Using family and staff experiences of a botulinum toxin : a service to improve service quality

K. L. O. Burton, K. Bau, J. Lewis, K. R. Aroyan, B. Botha, A. G. M. Botman, K. Stewart, M.-C. A. Waugh, S. P. Paget

Research output: Contribution to journalArticlepeer-review

3 Citations (Scopus)


Background: The decision for families to proceed with botulinum toxin-A (BoNT-A) injections for managing childhood conditions involving hypertonia can be complex. Family-centred care is a service model that facilitates supporting families in this decision-making process. Understanding families' experiences of services is critical to developing family-centred care. The aim of this project was therefore to increase understanding of the experiences of families of children attending a BoNT-A service in order to improve the service and its family-centred approach to care. Method: Sixteen staff of a BoNT-A service participated in a patient journey mapping exercise. Nine families of the service participated in in-depth interviews. Interviews were audio-recorded and transcribed verbatim. Data from the staff session and interviews were analysed independently using grounded, hermeneutic thematic analysis. Results: Staff sessions revealed 5 core themes that related to impacting on the family experience. Family interviews revealed 4 core themes, with 7 subthemes and 1 latent theme. Conclusions: Areas of importance identified by families relating to BoNT-A treatment included acknowledgement of individual needs, care coordination, empowerment of families and patients, consistency in service delivery, and the distressing nature of appointment and decision-making. Comparison of the data from the staff patient journey mapping and family interviews suggested that staff have a good but incomplete understanding of the factors important to families, highlighting the need for consumer engagement in establishing family-centred care. The themes identified can guide the provision of family-centred BoNT-A injection clinics.

Original languageEnglish
Pages (from-to)847-853
Number of pages7
JournalChild: Care, Health and Development
Issue number6
Publication statusPublished - Nov 2017
Externally publishedYes


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