Searchable abstracts of presentations at key conferences on calcified tissues
Bone Abstracts (2017) 6 P198 | DOI: 10.1530/boneabs.6.P198

ICCBH2017 Poster Presentations (1) (209 abstracts)

Hearing the patient's voice: a focus group listening to the child and parent experiences of living with rare bone diseases

Jill Massey , Katie Phillips , Michael Cornish , Caron Lawson , Melita Irving & Moira Cheung

Evelina London Children’s Hospital, London, UK.

• To establish the child and family experience of attending multi-disciplinary clinics within the rare bone disease service at Evelina London Children’s Hospital.

• To gain an understanding of the daily challenges the children, young people and families face.

• To understand how the tertiary multi-disciplinary team may support the child, young person and family.

Methods: Participants were recruited from Evelina London Children’s Hospital’s rare bone disease service. Twelve parents participated in the focus group along with seven children (n=19). The children’s group consisted of five patients with rare bone conditions (achondroplasia, acromicric dysplasia, hypophosphataemic rickets, spondylo-epiphyseal dysplasia congenita, multiple epiphyseal dysplasia, hypochondroplasia), and two unaffected siblings. The children participated in an activity-based group. The parents’ focus group ran in parallel. The discussion was voice recorded, transcribed and themes elicited. The themes from the children’s group were derived from written notes taken by the facilitators and written excerpts produced by the children.

Results: Thematic analysis revealed the following primary parental themes. i) The tertiary approach with professionals who cared about the wellbeing of their child and family is valued. ii) Continuity offered by local teams remains important iii) Practical suggestions for service improvement were offered iv) Transitions in childhood pose difficulties v) Daily life can present challenges for the child and their family. The children and young people’s themes encompassed the following: i) Ways to improve their clinic experiences ii) The challenges of daily life and iii) Which professionals may help to support them.

Conclusion: There is limited literature to date, which considers the patient’s voice in children with rare bone diseases. This articulate group have contributed valuable insight for clinicians working with this population. Results of this research will enable us to develop best practice in a tertiary setting. We highly recommend this family-centred approach, listening to the patient’s voice should be considered by other services internationally to drive care forward.

Disclosure: The authors declared no competing interests.

Volume 6

8th International Conference on Children's Bone Health


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