self-reported depressive symptoms, social support, caregiving burden and disease and health, as well as adult and carer sociodemographic information. Multiple linear regressions were used to identify the factors associated with high depressive symptoms in carers. Between 64% and 72% of these carers were classified as having high depressive symptoms. The factors associated with carer self-reported depressive symptoms were carer physical health, social support and caregiving burden; overall, the carer self-reported physical health was a stronger factor associated with depressive symptoms than their physical disease status. The level of the adult with ID's behavioural functioning and the carer age, marital status, employment status, education level and the family income level were not significantly associated with carer depressive symptoms. The factors identified in this study as correlating with self-reported depressive symptoms suggest that researchers and mental health professionals should collaborate to help improve the physical health and social support networks of the most vulnerable older female family carers. This should reduce depressive symptoms directly among this high-risk group. © 2010 The Authors. Journal of Intellectual Disability Research © 2010 Blackwell Publishing Ltd.

Interventions for adult family carers of people who have had a stroke: a systematic review.

PubMed

Brereton, Louise; Carroll, Christopher; Barnston, Sue

2007-10-01

A systematic review of the effectiveness of interventions for adult family carers of people with stroke, and an exploratory examination of the relationship between the conceptual basis of these interventions and their effectiveness. Seventeen electronic databases and grey literature sources were searched, including ASSIA, BNI, Cochrane Library, CINAHL, EMBASE, MEDLINE, PsycINFO, Social Science Citation Index and the Science Citation Index, HMIC and the National Research Register. Authors of unpublished material were contacted for data and additional publications. Reference and citation tracking was performed on included publications. randomized controlled trials of interventions aimed primarily at adult family carers of people post stroke; carers were the primary sample; primary outcomes reported were for carers. Two independent reviewers screened titles and abstracts to identify publications and extract data. Quality assessment was performed to weight study findings. Eight papers were found reporting on six complex, generally heterogeneous, interventions: caregiver training; education and counselling; social problem-solving partnerships, delivered principally by telephone; a psycho-educational telephone support group; a nurse-led support and education programme; and a support programme, delivered either to groups in hospital or individuals during home visits. Half of the interventions were based on stress-coping theories; the remainder did not identify a conceptual basis for the intervention. Some benefits were reported for all interventions, although trials were generally of low quality, preventing firm conclusions being drawn. The presence of a conceptual basis for interventions does not appear to influence effectiveness.

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

PubMed

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

2014-06-06

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

The good doctor: the carer's perspective.

PubMed

Levine, Carol

2004-01-01

Carers are family members, friends, and neighbours who perform medical tasks and personal care, manage housekeeping and financial affairs, and provide emotional support to people who are ill, disabled, or elderly. From a carer's perspective, the primary requisite for a good doctor is competence. Assuming equal technical skills and knowledge, the difference between 'good' and 'bad' doctors comes down to attitudes and behaviour-communication. An important aspect of communication is what doctors say to carers, and how they interpret what carers say to them. Body language-stances, gestures and expression-communicates as well. Good doctors are surrounded by courteous, helpful and efficient assistants. Doctors can make two types of errors in dealing with carers. Type 1 errors occur when doctors exclude the carer from decision making and information. Type 2 errors occur when doctors speak only to the carer and ignore the patient. Good doctors, patients and carers confront the existential meaning of illness together.

A qualitative study protocol of ageing carers' caregiving experiences and their planning for continuation of care for their immediate family members with intellectual disability.

PubMed

Low, Lisa Pau Le; Chien, Wai Tong; Lam, Lai Wah; Wong, Kayla Ka Yin

2017-04-07

Understanding the difficulties and needs of the family carers in taking care of a person with ID can facilitate the development of appropriate intervention programmes and services to strengthen their caring capacity and empower them to continue with their caring roles. This study aims to explore ageing family carers' caregiving experiences and the plans they have to provide care for themselves and their ageing children with mild or moderate intellectual disability (ID). A constructivist grounded theory will be used to interview around 60 carers who have a family member with mild or moderate ID and attending sheltered workshops in Hong Kong. Constant comparative analysis methods will be used for data analysis. The theory will capture family caregiving experiences and the processes of carers in addressing caregiving needs, support received and plans to continue to provide care for themselves and their relatives with ID in their later life. New insights into the emerging issues, needs and plights of family caregivers will be provided to inform the policies and practices of improving the preparation for the ageing process of the persons with ID, and to better support the ageing carers. The theoretical framework that will be generated will be highly practical and useful in generating knowledge about factors that influence the caregiving processes; and, tracking the caregiving journey at different time-points to clearly delineate areas to implement practice changes. In this way, the theoretical framework will be highly useful in guiding timely and appropriate interventions to target at the actual needs of family carers as they themselves are ageing and will need to continue to take care of their family members with ID in the community.

A study of family carers of people with a life-threatening illness. 2: Implications of the needs assessment.

PubMed

Scott, G

2001-07-01

This is the second of two articles that consider the findings of a Carers' Assessment of Difficulties Index (CADI) (Nolan et al, 1998) delivered in a palliative care context. It analyses the implications of these findings for practitioners concerned with the delivery of palliative care to such carers and their families. The development of support strategies and services addressing their needs are also presented against a backdrop of transactional stress theory. For people new to caring, recommendations for the local service include early intervention through informational support and validation of their emotional responses to caring; for longer-term carers they include assistance with cognitive reappraisal of the stressfulness of caring and regular 'respite' and socializing opportunities. These are taking place in a political climate that finally recognizes the contribution and value of carers (Department of Health, 1999). The research behind these carer identity and recognition initiatives aims to apply the spirit of public recognition and practical wisdom of palliative care expertise by responding sensitively to the specific needs of carers of people with a life-threatening illness.

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

PubMed

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

2015-03-01

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

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

What parents and carers think medical students should be learning about communication with children and families.

PubMed

Hammond, Margaret; McLean, Elspeth

2009-09-01

Our objective was to dynamically engage with parents and carers of children treated in a large children's hospital as experts by experience, to find out what they thought medical students should be learning about communicating with children and families in order to inform our communication teaching. We used focus groups to facilitate parents and carers in articulating the communication issues they felt were important for medical students to learn. These data were analysed, using qualitative and quantitative methods, to produce a survey for a Delphi consultation. The results of this stage were mapped onto the Calgary-Cambridge framework for the medical interview. There was considerable overlap of the data on the Calgary-Cambridge framework. There was, however, an emphasis by respondents on perceptual skills, self-awareness and partnership. Within the main tasks of the Calgary-Cambridge framework, new objectives emerged, including giving information in the right place, and the importance of the family in the multidisciplinary team. A new main task, Preparation, was highlighted. Active collaboration with parents and carers revealed areas for enhancement in our communication skill teaching, particularly with regard to relational and perceptual skills. Ways of including effective teaching of perceptual skills and the relational and humanistic aspects of communication must be explored in order to meet the needs of child patients and their families.

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,…

The influence of institutional discourses on the work of informal carers: an institutional ethnography from the perspective of informal carers.

PubMed

Øydgard, Guro Wisth

2017-09-07

The growing numbers of seniors worldwide and the need for support and services that follow from a higher standard of living have led to an increased focus on scarce benefits and limited human resources. At the same time, many western countries have had to make welfare cuts to balance budgets. This has brought the contributions of informal carers to the fore. Thus far, the focus has generally been on the need for the informal carers to receive information and support; to enable them to contribute. The study is designed as an institutional ethnography. The article describes the social processes of informal caregiving and how it interacts with formal caregiving, from the perspective of informal carers. The research question for the study is How do institutional discourses on the work of informal carers influence informal carework? Data for the article comes from qualitative semi-structured interviews with 26 informal carers caring for persons with dementia in Norway, and with 7 administrators working in the allocation divisions of five different municipalities. The results demonstrate how three institutional discourses of informal carers' work influence the allocation divisions' practices and the work of informal carers in caring for their next of kin. The three discourses are categorised as moral and family obligation, shared care and task specificity. The informal carers want to contribute, as they feel a family and moral obligation to their next of kin. In the interaction with the allocation division, they find that the expectation that they will share in the carework and perform specific tasks forces them to perform care within a framework set by the public services. The findings suggest that further research should challenge how services are distributed and allocated rather than focus on how to enable informal carers to fulfil their role better. Because of their moral and family obligation, the informal carers do not have to be forced to perform certain tasks or

Physical and Psychological Health of Family Carers Co-Residing with an Adult Relative with an Intellectual Disability

ERIC Educational Resources Information Center

Grey, Jillian M.; Totsika, Vasiliki; Hastings, Richard P.

2018-01-01

Background: Providing long-term care to an adult relative with intellectual disability can impact negatively on caregivers' health and well-being. Methods: Data were collected via online and postal questionnaires on 110 family carers' physical and psychological health, family stress and perceived positive gains from caring. Psychological…

Coping strategies and styles of family carers of persons with enduring mental illness: a mixed methods analysis.

PubMed

Kartalova-O'Doherty, Yulia; Doherty, Donna Tedstone

2008-03-01

A qualitative exploratory study investigated the experiences and needs of family carers of persons with enduring mental illness in Ireland. The current mixed-methods secondary study used content analysis and statistical procedures to identify and explore the coping strategies emerging from the original interviews. The majority of family carers reported use of active behavioural coping strategies, sometimes combined with active cognitive or avoidance strategies. The percentage of cares reporting use of active cognitive strategies was the lowest among those whose ill relative lived in their home, and the highest among those whose relative lived independently. Participants with identified active cognitive strategies often reported that their relative was employed or in training. Participants who reported use of avoidance strategies were significantly younger than participants who did not report use of such strategies. The lowest percentage of avoidance strategies was among participants whose ill relative lived independently, whereas the highest was among carers whose relative lived in their home. The findings of this study highlight the importance of a contextual approach to studying coping styles and processes. Further research questions and methodological implications are discussed.

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

ERIC Educational Resources Information Center

Wlodarczyk, Julian; Lawn, Sharon

2017-01-01

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

Electric-powered indoor/outdoor wheelchairs (EPIOCs): users' views of influence on family, friends and carers.

PubMed

Frank, Andrew; Neophytou, Claudius; Frank, Julia; de Souza, Lorraine

2010-01-01

This study explored the effects of electric-powered indoor/outdoor wheelchair (EPIOC) provision to users on their family and carers. EPIOC users receiving their chairs between February and November 2002 (N = 74) were invited to participate in a telephone questionnaire/interview, and 64 agreed. This study examined the responses to the question 'Has the use of your EPIOC affected your family or friends in any way?' and related comments. Interviews were analysed using a qualitative framework approach to identify emergent themes. In addition, the proportion of individuals raising issues related to each theme was determined. Participants were interviewed 10-19 (mean = 14.3) months after chair delivery. The following themes emerged: reduced physical burden on family/friends and increased independence and freedom. However, an EPIOC does not eliminate other practical problems particularly during transportation and negotiating kerbs and slopes. Users also reported anxiety/worry in relationship to EPIOC use, e.g., weather conditions, personal safety (muggings), use of ramps and kerbs. There are considerable benefits to families and carers associated with powered wheelchair use. A reduction in the physical demand for pushing and increased freedom were identified. These benefits appear to outweigh the residual practical difficulties and worries.

Caring Situation, Health, Self-efficacy, and Stress in Young Informal Carers of Family and Friends with Mental Illness in Sweden.

PubMed

Ali, Lilas; Krevers, Barbro; Skärsäter, Ingela

2015-06-01

This study compared the caring situation, health, self-efficacy, and stress of young (16-25) informal carers (YICs) supporting a family member with mental illness with that of YICs supporting a friend. A sample of 225 carers, assigned to a family group (n = 97) or a friend group (n = 128) completed the questionnaire. It was found that the family group experiences a lower level of support and friends experienced a lower positive value of caring. No other differences in health, general self-efficacy and stress were found. YICs endure different social situations, which is why further study of the needs of YICs, especially those supporting friends, is urgently needed.

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

ERIC Educational Resources Information Center

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

2012-01-01

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

The development and evaluation of a multimedia resource for family carers of patients receiving palliative care: a consumer-led project.

PubMed

Thomas, Kristina; Moore, Gaye

2015-06-01

Previous intervention research has shown that group education sessions for carers are effective but not always feasible due to the demands of the caregiving role and the difficulty in getting carers to attend. This project was a consumer-led research initiative to develop and evaluate a multimedia resource (DVD) providing information and support for carers of people receiving palliative care. Eight carers were recruited from a community palliative care service to form a steering committee for the project. In collaboration with two researchers, the committee discussed the topics that would be included in the resource, developed an interview guide, participated in the filmed interviews, and developed the evaluation program. The steering committee participated in a focus group as part of the evaluation to elicit their experiences of the project. An evaluation was conducted that included the following: questionnaires for 29 carers and 17 palliative care health professionals; follow-up telephone interviews with carers; a focus group with health professionals; and a focus group with the Carer Steering Committee. The carers and health professionals reported that the DVD was informative (93 and 94%, respectively), realistic (96 and 88%), supportive (93 and 88%), and helpful (83 and 100%). All health professionals and carers reported that they would recommend the resource to carers. Carers on the steering committee reported substantial benefits that involved the opportunity to help others and to openly discuss and reflect on their experiences. This is an important resource that can be utilized to support family carers and introduce palliative care. Currently, 1500 copies have been distributed to palliative care services and professionals nationwide and is available online at centreforpallcare.org/index.php/resources/carer_dvd/. Development of this DVD represents a strong collaboration between carers and researchers to produce a resource that is informative, supportive, and

Understanding the experience of "burnout" in first-episode psychosis carers.

PubMed

Onwumere, Juliana; Sirykaite, Sandra; Schulz, Joerg; Man, Emma; James, Gareth; Afsharzadegan, Roya; Khan, Sanna; Harvey, Raythe; Souray, Jonathan; Raune, David

2018-05-01

The first onset of psychosis can exert a significant negative impact on the functioning and positive wellbeing of family carers. Carer reports of "burnout" have recently been recorded in early psychosis carers, though the literature is scarce detailing our understanding of how burnout relates to the primary experience of caregiving. The current study investigated reports of burnout and its relationship with beliefs about caregiving and wellbeing in a large group of early psychosis carers who were routinely assessed within an early intervention team. Using a cross-sectional design, 169 early psychosis carers completed the Maslach Burnout Inventory alongside measures of caregiving experiences, affect and wellbeing. The mean illness length for patients with psychosis was 18 months. Their mean age was 24.4 years and most was male (65%). The majority of carer participants were parental caregivers and living with their relative with psychosis. Across the three key burnout dimensions, 58% of the sample reported high levels of emotional exhaustion; 31% endorsed high levels of depersonalization; and 43% reported low levels personal accomplishment. The most severe level of burnout, reflecting elevated rates across all three dimensions, was observed in 16% of the sample. Carer burnout was positively associated with negative caregiving experiences (i.e. burden), poor affect, and reduced levels of positive wellbeing and perception of being in good health. Reports by early psychosis carers of exhaustion, feeling inadequate and expressing negativity towards the relative they care for is not uncommon and are closely associated with their overall negative appraisals of caregiving. The results underscore the importance of developing targeted interventions during the early phase, which are designed to reduce the development and entrenchment of burnout responses in carers, but to also mitigate its negative sequelae. Copyright © 2018. Published by Elsevier Inc.

A qualitative analysis of the information needs of informal carers of terminally ill cancer patients.

PubMed

Rose, K E

1999-01-01

This article discusses issues relating to information arising from a qualitative study of the experiences of informal carers of terminally ill cancer patients. Qualitative data analysis, drawing on methods of literary criticism, revealed that information was a key area in carers' experience. The findings are presented in the context of needing to provide individualized care to every family and deal with information needs relating to the illness and prognosis. The question of who is in possession of what information is raised, and the effect that this can have on couples is discussed, together with the issue of false information which carers may receive. The discussion centres on the complexity of understanding carers' information needs and considers how these are affected by the context within which carers operate. The work of Glaser and Strauss on awareness contexts is discussed in this respect. Finally, the importance of the nurse's role as a sensitive mediator of information is considered.

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.…

Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis

PubMed Central

Maio, Laura; Rait, Greta; Iliffe, Steve

2014-01-01

Background: People with dementia do not always receive good quality end-of-life care, with undertreated pain, aggressive medical interventions and limited access to hospice care being common. Family carers often provide the majority of informal care for people with dementia, therefore may be best placed to comment on quality of care. Aim: We explored what quality end-of-life care for dementia is from the perspective of family carers. Design: A review of qualitative evidence taking a systematic approach using a narrative synthesis with tabulation, textual description of studies and thematic analysis as tools, following the guidelines from the Economic and Social Research Council. Data sources: Keywords and subject headings were searched in MEDLINE, EMBASE, CINAHL, SCIE and PsycINFO for studies from 1990 in April 2012 and updated in May 2013. Reference lists were checked and citation searches undertaken. Results: Eight studies were included. There was an overarching theme of ‘A family’s belief of death and their choice of treatment’. Three further themes were then identified to explain family carers’ beliefs: the relationship with professionals as a core component of care quality; emotional and commitment pressures of caring and finally, family carers’ ability to think about death and dying. Conclusion: It is difficult to define what constitutes high-quality end-of-life care for people with dementia from the perspective of family carers. Their views expressed in the literature appear to demonstrate more variation of preference of care and treatment and their uncertainty of this. PMID:24625567

Validation of the "Quality of Life in Life-Threatening Illness--Family Carer Version" (QOLLTI-F) in German-speaking carers of advanced cancer patients.

PubMed

Schur, Sophie; Ebert-Vogel, Alexandra; Amering, Michaela; Masel, Eva Katharina; Neubauer, Marie; Schrott, Andrea; Sibitz, Ingrid; Watzke, Herbert; Schrank, Beate

2014-10-01

Palliative care is a multidisciplinary approach that focuses on the improvement of quality of life (QOL) of patients as well as their families. QOL research in palliative care has so far primarily focused on patients, but interest in the QOL of their relatives is increasing. For instruments measuring QOL in relatives, data on psychometric properties are often limited, and so far, none has been available in German. This study translates and validates the "Quality of Life in Life-Threatening Illness-Family Carer Version" (QOLLTI-F) in German-speaking carers of advanced cancer patients. The QOLLTI-F was translated from English into German according to the World Health Organisation's recommendations and validated in informal caregivers of terminally ill cancer patients of three Viennese hospitals. Hope was measured to assess concurrent validity; traumatic stress, anxiety, depression and subjective burden were measured to assess discriminant validity. Internal consistency, test-retest reliability and discriminative power were established. The scale's factor structure was explored using a set of factor analyses. Of the 308 caregivers participating in the study, 42 completed the QOLLTI-F retest after a mean of 5 days. The internal consistency was α = 0.85 for the overall scale, Pearson correlation between test and retest lay at r = 0.92. As expected, a significant positive correlation was found with hope (r = 0.40) and significant negative correlations with traumatic stress (r = -0.41), depression (r = -0.51), anxiety (r = -0.52) and overall subjective burden (r = -0.55). The original seven-factor structure was not reproduced, but the scale showed a stable four-factor structure with factors capturing (1) feelings about carers' own life, (2) professional care, (3) interaction with the patient and others and (3) carers' outlook on life. This study provides a sound translation and validation of the first QOL assessment tool for caregivers of

Effects of a needs-based education programme for family carers with a relative in an intensive care unit: a quasi-experimental study.

PubMed

Chien, Wai-Tong; Chiu, Y L; Lam, Lai-Wah; Ip, Wan-Yim

2006-01-01

Critical illness and subsequent hospitalisation of a relative to an intensive care unit (ICU) can result in many physiological and psychosocial problems for patients and their family members. Caring for the anxiety and frustration of these families is an integral part of critical care nursing. The purpose of this study was to examine the effect of a needs-based education programme provided within the first 3 days of patients' hospitalisation, on the anxiety levels and satisfaction of psychosocial needs of their families. This was a quasi-experimental study with pre- and post-test design. A convenience sample was recruited over a period of three months, consisting of one primary family carer of each critically ill patient who had been admitted to an ICU in Hong Kong. Conducted by an ICU nurse specially assigned for the purpose, family carers in the experimental group (n=34) received an individual education programme based on the results of a literature review and an individual family needs assessment carried out at the time of patient admission, using the Critical Care Family Needs Inventory. The subjects in the control group (n=32) received the usual orientation and explanation given by the ICU nurses. Anxiety and need satisfaction were measured in the two groups at pre- and post-test and their mean scores were compared. Of the ten most important statements identified by the family carers in the two groups, the statements regarding the needs for information and assurance were found to predominate. After the needs-based intervention, the experimental group reported significantly lower levels of anxiety and higher levels of satisfaction of family needs than the control group at the post-test. The findings support the effectiveness of providing families of newly admitted critically ill patients, with a needs-based educational intervention to allay anxiety and satisfy immediate psychosocial needs. The formulation of a family education programme should be based on the

The effectiveness of patient-family carer (couple) intervention for the management of symptoms and other health-related problems in people affected by cancer: a systematic literature search and narrative review.

PubMed

Hopkinson, Jane B; Brown, Joanne C; Okamoto, Ikumi; Addington-Hall, Julia M

2012-01-01

Cancer is widely acknowledged to impact on the whole family. Yet, we do not know if there is benefit (or harm) from patient-family carer interventions in the context of cancer care. To report a systematic search for and narrative review of patient-family carer interventions tested in the context of cancer care for effect on symptoms and other health-related problems in patients and/or their family members. A systematic literature search was carried out using Cochrane principles. Searches were of MEDLINE, EMBASE, PsycINFO, and CINAHL databases for reported trials of patient-family carer focused interventions. Outcomes of interest were health indicators; measures of physical, psychological, social, and quality-of-life status of the patient and/or family member(s). Limits were English language; 1998 to March 2010; and adults. Relevant information was extracted, quality assessed using the Cochrane Collaboration's tool for assessing risk of bias, and presented as a narrative synthesis (meta-analysis was not appropriate). The review found no empirically tested interventions for family groups (patient and two or more family members), but 22 interventions for patient-family carer partnerships (couple interventions) tested in 23 studies and reported in 27 publications. Recruitment and attrition were problematic in these studies, limiting the reliability and generalizability of their results. In the trials of cancer couple interventions included in the review, a pattern emerged of improvement in the emotional health of cancer patients and their carers when the intervention included support for the patient-family carer relationship. Further investigation is warranted. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

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…

Qualitative Exploration of the Suitability of Capability Based Instruments to Measure Quality of Life in Family Carers of People with Dementia

PubMed Central

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

2014-01-01

Background. In an ageing population, many individuals find themselves becoming a carer for an elderly relative. This qualitative study explores aspects of quality of life affected by caring for a person with dementia, with the aim of identifying whether capability based questionnaires are suitable for measuring carer quality of life. Methods. Semistructured interviews lasting up to an hour were conducted, November 2010–July 2011, with eight family carers of people with dementia. Interviews typically took place at the participants' homes and were recorded and transcribed verbatim. Framework analysis was used to code and analyse data. Domains from three capability based questionnaires (ICECAP-O, Carer Experience Scale, and ASCOT) were used as initial codes. Similar codes were grouped into categories, and broader themes were developed from these categories. Results. Four themes were identified: social network and relationships; interactions with agencies; recognition of role; and time for oneself. Conclusions. By identifying what affects carers' quality of life, an appropriate choice can be made when selecting instruments for future carer research. The themes identified had a high degree of overlap with the capability instruments, suggesting that the capabilities approach would be suitable for future research involving carers of people with dementia. PMID:24967332

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

PubMed

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

2007-06-01

Develop and assess the psychometric properties of the Carer - Head Injury Participation Scale (C-HIPS) and its biggest factor the Carer - Head Injury Neurobehavioral Assessment Scale (C-HINAS). Furthermore, the aim was to examine the inter-informant reliability by comparing the self reports of individuals with traumatic brain injury (TBI) with the carer reports on the C-HIPS and the C-HINAS. Thirty-two TBI individuals and 27 carers took part in in-depth qualitative interviews exploring the consequences of the TBI. Interview transcripts were analysed and key themes and concepts were used to construct a 49-item and 58-item patient (Patient - Head Injury Participation Scale [P-HIPS]) and carer outcome measure (C-HIPS) respectively, of which 49 were parallel items and nine additional items were used to assess carer burden. Postal versions of the P-HIPS, C-HIPS, Mayo Portland Adaptability Inventory-3 (MPAI-3), and the Glasgow Outcome Scale-Extended (GOSE) were completed by a cohort of 113 TBI individuals and 80 carers. Data from a sub-group of 66 patient/carer pairs were used to compare inter-informant reliability between the P-HIPS and the C-HIPS, and the P-HINAS and the C-HINAS respectively. All individual 49 items of the C-HIPS and their total score showed good test-retest reliability (0.95) and internal consistency (0.95). Comparisons with the MPAI-3 and GOSE found a good correlation with the MPAI-3 (0.7) and a moderate negative correlation with the GOSE (-0.6). Factor analysis of these items extracted a 4-factor structure which represented the domains 'Emotion/Behavior' (C-HINAS), 'Independence/Community Living', 'Cognition', and 'Physical'. The C-HINAS showed good internal consistency (0.92), test-retest reliability (0.93), and concurrent validity with one MPAI subscale (0.7). Assessment of inter-informant reliability revealed good correspondence between the reports of the patients and the carers for both the C-HIPS (0.83) and the C-HINAS (0.82). Both the C

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…

‘Familiarity’ as a key factor influencing rural family carers’ experience of the nursing home placement of an older relative: a qualitative study

PubMed Central

2013-01-01

Background Admission to a nursing home is generally regarded as a stressful time for older people and their carers. Although the choice of home is significant in facilitating a more positive transition, few studies have explored this issue in detail, particularly in the context of rural communities. With a worldwide ageing population and an increasing demand for long-term care facilities, it is important to highlight the factors that can improve the experience of entry to long-term care and the role of nursing home staff in facilitating a more positive transition for older people and their families. Methods The overall aim of this qualitative study was to explore rural family carers’ experience of the nursing home placement of an older relative. Semi structured interviews were conducted with 29 relatives of nursing home residents. Participants were selected from a large health and social care trust in the United Kingdom. Data were analysed using grounded theory principles and procedures and NVivo software. Results Rural family carers had a strong sense of familiarity with the nursing homes in their area and this appeared to permeate all aspects of their experience. Carers who reported a high degree of familiarity appeared to experience a more positive transition than others. This familiarity was influenced by the high degree of social capital that was present in the rural community where the study was conducted. This familiarity, in turn, influenced the choice of nursing home and the responses of family carers. The theory that emerged suggests that familiarity was the key factor influencing rural family carers’ experience of the nursing home placement of an older relative. Conclusions The population of the world is ageing and nursing homes are increasingly providing care to older people with multiple and complex needs. This study makes an important contribution to the ways in which the move to long term care can be managed more effectively by increasing

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

ERIC Educational Resources Information Center

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

2012-01-01

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

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.

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

Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial.

PubMed

Livingston, Gill; Barber, Julie; Rapaport, Penny; Knapp, Martin; Griffin, Mark; King, Derek; Livingston, Debbie; Mummery, Cath; Walker, Zuzana; Hoe, Juanita; Sampson, Elizabeth L; Cooper, Claudia

2013-10-25

To assess whether a manual based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia. Randomised, parallel group, superiority trial. Three mental health community services and one neurological outpatient dementia service in London and Essex, UK. 260 carers of family members with dementia. A manual based coping intervention comprising eight sessions and delivered by supervised psychology graduates to carers of family members with dementia. The programme consisted of psychoeducation about dementia, carers' stress, and where to get emotional support; understanding behaviours of the family member being cared for, and behavioural management techniques; changing unhelpful thoughts; promoting acceptance; assertive communication; relaxation; planning for the future; increasing pleasant activities; and maintaining skills learnt. Carers practised these techniques at home, using the manual and relaxation CDs. Affective symptoms (hospital anxiety and depression total score) at four and eight months. Secondary outcomes were depression and anxiety caseness on the hospital anxiety and depression scale; quality of life of both the carer (health status questionnaire, mental health) and the recipient of care (quality of life-Alzheimer's disease); and potentially abusive behaviour by the carer towards the recipient of care (modified conflict tactics scale). 260 carers were recruited; 173 were randomised to the intervention and 87 to treatment as usual. Mean total scores on the hospital anxiety and depression scale were lower in the intervention group than in the treatment as usual group over the eight month evaluation period: adjusted difference in means -1.80 points (95% confidence interval -3.29 to -0.31; P=0.02) and absolute difference in means -2.0 points. Carers in the intervention group were less likely to have case level depression (odds ratio 0.24, 95% confidence interval 0.07 to 0.76) and there

What Are the Key Elements of Educational Interventions for Lay Carers of Patients With Advanced Disease? A Systematic Literature Search and Narrative Review of Structural Components, Processes and Modes of Delivery.

PubMed

Farquhar, Morag; Penfold, Clarissa; Walter, Fiona M; Kuhn, Isla; Benson, John

2016-07-01

Educating carers about symptom management may help meet patient and carer needs in relation to distressing symptoms in advanced disease. Reviews of the effectiveness of carer interventions exist, but few have focused on educational interventions and none on the key elements that comprise them but which could inform evidence-based design. To identify the key elements (structural components, processes, and delivery modes) of educational interventions for carers of patients with advanced disease. We systematically searched seven databases, applied inclusion and exclusion criteria, conducted quality appraisal, extracted data, and performed a narrative analysis. We included 62 articles related to 49 interventions. Two main delivery modes were identified: personnel-delivered interventions and stand-alone resources. Personnel-delivered interventions targeted individuals or groups, the former conducted at single or multiple time points, and the latter delivered as series. Just more than half targeted carers rather than patient-carer dyads. Most were developed for cancer; few focused purely on symptom management. Stand-alone resources were rare. Methods to evaluate interventions ranged from postintervention evaluations to fully powered randomized controlled trials but of variable quality. Published evaluations of educational interventions for carers in advanced disease are limited, particularly for non-cancer conditions. Key elements for consideration in developing such interventions were identified; however, lack of reporting of reasons for nonparticipation or dropout from interventions limits understanding of the contribution of these elements to interventions' effectiveness. When developing personnel-delivered interventions for carers in advanced disease, consideration of the disease (and, therefore, caring) trajectory, intervention accessibility (timing, location, and transport), and respite provision may be helpful. Crown Copyright © 2016. Published by Elsevier Inc

An Educational Intervention to Reduce Pain and Improve Pain Management for Malawian People Living With HIV/AIDS and Their Family Carers: A Randomized Controlled Trial.

PubMed

Nkhoma, Kennedy; Seymour, Jane; Arthur, Antony

2015-07-01

Advances being made in improving access to HIV drugs in resource-poor countries mean HIV patients are living longer, and, therefore, experiencing pain over a longer period of time. There is a need to provide effective interventions for alleviating and managing pain. To assess whether a pain educational intervention compared with usual care reduces pain severity and improves pain management in patients with HIV/AIDS and their family carers. This was a randomized, parallel group, superiority trial conducted at HIV and palliative care clinics of two public hospitals in Malawi. A total of 182 adults with HIV/AIDS (Stage III or IV) and their family carers participated; carer participants were those individuals most involved in the patient's unpaid care. The educational intervention comprised a 30 minute face-to-face meeting, a leaflet, and a follow-up telephone call at two weeks. The content of the educational intervention covered definition, causes, and characteristics of pain in HIV/AIDS; beliefs and myths about pain and pain medication; assessment of pain; and pharmacological and nonpharmacological management. The primary outcome was average pain severity measured by the Brief Pain Inventory-Pain Severity subscale. Assessments were recorded at baseline before randomization and at eight weeks after randomization. Of the 182 patient/carer dyads randomly allocated, 157 patient/carer dyads completed the trial. Patients in the intervention group experienced a greater decrease in pain severity (mean difference = 21.09 points, 95% confidence interval = 16.56-25.63; P < 0.001). A short pain education intervention is effective in reducing pain and improving pain management for Malawian people living with HIV/AIDS and their family carers. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

An exploratory study of GP awareness of carer emotional needs in Western Australia

PubMed Central

Bulsara, Caroline E; Fynn, Noreen

2006-01-01

Background The impact of caring for a family member or friend is a life changing experience. Often carers are struggling to cope with ongoing demands of caring for someone. At some point, most carers will approach their family physician for advice on aspects of their role. Carers Western Australia sought information and opinions of General Practitioners (GPs) regarding being a carer. This exploratory survey was to assess the perceptions of Western Australian GPs regarding their role in providing information and support to carers and their awareness of carer needs and issues. Methods A telephone survey design of an opportunistic sample of 66 Western Australian GPs was conducted. The responses were both closed and open-ended questions to allow for probing of responses. Responses were analysed using both qualitative and quantitative analysis. Results GPs are generally aware of their role in regard to carers and most doctors (88%) said that they had been approached for help in accessing services by carers. A majority of respondents said that carers and spoken to them (70%) and asked for help with (77%) emotional needs. However, when asked how these needs are met, GPs tended to provide practical assistance for the care recipient and carer as a means of addressing those needs. This primarily included providing referral to services to ensure that the carer has practical assistance in caring for the person. However, GPs are less able to provide the necessary emotional or psychological support needed by carers before crisis point is reached. Most doctors said that they had experienced difficulties in providing assistance to carers (84%) at some time. Conclusion GPs may be unable or unwilling to provide the necessary assistance to carers who are showing signs of carer burnout and stress. The GP needs to adopt a more holistic approach when treating a patient as to the interaction with the caregiver. PMID:16719930

Carer mentoring: a mixed methods investigation of a carer mentoring service.

PubMed

Greenwood, Nan; Habibi, Ruth

2014-03-01

Worldwide with ageing populations, the numbers of informal carers are likely to increase. Although being a carer is often satisfying, it can be challenging and require support. Volunteer-provided carer mentoring services where carers are supported by volunteer mentors are one such intervention. However, little is known about the impact of mentoring, carers' experiences or the mechanisms by which these schemes may work. Previous quantitative findings have been inconsistent suggesting a different, mixed methods approach using qualitative and quantitative methods may be valuable. Objectives were to explore two main questions: whether mentoring had a significant positive effect on carer mentees in terms of mental health, quality of life and confidence in caring and to explore how carers experience and perceive the process and benefits of mentoring. In addition, the study aimed to suggest possible mechanisms to understand how mentoring may benefit carers. Mixed methods (quantitative questionnaires and depth interviews) investigated an established mentoring service provided by volunteer mentors. During the study period, 28 carers received mentoring. Of these, 25 carers completed structured questionnaires both before and after mentoring, to determine whether mentoring had an impact on carer wellbeing and confidence in caring. Depth interviews were also undertaken with 11 purposively sampled carers to explore how carers experience and perceive the process and benefits of mentoring. Statistically significant improvements in carer anxiety (p<0.001), depression (p<0.001), quality of life (p=0.02) and confidence in caring (p<0.05 on all dimensions except one) were found. Depth interviews revealed that carers were very positive about mentoring and highlighted many benefits. Findings suggested emotional support, information provision, problem solving facilitation and gaining new perspectives may be mechanisms by which mentoring achieves positive outcomes. Mentor personal

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

PubMed Central

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

2007-01-01

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

Developing a model of short-term integrated palliative and supportive care for frail older people in community settings: perspectives of older people, carers and other key stakeholders.

