More than an X‐ray: Experiences and perspectives of parents of children with cerebral palsy when engaging in hip surveillance. (17th June 2019)

• Record Type: Journal Article
• Authors: Toovey, Rachel; Willoughby, Kate L; Hodgson, Jan M; Graham, H Kerr; Reddihough, Dinah S
• Is Part Of: Journal of paediatrics and child health. Volume 56:Number 1(2020)
• Page Start: 130
• Page End: 135
• Publication Date: 2019-06-17
• Subjects: cerebral palsy -- hip displacement -- hip surveillance; Children -- Health and hygiene -- Periodicals; Pediatrics -- Periodicals; 618.92
• DOI: 10.1111/jpc.14537
• Languages: English
• ISSNs: 1034-4810

Abstract

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.