More than an X-ray: Experiences and perspectives of parents of children with cerebral palsy when engaging in hip surveillance

J Paediatr Child Health. 2020 Jan;56(1):130-135. doi: 10.1111/jpc.14537. Epub 2019 Jun 17.

Abstract

Aim: We explored the experiences of parents of children with cerebral palsy (CP) when engaging in hip surveillance for their child and aimed to identify the barriers and facilitators they encounter.

Methods: We conducted a pragmatic qualitative study through five focus groups conducted with 23 parents and primary care givers of young people with cerebral palsy. A semi-structured topic guide was used to facilitate discussion. Recordings were transcribed verbatim and transcripts analysed using content analysis.

Results: Six major categories emerged: (i) hip surveillance is a shared responsibility; (ii) knowledge is empowering; (iii) hip surveillance should be proactive rather than reactive; (iv) consistency and support from health professionals is valuable; (v) good communication is crucial; and (vi) challenges associated with having an X-ray may not be appreciated. Participants made recommendations related to: service model enhancements, information provision and improving both communication and the experience of having an X-ray.

Conclusion: Despite having a good understanding of the need and importance of hip surveillance for their child, several barriers to parent engagement exist. Findings will inform the implementation of a family-centred model for hip surveillance and may be relevant to those undertaking or planning the implementation of hip surveillance in other areas.

Keywords: cerebral palsy; hip displacement; hip surveillance.

MeSH terms

  • Adolescent
  • Cerebral Palsy*
  • Child
  • Communication
  • Humans
  • Parents
  • Radiography
  • X-Rays