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

• Published in: Child : care, health & development health & development, 2017-11, Vol.43 (6), p.847-853
• Main Authors: Burton, K. L. O., Bau, K., Lewis, J., Aroyan, K. R., Botha, B., Botman, A. G. M., Stewart, K., Waugh, M.‐C. A., Paget, S. P.
• Format: Article
• Language: English
• Subjects: BoNT‐A service; Botulinum toxin; botulinum toxin‐A service; Childhood; Coordination; Decision making; Empowerment; Exercise; Family (Sociological Unit); Family centered care; family experiences; family‐centred service; Individual Needs; Mapping; quality improvement; Quality of service; service improvement; Understanding
• ISSN: 0305-1862; 1365-2214
• DOI: 10.1111/cch.12500

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.