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.
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.
Involvement in supportive and palliative care research is valued by people with a cancer diagnosis, but there are ongoing issues of emotional support and good communication through the use of appropriate language in documentation.
Prison populations across the world are increasing. In the United Kingdom, numbers have doubled in the last two decades, and older prisoners now constitute the fastest growing section of the prison population. One key reason for this shifting prisoner demographic is the growing numbers of men convicted of 'historic' sexual offences, many of whom are imprisoned for the first time in old age, and housed in prisons not suited to their needs. These demographic changes have profound consequences, including increased demand for health and social care in prison, and rising numbers of anticipated deaths in custody. Using the findings from a recently completed study of palliative care in prison, this paper proposes that older prisoners face a 'double burden' when incarcerated. This double burden means that as well as being deprived of their liberty, older people experience additional suffering by not having their health and wellbeing needs met. For some, this double burden includes a 'de facto life sentence', whereby because of their advanced age and the likelihood that they will die in prison, they effectively receive a life sentence for a crime that would not normally carry a life sentence. There has been little popular or academic debate concerning the ethical and justice questions that this double burden raises. Drawing on the work of Wacquant and others, the paper proposes that these changes are best understood as unplanned but reasonably foreseeable consequences of neoliberal penal policies. Although the paper focuses on the UK (which by comparison with other European countries has high rates of imprisonment), many of the challenges discussed are emerging in other countries across the world. This paper illustrates starkly how neoliberal policies and discourses have shaped the expansion and composition of the prison population with its consequent implications for health and justice.
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