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

Totsika, V; Hastings, RP; Vagenas, D; (2016) 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. 10.1111/hsc.12393. Green open access

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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. Informal carers of people with intellectual disability (N = 260) were identified among 2199 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 intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care‐giving. 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 intellectual disability 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 intellectual disability was not supported by these English population‐representative data. Poverty and long care‐giving hours may make caregivers more susceptible to negative well‐being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.

Type: Article
Title: Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring
Open access status: An open access version is available from UCL Discovery
DOI: 10.1111/hsc.12393
Publisher version: https://doi.org/10.1111/hsc.12393
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Science & Technology, Social Sciences, Life Sciences & Biomedicine, Public, Environmental & Occupational Health, Social Work, health, impact of caregiving, informal carers, intellectual disability, quality of life, MATERNAL MENTAL-HEALTH, DEVELOPMENTAL-DISABILITIES, CHILDREN, METAANALYSIS, REAPPRAISAL, DEPRESSION, FAMILIES, BEHAVIOR, POVERTY, MOTHERS
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
URI: https://discovery.ucl.ac.uk/id/eprint/10057553
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