Balancing feeling 'prepared' without feeling 'devoured': A qualitative study of self-care from the perspective of self-empowered persons living with Parkinson's disease in Sweden.

INTRODUCTION: Parkinson's Disease (PD) is a complex neurodegenerative disease resulting in a wide range of motor and nonmotor symptoms for which the treatment regimen is often complex. People with Parkinson's (PwP) spend time daily on self-care practices including self-tracking signs and symptoms or seeking disease-specific knowledge. Research suggests self-care interventions yield promising care and health outputs for PwP, yet most research focuses on the provider perspective rather than that of those conducting the self-care. This study explores the meaning of self-care, disease-specific knowledge, and self-tracking from the perspective of PwP in Sweden. METHODS: Qualitative data from three data sets were analyzed and compared using qualitative content analysis: one focus group on self-care (n = 14), one free-text survey on disease-specific knowledge (n = 197) and one free-text survey on self-tracking (n = 33). FINDINGS: The analysis resulted in three categories: illness-related tasks, internal resources and external resources. Illness-related tasks describe various tasks PwP carry out in self-care, including lifestyle choices, treatments, and self-tracking. Internal resources include personal knowledge/skills as well as mindsets which could facilitate or challenge completing these tasks. Finally, external resources include other PwP, literature, clinicians and other sources of disease-specific knowledge. Self-care was found to fluctuate between beneficial and burdensome depending on such resources. CONCLUSIONS: In conclusion, self-care needs to be acknowledged and discussed more often in PD and other complex conditions. Future self-care interventions should consider self-tracking and disease-specific knowledge as well as internal and external resources in their design and implementation. PATIENT OR PUBLIC CONTRIBUTION: A researcher with PD was actively involved in all phases of the research: study design, data collection and analysis, and preparing the manuscript.

A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research.

BACKGROUND: Partnership research practices involving various stakeholder groups are gaining ground. Yet, the research community is still exploring how to effectively coproduce research together. This study describes (a) key programme developments in the creation of a 6-year partnership research programme in Sweden, and (b) explores the hopes, expectations, and experiences of patient innovators (i.e., individuals with lived experience as patients or caregivers who drive health innovations) and researchers involved in the programme during the first years. METHODS: We conducted a prospective longitudinal qualitative study spanning the first 2 years of the programme. Data consisted of meeting protocols and interviews with 14 researchers and 6 patient innovators; 39 interviews were carried out in three evenly-spaced rounds. We identified significant events and discussion themes in the meeting protocols and analyzed the interviews using thematic analysis, applying a cross-sectional recurrent approach to track changes over time. FINDINGS: Meeting protocols revealed how several partnership practices (e.g., programme management team, task forces, role description document) were cocreated, supporting the sharing of power and responsibilities among programme members. Based on the analysis of interviews, we created three themes: (1) paving the path to a better tomorrow, reflecting programme members' high expectations; (2) going on a road trip together, reflecting experiences of finding new roles and learning how to cocreate; (3) finding the tempo: from talking to doing, reflecting experiences of managing challenges and becoming productive as a team. CONCLUSIONS: Our findings suggest that sharing, respecting, and acknowledging each other's experiences and concerns helps build mutual trust and shape partnership practices. High expectations beyond research productivity suggest that we need to consider outcomes at different levels, from the individual to society, when evaluating the impact of partnership research. PATIENT OR PUBLIC CONTRIBUTION: The research team included members with formal experiences as researchers and members with lived experiences of being a patient or informal caregiver. One patient innovator coauthored this paper and contributed to all aspects of the research, including the design of the study; production of data (as interviewee); interpretation of findings; and drafting the manuscript.