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

Cerebral palsy disability qualitative research social determinants of health unmet social needs

Journal

Disability and rehabilitation
ISSN: 1464-5165
Titre abrégé: Disabil Rehabil
Pays: England
ID NLM: 9207179

Informations de publication

Date de publication:
18 Aug 2024
Historique:
medline: 19 8 2024
pubmed: 19 8 2024
entrez: 19 8 2024
Statut: aheadofprint

Résumé

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. 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.

Autres résumés

Type: plain-language-summary (eng)
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.

Identifiants

pubmed: 39155439
doi: 10.1080/09638288.2024.2391557
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

1-10

Auteurs

Katarina Ostojic (K)

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.

Isra Karem (I)

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.

Simon Paget (S)

The Children's Hospital at Westmead Clinical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
The Children's Hospital at Westmead, Sydney Children's Hospitals Network, Sydney, Australia.

Laurel Mimmo (L)

Nursing Research Unit, Sydney Children's Hospitals Network, Sydney, Australia.
Centre for Health Systems and Safety, Australian Institute of Health Innovation, Macquarie University, Sydney, Australia.

Alison Berg (A)

The Children's Hospital at Westmead, Sydney Children's Hospitals Network, Sydney, Australia.

Timothy Scott (T)

Sydney Children's Hospital Randwick, Sydney Children's Hospitals Network, Sydney, Australia.
Faculty of Medicine and Graduate School of Biomedical Engineering, University of New South Wales, Sydney, Australia.

Heather Burnett (H)

HNEkidsRehab, John Hunter Children's Hospital, Newcastle, Australia.

Sarah McIntyre (S)

Cerebral Palsy Alliance Research Institute, Sydney Medical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.

Hayley Smithers-Sheedy (H)

Population Child Health Clinical Research Group, Faculty of Medicine and Health, University of New South Wales, Sydney, Australia.
Cerebral Palsy Alliance Research Institute, Sydney Medical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.

Sheikh Azmatullah (S)

EPIC-CP Group, University of New South Wales/University of Sydney, Sydney, Australia.

Jack Calderan (J)

EPIC-CP Group, University of New South Wales/University of Sydney, Sydney, Australia.

Masyitah Mohamed (M)

EPIC-CP Group, University of New South Wales/University of Sydney, Sydney, Australia.

Anne Olaso (A)

EPIC-CP Group, University of New South Wales/University of Sydney, Sydney, Australia.

Debbie van Hoek (D)

EPIC-CP Group, University of New South Wales/University of Sydney, Sydney, Australia.

Matthew van Hoek (M)

EPIC-CP Group, University of New South Wales/University of Sydney, Sydney, Australia.

Mackenzie Woodbury (M)

EPIC-CP Group, University of New South Wales/University of Sydney, Sydney, Australia.

Alunya Wilkinson (A)

EPIC-CP Group, University of New South Wales/University of Sydney, Sydney, Australia.

Georgina Henry (G)

Cerebral Palsy Alliance Research Institute, Sydney Medical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.

Shaini Shiva (S)

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.

Karen Zwi (K)

Population Child Health Clinical Research Group, Faculty of Medicine and Health, University of New South Wales, Sydney, Australia.
Sydney Children's Hospital Randwick, Sydney Children's Hospitals Network, Sydney, Australia.

Raghu Lingam (R)

Population Child Health Clinical Research Group, Faculty of Medicine and Health, University of New South Wales, Sydney, Australia.

Russell Dale (R)

The Children's Hospital at Westmead Clinical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
The Children's Hospital at Westmead, Sydney Children's Hospitals Network, Sydney, Australia.

Valsamma Eapen (V)

Academic Unit of Child Psychiatry, Discipline of Psychiatry and Mental Health, School of Clinical Medicine, University of New South Wales, Sydney, Australia.

Betty-Jean Dee-Price (BJ)

Southgate Institute for Health, Society and Equity, Flinders University, Adelaide, Australia.

Iva Strnadová (I)

School of Education, Faculty of Arts, Design and Architecture, University of New South Wales Sydney, Sydney, Australia.
Disability Innovation Institute, University of New South Wales Sydney, Sydney, Australia.

Sue Woolfenden (S)

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.
Community Paediatrics, Sydney Local Health District, Sydney, Australia.
EPIC-CP Group, University of New South Wales/University of Sydney, Sydney, Australia.

Classifications MeSH