Background
Spasticity is a common complication after stroke. Although botulinum toxin type A is an evidence‑based treatment alongside therapy, access remains inconsistent. Limited data integrate survivor, carer, and clinician perspectives on spasticity management.
Aim
Understand lived experience and clinician perspectives on barriers, access, and opportunities for improving post‑stroke spasticity care.
Methods
Mixed‑methods involved lived experience (n=45) and clinician (n=23) surveys. Lived experience surveys explored awareness, timing of information, access to botulinum toxin and therapy. Clinician surveys examined barriers, challenges, and potential solutions. Findings were contextualised through peer‑led survivor focus groups (n=13) and semi‑structured interviews with clinicians (n=3).
Results
Across lived experience findings, awareness of spasticity and botulinum toxin was frequently delayed or absent. More than half (57%) reported receiving no information about botulinum toxin for spasticity management. Where information was provided, it was predominantly verbal. Among respondents who received botulinum toxin, fewer than half (44%) reported consistent access to follow‑up therapy. Clinician findings aligned with survivor experiences, identifying fragmented referral pathways, limited specialist availability, funding constraints, workforce training gaps, and organisational pressures that constrained guideline‑aligned care. Both groups highlighted impacts of delayed identification, poor coordination, and inequitable access.
Conclusion
Lived experience and clinician perspectives reveal consistent system‑level barriers to equitable and effective post‑stroke spasticity management in Australia. Early, standardised education, clearer referral pathways, integrated therapy access, and workforce upskilling were identified as priorities. Aligning co‑designed lived experience and clinician perspectives offers opportunities to improve coordination, equity, and outcomes across the care continuum.