A qualitative study investigating the experiences of unmet social needs for children with cerebral palsy and their families: perspectives of parents and clinicians

Katarina Ostojic; Isra Karem; Simon Paget; Laurel Mimmo; Alison Berg; Timothy Scott; Heather Burnett; Sarah McIntyre; Hayley Smithers-Sheedy; Sheikh Azmatullah; Jack Calderan; Masyitah Mohamed; Anne Olaso; Debbie van Hoek; Matthew van Hoek; Mackenzie Woodbury; Alunya Wilkinson; Georgina Henry; Shaini Shiva; Karen Zwi; Raghu Lingam; Russell Dale; Valsamma Eapen; Betty-Jean Dee-Price; Iva Strnadová; Sue Woolfenden; EPIC-CP Group

doi:10.1080/09638288.2024.2391557

A qualitative study investigating the experiences of unmet social needs for children with cerebral palsy and their families: perspectives of parents and clinicians

Disabil Rehabil. 2024 Aug 18:1-10. doi: 10.1080/09638288.2024.2391557. Online ahead of print.

Authors

Katarina Ostojic^{1

2}, Isra Karem^{1

2}, Simon Paget^{3

4}, Laurel Mimmo^{5

6}, Alison Berg⁴, Timothy Scott^{7

8}, Heather Burnett⁹, Sarah McIntyre¹⁰, Hayley Smithers-Sheedy^{2

10}, Sheikh Azmatullah¹¹, Jack Calderan¹¹, Masyitah Mohamed¹¹, Anne Olaso¹¹, Debbie van Hoek¹¹, Matthew van Hoek¹¹, Mackenzie Woodbury¹¹, Alunya Wilkinson¹¹, Georgina Henry¹⁰, Shaini Shiva^{1

2}, Karen Zwi^{2

7}, Raghu Lingam², Russell Dale^{3

4}, Valsamma Eapen¹², Betty-Jean Dee-Price¹³, Iva Strnadová^{14

15}, Sue Woolfenden^{1

2

16}; EPIC-CP Group¹¹

Affiliations

¹ Community Paediatrics Research Group, Central Clinical School, Sydney Medical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
² Population Child Health Clinical Research Group, Faculty of Medicine and Health, University of New South Wales, Sydney, Australia.
³ The Children's Hospital at Westmead Clinical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
⁴ The Children's Hospital at Westmead, Sydney Children's Hospitals Network, Sydney, Australia.
⁵ Nursing Research Unit, Sydney Children's Hospitals Network, Sydney, Australia.
⁶ Centre for Health Systems and Safety, Australian Institute of Health Innovation, Macquarie University, Sydney, Australia.
⁷ Sydney Children's Hospital Randwick, Sydney Children's Hospitals Network, Sydney, Australia.
⁸ Faculty of Medicine and Graduate School of Biomedical Engineering, University of New South Wales, Sydney, Australia.
⁹ HNEkidsRehab, John Hunter Children's Hospital, Newcastle, Australia.
¹⁰ Cerebral Palsy Alliance Research Institute, Sydney Medical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
¹¹ EPIC-CP Group, University of New South Wales/University of Sydney, Sydney, Australia.
¹² Academic Unit of Child Psychiatry, Discipline of Psychiatry and Mental Health, School of Clinical Medicine, University of New South Wales, Sydney, Australia.
¹³ Southgate Institute for Health, Society and Equity, Flinders University, Adelaide, Australia.
¹⁴ School of Education, Faculty of Arts, Design and Architecture, University of New South Wales Sydney, Sydney, Australia.
¹⁵ Disability Innovation Institute, University of New South Wales Sydney, Sydney, Australia.
¹⁶ Community Paediatrics, Sydney Local Health District, Sydney, Australia.

PMID: 39155439
DOI: 10.1080/09638288.2024.2391557

Abstract

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.

Keywords: Cerebral palsy; disability; qualitative research; social determinants of health; unmet social needs.

Plain language summary

Many families experience a vicious cycle of disability, unmet social needs, and access – which service providers should thoughtfully consider when providing patient-centred care.For many families, a child’s disability impacts their unmet social needs, which influences their access to services and has consequences on their disability and wellbeing.Addressing unmet social needs is a priority for all people working with families of children with cerebral palsy including health, social care, and education providers.Integrated health-social care models such as social prescribing have the potential to support families to address their unmet social needs and warrant consideration within rehabilitation care.