Mind the gap: patient perspectives on missing links in access to and participation in exercise and rehabilitation of polyneuropathy

PURPOSE: The study aimed to explore how patients with polyneuropathy experience access to and participation in exercise and rehabilitation, how they perceive the provided exercise, and to understand the facilitators and barriers to engagement in exercise and rehabilitation. MATERIALS AND METHODS: We performed a qualitative study interviewing patients with polyneuropathy. The study combined deductive and inductive approaches. While the interview guide was developed based on our clinical experience and knowledge and informed by the COM-B model, the analysis was data-driven, following Reflexive Thematic Analysis as described by Braun & Clarke. RESULTS: Thirteen participants were included. We generated three themes and eight subthemes. The themes were: (1) Exercise as a cornerstone of everyday life; (2) Navigating polyneuropathy and exercise depends on information, guidance, and support; (3) Individualized exercise: through professional expertise, adaptation, and patient experiences. CONCLUSIONS: Participants perceived access to and participation in the exercise and rehabilitation provided to vary considerably, with gaps in support. Facilitators for exercise included viewing exercise as imperative to regaining physical functioning to preserve identity, as well as individualized assessments, adjustments, and goal setting. Barriers to exercise included unspecific exercises, insufficient information and guidance from physiotherapists, leading to uncertainty about exercise planning, safety, and effectiveness.