Empowering people with Parkinson’s disease: a student led service users’ evaluation of a group exercise programme

Purpose

This was a student led project, supervised by a university tutor, with the aim of evaluating service users’ opinions and experiences of a new model of physiotherapy service to people with Parkinson’s Disease (PD). In the new service model all newly diagnosed patients in the early stages of the disease (Hoehn and Yahr stages 1 and 2) are screened and referred, if appropriate, to a 10 week programme of group exercises (PD Viking Group) rather than to individual treatment sessions. The group exercises are based on principles from the PD Warrior programme that originated in Australia. They are designed to target specific symptoms of PD through a powerful, high effort , high frequency, meaningful and fun approach to exercise. Peer support and empowerment to exercise daily are key principles of the programme.

Approach

A qualitative approach was used. Two third year physiotherapy students held a focus group with 8 participants who had attended the PD Viking Group exercise programme. The focus group followed a schedule designed to encourage participants to share their experiences and opinions of the programme. The focus group was audio-recorded and transcribed verbatim. Data was analysed by a process of coding and identification of themes with independent verification of analysis by three authors to ensure credibility and dependability of the results.

Outcomes

Results: Five main themes were identified. Taking Control: participants felt they were ‘fighting’ the disease rather than just letting it happen to them. Physical and Mental Well-being: improved self-belief that they could live as they want to; feeling of well-being after each exercise group; improvements in participation in activities Peer and Professional Support: encouragement and motivation from peers and physiotherapists, social support and understanding from peers about living with PD. Abandoned; feeling of sadness and isolation when group had finished, diminished motivation to continue exercising, loss of peer and professional support. Improvements: group should include more education on PD, to have access to ongoing group exercise

Conclusion(s): PD Viking Group service model appears to empower people to feel more in control of PD in the short term when attending the 10 week programme. Peer support was a key element in motivation and empowerment. However, service users felt abandoned at the end of the 10 week programme resulting in decreased motivation to exercise. They had a strong desire for group exercise to continue in some form. There is scope for research to explore in more depth the impact of group exercise on service users’ quality of life, and also on the physical, psychosocial and economic benefits of providing longer term access to group exercise.

Cost and savings

There were no additional costs in setting up the service change.

Implications

Service users found the PD Viking Group to be an enjoyable and appropriate means of addressing some of the physical and psychosocial symptoms of PD through exercise and peer support. The physiotherapy service will continue to use this model for newly diagnosed patients to assist them in taking more control of their condition and prompt access to service provision.

Top three learning points

No further data 

Funding acknowledgements

The service evaluation was not funded