Using family and staff experiences of a botulinum toxin-A service to improve service quality.

Abstract

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.

DOI: 10.1111/cch.12500

Cite this paper

@article{Burton2017UsingFA, title={Using family and staff experiences of a botulinum toxin-A service to improve service quality.}, author={K L O Burton and Kre{\vs}imir Bau and Jimmie Lewis and K R Aroyan and Belinda Botha and A. M. Botman and Kaitlyn Stewart and M A Waugh and Simon Paul Paget}, journal={Child: care, health and development}, year={2017}, volume={43 6}, pages={847-853} }