The experiences of mothers of children and young people with intellectual disabilities during the first COVID-19 lockdown period

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

doi:10.1111/jar.12884

The experiences of mothers of children and young people with intellectual disabilities during the first COVID-19 lockdown period

J Appl Res Intellect Disabil. 2021 Nov;34(6):1421-1430. doi: 10.1111/jar.12884. Epub 2021 Mar 23.

Authors

Gemma Rogers^{1

2}, Gisela Perez-Olivas³, Biza Stenfert Kroese⁴, Varsha Patel⁵, Glynis Murphy⁶, John Rose⁴, Vivien Cooper⁷, Peter E Langdon^{8

9

10}, Steve Hiles¹¹, Clair Clifford, Paul Willner¹¹

Affiliations

¹ The Tarentfort Centre, Kent and Medway NHS and Social Care Partnership Trust, Dartford, UK.
² Division of Psychiatry, University College London, London, UK.
³ Hertfordshire Partnership University NHS Foundation Trust, St Albans, UK.
⁴ School of Psychology, University of Birmingham, Birmingham, UK.
⁵ Birmingham Community Healthcare NHS Foundation Trust, Birmingham, UK.
⁶ Tizard Centre, University of Kent, Canterbury, UK.
⁷ Challenging Behaviour Foundation, Chatham, UK.
⁸ Centre for Educational Development, Appraisal and Research, University of Warwick, Coventry, UK.
⁹ Centre for Mental Health and Wellbeing Research, Warwick Medical School, University of Warwick, Coventry, UK.
¹⁰ Coventry and Warwickshire Partnership NHS Trust, Coventry, UK.
¹¹ Swansea Trials Unit, Clinical Research Facility, Institute of Life Science, Swansea University, Swansea, UK.

Abstract

Background: Recent COVID-19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers.

Aim: The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period.

Methods: Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis.

Results: Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future.

Conclusions: All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well-being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.

Keywords: Covid-19; caring responsibility; children; intellectual disabilities; mothers; young people.

MeSH terms

Adolescent
COVID-19*
Child
Communicable Disease Control
Female
Humans
Intellectual Disability*
Mothers
SARS-CoV-2