Insights for Healthcare Professionals on Patient Experience of Research Participation

There is limited evidence about why patients might be motivated to share their personal stories about their illness experiences through research initiatives and the impact of participation. Ethics committees and healthcare professionals are sometimes reluctant to support research that involves in-depth qualitative interviews given concerns about vulnerability and/or potential harms. Two studies were undertaken, in Germany and in Canada, to explore participant experiences of participating in qualitative research. The research teams are involved in the DIPEx International collaboration – using common methods to collect and share individual narratives on an evidence-based web site. In Germany, 43 people, who had been interviewed about either diabetes or chronic pain, were interviewed again about the reasons why they chose to disclose their illness experiences. In Canada, 30 people, who had been interviewed about their family caregiving experiences, completed a survey asking about their experiences of the interview. In both studies, participants were asked about their research participation, perceived benefits, what was difficult and what about the research process could have been better. These studies were conducted independently, using different methods and within different cultural contexts, yet there were strikingly similar results. Participants in both countries spoke about their motivation to help others with similar conditions cope with their situation and to help healthcare professionals as well as decision makers understand their situation to improve care. Participants were generally grateful for the opportunity to share their story, and although they acknowledged difficult moments in reliving some of their experiences during their original interviews, no one in either study regretted participating. This paper will contribute to discussions about how healthcare professionals, including members of ethics committees, view participation in qualitative research. It may also contribute to discussions between researchers and clinical therapists about the value and meaning for patients to participate in qualitative research studies.