PubMed

Bone, Anna E; Morgan, Myfanwy; Maddocks, Matthew; Sleeman, Katherine E; Wright, Juliet; Taherzadeh, Shamim; Ellis-Smith, Clare; Higginson, Irene J; Evans, Catherine J

2016-11-01

understanding how best to provide palliative care for frail older people with non-malignant conditions is an international priority. We aimed to develop a community-based episodic model of short-term integrated palliative and supportive care (SIPS) based on the views of service users and other key stakeholders in the United Kingdom. transparent expert consultations with health professionals, voluntary sector and carer representatives including a consensus survey; and focus groups with older people and carers were used to generate recommendations for the SIPS model. Discussions focused on three key components of the model: potential benefit of SIPS, timing of delivery and processes of integrated working between specialist palliative care and generalist practitioners. Content and descriptive analysis was employed and findings were integrated across the data sources. we conducted two expert consultations (n = 63), a consensus survey (n = 42) and three focus groups (n = 17). Potential benefits of SIPS included holistic assessment, opportunity for end of life discussion, symptom management and carer reassurance. Older people and carers advocated early access to SIPS, while other stakeholders proposed delivery based on complex symptom burden. A priority for integrated working was the assignment of a key worker to co-ordinate care, but the assignment criteria remain uncertain. key stakeholders agree that a model of SIPS for frail older people with non-malignant conditions has potential benefits within community settings, but differ in opinion on the optimal timing and indications for this service. Our findings highlight the importance of consulting all key stakeholders in model development prior to feasibility evaluation. © The Author 2016. Published by Oxford University Press on behalf of the British Geriatrics Society.

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

Carer participation in England, Wales and Northern Ireland: a challenge for interprofessional working.

PubMed

Roulstone, Alan; Hudson, Val

2007-06-01

Much policy and practice attention has been focused on the participation and involvement of informal carers in service assessment, provision and review. The advent of the National Carers Strategy, the Community Care Delayed Discharge Act, Carers and Disabled Children Act and latterly the Carers (Equal Opportunities) Act have all played their part in giving greater significance to carer involvement. The role of professional cooperation and willingness to see carers as equal partners is a key factor in achieving these objectives. This paper relates details of a study of current carer participation in England, Wales and Northern Ireland and begs a number of important questions as to the challenges for interprofessional working in supporting carer participation.

How do carers of disabled children cope? The Ugandan perspective.

PubMed

Hartley, S; Ojwang, P; Baguwemu, A; Ddamulira, M; Chavuta, A

2005-03-01

Community-based rehabilitation (CBR) was recommended by the World Health Organization in 1989 as the strategy for improving the quality of life of disabled people and their families, which should be built on local knowledge and practices. In Uganda, there is no documentation on how services relate to local knowledge. There is a need for increased knowledge and understanding of how family members cope with their disabled children to provide the basis for future service development. A qualitative phenomenological design was used to develop an in-depth understanding of how Ugandan families cope with their disabled children in their own communities. Data were collected from 52 families with children with disabilities from five impairment groups, through interviews and observations in three districts of Uganda, one urban, two rural. There are many children with disabilities who are included, loved and cared for by their families. A lot of time and money is spent on seeking a cure. The extended family systems are breaking down and the main burden of caring for a disabled family member generally falls on one, sometimes two, female carers. Male members act as gatekeepers, controlling the key decisions concerning the child and the associated resources. CBR should move the focus of their services away from the disabled individual towards the whole family. It is important to provide accurate information about causes and prevention of impairments, the realities of a cure, support and respite for the female carers, and opportunities for the involvement of fathers. This methodology is a practical mechanism for collecting data that have the potential to positively influence and guide the development of CBR practice in the locality. At a conceptual level the data support the philosophy of inclusion, social integration, the importance of trust and respect, and utilizing a holistic approach. These are eminently transferable to other settings.

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…

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

PubMed

Andersson, Stefan; Magnusson, Lennart; Hanson, Elizabeth

2016-03-01

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

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

PubMed

Olasoji, M; Maude, P; McCauley, K

2017-08-01

service in Victoria Australia as they fulfil their caring role while negotiating support for their relative. A carer is defined as a family member or significant other who is the primary individual who provides informal care for a person with severe mental illness and may or may not be in receipt of income supplement for such a role. Specifically this study has a focus on the experience of the carer when negotiating care needs or admission with a mental health service. Method A qualitative descriptive approach was used with five focus groups as a means of data collection. Ethical approval for the study was obtained from both the hospital and universities ethics committees. Results Key themes identified using thematic analysis are presented in the words of the carers and include: "Juggling" between services; We became assertive and If only they would listen. Often carers were advocating for their relative and needing to negotiate between services (police and crisis assessment teams) to gain any form of assessment or intervention. Carers often spent a great deal of time on the phone to services only to be told that their relative was "not sick enough" to access care or that no response would occur without another service also being involved. Discussion Our research highlights the importance of working collaboratively with informal carers and acknowledging their valuable contribution to the care of their relatives with a severe mental illness. It is very important that adequate support is given to carers especially during the period when their relatives are experiencing a crisis. An understanding of their experiences ensures a more family focused approach towards care. The study findings should enable the healthcare team to focus attention on the issues which are most pertinent to carers. Nurses are advocates not only for the patient but also for their families. Relevance statement Carers supporting a person who experiences mental illness can often find themselves in

The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers' hours of care and expenditures.

PubMed

Rowland, Christine; Hanratty, Barbara; Pilling, Mark; van den Berg, Bernard; Grande, Gunn

2017-04-01

Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients' preferences and government policy. However, the value of care-givers' contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers' contribution to end-of-life care. The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care. A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1-16 May 2015. Data were collected on decedents' health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information. In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent's life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent's life. Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers' contributions.

A carer burden and stigma in schizophrenia and affective disorders: Experiences from Sri Lanka.

PubMed

Fernando, Sunera M; Deane, Frank P; McLeod, Hamish J; Davis, Esther L

2017-04-01

Stigma compounds the burden experienced by family members of those with a mental illness. This study aimed to examine burden experienced by carers of people with schizophrenia or affective disorders and to explore the relationship between carer burden and stigma. A cross sectional descriptive study was conducted with patient-carer dyads involving 67 patients diagnosed with schizophrenia and 51 diagnosed with affective disorder. Carers completed the Zarit Burden Interview (short version) and stigma was measured using the Stigma Scale and the Internalised Stigma of Mental Illness Scale. Carer burden was significantly higher for schizophrenia than affective disorders. Female carers experienced significantly higher burden than male carers. Diagnosis, gender of carer and stigma predicted 22% of the variance in carer burden, with gender identified as a significant predictor. Reducing stigma related to disclosure of mental illness in carers has the potential to reduce carer burden. Copyright © 2017 Elsevier B.V. All rights reserved.

Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources

PubMed Central

2014-01-01

Background Approximately 10% of the UK population have an unpaid caring role for a family member or friend. Many of these carers make a significant contribution to supporting patients at the end of life. Carers can experience poor physical and psychosocial wellbeing, yet they remain largely unsupported by health and social care services. Despite initiatives for general practices to identify carers and their needs, many remain unidentified. Neither are carers self-identifying and requesting support. This study set out to explore the barriers to, and consider strategies for, identifying carers in primary care. Methods We integrated findings from three data sources – a review of the caregiving literature; a workshop with researchers who have undertaken research with those caring at the end of life, and focus groups with carers and health professionals. Results Three categories of barrier emerged. 1) Taking on the care of another person is often a gradual process, carers did not immediately identify with being a ‘carer’ – preferring to think of themselves in relational terms to the patient e.g. spouse, sibling, son or daughter. Often it was health and social care professionals who encouraged carers to consider themselves as an unpaid carer. 2) As the cared-for person’s condition deteriorated, the caring role often became all-encompassing so that carers were managing competing demands, and felt unable to look after their own needs as well as those of the cared-for person. 3) There was ambiguity about the legitimacy of carer needs and about the role of the primary health care team in supporting carers, from both the perspective of the carers and the health professionals. GPs were thought to be reactive rather than proactive which discouraged carers from asking for help. Conclusions The needs of carers have to be legitimised to ensure primary care staff are proactive in their approach and carers are empowered to utilise the support available. Strategies to

Foster carer experience in Spain: Analysis of the vulnerabilities of a permanent model.

PubMed

López López, Mónica; Del Valle, Jorge F

2016-05-01

The voice of foster families is a valuable tool in the development and improvement of foster family services. Regularly evaluating the satisfaction of foster carers can facilitate the early identification of a range of problems that might pose a risk to the placement. This article reports the experience of 200 Spanish foster families (kinship and non-kinship) with foster services in relation to motivation for becoming foster carers, sources of stress and reward, satisfaction with the services and needs. Semi-structured interviews were performed. The aims of the research are principally of a descriptive character, so each group of variables was examined using frequency analysis. The foster carers interviewed demonstrated a high degree of satisfaction with the foster programs, although some areas seem more problematic, such as financial compensation, information provided about the fostered child, contact with the birth family and the sensitivity of professionals. This study reveals several differences with regard to international literature, that are related to particularities of the Spanish child care system. The results may be extremely useful for the implementation of policy changes which could contribute to raised levels of satisfaction for the foster carers, and increased effectiveness of the programs.

Long-term Care Insurance and Carers' Labor Supply - A Structural Model.

PubMed

Geyer, Johannes; Korfhage, Thorben

2015-09-01

In Germany, individuals in need of long-term care receive support through benefits of the long-term care insurance. A central goal of the insurance is to support informal care provided by family members. Care recipients can choose between benefits in kind (formal home care services) and benefits in cash. From a budgetary perspective, family care is often considered a cost-saving alternative to formal home care and to stationary nursing care. However, the opportunity costs resulting from reduced labor supply of the carer are often overlooked. We focus on the labor supply decision of family carers and the incentives set by the long-term care insurance. We estimate a structural model of labor supply and the choice of benefits of family carers. We find that benefits in kind have small positive effects on labor supply. Labor supply elasticities of cash benefits are larger and negative. If both types of benefits increase, negative labor supply effects are offset to a large extent. However, the average effect is significantly negative. Copyright © 2015 John Wiley & Sons, Ltd.

Supporting family carers through telephone-mediated group programs: opportunities for gerontological social workers.

PubMed

Shanley, Chris

2008-01-01

Telephone-mediated group programs are an important but under-utilized medium for reaching frail or disabled older persons' family carers who are in need of support. The primary purpose and style of group programs can range across a broad spectrum-encompassing educational, supportive and therapeutic types. Gerontological social workers are the members of the multidisciplinary care team whose training, experience and supervision makes them most suitable for facilitating this broad range of group types. Drawing on the experience of training a number of group facilitators, this article provides suggestions for social workers contemplating the use of telephone-mediated groups and highlights groupwork skills peculiar to conducting group programs via the telephone.

Carer Characteristics and Health, Wellbeing and Employment Outcomes of Older Australian Baby Boomers.

PubMed

O'Loughlin, Kate; Loh, Vanessa; Kendig, Hal

2017-09-01

Supporting caregivers and enabling continued workforce participation are central strategies in Australia's response to an ageing population, however these strategies have potential disadvantages for carers, particularly women, including reduced workforce participation and retirement income, and poorer health status. This paper explores the nexus between paid work and caregiving for Australia's baby boomer cohort as this group faces unprecedented pressures to manage paid work alongside caring longer and more intensively for family members, including grandchildren. A sample of 1261 men and women aged 60 to 64 completed the 2011-12 Life Histories and Health survey, a sub-study of the New South Wales 45 and Up Study. The survey collected data on sociodemographic, psychosocial, life history and health-related variables including caregiving and employment status. Around a third (32.5%) of the sample (52.2% female) were involved in some type of caregiving at the time. Compared to non-carers, carers reported lower workforce participation (45.8% versus 54.7% for non-carers) as well as poorer health, more mobility difficulties, lower quality of life and lower self-rated SES. Carers who also cared for grandchildren were more likely to be in part-time or no paid work compared to other carers. Working carers tended to be more highly educated, have fewer mobility difficulties, better self-rated health and higher SES than non-working carers. Male carers were more likely than female carers to be in full-time or no paid work. Results indicate that reduced workforce participation and health status of caregivers varies by gender and type of caregiving. Policy reforms are recommended to mitigate these adverse consequences on those providing care, their families, employers and the community.

Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial

PubMed Central

Barber, Julie; Rapaport, Penny; Knapp, Martin; Griffin, Mark; King, Derek; Mummery, Cath; Walker, Zuzana; Hoe, Juanita; Sampson, Elizabeth L; Cooper, Claudia

2013-01-01

Objective To assess whether a manual based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia. Design Randomised, parallel group, superiority trial. Setting Three mental health community services and one neurological outpatient dementia service in London and Essex, UK. Participants 260 carers of family members with dementia. Intervention A manual based coping intervention comprising eight sessions and delivered by supervised psychology graduates to carers of family members with dementia. The programme consisted of psychoeducation about dementia, carers’ stress, and where to get emotional support; understanding behaviours of the family member being cared for, and behavioural management techniques; changing unhelpful thoughts; promoting acceptance; assertive communication; relaxation; planning for the future; increasing pleasant activities; and maintaining skills learnt. Carers practised these techniques at home, using the manual and relaxation CDs. Main outcome measures Affective symptoms (hospital anxiety and depression total score) at four and eight months. Secondary outcomes were depression and anxiety caseness on the hospital anxiety and depression scale; quality of life of both the carer (health status questionnaire, mental health) and the recipient of care (quality of life-Alzheimer’s disease); and potentially abusive behaviour by the carer towards the recipient of care (modified conflict tactics scale). Results 260 carers were recruited; 173 were randomised to the intervention and 87 to treatment as usual. Mean total scores on the hospital anxiety and depression scale were lower in the intervention group than in the treatment as usual group over the eight month evaluation period: adjusted difference in means −1.80 points (95% confidence interval −3.29 to −0.31; P=0.02) and absolute difference in means −2.0 points. Carers in the intervention group were less likely to

Mental health and foster carer training

PubMed Central

Minnis, H; Pelosi, A; Knapp, M; Dunn, J

2001-01-01

AIMS—To evaluate the impact of training foster carers on children's emotional and behavioural functioning.
METHODS—In a randomised controlled trial in 17 Scottish local council areas, with immediate and nine month follow up, 182 children and their foster families were randomly allocated to either standard services alone or standard services plus extra training for foster carers on communication and attachment. Main outcome measures were child psychopathology, attachment disorder, self esteem, and cost of foster care.
RESULTS—Over 60% of children had measurable psychopathology at baseline. The training was perceived as beneficial by participants. Scores for parent reported psychopathology and attachment disorders decreased by around 5%, self esteem increased by 2%, and costs by 22% in the intervention group. Results were non-significant.
CONCLUSIONS—Despite being well received by foster carers, the training was not sufficient to make a useful impact on the high level of psychopathology. This group may warrant more intensive interventions.

 PMID:11259226

Improving the interface between informal carers and formal health and social services: a qualitative study.

PubMed

McPherson, K M; Kayes, N K; Moloczij, N; Cummins, C

2014-03-01

Reports about the impact of caring vary widely, but a consistent finding is that the role is influenced (for better or worse) by how formal services respond to, and work with informal carers and of course the cared for person. We aimed to explore the connection between informal and formal cares and identify how a positive connection or interface might be developed and maintained. We undertook a qualitative descriptive study with focus groups and individual interviews with informal carers, formal care service providers and representatives from carer advocacy groups. Content analysis was used to identify key factors impacting on the interface between informal and formal carers and propose specific recommendations for service development. Community setting including urban and rural areas of New Zealand. Seventy participants (the majority informal carers) took part in 13 focus groups and 22 individual interviews. Four key themes were derived: Quality of care for the care recipient; Knowledge exchange (valuing carer perspectives); One size does not fit all (creating flexible services); and A constant struggle (reducing the burden services add). An optimum interface to address these key areas was proposed. In addition to ensuring quality care for the care recipient, specific structures and processes to support a more positive interface appear warranted if informal carers and services are to work well together. An approach recognising the caring context and carer expertise may decrease the additional burden services contribute, and reduce conflicting information and resultant confusion and/or frustration many carers experience. Copyright © 2013 Elsevier Ltd. All rights reserved.

Coping strategies as mediators of the effect of the START (strategies for RelaTives) intervention on psychological morbidity for family carers of people with dementia in a randomised controlled trial.

PubMed

Li, Ryan; Cooper, Claudia; Barber, Julie; Rapaport, Penny; Griffin, Mark; Livingston, Gill

2014-10-01

Family carers of people with dementia frequently become depressed or anxious. In observational studies, more emotion-focused and less dysfunctional coping predict fewer psychological symptoms, but no randomised controlled trial (RCT) has directly investigated emotion-focused coping as mediator of effectiveness of a successful psychological intervention. We hypothesised that emotion-focused coping would mediate the START psychological intervention׳s effects in an RCT. We tested whether mediated effects were moderated by severity of baseline symptoms. 260 family carers from NHS dementia services were randomised to START (manualised coping skills intervention), or treatment-as-usual (TAU). Blinded raters administered the Hospital Anxiety and Depression Scale (HADS-T) and Brief COPE inventory at baseline, 4 and 8 months. HADS-T improved in the intervention group when compared to TAU at all levels of psychological distress. We tested whether coping was a mediator and for moderated mediation, and (post-hoc) subgroup treatment effects on coping. Data were available for 187 carers (71.9%) for the mediation analysis. The reduced HADS-T score in the intervention group was mediated by increased emotion-focused coping only among carers with higher (16+) baseline HADS-T scores (mediated effect=-0.63 [-1.11, -0.15]; proportion of overall effect=33% [3%, 64%]). We did not measure plausible psychosocial treatment mechanisms other than coping. START benefited family carers both in preventing and treating psychological morbidity, through different mechanisms of action. The most psychologically distressed carers increased their emotion-focused coping and did not decrease their dysfunctional coping, while others benefited but not through this mechanism. Copyright © 2014 Elsevier B.V. All rights reserved.

Patients' and carers' perception of needs in a Polish sample.

PubMed

Cialkowska-Kuzminska, Magdalena; Misiak, Blazej; Kiejna, Andrzej

2014-03-01

The assessment of patients' needs is an essential element of psychiatric health care planning and evaluation. Not much interest has been paid to the study of psychiatric patients' needs in Poland so far. To assess the relation between inpatients' and their key carers' perception of needs in a Polish sample. Out of 324 inpatients invited to take part in the study, 60 sets were finally included. Patients and their carers were examined by means of CANSAS to rate patients' and carers' perception of needs. The mean number of general needs indicated by patients themselves was 7.11 (± 2.98), and those indicated by carers equalled 9.53 (± 3.92). The more unmet needs identified by the patient, the more met and general needs of the patient identified by their carer (r = .27, p = .03; r = .38, p = .02, respectively). The more general needs perceived by the patient themself, the higher the indicator of unmet and general needs scored by their carer (r = .32, p = .01; r = .39, p = .001, respectively). There is a significant association between the inpatients' and their carers' perception of needs. Patients' perspective should serve as a high priority in developing treatment plans.

Disciplinary power and the process of training informal carers on stroke units.

PubMed

Sadler, Euan; Hawkins, Rebecca; Clarke, David J; Godfrey, Mary; Dickerson, Josie; McKevitt, Christopher

2018-01-01

This article examines the process of training informal carers on stroke units using the lens of power. Care is usually assumed as a kinship obligation but the state has long had an interest in framing the carer and caring work. Training carers in healthcare settings raises questions about the power of the state and healthcare professionals as its agents to shape expectations and practices related to the caring role. Drawing on Foucault's notion of disciplinary power, we show how disciplinary forms of power exercised in interactions between healthcare professionals and carers shape the engagement and resistance of carers in the process of training. Interview and observational field note extracts are drawn from a multi-sited study of a training programme on stroke units targeting family carers of people with stroke to consider the consequences of subjecting caring to this intervention. We found that the process of training informal carers on stroke units was not simply a matter of transferring skills from professional to lay person, but entailed disciplinary forms of power intended to shape the conduct of the carer. We interrogate the extent to which a specific kind of carer is produced through such an approach, and the wider implications for the participation of carers in training in healthcare settings and the empowerment of carers. © 2017 Foundation for the Sociology of Health & Illness.

Supporting Family Carers Through Telephone-Mediated Group Programs: Opportunities For Gerontological Social Workers.

PubMed

Shanley, Chris

2008-01-01

Telephone-mediated group programs are an important but under-utilized medium for reaching frail or disabled older persons' family carers who are in need of support. The primary purpose and style of group programs can range across a broad spectrum–encompassing educational, supportive and therapeutic types. Gerontological social workers are the members of the multidisciplinary care team whose training, experience and supervision makes them most suitable for facilitating this broad range of group types. Drawing on the experience of training a number of group facilitators, this article provides suggestions for social workers contemplating the use of telephone-mediated groups and highlights groupwork skills peculiar to conducting group programs via the telephone.

[The use of volunteers to support family carers of dementia patients: results of a prospective longitudinal study investigating expectations towards and experience with training and professional support].

PubMed

Grässel, E; Schirmer, B

2006-06-01

Caring for a dementia patient in the family often turns out to be a full-time job for family carers. So home visitors-for example volunteers spending time with the patient and thus offering some respite to the family-may be a very important aspect of stabilizing home care. This study investigates the expectations of volunteers concerning their training and their future voluntary work, as well as their visiting experiences, and their reasons for stopping the voluntary work. A total of 40 volunteers were interviewed three times over a 18 month period. The interviews were based on interview guidelines and were problem-centered. The interviewees' replies were subject to a summarizing qualitative content analysis. Of the study participants 85% were women, 48% had previously been family carers themselves, and 50% had previous experience of other voluntary work. Their wish "to do something useful" and "to learn more about dementia" were the main reasons for participation in voluntary work. The interviewed persons tend to learn most about communicating with dementia patients through case studies and practical exercises. Work pressures or restarting employment were the most common reasons to stop the voluntary work. Only if the volunteers are supported by professionals--particularly in the form of a contact person who is always available when problems occur--can this type of respite for family carers be maintained.

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.

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

PubMed

Glendinning, Caroline; Mitchell, Wendy; Brooks, Jenni

2015-01-01

Carers play an ambiguous role within the personalisation paradigm currently shaping adult social care practice in England. Although carers have rights to assessments and support in their own right, these rights sit uneasily alongside the practices of assessment, support planning and personal budget (PB) allocation for older and disabled people. This paper reports how 14 dyads of older and learning disabled people with cognitive and/or communication impairments and their carers viewed the roles - desired and actual - played by carers in PBs. Interviews with carers and with older and disabled people were conducted during 2012 as part of a wider study into carers' roles in assessment, support planning and managing PBs. The interviews complemented a survey of reported practice in two English regions - interviews with adult social care services senior managers and focus groups with front-line care managers. Talking Mats(©) were used to support interviews with some service users. Interviews were transcribed and data analysed using the Framework approach. The interviews indicated that carers played important roles in service users' assessments and support planning, but were less likely to report receiving assessments or support of their own. While carers had the potential to benefit from PBs and support arrangements for service users, this did not reflect practice that aimed to enhance choice and control for carers. The paper draws on Twigg's typology of service conceptualisations of family carers and concludes that, despite the important social rights won by carers in England, current practice continues to regard carers primarily as a resource or a co-worker, rather than a co-client. © 2014 John Wiley & Sons Ltd.

A pharmacy carer support service: obtaining new insight into carers in the community.

PubMed

McMillan, Sara S; King, Michelle A; Stapleton, Helen; Sav, Adem; Kelly, Fiona; Wheeler, Amanda J

2018-05-06

Unpaid carers have many and varied responsibilities in society, which can include medication management for the person they support. However, the potential for Australian community pharmacies to better assist carers is relatively unexplored. This mixed-methods study investigated the acceptability of a local carer support service by trained community pharmacy staff, including issues regarding the implementation and impact of this service. Staff from 11 community pharmacies in South East Queensland, Australia, were trained to deliver a six-step carer support service between September 2016 and March 2017. Pharmacies were supported by a carer and pharmacist mentor pair and asked to recruit up to six carers each. Evaluations of staff training were descriptively analysed. Semi-structured interviews were undertaken with pharmacy staff, and interview transcripts were analysed thematically. Staff training evaluations were positive; participants acquired new information about carers and rated the service highly in terms of its importance within the pharmacy setting. Feedback was obtained on how to improve the training, such as further opportunities for role-play. Seven staff members were interviewed, and data analysis revealed two main themes: (1) implementation of the carer support service and (2) perceived impact on pharmacy staff. Positive attitudes towards recognising and supporting carers, and training and mentoring were identified with community pharmacies viewed as a suitable place for delivering this new service. New insights into the impact of caring were widely reported, which staff had not appreciated from previous carer interactions. Structural issues, including space and time pressures, and a lack of awareness about the types of support currently available to carers were emphasised. Pharmacy staff are well positioned to support carers. Engaging carers in conversation to better understand their needs is a small step with potential for big gains, including a more

People into Employment: supporting people with disabilities and carers into work.

PubMed

Arksey, Hilary

2003-05-01

Carers and people with disabilities are two disadvantaged groups at risk of social exclusion. Work is an important route to social inclusion, but carers and people with disabilities are under-represented in the work force. The present paper reports key findings from a new study that evaluated People into Employment (PIE), a pilot employment project in the north-east of England designed to support people with disabilities, carers and former carers in gaining mainstream work. The study aimed to identify what clients, partner agencies and employers perceived to be PIE's most important services, its strengths and areas where there was scope for further development. The study collected quantitative and qualitative data at the mid-point and at the end of the project through two questionnaire surveys, and interviews with PIE clients, the project development officer, partner agencies and employers. Drawing on the 'pathway model', the findings show that PIE's interventions included mobilising, matching, mediating and supporting activities. Key ingredients in PIE's success include: tailor-made job-search activities and training; adjusting the pace at which people move towards sustained employment; recognising and responding to the differing needs of people with disabilities, carers and former carers; confidence boosting; accompanying clients to job interviews; good job matching; and ongoing practical and emotional support for both clients and employers. Rudimentary calculations suggest that the cost per job to the project is less than the cost per job for large national projects. Overall, these findings illustrate how access to employment via flexible job-search services geared up to the local labour market can successfully promote social inclusion for carers and people with disabilities.

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…

The unique experience of home for parents and carers of children with disabilities.

PubMed

Aplin, Tammy; Thornton, Heloise; Gustafsson, Louise

2017-01-24

The aim of this paper was to investigate the experience of home for parents and carers of children with disabilities in Australia. Data for this qualitative study were gathered using semi-structured interviews with four families living in their own homes. An inductive thematic analysis revealed two main themes. The first was titled 'Aspects making everyday life easier' explored the aspects of the home environment that facilitated home life for the child, including access to transport, services, family and home modifications. The second theme 'Decisions and efforts to create opportunities for the child' emphasized the efforts made by parents and carers to promote their child's independence and participation including a strong consideration for their children's future needs. The study indicated that the location of home, appropriate home modifications and planning for the future defined the experience of home for parents and carers. These findings identify some important considerations for occupational therapists when providing services in the homes of families with children who have a disability.

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

PubMed

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

2013-09-01

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

Primary caregivers' satisfaction with clinicians' response to them as informal carers of young people with first-episode psychosis: a qualitative study.

PubMed

McCann, Terence V; Lubman, Dan I; Clark, Eileen

2012-01-01

To explore first-time primary caregivers' experience of the way mental health nurses and other mental health clinicians respond to them as carers of young people with first-episode psychosis. Caregivers have a key role in supporting family members/relatives with mental illness, but their contribution is undervalued frequently by mental health nurses and other mental health clinicians. Design.  Qualitative interpretative phenomenological analysis. A qualitative interpretative design was undertaken, using semi-structured, audio-recorded interviews. Twenty primary caregivers were recruited through Orygen Youth Health, a first-episode psychosis centre in Melbourne. Interpretative phenomenological analysis was used to identify themes in the data. Two competing themes were identified in the data, highlighting caregivers' contrasting experience with mental health nurses and other mental health clinicians. First, most clinical staff were approachable and supportive. Second, several carers felt their contribution was undervalued by some clinical staff. This was as a consequence of being excluded from clinical deliberations because of clinical staffs' concerns and young people's requests about maintaining confidentiality regarding treatment, as well as carers feeling their role was not taken seriously by clinical staff. First-time primary carers have positive and negative experiences with first-episode psychosis mental health nurses and other clinicians, and these competing events are interrelated. Experiences are affected directly by the manner they are treated by clinical staff and this may, in turn, affect carers' commitment to caring, the way they engage with clinical staff on subsequent occasions and towards the first-episode psychosis service generally. Greater appreciation is needed of the contribution, experience and difficulties caregivers encounter in their role and in engaging with mental health nurses and other clinicians. Additional training is required for

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

Carers' needs in advanced heart failure: A systematic narrative review.

PubMed

Doherty, Leanne C; Fitzsimons, Donna; McIlfatrick, Sonja J

2016-06-01

Informal caregivers play a pivotal role in the care of people living with advanced heart failure, however, carers' needs have not been clearly identified. The aim of this study is to explore the evidence on palliative care needs expressed by carers of people with heart failure. Five electronic databases (CINAHL PLUS, EMBASE, Medline, PsychInfo and SCOPUS) were systematically searched and articles published January 2003-June 2014 with a qualitative methodology focusing on the palliative care needs of carers of people living with heart failure were included. Data was systematically extracted from 15 articles using an inductive methodology for the thematic analysis. Ten broad categories emerged from which three key areas of support needs were identified; psychosocial support to maintain a sense of normalcy; support with daily living; support navigating the healthcare system. The articles were predominantly published in the UK and USA with a total sample size across all articles of 270, the majority of which were older female spouses. Results included a combination of carers, patients and professionals thoughts, however data was extracted for carers only. Carer's needs initiate when the patient is diagnosed and continue throughout the disease into bereavement. These needs are continuously prioritised and reprioritised depending on the patients' medical stability. A holistic approach is needed to support these carers, incorporating heart failure and palliative care specialties. Further research is warranted to explore different methods of delivering support and information and to evaluate whether these reduce carer burden. © The European Society of Cardiology 2015.

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

PubMed

Blackburn, Clare; Read, Janet; Hughes, Nathan

2005-05-01

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

An investigation of models of illness in carers of schizophrenia patients using the Illness Perception Questionnaire.

PubMed

Barrowclough, C; Lobban, F; Hatton, C; Quinn, J

2001-11-01

Although carers' reactions to schizophrenic illness in a close family member may have important implications for the patient and for themselves, little is known of factors that influence the way carers respond. In the area of physical health problems, people's models of their illness or illness representations have been found to be related to the ways they react and cope with their illness. This study examines the use of a modified form of the Illness Perception Questionnaire (IPQ) to investigate illness models in a sample of carers of schizophrenia patients. Forty-seven carers participated. The psychometric properties of the modified IPQ were examined, and a number of carer and patient outcomes were investigated in relation to carer scores on the illness identity, consequences, control-cure and timeline subscales of the modified IPQ. These outcomes included measures of carer distress and burden, expressed emotion dimensions, and patient functioning. The modified IPQ was found to be a reliable measure of carers' perceptions of schizophrenia. Carer functioning, the patient-carer relationship and patient illness characteristics were associated with different dimensions of illness perceptions. The findings support the proposal that carer cognitive representations of the illness may have important implications for both carer and patient outcomes in schizophrenia.

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

PubMed

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

2014-04-01

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

Balancing satisfaction and stress: carer burden among White and British Asian Indian carers of stroke survivors.

PubMed

Katbamna, Savita; Manning, Lisa; Mistri, Amit; Johnson, Mark; Robinson, Thompson

2017-08-01

This paper presents the findings of a qualitative study exploring White and British Indian informal stroke carers' experiences of caring, factors contributing to their stress, and strategies used to overcome stress. A qualitative approach involving in-depth interviews was used to explore informal carers' experiences of caring for stroke survivors and the stress of caring at one and three to six months from the onset of stroke. Interviewers bilingual in English and Gujarati or Punjabi conducted interviews with carers. Socio-demographic data of carers and stroke survivors were collected at one, and three to six months by dedicated stroke research nurses. A total of 37 interviews with carers caring for stroke survivors with a wide range of physical and mental impairments were completed. A majority of carers had assumed the task of caring within a few weeks of the stroke. Irrespective of ethnicity, carers' emotional and physical well-being was undermined by the uncertainty and unpredictability of caring for stroke survivors, and meeting their expectations and needs. The strain of managing social obligations to care was common to all carers irrespective of gender and ethnicity, but the higher levels of anxiety and depression reported by Indian British female carers appeared to stem from the carers' pre-existing physical ailments, their cultural and religious beliefs, and household arrangements. Carers' strain in extended households was exacerbated by the additional responsibility of caring for other dependent relatives. Since the role of carers is clearly indispensable in the successful rehabilitation of survivors, it is vital to ensure that their well-being is not undermined by a lack of information and training, and that their need for professional support is prioritised.

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

PubMed

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

2016-08-19

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. 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. 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. 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. 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. Providing a rationale for long-term emollient use and choice of emollients could help improve adherence

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

PubMed

Samsi, Kritika; Manthorpe, Jill

2013-06-01

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

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

PubMed

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

2016-10-01

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

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.

The impact of volunteering on the volunteer: findings from a peer support programme for family carers of people with dementia.

PubMed

Charlesworth, Georgina; Sinclair, James B; Brooks, Alice; Sullivan, Theresa; Ahmad, Shaheen; Poland, Fiona

2017-03-01

With an ageing population, there are increasing numbers of experienced family carers (FCs) who could provide peer support to newer carers in a similar care situation. The aims of this paper are to: (i) use a cross-sectional study design to compare characteristics of volunteers and recipients of a peer support programme for FCs of people with dementia, in terms of demographic background, social networks and psychological well-being; and (ii) use a longitudinal study design to explore the overall impact of the programme on the volunteers in terms of psychological well-being. Data were collected from programmes run in Norfolk, Northamptonshire, Berkshire and four London boroughs between October 2009 and March 2013. The volunteer role entailed empathic listening and encouragement over a 10-month period. Both carer support volunteers (N = 87) and recipient FCs (N = 109) provided baseline demographic information. Data on social networks, personal growth, self-efficacy, service use and well-being (SF-12; EuroQol Visual Analogue Scale; Hospital Anxiety and Depression Scale; Control, Autonomy, Self-Realisation, Pleasure-19) were collected prior to the start of the intervention (N = 43) and at either 3- to 5 month or 10 month follow-up (N = 21). Volunteers were more likely than recipients of support to be female and to have cared for a parent/grandparent rather than spouse. Volunteers were also more psychologically well than support recipients in terms of personal growth, depression and perceived well-being. The longitudinal analysis identified small but significant declines in personal growth and autonomy and a positive correlation between the volunteers' duration of involvement and perceived well-being. These findings suggest that carers who volunteer for emotional support roles are resilient and are at little psychological risk from volunteering. © 2016 John Wiley & Sons Ltd.

