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Informal caregivers of people with an intellectual disability in England : health, quality of life, and impact of caring

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Totsika, Vasiliki, Hastings, Richard P. and Vagenas, Dimitrios (2017) Informal caregivers of people with an intellectual disability in England : health, quality of life, and impact of caring. Health & Social Care in the Community, 25 (3). pp. 951-961. doi:10.1111/hsc.12393

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Official URL: http://doi.org/10.1111/hsc.12393

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Abstract

There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life, and impact of caring of informal caregivers of people with an intellectual disability (ID). Informal carers of people with ID (N=260) were identified among 2,199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with ID was not associated with reduced quality of life. There was a 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to caregiving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with ID were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with ID was not supported by these English population-representative data. Poverty and long caregiving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with ID should focus on alleviating those two factors.

Item Type: Journal Article
Subjects: B Philosophy. Psychology. Religion > BF Psychology
H Social Sciences > HN Social history and conditions. Social problems. Social reform
H Social Sciences > HV Social pathology. Social and public welfare
R Medicine > RC Internal medicine
Divisions: Faculty of Social Sciences > Centre for Educational Development, Appraisal and Research (CEDAR)
Library of Congress Subject Headings (LCSH): Caregivers , Mental retardation, People with mental disabilities , People with mental disabilities--Home care, Caregivers--Health, Quality of life, Caregivers--Mental health, Caregivers--Job stress
Journal or Publication Title: Health & Social Care in the Community
Publisher: Wiley-Blackwell Publishing Ltd.
ISSN: 0966-0410
Official Date: May 2017
Dates:
DateEvent
May 2017Published
22 September 2016Available
25 August 2016Accepted
Volume: 25
Number: 3
Page Range: pp. 951-961
DOI: 10.1111/hsc.12393
Status: Peer Reviewed
Publication Status: Published
Access rights to Published version: Restricted or Subscription Access

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