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

Abstract

Purpose To explore the perspectives of primary caregivers of children with cerebral palsy (CP) who had spinal surgery for scoliosis. Materials and Methods 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. Results Fourteen participants (8 biological mothers), aged 40–49 years, completed online semi-structured interviews. Four themes were identified emerged. Life with a child with CP underpinned all experiences which were founded on familiarity with their child, medical procedures, and hospitalisation. Three subthemes were parents are the experts in knowing their child, children are vulnerable, and impact on caregivers. Theme 2 involved the significance of decision making to proceed with surgery. Theme 3 underscored a need to be prepared for the surgical journey and, in Theme 4, participants spoke of needing to expect the unexpected. Conclusion 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.