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

PubMed

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

2013-05-01

The health of a carer is a key factor which can affect the well-being of the child with disabilities for whom they care. In low-income countries, many carers of children with disabilities contend with poverty, limited public services and lack assistive devices. In these situations caregiving may require more physical work than in high-income countries and so carry greater risk of physical injury or health problems. There is some evidence that poverty and limited access to health care and equipment may affect the physical health of those who care for children with disabilities. This study seeks to understand this relationship more clearly. A mixed methods study design was used to identify the potential physical health effects of caring for a child with moderate-severe motor impairments in Kilifi, Kenya. Qualitative data from in-depth interviews were thematically analysed and triangulated with data collected during structured physiotherapy assessment. Carers commonly reported chronic spinal pain of moderate to severe intensity, which affected essential activities. However, carers differed in how they perceived their physical health to be affected by caregiving, also reporting positive benefits or denying detrimental effects. Carers focussed on support in two key areas; the provision of simple equipment and support for their children to physically access and attend school. Carers of children with moderate-severe motor impairments live with their own physical health challenges. While routine assessments lead to diagnosis of simple musculoskeletal pain syndromes, the overall health status and situation of carers may be more complex. As a consequence, the role of rehabilitation therapists may need to be expanded to effectively evaluate and support carers' health needs. The provision of equipment to improve their child's mobility, respite care or transport to enable school attendance is likely to be helpful to carers and children alike. © 2012 Blackwell Publishing Ltd.

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

PubMed Central

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

2013-01-01

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

Young carer awareness, identification and referral.

PubMed

Sprung, Sally; Laing, Michelle

2017-08-02

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

Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial.

PubMed

Aoun, Samar; Deas, Kathleen; Toye, Chris; Ewing, Gail; Grande, Gunn; Stajduhar, Kelli

2015-06-01

The Carer Support Needs Assessment Tool encompasses the physical, psychological, social, practical, financial, and spiritual support needs that government policies in many countries emphasize should be assessed and addressed for family caregivers during end-of-life care. To describe the experience of family caregivers of terminally ill people of the Carer Support Needs Assessment Tool intervention in home-based palliative care. This study was conducted during 2012-2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. All 233 family caregivers receiving the Carer Support Needs Assessment Tool intervention provided feedback on their experiences via brief end-of-trial semi-structured telephone interviews. Data were subjected to a thematic analysis. The overwhelming majority reported finding the Carer Support Needs Assessment Tool assessment process straightforward and easy. Four key themes were identified: (1) the practicality and usefulness of the systematic assessment; (2) emotional responses to caregiver reflection; (3) validation, reassurance, and empowerment; and (4) accessing support and how this was experienced. Family caregivers appreciated the value of the Carer Support Needs Assessment Tool intervention in engaging them in conversations about their needs, priorities, and solutions. The Carer Support Needs Assessment Tool presented a simple, yet potentially effective intervention to help palliative care providers systematically assess and address family caregivers' needs. The Carer Support Needs Assessment Tool provided a formal structure to facilitate discussions with family caregivers to enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services for family caregivers, ensuring that new or improved services are designed to meet the explicit needs of family caregivers. © The Author(s) 2015.

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

PubMed

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

2016-05-04

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

The impact of befriending and peer support on family carers of people living with dementia: A mixed methods study.

PubMed

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

Volunteer led befriending and peer support is provided to a wide range of people with varying needs. Despite large numbers of such schemes for carers of people with dementia, there is little evidence for any benefits they may offer. The aim of this research was to investigate the impact of befriending and peer support on carers of people with dementia and to explore their experiences of receiving the interventions using a mixed methods approach. Nineteen carers of people with dementia were recruited from befriending and peer support services. Carers completed the Hospital Anxiety and Depression Scale (HADS), the Multidimensional Scale of Perceived Social Support (MSPSS) and UCLA Loneliness Scale at baseline, three months and six months. Of the 16 carers who completed the quantitative phase, eight took part in depth semi-structured interviews. A statistically significant increase in perceived social support from a significant other between baseline and three months was found (Z = 2.487, p = 0.013). Qualitative findings showed befriending and peer support to be important sources of emotional and social support for carers, which was facilitated by the volunteers' experiential similarity. Volunteer led befriending and peer support offers carers of people with dementia emotional and social support which enables them to cope better with challenges and continue caring. This has important implications for potentially reducing breakdowns in carer mental and physical health. Future research should explore whether these finding are replicable in other locations and in more diverse populations. Copyright © 2018 Elsevier B.V. All rights reserved.

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

PubMed

Larkin, Mary

2015-01-01

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

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

PubMed

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

2016-01-01

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

Information needs of adolescent and young adult cancer patients and their parent-carers.

PubMed

McCarthy, Maria C; McNeil, Robyn; Drew, Sarah; Orme, Lisa; Sawyer, Susan M

2018-05-01

This study aimed to explore health-related information needs of adolescent and young adults (AYAs) and their parent-carers and to examine demographic and clinical variables associated with unmet information needs, including patient activation. In a national cross-sectional study, 196 Australian AYAs diagnosed with cancer between 15 and 25 years and within 24 months of diagnosis and 204 parent-carers reported on total and unmet needs for cancer and health-related information. Fifty-one percent of AYAs were male, 81% had completed treatment and 86% were treated in adult hospitals. AYAs and parents reported high levels of total need for information. The mean number of unmet needs was 5.63 and 6.82 for AYAs and parents, respectively. AYAs reported the highest unmet needs in relation to their cancer (e.g. late effects and cancer recurrence, and having children in the future). The highest unmet parent information needs were related to medical information about their child as well as information on financial issues for their children and themselves. Unmet information need was associated with psychological distress (posttraumatic stress symptoms) for AYAs and parents. Patient activation was negatively associated with unmet information needs for AYAs. Demographic and treatment variables were not significantly associated with information needs. These findings indicate the importance of information needs for AYAs and their carers. The association between patient activation and information needs suggests that promoting young people's engagement with healthcare is a key opportunity within AYA care. Parent information needs and associated emotional distress additionally highlight the importance of family-centered care.

Death from cancer at home: the carers' perspective.

PubMed

Jones, R V; Hansford, J; Fiske, J

1993-01-23

To collect information from principal carers of people who had died at home with cancer; to identify areas of support which need improvement. Semistructured interviews with carers two to four months after the death. 38 general practices in the Exeter, Torbay, and Plymouth health districts. 207 carers. Services received by carers and quality of support. 161 of 207 patients were aged 60 or over. 88 carers were aged under 60, 110 were 60-80, and 9 were > 80. Carers had difficulty in getting urgent professional help in only 15 out of 177 cases. 124 carers were not given advice on financial help and 174 were not told of support available from local charities. Although pain was well controlled, 25% of patients had no relief of other symptoms. Overall, 150 carers considered the support excellent, 45 good, 8 moderate, 2 poor, and 2 had no comment. Although care has improved in recent years, health professionals need to give carers more advice about help available outside health services. Domestic help was often needed earlier. Better appreciation of carers' problems is needed.

Key Working for Families with Young Disabled Children

PubMed Central

Carter, Bernie; Thomas, Megan

2011-01-01

For families with a disabled child, the usual challenges of family life can be further complicated by the need to access a wide range of services provided by a plethora of professionals and agencies. Key working aims to support children and their families in navigating these complexities ensuring easy access to relevant, high quality, and coordinated care. The aim of this paper is to explore the key worker role in relation to “being a key worker” and “having a key worker”. The data within this paper draw on a larger evaluation study of the Blackpool Early Support Pilot Programme. The qualitative study used an appreciative and narrative approach and utilised mixed methods (interviews, surveys and a nominal group workshop). Data were collected from 43 participants (parents, key workers, and other stakeholders). All stakeholders who had been involved with the service were invited to participate. In the paper we present and discuss the ways in which key working made a difference to the lives of children and their families. We also consider how key working transformed the perspectives of the key workers creating a deeper and richer understanding of family lives and the ways in which other disciplines and agencies worked. Key working contributed to the shift to a much more family-centred approach, and enhanced communication and information sharing between professionals and agencies improved. This resulted in families feeling more informed. Key workers acted in an entrepreneurial fashion, forging new relationships with families and between families and other stakeholders. Parents of young disabled children and their service providers benefited from key working. Much of the benefit accrued came from strong, relational, and social-professional networking which facilitated the embedding of new ways of working into everyday practice. Using an appreciative inquiry approach provided an effective and relevant way of engaging with parents, professionals, and other

Community occupational therapy for people with dementia and family carers (COTiD-UK) versus treatment as usual (Valuing Active Life in Dementia [VALID] programme): study protocol for a randomised controlled trial.

PubMed

Wenborn, Jennifer; Hynes, Sinéad; Moniz-Cook, Esme; Mountain, Gail; Poland, Fiona; King, Michael; Omar, Rumana; Morris, Steven; Vernooij-Dassen, Myrra; Challis, David; Michie, Susan; Russell, Ian; Sackley, Catherine; Graff, Maud; O'Keeffe, Aidan; Crellin, Nadia; Orrell, Martin

2016-02-03

A community-based occupational therapy intervention for people with mild to moderate dementia and their family carers (Community Occupational Therapy in Dementia (COTiD)) was found clinically and cost effective in the Netherlands but not in Germany. This highlights the need to adapt and implement complex interventions to specific national contexts. The current trial aims to evaluate the United Kingdom-adapted occupational therapy intervention for people with mild to moderate dementia and their family carers living in the community (COTiD-UK) compared with treatment as usual. This study is a multi-centre, parallel-group, pragmatic randomised trial with internal pilot. We aim to allocate 480 pairs, with each pair comprising a person with mild to moderate dementia and a family carer, who provides at least 4 hours of practical support per week, at random between COTiD-UK and treatment as usual. We shall assess participants at baseline, 12 and 26 weeks, and by telephone at 52 and 78 weeks (first 40% of recruits only) after randomisation. The primary outcome measure is the Bristol Activities of Daily Living Scale (BADLS) at 26 weeks. Secondary outcome measures will include quality of life, mood, and resource use. To assess intervention delivery, and client experience, we shall collect qualitative data via audio recordings of COTiD-UK sessions and conduct semi-structured interviews with pairs and occupational therapists. COTiD-UK is an evidence-based person-centred intervention that reflects the current priority to enable people with dementia to remain in their own homes by improving their capabilities whilst reducing carer burden. If COTiD-UK is clinically and cost effective, this has major implications for the future delivery of dementia services across the UK. Current Controlled Trials ISRCTN10748953 Date of registration: 18 September 2014.

Factors associated with depression in older carers.

PubMed

Loi, Samantha M; Dow, Briony; Moore, Kirsten; Hill, Keith; Russell, Melissa; Cyarto, Elizabeth; Malta, Sue; Ames, David; Lautenschlager, Nicola

2016-03-01

Depression is an adverse outcome frequently seen in carers. With the increasing ageing population and reliance on informal carers, this study aims to identify factors associated with depression in carers in the older age group, using factors that have not been previously investigated. We conducted a cross-sectional analysis of 202 older carers using the Geriatric Depression scale, demographics, personality traits, attitudes to ageing and other carer characteristics. Increased hours spent caring and higher levels of neuroticism were all factors associated with depression. The care-recipient diagnosis, other personality traits, attitudes to ageing, leisure-physical activity (PA) and domestic-PA were not significantly associated with depression. These findings have important implications for interventions to target at-risk carers. Copyright © 2015 John Wiley & Sons, Ltd.

Qualitative process evaluation of a problem-solving guided self-help manual for family carers of young people with first-episode psychosis.

PubMed

McCann, Terence V; Lubman, Dan I

2014-06-06

Caring for a young person experiencing first-episode psychosis is challenging and can affect carers' well-being adversely. While some face-to-face approaches have achieved promising outcomes, they are costly and resource-intensive to provide, restricting their reach and penetration. Guided self-help in book-form (or bibliotherapy) is an alternative but untested approach in these circumstances. In this study, we aimed to evaluate carers' beliefs about the usefulness of problem-solving guided self-help manual for primary carers of young people with first-episode psychosis. A qualitative process evaluation nested in a randomised controlled trial, conducted across two early intervention psychosis services in Melbourne, Australia. 124 carers were randomised to problem-solving guided self-help intervention or treatment as usual. We also undertook a qualitative process evaluation, using individual interviews, with a random sample of 24 of the intervention group. A thematic analysis of the qualitative data was undertaken, which is the subject of this paper. Interviews were conducted between January 2009 and September 2010. Three themes were abstracted from the data, reflecting carers' beliefs about the usefulness of the manual: promoting carers' well-being, increasing carers' understanding of and support for the young person with first-episode psychosis, and accessibility and delivery modes of the programme. This process evaluation highlights that guided self-help is useful in informing and supporting carers of affected young people. While there is scope for broadening the delivery modes, the approach is easy to use and accessible, and can be used as a cost-effective adjunct to standard support provided to carers, by community mental health nurses and other clinicians. ACTRN12609000064202.

Death from cancer at home: the carers' perspective.

PubMed Central

Jones, R V; Hansford, J; Fiske, J

1993-01-01

OBJECTIVES--To collect information from principal carers of people who had died at home with cancer; to identify areas of support which need improvement. DESIGN--Semistructured interviews with carers two to four months after the death. SETTING--38 general practices in the Exeter, Torbay, and Plymouth health districts. SUBJECTS--207 carers. MAIN OUTCOME MEASURES--Services received by carers and quality of support. RESULTS--161 of 207 patients were aged 60 or over. 88 carers were aged under 60, 110 were 60-80, and 9 were > 80. Carers had difficulty in getting urgent professional help in only 15 out of 177 cases. 124 carers were not given advice on financial help and 174 were not told of support available from local charities. Although pain was well controlled, 25% of patients had no relief of other symptoms. Overall, 150 carers considered the support excellent, 45 good, 8 moderate, 2 poor, and 2 had no comment. CONCLUSIONS--Although care has improved in recent years, health professionals need to give carers more advice about help available outside health services. Domestic help was often needed earlier. Better appreciation of carers' problems is needed. Images p251-a PMID:8443527

Mental health of carers of children affected by HIV attending community-based programmes in South Africa and Malawi

PubMed Central

Skeen, Sarah; Tomlinson, Mark; Macedo, Ana; Croome, Natasha; Sherr, Lorraine

2015-01-01

There is strong evidence that both adults and children infected with and affected by HIV have high levels of mental health burden. Yet there have been few studies investigating carer mental health outcomes in the context of HIV in Malawi and South Africa. The objective of this study was to assess the mental health of carers of children affected by HIV as a part of the Child Community Care study, which aims to generate evidence on the effectiveness of community-based organisation (CBO) services to improve child outcomes. In a cross sectional study, we interviewed 952 carers of children (aged 4 to 13 years) attending 28 randomly selected CBOs funded by 11 major donors in South Africa and Malawi. Psychological morbidity was measured using the Shona Symptom Questionnaire (SSQ) and suicidal ideation was measured using an item from the Patient Health Questionnaire (PHQ). Carers were asked about care-seeking for emotional problems. Overall, 28% of carers scored above the clinical cut-off for current psychological morbidity and 12.2% reported suicidal ideation. We used logistic regression models to test factors associated with poor outcomes. Household unemployment, living with a sick family member, and perceived lack of support from the community were associated with both psychological morbidity and suicidal ideation in carers. Reported child food insecurity was also associated with psychological morbidity. In addition, carers living in South Africa were more likely to present with psychological morbidity and suicidal ideation than carers in Malawi. Rates of help-seeking for mental health problems were low. Carers of children affected by HIV are at risk for mental health problems as a result of HIV, socio-economic, care-giving and community factors. We call for increased recognition of the potential role of CBOs in providing mental health care and support for families as a means to improve equity in mental health care. Specifically, we highlight the need for increased

'It's the system working for the system': carers' experiences of learning disability services in Ireland.

PubMed

Power, Andrew

2009-02-01

The aim of this article is to examine the experiences of families with young adults with learning disabilities trying to access services. The landscape of disability services for this group is made up of day care, special vocational training and respite places. It aims to identify the extent of an implementation gap between government rhetoric and the degree to which services are characterised as being non-supportive interactions on the ground. Using Ireland as a case study, during a time when the economy is booming and government rhetoric claims unparalleled developments in allocating resources and extra respite 'places', this article identifies the main challenges faced by family carers associated with accessing appropriate services for their disabled adult child, in their attempt to achieve greater independence. This article reports the findings of a qualitative study in which individual semistructured interviews were held with family carers (n = 25) and representatives from national carer organisations (n = 6) in Ireland. These were people caring for an adult (18-30 years) with a learning disability and their experiences were also useful in cross-checking the carer organisation interviews. The findings show that there is limited flexibility, choice and availability in meeting the preferences of the service-users, and throughout the study, services were characterised as being non-supportive interactions. This is not simply symptomatic of a lack of resources. Despite improved funding, supportive attitudes and flexibility are still crucial in meeting user requirements at the level of delivery; thus highlighting that often the system works for the system, not for the user.

Diabetes-oriented learning family intervention (DOLFIN): a feasibility study evaluating an intervention for carers of young persons with Type 1 diabetes.

PubMed

Ridge, K; Thomas, S; Jackson, P; Pender, S; Heller, S; Treasure, J; Ismail, K

2014-01-01

To describe the development of an intervention for parents and carers of young people with Type 1 diabetes and assess the feasibility, acceptability and emerging clinical themes. Participants were carers of young persons aged 10-18 years with a diagnosis of Type 1 diabetes of more than 12 months' duration in two inner-city South London hospitals. Carers were invited to attend six sessions of a group workshop where they received emotional support, diabetes education and were taught motivational interviewing techniques to support their child. Out of 106 eligible participants, carers of 31 young people with Type 1 diabetes were recruited, 17 of whom 'completed' the intervention (attending four or more sessions). Participants discussed a variety of themes in session, including the increasing difficulty of diabetes management as children grow older, parenting techniques for managing diabetes in the home and the emotional challenges of having a child with a chronic illness. Engaging parents in a carer intervention for Type 1 diabetes was a challenge, but parents who participated appeared to value the programme. Future interventions for carers need to take account of carers' wishes and expectations in order to maximize user uptake. © 2013 The Authors. Diabetic Medicine © 2013 Diabetes UK.

Psycho-socio-economic outcomes in acoustic neuroma patients and their carers related to tumour size.

PubMed

Pritchard, C; Clapham, L; Davis, A; Lang, D A; Neil-Dwyer, G

2004-08-01

The objective was to explore psycho-socio-economic outcomes of a 2-year cohort of patients having surgery for an acoustic neuroma, and carers and their relationship to tumour size after surgery. The Wessex Patient Carer Questionnaire was designed in conjunction with Patients and Carers, to determine psycho-socio-economic outcomes. The results were juxtaposed against clinical profiles. The House-Brackman (HB) scale was used to assess facial function at 6 and 12 months after operation. The cohort contained 102 patients. There were 87% effective responders. Half were aged below 54 years and 30% had school-aged children. The majority (93%) of patients were operated via the translabyrinthine approach. Patients with large tumours, i.e. greater than 3 cm (28%), had most post-treatment physical problems, including hearing and balance difficulties, and 42% reported difficulty eating in public. Thirty-four per cent felt 'stressed' and 18%'depressed'. After 6 months, facial function was recorded as HB scale 5/6 in 21% of patients but by 1 year only 8% of patients were HB 5/6. Patients and carers were generally very satisfied with their in-patient neurosurgical care, but significantly dissatisfied with post-discharge care - particularly the shortcoming of the community services. The majority of families felt 'unsupported' and only 20% of patients had confidence in their General Practitioner's knowledge. Families faced severe socio-economic disruption and patients"time-off-work' was estimated to cost pound 954,000. Carers carried considerable post-discharge psychological burdens and costs to the public purse were calculated to be pound 52,000.

'It is not the State's fault that we have a person like this': relations, institutions and the meaning of 'rights' to carers of People with Psychosocial Disabilities in Chile.

PubMed

Montenegro, C R; Cornish, F

2015-01-01

The UN Convention on the Rights of Persons with Disabilities (CRPD) has been adopted by national governments to advance the interests and wellbeing of people with psychosocial disabilities (PPSD). It is often assumed that the adoption of a 'rights' framework will advance the dignity and autonomy of PPSD. However, little is known about how families and communities understand 'rights'. The present paper, based on research conducted in Santiago, Chile, takes a contextual approach to rights, asking: How do family carers of PPSD understand and use the idea of 'rights'? How does the context of caregiving shape families' understanding of rights? Four focus groups were conducted with a total of 25 family carers (predominantly mothers) of people diagnosed with schizophrenia and other severe neuropsychiatric conditions. Thematic analysis was conducted. Carers' experience of caregiving was marked by isolation, stigmatization, a lack of support and mistreatment by public services. Their family networks did not provide sustained help and support, and the public services they had used were characterized by scarce resources and inadequate support. Carers did not refer to rights of dignity or autonomy. Given an unsupportive context, and worries about who would care for their child after the carer's death, their primary interest in 'rights' was a right to guaranteed, long-term care. While carers endorsed the idea of universal, state-supported rights, appeals to compassion and the exchange of favours were spoken of as the most effective strategies for gaining a minimum level of services and support. Carers' understandings, framed against a background of unmet needs and shaped by a history of unsatisfactory interactions with services and institutions, do not resonate with the principles of the CRPD. We suggest an expanded, relational struggle for rights that acknowledges the role of families and the tensions surrounding the distribution of rights within the family.

A pilot study to evaluate the effectiveness of an individualized and cognitive behavioural communication intervention for informal carers of people with dementia: The Talking Sense programme.

PubMed

Barnes, Colin J; Markham, Chris

2018-05-01

People with dementia and family carers often experience difficulties communicating together. These difficulties are considered to contribute significantly to the depression, anxiety and negative feelings such as guilt often reported by dementia family carers. To develop and contribute to the theory and evidence base for single-component, psychosocial interventions that address these difficulties by evaluating the effectiveness of the Talking Sense programme which was designed to reflect existing best evidence. Talking Sense was delivered as an individualized, one to one, cognitive behavioural approach for developing knowledge, skills, thinking and behaviour of dementia family carers in managing communication difficulties. In this study, a randomized controlled trial compared 27 carers who completed three one-to-one individualized sessions using Talking Sense with 25 carers who received a single, knowledge-only, control discussion. There were no significant differences for the primary outcome measure of carer anxiety and depression as well as carer quality of life and general self-efficacy. Statistically significant results suggested carers receiving the Talking Sense intervention had fewer communication difficulties happening (p = 0.046) and felt more valued by their relatives (p = 0.046). A score close to significance (p = 0.052) suggested they perceived their relatives to be more communicatively competent. The intervention and research design were shown to be effective with low attrition and high adherence to treatment. A non-significant finding for the primary outcome measure does not support the potential for this intervention to effect carer anxiety and depression. The potential for perceived change in the person with dementia, with statistically fewer communication difficulties happening and the carer feeling more valued by their relative, was the most significant finding from this programme of research. Recommendations for further research are made. © 2018

Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews

PubMed Central

Kendall, Marilyn; Boyd, Kirsty; Grant, Liz; Highet, Gill; Sheikh, Aziz

2010-01-01

Objective To assess if family care givers of patients with lung cancer experience the patterns of social, psychological, and spiritual wellbeing and distress typical of the patient, from diagnosis to death. Design Secondary analysis of serial qualitative interviews carried out every three months for up to a year or to bereavement. Setting South east Scotland. Participants 19 patients with lung cancer and their 19 family carers, totalling 88 interviews (42 with patients and 46 with carers). Results Carers followed clear patterns of social, psychological, and spiritual wellbeing and distress that mirrored the experiences of those for whom they were caring, with some carers also experiencing deterioration in physical health that impacted on their ability to care. Psychological and spiritual distress were particularly dynamic and commonly experienced. In addition to the “Why us?” response, witnessing suffering triggered personal reflections in carers on the meaning and purpose of life. Certain key time points in the illness tended to be particularly problematic for both carers and patients: at diagnosis, at home after initial treatment, at recurrence, and during the terminal stage. Conclusions Family carers witness and share much of the illness experience of the dying patient. The multidimensional experience of distress suffered by patients with lung cancer was reflected in the suffering of their carers in the social, psychological, and spiritual domains, with psychological and spiritual distress being most pronounced. Carers may need to be supported throughout the period of illness not just in the terminal phase and during bereavement, as currently tends to be the case. PMID:20538635

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

PubMed

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

2016-12-01

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

Are Patient and Carer Experiences Mirrored in the Practice Reviews of Self-management Support (Prisms) Provider Taxonomy?

PubMed Central

Kenealy, Timothy; Kuluski, Kerry; McKillop, Ann; Parsons, John; Wong-Cornall, Cecilia

2017-01-01

Introduction: Patient self-management support is central to care for long term conditions and for integrated care. Patients and their carers are the final arbiter of whether support for self-management has been effective. A new taxonomy lists 14 categories of provider activities that support patient self-management (Practical Reviews in Self-Management Support, PRISMS). We asked whether we could recognise these provider activities in narratives from patients and carers. We sought to extend the theoretical framework of the taxonomy to include the view from patient and carers. Methods: We interviewed 28 patients and family carers in a case study of primary health care in New Zealand in 2015 to determine which components of the taxonomy were visible. We drew on interviews with clinicians and organisation persons to explain case study context. Results: We found, within patient and carer data, evidence of all 14 components of provider self-management support. The overarching dimensions of the taxonomy helped reveal an intensity and consistency of provider behaviour that was not apparent considering the individual components. Conclusions: Patient and carer data mapped to provider activities. The taxonomy was not explicit on provider relationships and engagement with, or separate support needs of, patients and carers. PMID:28970749

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

PubMed

Hughes, Nic; Locock, Louise; Ziebland, Sue

2013-11-01

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

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

ERIC Educational Resources Information Center

Moore, Tim; McArthur, Morag; Morrow, Ros

2009-01-01

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

Management of fear of radiation exposure in carers of outpatients treated with iodine-131.

PubMed

Calais, Phillipe J; Page, Andrew C; Turner, J Harvey

2012-07-01

To characterise potential fear of radiation exposure in a normal population of individuals who have volunteered to care for a radioactive family member or friend after outpatient radioimmunotherapy (RIT) treatment for cancer, and obtain their knowing and willing acceptance of the risk. Over 750 carers of 300 patients confined to their homes for 1 week following outpatient iodine-131 rituximab RIT of lymphoma were interviewed by a nuclear medicine physicist according to a multi-visit integrated protocol designed to minimise radiation exposure, define risk and gain informed consent. Median radiation exposure of carers was 0.49 mSv (range 0.01-3.7 mSv) which is below the Western Australian regulatory limit of 5 mSv for consenting adult carers of radioactive patients. After signing a declaration of consent, only 2 carers of 750 abrogated their responsibility and none of those who carried out their duties expressed residual concerns at the end of the exit interview with respect to their radiation exposure. Fear of radiation exposure in a normal population may be characterised as a normal emotional response. In the special case of carers of radioactive patients, this fear may be successfully managed by rational, authoritative and empathic explanation to define the risk and gain willing acceptance within the context of domiciliary patient care.

Young-onset Alzheimer dementia: a comparison of Brazilian and Norwegian carers' experiences and needs for assistance.

PubMed

Dourado, M C N; Laks, J; Kimura, N R; Baptista, M A T; Barca, M L; Engedal, K; Tveit, B; Johannessen, A

2018-06-01

Although dementia typically occurs in older people, it can also emerge in people aged younger than 65 years in the form of young-onset dementia, the most common type of which is Alzheimer's disease (AD). However, few studies have examined the needs of persons with young-onset AD (YO-AD) and their families, and cross-cultural research on the topic is even scarcer. In response, we investigated the situations, experiences and needs for assistance of carers of persons with YO-AD in Brazil and Norway. As part of our qualitative study, we formed a convenience sample of Brazilian (n = 9; 7 women) and Norwegian carers (n = 11; 6 women) in 2014 and 2015, respectively, and analysed data in light of a modified version of grounded theory. Carers' narratives from both countries revealed five common themes in terms of how YO-AD affected carers' psychological and emotional well-being, physical well-being, professional and financial well-being, social lives and need for support services. The infrequent differences between carers of persons with YO-AD in Brazil and Norway indicate that carers' problems are highly similar regardless of cultural differences and public services provided. Copyright © 2017 John Wiley & Sons, Ltd. Copyright © 2017 John Wiley & Sons, Ltd.

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

PubMed

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

2015-10-01

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

Understanding informal carers' experiences of caring for older people with a hip fracture: a systematic review of qualitative studies.

PubMed

Saletti-Cuesta, Lorena; Tutton, Elizabeth; Langstaff, Debbie; Willett, Keith

2018-04-01

This systematic review aimed to reconceptualize experiences from a variety of papers to provide direction for research, policy and practice. Meta-ethnography was used to inform the review, and 21 studies were included. The analysis identified a core theme of "engaging in care: struggling through", as carers, who wanted to be involved in caring, learnt to live with the intense and stressful impact of caring and changes to their life. The core theme is represented through three themes (1) Helping another to live, (2) Adapting ways of living and (3) Negotiating the unknown. The discussion identified a focus on carers of people suffering from a hip fracture, the willingness of informal carers to engage in caring and the intense experience of adapting to changes in relationships and dependency alongside a steep experiential learning curve. Tensions exist in negotiations with complex health care systems as carers do not feel their expertise is valued and struggle to find and understand information. Implications for Rehabilitation Including relatives/carers in the umbrella of care within a family-centred approach. Involving relatives/carers within shared decision-making about care requirements and rehabilitation goals. Utilizing forms of experiential learning to help the development of relatives/carers skills in relation to their role as carer. Providing opportunities for carers to explore ways of sustaining their own health through self-compassion.

Carer Appraisal Scale: A Pilot Study of a Novel Carer-Based Assessment of Patient Functioning.

PubMed

Jeyasingam, Neil

2018-03-01

Measurement of patient outcomes is an integral part of mental health service evaluation, as well as guiding clinical practice to ensure best outcomes for patients. Moreover, carers have long held a need for a voice in care outcomes. Despite there existing numerous tools for quantifying patient functioning based on clinician assessments or self-reports, there is a serious paucity of tools available for the carers of patients to appraise their functioning. This tool, developed for use in a community aged care psychiatric service, involves 4 sections-a global impression of patient progress, a scorable checklist of patient functioning in multiple domains, a qualitative section for identifying the most pressing concerns from the carer's perspective, and an open-ended feedback on treatment to date. In this pilot study, the Carer Appraisal Scale was found to have a fair correlation with the Health of Nation Outcomes Scale for over 65. This tool has potential for use in community aged care psychiatric services, as it provides a framework for communication of concerns, assists in prioritizing care, and adds value to clinician treatment plans, as well as providing another dimension to assessment of the patient while empowering carers in care participation. Practical implications of its use, limitations, and potential for modifications are also discussed.

How older adults and their informal carers prevent falls: An integrative review of the literature.

PubMed

Wilkinson, Amanda; Meikle, Nicole; Law, Phoebe; Yong, Hui Jia; Butler, Philip; Kim, Justin; Mulligan, Hilda; Hale, Leigh

2018-06-01

Falls in older persons are prevalent and costly for the individual and the health system. Falls prevention guidelines have been developed from best evidence to minimise falls in older persons. To synthesise the literature on falls prevention strategies used by community dwelling older persons and/or their informal carers and to compare the commonly adopted strategies with those recommended by falls prevention guidelines. Health sciences databases for full text articles published in English plus reference list searching of included articles. An integrative review approach. Studies were included if they identified fall prevention management strategies used by community dwelling older adults and/or their informal carers. Quality appraisal was undertaken using appropriate Joanna Briggs Institute critical appraisal tools. Information relevant to the aim of the review were extracted and coded into categories then inductively sorted into sub-themes and themes. Of the seventeen studies included in the review, eleven identified older adults' falls prevention strategies, two investigated fall prevention strategies used by carers, and four explored perspectives of older persons together with their carers, representing the perspectives of an estimated 501 older persons and 102 carers. Strategies used by older adults arose because of self-awareness about their changing physical ability, and advice and support mainly from family or friends. Carer fall prevention strategy was predominantly around protection of the older adult from falling by discouraging independence. The fall self-management strategies adopted by older adults and their carers to prevent falls, in the main, do not align with international best practice fall prevention guidelines. Copyright © 2018. Published by Elsevier Ltd.

Cost effectiveness of a manual based coping strategy programme in promoting the mental health of family carers of people with dementia (the START (STrAtegies for RelaTives) study): a pragmatic randomised controlled trial.

PubMed

Knapp, Martin; King, Derek; Romeo, Renee; Schehl, Barbara; Barber, Julie; Griffin, Mark; Rapaport, Penny; Livingston, Debbie; Mummery, Cath; Walker, Zuzana; Hoe, Juanita; Sampson, Elizabeth L; Cooper, Claudia; Livingston, Gill

2013-10-25

To assess whether the START (STrAtegies for RelatTives) intervention added to treatment as usual is cost effective compared with usual treatment alone. Cost effectiveness analysis nested within a pragmatic randomised controlled trial. Three mental health and one neurological outpatient dementia service in London and Essex, UK. Family carers of people with dementia. Eight session, manual based, coping intervention delivered by supervised psychology graduates to family carers of people with dementia added to usual treatment, compared with usual treatment alone. Costs measured from a health and social care perspective were analysed alongside the Hospital Anxiety and Depression Scale total score (HADS-T) of affective symptoms and quality adjusted life years (QALYs) in cost effectiveness analyses over eight months from baseline. Of the 260 participants recruited to the study, 173 were randomised to the START intervention, and 87 to usual treatment alone. Mean HADS-T scores were lower in the intervention group than the usual treatment group over the 8 month evaluation period (mean difference -1.79 (95% CI -3.32 to -0.33)), indicating better outcomes associated with the START intervention. There was a small improvement in health related quality of life as measured by QALYs (0.03 (-0.01 to 0.08)). Costs were no different between the intervention and usual treatment groups (£252 (-28 to 565) higher for START group). The cost effectiveness calculations suggested that START had a greater than 99% chance of being cost effective compared with usual treatment alone at a willingness to pay threshold of £30,000 per QALY gained, and a high probability of cost effectiveness on the HADS-T measure. The manual based coping intervention START, when added to treatment as usual, was cost effective compared with treatment as usual alone by reference to both outcome measures (affective symptoms for family carers, and carer based QALYs). ISCTRN 70017938.

Informal carers' health-related quality of life and patient experience in primary care: evidence from 195,364 carers in England responding to a national survey.

