Improving self‐management for persons with Parkinson's disease through education focusing on management of daily life: Patients’ and relatives’ experience of the Swedish National Parkinson School

摘要

Abstract Aims and objective To identify and describe experiences valuable for?managing daily life after participation in the NPS self‐management intervention. The second part was to explore the applicability of the Self‐ and family management framework by Grey and colleagues for persons with Parkinson's Disease and their relatives. Background The impact of PD is evident on the lives of both patients and relatives. The National Parkinson School (NPS) is a Swedish self‐management programme designed for patients and relatives, aiming at teaching strategies helpful for the ability of self‐management, in order to promote life satisfaction. Design Qualitative explorative with inductive and deductive analysis. Methods Five group discussions with NPS participants were audio‐recorded. Verbatim transcriptions were analysed inductively with thematic analysis according to Braun and Clarke, and the findings were then applied deductively to the existing model for patients with chronic disease. Results Through the first step of inductive analysis, three themes capturing the meaning, value and experience of being a participant at the NPS were identified: exchanging experiences and feeling support, adjustment and acceptance of PD for managing daily life and promoting life satisfaction. The deductive analysis applied the inductive findings to the Self‐ and family management framework of chronically ill to explore the fit to persons with PD and relatives attending the NPS programme. Conclusions The NPS programme is a promising approach for helping persons with PD and their relatives to achieve better self‐management of disease and improved life satisfaction. Further evaluations of programme outcomes in clinical practice are warranted. Relevance of clinical practice Self‐management programmes like the NPS is a promising approach in facilitating a positive mindset and outlook on life and gain knowledge to understand, adapt and handle chronic disease, such as PD, better.