Lessons Learned from Lessons Learned from Breast Cancer Dragon Breast Cancer Dragon

BoatersBoaters

Presenters: Presenters: Eleanor Nielsen & Franci FinkelsteinEleanor Nielsen & Franci Finkelstein

• Investigators:Investigators: Terry Mitchell, Ph.D., C.Psych.Ross Gray, Terry Mitchell, Ph.D., C.Psych.Ross Gray, Ph.D., Marg Fitch, Ph.D, & Edmee Franseen, M.Sc., Ph.D., Marg Fitch, Ph.D, & Edmee Franseen, M.Sc., Robert Gebotys, Ph.D.Robert Gebotys, Ph.D.

• Community Advisory Group:Community Advisory Group: Eleanor Nielsen, Franci Eleanor Nielsen, Franci Finkelstein, Bonnie Marshall, Donnas Stuart & Doris Finkelstein, Bonnie Marshall, Donnas Stuart & Doris RossiRossi

• Research Coordinator:Research Coordinator: Kara GriffinKara Griffin• Student Research Assistant:Student Research Assistant: Saba Sharih Saba Sharih• Organizational Support:Organizational Support: The Ontario Breast Cancer The Ontario Breast Cancer

Community Research Initiative &The Centre for Community Research Initiative &The Centre for Research and Women’s HealthResearch and Women’s Health

CollaboratorsCollaborators

Dragon BoatingDragon Boating

Dragon boating is an Dragon boating is an ancient Chinese sport, ancient Chinese sport, dating back more dating back more than 2000 years than 2000 years

Women with breast Women with breast cancer began training cancer began training with Dr. McKenzie in with Dr. McKenzie in Vancouver, 1996Vancouver, 1996

Vancouver’s Abreast In A Boat team

Methodology/MethodsMethodology/Methods

• A community-based participatory, A community-based participatory,

qualitative and quantitative studyqualitative and quantitative study

• Series of 60 qualitative interviewsSeries of 60 qualitative interviews

• Survey development workshopSurvey development workshop

• 408 standardized surveys408 standardized surveys

Survey: 4 standardized Survey: 4 standardized measures were employed measures were employed

1.1. QOL QOL Quality of LifeQuality of Life2.2. MAC MAC Mental Adjustment to CancerMental Adjustment to Cancer3.3. PCL PCL Post Traumatic StressPost Traumatic Stress4.4. STS STS TranscendenceTranscendence

PlusPlus a Demographic sheet and a space a Demographic sheet and a space to answer “ to answer “ In your own words – the most In your own words – the most important thing for people to understand important thing for people to understand about survivor dragon boating and your about survivor dragon boating and your health and well-beinghealth and well-being.”.”

Survey Findings to DateSurvey Findings to Date

• Dragon boaters had greater burden of illness Dragon boaters had greater burden of illness than most other study samples on breast than most other study samples on breast cancer and PTSD in the literature. cancer and PTSD in the literature.

• Significantly less post traumatic stress Significantly less post traumatic stress found among the dragon boaters as found among the dragon boaters as compared to other studies of women with compared to other studies of women with breast cancer.breast cancer.

ParticipantsParticipants

• Interview Participants (n=60)Interview Participants (n=60)• 34 -78 years in age 34 -78 years in age • diagnosed between 2001 and diagnosed between 2001 and

19741974

• Survey participants (N= 408) Survey participants (N= 408) • 27 – 81 years in age27 – 81 years in age

Legend

Dragon boat teams/participants

DemographicsDemographicsFrequencies:

Age

Years since diagnosis

Years dragon boating

Stage

Marital Status

Recurrence

Treatments

Intensity of training

ThemesThemes

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

Inspiring HopeInspiring Hope

A symbol of hope to those who need it... I think we're aA symbol of hope to those who need it... I think we're a

highly visible symbol of successful breast cancer highly visible symbol of successful breast cancer treatments treatments

to a lot of people …That is an enormous symbol of hope to a lot of people …That is an enormous symbol of hope for for

people who are newly diagnosed...people who are newly diagnosed.....We're a very, very, We're a very, very,

visible example of a group of women who are doingvisible example of a group of women who are doing

something and having fun doing it and living lifesomething and having fun doing it and living life

to the fullest.to the fullest.

