Participation in leisure benefits physical, psychological and social health but we barely understand the choices made by people with Parkinson's (PwP). We aimed to identify factors contributing to leisure maintenance or cessation, and suggest ways of optimising beneficial continuation.
Following a survey of leisure participation, motivators and deterrents (224 PwP recruited via a clinic and 34 branches of Parkinson's UK) we purposely selected 10 PwP who had abandoned or were considering abandoning a leisure activity to interview at home. We audiotaped semi-structured interviews with 5 men and 5 women (aged 63 to 81), four living alone; three spouses contributed. Two researchers independently analysed transcripts, coding and categorising content: building on themes derived from the survey, they discussed and recoded transcripts before agreeing final categories and emergent themes.
The dominant theme was that, while physical aspects of Parkinson's (notably balance, mobility and fatigue) influenced leisure participation, psychological features appeared more pervasive. Interviewees' attitudes to their progressive, fluctuating condition (e.g. ‘My confidence went before my ability’) and underlying traits such as determination, flexibility and optimism (‘You are what you let yourself be’) appeared central to coping (generally) and participating in leisure (specifically). Other key determinants of participation were their attitudes to change (e.g. ‘So afraid of making a fool of myself’), the suspected attitudes of others (‘Everybody comes and helps me - I hate that’) and isolation/loneliness (‘I get bored hearing my own voice’).
To help PwP reap the multiple benefits of leisure and optimise their perceived wellbeing, health professionals can promote leisure activity. Specifically they can assist PwP to (1) manage and understand their condition, (2) identify and access activities meeting their needs and (3) set realistic goals, tailoring the timing, amount and intensity of activity to their ability.