On the road to life satisfaction for person's with Parkinson's disease

Sammanfattning: Parkinson’s disease (PD) is one of the most common neurodegenerative disorders. The motor and non-motor symptoms of PD lead to a number of consequences in everyday life for persons with PD (PwPD). PwPD continuously need to adapt to their new life situation and despite medical treatment, the impact of PD on everyday life is inevitable and can lead to a lower level of life satisfaction (LS). LS is an overarching goal for medical rehabilitation and has been suggested as being an ultimate goal for PD care. However, the knowledge that is needed for developing rehabilitation interventions aiming at increasing LS for PwPD is very limited.The overall aim of this thesis was to increase the knowledge about LS for PwPD. The specific aims were to evaluate the psychometric properties of a rating scale for assessing LS, to describe LS and evaluate associated factors, to gain an in-depth understanding of the meaning of LS and adaptation, and to explore the process of the change and LS when living with PD. A methodological pluralism was used to gain a broad, holistic and greater understanding of LS. In Study I, a psychometric evaluation of the Satisfaction With Life Scale (SWLS) was performed in a sample of 97 PwPD. The SWLS was then used in Study II to assess LS in 80 PwPD, and associated factors were analysed with hierarchical multi-regression analysis. Thirteen PwPD participated in in-depth interviews in Studies III and IV and the data were analysed with two different qualitative methods (phenomenological hermeneutics and grounded theory) to explore the meaning of LS and adaptation, as well as to describe the process of change and LS when living with PD.The results showed that the SWLS has a high level of data completeness, scaling assumptions and targeting within the recommended criteria, an acceptable internal consistency and reasonably acceptable test-retest reliability. The mean value of SWLS was just above the midpoint between satisfied and dissatisfied with life. The salutogenic concept Sense of Coherence (SOC) had the strongest association with LS. PwPD describe an ongoing process of change when either adapting through acceptance or struggling in resistance towards the disease and its consequences. Acceptance makes adaptation and a high level of LS possible. The process of change for PwPD consists of four steps where the persons actively work to comprehend, accept, adapt, and balance their life situation, when striving for social belonging, which is a prerequisite for LS.In conclusion, the SWLS is a psychometrically sound tool to assess LS in PwPD. Persons with mild to moderate PD are generally satisfied with life, but there seems to be a great variation in the level of LS for PwPD. Persons with a strong SOC have a higher level of LS. Adapting to PD is a process of change characterised by either acceptance or resistance. Acceptance makes a high level of LS possible, while resistance constituted a behavioural barrier to both adaptation and LS. By continuously working to comprehend, accept, adapt, and balance the new life situation, PwPD strive for social belonging, which in turn increases their LS. Healthcare professionals can support PwPD to achieve and maintain a high level of LS over time by understanding this process.