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Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic

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journal contribution
posted on 03.09.2021, 10:54 by Sam Tromans, Michael Kinney, Verity Chester, Regi Alexander, Ashok Roy, Josemir W Sander, Harry Dudson, Rohit Shankar

Background

The approach taken to support individuals during the coronavirus disease 2019 (COVID-19) pandemic needs to take into account the requirements of people with intellectual disabilities and/or autism, who represent a major vulnerable group, with higher rates of co-occurring health conditions and a greater risk of dying prematurely. To date, little evidence on COVID-related concerns have been produced and no report has provided structured feedback from the point of view of people with intellectual disabilities and/or autism or of their family/carers.

Aims

To provide systemised evidence-based information of the priority concerns for people with intellectual disabilities and/or autism regarding the COVID-19 pandemic.

Method

Senior representatives of major UK-based professional and service-user representative organisations with a stake in the care of people with intellectual disabilities and/or autism were contacted to provide a list of concerns across three domains: 'mental health and challenging behaviour', 'physical health and epilepsy' and 'social circumstances and support'. The feedback was developed into statements on frequently reported priorities. These statements were then rated independently by expert clinicians. A video-conference meeting to reconcile outliers and to generate a consensus statement list was held.

Results

Thirty-two organisations were contacted, of which 26 (81%) replied. From the respondent's data, 30 draft consensus statements were generated. Following expert clinician review, there was initially strong consensus for seven statements (23%), increasing to 27 statements (90%) following video conferencing.

Conclusions

These recommendations highlight the expectations of people with intellectual disabilities and/or autism in the current pandemic. This could support policymakers and professionals' deliver and evidence person-centred care.

History

Citation

BJPsych Open(2020), 6, e128, 1–6. doi: 10.1192/bjo.2020.122

Author affiliation

Department of Health Sciences, University of Leicester

Version

VoR (Version of Record)

Published in

BJPSYCH OPEN

Volume

6

Issue

6

Publisher

Cambridge University Press (CUP)

issn

2056-4724

eissn

2056-4724

Copyright date

2020

Available date

03/09/2021

Spatial coverage

England

Language

English