Caregiver perspectives of scoliosis surgery for children with cerebral palsy: a qualitative study.

Abstract

To explore the perspectives of primary caregivers of children with cerebral palsy (CP) who had spinal surgery for scoliosis. A qualitative study was conducted using semi-structured interviews and guided by qualitative description methodology. Participants were caregivers of children with CP aged 5-18, who had undergone spinal surgery for scoliosis in Australia. The research team included a parent with lived experience. Fourteen participants (8 biological mothers), aged 40-49 years, completed online semi-structured interviews. Four themes were identified emerged. <i>Life with a child with CP</i> underpinned all experiences which were founded on familiarity with their child, medical procedures, and hospitalisation. Three subthemes were <i>parents are the experts in knowing their child</i>, <i>children are vulnerable,</i> and <i>impact on caregivers</i>. Theme 2 involved the significance of <i>decision making</i> to proceed with surgery. Theme 3 underscored a need to <i>be prepared</i> for the surgical journey and, in Theme 4, participants spoke of needing to <i>expect the unexpected</i>. The findings highlight the importance of understanding caregiver experiences and can help inform health professionals and other families in the decision-making process, preparing for and navigating spinal surgery.