Shields N1, Westle A1, Bennell K2, Taylor N1
1La Trobe University, Melbourne, Australia, 2University of Melbourne, Melbourne, Australia
Background: Exercise is an essential component of health management for people with Prader Willi syndrome (PWS), a rare, genetic condition. However, studies consistently show people with PWS are sedentary. Low muscle tone, muscle weakness, poor motor proficiency, intellectual disability and complex behavioural issues make it more difficult for them to exercise. They also require supervision to exercise as left unsupervised they can go to extreme lengths to eat large quantities of food due to hyperphagia. No study has investigated if community-based exercise programs supervised by physiotherapists are feasible for people with PWS.
Purpose: To explore the experiences of physiotherapists delivering community-based progressive resistance training for people with PWS.
Methods: A descriptive study using qualitative methods within a phenomenology theoretical framework was completed, alongside a phase I randomised feasibility trial. Ethics approval was obtained and participants provided written informed consent. Participants were fifteen physiotherapists (13 female) who supervised 14 young adults with PWS to complete a progressive resistance training program, twice per week for 10 weeks at a community gym. Semi-structured interviews with the physiotherapists were audio-recorded and transcribed verbatim. Interview transcripts were checked for accuracy by the physiotherapists. Data were analysed using thematic analysis with an inductive approach and data were managed using NVivo software.
Results: The exercise program supervised by the physiotherapists was feasible and safe. Participants with PWS attended 92% of scheduled sessions and there were no serious adverse events. Development of positive rapport between physiotherapists and people with PWS emerged as the critical factor in facilitating exercise participation. Components of developing positive rapport with a person with PWS included clear communication, adaptability in approach, fostering independence in the person with PWS, and motivating the person by developing their confidence. Creating a routine and empowering people with PWS to take ownership of their progress made continued participation in exercise by the people with PWS more likely.
Conclusion(s): Our findings highlight the importance of developing rapport to facilitate participation in exercise of people with complex disability. Physiotherapist attributes and skills such as adaptability and communication positively influence participation in community-based exercise for people with PWS. Future work will investigate how best to teach these skills to student physiotherapists.
Implications: Physiotherapists supervising a safe and feasible progressive resistance training program can maximise the participation of people with PWS by taking the time to develop a positive rapport. Developing positive rapport was facilitated by therapist adaptability and clear communication. People with PWS were motivated to exercise by developing their confidence and fostering their independence.
Keywords: Disability, Exercise, Rapport
Funding acknowledgements: This study was funded by the Jack Brockhoff Foundation and by the La Trobe University Social Research Assistance Platform.
Purpose: To explore the experiences of physiotherapists delivering community-based progressive resistance training for people with PWS.
Methods: A descriptive study using qualitative methods within a phenomenology theoretical framework was completed, alongside a phase I randomised feasibility trial. Ethics approval was obtained and participants provided written informed consent. Participants were fifteen physiotherapists (13 female) who supervised 14 young adults with PWS to complete a progressive resistance training program, twice per week for 10 weeks at a community gym. Semi-structured interviews with the physiotherapists were audio-recorded and transcribed verbatim. Interview transcripts were checked for accuracy by the physiotherapists. Data were analysed using thematic analysis with an inductive approach and data were managed using NVivo software.
Results: The exercise program supervised by the physiotherapists was feasible and safe. Participants with PWS attended 92% of scheduled sessions and there were no serious adverse events. Development of positive rapport between physiotherapists and people with PWS emerged as the critical factor in facilitating exercise participation. Components of developing positive rapport with a person with PWS included clear communication, adaptability in approach, fostering independence in the person with PWS, and motivating the person by developing their confidence. Creating a routine and empowering people with PWS to take ownership of their progress made continued participation in exercise by the people with PWS more likely.
Conclusion(s): Our findings highlight the importance of developing rapport to facilitate participation in exercise of people with complex disability. Physiotherapist attributes and skills such as adaptability and communication positively influence participation in community-based exercise for people with PWS. Future work will investigate how best to teach these skills to student physiotherapists.
Implications: Physiotherapists supervising a safe and feasible progressive resistance training program can maximise the participation of people with PWS by taking the time to develop a positive rapport. Developing positive rapport was facilitated by therapist adaptability and clear communication. People with PWS were motivated to exercise by developing their confidence and fostering their independence.
Keywords: Disability, Exercise, Rapport
Funding acknowledgements: This study was funded by the Jack Brockhoff Foundation and by the La Trobe University Social Research Assistance Platform.
Topic: Disability & rehabilitation; Intellectual disability; Professional practice: other
Ethics approval required: Yes
Institution: La Trobe University
Ethics committee: Human Ethics Committee
Ethics number: HEC15-115
All authors, affiliations and abstracts have been published as submitted.
