Social Belonging as the Main Concern for Achieving Life Satisfaction When Adapting to Parkinson’s Disease
Abstract
:1. Introduction
2. Methods
2.1. Research Design
2.2. Participant Selection
- Convenience sampling. Adults with PD from the regional patient organization in the south of Sweden were recruited in order to identify the scope, major components, and trajectory of the overall process. After five interviews we moved on to the next sampling step.
- Purposeful sampling. During this step we wished to maximize the variation of meaning. To obtain a nationwide distribution, we approached the national patient organization for PwPD. These five new interviews revealed in a more in-depth manner how the participants themselves were woven into the emerging phenomenon of social belonging. They spoke for themselves and a conceptual scheme, as well as the trajectory identified during the convenience sampling, emerged more clearly. At this stage it became evident that the process starts with a strive to comprehend and that comprehension is the foundation for acceptance that enables adaptation, resulting in the act of balancing.
- Theoretical sampling. First, we recoded the data in accordance with the identified trajectory and illuminated critical junctures, i.e., the points between the stages. At this stage it was clear that the process went back and forth driven by uncertainty and coherence. We then let the emerging categories and our increasing understanding direct the final sampling. We therefore posed targeted questions to three more participants concerning the meaning of each concept in order to enable grounded definitions as well as clarifying the linkages between the categories. No true negative cases, i.e., participants who did not respond to the emerging categories in the anticipated way, were identified.
- Validation interviews. Four validation interviews were performed, where we worked deductively and asked the participants if the analysis made sense to them and if there was a match between their experiences and the emerging theoretical model. The model was confirmed, and the participants assisted us in explaining the loop of coherence and uncertainty. Finally, the validation interviews also clarified the link between social belonging and LS.
2.3. Data Collection
2.4. Data Analysis
3. Results
“Life is good even if you’re not always functioning.”(Validation interview no 1)
3.1. Comprehend
“You were sad for a couple of days, thinking it is not fair, but I don’t know… I’m a rather practical person and started to find a job and was quite busy with that. I read everything I found and learned that I won’t die from PD. Not like in other situations in life, e.g., a diving accident where it was close… A couple of times I have faced death in my life so that was my first question: How long do you live with Parkinson’s disease?”(Interview no 7)
3.2. Accept
“Before this, you took everything for granted thinking you have your whole life to do what you want, but now I focus more on the small things… I usually say that you should not think of what you can’t do, but think of what you can do. Then you feel better.”(Interview no 3)
“In the beginning I used to think that I was not going to accept this [Parkinson’s disease] and this should not beat me… but then I realized that accepting that you have a disease does not mean that you have given up… no I have not given up, I am going to continue to fight to be able to manage it.”(Interview no 5)
3.3. Adapt
“I have adapted in numerous ways. I started to join a couple of Facebook groups and I read some blogs. I have really tried hard to comprehend what the disease is all about and the more I understand I realize that it is to a large extent up to me. The things I can do to assist my body to be as healthy as possible regardless of the diagnosis or how it is labelled. It could have been burn out-syndrome or whatever. The thing is what I do to give my body the best possible conditions. It is about my sleep, my diet, my way of dealing with stress, meditation, and so on. It has been a long journey and very interesting to learn about the disease.”(Interview no 9)
3.4. Balance
“I go to the dance class where you are in an environment where healthy people also dance. And we can be there, dancing on our own conditions. Perhaps if you had been to a different place it might not have been such fun. But to be in this context and atmosphere has been very positive because everybody is included and you start by sitting on a chair doing different exercises. Also, the ones in wheelchair or with a walker can join the group and feel the community. And after the dance class, we drink coffee and it is very cozy before everybody goes home to their place. The dance brings so much joy.”(Interview no 3)
4. Discussion
4.1. Reflection on the Findings
4.2. Clinical Implication
4.3. Methodological Considerations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
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Rosengren, L.; Forsberg, A.; Brogårdh, C.; Lexell, J. Social Belonging as the Main Concern for Achieving Life Satisfaction When Adapting to Parkinson’s Disease. Int. J. Environ. Res. Public Health 2021, 18, 8653. https://doi.org/10.3390/ijerph18168653
Rosengren L, Forsberg A, Brogårdh C, Lexell J. Social Belonging as the Main Concern for Achieving Life Satisfaction When Adapting to Parkinson’s Disease. International Journal of Environmental Research and Public Health. 2021; 18(16):8653. https://doi.org/10.3390/ijerph18168653
Chicago/Turabian StyleRosengren, Lina, Anna Forsberg, Christina Brogårdh, and Jan Lexell. 2021. "Social Belonging as the Main Concern for Achieving Life Satisfaction When Adapting to Parkinson’s Disease" International Journal of Environmental Research and Public Health 18, no. 16: 8653. https://doi.org/10.3390/ijerph18168653