title: Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring.
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.
authors.affiliation: Centre for Educational Development, Appraisal and Research (CEDAR), University of Warwick, Coventry, UK.
authors.forename: Vasiliki
authors.initials: V
authors.lastname: Totsika
authors.affiliation: Centre for Educational Development, Appraisal and Research (CEDAR), University of Warwick, Coventry, UK.
authors.forename: Richard P
authors.initials: RP
authors.lastname: Hastings
authors.affiliation: Institute of Health and Biomedical Innovation, Queensland Institute of Technology, Brisbane, Queensland, Australia.
authors.forename: Dimitrios
authors.initials: D
authors.lastname: Vagenas
mesh_terms: D000328:Adult; D017028:Caregivers / Q000523:psychology*; D004739:England; D005260:Female; D006304:Health Status; D006801:Humans; D008607:Intellectual Disability; D008297:Male; D011788:Quality of Life; D011795:Surveys and Questionnaires
keywords: health; impact of caregiving; informal carers; intellectual disability; quality of life