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

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.