Dragons of Hope, Thunder BayDragons of Hope, Thunder Bay

Awakening to the Self

We laugh a lot. We kid. We do things together that wewould never do alone… We don’t feel ashamed of our bodieswhen they’re scarred. We talk about our scars. We talkabout the damage that’s been done to our bodies. I can kidabout it. "Hooters over the hull if you have them". Youknow silly things like that get said.

Regaining ControlRegaining Control

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

Warriors of Hope, Warriors of Hope, North BayNorth Bay

Becoming Strong(er) Becoming Strong(er)

And because breast cancer assaults our bodies, it’s the And because breast cancer assaults our bodies, it’s the place where the fear lurks with our bodies and so place where the fear lurks with our bodies and so psychologically to feel the power in our bodies is very psychologically to feel the power in our bodies is very important…important…

We’ve gone through what we’ve gone through, and We’ve gone through what we’ve gone through, and look where we are today. We’re in boats paddling, and look where we are today. We’re in boats paddling, and paddling hard and paddling strong. And feeling alive paddling hard and paddling strong. And feeling alive and feeling that you can do anything, that you can take and feeling that you can do anything, that you can take on the world. It’s a real sense of accomplishment.on the world. It’s a real sense of accomplishment.

Embracing LifeEmbracing Life

Dragons Abreast, Toronto

Diagnosis & Treatment

Shifting Prioriti

es

Focus on

Self

Vehicle

Friendship

Fun

Fitness

Support

Emotional Strength

PhysicalStrength

Reclaim Body Accomplishme

nt

Reframe Reoccuren

ce

Transcend

Living Joyfully

UpliftingBelongin

g

Private Experience

Public Awareness

Hopeful Mission

LESSONS FROM DRAGON BOATERSLESSONS FROM DRAGON BOATERS

B.C. is a chronic disease – support requiredB.C. is a chronic disease – support requiredLiving with NEDLiving with NEDLiving well with CancerLiving well with Cancer

Centering on the Self- gender and healthCentering on the Self- gender and health All in the same boat, sister-ship and silent knowingAll in the same boat, sister-ship and silent knowing

– The opportunity to understand death as a part of our lives and in 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 turn to embrace life as a gift and to live each day more fully and freely.freely.

Power of community/culturePower of community/culture LIFE-style LIFE-style Celebration and resistance-Celebration and resistance-

– rebirth of facing mortalityrebirth of facing mortality– shifting the public attitude of cancer as a death sentence of shifting the public attitude of cancer as a death sentence of

being a vicitimbeing a vicitim

Living Life to the FullestLiving Life to the Fullest

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

The Potential of Survivor Dragon BoatingThe Potential of Survivor Dragon Boating

• Dragon boating is an Dragon boating is an alternative to short-term alternative to short-term interventions that focus on interventions that focus on exercise or social supportexercise or social support

• Exercise, social support, Exercise, social support, and an increased sense of and an increased sense of control improve women’s control improve women’s health status and their health status and their quality of life quality of life

• Social support and Social support and emotional expression emotional expression mediate anxiety, denial, mediate anxiety, denial, anger, depression and anger, depression and altered self-imagealtered self-image

ConclusionConclusion

• Survivor Dragon Boating is a wholistic post-Survivor Dragon Boating is a wholistic post-treatment treatment life-stylelife-style for breast cancer for breast cancer survivorssurvivors

• Dragon Boating powerfully addresses the Dragon Boating powerfully addresses the mind, body and spirit and women’s desire mind, body and spirit and women’s desire to live life to the fullestto live life to the fullest

This research is possible through the This research is possible through the generous funding of:generous funding of:

76,402Women in Ontario

As of the year 2000 there were

Living “With”Breast Cancer

Ontario Breast Cancer Ontario Breast Cancer Community Research InitiativeCommunity Research Initiative

A partnership of: A partnership of: Canadian Breast Cancer Foundation, Ontario Chapter , Canadian Breast Cancer Foundation, Ontario Chapter , (PBRU) The Centre for Research and Women’s Health (PBRU) The Centre for Research and Women’s Health

& Toronto-Sunnybrook Regional Cancer Centre & Toronto-Sunnybrook Regional Cancer Centre

Psychosocial impact of Psychosocial impact of survivor dragon boating study survivor dragon boating study

WHAT ?WHAT ?

Assess health impact and quality of life Assess health impact and quality of life issues of survivor dragon boating.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