Abstract
There is a social gradient between the unmet needs of an individual with cerebral palsy (CP) and their health and wellbeing outcomes. To date, research has not explored the experience of unmet social needs for children with cerebral palsy and their families and how they may impact their lives. Our study sought to address this knowledge gap through qualitative research methods. Our aim was to understand the experiences of unmet social needs for families of children with CP aged 0-18 years who attend paediatric rehabilitation services, from the perspective of children, parents/caregivers, and their clinicians. Qualitative data was gathered using semi-structured interviews (children, parents/caregivers) and semi-structured focus groups (clinicians). Interviews and focus groups explored the impact of unmet social needs on children with CP and their families, enablers to addressing unmet social needs, and barriers to addressing unmet social needs. Interviews and focus groups were designed in conjunction with focus groups of young people with CP and parents of young people with CP. A total of 43 participants (8 parents and 35 clinicians) took part. Analysis of the qualitative data identified four main themes and 1 sub-themes. The main themes were: (1) Unmet social needs are pervasive, (2) A broken system with systemic downfalls and no roadmap, (3) Unmet social needs impact all aspects of life, and (4) It takes a village to raise a child. Our study affirmed that addressing unmet social needs are a priority for families and clinicians alike and contribute to the difficulties children with cerebral palsy and their families face navigating systems and health, education, and social services. This qualitative research formed part of a larger study to codesign an intervention to address unmet social needs in families of children with CP. Understanding the lived experience of unmet social needs is a key step in developing health system interventions that can with families systematically identify and address inequitable health outcomes for children with cerebral palsy.