Self-management support to handle everyday life with Parkinson´s disease

Sammanfattning: Background: Being diagnosed with Parkinson´s disease (PD) is a life-altering experience. The long-term condition requires continuous adjustments to the everyday life not only of the person affected, but also for care partners. There is still insufficient knowledge on how best to support this process of acceptance and adjustment to encourage self-management.Aims: The aim of this thesis is to enhance the knowledge and understanding of self-management for persons with PD (PwPD) and their care partners. Furthermore, to investigate whether the self-management intervention Swedish National Parkinson School can be used as a tool to support self-management, and how nurses specialised in the care of persons with Parkinson´s disease can tailor their support to encourage self-management in everyday life. Method and design: Both qualitative and quantitative designs and methods were used in the three studies included in this thesis. Participants included a total of 209 persons. Of these, 127 were persons with PD and 75 were care partners. Participants with PD were largely in the middle stages of the disease. The time since diagnosis ranged from less than one year to over 20 years, and most participants had lived with the disease for around five years. Participants were cared for at five separate outpatient clinics, both geriatric and neurological, in three county and two university hospitals across Sweden. Data collection included observations, interviews, self-reported questionnaires and audio-recordings of the National Parkinson School in clinical care. The overall results of this thesis were obtained using a qualitative approach, where the results of the three studies were analysed using qualitative thematic analysis as described by Braun and Clarke (2006).Results: In combining the results of the separate studies through thematic analysis three distinct but interrelated themes were evident. These described the processes and efforts of persons to accept, manage and adjust to everyday life with PD. The theme “A changed reality” involves participants´ descriptions of how life changed after the diagnosis of PD. For many this was a shock, and both the person affected and their care partners experienced a variety of emotions such as anger, denial and hopelessness. It changed their personal identities, their perception of themselves as individuals and as a couple. They worried about what the future would hold, and the uncertainty was hard to accept and handle. One strategy for processing and beginning to acknowledge the new situation involved speaking openly about the diagnosis. The second theme “Finding a new path”, involves a description of how, after accepting or at least acknowledging, their new reality, participants started to find ways of managing the impact of PD on everyday life, incorporating it into their current life and identity. Many felt new knowledge was needed and turned to books and websites on PD. An intervention which was appreciated in terms of providing tools for self-observation and self-knowledge was the Swedish National Parkinson School. Participants later used these techniques to communicate and observe symptoms and healthcare needs. Being an active participant in life and performing activities such as physical exercise or other activities they enjoyed were also used as a strategy to feel satisfaction in life. Participants frequently worked out self-care and compensatory strategies to handle everyday tasks. Another strategy they found comforting and helpful involved retaining a positive mind-set and believing that a good future lay ahead. In the third category “The companions”, the participants described self-management in everyday life as a task they performed together. Management of PD was considered the shared responsibility of the person affected and the care partner, but was also influenced by others such as family members and close friends. The Swedish National Parkinson School provided knowledge as a form of common ground for the person affected and the care partner. During the Swedish National Parkinson School, the social interaction involved in exchanging experiences and feeling support from others in the same situation was considered helpful and was much appreciated.Conclusions: Management of PD in everyday life involves both the person affected and the care partner. After the initial emotional reactions, alongside feelings of lost identity and an altered life, persons started to look to the future and were ready to find ways of handling the changed conditions of their everyday lives. Persons with PD and their care partners were now willing to learn more about PD and to find tools and strategies to help them manage its impact on their everyday lives. During this phase, they appreciated the support of the Swedish National Parkinson School intervention. In the intervention, they would meet others in the same situation to find support and exchange experiences. They also turn to healthcare for support in the process of self-management in everyday life. Nurses working specifically to support PwPD and their CP will need to tailor support taking into account the disease trajectory as well as the psychological processes involved in accepting and adjusting to PD to best fit the unique needs and wishes of every person with PD and their care partner.