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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.

Keywords

Huntington’s Disease, Parkinson’s Disease, Young Adults, Interviews, Focus Groups, Qualitative Research Methods

Acknowledgements

Both authors contributed equally to this manuscript. The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Acknowledgements: We thank Dr. Andrew Johnson, Dr. Debbie Laliberte Rudman, and Dr. Mary Jenkins for their thoughtful critiques of this manuscript.

Funding: KAL received a grant from the Health & Rehabilitation Sciences program at the University of Western Ontario to conduct the research discussed in this paper. MJR received a Doctoral Research Award from the Canadian Institutes of Health Research, which 18 The Qualitative Report 2014 is partially funded by the Parkinson Society of Canada, to conduct the research discussed in this paper.

Publication Date

4-21-2014

Creative Commons License

Creative Commons Attribution-Noncommercial 4.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 License.

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