How do people live life successfully with Parkinson's disease?

Abstract

Aims and objectives: The aim of this paper is to explore how people live life successfully with Parkinson's disease and what contributed to the level of success.

Objectives: To examine the level of success as defined by people with Parkinson's disease. To find what contributed to the level of success.

Background: Self-care support has gained importance for supporting people with their chronic diseases including Parkinson's disease. Although self-care and life adjustments can improve patients' general well-being, it is unclear which approaches best facilitate positive adjustments to illness.

Design: Semi-structured interviews with participants with Parkinson's disease.

Methods: Eight participants living with Parkinson's disease for 2-16 years were recruited from a Parkinson's disease voluntary group in the UK. Interviews covered their perceived level of success and the factors which they perceived led to that success. Thematic analysis was used to analyse the data.

Results: Participants rated a high level of success in living with Parkinson's disease with an average personal rating 75/100 despite facing difficulties. Successful living was perceived to have taken place when people were either (1) able to return to their usual state of health or (2) considered themselves to be stable within a new/readjusted state of health. Aspects which were perceived to support positive psychosocial adjustment included a positive mindset, determination, acceptance of new challenges and family support.

Conclusion: Maintaining usual life and physical ability is the major concern among the people with Parkinson's disease. It would be helpful for health care professionals to identify what constitutes a 'usual' life for that person and to support them to develop a positive mindset and acceptance of new challenges, drawing on the determination of the person as well as any available family support.

Relevance to clinical practice: In supporting self-care, it is helpful to gain information about the subjective experience of living with Parkinson's disease including their perceived level of success at the time and what led to that perceived success for that person.

Keywords: Parkinson's disease; assessment; psychosocial adjustment; quality of care; self-management; successful living.