PubMed

Thomas, Gwilym P A; Saunders, Catherine L; Roland, Martin O; Paddison, Charlotte A M

2015-05-15

We aim to describe the health-related quality of life of informal carers and their experiences of primary care. Responses from the 2011-12 English General Practice Patient Survey, including 195,364 informal carers, were analysed using mixed effect logistic regressions controlling for age, gender, ethnicity and social deprivation to describe carer health-related quality of life (mobility, self-care, usual activities, pain, and anxiety/depression, measured using EQ-5D) and primary care experience (access, continuity and communication). Informal carers reported poorer health-related quality of life than non-carers of similar age, gender, ethnicity and social deprivation. Increasing caring commitment was associated with worse EQ-5D scores, with carers of 50+ hours a week scoring 0.05 points lower than non-carers (95 % CI 0.05 to 0.04), equivalent to 18 fewer days of full health annually. Considering each domain of EQ-5D separately, carers of 50+ hours/week were more likely to report pain OR = 1.53 (1.50-1.57), p < 0.0001, and anxiety/depression OR = 1.69 (1.66-1.73), p < 0.0001, than non-carers. Younger carers scored lower on EQ-5D than non-carer peers but the converse was true among over-85s. In the most deprived areas carers reported the equivalent of 37 fewer days of full health annually than carers in the most affluent areas. On average, carers reported poorer patient experiences in all areas of primary care than non-carers (odds ratios 0.84-0.97), with this difference being most marked in the domain of access. Informal carers experience a double disadvantage of poorer health-related quality of life and poorer patient experience in primary care. We find no evidence for health benefits of caregiving. We recommend physicians identify and treat carer health problems, including pain and anxiety/depression, particularly among young, deprived and high time-commitment carers. Improving patient experience for carers, including access to primary care, should be a priority.

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…

Moderated Online Social Therapy: A Model for Reducing Stress in Carers of Young People Diagnosed with Mental Health Disorders.

PubMed

Gleeson, John; Lederman, Reeva; Koval, Peter; Wadley, Greg; Bendall, Sarah; Cotton, Sue; Herrman, Helen; Crisp, Kingsley; Alvarez-Jimenez, Mario

2017-01-01

Family members caring for a young person diagnosed with the onset of mental health problems face heightened stress, depression, and social isolation. Despite evidence for the effectiveness of family based interventions, sustaining access to specialist family interventions is a major challenge. The availability of the Internet provides possibilities to expand and sustain access to evidence-based psychoeducation and personal support for family members. In this paper we describe the therapeutic model and the components of our purpose-built moderated online social therapy (MOST) program for families. We outline the background to its development, beginning with our face-to-face EPISODE II family intervention, which informed our selection of therapeutic content, and the integration of recent developments in positive psychology. Our online interventions for carers integrate online therapy, online social networking, peer and expert support, and online social problem solving which has been designed to reduce stress in carers. The initial version of our application entitled Meridian was shown to be safe, acceptable, and feasible in a feasibility study of carers of youth diagnosed with depression and anxiety. There was a significant reduction in self-reported levels of stress in caregivers and change in stress was significantly correlated with use of the system. We have subsequently launched a cluster RCT for caregivers with a relative diagnosed with first-episode psychosis. Our intervention has the potential to improve access to effective specialist support for families facing the onset of serious mental health problems in their young relative.

Factors influencing indirect speech and language therapy interventions for adults with learning disabilities: the perceptions of carers and therapists.

PubMed

Graves, Judy

2007-03-01

The working context for speech and language therapists (SLTs) delivering interventions to adults who have a learning disability has changed following the reorganization of care provision from hospitals to the community. Consequently, SLTs often deliver their care within a social model of disability through indirect intervention in collaboration with carers. However, there has been little research into how this approach works in practice. To gain insight into the working context by identifying the key factors that influence indirect SLT interventions as perceived by SLTs and by paid carers from a range of service providers. To explore the implications of the results for the delivery of indirect SLT interventions and provide direction for further research. Semi-structured interviews were used to collect data from an opportunistic sample of five SLTs working in Community Learning Disability Teams (CLDTs) and 12 carers from residential and day care services who had had experience of working with SLTs. The data were analysed inductively using a grounded theory framework. Two broad themes emerged for SLTs: roles and expectations, and changing carer behaviour through training. The key themes for carers were roles and values, awareness of communication needs, and motivation and opportunity to implement interventions. Four broad factors are suggested as having the potential to influence indirect interventions: diversity in the working context; possible conflict between the guiding values of SLTs and carers, particularly residential carers; collaboration and support for implementation; and SLT doubts about the effectiveness of formal carer communication training. The results add to the evidence that the delivery of indirect speech and language therapy interventions to people with learning disabilities is a complex activity demanding specialist skills from SLTs. The findings suggest that these should include expertise in professional collaborative and relational skills, and

Family support and cardiac rehabilitation: a comparative study of the experiences of South Asian and White-European patients and their carer's living in the United Kingdom.

PubMed

Astin, Felicity; Atkin, Karl; Darr, Aliya

2008-03-01

Effective lifestyle modification facilitated by cardiac rehabilitation is known to reduce the occurrence of adverse coronary events and mortality. South Asians have poorer outcomes after a myocardial infarction than the general UK population, but little is known about their experiences of family support, cardiac rehabilitation and lifestyle change. To explore the nature of family support available to a sample of South Asian and White-European cardiac patients and to highlight similarities and differences between these groups with regard to cardiac rehabilitation and lifestyle modification. Using a qualitative approach, semi-structured interviews (in 1 of 6 languages) were conducted by researchers with; 45 South Asian patients and 37 carers and 20 White-European patients and 17 carers. Interviews were conducted in a home setting, up to eighteen months after discharge from hospital following myocardial infarction, coronary artery bypass surgery or unstable angina. The main themes that emerged related to the provision of advice and information, family support and burden, dietary change and exercise regimes. Several cultural and ethnic differences were identified between patients and their families alongside similarities, irrespective of ethnicity. These may represent generic characteristics of recovery after a cardiac event. Health professionals should develop a cultural repertoire to engage with diversity and difference. Not every difficulty a person encounters as they try to access appropriate service delivery can be attributed to ethnic background. By improving services generally, support for South Asian populations can be improved. The challenge is to know when ethnicity makes a difference and mediates a person's relationship with service support and when it does not.

Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview.

PubMed

Fox, Siobhan; Cashell, Alison; Kernohan, W George; Lynch, Marie; McGlade, Ciara; O'Brien, Tony; O'Sullivan, Sean S; Foley, Mary J; Timmons, Suzanne

2017-07-01

Palliative care is recommended for non-malignant illnesses, including Parkinson's disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a 'fear' in their patients about introducing palliative care. However, less is known about the views of people with Parkinson's disease and their carers about palliative care. (1) To explore the palliative care and related issues most affecting people with Parkinson's disease and their families and (2) to examine perceptions about/understanding of palliative care. This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis. A total of 31 people participated, both people with Parkinson's disease ( n = 19) and carers ( n = 12), across three Movement Disorder Clinics in the Republic of Ireland. People with Parkinson's disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson's disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs. A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson's disease and their carers, and people with Parkinson's disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson's disease.

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

PubMed

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

2015-01-01

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

An initiative to provide emergency healthcare for older people in the community: the impact on carers.

PubMed

Knowles, E; Mason, S; Colwell, B

2011-04-01

The increase in the size and age of the UK older population has had a major effect on emergency services. Many older people will visit the emergency department but not necessarily require significant clinical intervention. The Paramedic Practitioner in Older People's Support (PPOPS) scheme was set up to provide community-based clinical assessment of older patients contacting the emergency services with minor acute conditions as an alternative approach to emergency department transfer. Patient carers were followed-up to evaluate the impact of this scheme when compared with standard transfer to the emergency department. Postal questionnaires, including items on the level of care provided, satisfaction with care received and carer impact, were administered to 561 carers. The overall response rate was 71.5% (401/561). The carers were predominantly female, approximately 60 years of age and family members, with more than three-quarters providing some form of physical care before the patient episode. Overall, carers did report an increase in the level of care provided before episode, significantly more so in the emergency department group (p=0.003). These increases related to more input needed in supporting physical activities. The carers in the PPOPS group were more likely to report greater satisfaction with their impression of care and staff attitude and would prefer treatment at home for the patient than those in the emergency department group (p<0.001). A minor health event does impact on the life of a carer. However, community-based schemes, such as PPOPS, do not increase the burden on carers and have high levels of satisfaction among this important group of the community.

Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study.

PubMed

Clayton, Josephine M; Butow, Phyllis N; Arnold, Robert M; Tattersall, Martin H N

2005-08-01

Discussing end-of-life issues is of key importance to terminally ill cancer patients and their families, and a challenging topic for both health professionals and patients/carers. There is a lack of research evidence in the literature to guide clinical practice. The objective of this study was to explore the optimal content and phrasing of information when discussing the dying process and end-of-life issues with terminally ill cancer patients and their carers. We conducted focus groups and individual interviews with 19 palliative care patients and 24 carers from three palliative care services in Sydney, and 22 palliative care health professionals from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Further focus groups and/or individual interviews were conducted until no additional topics were raised. Participants' narratives were analysed using qualitative methodology. Distinct content areas emerged for discussing end-of-life issues: treatment decisions at the end-of-life; potential future symptoms; preferences for place of death; the process of dying; what needs to be done immediately after death; and existential issues. When discussing the process of dying participants recommended: exploring the persons' fears about dying and dispelling myths; describing the final days and the likely unconscious period; and the reduced need for food and fluids. Many participants identified the dilemma regarding whether to discuss potential complications around the time of death. This paper provides strategies, words and phrases which may inform discussions about the process of dying and end-of-life issues. Further research is needed to determine the generalizability of these findings.

Social exclusion in adult informal carers: A systematic narrative review of the experiences of informal carers of people with dementia and mental illness.

PubMed

Greenwood, Nan; Mezey, Gillian; Smith, Raymond

2018-06-01

Social exclusion has a negative impact on quality of life. People living with dementia or mental health disorders as well as informal carers have been separately described as socially excluded. The objective of this systematic narrative review was to examine the extent to which social exclusion experienced by adult informal carers of people living with dementia or severe mental health disorders has been identified and described in research literature. It synthesised qualitative and quantitative evidence and included the perspectives of carers themselves and of professionals. Eight electronic databases (1997-2017) were searched. Five relevant studies published between 2010 and 2016 were identified. All were qualitative and used interviews and focus groups. Study quality was variable and most were European. Two focused on carers of people living with dementia and three on carers of people with mental health disorders. Four investigated carers' perspectives and experiences of social exclusion directly (total of 137 carer participants, predominantly parents, spouses and adult children), while the fifth focused on the perceptions of 65 participants working in health and social care. Stigma, financial difficulties and social isolation were highlighted in four studies and the challenges for carers in engaging in leisure activities were described in the fifth. Most conceptualised social exclusion as a form of stigma, or as resulting from stigma. One presented social exclusion as an element of carer burden. Two explicitly discussed the negative effects of social exclusion on carers. The dearth of research and the lack of specificity about social exclusion in carers was surprising. Future research should investigate aspects of social exclusion that may adversely affect carer wellbeing. Copyright © 2018 The Authors. Published by Elsevier B.V. All rights reserved.

An educational intervention to reduce pain and improve pain management for Malawian people living with HIV/AIDS and their family carers: study protocol for a randomised controlled trial.

PubMed

Nkhoma, Kennedy; Seymour, Jane; Arthur, Antony

2013-07-13

Many HIV/AIDS patients experience pain often due to advanced HIV/AIDS infection and side effects of treatment. In sub-Saharan Africa, pain management for people with HIV/AIDS is suboptimal. With survival extended as a direct consequence of improved access to antiretroviral therapy, the prevalence of HIV/AIDS related pain is increasing. As most care is provided at home, the management of pain requires patient and family involvement. Pain education is an important aspect in the management of pain in HIV/AIDS patients. Studies of the effectiveness of pain education interventions for people with HIV/AIDS have been conducted almost exclusively in western countries. A randomised controlled trial is being conducted at the HIV and palliative care clinics of two public hospitals in Malawi. To be eligible, patient participants must have a diagnosis of HIV/AIDS (stage III or IV). Carer participants must be the individual most involved in the patient's unpaid care. Eligible participants are randomised to either: (1) a 30-minute face-to-face educational intervention covering pain assessment and management, augmented by a leaflet and follow-up telephone call at two weeks; or (2) usual care. Those allocated to the usual care group receive the educational intervention after follow-up assessments have been conducted (wait-list control group). The primary outcome is pain severity measured by the Brief Pain Inventory. Secondary outcomes are pain interference, patient knowledge of pain management, patient quality of life, carer knowledge of pain management, caregiver motivation and carer quality of life. Follow-up assessments are conducted eight weeks after randomisation by palliative care nurses blind to allocation. This randomised controlled trial conducted in sub-Saharan Africa among people living with HIV/AIDS and their carers will assess whether a pain education intervention is effective in reducing pain and improving pain management, quality of life and carer motivation. Current

Healthcare organisation and delivery for people with dementia and comorbidity: a qualitative study exploring the views of patients, carers and professionals.

PubMed

Bunn, Frances; Burn, Anne-Marie; Robinson, Louise; Poole, Marie; Rait, Greta; Brayne, Carol; Schoeman, Johan; Norton, Sam; Goodman, Claire

2017-01-18

People living with dementia (PLWD) have a high prevalence of comorbidty. The aim of this study was to explore the impact of dementia on access to non-dementia services and identify ways of improving service delivery for this population. Qualitative study involving interviews and focus groups. Thematic content analysis was informed by theories of continuity of care and access to care. Primary and secondary care in the South and North East of England. PLWD who had 1 of the following comorbidities-diabetes, stroke, vision impairment, their family carers and healthcare professionals (HCPs) in the 3 conditions. We recruited 28 community-dwelling PLWD, 33 family carers and 56 HCPs. Analysis resulted in 3 overarching themes: (1) family carers facilitate access to care and continuity of care, (2) the impact of the severity and presentation of dementia on management of comorbid conditions, (3) communication and collaboration across specialities and services is not dementia aware. We found examples of good practice, but these tended to be about the behaviour of individual practitioners rather than system-based approaches; current systems may unintentionally block access to care for PLWD. This study suggests that, in order to improve access and continuity for PLWD and comorbidity, a significant change in the organisation of care is required which involves: coproduction of care where professionals, PLWD and family carers work in partnership; recognition of the way a patient's diagnosis of dementia affects the management of other long-term conditions; flexibility in services to ensure they are sensitive to the changing needs of PLWD and their family carers over time; and improved collaboration across specialities and organisations. Research is needed to develop interventions that support partnership working and tailoring of care for PLWD and comorbidity. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to

What are the factors that facilitate or hinder resilience in older spousal dementia carers? A qualitative study.

PubMed

Donnellan, Warren J; Bennett, Kate M; Soulsby, Laura K

2015-01-01

Much is known about the factors making caring for a spouse with dementia burdensome. However, relatively little is known about factors that help some spouses become resilient. We define resilience as 'the process of negotiating, managing and adapting to significant sources of stress or trauma'. We aimed to assess whether spousal dementia carers can achieve resilience and to highlight which assets and resources they draw on to facilitate or hinder resilience, using an ecological framework . Twenty in-depth qualitative interviews with spousal carers from two carer support groups and a care home in North West England. Eight participants were resilient and 12 were not. A resilient carer was characterised as someone who stays positive and actively maintained their relationship and loved one's former self. Resilient carers were knowledgeable and well supported by family but especially friends, with whom they shared this knowledge. They were more actively engaged with services such as respite care. There is a need to move towards more ecological models of resilience. We propose that access to assets and resources is not always sufficient to facilitate resilience. Implications of these findings are discussed.

Dysexecutive symptoms and carer strain following acquired brain injury: Changes measured before and after holistic neuropsychological rehabilitation.

PubMed

Goodwin, Rachel A; Lincoln, Nadina B; Bateman, Andrew

2016-06-18

Following acquired brain injury (ABI), deficits in executive functioning (EF) are common. As a result many brain-injured patients encounter problems in every-day functioning, and their families experience significant strain. Previous research has documented the benefits of cognitive rehabilitation for executive dysfunction, and rehabilitation programmes designed to ameliorate functional problems associated with ABI. This study primarily aims to evaluate whether a neuropsychological rehabilitation programme reduces reported symptoms of everyday dysexecutive behaviour and carer strain. In this study 66 ABI outpatients attended comprehensive holistic neuropsychological rehabilitation programme. A repeated-measures design was employed to determine the effect of rehabilitation on EF and carer strain, as part of a service evaluation. Outcome measures comprised the dysexecutive questionnaire (DEX/DEX-I) and carer strain index (CSI), applied pre- and post-rehabilitation. Results indicate rehabilitation benefited clients and carers in 5 of 6 DEX/DEX-I subscales, and 2 of 3 CSI subscales, (p < 0.05). An effect of aetiology on rehabilitation was found on the metacognitive scale of the DEX-I. Therefore, this study supports a comprehensive holistic neuropsychological rehabilitation programme as effective in reducing reported symptoms of dysexecutive behaviour and carer strain following ABI.

A Systematic Review and Meta-Analysis Comparing Carer Focused and Dyadic Multicomponent Interventions for Carers of People With Dementia

PubMed Central

Laver, Kate; Milte, Rachel; Dyer, Suzanne; Crotty, Maria

2016-01-01

Objective: The aim of this study was to compare the efficacy of two approaches: multicomponent interventions that focus on working with the carer and dyadic interventions that work with both the carer and the person with dementia. Method: A systematic review involving a search of Medline, EMBASE, and PsycINFO in October 2015 was performed. Randomized controlled trials involving carers of people with dementia and comparing multicomponent interventions with usual care were included. Results: Pooling of all studies demonstrated that multicomponent interventions can reduce depressive symptoms, improve quality of life, reduce carer impact, and reduce behavioral and psychological symptoms of dementia as well as caregiver upset with these symptoms. We were unable to find a significant difference in the effects of dyadic interventions in comparison with carer focused interventions for these outcomes. Discussion: Although effect sizes associated with intervention are small, multicomponent interventions are relatively inexpensive to deliver, acceptable, and widely applicable. PMID:27458254

"Something that happens at home and stays at home": An exploration of the lived experience of young carers in Western Australia.

PubMed

McDougall, Emma; O'Connor, Moira; Howell, Joel

2018-02-19

There are approximately 350,000 young carers in Australia, yet their experience is not well understood. Young carers face adversities and disenfranchisement by being a young person in a caring role, and the role can affect other areas of their lives. We explored the lived experiences of young carers, aged 14-25 years (N = 13), from Western Australia through in-depth semi-structured interviews. A phenomenological approach was adopted. A thematic analysis of the transcribed interview data revealed four key themes. "Lessons from the experience" articulates the perceived benefits of the role and the themes: "navigating competing demands," "desire for normalcy" and "lost in the system" capture the struggles and complexities associated with being a young carer. Although there are challenges to being a young carer, it is something that young carers report can be beneficial and something that is done for those they love. © 2018 John Wiley & Sons Ltd.

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

PubMed

Ewing, Gail; Austin, Lynn; Grande, Gunn

2016-04-01

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

Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: A scoping review and synthesis.

PubMed

Harris, Melanie; Thomas, Geoff; Thomas, Mary; Cafarella, Paul; Stocks, Allegra; Greig, Julia; McEvoy, R Doug

2018-04-01

ABSTRACTObjective:Disease management in motor neurone disease (MND) is focused on preserving quality of life. However, the emphasis has so far been on physical symptoms and functioning and not psychosocial wellbeing. MND affects the wellbeing of carers, of family and social network members, and of healthcare providers, as well as of the patients. We therefore aimed to assess and synthesize the knowledge about maximizing MND-related psychosocial wellbeing across all these groups. We used a systematic search and selection process to assess the scope of the literature along with a narrative synthesis of recent high-quality reviews. The original studies were mainly observational studies of patients and, to a lesser extent, of carers. There were few interventional studies, mainly of patients. There were very few studies of any type on wellbeing in their wider social network or in healthcare professionals. All the review literature looked at MND patient or carer wellbeing, with some covering both. No reviews were found of wellbeing in other family members, patients' social networks, or their healthcare professionals. The reviews demonstrated wellbeing problems for patients linked to psychosocial issues. Carer wellbeing is also compromised. Psychotherapies, social supports, improved decision supports, and changes to healthcare delivery are among the suggested strategies for improved patient and carer wellbeing, but no proven interventions were identified for either. Early access to palliative care, also not well-tested but recommended, is poorly implemented. Work on interventions to deal with well-established wellbeing problems for patients and carers is now a research priority. Explicit use of current methods for patient and public involvement and for design and testing of interventions provide a toolkit for this research. Observational research is needed in other groups. There is a potential in considering needs across patients' social networks rather than looking

How patient and carer expectations of orthodontic treatment vary with ethnicity.

PubMed

Sadek, Sarah; Newton, Tim; Sayers, Mark

2015-09-01

To investigate if the orthodontic treatment expectations of Black British children and their primary carers vary compared with White British children and their primary carers. A hospital orthodontic department (Queen Mary's Hospital, Sidcup, London, UK). Patients and their accompanying primary carers who had not received fixed orthodontic appliance treatment and were aged between 12 and 14 years old. Informed consent was obtained from 100 patients and their primary carers, who completed a psychometrically validated questionnaire, to measure their expectations before a new patient orthodontic consultation. This cohort consisted of 50 Black British patients and their primary carers and 50 White British patients and their primary carers. Mean responses from patients and their primary carers for each ethnic group were compared using the independent groups t-test. Significant statistical differences were found between the two ethnic groups. The greatest statistical differences occurred between Black British patients and their primary carer and Black British primary carers and White British primary carers. Patients tended to have similar orthodontic expectations. There were no statistical significant differences in expectations between White British children and their primary carers. Differences in expectations of orthodontic treatment were more common between Black British and White British primary carers, than their children. White British primary carers had higher expectations at their child's initial appointment and expected dental extractions to be part of the orthodontic treatment plan. These differences have some implications for the provision of orthodontic care. A clinicians understanding of patients and their primary carer's expectations at the start of treatment can help in the quality and delivery of orthodontic care provided.

Cost effectiveness of a manual based coping strategy programme in promoting the mental health of family carers of people with dementia (the START (STrAtegies for RelaTives) study): a pragmatic randomised controlled trial

PubMed Central

King, Derek; Romeo, Renee; Schehl, Barbara; Barber, Julie; Griffin, Mark; Rapaport, Penny; Livingston, Debbie; Mummery, Cath; Walker, Zuzana; Hoe, Juanita; Sampson, Elizabeth L; Cooper, Claudia; Livingston, Gill

2013-01-01

Objective To assess whether the START (STrAtegies for RelatTives) intervention added to treatment as usual is cost effective compared with usual treatment alone. Design Cost effectiveness analysis nested within a pragmatic randomised controlled trial. Setting Three mental health and one neurological outpatient dementia service in London and Essex, UK. Participants Family carers of people with dementia. Intervention Eight session, manual based, coping intervention delivered by supervised psychology graduates to family carers of people with dementia added to usual treatment, compared with usual treatment alone. Primary outcome measures Costs measured from a health and social care perspective were analysed alongside the Hospital Anxiety and Depression Scale total score (HADS-T) of affective symptoms and quality adjusted life years (QALYs) in cost effectiveness analyses over eight months from baseline. Results Of the 260 participants recruited to the study, 173 were randomised to the START intervention, and 87 to usual treatment alone. Mean HADS-T scores were lower in the intervention group than the usual treatment group over the 8 month evaluation period (mean difference −1.79 (95% CI −3.32 to −0.33)), indicating better outcomes associated with the START intervention. There was a small improvement in health related quality of life as measured by QALYs (0.03 (−0.01 to 0.08)). Costs were no different between the intervention and usual treatment groups (£252 (−28 to 565) higher for START group). The cost effectiveness calculations suggested that START had a greater than 99% chance of being cost effective compared with usual treatment alone at a willingness to pay threshold of £30 000 per QALY gained, and a high probability of cost effectiveness on the HADS-T measure. Conclusions The manual based coping intervention START, when added to treatment as usual, was cost effective compared with treatment as usual alone by reference to both outcome measures

What is the effectiveness of the support worker role for people with dementia and their carers? A systematic review.

PubMed

Goeman, Dianne; Renehan, Emma; Koch, Susan

2016-07-19

Dementia is progressive in nature and the associated functional decline inevitably leads to increasing dependence on others in areas of daily living. Models of support have been developed and implemented to assist with adjusting to living with memory loss and functional decline; to navigate the health and aged care system; and to access services. We undertook a systematic review of international literature on key worker type support roles to identify essential components and ascertain how the role can be best utilised to assist community-dwelling people with dementia and their carers. This review of support roles is the first to our knowledge to include both quantitative and qualitative studies and all models of support. A systematic review of studies written in English and published between January 2003 and December 2014. Data sources were Medline, PsychInfo and CINAHL, internet, expert consultation and reference lists of included studies. After screening articles to ensure that they reported on a key worker type support role, involved carers and or people with dementia living at home and removing duplicates, eligible papers were appraised and evaluated. Thirty six studies were eligible for inclusion in the review. Eligible studies were divided into type of support roles and study type. The heterogeneity of included studies and high risk of bias made a meta-analysis inappropriate and it was therefore difficult to draw overall conclusions. However, essential components shared across support worker models that demonstrated a positive impact on carer burden and improved quality of life included: long term intervention, face to face contact, individualised education and support based on needs, multi-disciplinary teams, collaborative input, health/clinical background of support workers, ongoing follow up and inter professional and inter-sectoral collaborations. There was a lack of studies assessing cost-effectiveness. Studies that include a high quality evaluation of

Does Resilience Mediate Carer Distress After Head and Neck Cancer?

PubMed

Simpson, Grahame K; Dall'Armi, Luci; Roydhouse, Jessica K; Forstner, Dion; Daher, Maysaa; Simpson, Teresa; White, Kathryn J

2015-01-01

Caring for patients with head and neck cancer (HNC) can have significant negative psychological and practical impact; however, some carers seem able to cope effectively. Little research has investigated this resilience among carers. The objective of this study was to investigate the resilience levels among carers of patients with HNC. Carers (n = 51) from 2 cancer services in New South Wales completed the Resilience Scale (RS), the Head and Neck Information Needs Questionnaire, and the Hospital Anxiety and Depression Scale. Hospital Anxiety and Depression Scale cutoff scores (>8) were used to classify carers with clinically significant levels of anxiety or depression. The majority of carers (67% [34/51]) reported moderately high to high resilience. Rates of anxiety and depression among carers were 27.4% and 9.8%, respectively. Higher resilience scores were significantly correlated with lower anxiety and depression scores, as well as increasing age. Resilience Scale scores were independent of the severity of the HNC. There were no significant correlations between RS scores and Head and Neck Information Needs Questionnaire scores. Finally, increasing RS scores were associated with a decreasing probability of possible anxiety or depression. These results indicate that higher resilience in carers of HNC patients was associated with lower levels of psychological distress. Further investigation into the relationship between resilience and carer psychological wellbeing is warranted. If further evidence supports the findings of this study, then investigating ways to build resilience will be an important clinical option for reducing carer morbidity associated with anxiety and depression. The RS could be used to assess resilience levels among carers of HNC patients.

Moderated online social therapy for carers of young people recovering from first-episode psychosis: study protocol for a randomised controlled trial.

PubMed

Gleeson, John; Lederman, Reeva; Herrman, Helen; Koval, Peter; Eleftheriadis, Dina; Bendall, Sarah; Cotton, Sue M; Alvarez-Jimenez, Mario

2017-01-17

First-episode psychosis most often has its onset during late adolescence. In caring for the young person, families endure high levels of stress and depression. Meanwhile, the social networks of families often erode. Our group has previously shown that family cognitive behaviour therapy (CBT) leads to significantly improved perceived stress compared with specialist first-episode treatment as usual; however, there are well-known barriers to the dissemination of effective family interventions. To address this, we have developed a novel online intervention entitled 'Altitudes' that fully integrates purpose-built online social networking, expert and peer moderation, and evidence-based psychoeducation within a single application. The primary aim of this trial is to evaluate the effectiveness of Altitudes in reducing stress in carers over a 6-month period. We describe here a single-blinded cluster randomised controlled trial (cRCT) with permutated blocks. The clusters comprise individual families. The two treatment conditions include Altitudes plus Specialist Treatment as Usual (STAU) and STAU alone. Altitudes involves participation in our novel online programme whereas STAU comprises specialist family work at the Early Psychosis Prevention and Intervention Centre (EPPIC), Melbourne, Australia. We aim to recruit 160 family members of young, 15-27 year-old, patients registered for treatment for first-episode psychosis (FEP) at EPPIC. The design includes two assessment time points, namely, baseline and 6-month follow-up. The study is due for completion within 2 years including an 18-month recruitment period and a 6-month treatment phase. The primary outcome is carers' perceived stress at 6 months. Secondary outcome measures include a biomarker of stress, depressive symptoms, worry, substance use, loneliness, social support, satisfaction with life, and a range of measures that tap into coping resources. We seek to gain a dynamic picture of carer stress through our

The development and validation of a carer questionnaire to assess cognitive function in neuropsychiatric patients.

PubMed

Randhawa, Sharan; Walterfang, Mark; Miller, Kathryn; Scholes, Amelia; Mocellin, Ramon; Velakoulis, Dennis

2007-07-01

The carer history is an integral part of the assessment of patients with cognitive impairment. We aimed to develop a comprehensive yet concise carer questionnaire, the CogRisk, which captures actuarial risk variables for cognitive impairment in addition to key symptoms suggestive of cognitive decline in a number of cognitive domains, and to then assess its validity and reliability in a neuropsychiatric population. Carers of patients assessed for cognitive impairment completed the CogRisk, and patients were clinically assessed using the Mini-Mental State Examination (MMSE) and Neuropsychiatry Unit COGnitive assessment tool (NUCOG). Reliability was assessed using test-retest and interrater measures and measures of internal consistency. Construct and concurrent validity was assessed using correlation between total and subscale scores on the CogRisk, total scores on the NUCOG and MMSE, and subscale scores on the NUCOG. Predictive validity was determined using measures of sensitivity and specificity and using receiver operating characteristic (ROC) methods. The CogRisk was completed by all carers in less than 10 min. The total CogRisk score correlated significantly with total MMSE and NUCOG scores (r=-0.511 and -0.563, respectively) and remained highly significant when age and education were controlled for. Internal consistency of CogRisk items was high (alpha=0.943). Intrarater reliability of the CogRisk was high with an intraclass correlation coefficient of .978 (P<.001), and interrater reliability between carers was also high at 0.868 (P<.05). Sensitivity and specificity for the detection of dementia were .70 and .73, respectively, with area under the ROC curve not significantly different from that of the MMSE or NUCOG. The CogRisk is a brief carer-rated tool of a patient's cognitive functioning developed for use within a neuropsychiatric setting. It exhibited good concurrent validity, internal consistency, and interrater and intrarater reliability. The CogRisk also

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

PubMed

Ervin, Kaye; Reid, Carol

2015-12-01

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

Carers' ambivalence in conflict situations with older persons.

PubMed

Breitholtz, Agneta; Snellman, Ingrid; Fagerberg, Ingegerd

2013-03-01

The aim of this study was to illuminate the meaning of professional carers' experiences in caring situations when a conflict of interest arises with the older person receiving care. The findings reveal the complexity of the carers' ambivalence when facing a conflict of interest, weighing up between the older persons' right to self-determination and external demands. The carers are alone in their ambivalence, and the conclusion is that they need help and support to be more present in the encounter. The implication for this study is to focus on care as a person-centered practice and to focus on people as interdependent on support carers to maintain older people's right to self-determination in the relationship.

Abuse of elderly people by their carers.

PubMed Central

Homer, A C; Gilleard, C

1990-01-01

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

What are families most grateful for after receiving palliative care? Content analysis of written documents received: a chance to improve the quality of care.

PubMed

Aparicio, María; Centeno, Carlos; Carrasco, José Miguel; Barbosa, Antonio; Arantzamendi, María

2017-09-06

Family members are involved in the care of palliative patients at home and therefore, should be viewed as important sources of information to help clinicians better understand the quality palliative care service patients receive. The objective of the study was to analyse what is valued most by family carers undergoing bereavement of a palliative care home service in order to identify factors of quality of care. Qualitative exploratory study based on documentary analysis. Content analysis of 77 gratitude documents received over 8 years by a palliative home service in Odivelas, near Lisbon (Portugal) was undertaken, through an inductive approach and using investigator triangulation. Frequency of distinct categories was quantitatively defined. Three different content categories emerged from the analysis: a) Recognition of the care received and the value of particular aspects of care within recognised difficult situations included aspects such as kindness, listening, attention to the family, empathy, closeness, affection and the therapeutic relationships established (63/77 documents); b) Family recognition of the achievements of the palliative care team (29/77) indicated as relief from suffering for the patient and family, opportunity of dying at home, help in facing difficult situations, improvement in quality of life and wellbeing, and feeling of serenity during bereavement; c) Messages of support (45/77) related to the need of resources provided. The relational component emerges as an underlying key aspect of family carers' experience with palliative care home service. Family carers show spontaneous gratitude for the professionalism and humanity found in palliative care. The relational component of care emerges as key to achieve a high quality care experience of palliative care homes service, and could be one indicator of quality of palliative care.

Intelligent assistant carer for active aging

NASA Astrophysics Data System (ADS)

Bizjak, Jani; Gradišek, Anton; Stepančič, Luka; Gjoreski, Hristijan; Gams, Matjaž

2017-12-01

We present the concept of an Intelligent Assistant Carer system for the elderly, designed to help with active aging and to facilitate the interactions with carers. The system is modular, allowing the users to choose the appropriate functions according to their needs, and is built on an open platform in order to make it compatible with third-party products and services. Currently, the system consists of a wearable device (a smartwatch) and an internet portal that manages the data and takes care of the interactions between the user, the carers, and the support services. We present in detail one of the modules, i.e., fall detection, and the results of a pilot study for the system on 150 users over the course of 3 months.

Health status and coping strategies among older parent-carers of adults with intellectual disabilities in an Australian sample.

PubMed

Llewellyn, Gwynnyth; McConnell, David; Gething, Lindsay; Cant, Rosemary; Kendig, Hal

2010-01-01

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 adult son or daughter with intellectual disabilities. Health status using the SF-12 (Ware, Snow, Kosinski, & Gandek, 1993), caring stress using the CADI (Nolan, Grant, & Keady, 1998), and coping strategies using the CAMI (Nolan et al., 1998) were assessed in 64 older parent-carers of adults with intellectual disabilities. The self-reported health status of this sample of older parent-carers did not differ significantly from Australian population norms, with one exception. That is, the younger parent-carers in the sample (55-64 years) reported significantly poorer mental health. Better health was associated with having a partner, a larger and close support network of family, friends and neighbours, and a lower care-load. Overall, the study participants identified both satisfaction as well as stress associated with caring, a finding that runs counter to the common perception that being a carer is overwhelmingly burdensome. Common sources of stress were feeling helpless or not in control, and poor professional support. Analysis of older parent-carers coping strategies suggests that self-reliance, whether by choice or necessity, was the norm. The health status of older parent-carers may present less cause for concern than anecdotal reports suggest. That said, the strong self-reliance particularly of the older carers presents a challenge to service providers seeking to engage those whose situation appears to warrant support from the service system. Copyright © 2010 Elsevier Ltd. All rights reserved.

