Participatory health research involves a wide spectrum of participation from the population of study. We describe the participatory research processes of a large mixed method study on the psychosocial impact of dragon boating in individuals with breast cancer. In particular, we discuss the involvement of a Community Advisory Group (consisting of five breast cancer patients/survivors) in the development of the research study, data collection and analysis, and dissemination of the study results. We also outline the elements of a research workshop, in which 13 breast cancer patients/survivors were involved in the development of a provincial survey for the study. The purpose of this article is to share our experience of engaging cancer patients/survivors in a participatory research study. We discuss the value-based elements of participatory research (power sharing, voice and respect, reciprocity, and mutual benefit), and provide a case-based example of how these participatory elements were employed to potentially increase the validity of the survey instrument, to enhance the ethics of working with a cancer population, and ultimately contributed to a high survey response rate.
The authors investigated the psychosocial impact of dragon boat participation on women who have been treated for breast cancer. Open-ended qualitative interviews were completed by 10 new members recruited from two breast cancer survivor dragon boat teams. Our findings indicate that the women's experience of survivor dragon boating surpassed their expectations and offered them hope and increased strength and the ability to regain control of their lives. Key themes emerging from the in-depth interviews that encapsulate the experiences of women in their first season of dragon boating follow: awakening of the self, common bond, regaining control, being uplifted, and transcending the fear of death. The interview data support the emerging hypothesis that dragon boating is a vehicle for improving women's wellness and post-treatment quality of life.
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