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

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. 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. 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. 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. Barriers to following evidence-based recommendations for spasticity management include issues with access to clinical services and rehabilitation optionsPatients with spasticity would like more information about their condition and recent developments in our understanding of the spasticity and possible treatments.The multi-disciplinary team approach is valued, but goal-setting is challenging for many due to memory issues and the ability to set realistic goals, rather than hoping for a miracle. Barriers to following evidence-based recommendations for spasticity management include issues with access to clinical services and rehabilitation options Patients with spasticity would like more information about their condition and recent developments in our understanding of the spasticity and possible treatments. The multi-disciplinary team approach is valued, but goal-setting is challenging for many due to memory issues and the ability to set realistic goals, rather than hoping for a miracle.