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Social exclusion in adult informal carers: A systematic narrative review of the experiences of informal carers of people with dementia and mental illness.

Greenwood, N; Mezey, GC; Smith, R (2018) Social exclusion in adult informal carers: A systematic narrative review of the experiences of informal carers of people with dementia and mental illness. Maturitas, 112. pp. 39-45. ISSN 1873-4111 https://doi.org/10.1016/j.maturitas.2018.03.011
SGUL Authors: Mezey, Gillian Clare

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Abstract

Social exclusion has a negative impact on quality of life. People living with dementia or mental health disorders as well as informal carers have been separately described as socially excluded. The objective of this systematic narrative review was to examine the extent to which social exclusion experienced by adult informal carers of people living with dementia or severe mental health disorders has been identified and described in research literature. It synthesised qualitative and quantitative evidence and included the perspectives of carers themselves and of professionals. Eight electronic databases (1997–2017) were searched. Five relevant studies published between 2010 and 2016 were identified. All were qualitative and used interviews and focus groups. Study quality was variable and most were European. Two focused on carers of people living with dementia and three on carers of people with mental health disorders. Four investigated carers’ perspectives and experiences of social exclusion directly (total of 137 carer participants, predominantly parents, spouses and adult children), while the fifth focused on the perceptions of 65 participants working in health and social care. Stigma, financial difficulties and social isolation were highlighted in four studies and the challenges for carers in engaging in leisure activities were described in the fifth. Most conceptualised social exclusion as a form of stigma, or as resulting from stigma. One presented social exclusion as an element of carer burden. Two explicitly discussed the negative effects of social exclusion on carers. The dearth of research and the lack of specificity about social exclusion in carers was surprising. Future research should investigate aspects of social exclusion that may adversely affect carer well-being.

Item Type: Article
Additional Information: © 2018 The Authors. Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/BY-NC-ND/4.0/).
Keywords: 1103 Clinical Sciences, 1114 Paediatrics And Reproductive Medicine
SGUL Research Institute / Research Centre: Academic Structure > Population Health Research Institute (INPH)
Journal or Publication Title: Maturitas
ISSN: 1873-4111
Dates:
DateEvent
June 2018Published
29 March 2018Published Online
28 March 2018Accepted
Publisher License: Creative Commons: Attribution-Noncommercial-No Derivative Works 4.0
URI: https://openaccess.sgul.ac.uk/id/eprint/109724
Publisher's version: https://doi.org/10.1016/j.maturitas.2018.03.011

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