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J Paediatr Child Health. 2019 Jun 17. doi: 10.1111/jpc.14537. [Epub ahead of print]

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

Author information

1
Centre of Research Excellence in Cerebral Palsy, Murdoch Children's Research Institute, Melbourne, Victoria, Australia.
2
Orthopaedic Department, The Royal Children's Hospital, Melbourne, Victoria, Australia.
3
Murdoch Children's Research Institute, Melbourne, Victoria, Australia.
4
Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia.
5
Neurodevelopment and Disability, Royal Children's Hospital, Melbourne, Victoria, Australia.

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

PMID:
31206912
DOI:
10.1111/jpc.14537

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