Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK
Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK.
BMJ Open. 2024 Nov 27;14(11):e085144. doi: 10.1136/bmjopen-2024-085144.
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.
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.
Participants were recruited from five local authority areas in England and interviewed via telephone and/or video call.
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.
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.
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.
在英国，新冠疫情期间，医疗、教育和社会保健服务的提供发生了重大变化。一些服务关闭，一些服务的能力下降，远程医疗的使用有所增加。本研究旨在了解神经发育障碍儿童和青少年的家庭如何应对这些服务变化，对他们来说哪些有效哪些无效，以及服务变化对他们有何影响。
对新冠疫情期间使用儿童健康、社会保健和教育服务的神经发育障碍儿童（0-19 岁）的家长进行定性研究。
参与者从英格兰的五个地方当局招募，并通过电话和/或视频通话进行访谈。
共采访了 48 名家长（45 名母亲，3 名父亲）和 9 名年轻人（8-16 岁）。48 名家长中有 55 名神经发育障碍儿童（43 名男性，12 名女性），年龄 3 至 19 岁不等。这些儿童的诊断包括自闭症、注意力缺陷多动障碍、脑瘫、遗传疾病和癫痫。9 名年轻人（8-16 岁；8 名男性，1 名女性）接受了采访；2 人单独采访，3 人接受小组采访，4 人与其家长一起接受采访。
确定了四个主题：（1）服务变化的沟通，（2）大流行期间服务的获取，（3）服务变化的影响，（4）为未来的紧急情况和重置服务学习。服务变化的沟通被报告为很差且令人困惑。大流行期间服务的获取情况各不相同。医疗服务受影响最小；治疗、以教育为基础的和社会保健服务受到严重干扰。服务变化对那些正在应对高水平医疗和身体及行为支持的家庭产生了不利影响。年轻人经历了服务变化对他们的身心健康的负面影响。
神经发育障碍儿童的服务需要以人为本、以家庭为中心的方法，并加强多学科团队合作。研究结果表明，需要改进服务内部和之间以及服务与家庭和年轻人之间的沟通。为未来的紧急情况做计划时，需要考虑到神经发育障碍儿童的特殊健康和护理需求，并维持服务的获取，特别是通过学校获得的服务。
