The experiences of carers of adults with intellectual disabilities during the first COVID-19 lockdown period

Varsha Patel; Gisela Perez-Olivas; Biza Stenfert Kroese; Gemma Rogers; John Rose; Glynis Murphy; Vivien Cooper; Peter E. Langdon; Steve Hiles; Clair Clifford; Paul Willner

doi:10.1111/jppi.12382

The experiences of carers of adults with intellectual disabilities during the first COVID-19 lockdown period

Varsha Patel, Gisela Perez-Olivas, Biza Stenfert Kroese, Gemma Rogers, John Rose, Glynis Murphy, Vivien Cooper, Peter E. Langdon, Steve Hiles, Clair Clifford, Paul Willner

Norwich Medical School

Research output: Contribution to journal › Article › peer-review

26 Citations (Scopus)

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Abstract

Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers.

Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the first 2020 lockdown period.

Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis.

Results: Four main themes were identified: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being.

Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.

Original language	English
Pages (from-to)	254-262
Number of pages	9
Journal	Journal of Policy and Practice in Intellectual Disabilities
Volume	18
Issue number	4
Early online date	15 May 2021
DOIs	https://doi.org/10.1111/jppi.12382
Publication status	Published - Dec 2021

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Patel, V., Perez-Olivas, G., Kroese, B. S., Rogers, G., Rose, J., Murphy, G., Cooper, V., Langdon, P. E., Hiles, S., Clifford, C., & Willner, P. (2021). The experiences of carers of adults with intellectual disabilities during the first COVID-19 lockdown period. Journal of Policy and Practice in Intellectual Disabilities, 18(4), 254-262. https://doi.org/10.1111/jppi.12382

@article{64b882021bf34208a9da6faec491c61b,

title = "The experiences of carers of adults with intellectual disabilities during the first COVID-19 lockdown period",

abstract = "Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers. Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the first 2020 lockdown period. Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results: Four main themes were identified: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being. Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.",

author = "Varsha Patel and Gisela Perez-Olivas and Kroese, {Biza Stenfert} and Gemma Rogers and John Rose and Glynis Murphy and Vivien Cooper and Langdon, {Peter E.} and Steve Hiles and Clair Clifford and Paul Willner",

year = "2021",

month = dec,

doi = "10.1111/jppi.12382",

language = "English",

volume = "18",

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Patel, V, Perez-Olivas, G, Kroese, BS, Rogers, G, Rose, J, Murphy, G, Cooper, V, Langdon, PE, Hiles, S, Clifford, C & Willner, P 2021, 'The experiences of carers of adults with intellectual disabilities during the first COVID-19 lockdown period', Journal of Policy and Practice in Intellectual Disabilities, vol. 18, no. 4, pp. 254-262. https://doi.org/10.1111/jppi.12382

TY - JOUR

T1 - The experiences of carers of adults with intellectual disabilities during the first COVID-19 lockdown period

AU - Patel, Varsha

AU - Perez-Olivas, Gisela

AU - Kroese, Biza Stenfert

AU - Rogers, Gemma

AU - Rose, John

AU - Murphy, Glynis

AU - Cooper, Vivien

AU - Langdon, Peter E.

AU - Hiles, Steve

AU - Clifford, Clair

AU - Willner, Paul

PY - 2021/12

Y1 - 2021/12

N2 - Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers. Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the first 2020 lockdown period. Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results: Four main themes were identified: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being. Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.

AB - Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers. Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the first 2020 lockdown period. Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results: Four main themes were identified: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being. Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.

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JO - Journal of Policy and Practice in Intellectual Disabilities

JF - Journal of Policy and Practice in Intellectual Disabilities

SN - 1741-1122

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The experiences of carers of adults with intellectual disabilities during the first COVID-19 lockdown period

Abstract

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