“Tell me what you want, what you really really want….”: asking people with multiple sclerosis about enhancing their participation in physical activity

Abstract

Purpose: This paper provides a review of research that emphasizes the importance of listening to the people whom health professionals serve when promoting participation and engagement in rehabilitation. We report on the development of an approach aiming to optimize long-term adherence in physical activity for people with multiple sclerosis (MS). This approach was very different to those based on current evidence-based exercise recommendations, although the objectives for both approaches were similar. Key message: We argue that only by ensuring that people living with chronic disability not only have a voice but a voice that is listened to, can health professionals truly engage in evidenced-based practice that works in application and meets the needs, desires and capabilities of people with MS and other chronic health conditions.

Implications for Rehabilitation

• Participation in physical activity is important for people living with chronic disability to maintain long-term health and well-being and prevent secondary complications of disability.

• To truly engage in evidenced-based practice the needs, desires and capabilities of the people for whom the intervention is targeted need to be considered and addressed.

• Service development and refinement which draws on perspectives of people living with chronic disabling conditions may enhance longer term adherence.

Keywords::

• Choice
• control
• exercise
• multiple sclerosis
• physical activity
• qualitative studies

Declaration of Interest: Rehabilitation and Disability Research Theme (University of Otago) grant, University of Otago PhD scholarship, Health Research Council of New Zealand Disability Placement Scholarship, University of Otago Research Grant. Contributions to the development of the Blue Prescription approach: Dr Sarah Dean, Senior Lecturer in Health Services Research, Peninsula College of Medicine and Dentistry, University of Exeter.