Fatigue is common, but under-recognized in Parkinson's disease (PD), with limited treatment options. The aim of this study is to explore the experience of people with PD (PwPD) regarding content and delivery of the individual Packer Managing Fatigue program. This mixed-method study (n = 12) was conducted concurrently with a pilot randomized controlled trial. Data were collected using questionnaires, interviews, and focus groups. Five themes emerged: the program is helpful; the program has strengths; areas for improvement; individual online delivery is feasible; and more support from occupational therapist would be helpful. Quantitative findings confirmed feasibility with high ratings on questionnaires and confidence to use learned strategies. The findings inform future implementation of the Packer Managing Fatigue program and contribute to understanding the needs of PwPD. Future studies might explore program's effectiveness as stand-alone treatment or in combination with other approaches. Tailoring fatigue programs to PwPD's unique needs and characteristics of PD fatigue is suggested.
Trial registration: ClinicalTrials.gov NCT04267107.
Keywords: Parkinson’s disease; intervention; mixed methods; occupational performance; occupational therapy.
Managing Fatigue in People With Parkinson’s DiseasePeople with Parkinson’s disease list fatigue as one of their three most disabling symptoms. They describe fatigue as a feeling of extreme tiredness that can make it difficult to perform everyday activities. We explored the perspective of people with Parkinson’s disease regarding the individual version of the Packer Managing Fatigue program. The study used video calls and included 12 people with Parkinson’s disease. The program proved helpful and feasible for participants. They learned skills to manage their fatigue, such as prioritizing tasks and balancing rest and activity, and were confident in using them. These findings provide preliminary evidence that could be used by occupational therapists to help people with Parkinson’s disease manage the negative impact of fatigue on their lives. However, reseaech studies, with more people, are needed to be sure the program is effective.