A qualitative study investigating the experiences of unmet social needs for children with cerebral palsy and their families:perspectives of parents and clinicians
| Title: | A qualitative study investigating the experiences of unmet social needs for children with cerebral palsy and their families:perspectives of parents and clinicians |
|---|---|
| Authors: | 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 |
| Source: | Ostojic, K, Karem, I, Paget, S, Mimmo, L, Berg, A, Scott, T, Burnett, H, McIntyre, S, Smithers-Sheedy, H, Azmatullah, S, Calderan, J, Mohamed, M, Olaso, A, van Hoek, D, van Hoek, M, Woodbury, M, Wilkinson, A, Henry, G, Shiva, S, Zwi, K, Lingam, R, Dale, R, Eapen, V, Dee-Price, B J, Strnadová, I, Woolfenden, S 2025, 'A qualitative study investigating the experiences of unmet social needs for children with cerebral palsy and their families : perspectives of parents and clinicians', Disability and Rehabilitation, vol. 47, no. 9, pp. 2278-2287. https://doi.org/10.1080/09638288.2024.2391557 |
| Publication Year: | 2025 |
| Subject Terms: | Cerebral palsy; disability; qualitative research; social determinants of health; unmet social needs |
| Description: | Purpose: 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. Material and methods: 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. Results: 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. Conclusion: 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. |
| Document Type: | article in journal/newspaper |
| File Description: | application/pdf |
| Language: | English |
| Relation: | info:eu-repo/semantics/altIdentifier/pmid/39155439; info:eu-repo/semantics/altIdentifier/wos/001292932600001 |
| DOI: | 10.1080/09638288.2024.2391557 |
| Availability: | https://researchers.mq.edu.au/en/publications/7ed17002-fbdd-4731-a269-7ad0b9907f99; https://doi.org/10.1080/09638288.2024.2391557; https://research-management.mq.edu.au/ws/files/426384834/Publisher_version_open_access_.pdf; https://www.scopus.com/pages/publications/85201550940 |
| Rights: | info:eu-repo/semantics/openAccess ; http://creativecommons.org/licenses/by-nc-nd/4.0/ |
| Accession Number: | edsbas.B8B0F2B4 |
| Database: | BASE |