People living with Parkinson's disease deal with symptoms and impairments due to the progression of the disease. This affects the individual's ability to perform and participate in everyday activities and may lead to reduced life satisfaction. Life satisfaction is dependent on how the individual manages to adapt to their new life situation.
Despite that life satisfaction is an important goal in the rehabilitation for people with lifelong diseases, there is still a gap in knowledge about how this is affected in people with Parkinson's disease. This knowledge is needed to develop rehabilitation interventions to increase and maintain a high life satisfaction despite the disease.
We identified two quite distinct groups, one where the participants adapted through acceptance, and another group where the participants struggled to resist the disease and its consequences.
To increase the knowledge about life satisfaction and adaptation in people in the early stages of the disease, 13 Parkinson patients were in-depth interviewed. The mean age of the participants was 54 years and the mean time since diagnosis was 3 years. The aim was to gain an understanding of the inner perspectives of the persons living with Parkinson's disease.
The results were presented in eight themes, describing different situations in everyday life with Parkinson's disease. These themes illustrate the meaning of life satisfaction and adaptation, which is affected by acceptance or resistance. Acceptance facilitates adaptation and life satisfaction, whereas resistance constitutes a behavioral barrier to both adaptation and life satisfaction. This new knowledge is a starting point for rehabilitation interventions aiming to enable adaptation and life satisfaction.
The interviews were analyzed with a qualitative method (hermeneutic phenomenology) to explore the importance of life satisfaction and adaptation. This method allows for questions to be open to capture unexpected aspects in research areas that are difficult to approach with closed-ended questions and various questionnaires.
- We saw that the participants were in an adaptation process to their new life situation with Parkinson's disease. We identified two quite distinct groups, one where the participants adapted through acceptance, and another group where the participants struggled to resist the disease and its consequences, explains Lina Rosengren, physician in rehabilitation medicine, Ph.D student in the research group rehabilitation medicine and the first author of the study.
However, to support persons through a successful adaptation process, further knowledge about the individual process of change is needed.
- In the next study, which will be the last one in my doctoral thesis, we want to understand how healthcare can support people with Parkinson's disease in their adaptation process so that they can achieve high life satisfaction over time. Therefore, we will explore the process of change in patients with Parkinson’s disease, concludes Lina Rosengren.