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

J Policy Pract Intellect Disabil. 2021 Dec;18(4):254-262. doi: 10.1111/jppi.12382. Epub 2021 May 15.

Authors

Varsha Patel¹, Gisela Perez-Olivas², Biza Stenfert Kroese³, Gemma Rogers^{4

5}, John Rose³, Glynis Murphy⁶, Vivien Cooper⁷, Peter E Langdon^{8

9

10}, Steve Hiles¹¹, Clair Clifford^{1

2

3

4

5

6

7

8

9

10

11}, Paul Willner¹¹

Affiliations

¹ Birmingham Community Healthcare NHS Foundation Trust Unit 3 Priestley Wharf, Holt Street Birmingham B7 4BN UK.
² Hertfordshire Partnership University NHS Foundation Trust 99 Waverley Road, St Albans Hertfordshire AL3 5TQ UK.
³ University of Birmingham, School of Psychology Edgbaston Birmingham B15 2TT UK.
⁴ Kent and Medway NHS and Social Care Partnership Trust, The Tarentfort Centre Bow Arrow Lane, Dartford Kent DA2 6PB UK.
⁵ Division of Psychiatry University College London Maple House, 149 Tottenham Court Road London W1T 7BN UK.
⁶ University of Kent Tizard Centre, Cornwallis North East Canterbury Kent CT2 7NF UK.
⁷ Challenging Behaviour Foundation, The Old Courthouse New Road Avenue, Chatham Kent ME4 6BE UK.
⁸ Centre for Educational Development, Appraisal and Research University of Warwick Coventry CV4 7AL UK.
⁹ Centre for Mental Health and Wellbeing Research, Warwick Medical School University of Warwick Coventry CV4 7AL UK.
¹⁰ Coventry and Warwickshire Partnership NHS Trust, Wayside House Wilsons Lane Coventry CV6 6NY UK.
¹¹ Swansea Trials Unit, Clinical Research Facility, Institute of Life Science, Swansea University Swansea SA2 8PP UK.

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.

Keywords: COVID‐19; carers; intellectual disability; lockdown; parents.

© 2021 The Authors. Journal of Policy and Practice in Intellectual Disabilities published by International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals LLC.