Qualitative study of 17 interviews plus cohort analysis identifies five coping styles (taking action, distancing, mental solutions, social support, coming to terms) and 28 strategies in young-onset Parkinson’s disease, with greater use of ‘distancing’ linked to higher psychological distress.

Provides insight into psychosocial coping patterns that could guide supportive behavioral interventions and trial endpoints but has limited direct relevance to molecular mechanisms or drug discovery.

People with young onset Parkinson's disease (YOPD) encounter unique challenges. Coping is therefore vitally important to effectively manage stressors. We thematically analyzed 17 semi-structured interviews regarding coping strategies. In cohort data (YOPD n = 74, late onset PD n = 214), we analyzed the frequency of coping styles. Most people with YOPD used a mixture of five styles: (1) taking action, (2) distancing, (3) mental solutions, (4) social support, and (5) coming to terms. Within these styles, we identified 28 different strategies, and described how participants apply these in a flexible manner. We found an association between a higher use of coping through distancing and psychological distress and used qualitative interview data to explore a possible bidirectional relationship. This study offers a first indication of how people cope with YOPD. The observed association between distancing and distress should be studied further. If found to be causal, coping flexibility might become a potential interventional target.