Parent carer and disabled young people’s perspectives on the impacts of changes to service provision for children and young people in England during the COVID-19 pandemic: a qualitative study
Objectives In England, the delivery of health, education and social care services changed substantially during COVID-19. Some services closed, some had reduced capacity and there was a shift to the use of telehealth. This study aimed to understand how families of children and young people with neuro...
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BMJ Publishing Group
2024-11-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/14/11/e085144.full |
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| author | Lindsay Pennington Catherine Exley Dawn Teare Jeremy R Parr Christopher Morris Shona Haining Ge Yu Amanda Allard Philip Heslop Sara Carr Hannah Merrick Helen Driver Lily Potts Vicki Grahame Lesley Platts Kulwinder Bola |
| author_facet | Lindsay Pennington Catherine Exley Dawn Teare Jeremy R Parr Christopher Morris Shona Haining Ge Yu Amanda Allard Philip Heslop Sara Carr Hannah Merrick Helen Driver Lily Potts Vicki Grahame Lesley Platts Kulwinder Bola |
| author_sort | Lindsay Pennington |
| collection | DOAJ |
| description | Objectives In England, the delivery of health, education and social care services changed substantially during COVID-19. Some services closed, some had reduced capacity and there was a shift to the use of telehealth. This study aimed to understand how families of children and young people with neurodisability experienced these service changes, what did or did not work well for them and what impact the service changes had on them.Design Qualitative study with parent carers of children (aged 0–19 years) with neurodisability accessing children’s health, social care and education-based services during the COVID-19 pandemic.Setting Participants were recruited from five local authority areas in England and interviewed via telephone and/or video call.Participants 48 parent carers (45 mothers, three fathers) were interviewed and nine young people (aged 8–16 years). Across the parent carers there were 55 children with neurodisability (43 males, 12 females), ranging from 3 to 19 years. Children had a range of diagnoses, including autism, attention deficit hyperactivity disorder, cerebral palsy, genetic conditions and epilepsy. Nine young people (aged 8–16 years; eight males, one female) were interviewed; two individually, three in a focus group and four with their parent carer.Results Four themes were identified: (1) communication of service changes, (2) access to services during the pandemic, (3) impacts of service changes and (4) learning for future emergencies and resetting services. Communication of service changes was reported as poor and confusing. Access to services during the pandemic varied. Medical services continued with least disruption; therapeutic, education-based and social care services were severely disrupted. Service changes had a detrimental impact on families coping with high levels of medical care and physical and behavioural support. Young people experienced negative impacts of service change on their physical, mental and behavioural health.Conclusions Services for children with neurodisability require a person-led, family centred approach with strong multidisciplinary team working. Findings indicated the need for improved communication within and between services, and between services and families and young people. Planning for future emergencies needs to factor in the specific health and care needs of children with neurodisability and maintain access to services, in particular, those accessed through schools. |
| format | Article |
| id | doaj-art-54c2b1ec68384e19b52a1833164fc5d9 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2024-11-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-54c2b1ec68384e19b52a1833164fc5d92024-12-13T10:15:09ZengBMJ Publishing GroupBMJ Open2044-60552024-11-01141110.1136/bmjopen-2024-085144Parent carer and disabled young people’s perspectives on the impacts of changes to service provision for children and young people in England during the COVID-19 pandemic: a qualitative studyLindsay Pennington0Catherine Exley1Dawn TeareJeremy R Parr2Christopher Morris3Shona HainingGe YuAmanda Allard4Philip HeslopSara CarrHannah Merrick5Helen Driver6Lily Potts7Vicki GrahameLesley PlattsKulwinder Bola6 Great North Children`s Hospital, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK1 Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK1 Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK4 Peninsula Childhood Disability Research Unit (PenCRU), University of Exeter Medical School, University of Exeter, Exeter, UK3 Council for Disabled Children, National Children`s Bureau, London, UK1 Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK1 Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK2 Newcastle University School of Psychology, Newcastle upon Tyne, UKObjectives In England, the delivery of health, education and social care services changed substantially during COVID-19. Some services closed, some had reduced capacity and there was a shift to the use of telehealth. This study aimed to understand how families of children and young people with neurodisability experienced these service changes, what did or did not work well for them and what impact the service changes had on them.Design Qualitative study with parent carers of children (aged 0–19 years) with neurodisability accessing children’s health, social care and education-based services during the COVID-19 pandemic.Setting Participants were recruited from five local authority areas in England and interviewed via telephone and/or video call.Participants 48 parent carers (45 mothers, three fathers) were interviewed and nine young people (aged 8–16 years). Across the parent carers there were 55 children with neurodisability (43 males, 12 females), ranging from 3 to 19 years. Children had a range of diagnoses, including autism, attention deficit hyperactivity disorder, cerebral palsy, genetic conditions and epilepsy. Nine young people (aged 8–16 years; eight males, one female) were interviewed; two individually, three in a focus group and four with their parent carer.Results Four themes were identified: (1) communication of service changes, (2) access to services during the pandemic, (3) impacts of service changes and (4) learning for future emergencies and resetting services. Communication of service changes was reported as poor and confusing. Access to services during the pandemic varied. Medical services continued with least disruption; therapeutic, education-based and social care services were severely disrupted. Service changes had a detrimental impact on families coping with high levels of medical care and physical and behavioural support. Young people experienced negative impacts of service change on their physical, mental and behavioural health.Conclusions Services for children with neurodisability require a person-led, family centred approach with strong multidisciplinary team working. Findings indicated the need for improved communication within and between services, and between services and families and young people. Planning for future emergencies needs to factor in the specific health and care needs of children with neurodisability and maintain access to services, in particular, those accessed through schools.https://bmjopen.bmj.com/content/14/11/e085144.full |
| spellingShingle | Lindsay Pennington Catherine Exley Dawn Teare Jeremy R Parr Christopher Morris Shona Haining Ge Yu Amanda Allard Philip Heslop Sara Carr Hannah Merrick Helen Driver Lily Potts Vicki Grahame Lesley Platts Kulwinder Bola Parent carer and disabled young people’s perspectives on the impacts of changes to service provision for children and young people in England during the COVID-19 pandemic: a qualitative study BMJ Open |
| title | Parent carer and disabled young people’s perspectives on the impacts of changes to service provision for children and young people in England during the COVID-19 pandemic: a qualitative study |
| title_full | Parent carer and disabled young people’s perspectives on the impacts of changes to service provision for children and young people in England during the COVID-19 pandemic: a qualitative study |
| title_fullStr | Parent carer and disabled young people’s perspectives on the impacts of changes to service provision for children and young people in England during the COVID-19 pandemic: a qualitative study |
| title_full_unstemmed | Parent carer and disabled young people’s perspectives on the impacts of changes to service provision for children and young people in England during the COVID-19 pandemic: a qualitative study |
| title_short | Parent carer and disabled young people’s perspectives on the impacts of changes to service provision for children and young people in England during the COVID-19 pandemic: a qualitative study |
| title_sort | parent carer and disabled young people s perspectives on the impacts of changes to service provision for children and young people in england during the covid 19 pandemic a qualitative study |
| url | https://bmjopen.bmj.com/content/14/11/e085144.full |
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