BMJ Open (Sep 2021)
‘We have been in lockdown since he was born’: a mixed methods exploration of the experiences of families caring for children with intellectual disability during the COVID-19 pandemic in the UK
- Diana Baralle,
- Susan Walker,
- Ramya Srinivasan,
- Sarah Davies,
- Shelagh Joss,
- Jonathan Berg,
- Miranda Splitt,
- Usha Kini,
- Pradeep Vasudevan,
- John Dean,
- William Newman,
- Yanick Crow,
- Beverly Searle,
- Julian Barwell,
- Lyn Chitty,
- Peter Holmans,
- Sarah Law,
- Virginia Clowes,
- Rachel Harrison,
- Muriel Holder,
- Sahar Mansour,
- Spiros Denaxas,
- Ellie Kerry,
- Frances Flinter,
- Zheng Ye,
- Julia Rankin,
- Oliver Quarrell,
- Nicola Lewis,
- Anne Lampe,
- Astrid Weber,
- David Skuse,
- Kate Baker,
- Annie Procter,
- Jeremy Hall,
- Alison Kraus,
- Neil Walker,
- Jeanne Wolstencroft,
- Laura Hull,
- Lauren Warner,
- Tooba Nadeem Akhtar,
- William Mandy,
- Eleanor Dewhurst,
- Amy Lafont,
- F Lucy Raymond,
- Terry Shirley,
- Hayley Tilley,
- Husne Timur,
- Catherine Titterton,
- Sarah Wallwork,
- Francesca Wicks,
- Marie Erwood,
- Sophie Andrews,
- Philippa Birch,
- Samantha Bowen,
- Karen Bradley,
- Aimee Challenger,
- Samuel Chawner,
- Andrew Cuthbert,
- Sinead Morrison,
- Hayley Moss,
- Michael Owen,
- Sinead Ray,
- Matthew Sopp,
- Molly Tong,
- Marianne van den Bree,
- Nadia Coscini,
- Hayley Denyer,
- Nasrtullah Fatih,
- Manoj Juj,
- Anna Lucock,
- Frida Printzlau,
- Alice Watkins,
- Anna Pelling,
- Lisa Robertson,
- Denise Williams Alan,
- Donaldson Lucy,
- Fleur van Dijk
Affiliations
- Diana Baralle
- Human Genetic and Genomics, University of Southampton, Southampton, UK
- Susan Walker
- Genomics England Limited, London, UK
- Ramya Srinivasan
- Department of Radiology and Biomedical Imaging, University of California-San Francisco, San Francisco, California, USA
- Sarah Davies
- Betsi Cadwaladr University Health Board, Bangor, UK
- Shelagh Joss
- 2 West of Scotland Genetics Service, Queen Elizabeth University Hospital, Glasgow, UK
- Jonathan Berg
- Department of Circulation and Medical Imaging, Norwegian University of Science and Technology, Trondheim, Norway
- Miranda Splitt
- Northern Genetics Service, Institute of Genetic Medicine, Newcastle, UK
- Usha Kini
- Oxford Centre for Genomic Medicine, Oxford University Hospitals NHS Foundation Trust, Oxford, UK
- Pradeep Vasudevan
- John Dean
- clinical vice president
- William Newman
- Yanick Crow
- 1Imagine Institute, Laboratory of Neurogenetics and Neuroinflammation, Paris, France
- Beverly Searle
- Julian Barwell
- Lyn Chitty
- Peter Holmans
- 5Division of Psychological Medicine and Clinical Neurosciences, Cardiff University, Cardiff, UK
- Sarah Law
- Virginia Clowes
- Rachel Harrison
- Muriel Holder
- Sahar Mansour
- 13 Lymphovascular Research Unit, Molecular and Clinical Sciences Research Institute, St George`s Hospital, University of London, London, UK
- Spiros Denaxas
- Institute of Health Informatics, University College London, London, UK
- Ellie Kerry
- Frances Flinter
- Zheng Ye
- investigator scientist
- Julia Rankin
- South West Genomic Medicine Service, England, UK
- Oliver Quarrell
- Nicola Lewis
- Anne Lampe
- Astrid Weber
- David Skuse
- 1 BRC Great Ormond Street Institute of Child Health, University College London, London, UK
- Kate Baker
- MRC Cognition and Brain Sciences Unit, University of Cambridge, Cambridge, UK
- Annie Procter
- Jeremy Hall
- MRC Centre for Neuropsychiatric Genetics and Genomics, Division of Psychological Medicine and Clinical Neurosciences, School of Medicine, Cardiff University, Cardiff, UK
- Alison Kraus
- Neil Walker
- 5 Wolfson Institute of Population Health, Faculty of Medicine and Dentistry, Queen Mary University of London, London, UK
- Jeanne Wolstencroft
- 1 BRC Great Ormond Street Institute of Child Health, University College London, London, UK
- Laura Hull
- Division of Psychology and Language Sciences, University College London, London, England
- Lauren Warner
- The Great Ormond Street Institute of Child Health, University College London, London, England
- Tooba Nadeem Akhtar
- The Great Ormond Street Institute of Child Health, University College London, London, England
- William Mandy
- 2 Psychology and Language Sciences, University College London, London, UK
- Eleanor Dewhurst
- Amy Lafont
- F Lucy Raymond
- Terry Shirley
- Hayley Tilley
- Husne Timur
- Catherine Titterton
- Sarah Wallwork
- Francesca Wicks
- Marie Erwood
- Sophie Andrews
- Philippa Birch
- Samantha Bowen
- Karen Bradley
- Aimee Challenger
- Samuel Chawner
- Andrew Cuthbert
- Sinead Morrison
- Hayley Moss
- Michael Owen
- Sinead Ray
- Matthew Sopp
- Psychology Department, University of Southampton, Southampton, UK
- Molly Tong
- Marianne van den Bree
- Nadia Coscini
- 1 Centre for Community Child Health, The Royal Children`s Hospital Melbourne, Parkville, Victoria, Australia
- Hayley Denyer
- Nasrtullah Fatih
- Manoj Juj
- Anna Lucock
- Frida Printzlau
- Alice Watkins
- Anna Pelling
- Lisa Robertson
- Denise Williams Alan
- Donaldson Lucy
- Fleur van Dijk
- DOI
- https://doi.org/10.1136/bmjopen-2021-049386
- Journal volume & issue
-
Vol. 11,
no. 9
Abstract
Objectives This study aimed to explore the experiences of parents caring for children with intellectual and developmental disabilities (IDD) during the UK national lockdown in spring 2020, resulting from the COVID-19 pandemic.Design Participants were identified using opportunity sampling from the IMAGINE-ID national (UK) cohort and completed an online survey followed by a semistructured interview. Interviews were analysed using thematic analysis.Setting Interviews were conducted over the telephone in July 2020 as the first UK lockdown was ending.Participants 23 mothers of children with intellectual and developmental disabilities aged 5–15 years were recruited.Results Themes reported by parents included: managing pre-existing challenges during a time of extreme change, having mixed emotions about the benefits and difficulties that arose during the lockdown and the need for appropriate, individualised support.Conclusions Our findings confirm observations previously found in UK parents of children with IDD and provide new insights on the use of technology during the pandemic for schooling and healthcare, as well as the need for regular check-ins.
