Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic
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 condition...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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Cambridge University Press
2020-11-01
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| Series: | BJPsych Open |
| Subjects: | |
| Online Access: | https://www.cambridge.org/core/product/identifier/S2056472420001222/type/journal_article |
| _version_ | 1811157058463989760 |
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| author | Sam Tromans Michael Kinney Verity Chester Regi Alexander Ashok Roy Josemir W. Sander Harry Dudson Rohit Shankar |
| author_facet | Sam Tromans Michael Kinney Verity Chester Regi Alexander Ashok Roy Josemir W. Sander Harry Dudson Rohit Shankar |
| author_sort | Sam Tromans |
| collection | DOAJ |
| description |
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.
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| first_indexed | 2024-04-10T04:59:47Z |
| format | Article |
| id | doaj.art-fa9ca5be2e794f92afcc06131bbe3dc1 |
| institution | Directory Open Access Journal |
| issn | 2056-4724 |
| language | English |
| last_indexed | 2024-04-10T04:59:47Z |
| publishDate | 2020-11-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | BJPsych Open |
| spelling | doaj.art-fa9ca5be2e794f92afcc06131bbe3dc12023-03-09T12:29:04ZengCambridge University PressBJPsych Open2056-47242020-11-01610.1192/bjo.2020.122Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemicSam Tromans0Michael Kinney1Verity Chester2Regi Alexander3https://orcid.org/0000-0002-3554-2948Ashok Roy4https://orcid.org/0000-0002-8432-981XJosemir W. Sander5Harry Dudson6Rohit Shankar7https://orcid.org/0000-0002-1183-6933Leicestershire Partnership NHS Trust, UK; and Department of Health Sciences, University of Leicester, UKBelfast Health and Social Care Trust, UKHertfordshire Partnership University NHS Foundation Trust, UK; and Norwich Medical School, University of East Anglia, UKHertfordshire Partnership University NHS Foundation Trust, UK; and University of Hertfordshire, UKCoventry and Warwickshire Partnership NHS Trust, UK; and University of Warwick, UKUCL Queen Square Institute of Neurology, UK; Chalfont Centre for Epilepsy, UK; and Stichting Epilepsie Instellingen Nederland (SEIN), the NetherlandsDepartment of Health Sciences, University of Leicester, UKCornwall Partnership NHS Foundation Trust, UK; and University of Exeter Medical School, Truro, UK 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. https://www.cambridge.org/core/product/identifier/S2056472420001222/type/journal_articleCOVID-19intellectual disabilitydevelopmental disabilityautism |
| spellingShingle | Sam Tromans Michael Kinney Verity Chester Regi Alexander Ashok Roy Josemir W. Sander Harry Dudson Rohit Shankar Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic BJPsych Open COVID-19 intellectual disability developmental disability autism |
| title | Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic |
| title_full | Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic |
| title_fullStr | Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic |
| title_full_unstemmed | Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic |
| title_short | Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic |
| title_sort | priority concerns for people with intellectual and developmental disabilities during the covid 19 pandemic |
| topic | COVID-19 intellectual disability developmental disability autism |
| url | https://www.cambridge.org/core/product/identifier/S2056472420001222/type/journal_article |
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