Engaging the MS Community on Exercise Services for Those Living in Rural Australia

Background: Consumer engagement is vital in multiple sclerosis (MS) research to optimise outcomes for patients, society and healthcare systems. Participation in exercise offers multiple benefits to persons with MS. Despite these benefits few persons with MS engage in exercise behaviours. All stakeholders in the MS community must be engaged to identify potential solution to this problem. Non-participation in exercise is often related to availability of services. Patients living in rural Australia represent a population who might not have access to metropolitan services and thus not have access to optimal patient care. It is important to understand experiences of this barrier and to identify potential solutions from all stakeholders. This will help target the direction of research to optimise clinical practice.

Objectives: To engage with the MS community and explore the experiences and services related to exercise delivered by professionals in rural Australia, and to understand what physical activity and exercise services members of the MS community prioritise and require to increase overall participation in exercise.

Methods: Thirty-eight participants representing four groups of the MS community who live in rural Australia engaged in focus group and interview discussions. The groups represented persons with MS (n=14), carers (n=8), healthcare professionals (n=8) and managers/directors of health services (n=8). Participants commented on new theories related to physical activity service delivery in rural Australia. Coding and thematic analysis was performed on the qualitative data.

Results: Analysis identified all stakeholders were aware of the benefits of exercise for those with MS, further all stakeholders were aware of budgetary restrictions limiting clinical availability of exercise services. We identified similarities in the perspectives of persons with MS, carers and healthcare providers, namely that 1. Knowledge of accessible physical activity services is lacking and 2. Motivation to engage in physical activity is driven by availability of services. Perspectives of managers/directors, and healthcare professionals revealed the impact of recent legislative changes resulting in divisions of service delivery for persons with disabilities represented a barrier to optimal exercise delivery.

Conclusions: Exercise participation is important for persons living with MS, engagement from the entire MS community is required to understand exercise service delivery. Multiple stakeholder groups hold unique information on barriers experienced by the patient with MS. Rural communities might better advertise generic exercise services to optimise patient engagement. When required specialised guidance related to MS and exercise might be provided from a more central position, and it is important to allow for this in financial and legislative planning.