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

被引：1

作者：

Ostojic, Katarina ^{[1
,2
]}

Karem, Isra ^{[1
,2
]}

Paget, Simon ^{[3
,4
]}

Mimmo, Laurel ^{[5
,6
]}

Berg, Alison ^{[4
]}

Scott, Timothy ^{[7
,8
,9
]}

Burnett, Heather ^{[10
]}

Mcintyre, Sarah ^{[11
]}

Smithers-Sheedy, Hayley ^{[2
,11
]}

Azmatullah, Sheikh ^{[12
]}

Calderan, Jack ^{[12
]}

Mohamed, Masyitah ^{[12
]}

Olaso, Anne ^{[12
]}

van Hoek, Debbie ^{[12
]}

van Hoek, Matthew ^{[12
]}

Woodbury, Mackenzie ^{[12
]}

Wilkinson, Alunya ^{[12
]}

Henry, Georgina ^{[11
]}

Shiva, Shaini ^{[1
,2
]}

Zwi, Karen ^{[2
,7
]}

Lingam, Raghu ^{[2
]}

Dale, Russell ^{[3
,4
]}

Eapen, Valsamma ^{[13
]}

Dee-Price, Betty-Jean ^{[14
]}

Strnadova, Iva ^{[15
,16
]}

Woolfenden, Sue ^{[1
,2
,17
]}

机构：

[1] Univ Sydney, Fac Med & Hlth, Cent Clin Sch, Sydney Med Sch,Community Paediat Res Grp, Susan Wakil Hlth Bldg,Western Ave, Sydney, NSW 2006, Australia

[2] Univ New South Wales, Fac Med & Hlth, Populat Child Hlth Clin Res Grp, Sydney, NSW, Australia

[3] Univ Sydney, Childrens Hosp, Fac Med & Hlth, Westmead Clin Sch, Sydney, NSW, Australia

[4] Childrens Hosp Westmead, Sydney Childrens Hosp Network, Sydney, NSW, Australia

[5] Sydney Childrens Hosp Network, Nursing Res Unit, Sydney, NSW, Australia

[6] Macquarie Univ, Australian Inst Hlth Innovat, Ctr Hlth Syst & Safety, Sydney, NSW, Australia

[7] Sydney Childrens Hosp Network, Sydney Childrens Hosp Randwick, Sydney, NSW, Australia

[8] Univ New South Wales, Fac Med, Sydney, NSW, Australia

[9] Univ New South Wales, Grad Sch Biomed Engn, Sydney, NSW, Australia

[10] John Hunter Childrens Hosp, HNEkidsRehab, Newcastle, NSW, Australia

[11] Univ Sydney, Cerebral Palsy Alliance Res Inst, Fac Med & Hlth, Sydney Med Sch, Sydney, NSW, Australia

[12] Univ Sydney, Univ New South Wales, EPIC CP Grp, Sydney, NSW, Australia

[13] Univ New South Wales, Sch Clin Med, Acad Unit Child Psychiat, Discipline Psychiat & Mental Hlth, Sydney, NSW, Australia

[14] Flinders Univ S Australia, Southgate Inst Hlth Soc & Equ, Adelaide, SA, Australia

[15] Univ New South Wales Sydney, Fac Arts Design & Architecture, Sch Educ, Sydney, NSW, Australia

[16] Univ New South Wales Sydney, Disabil Innovat Inst, Sydney, NSW, Australia

[17] Community Paediat, Sydney Local Hlth Dist, Sydney, NSW, Australia

来源：

DISABILITY AND REHABILITATION | 2024年

关键词：

Cerebral palsy; unmet social needs; social determinants of health; disability; qualitative research; LONG-TERM CONDITION; HEALTH; CLASSIFICATION; PARTNERSHIP; DISABILITY; IMPACT; CARE;

D O I：

10.1080/09638288.2024.2391557

中图分类号：

R49 [康复医学];

学科分类号：

100215 ;

摘要：

PurposeTo 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 methodsEligible 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.ResultsA 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.ConclusionUnmet 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.

引用

页数：10

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