A cross-sectional study on experiences of young adult carers compared to young adult noncarers: parentification, coping and resilience.

PubMed

Boumans, Nicolle P G; Dorant, Elisabeth

2018-05-15

Most young carer studies on parentification, resilience and coping concentrated on child carers up to age 18 years, whereas the group of young adult caregivers (18-24 years) has been neglected. In our study, we focused on these young adult caregivers, who are in a life phase in which young people usually are distancing themselves from their families and are striving for autonomy and freedom. To explore young adult carers' perceptions of parentification, resilience and coping compared to young adult noncarers. Cross-sectional. In 2014/2015, data were collected on 297 healthcare students from a school for vocational education and a university in the Netherlands. A fully structured questionnaire was used. Young adult carers were compared with young adult noncarers on parentification, resilience and coping. Fifty-six students identified themselves as a carer: 40 vocational education students and 16 university students. Carers scored significantly higher than noncarers on three out of six parentification dimensions. No differences were found for resilience and problem-focused coping behaviour, whereas results for emotion-focused coping demonstrated a higher score for the carers compared to the noncarers. Although it is important to take care of the needs of all young carers, special attention should be given to those who are at the start of their adult lives, undergoing extensive changes and taking major decisions on study and career issues. Home-care professionals and school counsellors should be able to recognise this group and their needs and activate support from specialised services and significant others. © 2018 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.

Childhood disability in Turkana, Kenya: Understanding how carers cope in a complex humanitarian setting

PubMed Central

Nyapera, Velma; Mwenda, Victoria; Kisia, James; Rono, Hilary; Palmer, Jennifer

2016-01-01

Background Although the consequences of disability are magnified in humanitarian contexts, research into the difficulties of caring for children with a disability in such settings has received limited attention. Methods Based on in-depth interviews with 31 families, key informants and focus group discussions in Turkana, Kenya, this article explores the lives of families caring for children with a range of impairments (hearing, vision, physical and intellectual) in a complex humanitarian context characterised by drought, flooding, armed conflict, poverty and historical marginalisation. Results The challenging environmental and social conditions of Turkana magnified not only the impact of impairment on children, but also the burden of caregiving. The remoteness of Turkana, along with the paucity and fragmentation of health, rehabilitation and social services, posed major challenges and created opportunity costs for families. Disability-related stigma isolated mothers of children with disabilities, especially, increasing their burden of care and further limiting their access to services and humanitarian programmes. In a context where social systems are already stressed, the combination of these factors compounded the vulnerabilities faced by children with disabilities and their families. Conclusion The needs of children with disabilities and their carers in Turkana are not being met by either community social support systems or humanitarian aid programmes. There is an urgent need to mainstream disability into Turkana services and programmes. PMID:28730061

The Association of Health Literacy and Electronic Health Literacy With Self-Efficacy, Coping, and Caregiving Perceptions Among Carers of People With Dementia: Research Protocol for a Descriptive Correlational Study.

PubMed

Efthymiou, Areti; Middleton, Nicos; Charalambous, Andreas; Papastavrou, Evridiki

2017-11-13

In the last decade, electronic health (eHealth) literacy has attracted the attention of the scientific community, as it is associated with the self-management of patients with chronic diseases and the quality and cost of care. It is estimated that 80% of people with chronic diseases are cared for at home by a family member, friend, or relative. Informal carers are susceptible to physical and mental health problems, as well as social and financial hardships. Nevertheless, there seems to be a research gap in terms of carers' needs, skills, and available resources in the age of new technologies, with the vital role of eHealth literacy of the carers remaining unexplored. The aim of this study was to investigate the level of eHealth literacy and health literacy of primary and secondary carers of people with dementia, to explore the association between health and eHealth literacy, as well as their association with the caregiving variables: self-efficacy, coping, and caring perceptions. A sample of 200 primary carers (the carer who supports the people with dementia in everyday living) and 200 secondary carers (family member, friend, or other person in the social network assisting the primary carer in their role) will be recruited from dementia day care centers and Alzheimer's associations in Greece and Cyprus. The study will be a cross-sectional correlational descriptive study. Tools to be used include the eHealth Literacy Scale adapted for carers to measure eHealth literacy, European Health Literacy Survey Questionnaire 16 (HLS-EU-Q16), Single Item Literacy Screener, Revised Scale for Caregiving Self-Efficacy, Carers of Older People in Europe (COPE) index for caregiving perceptions, and COPE brief to measure selected coping strategies. Descriptive statistics will be reported, and correlations between different variables will be explored with parametric and nonparametric measures. As a preliminary study, the HLS-EU-Q16 has been validated in 107 older people. The internal

Development and validation of attitudes towards Recovery Questionnaire across Chinese people in recovery, their family carers, and service providers in Hong Kong.

PubMed

Mak, Winnie W S; Chan, Randolph C H; Yau, Sania S W

2018-05-29

Considering the lack of existing measures on attitudes toward personal recovery and the need to acknowledge the cultural milieu in recovery attitude assessment, the present study developed and validated the Attitudes towards Recovery Questionnaire (ARQ) in a sample of people in recovery of mental illness, family carers, and mental health service providers in Hong Kong. The ARQ was developed based on existing literature and measures of recovery, and focus group discussions with various stakeholders. Findings of the multi-sample confirmatory factor analyses supported a five-factor structure: (1) resilience as a person in recovery, (2) self-appreciation and development, (3) self-direction, (4) family involvement, and (5) social ties and integration. The ARQ was positively correlated with recovery outcomes, empowerment, recovery knowledge, and recovery orientation of mental health services. As a tool for examining recovery attitudes, the ARQ informs us of the mindset across stakeholders and areas that need enhancement to facilitate the recovery process. Copyright © 2018. Published by Elsevier B.V.

Parent-Related Stress of Male and Female Carers of Adolescents with Intellectual Disabilities and Carers of Children within the General Population: A Cross-Sectional Comparison.

PubMed

Patton, Kiri A; Ware, Robert; McPherson, Lyn; Emerson, Eric; Lennox, Nicholas

2018-01-01

Carers of children with intellectual disability show high rates of parent-related stress and are at an increased risk for deleterious physical and mental health. This study investigated the relationship between demographic and social characteristics and parenting stress, within two different cross-sectional samples of carers: those who care for an adolescent with an intellectual disability and carers from a population based sample. Participants were 1152 carers from the Household Income and Labour Dynamic in Australia study and 284 carers of adolescents with intellectual disabilities from the Ask study. The results supported previous research suggesting carers of children with intellectual disabilities experience high parent-related stress. The results also support the buffer model of social support, as high social support was related to lower parent-related stress. Self-rated prosperity, financial pressure and relationship status were also related to lower levels of parent-related stress. © 2016 John Wiley & Sons Ltd.

Constructing "Normal Childhoods": Young People Talk about Young Carers

ERIC Educational Resources Information Center

O'Dell, L.; Crafter, S.; de Abreu, G.; Cline, T.

2010-01-01

There has been a great deal of attention paid to young carers in recent research, social policy and service provision. In this paper we report on a survey and interview study of 46 young people aged 15 to 18, nine of whom had experience as young carers, to explore the ways in which young people construct the young carer and their disabled parent.…

Results and implications of the EU-project CARERS ‘Content materials to raise employability and reinforce skills of carers’

PubMed Central

Weber, Germain; Zeilinger, Elisabeth; Oppenauer, Claudia; Brehmer, Barbara

2009-01-01

Purpose The population, and needs, of informal carers is changing, reflecting not only the changing demographics across Europe, but also the unequal challenges and opportunities for education and training—and official approval of competences—across Europe for people involved in the care sector, formal as well as informal carers. Theory The objective of this European project (Austria, France, Lithuania Luxembourg, Poland and Spain) was to create, offer and evaluate an education and training programme specifically aimed at informal carers (e.g. family members), providing answers to meet their real needs in their support work as well as for their own emotional well-being. Therefore, project partners produced six innovative, online supported training modules (total 60 hours) for face-to-face delivery. Methods The presentation will highlight the development and the content of one training Module for older people with ‘intellectual disabilities’ more detailed. Results and conclusions All trainings were evaluated by the participants through pre/post questionnaires. The results of the trainings will be presented. Discussion The importance of trainings and support for informal carers will be discussed with special emphasis given on the fact that informal carers represent a most substantial economic resource for every country and its care system.

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…

[Memory Bistros to maintain social ties for Alzheimer patients and their carers].

PubMed

Koechlin, Christian

2010-01-01

More than twenty Memory Bistros in cafés situated in town centres across France provide a meeting place for people suffering from Alzheimer's disease and their family and friends. Overcoming their isolation, restoring, maintaining and reinforcing social ties, supporting carers, helping patients to express themselves are some of the objectives of these weekly get-togethers which are free to attend and offer a place of free expression.

Information needs of the informal carers of women treated for breast cancer.

PubMed

Beaver, Kinta; Witham, Gary

2007-02-01

Although the vital role of informal carers has been acknowledged in government policy documents in the UK, the information needs of informal carers are not well documented. There is also uncertainty about where carers get their information from and whether they are satisfied with the information they receive. This study aimed to examine the information needs and sources of information for informal carers in the acute cancer setting; the informal carers of a sample of women treated for breast cancer. Both quantitative and qualitative data were collected from semi-structured interviews with 50 informal carers. Measures of information needs and sources were administered in addition to an in-depth exploration of information needs. The priority information needs of carers related to cure, spread of disease and treatments, a similar profile to that found for women with breast cancer in previous work. The main source of information for carers was the person they were caring for, although written information was also valued. Health professionals need to ensure that patients are well informed so that patients can provide information for carers and also need to take advantage of any opportunities to directly assess the information needs of carers to enable them to be more effective in their caring role.

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

PubMed

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

2016-07-01

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

[Carers and the policy for autonomy].

PubMed

Naiditch, Michel

2016-03-01

Long-time invisible, the role of informal carers in providing assistance to elderly patients losing their autonomy is gaining recognition. A policy in favour of carers coordinated with that aimed at the people being cared for is necessary, but it is struggling to establish itself in France. Some progress can however be seen with the French bill on adapting society to the ageing of the population. Copyright © 2016 Elsevier Masson SAS. All rights reserved.

The effect of a brief family intervention on primary carer's functioning and their schizophrenic relatives levels of psychopathology in India.

PubMed

Devaramane, Virupaksha; Pai, Nagesh B; Vella, Shae-Leigh

2011-09-01

This study examined the short term effects of a brief familial intervention on schizophrenic the patient's levels of psychopathology and their primary caregiver's functioning in India. Caregiver functioning was measured by the caregiver's levels of burden and coping along with the patient's perceived level of expressed emotion (EE). The participants were 18 schizophrenic patients and their related primary carer from a medical facility in India. The patients' levels of psychopathology and EE were assessed at baseline and at completion of the study with the Positive and Negative Syndrome Scale (PANSS; Kay et al., 1987) and the Family Emotional Involvement And Criticism Scale (FEICS; Shields et al., 1992), respectively. The primary caregiver's levels of burden and coping were also measured at baseline and upon completion of the study by the Burden Assessment Scale (BAS; Thara et al., 1998) and the Family Crisis Oriented Personal Evaluation Scale (F-COPES; McCubbin et al., 1981), respectively. The brief intervention was comprised of 3 one hour sessions aimed at educating the primary caregiver and patient about schizophrenia; along with improving their communication, problem solving skills and expression of emotions. A significant improvement was found between baseline and the final 3-month follow-up on measures of psychopathology for the patients, as well as family functioning for both the caregivers and patients. The implications of the findings are discussed, along with future research directions. Crown Copyright © 2011. Published by Elsevier B.V. All rights reserved.

Carer preferences for home support services in later stage dementia.

PubMed

Kampanellou, Eleni; Chester, Helen; Davies, Linda; Davies, Sue; Giebel, Clarissa; Hughes, Jane; Challis, David; Clarkson, Paul

2017-11-01

To examine the relative importance of different home support attributes from the perspective of carers of people with later-stage dementia. Preferences from 100 carers, recruited through carers' organisations, were assessed with a Discrete Choice Experiment (DCE) survey, administered online and by paper questionnaire. Attributes were informed by an evidence synthesis and lay consultations. A conditional logit model was used to estimate preference weights for the attributes within a home support 'package'. The most preferred attributes were 'respite care, available regularly to fit your needs' (coefficient 1.29, p = < 0.001) and 'home care provided regularly for as long as needed' (coefficient 0.93, p = < 0.001). Cost had a significant effect with lower cost packages preferred. Findings were similar regardless of the method of administration, with respite care considered to be the most important attribute for all carers. Carers reported that completing the DCE had been a positive experience; however, feedback was mixed overall. These carer preferences concur with emerging evidence on home support interventions for dementia. Respite care, home care and training on managing difficulties provided at home are important components. Carers' preferences revealed the daily challenges of caring for individuals with later stage dementia and the need for tailored and specialised home support.

Dementia Guide for Carers and Care Providers.

PubMed

2017-05-10

This app is for carers of people with dementia. Developed by Health Education England's Thames Valley team in partnership with the University of Reading and in collaboration with healthcare professionals and carers, it offers practical information to support users' understanding of the progressive nature of dementia and the challenges of caring for someone with the condition.

Caring for Carers of People with Dementia: A Protocol for Harnessing Innovation Through Deploying Leading Edge Technologies to Enable Virtual Support Groups and Services.

PubMed

Parkinson, Lynne; Banbury, Annie; Livingstone, Anne; Gordon, Steven; Ray, Biplob; Byrne, Louise; Nancarrow, Susan; Doran, Chris; McAllister, Margaret; Petersen, Carrie; Pedell, Sonja; Wood, Denise

2018-01-01

In rural Australia, knowledge and utilisation of support by informal carers is lacking. During the caregiving period, socioemotional support from family and friends plays an important role in sustaining caregiving activities. Post-care, these social networks facilitate adjustment to role change and dealing with grief. Developing and improving access to peer support to enable carers to effectively cope with the challenges of caring may positively influence their caring experience. The primary objective of this project is to examine the response of isolated rural carers for older people with dementia to a videoconference (VC) based peer support and information program. Will participation in the program improve self-efficacy, quality of life, and mental health? Secondary objectives are to develop a VC based peer support program for isolated rural carers for older people with dementia, using a co-design approach; and to assess the feasibility of VC technology for enhancing social support to family caregivers in their homes. This project will collaboratively co-design and evaluate a facilitated VC peer support and information program to carers of people with dementia within rural areas. Carers will be recruited through community health and care providers. Program development will use an information sharing approach to facilitate social interaction. A focus of the project is to use off-the-shelf technology which will be more accessible than specialised bespoke solutions that are currently popular in this area of research. A mixed methods repeated measures randomized wait list design will be used to evaluate the project. The primary outcomes are self-efficacy, quality of life, and mental health. Secondary outcomes are perceived social support and user satisfaction with the technology, and intention to continue VC interaction.

Qualitative focus group study investigating experiences of accessing and engaging with social care services: perspectives of carers from diverse ethnic groups caring for stroke survivors.

PubMed

Greenwood, Nan; Holley, Jess; Ellmers, Theresa; Mein, Gill; Cloud, Geoffrey

2016-01-29

Informal carers, often family members, play a vital role in supporting stroke survivors with post-stroke disability. As populations age, numbers of carers overall and those from minority ethnic groups in particular, are rising. Carers from all ethnic groups, but especially those from black and minority ethnic groups frequently fail to access support services, making understanding their experiences important. The study therefore explored the experiences of carers of stroke survivors aged 45+ years from 5 ethnic groups in accessing and receiving social care services after hospital discharge. This qualitative study used 7 recorded focus groups with informal carers of stroke survivors. Data were analysed thematically focusing on similarities and differences between ethnic groups. Carers were recruited from voluntary sector organisations supporting carers, stroke survivors and black and minority ethnic groups in the UK. 41 carers from 5 ethnic groups (Asian Indian, Asian Pakistani, black African, black Caribbean, white British) participated in the focus groups. Several interconnected themes were identified including: the service gap between hospital discharge and home; carers as the best person to care and cultural aspects of caring and using services. Many themes were common to all the included ethnic groups but some related to specific groups. Across ethnic groups there were many similarities in the experiences of people caring for stroke survivors with complex, long-term care needs. Accessing services demands effort and persistence on carers' part. If carers believe services are unsatisfactory or that they, rather than formal services, should be providing support for stroke survivors, they are unlikely to persist in their efforts. Cultural and language differences add to the challenges black and minority ethnic group carers face. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

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

The Effectiveness of Paid Services in Supporting Unpaid Carers' Employment in England.

PubMed

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

2015-07-01

This paper explores the effectiveness of paid services in supporting unpaid carers' employment in England. There is currently a new emphasis in England on 'replacement care', or paid services for the cared-for person, as a means of supporting working carers. The international evidence on the effectiveness of paid services as a means of supporting carers' employment is inconclusive and does not relate specifically to England. The study reported here explores this issue using the 2009/10 Personal Social Services Survey of Adult Carers in England . The study finds a positive association between carers' employment and receipt of paid services by the cared-for person, controlling for covariates. It therefore gives support to the hypothesis that services for the cared-for person are effective in supporting carers' employment. Use of home care and a personal assistant are associated on their own with the employment of both men and women carers, while use of day care and meals-on-wheels are associated specifically with women's employment. Use of short-term breaks are associated with carers' employment when combined with other services. The paper supports the emphasis in English social policy on paid services as a means of supporting working carers, but questions the use of the term 'replacement care' and the emphasis on 'the market'.

Feasibility Testing and Refinement of a Supportive Educational Intervention for Carers of Patients with High-Grade Glioma - a Pilot Study.

PubMed

Halkett, Georgia K B; Lobb, Elizabeth A; Miller, Lisa; Shaw, Thérèse; Moorin, Rachael; Long, Anne; King, Anne; Clarke, Jenny; Fewster, Stephanie; Nowak, Anna K

2017-02-11

The aim of this pilot study was to test the feasibility and acceptability of a family carer intervention for carers of patients with high-grade glioma (HGG). The intervention consisted of: (1) an initial telephone assessment of carer needs; (2) a personalised tabbed resource file; (3) nurse-led home visit; and (4) ongoing telephone support. Two consumer representatives reviewed the intervention resources. The intervention was then piloted with participants who were the primary carer for patients undergoing treatment for HGG in Western Australia. Two consumers provided feedback on the resource, and 10 carers participated in the pilot. Positive feedback was received about the resource manual and intervention. Suggestions were also made for changes which were implemented into the trial. The surveys were shortened based on feedback. Participants identified a large range of issues during nursing assessments which would not otherwise be identified or addressed for carers receiving routine care. As a result of providing the intervention, the nurse was able to make referrals to address needs that were identified. This pilot study enabled us to refine and test the Care-IS intervention and test the feasibility and acceptability of proposed survey instruments. We were also able to estimate recruitment and retention and the overall study timeline required for the randomised controlled trial we are now conducting. It has also demonstrated the role of the nurse who delivered the intervention and allowed us to refine communication and referral pathways.

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

PubMed

Koo, Kevin

2012-11-01

Infrequent use of and delayed presentation to professional services have increased the burden of mental illness in minority ethnic communities. Within the growing literature on informal carers, the Chinese remain relatively unstudied. This article reports a qualitative study of 14 carers to explore illness representations of affective disorders in British Chinese communities. Firstly, it places the study within a theoretical framework that permits an understanding of mental health and illness in different sociocultural belief systems. Next, it presents carers' narrative accounts in conceptualising mental illness, including its causes, manifestations and impact on patients and carers, and contextualises the findings within the existing literature. Finally, the article examines how the caring role may be constructed from the broader social experience of carers and their relationships within a community structure that values the group over the individual. Coping mechanisms are discussed in the context of the practice of caring as a moral obligation and of policy implications for more culturally appropriate support services for both Chinese carers and mental health patients. © 2012 The Author. Sociology of Health & Illness © 2012 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.

Carers' Beliefs about Counselling: A Community Participatory Study in Wales

ERIC Educational Resources Information Center

Waters, Rachel; Spong, Sheila; Morgan, Janet; Kemp-Philp, Chris

2018-01-01

This interpretivist community participatory study explores carers' beliefs about the potential usefulness of counselling in relation to the caring role. Twenty semi-structured interviews with carers were transcribed and analysed thematically. All participants thought counselling could potentially be helpful to carers, but their ideas about the…

Carers' perspectives of respite care in Australia: an evaluative study.

PubMed

O'Connell, Beverly; Hawkins, Mary; Ostaszkiewicz, Joan; Millar, Lynne

2012-04-01

Caring for someone with dementia is burdensome and challenging. In Australia, respite services help carers to cope with these demands. In this descriptive study, 62 carers of people with dementia provided information on their use of respite care, its effectiveness and their satisfaction with services provided during the preceding 12 months. Results indicated that carers used day centre, in-home, residential, regular outings and cottage care. The main reasons for use were to assist with managing care, take a break, or attend to health problems. Although 78% of carers rated respite as beneficial to their care recipients, most suggested areas that required attention. Improvements included the need for more time and flexibility, better quality and more permanent staff, improved communication, bureaucracy, administration and affordability. Respite providers need to recognize these limitations and develop strategies to improve the delivery of diverse respite care for carers of people with dementia.

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

Do stress and support matter for caring? The role of perceived stress and social support on expressed emotion of carers of persons with first episode psychosis.

PubMed

Sadath, Anvar; Muralidhar, D; Varambally, Shivarama; Gangadhar, B N; Jose, Justin P

2017-02-01

Caring for a person with first episode psychosis (FEP) is a challenging and distressing task for the carers. The carers' stress in the early stage of psychosis can increase their expressed emotion (EE) while social support is hypothesized to decrease EE. However, the influence of stress and social support on carers' EE is not well understood in FEP. To examine how the stress and social support shape expressed emotion in the carers of FEP. Seventy one carers of the patients with non-affective FEP were recruited from the inpatient psychiatry ward of a tertiary mental health care center in South India. The family questionnaire, perceived stress scale and multidimensional scale of perceived social support were used to measure their EE, stress and social support respectively. Carers experienced high level of perceived stress, EE and poor social support. Perceived stress significantly increased EE (β=0.834; p<0.001) and social support did not significantly influence EE (β=-0.065; p>0.05). Perceived stress predicted 76 percent of the variance on EE (Adjusted R 2 =0.761). The results emphasize high level of stress and EE in carers of patients with FEP that implies the need for appropriate psychosocial interventions to manage their stress. Copyright © 2016 Elsevier B.V. All rights reserved.

Family support for stroke: a randomised controlled trial.

PubMed

Mant, J; Carter, J; Wade, D T; Winner, S

2000-09-02

Attention is currently focused on family care of stroke survivors, but the effectiveness of support services is unclear. We did a single-blind, randomised, controlled trial to assess the impact of family support on stroke patients and their carers. Patients with acute stroke admitted to hospitals in Oxford, UK, were assigned family support or normal care within 6 weeks of stroke. After 6 months, we assessed, for carers, knowledge about stroke, Frenchay activities index, general health questionnaire-28 scores, caregiver strain index, Dartmouth co-op charts, short form 36 (SF-36), and satisfaction scores, and, for patients, knowledge about stroke and use of services, Barthel index, Rivermead mobility index, Frenchay activities index, London handicap scale, hospital anxiety and depression scales, Dartmouth co-op charts, and satisfaction. 323 patients and 267 carers were followed up. Carers in the intervention group had significantly better Frenchay activities indices (p=0.03), SF-36 scores (energy p=0.02, mental health p=0.004, pain p=0.03, physical function p=0.025, and general health perception p=0.02), quality of life on the Dartmouth co-op chart (p=0.01), and satisfaction with understanding of stroke (82 vs 71%, p=0.04) than those in the control group. Patients' knowledge about stroke, disability, handicap, quality of life, and satisfaction with services and understanding of stroke did not differ between groups. Fewer patients in the intervention group than in the control group saw a physiotherapist after discharge (44 vs 56%, p=0.04), but use of other services was similar. Family support significantly increased social activities and improved quality of life for carers, with no significant effects on patients.

"Family Matters": A Systematic Review of the Evidence For Family Psychoeducation For Major Depressive Disorder.

PubMed

Brady, Pamela; Kangas, Maria; McGill, Katherine

2017-04-01

The first aim of this systematic review was to evaluate the evidence for family psychoeducation (FPE) interventions for major depressive disorder (MDD). A second aim was to compare the efficacy of different modes of delivering face-to-face FPE interventions. Ten studies (based on nine distinct samples) were identified comprising four single-family studies, four multifamily studies, one single versus multifamily comparative study, and one peer-led, mixed-diagnosis study. Seven studies measured patient functioning and six reported positive outcomes. Six studies measured carer's well-being and four reported positive outcomes. Results provide preliminary evidence that FPE leads to improved outcomes for patient functioning and family-carer's well-being for persons with depression. The implications for future development and delivery of FPE interventions for MDD are discussed. © 2016 American Association for Marriage and Family Therapy.

[Family care provided by immigrant women and its impact on the quality of care and health].

PubMed

Casado-Mejía, Rosa; Ruiz-Arias, Esperanza; Solano-Parés, Ana

2012-01-01

To understand the effects of care within the family provided by live-in female immigrants on elderly dependents and their families and the carers themselves in Seville (Spain). We designed a qualitative study using in-depth interviews of key informants, immigrant care workers, elderly dependents and their families, and discussion groups composed of health professionals. The study was carried out in Seville between 2006 and 2008. The observation unit consisted of the families of elderly dependents with a live-in female immigrant care worker. The analysis units were health, care, dependence, gender, ethnicity and social class. Category analysis was carried out using QSR-NUD*ISTVivo1.3. After saturation, we triangulated among disciplines, researchers, sources and techniques to validate the results. The most important factors for carers' health were the migration process and care tasks. Interpersonal relationships constituted the principal factor affecting the health of all involved. The care tasks provided by immigrant women, together with the migration process, have an important impact on their health. Good and egalitarian interpersonal relationships are a protective factor for health. Copyright © 2011 SESPAS. Published by Elsevier Espana. All rights reserved.

Do Family Interventions Improve Outcomes in Early Psychosis? A Systematic Review and Meta-Analysis

PubMed Central

Claxton, Melanie; Onwumere, Juliana; Fornells-Ambrojo, Miriam

2017-01-01

Family interventions for psychosis (FIp) are effective in reducing service user relapse and carer distress in people with schizophrenia-spectrum conditions. Several treatment and best practice guidelines recommend FIp for all people with schizophrenia. However, outcome findings in relation to early psychosis groups have been inconsistent. The current paper reports a systematic review and meta-analyses of articles that evaluated FIp in early psychosis with a clearly defined comparison group. A combination of electronic database searches (using PsychINFO, Medline, and CENTRAL), citation searches and hand searches of key journals and reviews was conducted. Peer-reviewed articles published in English from database inception to June 2016 were included. Methodological quality was assessed using the Effective Public Health Practice Project Quality Assessment Tool (EPHPP). Seventeen papers from 14 studies met inclusion criteria for review, the overall quality of which was moderate. Meta-analytic synthesis showed that FIp improved service user functioning and reduced the likelihood of relapse by the end of treatment. Psychotic symptoms were significantly reduced in the FIp group at follow up, but this was not evident at end of treatment. In terms of FIp target mechanisms, carers receiving FIp were more likely to shift from high to low expressed emotion and less likely to report patient focused criticism or engage in conflict communication than carers randomized to standard care. Carer burden and well-being were improved by the end of treatment but gains were not sustained at follow up. FIp had no impact on carer emotional over-involvement. The findings indicate that FIp is an effective intervention for early psychosis service users and their relatives. However, further research is required to establish which key therapeutic components of FIp are most effective for whom, in addition to understanding the mechanisms by which FIp might affect positive change. PMID:28396643

The study protocol of a cluster-randomised controlled trial of family-mediated personalised activities for nursing home residents with dementia.

PubMed

van der Ploeg, Eva S; Camp, Cameron J; Eppingstall, Barbara; Runci, Susannah J; O'Connor, Daniel W

2012-01-12

Following admission to a nursing home, the feelings of depression and burden that family carers may experience do not necessarily diminish. Additionally, they may experience feelings of guilt and grief for the loss of a previously close relationship. At the same time, individuals with dementia may develop symptoms of depression and agitation (BPSD) that may be related to changes in family relationships, social interaction and stimulation. Until now, interventions to alleviate carer stress and BPSD have treated carers and relatives separately rather than focusing on maintaining or enhancing their relationships. One-to-one structured activities have been shown to reduce BPSD and also improve the caring experience, but barriers such as a lack of resources impede the implementation of activities in aged care facilities. The current study will investigate the effect of individualised activities based on the Montessori methodology administered by family carers in residential care. We will conduct a cluster-randomised trial to train family carers in conducting personalised one-to-one activities based on the Montessori methodology with their relatives. Montessori activities derive from the principles espoused by Maria Montessori and subsequent educational theorists to promote engagement in learning, namely task breakdown, guided repetition, progression in difficulty from simple to complex, and the careful matching of demands to levels of competence. Persons with dementia living in aged care facilities and frequently visiting family carers will be included in the study. Consented, willing participants will be randomly assigned by facility to a treatment condition using the Montessori approach or a control waiting list condition. We hypothesise that family carers conducting Montessori-based activities will experience improvements in quality of visits and overall relationship with the resident as well as higher self-rated mastery, fewer depressive symptoms, and a better

The study protocol of a cluster-randomised controlled trial of family-mediated personalised activities for nursing home residents with dementia

PubMed Central

2012-01-01

Background Following admission to a nursing home, the feelings of depression and burden that family carers may experience do not necessarily diminish. Additionally, they may experience feelings of guilt and grief for the loss of a previously close relationship. At the same time, individuals with dementia may develop symptoms of depression and agitation (BPSD) that may be related to changes in family relationships, social interaction and stimulation. Until now, interventions to alleviate carer stress and BPSD have treated carers and relatives separately rather than focusing on maintaining or enhancing their relationships. One-to-one structured activities have been shown to reduce BPSD and also improve the caring experience, but barriers such as a lack of resources impede the implementation of activities in aged care facilities. The current study will investigate the effect of individualised activities based on the Montessori methodology administered by family carers in residential care. Methods/Design We will conduct a cluster-randomised trial to train family carers in conducting personalised one-to-one activities based on the Montessori methodology with their relatives. Montessori activities derive from the principles espoused by Maria Montessori and subsequent educational theorists to promote engagement in learning, namely task breakdown, guided repetition, progression in difficulty from simple to complex, and the careful matching of demands to levels of competence. Persons with dementia living in aged care facilities and frequently visiting family carers will be included in the study. Consented, willing participants will be randomly assigned by facility to a treatment condition using the Montessori approach or a control waiting list condition. We hypothesise that family carers conducting Montessori-based activities will experience improvements in quality of visits and overall relationship with the resident as well as higher self-rated mastery, fewer depressive

Mental Wellbeing of Family Members of Autistic Adults.

PubMed

Herrema, Renske; Garland, Deborah; Osborne, Malcolm; Freeston, Mark; Honey, Emma; Rodgers, Jacqui

2017-11-01

Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer.

The Association of Health Literacy and Electronic Health Literacy With Self-Efficacy, Coping, and Caregiving Perceptions Among Carers of People With Dementia: Research Protocol for a Descriptive Correlational Study

PubMed Central

2017-01-01

Background In the last decade, electronic health (eHealth) literacy has attracted the attention of the scientific community, as it is associated with the self-management of patients with chronic diseases and the quality and cost of care. It is estimated that 80% of people with chronic diseases are cared for at home by a family member, friend, or relative. Informal carers are susceptible to physical and mental health problems, as well as social and financial hardships. Nevertheless, there seems to be a research gap in terms of carers’ needs, skills, and available resources in the age of new technologies, with the vital role of eHealth literacy of the carers remaining unexplored. Objective The aim of this study was to investigate the level of eHealth literacy and health literacy of primary and secondary carers of people with dementia, to explore the association between health and eHealth literacy, as well as their association with the caregiving variables: self-efficacy, coping, and caring perceptions. Methods A sample of 200 primary carers (the carer who supports the people with dementia in everyday living) and 200 secondary carers (family member, friend, or other person in the social network assisting the primary carer in their role) will be recruited from dementia day care centers and Alzheimer’s associations in Greece and Cyprus. The study will be a cross-sectional correlational descriptive study. Tools to be used include the eHealth Literacy Scale adapted for carers to measure eHealth literacy, European Health Literacy Survey Questionnaire 16 (HLS-EU-Q16), Single Item Literacy Screener, Revised Scale for Caregiving Self-Efficacy, Carers of Older People in Europe (COPE) index for caregiving perceptions, and COPE brief to measure selected coping strategies. Descriptive statistics will be reported, and correlations between different variables will be explored with parametric and nonparametric measures. Results As a preliminary study, the HLS-EU-Q16 has been

The effectiveness of an Internet support forum for carers of people with dementia: a pre-post cohort study.

PubMed

McKechnie, Vicky; Barker, Chris; Stott, Josh

2014-02-28

The well-being of informal carers of people with dementia is an important public health issue. Caring for an elderly relative with dementia may be burdensome and stressful, and can negatively affect the carer's social, family, and professional life. The combination of loss, the physical demands of caregiving, prolonged distress, and biological vulnerabilities of older carers may compromise their physical health, increase social isolation, and increase the risk of anxiety and depressive disorders. Caregiver stress is also linked to negative outcomes for the recipient of care and costs to society, including increased nursing home and hospital admissions. Consequently, carer support interventions are an important component of dementia care. Computer-mediated carer support offers a range of potential advantages compared to traditional face-to-face support groups, including accessibility and the possibility of tailoring to meet individual needs, but there has been little research on its effectiveness so far. This mixed-methods study examined the impact of a well-respected UK-based online support forum for carers of people with dementia. A total of 61 new forum users completed measures of anxiety (7-item Generalized Anxiety Disorder scale, GAD-7), depression (9-item Patient Health Questionnaire, PHQ-9), and quality of relationship with the person with dementia (Scale for the Quality of the Current Relationship in Caregiving, SQCRC), at baseline and again after 12 weeks of forum usage, within a pre-post design. In addition, 8 participants were interviewed about their experiences with using the forum. There was an improvement in the quality of the relationship with the person with dementia (SQCRC: P=.003). There was no change in users' depression (PHQ-9) or anxiety (GAD-7) over the 12-week study period. Interview participants reported a range of positive experiences and benefits from using the forum. Limited negative experiences were also reported. Many of the reported

Interactions between parents/carers of pre-school children and pharmacy staff when buying non-prescription medicines.

