Quality of life and living with Parkinson’s disease: a qualitative exploration within an Irish context

Abstract

Abstract Background Parkinson’s disease is incurable, and the rate of progression varies meaning that people face a long future with an unpredictable condition that can significantly influence their quality of life. To date, much of the international research has focused on measuring and describing quality of life in Parkinson’s from a quantitative perspective. Given its multidimensional nature, the present study aims to explore the concept using a qualitative approach so factors influencing self-reported quality of life can be understood in greater depth. Methods Using a qualitative descriptive approach, people with Parkinson’s disease who were survey participants in the first phase of a mixed methods study exploring factors influencing health-related quality of life were invited to participate in semi-structured interviews. Eighteen participants with high (n = 6), average (n = 6), and low (n = 6) health-related quality of life (PDQ-39 SI scores) were purposively invited to participate in this study. Audio recordings were transcribed and thematically analysed using Braun and Clarke’s steps (familiarisation, generating initial codes, searching for themes, reviewing, defining, naming themes, and producing the report). Results Thematic analysis revealed four overarching themes; ‘Living an interrupted life,’ ‘Striving for ‘I’ in independence,’ ‘Unravelling identities, roles, and relationships’ and ‘Reconfiguring life’. These themes illuminated participants’ experiences of living with Parkinson’s disease and what influenced their overall quality of life. Conclusions These findings add to the international literature by helping to achieve a deeper understanding of what it means to live with Parkinson’s disease and how it influences quality of life. Participants experienced a range of fluctuating, and interconnected motor and non-motor symptoms. This finding draws attention to the impact of the often-unpredictable nature of the condition on the physical, functional, psychological, social, and spiritual dimensions of life. Quality of life was positively influenced by perceptions of independence and negative feelings of dependence. Being independent was associated with freedom to plan, autonomy of choice, and freedom from feeling stressed, strained, or fearful. Having a positive outlook, using problem-focused strategies, and participating in hobbies, holidays, work, and involvement in local community committees were perceived positively across interviews as accentuating social dimensions of life. Resourcing self-management strategies, advanced nursing roles, and developing personalised models of community support may assist healthcare professionals in meeting the unique needs of people with Parkinson’s disease thereby supporting quality of life.

Keywords

• Parkinson disease
• Quality of life
• Experience
• Qualitative