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

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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
Source: Disability & Rehabilitation. May2025, Vol. 47 Issue 9, p2278-2287. 10p.
Subjects: Families & psychology, Health services accessibility, Pediatric nurses, Social determinants of health, Pediatricians, Qualitative research, Psychology of children with disabilities, Research funding, Interviewing, Questionnaires, Cerebral palsy, Parent attitudes, Rehabilitation of children with disabilities, Children's hospitals, Rehabilitation centers, Thematic analysis, Family attitudes, Attitudes of medical personnel, Research, Conceptual structures, Research methodology, Needs assessment, Medical needs assessment, Psychology of parents, Psychology of caregivers, Comparative studies, Parents of children with disabilities, Social support, Psychosocial factors, Caregiver attitudes, Children
Geographic Terms: New South Wales
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. IMPLICATIONS FOR REHABILITATION: 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. [ABSTRACT FROM AUTHOR]
Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: A qualitative study investigating the experiences of unmet social needs for children with cerebral palsy and their families: perspectives of parents and clinicians.
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  Data: 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. IMPLICATIONS FOR REHABILITATION: 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. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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        Value: 10.1080/09638288.2024.2391557
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        Type: general
      – SubjectFull: Health services accessibility
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      – SubjectFull: Pediatric nurses
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      – SubjectFull: Cerebral palsy
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