PubMed

Boardman, Helen F; Gray, Nicola J; Symonds, B Sue

2011-10-01

Little is known about the interactions between pharmacy staff and parents/carers who buy nonprescription medicines for children. Responsibility for choice and administration of children's medicines falls to the parent/carer. Pharmacy advice should support safe and effective use of medicines for children. This paper explores the interactions between pharmacy staff and purchasers of children's medicines, in terms of questioning and advice giving. Thirty-nine community pharmacies across four Primary Care Trusts (PCTs) in England. A self-completion survey and a subset of semi-structured telephone interviews were undertaken with parents/carers buying oral medicines for children aged 0-4 years. Frequency and type of questioning and advice given by pharmacy staff to parents purchasing nonprescription medicines. One hundred and thirty-four surveys and thirty-four interviews were completed: most participants were 25-44 year-old women. The majority (85%) reported being questioned, most often by medicines counter assistants, to establish the safety and suitability of the medicine. Three key questions (whether the medicine had been used before, the age of the child, and concurrent medicines), however, were not always asked. Interviews revealed self-perceptions of 'expert' and 'novice' users, depending on experience with the medicine purchased. This seemed to affect their perception of their need for questioning and advice from pharmacy staff. Interactions in the pharmacy involving the purchase of medicines for young children are varied with regard to questioning and advice given. This study has found that key questions are not always asked before a medicine is sold, and advice about using the medicine was given in just over one-third of encounters. Parents/carers also identified a range of additional information they would like to have received with their medicine: there was, however, no clear pattern to the type of information they would like. Parents reflected on the

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

PubMed

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

2004-10-01

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. To identify what informal carers valued in the palliative support provided by GPs and district nurses by using carers' own descriptions of such support. Retrospective interviews. Primary care in Cambridgeshire. 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. 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 (> or =75 years), but this finding requires further investigation. 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.

Communication problems between dementia carers and general practitioners: effect on access to community support services.

PubMed

Bruce, David G; Paley, Glenys A; Underwood, Peter J; Roberts, David; Steed, Duncan

2002-08-19

To investigate the circumstances that led general practitioners to refer dementia sufferers and their carers to community support services. Qualitative study using semi-structured interviews, carried out between 1 September 1999 and 30 April 2000. 21 live-in carers of patients with dementia referred for the first time to a Western Australian metropolitan Aged Care Assessment Team, and 19 of their referring general practitioners. Most referrals occurred after the carers had been experiencing carer stress, and were precipitated by crisis situations. Carers failed to discuss their difficulties with the referring GP for a variety of reasons, including the belief that they should cope because it was their duty. The doctors found it difficult to know how the carers were coping or when to intervene, and some carers tended to resist their attempts to help. Time constraints were a significant problem for both groups. Attitudinal barriers in both carers of patients with dementia and GPs, combined with time constraints, often lead to inadequate assessment of carer problems. While it is important that strategies to improve communication between carers and GPs are developed, it would be sensible for GPs to assume that dementia carers are at risk of carer stress and should be encouraged to use community care services.

Consumers and Carers Versus Pharmacy Staff: Do Their Priorities for Australian Pharmacy Services Align?

PubMed

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

2015-10-01

Health professionals, including pharmacists, are encouraged to meet the needs of their consumers in an efficient and patient-centred manner. Yet, there is limited information as to what consumers with chronic conditions need from pharmacy as a healthcare destination or how well pharmacy staff understand these needs. The aim of this study was to identify service user priorities for ideal community pharmacy services for consumers with chronic conditions and their carers, and compare these priorities with what pharmacy staff think these groups want. The nominal group technique was undertaken with pharmacist, pharmacy support staff, consumer and carer groups in four Australian regions between December 2012 and April 2013. Participant ideas and priorities for ideal services or care were identified, and contextual insight was obtained by thematic analysis. Twenty-one nominal group sessions are accepted, including 15 consumer and carer, four pharmacist and two pharmacy support staff groups. Pharmacy staff views generally aligned with consumer priorities, such as access, affordability, patient-centred care and continuity and coordinated care, yet diverged with respect to consumer information or education on medication and services. Fundamentally, consumers and carers sought streamlined access to information and medication, in a coordinated, patient-centred approach. Alleviating financial burden was a key consumer priority, with a call for the continuation and extension of medication subsidies. Overall, pharmacy staff had a reasonable understanding of what consumers would prioritise, but further emphasis on the importance, delivery, or both, of consumer information is needed. Greater consideration is needed from policy makers regarding the financial barriers to accessing medication for consumers with chronic conditions.

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

PubMed

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

2017-04-01

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

Carers' assessment, skills and information sharing: theoretical framework and trial protocol for a randomised controlled trial evaluating the efficacy of a complex intervention for carers of inpatients with anorexia nervosa.

PubMed

Goddard, Elizabeth; Raenker, Simone; Macdonald, Pamela; Todd, Gillian; Beecham, Jennifer; Naumann, Ulrike; Bonin, Eva-Maria; Schmidt, Ulrike; Landau, Sabine; Treasure, Janet

2013-01-01

Experienced Carers Helping Others (ECHO) is a guided self-help intervention for carers of people with eating disorders to reduce distress and ameliorate interpersonal maintaining factors to improve patient outcomes. The aim of this paper is to describe the theoretical background and protocol of a randomised controlled trial that will establish whether ECHO has a significant beneficial effect for carers and the person they care for. Individuals with anorexia nervosa and carers will be recruited from eating disorder inpatient/day patient hospital services in the UK. Primary outcomes are time until relapse post-discharge (patient) and distress (carer) at 12 months post-discharge. Secondary outcomes are body mass index, eating disorder symptoms, psychosocial measures and health economic data for patients and carers. Carers will be randomised (stratified by site and illness severity) to receive ECHO (in addition to treatment as usual) or treatment as usual only. Potential difficulties in participant recruitment and delivery of the intervention are discussed. Copyright © 2012 John Wiley & Sons, Ltd and Eating Disorders Association.

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.…

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

PubMed

Williams, Lauren; Caldwell, Neil; Collins, Elizabeth

2016-09-01

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

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.

A practical comparison of two types of family intervention: an exploratory RCT of family day workshops and individual family work as a supplement to inpatient care for adults with anorexia nervosa.

PubMed

Whitney, Jenna; Murphy, Tara; Landau, Sabine; Gavan, Kay; Todd, Gill; Whitaker, Wendy; Treasure, Janet

2012-03-01

Little is known about the outcome of involving families in the treatment of adults with anorexia nervosa. Carers of people with anorexia nervosa experience significant levels of distress. This may contribute to unhelpful behaviours which maintain the illness. To evaluate the effectiveness and acceptability of family workshops with educational and skills-based components as compared to individual family work. An exploratory randomised controlled trial of two forms of family intervention was conducted for inpatients with anorexia nervosa (n = 48) and their family members on a specialised unit for adults. In both groups, there was an improvement in patients' BMI and a reduction in carers' distress. There were no differences between groups. Preliminary findings suggest that workshop-based intervention with two families might be as effective as an individually focused family intervention. This may offer a more cost-effective intervention for this treatment-resistant group. Copyright © 2011 John Wiley & Sons, Ltd and Eating Disorders Association.

Caring for patients on home enteral nutrition: Reported complications by home carers and perspectives of community nurses.

PubMed

Lim, Mei Ling; Yong, Bei Yi Paulynn; Mar, Mei Qi Maggie; Ang, Shin Yuh; Chan, Mei Mei; Lam, Madeleine; Chong, Ngian Choo Janet; Lopez, Violeta

2018-07-01

To explore the experiences of community nurses and home carers, in caring for patients on home enteral nutrition. The number of patients on home enteral nutrition is on the increase due to advancement in technology and shift in focus of providing care from acute to community care settings. A mixed-method approach was adopted. (i) A face-to-face survey design was used to elicit experience of carers of patients on home enteral nutrition. (ii) Focus group interviews were conducted with community nurses. Ninety-nine carers (n = 99) were recruited. Patient's mean age that they cared for was aged 77.7 years (SD = 11.2), and they had been on enteral feeding for a mean of 29 months (SD = 23.0). Most were bed-bound (90%) and required full assistance with their feeding (99%). Most were not on follow-up with dietitians (91%) and dentists (96%). The three most common reported gastrointestinal complications were constipation (31%), abdominal distension (28%) and vomiting (22%). Twenty community nurses (n = 20) were recruited for the focus group interviews. Four main themes emerged from the analysis: (i) challenge of accessing allied health services in the community; (ii) shorter length of stay in the acute care setting led to challenges in carers' learning and adaptation; (iii) transition gaps between hospital and home care services; and (iv) managing expectations of family. To facilitate a better transition of care for patients, adequate training for carers, standardising clinical practice in managing patients with home enteral nutrition and improving communication between home care services and the acute care hospitals are needed. This study highlighted the challenges faced by community home care nurses and carers. Results of this study would help to inform future policies and practice changes that would improve the quality of care received by patients on home enteral nutrition. © 2018 John Wiley & Sons Ltd.

Patients' and carers' perspectives of palliative care in general practice: A systematic review with narrative synthesis.

PubMed

Green, Emilie; Knight, Selena; Gott, Merryn; Barclay, Stephen; White, Patrick

2018-04-01

General practitioners have overall responsibility for community care, including towards end of life. Current policy places generalists at the centre of palliative care provision. However, little is known about how patients and carers understand the general practitioner's role. To explore patient and carer perspectives of (1) the role of the general practitioner in providing palliative care to adult patients and (2) the facilitators and barriers to the general practitioner's capacity to fulfil this perceived role. Systematic literature review and narrative synthesis. Seven electronic databases (MEDLINE, Embase, PsycINFO, BNI, CINAHL, Cochrane and HMIC) were searched from inception to May 2017. Two reviewers independently screened papers at title, abstract and full-text stages. Grey literature, guideline, hand searches of five journals and reference list/citation searches of included papers were undertaken. Data were extracted, tabulated and synthesised using narrative, thematic analysis. A total of 25 studies were included: 14 employed qualitative methods, 8 quantitative survey methods and 3 mixed-methods. Five key themes were identified: continuity of care, communication between primary and secondary care, contact and accessibility, communication between general practitioner and patient, and knowledge and competence. Although the terminology and context of general practice vary internationally, themes relating to the perceived role of general practitioners were consistent. General practitioners are considered well placed to provide palliative care due to their breadth of clinical responsibility, ongoing relationships with patients and families, and duty to visit patients at home and coordinate healthcare resources. These factors, valued by service users, should influence future practice and policy development.

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

PubMed

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

2016-10-01

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

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

PubMed

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

2017-08-01

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

Attachment Style of Foster Carers and Caregiving Role Performance

ERIC Educational Resources Information Center

Caltabiano, Marie L.; Thorpe, Rosamund

2007-01-01

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

Qualitative process evaluation of a problem-solving guided self-help manual for family carers of young people with first-episode psychosis

PubMed Central

2014-01-01

Background Caring for a young person experiencing first-episode psychosis is challenging and can affect carers’ well-being adversely. While some face-to-face approaches have achieved promising outcomes, they are costly and resource-intensive to provide, restricting their reach and penetration. Guided self-help in book-form (or bibliotherapy) is an alternative but untested approach in these circumstances. In this study, we aimed to evaluate carers’ beliefs about the usefulness of problem-solving guided self-help manual for primary carers of young people with first-episode psychosis. Methods A qualitative process evaluation nested in a randomised controlled trial, conducted across two early intervention psychosis services in Melbourne, Australia. 124 carers were randomised to problem-solving guided self-help intervention or treatment as usual. We also undertook a qualitative process evaluation, using individual interviews, with a random sample of 24 of the intervention group. A thematic analysis of the qualitative data was undertaken, which is the subject of this paper. Interviews were conducted between January 2009 and September 2010. Results Three themes were abstracted from the data, reflecting carers’ beliefs about the usefulness of the manual: promoting carers’ well-being, increasing carers’ understanding of and support for the young person with first-episode psychosis, and accessibility and delivery modes of the programme. Conclusion This process evaluation highlights that guided self-help is useful in informing and supporting carers of affected young people. While there is scope for broadening the delivery modes, the approach is easy to use and accessible, and can be used as a cost-effective adjunct to standard support provided to carers, by community mental health nurses and other clinicians. Trial registration ACTRN12609000064202 PMID:24906392

Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool.

PubMed

Aoun, Samar M; Deas, Kathleen; Kristjanson, Linda J; Kissane, David W

2017-02-01

Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers. The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6-8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire. A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as "knowing what to expect in the future," "knowing who to contact if concerned," and "equipment to help care." The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family. The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people

Missed opportunities for impact in patient and carer involvement: a mixed methods case study of research priority setting.

PubMed

Snow, R; Crocker, J C; Crowe, S

2015-01-01

(including patients, carers, healthcare professionals and voluntary organisations) were invited to submit suggested research questions about the treatment of type 1 diabetes, via a national online and paper survey. The partnership followed formal protocols that defined a researchable question. This meant that many respondents' suggested research questions were rejected at the start of the process. We analysed survey submissions to find out which groups of respondents were most likely to have their suggestions rejected and what these suggestions were about. Results Five hundred eighty-three respondents submitted 1143 suggested research questions, of which 249 (21.8 %) were rejected at the first stage. Respondents with lived experience of this long-term condition (patients and carers) were more likely than those without lived experience to submit a research question that would be rejected (35.6 vs. 16.5 %; p  < 0.0005). Among the rejected questions submitted by patients and carers, there were several key themes: questions about cure, cause and prevention, understanding the disease, healthcare policy and economics. Conclusions In this case study, early decisions about what constituted a researchable question restricted patients' and carers' contributions to priority setting. When discussions about a project's remit take place before service users are involved, researchers risk distorting the potential impact of involvement. Impact assessments should consider not only the differences patients and carers make to research but also the differences they could have made in the absence of systemic barriers. We recommend that initiatives aimed at involving patients and carers in identifying research questions involve them as early as possible, including in decisions about how and why suggested research questions are selected or rejected.

Post-traumatic growth in stroke carers: a comparison of theories.

PubMed

Hallam, William; Morris, Reg

2014-09-01

This study examined variables associated with post-traumatic growth (PTG) in stroke carers and compared predictions of two models of PTG within this population: the model of Schaefer and Moos was compared to that of Tedeschi and Calhoun (1992, Personal coping: Theory, research, and application. Westport, CT: Praeger, 149; 1998, Posttraumatic growth: Positive changes in the aftermath of crisis. Mahwah, NJ: Lawrence Erlbaum, 99; 2004, Psychol. Inq., 15, 1, respectively). A cross-sectional survey design was employed. Carers of stroke survivors (N = 71) completed questionnaires measuring PTG, coping style, social support, survivor functioning, age, and carer quality of life. Correlation, multiple regression, and mediation analyses were used to test hypotheses. All carers completing the PTG measure (N = 70) reported growth, but average scores differed from cancer carers (Chambers et al., 2012, Eur. J. Cancer Care, 21, 213; Thombre et al., 2010, J. Psychosocial Oncol., 28, 173). PTG was positively correlated with deliberate and intrusive rumination, avoidance coping, social support, and quality of life. Regression analysis showed that factors identified by Tedeschi and Calhoun (deliberate rumination, intrusive rumination, social support, acceptance coping, survivor functioning) accounted for 49% of variance in PTG, whereas those identified by Schaefer and Moos (active coping, avoidance coping, social support, survivor functioning, and age) accounted for only 21%. Rumination, especially deliberate rumination, explained most variance in PTG and mediated the effect of social support on PTG. The findings add to the limited body of evidence suggesting that stroke carers experience growth. Deliberate rumination and social support are important in explaining growth, and the findings support the model proposed by Tedeschi and Calhoun over that of Schaefer and Moos. What is already known on this subject? Literature on caring for stroke survivors focuses on negative outcomes (Ilse

Comparison of the adaptive implementation and evaluation of the Meeting Centers Support Program for people with dementia and their family carers in Europe; study protocol of the MEETINGDEM project.

PubMed

Dröes, R M; Meiland, F J M; Evans, S; Brooker, D; Farina, E; Szcześniak, D; Van Mierlo, L D; Orrell, M; Rymaszewska, J; Chattat, R

2017-04-04

The MEETINGDEM study aims to implement and evaluate an innovative, inclusive, approach to supporting community dwelling people with mild to moderate dementia and their family carers, called the Meeting Centers Support Program (MCSP), in three countries in the European Union (EU): Italy, Poland and United Kingdom. Demonstrated benefits of this person-centered approach, developed in The Netherlands, include high user satisfaction, reduced behavioral and mood problems, delayed admission to residential care, lower levels of caregiving-related stress, higher carer competence, and improved collaboration between care and welfare organizations. The project will be carried out over a 36 month period. Project partners in the three countries will utilize, and adapt, strategies and tools developed in the Netherlands. In Phase One (month 1-18) activities will focus on establishing an initiative group of relevant organizations and user representatives in each country, exploring pathways to care and potential facilitators and barriers to implementing the program, and developing country specific implementation plans and materials. In Phase Two (month 19‑36) training will be provided to organizations and staff, after which the meeting centers will be established and evaluated for impact on behavior, mood and quality of life of people with dementia and carers, cost-effectiveness, changes in service use, user satisfaction and implementation process. An overall evaluation will draw together findings from the three countries to develop recommendations for successful implementation of MCSP across the EU. If the Meeting Centers approach can be widely implemented, this could lead to major improvements in dementia care across Europe and beyond. The trial was retrospectively registered in May 2016: trial number: NTR5936 .

Determining the predictors of change in quality of life self-ratings and carer-ratings for community-dwelling people with Alzheimer disease.

PubMed

Bosboom, Pascalle R; Alfonso, Helman; Almeida, Osvaldo P

2013-01-01

The aim of this study was to determine the factors that mediate changes in Health Related Quality of Life (HRQoL) ratings by community-dwelling people with Alzheimer disease (AD) and carers over a period of 18 months. We completed an 18-month longitudinal study of 80 community-dwelling older adults diagnosed with probable AD of mild or moderate severity (NINCDS-ADRD criteria) and their family carers. The primary outcome of interest was the 18-month change in HRQoL ratings as measured with the Quality of Life-AD (QoL-AD) (by carer and by self). Explanatory variables included demographics, lifestyle, cognition, awareness, psychopathology, burden-of-care, use of medication, and functionality in daily life. We found a significant decline (8.7%, P=0.003) in QoL-AD carer-ratings, but not in self-ratings. The final parsimonious model of predictors of changes in QoL-AD self-ratings explained 22.6% of the variance; only changes on Hospital Anxiety and Depression Scale Anxiety retained significance. The final model of predictors of changes in carer-ratings explained 55.0% of the variance: that is, changes on Informant Questionnaire on Cognitive Decline in the Elderly, changes on Hospital Anxiety and Depression Scale Depression, practicing hobbies at 18 months, and number of visit(s) or admission(s) to hospital. HRQoL self-ratings and carer-ratings of community-dwelling people with AD do not decline at same rate over 18 months and changes are associated with different factors. Interventions designed to optimize quality of life of people with AD should consider carefully whose HRQoL ratings they wish to change.

Rasch analysis of the carers quality of life questionnaire for parkinsonism.

PubMed

Pillas, Marios; Selai, Caroline; Schrag, Anette

2017-03-01

To assess the psychometric properties of the Carers Quality of Life Questionnaire for Parkinsonism using a Rasch modeling approach and determine the optimal cut-off score. We performed a Rasch analysis of the survey answers of 430 carers of patients with atypical parkinsonism. All of the scale items demonstrated acceptable goodness of fit to the Rasch model. The scale was unidimensional and no notable differential item functioning was detected in the items regarding age and disease type. Rating categories were functioning adequately in all scale items. The scale had high reliability (.95) and construct validity and a high degree of precision, distinguishing between 5 distinct groups of carers with different levels of quality of life. A cut-off score of 62 was found to have the optimal screening accuracy based on Hospital Anxiety and Depression Scale subscores. The results suggest that the Carers Quality of Life Questionnaire for Parkinsonism is a useful scale to assess carers' quality of life and allows analyses requiring interval scaling of variables. © 2016 International Parkinson and Movement Disorder Society. © 2016 International Parkinson and Movement Disorder Society.

Experiencing mental health diagnosis: a systematic review of service user, clinician, and carer perspectives across clinical settings.

PubMed

Perkins, Amorette; Ridler, Joseph; Browes, Daniel; Peryer, Guy; Notley, Caitlin; Hackmann, Corinna

2018-04-18

Receiving a mental health diagnosis can be pivotal for service users, and it has been described in both positive and negative terms. What influences service-user experience of the diagnostic process is unclear; consequently, clinicians report uncertainty regarding best practice. This Review aims to understand and inform diagnostic practice through a comprehensive synthesis of qualitative data on views and experiences from key stakeholders (service users, clinicians, carers, and family). We searched five databases and identified 78 papers for inclusion, originating from 13 countries and including 2228 participants. Eligible papers were assessed for quality, and data were coded and then developed into themes, which generated a model representing factors to consider for clinicians conveying, and individuals receiving, mental health diagnoses. Themes included disclosure, information provision, collaboration, timing, stigma, and functional value of diagnosis for recovery. Variations between different stakeholders and clinical contexts are explored. Findings support an individualised, collaborative, and holistic approach to mental health diagnosis. Copyright © 2018 Elsevier Ltd. All rights reserved.

America's Children and Their Families: Key Facts.

ERIC Educational Resources Information Center

Simons, Janet M.; Eng, Mary

For advocates, parents, educators, researchers, and speechmakers, this book brings together key facts and statistical data about the American family, now and in the near future. The first section provides an overview of population and demographic trends extending through the first decade of the 21st century. This overview is followed by sections…

Addressing the mental health needs of looked after children in foster care: the experiences of foster carers.

PubMed

York, W; Jones, J

2017-03-01

among the increasing population of looked after children, there continues to be poor uptake and utilization of Child and Adolescent Mental Health Services (CAMHS). Aim To elicit views of foster carers regarding the mental health needs of children and adolescents in their care and their experiences of accessing mental health services. Methods A grounded theory approach and semistructured interviews with ten foster carers. Results The experience of being a foster carer was the core category, with three major themes: (1) foster carers' psychological understanding of challenging behaviour; (2) barriers to accessing CAMHS; (3) the importance of support. Discussion A key finding of this research is that barriers to accessing CAMHS were not experienced at the point of referral, but once within the mental health system. The foster carers demonstrated a proactive approach to accessing services but expressed a need for more support structures related directly to the viability of the placement. Implications for practice Mental health nurses have a pivotal role in providing a more responsive and needs-led service for this population; professional support to foster carers to include facilitating peer support; and clinical interventions for the looked after children. © 2017 John Wiley & Sons Ltd.

The place for emotions in professional carers' thinking: reflections on two cases.

PubMed

Koren, E

2010-12-01

How do carers know what is right for their patient? What can they do further to relying on the two pillars of knowledge and ethics? Knowledge foregrounds rational decision-making based on scientific evidence. It allows cost-benefit rationalization and the choice of the best feasible objective. The steady advance of medical science drives responsible carers to keep their knowledge and skills up-to-date. Bioethics grants primary attention to the prevention of causing harm in general, to pursuant of patients' subjective wellbeing and to allow the latter enjoy their autonomy and to guarantee them the sense of justice. There are, however, cases where these values collide and any care decision violates one principle or another. How are carers expected to act then? This article concerns the choices made by carers, as presented and discussed in two cases. These cases deal with a clash between two principles: parenthood vs. fertility, religious rite vs. social affiliation. This class has generated an ethical dilemma. In each case carers try to justify their choices by expert knowledge and other ethical values, but later reflection reveals that the predominant element in 'solving' these dilemmas was "emotions." Professional training submits that: 'Set aside feelings in order to keep your thinking 'straight.' However, reality proves this simply infeasible. The more complex the medical-ethical situation, it is more likely that "emotions" take over. We have no choice as responsible carers but to allow our emotions the status of a factor of influence in their own right. Nowadays, a basic medical training for doctors and nurses offers an integrated body of knowledge and therapeutic skills. In addition, trainees are introduced to bioethics, supposedly sufficient to guide their future steps in their chosen profession. But how does this training in fact shape their future ethical conduct, if at all? How does it affect their ability to maintain ethical responsibility throughout

Development of an optimised key worker framework for people with dementia, their family and caring unit living in the community.

PubMed

Renehan, Emma; Goeman, Dianne; Koch, Susan

2017-07-20

In Australia, dementia is a national health priority. With the rising number of people living with dementia and shortage of formal and informal carers predicted in the near future, developing approaches to coordinating services in quality-focused ways is considered an urgent priority. Key worker support models are one approach that have been used to assist people living with dementia and their caring unit coordinate services and navigate service systems; however, there is limited literature outlining comprehensive frameworks for the implementation of community dementia key worker roles in practice. In this paper an optimised key worker framework for people with dementia, their family and caring unit living in the community is developed and presented. A number of processes were undertaken to inform the development of a co-designed optimised key worker framework: an expert working and reference group; a systematic review of the literature; and a qualitative evaluation of 14 dementia key worker models operating in Australia involving 14 interviews with organisation managers, 19 with key workers and 15 with people living with dementia and/or their caring unit. Data from the systematic review and evaluation of dementia key worker models were analysed by the researchers and the expert working and reference group using a constant comparative approach to define the essential components of the optimised framework. The developed framework consisted of four main components: overarching philosophies; organisational context; role definition; and key worker competencies. A number of more clearly defined sub-themes sat under each component. Reflected in the framework is the complexity of the dementia journey and the difficulty in trying to develop a 'one size fits all' approach. This co-designed study led to the development of an evidence based framework which outlines a comprehensive synthesis of components viewed as being essential to the implementation of a dementia key

Two-year Follow-up of a Pragmatic Randomised Controlled Trial Examining the Effect of Adding a Carer's Skill Training Intervention in Inpatients with Anorexia Nervosa.

PubMed

Magill, Nicholas; Rhind, Charlotte; Hibbs, Rebecca; Goddard, Elizabeth; Macdonald, Pamela; Arcelus, Jon; Morgan, John; Beecham, Jennifer; Schmidt, Ulrike; Landau, Sabine; Treasure, Janet

2016-03-01

Active family engagement improves outcomes from adolescent inpatient care, but the impact on adult anorexia nervosa is uncertain. The aim of this study was to describe the 2-year outcome following a pragmatic randomised controlled trial in which a skill training intervention (Experienced Caregivers Helping Others) for carers was added to inpatient care. Patient, caregiver and service outcomes were measured for 2 years following discharge from the index inpatient admission. There were small-sized/moderate-sized effects and consistent improvements in all outcomes from both patients and carers in the Experienced Caregivers Helping Others group over 2 years. The marked change in body mass index and carers' time caregiving following inpatient care was sustained. Approximately 20% of cases had further periods of inpatient care. In this predominately adult anorexia nervosa sample, enabling carers to provide active support and management skills may improve the benefits in all symptom domains that gradually follow from a period of inpatient care. Copyright © 2015 John Wiley & Sons, Ltd and Eating Disorders Association.

Web-Based Intervention for Family Carers of Persons with Dementia and Multiple Chronic Conditions (My Tools 4 Care): Pragmatic Randomized Controlled Trial.

PubMed

Duggleby, Wendy; Ploeg, Jenny; McAiney, Carrie; Peacock, Shelley; Fisher, Kathryn; Ghosh, Sunita; Markle-Reid, Maureen; Swindle, Jennifer; Williams, Allison; Triscott, Jean Ac; Forbes, Dorothy; Jovel Ruiz, Kathya

2018-06-29

My Tools 4 Care (MT4C) is a Web-based intervention that was developed based on the transitions theory. It is an interactive, self-administered, and portable toolkit containing six main sections intended to support carers of community-living persons with Alzheimer's disease and related dementia and multiple chronic conditions through their transition experiences. The objective of our study was to evaluate the effectiveness of MT4C with respect to increasing hope, self-efficacy, and health-related quality of life in carers of community-living older persons with Alzheimer's disease and related dementia and multiple chronic conditions. A multisite, pragmatic, mixed methods, longitudinal, repeated-measures, randomized controlled trial was conducted between June 2015 and April 2017. Eligible participants were randomized into either treatment (MT4C) or educational control groups. Following baseline measures, carers in the treatment group received 3 months of password-protected access to MT4C. Trained research assistants collected data from participants via phone on hope (Herth Hope Index [HHI]), self-efficacy (General Self-Efficacy Scale), and health-related quality of life (Short Form-12 item [version 2] health survey; SF-12v2) at baseline, 1, 3, and 6 months. The use and cost of health and social services (Health and Social Services Utilization Inventory) among participants were measured at baseline, 3, and 6 months. Analysis of covariance was used to identify group differences at 3 months, and generalized estimating equations were used to identify group differences over time. A total of 199 carers participated in this study, with 101 participants in the treatment group and 98 in the educational control group. Of all, 23% (45/199) participants withdrew during the study for various reasons, including institutionalization or death of the person with dementia and lack of time from the carer. In the treatment group, 73% (74/101) carers used MT4C at least once over the 3

Mapping support policies for informal carers across the European Union.

PubMed

Courtin, Emilie; Jemiai, Nadia; Mossialos, Elias

2014-10-01

At a time when health and social care services in European countries are under pressure to contain or cut costs, informal carers are relied upon as the main providers of long-term care. However, still little is known about the availability of direct and indirect support for informal carers across the European Union. Primary data collection in all EU member states was supplemented with an extensive review of the available literature. Various forms and levels of support have been implemented across Europe to facilitate the role of informal caregivers. Financial support is the most common type of support provided, followed by respite care and training. Most countries do not have a process in place to systematically identify informal carers and to assess their needs. Policies are often at an early stage of development and the breadth of support varies significantly across the EU. Policy developments are uneven across the member states, with some countries having mechanisms in place to assess the needs and support informal carers while others are only starting to take an interest in developing support services. Given the unprecedented challenges posed by population ageing, further research and better data are needed to capture and monitor information on informal carers, to help design adequate support policies and eventually to evaluate their impact across the EU. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

Survival, Signaling, and Security: Foster Carers' and Residential Carers' Accounts of Self-Harming Practices Among Children and Young People in Care.

PubMed

Evans, Rhiannon E

2018-05-01

Research on clinicians' interpretations of self-harming practices has shown that they can often be negative. To date there has been limited consideration of other professionals' narratives, notably those working in social care. This article presents focus group and interview data generated with foster carers ( n = 15) and residential carers ( n = 15) to explore the symbolic meanings ascribed to self-harm among the children and young people they care for. Three repertoires of interpretation are presented: survival, which conceives self-harm as a mechanism for redefining the identity of "looked-after"; signaling, which understands self-harm as a communicative tool for the expression of emotion; and security, which sees self-harming practices as testing the authenticity and safety of the caring relationship. Through their focus on sociocultural narratives, carers position themselves as experts on self-harm due to their intimacy with young people's social worlds. This construction potentially creates distance from health professionals, which is problematic given the current privileging of interprofessional working.

Sharing the load: parents and carers talk to consumer consultants at a child and youth mental health inpatient unit.

PubMed

Geraghty, Kerry; McCann, Karen; King, Robert; Eichmann, Kathryn

2011-08-01

Caring for a child or adolescent affected by mental illness has been identified as imposing stresses and burdens in excess of those usually associated with child rearing. Peer support has been identified as one means by which these stresses and burdens can be reduced. This study investigated the work of a peer support service provided by Mater Child and Youth Mental Health Service in Brisbane, Australia. The study took the form of a content analysis of records of consultations between consumer consultants and 50 families/carers of children admitted into the acute inpatient unit during the period May 2006-April 2008. The content analysis identified four key themes or domains: experience of service provision, emotions and feelings associated with the admission, need for information, and coping with challenges. The findings from the study affirm the role of consumer consultants in child and adolescent inpatient services. Some families value a peer perspective and the opportunity to seek advice and information around a wide variety of topics from people not directly involved in the treatment of their child. © 2011 Mater Health Services. International Journal of Mental Health Nursing © 2011 Australian College of Mental Health Nurses Inc.

A Dichotomous Key for the Identification of Common British Wild Flower Families

ERIC Educational Resources Information Center

Wood, Piers

2004-01-01

This article argues the need for, and provides, a dichotomous single access key for the identification of common British wild flower families. A minimum of technical vocabulary is used while at the same time retaining most of the recent botanical names of families. The key provides a user-friendly opportunity for school pupils to become familiar…

Few opportunities to influence decisions regarding the care and treatment of an older hospitalized family member: a qualitative study among family members.

PubMed

Nyborg, Ingrid; Danbolt, Lars Johan; Kirkevold, Marit

2017-08-31

The drive towards patient involvement in health services has been increasingly promoted. The World Health Organisation emphasizes the family's perspective in comprehensive care. Internationally there is an increased emphasis on what patients and their family tell about the hospital experiences. However, current literature does not adequately address the question of participation experiences among relatives of older hospitalized family members. There is a paucity of research with a generational perspective on relatives' opportunities to exert influence. The aim of the study was to explore relatives' experiences of opportunities to participate in decisions about the care and treatment of older hospitalized family members and whether there are different experiences of influence to the relatives' age. This was an explorative study applying individual qualitative interviews. The interviews were analysed following hermeneutic methodological principles. Two Norwegian geriatric wards participated: one at a university hospital and one at a local hospital. Twelve participants, six women and six men, were purposively selected. The relatives were aged from 36 to 88 (mean age 62) and were spouses, children and/or children-in-law of patients. The relatives' experienced opportunities to exert influence were distributed along a continuum ranging from older relatives being reactive waiting for an initiative from health professionals, to younger adults being proactive securing influence. Older "invisible" carers appeared to go unnoticed by the health professionals, establishing few opportunities to influence decisions. The middle-aged relatives also experienced limited influence, but participated when the hospital needed it. However, limited participation seemed to have less impact on their lives than in the older relatives. Middle-aged relatives and younger adults identified strategies in which visibility was the key to increasing the odds of gaining participation. The exceptional

Impact of housing improvement and the socio-physical environment on the mental health of children's carers: a cohort study in Australian Aboriginal communities.

PubMed

Bailie, Ross S; Stevens, Matthew; McDonald, Elizabeth L

2014-05-19

The mental health of carers is an important proximate factor in the causal web linking housing conditions to child health, as well as being important in its own right. Improved understanding of the nature of the relationships between housing conditions, carer mental health and child health outcomes is therefore important for informing the development of housing programs. This paper examines the relationship between the mental health of the carers of young children, housing conditions, and other key factors in the socio-physical environment. This analysis is part of a broader prospective cohort study of children living in Aboriginal communities in the Northern Territory (NT) of Australia at the time of major new community housing programs. Carer's mental health was assessed using two validated scales: the Affect Balance scale and the Brief Screen for Depression. The quality of housing infrastructure was assessed through detailed surveys. Secondary explanatory variables included a range of socio-environmental factors, including validated measures of stressful life events. Hierarchical regression modelling was used to assess associations between outcome and explanatory variables at baseline, and associations between change in housing conditions and change in outcomes between baseline and follow-up. There was no clear or consistent evidence of a causal relationship between the functional state of household infrastructure and the mental health of carers of young children. The strongest and most consistent associations with carer mental health were the measures of negative life events, with a dose-response relationship, and adjusted odds ratio of over 6 for carers in the highest stress exposure category at baseline, and consistent associations in the follow up analysis. The findings highlight the need for housing programs to be supported by social, behavioral and community-wide environmental programs if potential health gains are to be more fully realized, and for

Public, patient and carers' views on palliative and end-of-life care in India.

