Barriers and facilitators to receiving best practice spasticity care: a qualitative study of consumer perspectives

PURPOSE: Best-practice spasticity management relies on multidisciplinary, person-centred care; however, little is known about consumers' personal experiences. This study explored the lived experiences of people with spasticity and their caregivers to identify opportunities to improve care. MATERIALS AND METHODS: A qualitative study involving semi-structured interviews was conducted in a public spasticity clinic with adults experiencing spasticity and their caregivers. Data were thematically analysed using an interpretive descriptive approach to identify enablers and barriers to best-practice care. RESULTS: Twelve participants described varied experiences. Four themes emerged: [1] "If they want to take me, okay, I'm going": participants described barriers to attendance but valued the sense of purpose; [2] "I don't have a great understanding… because I've forgotten": many reported limited understanding of spasticity, treatment, or follow-up therapy: [3] "Everybody is pushing the same way, but nobody is working together": experiences of teamwork and post-injection therapy varied; [4] "We were old hands at it anyway": goal setting, terminology and treatment expectations differed by diagnosis and disease duration. CONCLUSIONS: Participants identified challenges in communication, continuity, and accessibility across spasticity services. Incorporating perspectives from varied diagnoses broadens understanding of shared service challenges. Further work will partner with consumers to drive improvements.