Challenges & strategies for conducting qualitative research with persons diagnosed with rare movement disorders

Abstract

Unique features of Huntington’s disease and young-onset Parkinson’s disease, both neurodegenerative movement disorders, can pose challenges for conducting qualitative research. From the perspectives of two doctoral candidates conducting research with these groups, a number of challenges are presented and discussed alongside strategies for managing such challenges. Challenges are organized according to physical (e.g., movement), psychological (e.g., cognition) and social (e.g., speech impairment) aspects of these diseases. The strategies presented emphasize the importance of ethical reasoning in situations that can arise, as well as the relationships developed with the research participants. Author transparency and ethical reasoning are both important in conducting quality qualitative research. It is hoped that presenting these challenges and strategies will promote greater dialogue on such issues, and help researchers enable more people with rare movement disorders to participate in qualitative research.