PubMed

Ramasamy Venkatasalu, M; Sirala Jagadeesh, N; Elavally, S; Pappas, Y; Mhlanga, F; Pallipalayam Varatharajan, R

2018-06-01

To systematically review the existing evidence on the Indian public, patient and carers' perspectives on palliative and end-of-life care. With a growing population of terminally ill people across the world, there is also an increasing awareness among international health policy makers of the need to improve the quality of life for terminally ill patients. Understanding service users' (patients, family and public) perspectives is crucial in developing and sustaining successful community-centred palliative nursing policies and service models especially in countries like India with diverse population. An integrative review was performed on five databases, using hand searches of key journals and reference citation tracking for empirical studies published in English from 1990 to 2015. A thematic analysis framework was used to analyse and identify key themes. Analysis of the six eligible studies revealed five themes. Themes describe how social, economic, cultural, religious, spiritual and traditional factors influenced the palliative and end-of-life care perspectives and experiences among Indians. They also illustrated preferences relating to place of care, as well as benefits and challenges of family caregiving during the last days of life. Although we found minimal evidence on user perspectives, nurses need to aware of those unique components of context-specific palliative and end-of-life care practices in India - socioeconomic, cultural and religious factors - on their nursing encounters. Nurses need to advocate same in policy development to enable accessibility and utility of palliative and end-of-life care services, which are scant in India. Nurses can be central in gathering the contextual evidence that advocate users' perspectives to inform further studies and national palliative care policies in India. Emerging policies in nursing education need to focus on integrating family-centred palliative and end-of-life care within curricula, whereas nursing practice may

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

PubMed Central

Kuo, Caroline; Operario, Don; Cluver, Lucie

2011-01-01

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

Young Carers' Educational Experiences and Support: A Roadmap for the Development of School Policies to Foster Their Academic Success

ERIC Educational Resources Information Center

Lakman, Yana; Chalmers, Heather; Sexton, Cayleigh

2017-01-01

Young Carers (YCs) provide care for ill, disabled, or addicted family member(s) and may experience risk to their educational success. This study examined 145 YCs in Southern Ontario, aged 8-18, using surveys and found that many YCs considered school important and were doing well academically whereas some YCs' education was negatively impacted.…

Mental Wellbeing of Family Members of Autistic Adults

ERIC Educational Resources Information Center

Herrema, Renske; Garland, Deborah; Osborne, Malcolm; Freeston, Mark; Honey, Emma; Rodgers, Jacqui

2017-01-01

Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic…

The Role of Mobile Phones in Family Communication

ERIC Educational Resources Information Center

Devitt, Kerry; Roker, Debi

2009-01-01

Whilst there is a wealth of research into family communication and family relationships, there is little information about whether (and if so how) mobile phones have impacted on these processes. The authors' study involved individual semi-structured interviews with 60 families, including parents/carers and young people aged 11-17, to investigate…

‘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

The Views of Mental Health Manager Towards the Use of a Family Work Model for Psychosis in Guangzhou, China.

PubMed

Dixon, Jeremy; Lei, Jie; Huang, Wanyi; Sin, Jacqueline; Smith, Gina

2018-02-21

Family Interventions in Psychosis (FIP) have been promoted internationally but have been criticised for being based on western cultural models. This paper reports on a focus group study with 10 Integrated Mental Health Service Managers in Guangzhou, China using thematic analysis. Managers believed FIP might benefit families but identified potential difficulties due to (a) families avoiding services due to the 'shame' of mental illness (b) unrealistic expectations of services amongst families (c) deferral to 'key decision-makers' within families when discussing family issues with workers. The findings indicate that FIP work should focus on interaction between carers in the first instance with service users being introduced into sessions at a later date and that more attention needs to be given by the research community to how FIP may be adapted to cultural norms within China.

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.

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.

Cultural differences are reflected in variables associated with carer burden in FTD: a comparison study between India and Australia

PubMed Central

Mekala, Shailaja; Alladi, Suvarna; Chandrasekar, Kammammettu; Fathima, Safiya; M.O.'Connor, Claire; McKinnon, Colleen; Hornberger, Michael; Piguet, Olivier; Hodges, John R.; Mioshi, Eneida

2013-01-01

There is great need to understand variables behind carer burden, especially in FTD. Carer burden is a complex construct, and its factors are likely to vary depending on the type of dementia, carer characteristics and cultural background. OBJECTIVE The present study aimed to compare profiles and severity of carer burden, depression, anxiety and stress in carers of FTD patients in India in comparison to Australia; to investigate which carer variables are associated with carer burden in each country. METHODS Data of 138 participants (69 dyads of carers-patients) from India and Australia (India, n=31; Australia, n=38). Carer burden was assessed with the short Zarit Burden Inventory; carer depression, anxiety and stress were measured with the Depression, Anxiety and Stress-21. Dementia severity was determined with the Frontotemporal Dementia Rating Scale (FTD-FRS), and a range of demographic variables regarding the carer and patient were also obtained. RESULTS Overall, levels of carer burden were not significantly different across India and Australia, despite more hours delivering care and higher dementia severity in India. Variables associated with burden, however, differed between countries, with carer depression, anxiety and stress strongly associated with burden in India. By contrast, depression, stress, and dementia severity were associated with burden in Australia. CONCLUSION This study demonstrated that variables associated with carer burden in FTD differ between cultures. Consequently, cultural considerations should be taken into account when planning for interventions to reduce burden. This study suggests that addressing carers' skills and coping mechanisms are likely to result in more efficacious outcomes than targeting patient symptoms alone. PMID:29213826

Design, Delivery and Evaluation of Teaching by Service Users and Carers

ERIC Educational Resources Information Center

Benbow, Susan Mary; Taylor, Louise; Mustafa, Nageen; Morgan, Kathleen

2011-01-01

Education influences individual health and social care professionals and the systems in which they work. We describe a postgraduate educational program that did this through involving service users and carers in designing and facilitating teaching programs. A module of teaching was designed and delivered in partnership with users and carers from…

Family-friendliness in business as a key issue for the future.

PubMed

Stutzer, Erich

2012-01-01

These days family-friendliness is a key issue for the future of businesses. Investments in a family conscious personnel policy are considered as forward-looking decisions in companies. This happens against the background of a sustainable personnel policy in times of a decrease in the number of employable persons, an increasing shortage of skilled workers and an ageing workforce. Family-friendly working conditions are becoming a key factor in the competition for staff. When choosing an employer, family-friendliness has become a crucial topic. Employment participation and skills of women, especially of mothers, have greatly increased. To facilitate the realisation of their wish to return to paid employment, however, measures to reconcile work and family are required. Family-conscious measures have been proven to lead to higher employee productivity. Job satisfaction and motivation of employees and accumulation of human capital increase, absenteeism declines, the return of investment rises. Fields of activity for family-friendly measures in companies range from working arrangements, parental leave and re-entry programmes and various child care offers to services for families. In connection with the demographic development the demand for a better reconciliation of work and elder care should in future become ever more important, just as the upkeep of the occupational skills and working capacity of an ageing workforce. Family-friendliness has to become an integral part of corporate culture.

Caring for the carer: a systematic review of pure technology-based cognitive behavioral therapy (TB-CBT) interventions for dementia carers.

PubMed

Scott, Jennifer L; Dawkins, Sarah; Quinn, Michael G; Sanderson, Kristy; Elliott, Kate-Ellen J; Stirling, Christine; Schüz, Ben; Robinson, Andrew

2016-08-01

Face-to-face delivery of CBT is not always optimal or practical for informal dementia carers (DCs). Technology-based formats of CBT delivery (TB-CBT) have been developed with the aim to improve client engagement and accessibility, and lower delivery costs, and offers potential benefits for DCs. However, research of TB-CBT for DCs has maintained heavy reliance on therapist involvement. The efficacy of pure TB-CBT interventions for DCs is not currently established Methods: A systematic review of trials of pure TB-CBT intervention for DCs from 1995 was conducted. PsycINFO, Cochrane Reviews, Scopus and MedLine databases were searched using key terms related to CBT, carers and dementia. Four hundred and forty two articles were identified, and inclusion/exclusion criteria were applied; studies were only retained if quantitative data was available, and there was no active therapist contact. Four articles were retained; two randomized and two waitlist control trials. Methodological and reporting quality was assessed. Meta-analyses were conducted for the outcome measures of caregiver depression. Meta-analysis revealed small significant post-intervention effects of pure TB-CBT interventions for depression; equivalent to face-to-face interventions. However, there is no evidence regarding long-term efficacy of pure TB-CBT for DCs. The systematic review further identified critical methodological and reporting shortcomings pertaining to these trials Conclusions: Pure TB-CBT interventions may offer a convenient, economical method for delivering psychological interventions to DCs. Future research needs to investigate their long-term efficacy, and consider potential moderating and mediating factors underpinning the mechanisms of effect of these programs. This will help to provide more targeted interventions to this underserviced population.

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

PubMed

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

2018-03-01

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

Self-management support at the end of life: Patients', carers' and professionals' perspectives on managing medicines.

PubMed

Campling, N; Richardson, A; Mulvey, M; Bennett, M; Johnston, B; Latter, S

2017-11-01

Pain is a frequently reported symptom by patients approaching the end of life and well-established that patients and carers hold fears relating to opioids, and experience side effects related to their use. The management of medicines is intrinsic to achieving effective pain relief. The concept of self-management support whilst well characterised in the context of chronic illness has not been elaborated with respect to end of life care. To identify patient, carer and professional views on the concept of self-management support at end of life, specifically in relation to analgesia and related medicines (for side-effect management) in order to describe, characterise and explain self-management support in this context. Qualitative design, data collection methods involved focus groups and interviews. Topics included the meaning of self-management support in this context, roles and behaviours adopted to manage pain-related medicines, and factors that influence these. A largely deductive approach was used, involving verification and validation of key frameworks from the literature, but with capacity for new findings to emerge. Participants were drawn from two different localities in England, one North, the other South. Interviews with patients and carers took place in their own homes and focus groups with healthcare professionals were held at local hospices. 38 individuals participated. 15 patients, in the last year of life, and 4 carers under the care of community-based specialist palliative care services and 19 specialist palliative care health professionals (predominantly community palliative care nurses). The concept of self-management support had salience for patients, carers and specialist nurses alongside some unique features, specific to the end of life context. Specifically self-management was identified as an ever-changing process enacted along a continuum of behaviours fluctuating from full to no engagement. Disease progression, frequent changes in symptoms and

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…

The burden of care of schizophrenia in Malay families.

PubMed

Salleh, M R

1994-03-01

Deinstitutionalization has shifted much of the burden of care of chronic schizophrenia from mental institutions to the family. The aim of this study is to asses the prevalence of mental disorders among 210 primary carers of Malay schizophrenic patients, explored the burden and hardship experienced by them. This is a two-stage psychiatric screening procedure. All the cases suspected from initial screening with WHO Self-Reporting Questionnaires (SRQ-20) were called for clinical interview. Patients' behavioural problems and the burden of relatives were assessed by the Social Behaviour Schedule and the Interview Schedule respectively. It was found that about 23% of the carers developed neurotic disorders resulting from the stress; nearly half of them had neurotic depression. Despite their burden, they do not complaint about it. Neurotic carers compared with non-neurotic carers had significantly more subjective burden and distress related to the product of active psychosis. The carers were generally able to tolerate the negative symptoms of schizophrenia. The number of problem behaviours and previous admissions were significantly correlated with the severity of burden.

The KICA Carer: informant information to enhance the Kimberley Indigenous Cognitive Assessment.

PubMed

Smith, K; Flicker, L; Atkinson, D; Dwyer, A; Lautenschlager, N T; Thomas, J; Almeida, O P; LoGiudice, D

2016-01-01

A quality dementia-screening tool is required for older remote Aboriginal Australians who have high rates of dementia and limited access to appropriate medical equipment and clinicians. The Kimberley Indigenous Cognitive Assessment (KICA Cog) is a valid cognitive test for dementia in Aboriginal and Torres Strait Islander peoples. The KICA cognitive informant questionnaire (KICA Carer) had yet to be analyzed to determine validity alone or in combination with the KICA Cog. The KICA Carer was completed by nominated informants of 349 remote-living Aboriginal Australians in the Kimberley region, Western Australia. Validity was assessed by comparing KICA Carer with Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) and International Classification of Diseases (ICD-10) consensus diagnoses based on a blinded specialist review. KICA Carer and KICA Cog were then compared to determine joint validity. A KICA Carer score of ≥3/16 gave optimum sensitivity (76.2%) and specificity (81.4%), area under curve (AUC) 0.89 (95% CI = 0.85, 0.94) with positive predictive value (PPV) of 35.8%, and negative predictive value (NPV) of 96.2%. A KICA Cog score of ≤33/39 gave a sensitivity of 92.9% and specificity of 89.9%, AUC 0.96 (95% CI = 0.94, 0.98), with PPV of 55.6% and NPV of 98.9%. Cut-off scores of KICA Cog ≤ 33/39 and KICA Carer ≥ 2/16 in series indicate possible dementia, with sensitivity of 90.5% and specificity of 93.5%. In this setting, PPV was 66.5% and NPV was 98.6%. The KICA Carer is an important tool to accurately screen dementia in remote Aboriginal Australians when the KICA Cog is unable to be used for a patient. It is readily accepted by caregivers. • For the best practice in the cognitive assessment of an Aboriginal Australian aged over 45 years, KICA Cog should be utilized. • In cases where Aboriginal patients are not assessed directly, KICA Carer should be conducted with an informant. A cut-off score of ≥3/16 should be used (these tools can be

Carers' experiences of home enteral feeding: A survey exploring medicines administration challenges and strategies.

PubMed

Alsaeed, D; Furniss, D; Blandford, A; Smith, F; Orlu, M

2018-06-01

The use of enteral tube feeding at home is becoming more widespread, with patients ranging in age and diseases. Dysphagia and swallowing difficulties can compromise nutritional intake and the administration of oral medications, affecting therapeutic outcomes negatively. Carers' experiences of medicines administration and medicines optimization have not been explored fully. The objectives of this study were to identify issues carers experience in medicines administration; the strategies they have developed to cope; and suggestions to improve the medicines administration process. An online survey was promoted nationally; 42 carers completed it. Descriptive statistical analysis was applied, as well as thematic analysis of open-ended responses. Results were compared against the 4 principles of medicines optimization. 93% of respondents administered medications with enteral feeding tubes, but only 62% had received advice from healthcare professionals and only 8% had received written information on how to do so. Responses identified 5 medicines administration issues experienced by carers; 4 strategies they developed to cope; and 3 main areas of suggestions to improve medicines administration via enteral feeding at home. The 4 principles of medicines optimization have not previously been applied to enteral feeding. We present a novel account of carers' experiences, for example coping with ill-suited formulations and a lack of training and support, which should inform better practice (Principle 1). Carers sometimes experience suboptimal choice of medicines (Principle 2). Carers' practices are not always well-informed and may affect therapeutic outcomes and safety (Principle 3). There is scope for improvement in carer training, education and support to better support medicines optimization (Principle 4). © 2018 The Authors. Journal of Clinical Pharmacy and Therapeutics Published by John Wiley & Sons Ltd.

Burden of illness in systemic lupus erythematosus: results from a UK patient and carer online survey.

PubMed

Kent, T; Davidson, A; Newman, D; Buck, G; D'Cruz, D

2017-09-01

Objective The objective of this study was to assess the impact of systemic lupus erythematosus (SLE) on patients and carers. Methods Adults with SLE and carers of SLE patients completed a UK-specific online survey covering many aspects of the disease. Surveys were developed in collaboration with an NHS lupus unit and a lupus patient organization. Results A total of 121 patients and 31 carers completed the surveys. Of the 70% of patients initially misdiagnosed with another condition, 59% received treatment for the misdiagnosis. Fatigue was the most debilitating symptom, experienced daily by 79% of patients. The proportion of patients not reporting flares to healthcare providers varied with flare severity: mild flares (43%), moderate flares (15%) and severe flares (5%). Most patients (89%) reported reduced ability to socialize, and 76% had changed employment; of these, 52% stopped working completely. Over one-half (52%) of carers in paid employment missed time from work, and 55% of carers reported a worsened financial status. Most carers (87%) experienced interference with social activities. Conclusion SLE is commonly misdiagnosed and has a considerable impact on the physical, social and financial status of patients and carers. Increased awareness of the disease among healthcare providers and employers of patients and their carers is needed.

The experiences of patients and carers living.

PubMed

Leeder, Stephen R; Jowsey, Tanisha; McNab, Justin W

2018-01-01

Non-communicable diseases (NCDs) are increasing in prevalence and straining health systems globally. This creates a so-called 'burden of disease', which can be traced in terms of fiscal health system matters and in terms of quality of life and lived experiences of people with NCDs. The United Nations has called for a global agenda to manage NCDs and reduce their burden. The purpose of this article is to summarise key findings from the Serious and Continuing Illness Policy and Practice Study concerning patients’ and carers’ experiences of multimorbid NCDs in Australia. We focus on the relevance of findings for policy and general practitioners in Australia. We suggest that a complex multimorbidity policy is needed to contextualise and guide single-illness NCD policies. Our research suggests that specialist NCD nurses and allied health professionals could have important roles in improving care coordination between general practices and community health centres.

"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…

A Pilot, Multicentre Pragmatic Randomised Trial to Explore the Impact of Carer Skills Training on Carer and Patient Behaviours: Testing the Cognitive Interpersonal Model in Adolescent Anorexia Nervosa.

PubMed

Hodsoll, John; Rhind, Charlotte; Micali, Nadia; Hibbs, Rebecca; Goddard, Elizabeth; Nazar, Bruno Palazzo; Schmidt, Ulrike; Gowers, Simon; Macdonald, Pamela; Todd, Gillian; Landau, Sabine; Treasure, Janet

2017-11-01

The aim of the study is to establish the acceptability, feasibility and approximate size of the effect of adding a carer intervention [Experienced Caregivers Helping Others (ECHO)] to treatment as usual (TAU) for adolescents with anorexia nervosa. The study is a pilot randomised trial comparing TAU (n = 50) alone or TAU plus ECHO with (n = 50) or without (n = 49) telephone guidance. Effect sizes (ESs) were regression coefficients standardised by baseline standard deviations of measure. Although engagement with ECHO was poor (only 36% of carers in the ECHO group read over 50% of the book), there were markers of intervention fidelity, in that caregivers in the ECHO group showed a moderate increase in carer skills (ES = 0.4) at 12 months and a reduction in accommodating and enabling behaviour at 6 months (ES = 0.17). In terms of efficacy, in the ECHO group, carers spent less time care giving (ES = 0.40, p = 0.04) at 1 year, and patients had a minor advantage in body mass index (ES = 0.17), fewer admissions, decreased peer problems (ES = -0.36) and more pro-social behaviours (ES = 0.53). The addition of telephone guidance to ECHO produced little additional benefit. The provision of self-management materials for carers to standard treatment for adolescent anorexia nervosa shows benefits for both carers and patients. This could be integrated as a form of early intervention in primary care. Copyright © 2017 John Wiley & Sons, Ltd and Eating Disorders Association. Copyright © 2017 John Wiley & Sons, Ltd and Eating Disorders Association.

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.

Caring for a dying spouse at the end of life: 'It's one of the things you volunteer for when you get married': a qualitative study of the oldest carers' experiences.

PubMed

Turner, Mary; King, Claire; Milligan, Christine; Thomas, Carol; Brearley, Sarah G; Seamark, David; Wang, Xu; Blake, Susan; Payne, Sheila

2016-05-01

older people aged 80 and over are increasingly providing end-of-life care to spouses at home and often do so for long periods of time, while also trying to manage their own illnesses and disabilities. Little of the research on older spousal carers has focussed on the oldest carers; hence, the needs of this particular population are not fully known. to explore the experiences of the 'oldest carers' in caring for a dying spouse at home. secondary analysis was undertaken on a subset of data from a larger qualitative interview study; this dataset comprised 17 interviews from participants aged 80 or over. Framework analysis methods were used, with items derived from the thematic analysis of the main study. the oldest carers in this subset demonstrated high levels of resilience and the ability to adapt to their caring role. Caring until death was accepted as an integral part of the commitment made to their partner as part of the 'wedding contract'. Carers felt they benefitted from the support provided by family, friends and care services; however, their own care needs were not always recognised by health and social care services. these findings underscore the complexity of the oldest carers' experiences and challenges in times of illness and end of life. Healthcare professionals should be alerted to the myriad ways caregiving is enacted in serious illness and seek opportunities for developing supportive interventions specifically for older carers. © The Author 2016. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Understanding experiences of and preferences for service user and carer involvement in physical health care discussions within mental health care planning.

PubMed

Small, Nicola; Brooks, Helen; Grundy, Andrew; Pedley, Rebecca; Gibbons, Chris; Lovell, Karina; Bee, Penny

2017-04-13

People with severe mental illness suffer more physical comorbidity than the general population, which can require a tailored approach to physical health care discussions within mental health care planning. Although evidence pertaining to service user and carer involvement in mental health care planning is accumulating, current understanding of how physical health is prioritised within this framework is limited. Understanding stakeholder experiences of physical health discussions within mental health care planning, and the key domains that underpin this phenomena is essential to improve quality of care. Our study aimed to explore service user, carer and professional experiences of and preferences for service user and carer involvement in physical health discussions within mental health care planning, and develop a conceptual framework of effective user-led involvement in this aspect of service provision. Six focus groups and four telephone interviews were carried out with twelve service users, nine carers, three service users with a dual service user and carer role, and ten mental health professionals recruited from one mental health Trust in the United Kingdom. Data was analysed utilising a thematic approach, analysed separately for each stakeholder group, and combined to aid comparisons. No service users or carers recalled being explicitly involved in physical health discussions within mental health care planning. Six prerequisites for effective service user and carer involvement in physical care planning were identified. Three themes confirmed general mental health care planning requirements: tailoring a collaborative working relationship, maintaining a trusting relationship with a professional, and having access to and being able to edit a living document. Three themes were novel to feeling involved in physical health care planning discussions: valuing physical health equally with mental health; experiencing coordination of care between physical-mental health

Mental health crisis and respite services: service user and carer aspirations.

PubMed

Lyons, C; Hopley, P; Burton, C R; Horrocks, J

2009-06-01

There is emerging evidence that crisis resolution services can provide alternatives to hospital admission, reducing demand on inpatient beds. Following a public consultation exercise in Lancashire (England), a team of nurses undertook a study, using interactive research methodology, to gain an understanding of how users and carers define a crisis and what range of crisis services, resources and interventions service users and carers thought would help avoid unnecessary hospital admission. Data collection comprised postal questionnaires and 24 group meetings with service users and carers, which were held during 2006. Data were analysed, and seven themes were identified: (1) definitions of a crisis; (2) access to services; (3) interventions; (4) range of services required (before, during and after crisis); (5) place of treatment; (6) recovery and rehabilitation; and (7) community support. We conclude that expressed preferences of service users and carers for pre-emptive services that are delivered flexibly will present a challenge for service commissioners and providers, particularly where stringent access criteria are used. Home-based pre-emptive services that reduce the need for unnecessary hospital treatment may avoid progression to social exclusion of service users.

A questionnaire to measure satisfaction with community services for informal carers of stroke patients: construction and initial piloting.

PubMed

Simon, Chantal; Little, Paul; Birtwistle, Jon; Kendrick, Tony

2003-03-01

Stroke affects 120 000 people each year in the UK and is the most common cause of adult-onset disability. Most stroke patients are cared for at home by informal carers. Support for these carers is provided by the community services, but although single-item measures have shown that there is a relatively high level of dissatisfaction with those services, there is no specific satisfaction measurement instrument. The present study aimed to construct and initially validate a questionnaire to measure carers' satisfaction with community services for clinical and research purposes. Qualitative interviews with a purposive sample of informal carers of stroke patients identified via stroke unit discharge records gave information about content, context and language. Together with information from the carers' literature, this formed the basis of the questionnaire. A self-completion questionnaire proved unacceptable to carers with a very poor response rate (20%). Face-to-face interviews were more acceptable, with the questionnaire taking approximately 10 minutes to administer. All carers approached agreed to take part and only three carers dropped out from follow up, all because of reasons not related to the study. Initial validity and reliability testing with a sample of 44 carers identified through stroke groups and general practice showed good correlation with a single-item satisfaction measure (RHO = 0.797), test-retest reliability (RHO = 0.885) and inter-rater reliability (RHO = 0.868), and a high degree of internal consistency (Cronbach's alpha = 0.859). Further validation with larger and more diverse groups of informal carers is needed before the questionnaire can be considered to be a robust and reliable tool. Factor analysis revealed seven factors: information about community support and involving the carer; amount, appropriateness and coordination of services; information about stroke; speed of change and concern about the carer; listening to the carer and being heard

Guilt, shame and expressed emotion in carers of people with long-term mental health difficulties: A systematic review.

PubMed

Cherry, Mary Gemma; Taylor, Peter James; Brown, Stephen Lloyd; Rigby, Jake Wilfred; Sellwood, William

2017-03-01

Expressed emotion (EE) is a global index of familial emotional climate, whose primary components are emotional over-involvement (EOI) and critical comments (CC)/hostility. There is a strong theoretical rationale for hypothesising that carers' guilt and shame may be differentially associated with their EOI and CC/hostility respectively. This systematic review investigates the magnitude of these theorised associations in carers of people with long-term mental health difficulties. Electronic searches (conducted in May 2016 across Medline, CINAHL, Embase, PsycINFO and ProQuest) were supplemented with iterative hand searches. Ten papers, reporting data from eight studies, were included. Risk of bias was assessed using a standardised checklist. Relevant data were extracted and synthesised narratively. EOI was positively associated with both guilt and shame, whereas CC/hostility was positively associated with shame. The strength of associations varied depending on whether or not guilt and shame were assessed within the context of the caring relationship. Based on these data, an argument can be made for the refinement, development and evaluation of systemic and individual interventions designed to target carers' guilt and shame. However, more research is needed to clarify the strength of these associations and their direction of effect before firm conclusions can be drawn. Copyright © 2017 The Authors. Published by Elsevier B.V. All rights reserved.

A Needs-led Framework for Understanding the Impact of Caring for a Family Member With Dementia.

PubMed

Pini, Simon; Ingleson, Emma; Megson, Molly; Clare, Linda; Wright, Penny; Oyebode, Jan R

2018-03-19

Approximately half the care for people with dementia is provided by families. It is therefore imperative that research informs ways of maintaining such care. In this study, we propose that a needs-led approach can provide a useful, novel means of conceptualizing the impact of caring on the lives of family carers. Our aim was to develop and present a needs-led framework for understanding how providing care impacts on carers' fulfilment of needs. In this qualitative study, we conducted 42 semistructured interviews with a purposively diverse sample of family carers to generate nuanced contextualized accounts of how caring impacted on carers' lives. Our inductive thematic analysis focused upon asking: "What need is being impacted here?" in order to generate a needs-led framework for understanding. Nine themes were widely endorsed. Each completed the sentence: "Being a carer impacts on fulfilling my need to/for….": Freedom; feel close to my relative; feel in control of my life; be my own person; protect my relative; share/express my thoughts and feelings; take care of myself; feel connected to the people around me; get things done. These needs echo those from other research areas, with relational needs emerging as particularly central. The needs-led approach offers a perspective that is able to capture both stresses and positive aspects of caregiving. We recommend that clinical interviewing using Socratic questioning to discover human needs that are being impacted by caring would provide a valuable starting point for care planning.

Carers' interactions with patients suffering from severe dementia: a difficult balance to facilitate mutual togetherness.

PubMed

Hansebo, Görel; Kihlgren, Mona

2002-03-01

1. A phenomenological-hermeneutic approach was used to illuminate carers' video-recorded interactions in connection with supervision for individualized nursing care. 2. In order to disclose any changes in the carers' interactions with patients suffering from severe dementia the video recordings were conducted before, during and after the intervention. 3. The content of the videos was transcribed as a text, mainly verbal communication. Due to the rich data the videos and text were kept together as a whole in every step of the analysis. 4. After an initial naïve understanding, different subthemes emerged in the structural analyses: promoting competence, struggling for co-operation, deep communication for communion, showing respect for the unique person, skills in balancing power, distance in a negative point of view, and fragmentary nursing situations. 5. The overall theme was 'Carers' balancing in their interactions, verbal as well as non-verbal, to promote a sense of mutual togetherness with the patient'. 6. The supervision intervention contributed to an improvement in carers' skills in balancing in their interactions. In the caring process carers' and patients' shared experiences and, due to patients' disabilities, interactions depended mainly on carers' qualities and capabilities for this confirming nursing care.

Keeping it in the family? People with learning disabilities and families employing their own care and support workers: Findings from a scoping review of the literature

PubMed Central

Manthorpe, Jill; Moriarty, Jo; Cornes, Michelle

2012-01-01

This article focuses on people with learning disabilities and their families who employ care or support workers using public (government) and/or private (self and family) funds. Such consumer-directed support takes place in England through personal budgets and direct payments. Research and material relevant to these employment relationships were explored in a scoping review undertaken by the authors in 2010. The review identified a small number of studies that involved people with learning disabilities as respondents, although more relied on family carers as proxy respondents. The findings from these studies covered recruitment and administration, employment of family members, training needs, the nature and content of employment relationships, and ending employment. The review observed that employment relationships, practices, and dynamics are surprisingly little explored in the literature and generally unobserved. The article concludes with specific messages from the review for family carers, for people with learning disabilities and for care and support workers. PMID:22123678

Key Statistics from the National Survey of Family Growth: Vasectomy

MedlinePlus

... Birth Data NCHS Key Statistics from the National Survey of Family Growth - V Listing Recommend on Facebook ... What's this? Submit Button Related Sites NCHS Listservs Surveys and Data Collection Systems Vital Statistics: Birth Data ...

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

PubMed

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

2013-09-01

Communicative difficulties affect interactions between people with learning disabilities and their carers. Despite such difficulties, however, some carers seem to interact successfully with people who have limited ability to communicate verbally and exhibit challenging behaviour. This study aims to illuminate skilled interaction among carers working in special accommodations for people with learning disabilities. Interactions between 16 caregivers and 11 residents with learning disabilities were recorded on video. Verbal and non-verbal interaction skills among the carers were identified. Four caring situations with people with learning disabilities were chosen to illuminate skilled interaction. The transcribed text was subjected to qualitative content analysis and core stories were created. The results show that skilled interaction between the carers and the people with learning disabilities is based upon being confirming, sharing daily life experience, giving time and space, and using congruent and distinct language. In this paper we present examples that offer concrete suggestions of how to promote successful interaction and create meaning in the shared day-to-day life in special accommodations for people with learning disabilities. © 2012 John Wiley & Sons Ltd.

The impact on the family of the co-existing conditions of children with autism spectrum disorder.

PubMed

Petrou, Alexandra M; Soul, Abigail; Koshy, Beena; McConachie, Helen; Parr, Jeremy R

2018-05-01

We aimed to investigate whether the impact on families of children with Autism Spectrum Disorder (ASD) is associated with the number and/or type of emotional and behavioral co-existing conditions that parents/carers of children with ASD reported as occurring frequently. In addition, we examined whether there was a greater impact on families if their child was male, had lower levels of language, had more severe autism symptomatology, and whether impact was associated with the number and/or type of co-existing conditions. Families were recruited from large UK research databases. 420 parents/carers of children aged 3 years 2 months to 18 years 8 months completed the revised Impact on Family (IoF) Scale and reported on the frequency/rate of their child's co-existing conditions. Parents/carers reported higher mean IoF scores if their child: had a greater number of frequent co-existing conditions; had sleep problems; was only able to communicate physically; and had more severe autism symptomatology. The development and implementation of targeted treatment and management approaches are needed to reduce the impact of co-existing conditions on family life. Autism Res 2018, 11: 776-787. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. Autism Spectrum Disorder (ASD) is commonly associated with emotional and/or behavior conditions that affect family life. Parents/carers of children with ASD who: (a) reported a greater number of frequent co-existing conditions, (b) had sleep problems, (c) were only able to communicate physically, and (d) had more severe symptoms characteristic of autism, reported a greater burden/strain on the family. Treatment approaches to target co-existing conditions alongside characteristics of ASD are needed to reduce their impact on family life. © 2018 International Society for Autism Research, Wiley Periodicals, Inc.

Elderly Demand for Family-based Care and Support: Evidence from a Social Intervention Strategy

PubMed Central

Aboagye, Emmanuel; Agyemang, Otuo Serebour; Tjerbo, Trond

2014-01-01

This paper examines the influence of the national health insurance scheme on elderly demand for family-based care and support. It contributes to the growing concern on the rapid increase in the elderly population globally using micro-level social theory to examine the influence the health insurance has on elderly demand for family support. A qualitative case study approach is applied to construct a comprehensive and thick description of how the national health insurance scheme influences the elderly in their demand for family support. Through focused interviews and direct observation of six selected cases, in-depth information on primary carers, living arrangement and the interaction between the health insurance as structure and elders as agents are analyzed. The study highlights that the interaction between the elderly and the national health insurance scheme has produced a new stratum of relationship between the elderly and their primary carers. Consequently, this has created equilibrium between the elderly demand for support and support made available by their primary carers. As the demand of the elderly for support is declining, supply of support by family members for the elderly is also on the decline. PMID:24576369

Elderly demand for family-based care and support: evidence from a social intervention strategy.

PubMed

Aboagye, Emmanuel; Agyemang, Otuo Serebour; Tjerbo, Trond

2013-12-06

This paper examines the influence of the national health insurance scheme on elderly demand for family-based care and support. It contributes to the growing concern on the rapid increase in the elderly population globally using micro-level social theory to examine the influence the health insurance has on elderly demand for family support. A qualitative case study approach is applied to construct a comprehensive and thick description of how the national health insurance scheme influences the elderly in their demand for family support.Through focused interviews and direct observation of six selected cases, in-depth information on primary carers, living arrangement and the interaction between the health insurance as structure and elders as agents are analyzed. The study highlights that the interaction between the elderly and the national health insurance scheme has produced a new stratum of relationship between the elderly and their primary carers. Consequently, this has created equilibrium between the elderly demand for support and support made available by their primary carers. As the demand of the elderly for support is declining, supply of support by family members for the elderly is also on the decline.

Do people with type 2 diabetes and their carers lose income? (T2ARDIS-4).

PubMed

Holmes, Jeremy; Gear, Elena; Bottomley, Julia; Gillam, Stephen; Murphy, Moira; Williams, Rhys

2003-06-01

T(2)ARDIS is a study of the full costs of care for a sample of people with type 2 diabetes in the UK. This paper reports on individual earnings lost by patients (n=653) and carers (n=253) aged <65 years, based on 1998 values. Mean annual lost earnings are calculated on three different bases. Across the total survey population aged <65 years, mean lost earnings are estimated at pound 869 (S.D. pound 4109) per patient and pound 1300 (S.D. pound 4093) per carer. However, for the sub-set of respondents who actually lose earnings, the mean levels are pound 13841 (S.D. pound 9551) and pound 10960 (S.D. pound 6002), respectively. Patients and carers who lose earnings incur higher personal care-related expenditure than those who do not lose earnings (although for the patients this is not statistically significant). Patients who lose earnings also report poorer health-related quality of life and carers who lose earnings report higher levels of strain. Only one third of carers report receiving state benefits, and for both carers and patients the shortfall between reported benefits received and lost earnings is substantial. A strong association was found between patients' loss of earnings and the presence of diabetic complications (P<0.001), especially micro-vascular complications. Policy priorities should, therefore, include facilitating comprehensive access to state benefits (especially for carers) and a clear focus on reducing the incidence of diabetic complications.

