Ostojic Katarina, Karem Isra, Paget Simon, Mimmo Laurel, Berg Alison, Scott Timothy, Burnett Heather, McIntyre Sarah, Smithers-Sheedy Hayley, Azmatullah Sheikh, Calderan Jack, Mohamed Masyitah, Olaso Anne, van Hoek Debbie, van Hoek Matthew, Woodbury Mackenzie, Wilkinson Alunya, Henry Georgina, Shiva Shaini, Zwi Karen, Lingam Raghu, Dale Russell, Eapen Valsamma, Dee-Price Betty-Jean, Strnadová Iva, Woolfenden Sue
Community Paediatrics Research Group, Central Clinical School, Sydney Medical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Population Child Health Clinical Research Group, Faculty of Medicine and Health, University of New South Wales, Sydney, Australia.
Disabil Rehabil. 2025 May;47(9):2278-2287. doi: 10.1080/09638288.2024.2391557. Epub 2024 Aug 18.
To explore (i) the impact of unmet social needs on children with cerebral palsy and their families; (ii) enablers-, and (iii) barriers to addressing unmet social needs.
Eligible participants attended or worked at one of the three Paediatric Rehabilitation Departments including: children with a diagnosis of cerebral palsy; parents/carers; and clinicians. One-on-one interviews were conducted with parents/carers and focus groups with clinicians. Interview and focus group transcripts were deductively thematically analysed according to the social model of disability.
A total of 44 participants (8 parents and 36 clinicians) took part. No children consented to participate. Analysis of the qualitative data identified four main themes and 14 sub-themes. The main themes were: Unmet social needs are pervasive; An inequitable health system with no roadmap; Everyone suffers as a result of unmet social needs; and It takes a village to raise a child.
Unmet social needs have profound impacts on families. The experiences of unmet social needs are intensified by the extra complexities of raising a child with disability. Societal barriers including inequitable systems and the fragmented services are barriers impeding on families receiving support and ultimately limiting their wellbeing.
探讨（i）未满足的社会需求对脑瘫儿童及其家庭的影响；（ii）促成因素；以及（iii）解决未满足的社会需求的障碍。
符合条件的参与者在三个儿科康复部门之一就诊或工作，包括：被诊断为脑瘫的儿童；父母/照顾者；以及临床医生。对父母/照顾者进行一对一访谈，并与临床医生进行焦点小组讨论。根据残疾的社会模型对访谈和焦点小组记录进行演绎主题分析。
共有44名参与者（8名父母和36名临床医生）参与。没有儿童同意参与。对定性数据的分析确定了四个主要主题和14个子主题。主要主题为：未满足的社会需求普遍存在；缺乏路线图的不公平卫生系统；未满足的社会需求使每个人都受苦；以及养育孩子需要众人之力。
未满足的社会需求对家庭有深远影响。抚养残疾儿童的额外复杂性加剧了未满足社会需求的经历。包括不公平系统和分散服务在内的社会障碍阻碍了家庭获得支持，并最终限制了他们的福祉。
