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The multiplicity of caregiving burden: a qualitative analysis of families with prolonged disorders of consciousness

Objective: To understand the multiple and sometimes conflicting roles substitute decision makers (SDMs) of individuals in a vegetative state (VS), minimally conscious state (MCS), or with locked-in syndrome (LIS) perform while caring for a loved one and the competing priorities derived from these roles. Methods: We conducted semi-structured qualitative interviews using a constructive-grounded theory design. Twelve SDMs, who were also family members for 11 patients, were interviewed at two time points (except one) for a total of 21 in-depth interviews.

Wed, 06/08/2022 - 21:09

Family Caregiving for Older Adults

Family members are the primary source of support for older adults with chronic illness and disability. Thousands of published empirical studies and dozens of reviews have documented the psychological and physical health effects of caregiving, identified caregivers at risk for adverse outcomes, and evaluated a wide range of intervention strategies to support caregivers. Caregiving as chronic stress exposure is the conceptual driver for much of this research. We review and synthesize the literature on the impact of caregiving and intervention strategies for supporting caregivers.

Mon, 02/17/2020 - 10:43

Is it time to create a new nurse role dedicated to helping carers?

Informal carers play a vital role in enabling people with ongoing support needs to be cared for at home, but this has a negative impact on carers' own health and wellbeing. Although community nurses are well placed to identify and support carers, falling numbers of district nurses and the increasing needs of an ageing population mean they have limited time and so focus on patients. This article proposes the creation of a 'carer support nurse' role entirely dedicated to supporting carers.

Wed, 04/10/2019 - 13:32

The cost of unpaid caring

Caring takes time and, as we know, time costs. With an ageing population that is living longer, there is less time and less money to be allocated to older people. This article looks at the role and contribution of informal carers to the social care system, and says that more should be done to recognise their skills and knowledge, and better support should be given to help prevent their ill-health, thus helping to reduce the rising cost of formal care to local social services. 

Thu, 07/20/2017 - 15:24

Drawing the line: the boundaries of volunteering in the community care of older people

Volunteers can play important roles in the provision of support and care to frail or confused older people living in their own homes. There are conflicting expectations as to what these roles should be since there are unclear boundaries with those of paid care and with informal care. The present article explores some of these boundaries, drawing on material from a study of 14 volunteer schemes in England. The aim of the research was to explore the roles played by volunteers in the overall care division of labour.

Thu, 07/20/2017 - 15:21

Changing economic and social roles : the experience of four cohorts of mid-life individuals in Britain, 1985-2000

Men and women in Great Britain are increasingly involved in a variety of economic and social roles, particularly during their mid-life period. This article examines the changes in role occupancy across four birth cohorts passing through mid-life over the period 1985-2000. Data from the General Household Survey is used to investigate the occupancy of four key roles: 'partner', 'parent', 'carer' and 'paid worker', analysing separate and multiple role occupancies and level of commitment to a particular role.

Thu, 07/20/2017 - 15:21

Pause for thought

Carers are often too wrapped up in their duties to think about their needs. This article reports on a pilot project in Kensington and Chelsea, run by charity wpf Counselling and Psychotherapy and funded by the council. The project aimed to offer carers of older people and people with mental health problems counselling to help them gain independence. The article also contains a brief case study.

Thu, 07/20/2017 - 15:19

How pharmacists can support carers

This article describes the range of medication-related activities that are undertaken by carers together with some examples of the types of problems that they experience. This background may assist pharmacists in developing services to support carers in their medicines management roles and thus contribute to government policy as outlined in its strategy for carers. 

Thu, 07/20/2017 - 15:19

The 'Caring in later life' report: a secondary analysis of the 1995 General Household Survey

Caring in Later Life is a review of the needs and roles of older carers (Milne et al, 2001). It brings together a wide‐ranging review of academic and policy literature with an original meta‐analysis of the 1995 General Household Survey (OPCS, 1995). This paper focuses on the findings of the GHS analysis. The picture of older carers that emerges is significantly different from that of carers overall.It is clear that older carers constitute a large and growing number of the carers and represent an increasingly large proportion of the total number of UK carers.

Thu, 07/20/2017 - 15:15

Who cares? Managing obligation and responsibility across the changing landscapes of informal dementia care

This paper explores the different ways in which informal carers for people with dementia negotiate their care-giving role across the changing organisational and spatial landscape of care. In-depth qualitative data are used to argue that the decisions of carers are socially situated and the result of negotiations involving individuals, families and wider cultural expectations. These decisions affect where care occurs.

Thu, 07/20/2017 - 15:13

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