Lessons Learned from Breast Cancer Dragon Boaters Lessons Learned from Breast Cancer Dragon Boaters Presenters: Eleanor Nielsen & Franci Finkelstein

Investigators: Terry Mitchell, Ph.D., C.Psych.Ross Gray, Ph.D., Marg Fitch, Ph.D, & Edmee Franseen, M.Sc., Robert Gebotys, Ph.D.Investigators: Terry Mitchell, Ph.D., C.Psych.Ross Gray, Ph.D., Marg Fitch, Ph.D, & Edmee Franseen, M.Sc., Robert Gebotys, Ph.D. Community Advisory Group: Eleanor Nielsen, Franci Finkelstein, Bonnie Marshall, Donnas Stuart & Doris RossiCommunity Advisory Group: Eleanor Nielsen, Franci Finkelstein, Bonnie Marshall, Donnas Stuart & Doris Rossi Research Coordinator: Kara GriffinResearch Coordinator: Kara Griffin Student Research Assistant: Saba SharihStudent Research Assistant: Saba Sharih Organizational Support: The Ontario Breast Cancer Community Research Initiative &The Centre for Research and Women’s HealthOrganizational Support: The Ontario Breast Cancer Community Research Initiative &The Centre for Research and Women’s Health Collaborators

Dragon Boating Dragon boating is an ancient Chinese sport, dating back more than 2000 years Women with breast cancer began training with Dr. McKenzie in Vancouver, 1996 Vancouver’s Abreast In A Boat team

Methodology/Methods A community-based participatory, A community-based participatory, qualitative and quantitative study qualitative and quantitative study Series of 60 qualitative interviews Series of 60 qualitative interviews Survey development workshop Survey development workshop 408 standardized surveys 408 standardized surveys

Survey: 4 standardized measures were employed 1. QOL Quality of Life 2. MAC Mental Adjustment to Cancer 3. PCL Post Traumatic Stress 4. STS Transcendence Plus a Demographic sheet and a space to answer “ In your own words – the most important thing for people to understand about survivor dragon boating and your health and well-being.”

Survey Findings to Date Dragon boaters had greater burden of illness than most other study samples on breast cancer and PTSD in the literature. Dragon boaters had greater burden of illness than most other study samples on breast cancer and PTSD in the literature. Significantly less post traumatic stress found among the dragon boaters as compared to other studies of women with breast cancer. Significantly less post traumatic stress found among the dragon boaters as compared to other studies of women with breast cancer.

Participants Interview Participants (n=60)Interview Participants (n=60) years in age years in age diagnosed between 2001 and 1974 diagnosed between 2001 and 1974 Survey participants (N= 408)Survey participants (N= 408) 27 – 81 years in age 27 – 81 years in age

Legend Dragon boat teams/participants

Demographics Frequencies: Age Years since diagnosis Years dragon boating Stage Marital Status Recurrence Treatments Intensity of training

Themes Inspiring Hope Awakening to the Self Regaining Control Becoming Strong(er) Living Life to the Fullest.

Inspiring Hope A symbol of hope to those who need it... I think we're a highly visible symbol of successful breast cancer treatments to a lot of people …That is an enormous symbol of hope for people who are newly diagnosed....We're a very, very, visible example of a group of women who are doing something and having fun doing it and living life to the fullest.

Dragons of Hope, Thunder Bay

Regaining Control Chemo sucks you dry. By the time you're finished, you have a shell of your former self... The cancer I can't control that, but this was something I control. I could get stronger and I could be a part of this team. n Warriors of Hope, North Bay

Becoming Strong(er)  And because breast cancer assaults our bodies, it’s the place where the fear lurks with our bodies and so psychologically to feel the power in our bodies is very important…  We’ve gone through what we’ve gone through, and look where we are today. We’re in boats paddling, and paddling hard and paddling strong. And feeling alive and feeling that you can do anything, that you can take on the world. It’s a real sense of accomplishment.

Embracing Life Dragons Abreast, Toronto

Diagnosis & Treatment Shifting Priorities Focus on Self Vehicle Friendship Fun Fitness Support Emotional Strength Physical Strength Reclaim Body Accomplishment Reframe Reoccurence Transcend Living Joyfully Uplifting Belonging Private Experience Public Awareness Hopeful Mission

LESSONS FROM DRAGON BOATERS n B.C. is a chronic disease – support required Living with NED Living well with Cancer n Centering on the Self- gender and health n All in the same boat, sister-ship and silent knowing –The opportunity to understand death as a part of our lives and in turn to embrace life as a gift and to live each day more fully and freely. n Power of community/culture  LIFE-style n Celebration and resistance- –rebirth of facing mortality –shifting the public attitude of cancer as a death sentence of being a vicitim

Living Life to the Fullest Living Life to the Fullest It’s my venue to life, you know. It’s my new gymnastics. It’s my new adventure exhilaration. You know it, it’s my empowerment. I go out there and I paddle my ass off and push myself to the edge and then some. It’s my venue to life, you know. It’s my new gymnastics. It’s my new adventure exhilaration. You know it, it’s my empowerment. I go out there and I paddle my ass off and push myself to the edge and then some.

The Potential of Survivor Dragon Boating Dragon boating is an alternative to short-term interventions that focus on exercise or social support Exercise, social support, and an increased sense of control improve women’s health status and their quality of life Social support and emotional expression mediate anxiety, denial, anger, depression and altered self-image

Conclusion Survivor Dragon Boating is a wholistic post- treatment life-style for breast cancer survivorsSurvivor Dragon Boating is a wholistic post- treatment life-style for breast cancer survivors Dragon Boating powerfully addresses the mind, body and spirit and women’s desire to live life to the fullestDragon Boating powerfully addresses the mind, body and spirit and women’s desire to live life to the fullest

This research is possible through the generous funding of:

76,402 Women in Ontario As of the year 2000 there were Living “With”Breast Cancer

Ontario Breast Cancer Community Research Initiative A partnership of: Canadian Breast Cancer Foundation, Ontario Chapter, (PBRU) The Centre for Research and Women’s Health & Toronto- Sunnybrook Regional Cancer Centre

Psychosocial impact of survivor dragon boating study WHAT ? Assess health impact and quality of life issues of survivor dragon boating. WHY ? * Very little attention has been given to survivorship and post-treatment quality of life issues * Little is known about the psychosocial impact of dragon boating * Little is known about health within illness