82 Key Statistics on Work and Family Issues. The National Report on Work & Family. Special Report #9.

ERIC Educational Resources Information Center

Bureau of National Affairs, Inc., Washington, DC.

This report was prepared because of the growing national interest in the questions of work and family dynamics. It puts together 82 key statistics on work and family issues in four major areas: child care, parental leave, alternative work schedules, and elder care. In addition, a chapter of miscellaneous statistics covers areas such as the…

The transition to dementia--individual and family experiences of receiving a diagnosis: a review.

PubMed

Robinson, Louise; Gemski, Alan; Abley, Clare; Bond, John; Keady, John; Campbell, Sarah; Samsi, Kritika; Manthorpe, Jill

2011-09-01

Consensus recommends early recognition of memory problems through multi-disciplinary assessment in memory clinics; however, little is known about the experiences of people accessing such services. The aim of this review was to synthesis empirical evidence on patient and carer experiences in the transition to dementia. This review updates an earlier review (Bamford et al., 2004) on the topic of disclosure of the diagnosis of dementia. Key electronic databases were searched including OVID Medline, CINAHL, Web of Science, EMBASE, and Sociological Abstracts; this was supplemented by hand searching of reference lists and contact with experts in the field. Only papers published after 2003 were included. Of the 35 papers included in the review, only one study observed the process of disclosure and only two papers explored the effects on the person with dementia's health. The vast majority of people with dementia wished to know their diagnosis. The key challenges for the person with dementia were coming to terms with losses on multiple levels. Although there may be short-term distress, the majority of people with dementia do not appear to experience long-term negative effects on their psychological health. For family carers, becoming the main decision-maker and adjusting to increased responsibility were common concerns. There is still little empirical research observing the process of diagnostic disclosure in dementia. Studies exploring the views of patients and their families suggest this should be an ongoing process with the provision of support and information tailored to individual needs. The term "Alzheimer's disease" appears to have more negative connotations than the word "dementia".

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

PubMed

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

2017-11-01

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

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…

The Impact of Patient Aggression on Carers Scale: instrument derivation and psychometric testing.

PubMed

Needham, Ian; Abderhalden, Chris; Halfens, Rudolph J G; Dassen, Theo; Haug, Hans-Joachim; Fischer, Joachim E

2005-09-01

Patient aggression towards carers constitutes a problem for patients and carers alike. Patients' aggressive behaviour often leads to adverse consequences for carers, especially nurses. Various extensive instruments have been developed to measure such adverse effects on carers. The 'Impact of Patient Aggression on Carers Scale' (IMPACS) is a short instrument intended for use in monitoring negative consequences of such incidents. The items of the IMPACS were derived basically from a review of the literature on negative effects of patient aggression on nurses. The IMPACS was administered to a convenience sample of nurses working on 14 psychiatric acute admission wards in the German speaking part of Switzerland. Factor analysis led to the exclusion of three of the original items and to an interpretable three-factor solution with all factors demonstrating eigen values higher than 1. The factors demonstrate moderate to good internal consistency. Canonical correlation analysis using the dimensions of the Maslach Burnout Inventory (MBI) produced a correlation coefficient of 0.457, thus demonstrating external reliability. In spite of some caveats such as possible response bias and the necessity of the investigation of the test-retest stability of the scale this study suggests that the IMPACS is a good measure of adverse effects and thus merits further development.

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

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

Stressors and common mental disorder in informal carers--an analysis of the English Adult Psychiatric Morbidity Survey 2007.

PubMed

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

2014-11-01

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. Copyright © 2014 The Authors. Published by Elsevier Ltd.. All rights reserved.

How best to assess quality of life in informal carers of people with dementia; A systematic review of existing outcome measures

PubMed Central

Robinson, Jonah; Robalino, Shannon; Finch, Tracy; McColl, Elaine

2018-01-01

Background In the UK, there are currently 800 000 people living with dementia. This number is expected to double in the next 20 years. Two-thirds of people with dementia live in the community supported by informal carers. Caring for a person with dementia has adverse effects on psychological, physical, social wellbeing and quality of life. The measurement of quality of life of carers of people with dementia is increasingly of interest to health and social care practitioners and commissioners, policymakers, and carers themselves. However, there is lack of consensus on the most suitable instrument(s) for undertaking this. Methods A systematic review of the literature using COSMIN methodology. Searching of electronic databases (Medline, PsycINFO, CINAHL and Web of Science), reference list and citation searching of key papers was undertaken. COSMIN methodology was used to simultaneously extract data from and assess methodological quality of included studies, and make a recommendation for the instrument with the most high quality evidence for its measurement properties. Results Ten instruments were suitable for inclusion in this review. The Carer well-being and support questionnaire (CWS) has the best quality evidence for the greatest number of measurement of properties. The Caregiver Well-Being Scale is also worthy of consideration. There is not presently a measure which could be recommended for use in economic evaluations, however the Impact of Alzheimer’s Disease on the Caregiver questionnaire (IADCQ) could potentially be used following further investigation of its measurement properties in a representative population. Conclusion The CWS is the most appropriate instrument to recommend for the assessment of quality of life in informal carers of people with dementia at present. All instruments included in this review would benefit from more rigorous evaluation of their measurement properties. PMID:29538433

EQUIP training the trainers: an evaluation of a training programme for service users and carers involved in training mental health professionals in user-involved care planning.

PubMed

Fraser, C; Grundy, A; Meade, O; Callaghan, P; Lovell, K

2017-08-01

WHAT IS KNOWN ON THE SUBJECT?: UK NHS policy highlights the importance of user and carer involvement in health professional training. We know little about service user and carer motivations and experiences of accessing training courses for delivering training to health professionals and how well such courses prepare them for delivering training to healthcare professionals. 'Involvement' in training has often been tokenistic and too narrowly focused on preregistration courses. There is limited data on how best to prepare and support potential service user and carer trainers. WHAT DOES THIS PAPER ADD TO EXISTING KNOWLEDGE?: This study adds to the international literature by highlighting service user and carer motivations for accessing a training course for delivering training to health professionals. Service users and carers wanted to gain new skills and confidence in presentation/facilitation as well as to make a difference to healthcare practice. We also learned that service users desired different levels of involvement in training facilitation - some wanted to take a more active role than others. A one-size-fits-all approach is not always appropriate. Encountering resistance from staff in training was a previously unidentified challenge to service user and carers' experience of delivering training in practice and is a key challenge for trainers to address in future. Professional training involvement can be enhanced via specialist training such as the EQUIP training the trainers programme evaluated here. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: When training service users and carers to deliver training to mental health professionals, it is important that service users are equipped to deal with resistance from staff. It is important that service user and carer roles are negotiated and agreed prior to delivering training to healthcare professionals to accommodate individual preferences and allay anxieties. Training for service users and carers must be offered

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

For better or worse: Factors predicting outcomes of family care of older people over a one-year period. A six-country European study

PubMed Central

Bien, Barbara; McKee, Kevin; Krevers, Barbro; Mestheneos, Elizabeth; Di Rosa, Mirko; von dem Knesebeck, Olaf; Kofahl, Christopher

2018-01-01

Objectives Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period. Methods Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries (Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad’s status at follow-up. Results Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems (OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much

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

PubMed

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

2017-09-01

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

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…

[Factors Influencing the Workload of Carers in the Field of Disability Work in Residential Facilities].

PubMed

Habermann-Horstmeier, L; Limbeck, K

2018-05-01

So far, there have been only few indications that workers in the field of disability assistance - similar to the caregivers - feel particularly strongly burdened by their work. As part of the BMBF study, nationwide 400 carers in residential facilities for people with disabilities in Germany were questioned about their work situation. For the present study, various factors were taken into consideration that may have an influence upon how much carers feel burdened. The obtained data were analyzed using univariate and bivariate methods, and possible statistical correlations were reviewed as part of a regression analysis. It became clear that more than half (56.1%) of the carers in residential facilities for persons with disabilities in Germany feel burdened by their professional situation. Some factors that contribute to carers experiencing their work as stressful could be identified. These are, in addition to the ownership of the facility, for example, also age, gender, length of service, scope of work and level of the hierarchy of carers. Thus, male executives assess their jobs as significantly less onerous than their female counterparts; however, male carers in non-management positions tend to assess their work as more stressful than their female colleagues. The 25- to 34-year-old and 45- to 65-year-old non-executive professionals feel the most stress. In the group aged 25-34 years, it is especially women who feel heavily burdened. Even those who have already been working for more than 20 years in an institution feel the load as quite heavy. And if there is a lot of overtime added to the ordinary shift or weekend service, this is perceived as a significant burden by all carers, but especially by younger women. Thus, the analysis of factors that contribute to carers perceiving their work as stressful showed considerable differences in the degree of workload between men and women, executives and non-executive professionals as well as between younger and older staff

Family Voices: Life for Family Carers of People with Intellectual Disabilities in Ireland

ERIC Educational Resources Information Center

Chadwick, Darren D.; Mannan, Hasheem; Garcia Iriarte, Edurne; McConkey, Roy; O'Brien, Patricia; Finlay, Frieda; Lawlor, Anne; Harrington, Gerry

2013-01-01

Background: Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers. Materials and Method: This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings…

Risk factor characteristics in carers who physically abuse or neglect their elderly dependants.

PubMed

Reay, A M; Browne, K D

2001-02-01

This study investigates the prevalence of, and differences in, risk factor characteristics in a sample of two select populations of carers, one of which physically abused their elderly dependants and one of which neglected them. Nineteen carers (nine who had physically abused and 10 who had neglected their elderly relatives), who were referred to clinical psychology by either their general practitioner or their psychiatrist, were invited to take part in this study. A detailed history of risk factors was obtained, including history of alcohol dependency, type and history of mental ill health, history of maltreatment earlier in life, who they were caring for, how long they had been a carer and whether they felt isolated as a carer. Subjects were then given five assessments to determine whether there were any differences between the two groups. These were the Conflict Tactic Scale, Strain Scale, Beck Depression Inventory, Beck Anxiety Inventory and Cost of Care Index. An examination of the risk factors suggests that heavy alcohol consumption and past childhood abuse by fathers were likely to lead to physical abuse. Significantly higher conflict and depression scores were also present in the physical abuse group, while the neglect group had significantly higher anxiety scores. It is suggested that these findings should be incorporated into an assessment of future risk of abuse or neglect by the carer.

Self-care and end of life care--patients' and carers' experience a qualitative study utilising serial triangulated interviews.

PubMed

Johnston, Bridget Margaret; Milligan, Stuart; Foster, Claire; Kearney, Nora

2012-08-01

This study aimed to understand patient and carer experiences of end of life care and to explore how patients care for themselves at the end of life in Scotland. (1) From the perspectives of patients and carers, what are their experience of advanced cancer and end of life care? (2) What self-care strategies enable patient and carers to cope with their end of life care? This paper reports a qualitative study using in-depth, unstructured serial interviews involving collaboration with and participation of people affected by advanced cancer. The study was a 2-year, three-phase study with multiple methods of data collection. The study was conducted in the Highlands and West of Scotland including rural, remote and socially deprived areas. Patient experience data were collected from 20 patients as well as their main carer and the health professional who they perceived had given them the most support. Triangulating data in this way allowed the totality of the patient experience to be captured. A total of 71 interviews were conducted. Data were analysed both within and across cases using framework analysis with the aid of QSR NVIVO 7. Maintaining normality and preparing for death were the two most important areas, for the patients in the study, as far as their self-care was concerned. Patients wished support that enabled them to maintain their independence and remain at home. People managed their illness both physically and emotionally; managing and adjusting to their lack of independence and keeping control were keys to most participants. Self-care is important to this group of people. People receiving end of life care want to and are able to engage in research. The findings are timely and relevant to current changes in palliative care policy and practice.

General Nutrition Knowledge among Carers at Group Homes for People with Intellectual Disability

ERIC Educational Resources Information Center

Hamzaid, N. H.; Flood, V. M.; Prvan, T.; O'Connor, H. T.

2018-01-01

Background: Good nutrition knowledge among carers of people with intellectual disability (ID) living in group homes is essential as they have a primary role in food provision for residents. Research on the nutrition knowledge of carers is limited. Method: This cross-sectional study assessed the level of general nutrition knowledge in a convenience…

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

PubMed

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

2017-03-01

Previous UK research has found expressed unmet need for services by unpaid working carers and among disabled and older people. There are, however, suggestions from research that views on unmet needs for services differ between carers and care-recipients. Working carers in the UK say that the care-recipient is sometimes reluctant to accept services and the few international comparative dyad studies that have been carried out find that carers perceive higher unmet need than care-recipients. Recent policy discussions in England have also recognised that there may be differences of opinion. We collected data in 2013 from working carer/care-recipient dyads in England about perceived need for services for the care-recipient, disability, unpaid care hour provision and individual and socio-demographic characteristics. We find that care-recipients as well as their carers perceive high unmet need for services, although carers perceive higher unmet need. For carers, unmet need is associated with the disability of the carer-recipient and being the daughter or son of the care-recipient; for care-recipients it is associated with unpaid care hours, carers' employment status and carers' health. The majority of dyads agree on need for services, and agreement is higher when the working carer provides care for 10 hours or more hours a week. Services for care-recipients may enable working carers to remain in employment so agreement on needs for services supports the implementation of legislation, policy and practice that has a duty to, or aims to, support carer's employment. © 2016 John Wiley & Sons Ltd.

Peer support for CKD patients and carers: overcoming barriers and facilitating access.

PubMed

Taylor, Francesca; Gutteridge, Robin; Willis, Carol

2016-06-01

Peer support is valued by its users. Nevertheless, there is initial low take-up of formal peer support programmes among patients with chronic kidney disease (CKD), with fewer patients participating than expressing an interest. There is little evidence on reasons for low participation levels. Few studies have examined the perspectives of carers. To explore with CKD patients and carers their needs, wants and expectations from formal peer support and examine how barriers to participation may be overcome. Qualitative interviews with a sample of 26 CKD stage five patients and carers. Principles of Grounded Theory were applied to data coding and analysis. Six NHS Hospital Trusts. Whilst informal peer support might occur naturally and is welcomed, a range of emotional and practical barriers inhibit take-up of more formalized support. Receptivity varies across time and the disease trajectory and is associated with emotional readiness; patients and carers needing to overcome complex psychological hurdles such as acknowledging support needs. Practical barriers include limited understanding of peer support. An attractive peer relationship is felt to involve reciprocity based on sharing experiences and both giving and receiving support. Establishing rapport is linked with development of reciprocity. There is potential to facilitate active uptake of formal peer support by addressing the identified barriers. Our study suggests several facilitation methods, brought together in a conceptual model, including clinician promotion of peer support as an intervention suitable for anyone with CKD and their carers, and opportunity for choice of peer supporter. © 2015 The Authors Health Expectations Published by John Wiley & Sons Ltd.

Mental health, coercion and family caregiving: issues from the international literature.

PubMed

Rugkåsa, Jorun; Canvin, Krysia

2017-08-01

This article summarises current knowledge about two aspects of family care for people with mental illness: potentially pressurising or coercive aspects of family life; and family carers' experiences of being involved in coercive service interventions. There is a paucity of studies on these topics, especially outside Europe, North America and Australasia, and further research is recommended.

Silent strain of caregiving: exploring the best predictors of distress in family carers of geriatric patients.

PubMed

Bień-Barkowska, Katarzyna; Doroszkiewicz, Halina; Bień, Barbara

2017-01-01

The aim of this article was to identify the best predictors of distress suffered by family carers (FCs) of geriatric patients. A cross-sectional study of 100 FC-geriatric patient dyads was conducted. The negative impact of care (NIoC) subscale of the COPE index was dichotomized to identify lower stress (score of ≤15 on the scale) and higher stress (score of ≥16 on the scale) exerted on FCs by the process of providing care. The set of explanatory variables comprised a wide range of sociodemographic and care-related attributes, including patient-related results from comprehensive geriatric assessments and disease profiles. The best combination of explanatory variables that provided the highest predictive power for distress among FCs in the multiple logistic regression (LR) model was determined according to statistical information criteria. The statistical robustness of the observed relationships and the discriminative power of the model were verified with the cross-validation method. The mean age of FCs was 57.2 (±10.6) years, whereas that of geriatric patients was 81.7 (±6.4) years. Despite the broad initial set of potential explanatory variables, only five predictors were jointly selected for the best statistical model. A higher level of distress was independently predicted by lower self-evaluation of health; worse self-appraisal of coping well as a caregiver; lower sense of general support; more hours of care per week; and the motor retardation of the cared-for person measured with the speed of the Timed Up and Go (TUG) test. Worse performance on the TUG test was only the patient-related predictor of distress among the variables examined as contributors to the higher NIoC. Enhancing the mobility of geriatric patients through suitably tailored kinesitherapeutic methods during their hospital stay may mitigate the burden endured by FCs.

The influence of patient acuity on satisfaction with emergency care: perspectives of family, friends and carers.

PubMed

Ekwall, Anna; Gerdtz, Marie; Manias, Elizabeth

2008-03-01

To investigate the factors that influence satisfaction with emergency care among individuals accompanying patients to the emergency department and explore agreement between the triage nurse and accompanying person regarding urgency. Many patients seeking treatment in hospital are escorted by an accompanying person, who may be a friend, family member or carer. Several factors influence patient satisfaction with emergency care, including waiting time and time to treatment. It is also influenced by provision of information and interpersonal relations between staff and patients. Research on satisfaction has focused on the patient perspective; however, individuals who accompany patients are potential consumers. Knowledge about the ways accompanying persons perceive the patient's medical condition and level of urgency will identify areas for improved patient outcomes. A prospective cross-sectional survey with a consecutive sample (n = 128 response rate 83.7%) was undertaken. Data were collected in an Australian metropolitan teaching hospital with about 32,000 visits to the emergency department each year. The Consumer Emergency Satisfaction Scale was used to measure satisfaction with nursing care. Significant differences in perceptions of patient urgency between accompanying persons and nurses were found. Those people accompanying patients of a higher urgency were significantly more satisfied than those accompanying patients of a lower urgency. These results were independent of real waiting time or the accompanying person's knowledge of the patients' triage status. In addition, older accompanying persons were more satisfied with emergency care than younger accompanying persons. Little attention has been paid to the social interactions that occur between nurses and patients at triage and the ways in which these interactions might impact satisfaction with emergency care. Good interpersonal relationships can positively influence satisfaction with the emergency visit. This

Evaluation of a problem-solving (PS) techniques-based intervention for informal carers of patients with dementia receiving in-home care.

PubMed

Chiu, Mary; Pauley, Tim; Wesson, Virginia; Pushpakumar, Dunstan; Sadavoy, Joel

2015-06-01

The value of care provided by informal carers in Canada is estimated at $26 billion annually (Hollander et al., 2009). However, carers' needs are often overlooked, limiting their capacity to provide care. Problem-solving therapy (PST), a structured approach to problem solving (PS) and a core principle of the Reitman Centre CARERS Program, has been shown to alleviate emotional distress and improve carers' competence (Chiu et al., 2013). This study evaluated the effectiveness of problem-solving techniques-based intervention based on adapted PST methods, in enhancing carers' physical and emotional capacity to care for relatives with dementia living in the community. 56 carers were equally allocated to a problem-solving techniques-based intervention group or a control arm. Carers in the intervention group received three 1 hr visits by a care coordinator (CC) who had been given advanced training in PS techniques-based intervention. Coping, mastery, competence, burden, and perceived stress of the carers were evaluated at baseline and post-intervention using standardized assessment tools. An intention-to-treat analysis utilizing repeated measures ANOVA was performed on the data. Post-intervention measures completion rate was 82% and 92% for the intervention and control groups, respectively. Carers in the intervention group showed significantly improved task-oriented coping, mastery, and competence and significantly reduced emotion-oriented coping, burden and stress (p < 0.01-0.001). Control carers showed no change. PS techniques, when learned and delivered by CCs as a tool to coach carers in their day-to-day caregiving, improves carers' caregiving competence, coping, burden, and perceived stress. This may reduce dependence on primary, psychiatric, and institutional care. Results provide evidence that establishing effective partnerships between inter-professional clinicians in academic clinical health science centers, and community agencies can extend the reach of the

Is the qualitative research interview an acceptable medium for research with palliative care patients and carers?

PubMed Central

Gysels, Marjolein; Shipman, Cathy; Higginson, Irene J

2008-01-01

Background Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview. Methods A descriptive qualitative study. The data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study. Results The interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible. Conclusion The open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview. PMID:18435846

In a bad place: Carers of patients with head and neck cancer experiences of travelling for cancer treatment.

PubMed

Balfe, Myles; Keohane, Kieran; O' Brien, Katie; Gooberman-Hill, Rachael; Maguire, Rebecca; Hanly, Paul; O' Sullivan, Eleanor; Sharp, Linda

2017-10-01

To explore the effect that treatment-related commuting has on carers of patients with head and neck cancer. Semi-structured interviews, thematically analysed, with 31 carers. Treatment-related commuting had a considerable impact on carers of patients with head and neck cancer, both in practical terms (economic costs, disruption) and also in psychological terms. Many carers of patients with head and neck cancer described becoming distressed by their commute. Some carers from large urban cities appeared to have hidden commuting burdens. Some carers respond to commuting stress by 'zoning out' or becoming 'like zombies'. Treatment-related travel for head and neck cancer can have significant practical and psychological impacts. Health professionals should be aware of the impacts that commuting can have on head and neck caregivers. Health services may be able to take practical steps, such as providing subsidized parking, to address head and neck carergivers' difficulties. Copyright © 2017 Elsevier Ltd. All rights reserved.

OA20 The positioning of family, friends, community, and service providers in support networks for caring at end-of-life: a social network analysis.

PubMed

Leonard, Rosemary; Horsfall, Debbie; Rosenberg, John; Noonan, Kerrie

2015-04-01

Although there is ample evidence of the risk to carers from the burden of caring, there is also evidence that a caring network can relieve the burden on the principal carer, strengthen community relationships, and increase 'Death Literacy' in the community. There is often an assumption that, in caring networks, family and service providers are central and friends and community are marginal. We examined whether this is the case in practice using SNA. To identify the relative positioning of family, friends, community, and service providers in caring networks. In interviews with carers (N = 23) and focus groups with caring networks (N = 13) participants were asked to list the people in the caring network and rate the strength of their relationships to them (0 no relationship to 3 strong relationship). SNA in UCInet was used to map the networks, examine density (number and strength of relationships) across time (when caring began to the present) and across relationship types (family, friends, community, and service providers) supplemented by qualitative data. The analysis revealed significant increases in the density of the networks over time. The density of relationships with friends was similar to that other family. Community and service providers had significantly lower density. Qualitative analysis revealed that often service providers were not seen as part of the networks. To avoid carer burnout, it is important not to make assumptions about where carers obtain support but work with each carer to mobilise any support that is available. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

For Dr. Nancy Snyderman's Parents, Staying Close to Family Is Key

MedlinePlus

... Issues Feature: Senior Living For Dr. Nancy Snyderman's Parents, Staying Close to Family Is Key Past Issues / ... home. "Watching my children grow closer to my parents has been a blessing, and having us nearby ...

How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study.

PubMed

Lord, Kathryn; Livingston, Gill; Robertson, Sarah; Cooper, Claudia

2016-03-21

People with dementia and their relatives find decisions about the person with dementia living in a care home difficult. We interviewed 20 people with dementia or family carers around the time of this decision in order to design a decision-aid. Decision-makers balanced the competing priorities of remaining somewhere familiar, family's wish they remain at home, reduction of risk and effects on carer's and person with dementia's physical health. The person with dementia frequently resented their lack of autonomy as decisions about care home moves were made after insight and judgment were impaired. Family consultation usually helped carers but sometimes exacerbated tensions. Direct professional support was appreciated where it was available. There is a need for healthcare professionals to facilitate these conversations around decision-making and to include more than signposting to other organisations. There is a need for a healthcare professional facilitated decision-aid. This should detail what might change for the person with dementia and their carer, possible resources and alternatives and assist in facilitating discussion with the wider family; further research will develop and test a tool to facilitate decision making about place of care needs.

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

PubMed

Alzougool, Basil; Chang, Shanton; Gray, Kathleen

2017-09-01

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

An integrative review of information and communication technology based support interventions for carers of home dwelling older people

PubMed Central

Bergström, Aileen L.; Hanson, Elizabeth

2018-01-01

BACKGROUND: A growing number of studies of informal carers of older people reveal positive results concerning support via Information and Communication Technologies (ICT). Systematic examination of factors that have a potential impact on carer outcomes are needed to inform future research. OBJECTIVE: To explore studies concerning ICT support of adult carers of older people and to identify study characteristics that have a potential impact on carer outcomes. METHODS: This integrative review includes 123 studies published since 2005. Fundamental questions for designing sensitive support interventions; ‘who, what, and how’ were applied to a synthesis of the results. RESULTS: Identified characteristics from the studies responding to the who question included variables of the carers, such as their relationship with the care recipient or their ethnicity. Characteristics related to the what question related to the types of interventions, and the how question concerned the different services or programs offered, the idiosyncratic needs of the carers, and the types of technologies used. CONCLUSION: Results are discussed according to micro, meso and macro levels of analysis. This extensive review can inform future studies and highlight the evidence in the area for decision makers, practitioners and/or NGOs working with innovative forms of support for carers of older people. PMID:29527109

The role of personal and key resources in the family-to-work enrichment process.

PubMed

Tement, Sara

2014-10-01

Based on the work-home resources model, the aim of the present research was to test a process model of family-to-work enrichment by examining whether self-efficacy (i.e., personal resource) mediates the relationship between support from one's family and work engagement. Further, it was assumed that positive affectivity (i.e., key resource) moderates the relation between family support and self-efficacy. Using an occupationally heterogeneous sample of Slovenian employees (n = 738), we found support for a mediating effect of self-efficacy as well as for the moderating role of positive affectivity. In general, our results broaden the understanding of work-family enrichment processes and provide support for the work-home resources model. In addition, they point to the relevant role of personal and key resources in work-family interactions. © 2014 Scandinavian Psychological Associations and John Wiley & Sons Ltd.

[Dementia in families with a Turkish migration background. Organization and characteristics of domestic care arrangements].

PubMed

Mogar, M; von Kutzleben, M

2015-07-01

Until recently public health and health services research has not been concerned with people suffering from dementia with a Turkish migration background as a priority. There is little evidence about the situation of this population; however, it is known that these individuals almost always live with their families and are cared for by their families generally without seeking professional support. The aim of this study was to gain insight into the organization and characteristics of home-based care arrangements for people suffering from dementia with a Turkish migration background from the family carer's perspective. Interviews with seven family carers. The principles of the grounded theory served as a framework for data analysis. Unconditional commitment to caring for a family member with dementia was identified as the main characteristic of care arrangements in families with a Turkish migration background. Dementia is not a factor that has an impact on the decision of families to assume care responsibility for an affected family member and there is a lack of knowledge about dementia in general. There are various inhibiting factors for the utilization of formal services and the family carers in this sample complained that the available services are not culturally sensitive. There seems to be an extensive need for information and counselling regarding care dependency and dementia among the Turkish community. To provide personal-centred care and relief to these families in the future, efforts should be made to adapt the current care system to the specific needs and demands of this population. Cultural sensitivity in general and individual subjective needs of persons with a Turkish migration background affected by dementia should be taken into account.

Communication and context are important to Indigenous children with physical disability and their carers at a community-based physiotherapy service: a qualitative study.

PubMed

Greenstein, Caroline; Lowell, Anne; Thomas, David

2016-01-01

What are the experiences of Indigenous children with physical disability and their carers of their community-based physiotherapy service? What factors influence their experiences of the physiotherapy service and how could the service be improved? A qualitative study using in-depth, semi-structured open-ended interviews consistent with the researchers' interpretivist perspectives and ethical principles of Indigenous health research. Interviews were audio recorded, transcribed and coded for themes with qualitative research software using inductive analysis. The interviews were then checked for transcription accuracy and the themes were confirmed with the participants. Nine parents and foster carers of children with physical disability aged 0 to 21 years, five children and youth with physical disability aged 8 to 21 years. The data generated three themes, which informed practice recommendations: carers of children with physical disability experience increased demands and complexity in their lives; relationships involving caring, consistency and communication are important to consumers using the physiotherapy service; and being Indigenous influences consumers' experiences in ways that may not be obvious to non-Indigenous service providers. The issue of communication underpinned the participants' experiences throughout these themes. The research highlighted the importance of effective communication, developing relationships, viewing the child wholistically and recognising the influence of being Indigenous on clients' healthcare needs and experiences. The results suggested that community-based physiotherapists adopt a family/person-centred, context-specific approach when working with Indigenous children with a physical disability and their carers. Copyright © 2015 Australian Physiotherapy Association. Published by Elsevier B.V. All rights reserved.

Lived experience researchers partnering with consumers and carers to improve mental health research: Reflections from an Australian initiative.

PubMed

Banfield, Michelle; Randall, Rebecca; O'Brien, Mearon; Hope, Sophie; Gulliver, Amelia; Forbes, Owen; Morse, Alyssa R; Griffiths, Kathleen

2018-05-30

Consumer and carer involvement in mental health research is a growing and developing field. Whilst there has been policy and in-principle support for such involvement from governments around the world, lived experience researchers conducting academic research in partnership with other consumers and carers remains uncommon. The Australian Capital Territory Consumer and Carer Mental Health Research Unit is based at The Australian National University and employs academic researchers with lived experience to undertake research directly relevant to the needs of mental health consumers and carers with the aim of influencing policy and practice. In this study, we share our experience of developing and conducting research within ACACIA to provide a model for meaningfully engaging mental health consumers and carers throughout the research process. © 2018 Australian College of Mental Health Nurses Inc.

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

ERIC Educational Resources Information Center

Koski, Katja; Launonen, Kaisa

2012-01-01

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

Music in the family: music making and music therapy with young children and their families.

PubMed

Wetherick, Donald

2009-01-01

Songs and singing games are a healthy part of young children's social, emotional and cognitive development. Such shared music making can facilitate and strengthen relationships between parents and children. Family health workers can encourage carers' informal uses of music with their children. In cases of developmental delay, disability, severe illness or family stress, music can continue to have a significant role in supporting children and parents. In some cases referral to specialist music therapy services may be appropriate for assessment and/or treatment.

Assessment of mental health of carers according to patient stage of idiopathic Parkinson's disease.

PubMed

Olgun Yazar, Hülya; Yazar, Tamer; Yancar Demir, Esra; Cankaya, Soner; Enginyurt, Özgür

2018-05-30

In this study the aim was to collect data to assess the mental health of carers for patients with diagnosis of idiopathic Parkinson's disease (IPD) according to disease stage and to examine precautions to reduce the patient and disease load on carers. The study included 144 patients with staging according to modified Hoehn and Yahr criteria and 144 patient relatives who provided care support for patients every day, for some or all of the day, and who were over the age of 18 years and accepted participation in the research. Our prospective and cross-sectional study performed detailed neurological examination of patients, and after completing the 'Personal Information Form' with the interviewer every patient, with idiopathic Parkinson's disease (IPD) according to 'UK Brain Bank' diagnostic criteria, had the 'Unified Parkinson's Disease Rating Scale (UPDRS)' and 'Modified Hoehn and Yahr scale (HYS)' applied. Carers first completed the 'Personal Information Form' and then had the 'Short Symptom Inventory (SSI)' applied. As the stage of disease increased, the points for all sub-scales of the Short Symptom Inventory increased. With the parallel increase in disease scores and UPDRS stage scores, the points obtained by carers on the SSI sub-scales increased. This data shows that with progressing disease stage, the load on the carer increases and mental health begins to be disrupted.

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

PubMed

Albert, Rikke; Simpson, Alan

2015-12-01

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

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"…

"Over time it just becomes easier…": parents of people with Angelman syndrome and Prader-Willi syndrome speak about their carer role.

PubMed

Thomson, Allyson; Glasson, Emma; Roberts, Peter; Bittles, Alan

2017-04-01

This study investigated two of the stresses experienced by parents caring for offspring with Angelman syndrome (AS) and Prader-Willi syndrome (PWS) in Western Australia, and identified their coping strategies. Parents of 19 offspring with AS and PWS participated in the Family Stress and Coping Interview which provides a stress level score, and a discussion of stressors and coping methods associated with 24 life situations, two of which are reported. All text was examined using directed content analysis. Family carers (14/19) reported high stress associated with the initial diagnosis of AS or PWS in their offspring; and finding time for themselves. Stressors identified included lack of quality information about the disorder, time constraints and physical and emotional tiredness. Parents adopted a variety of coping strategies, including learning about the disorder, accepting the situation, seeking instrumental and social supports and dealing with problems. No specific coping strategy was associated with reduced stress. However, parents felt that accurate and timely information during the diagnostic period helped. Parents used family and community support although there were difficulties accessing respite care. It is advised that government agencies, service providers, family members and peer support associations should provide practical and emotional support to assist the parents of offspring with AS and PWS, and indeed any form of intellectual disability, across the lifespan. Implications for Rehabilitation Long-term caring for offspring with AS or PWS can involve considerable stress for parents. Stress has been associated with poorer health outcomes for parental carers. Parents need a variety of practical and emotional supports to cope with stress, including timely access to information.

Carers' experiences of involvement in care planning: a qualitative exploration of the facilitators and barriers to engagement with mental health services.

PubMed

Cree, Lindsey; Brooks, Helen L; Berzins, Kathryn; Fraser, Claire; Lovell, Karina; Bee, Penny

2015-08-29

Formal recognition and involvement of carers in mental health services has been the focus of recent policy and practice initiatives as well as being supported by carers themselves. However, carers still report feeling marginalised and distanced from services. A prominent theme is that that they are not listened to and their concerns are not taken seriously. Compared to service user views, the reasons underpinning carers' dissatisfaction with care-planning procedures have been relatively neglected in the research literature, despite the substantial and significant contribution that they make to mental health services. The aim of the study was to explore carers' experiences of the care planning process for people with severe mental illness. Qualitative interviews and focus groups were undertaken with carers. Data were combined and analysed using framework analysis. Whilst identifying a shared desire for involvement and confirming a potential role for carers within services, our data highlighted that many carers perceive a lack of involvement in care planning and a lack of recognition and appreciation of their role from health professionals. Barriers to involvement included structural barriers, such as the timing and location of meetings, cultural barriers relating to power imbalances within the system and specific barriers relating to confidentiality. This qualitative study led by a researcher who was a carer herself has developed the understanding of the potential role of carers within the care planning process within mental health services, along with the facilitators and barriers to achieving optimal involvement.