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More than an X‐ray: Experiences and perspectives of parents of children with cerebral palsy when engaging in hip surveillance
Author(s) -
Toovey Rachel,
Willoughby Kate L,
Hodgson Jan M,
Graham H Kerr,
Reddihough Dinah S
Publication year - 2020
Publication title -
journal of paediatrics and child health
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.631
H-Index - 76
eISSN - 1440-1754
pISSN - 1034-4810
DOI - 10.1111/jpc.14537
Subject(s) - cerebral palsy , medicine , focus group , health professionals , consistency (knowledge bases) , health care , physical therapy , geometry , mathematics , marketing , economic growth , economics , business
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.