36
views
0
recommends
+1 Recommend
0 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

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

      review-article

      Read this article at

      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Background:

          This study is based on people dying at home relying on the care of unpaid family carers. There is growing recognition of the central role that family carers play and the burdens that they bear, but knowledge gaps remain around how to best support them.

          Aim:

          The aim of this study is to review the literature relating to the perspectives of family carers providing support to a person dying at home.

          Design:

          A narrative literature review was chosen to provide an overview and synthesis of findings. The following search terms were used: caregiver, carer, ‘terminal care’, ‘supportive care’, ‘end of life care’, ‘palliative care’, ‘domiciliary care’ AND home AND death OR dying.

          Data sources:

          During April–May 2013, Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycINFO, Pubmed, Cochrane Reviews and Citation Indexes were searched. Inclusion criteria were as follows: English language, empirical studies and literature reviews, adult carers, perspectives of family carers, articles focusing on family carers providing end-of-life care in the home and those published between 2000 and 2013.

          Results:

          A total of 28 studies were included. The overarching themes were family carers’ views on the impact of the home as a setting for end-of-life care, support that made a home death possible, family carer’s views on deficits and gaps in support and transformations to the social and emotional space of the home.

          Conclusion:

          Many studies focus on the support needs of people caring for a dying family member at home, but few studies have considered how the home space is affected. Given the increasing tendency for home deaths, greater understanding of the interplay of factors affecting family carers may help improve community services.

          Related collections

          Most cited references28

          • Record: found
          • Abstract: found
          • Article: not found

          Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

          Background Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. Objectives 1. To quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarise the current evidence on cost-effectiveness. Search methods We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). Main results We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta-analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi2 = 20.57, degrees of freedom (df) = 6, P value = 0.002; I2 = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost-effectiveness (six studies) is inconclusive. Authors' conclusions The results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies. PLAIN LANGUAGE SUMMARY Effectiveness and cost-effectiveness of home-based palliative care services for adults with advanced illness and their caregivers When faced with the prospect of dying with an advanced illness, the majority of people prefer to die at home, yet in many countries around the world they are most likely to die in hospital. We reviewed all known studies that evaluated home palliative care services, i.e. experienced home care teams of health professionals specialised in the control of a wide range of problems associated with advanced illness – physical, psychological, social, spiritual. We wanted to see how much of a difference these services make to people's chances of dying at home, but also to other important aspects for patients towards the end of life, such as symptoms (e.g. pain) and family distress. We also compared the impact on the costs with care. On the basis of 23 studies including 37,561 patients and 4042 family caregivers, we found that when someone with an advanced illness gets home palliative care, their chances of dying at home more than double. Home palliative care services also help reduce the symptom burden people may experience as a result of advanced illness, without increasing grief for family caregivers after the patient dies. In these circumstances, patients who wish to die at home should be offered home palliative care. There is still scope to improve home palliative care services and increase the benefits for patients and families without raising costs.
            Bookmark
            • Record: found
            • Abstract: found
            • Article: not found

            Synthesising qualitative and quantitative evidence: a review of possible methods.

            The limitations of traditional forms of systematic review in making optimal use of all forms of evidence are increasingly evident, especially for policy-makers and practitioners. There is an urgent need for robust ways of incorporating qualitative evidence into systematic reviews. In this paper we provide a brief overview and critique of a selection of strategies for synthesising qualitative and quantitative evidence, ranging from techniques that are largely qualitative and interpretive through to techniques that are largely quantitative and integrative. A range of methods is available for synthesising diverse forms of evidence. These include narrative summary, thematic analysis, grounded theory, meta-ethnography, meta-study, realist synthesis, Miles and Huberman's data analysis techniques, content analysis, case survey, qualitative comparative analysis and Bayesian meta-analysis. Methods vary in their strengths and weaknesses, ability to deal with qualitative and quantitative forms of evidence, and type of question for which they are most suitable. We identify a number of procedural, conceptual and theoretical issues that need to be addressed in moving forward with this area, and emphasise the need for existing techniques to be evaluated and modified, rather than inventing new approaches.
              Bookmark
              • Record: found
              • Abstract: found
              • Article: not found

              End-of-life care and the effects of bereavement on family caregivers of persons with dementia.

              Although family caregiving has been intensively studied in the past decade, little attention has been paid to the impact of end-of-life care on caregivers who are family members of persons with dementia or to the caregivers' responses to the death of the patient. Using standardized assessment instruments and structured questions, we assessed the type and intensity of care provided by 217 family caregivers to persons with dementia during the year before the patient's death and assessed the caregivers' responses to the death. Half the caregivers reported spending at least 46 hours per week assisting patients with activities of daily living and instrumental activities of daily living. More than half the caregivers reported that they felt they were "on duty" 24 hours a day, that the patient had frequent pain, and that they had had to end or reduce employment owing to the demands of caregiving. Caregivers exhibited high levels of depressive symptoms while providing care to the relative with dementia, but they showed remarkable resilience after the death. Within three months of the death, caregivers had clinically significant declines in the level of depressive symptoms, and within one year the levels of symptoms were substantially lower than levels reported while they were acting as caregivers. Seventy-two percent of caregivers reported that the death was a relief to them, and more than 90 percent reported belief that it was a relief to the patient. End-of-life care for patients with dementia was extremely demanding of family caregivers. Intervention and support services were needed most before the patient's death. When death was preceded by a protracted and stressful period of caregiving, caregivers reported considerable relief at the death itself. Copyright 2003 Massachusetts Medical Society
                Bookmark

                Author and article information

                Journal
                Palliat Med
                Palliat Med
                PMJ
                sppmj
                Palliative Medicine
                SAGE Publications (Sage UK: London, England )
                0269-2163
                1477-030X
                June 2015
                June 2015
                : 29
                : 6
                : 487-495
                Affiliations
                [1 ]Faculty of Health and Medicine, Lancaster University, Lancaster, UK
                [2 ]Health and Care Directorate, Cumbria County Council, Carlisle, UK
                Author notes
                [*]Sheila Payne, Faculty of Health and Medicine, Lancaster University, Bailrigg, Lancaster LA1 4YL, UK. Email: s.a.payne@ 123456lancaster.ac.uk
                Article
                10.1177_0269216314565706
                10.1177/0269216314565706
                4436280
                25634635
                5c109a07-2bde-4e76-9861-a1afba76db05
                © The Author(s) 2015

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 3.0 License ( http://www.creativecommons.org/licenses/by-nc/3.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page ( http://www.uk.sagepub.com/aboutus/openaccess.htm).

                History
                Categories
                Review Article

                Anesthesiology & Pain management
                family carers,review,palliative care,end of life care,terminal care,caregivers,home

                Comments

                Comment on this article