‘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
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 IM...
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| Format: | Article |
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BMJ Publishing Group
2021-09-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/11/9/e049386.full |
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| author | 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 |
| author_facet | 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 |
| author_sort | Diana Baralle |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-6e3c9d93947f4c879e95fa8e598ed6e2 |
| institution | OA Journals |
| issn | 2044-6055 |
| language | English |
| publishDate | 2021-09-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-6e3c9d93947f4c879e95fa8e598ed6e22025-08-20T02:18:34ZengBMJ Publishing GroupBMJ Open2044-60552021-09-0111910.1136/bmjopen-2021-049386‘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 UKDiana Baralle0Susan Walker1Ramya Srinivasan2Sarah Davies3Shelagh Joss4Jonathan Berg5Miranda Splitt6Usha Kini7Pradeep VasudevanJohn Dean8William NewmanYanick Crow9Beverly SearleJulian BarwellLyn ChittyPeter Holmans10Sarah LawVirginia ClowesRachel HarrisonMuriel HolderSahar Mansour11Spiros Denaxas12Ellie KerryFrances FlinterZheng Ye13Julia Rankin14Oliver QuarrellNicola LewisAnne LampeAstrid WeberDavid Skuse15Kate Baker16Annie ProcterJeremy Hall17Alison KrausNeil Walker18Jeanne Wolstencroft19Laura Hull20Lauren Warner21Tooba Nadeem Akhtar22William Mandy23Eleanor DewhurstAmy LafontF Lucy RaymondTerry ShirleyHayley TilleyHusne TimurCatherine TittertonSarah WallworkFrancesca WicksMarie ErwoodSophie AndrewsPhilippa BirchSamantha BowenKaren BradleyAimee ChallengerSamuel ChawnerAndrew CuthbertSinead MorrisonHayley MossMichael OwenSinead RayMatthew Sopp24Molly TongMarianne van den BreeNadia Coscini25Hayley DenyerNasrtullah FatihManoj JujAnna LucockFrida PrintzlauAlice WatkinsAnna PellingLisa RobertsonDenise Williams AlanDonaldson LucyFleur van DijkHuman Genetic and Genomics, University of Southampton, Southampton, UKGenomics England Limited, London, UKDepartment of Radiology and Biomedical Imaging, University of California-San Francisco, San Francisco, California, USABetsi Cadwaladr University Health Board, Bangor, UK2 West of Scotland Genetics Service, Queen Elizabeth University Hospital, Glasgow, UKDepartment of Circulation and Medical Imaging, Norwegian University of Science and Technology, Trondheim, NorwayNorthern Genetics Service, Institute of Genetic Medicine, Newcastle, UKOxford Centre for Genomic Medicine, Oxford University Hospitals NHS Foundation Trust, Oxford, UKclinical vice president1Imagine Institute, Laboratory of Neurogenetics and Neuroinflammation, Paris, France5Division of Psychological Medicine and Clinical Neurosciences, Cardiff University, Cardiff, UK13 Lymphovascular Research Unit, Molecular and Clinical Sciences Research Institute, St George`s Hospital, University of London, London, UKInstitute of Health Informatics, University College London, London, UKinvestigator scientistSouth West Genomic Medicine Service, England, UK1 BRC Great Ormond Street Institute of Child Health, University College London, London, UKMRC Cognition and Brain Sciences Unit, University of Cambridge, Cambridge, UKMRC Centre for Neuropsychiatric Genetics and Genomics, Division of Psychological Medicine and Clinical Neurosciences, School of Medicine, Cardiff University, Cardiff, UK5 Wolfson Institute of Population Health, Faculty of Medicine and Dentistry, Queen Mary University of London, London, UK1 BRC Great Ormond Street Institute of Child Health, University College London, London, UKDivision of Psychology and Language Sciences, University College London, London, EnglandThe Great Ormond Street Institute of Child Health, University College London, London, EnglandThe Great Ormond Street Institute of Child Health, University College London, London, England2 Psychology and Language Sciences, University College London, London, UKPsychology Department, University of Southampton, Southampton, UK1 Centre for Community Child Health, The Royal Children`s Hospital Melbourne, Parkville, Victoria, AustraliaObjectives 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.https://bmjopen.bmj.com/content/11/9/e049386.full |
| spellingShingle | 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 ‘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 BMJ Open |
| title | ‘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 |
| title_full | ‘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 |
| title_fullStr | ‘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 |
| title_full_unstemmed | ‘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 |
| title_short | ‘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 |
| title_sort | 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 |
| url | https://bmjopen.bmj.com/content/11/9/e049386.full |
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