Cancer on the Margins

by Nelson, Jennifer J.; Gould, Judy; Keller-olaman, Sue

• ISBN13: 9780802091697
• ISBN10: 0802091695
• Edition: 1st
• Format: Hardcover
• Copyright: 2009-05-16
• Publisher: Univ of Toronto Pr

Summary

Cancer on the Margins presents the findings of the Ontario Breast Cancer Community Research Iniative, an organization created to investigate the experiences of women with breast cancer from marginalized and underrepresented groups. The authors examine the psychosocial needs of women living with breast cancer, while investigating differences in treatment, care, and survivorship amongst Aboriginal women, women of colour, francophone women, lesbians, as well as young women, lower-income women, and women in rural areas.Structured as a guide for similar research, Cancer on the Margins provides a 'start to finish' format that reveals the complexities of doing such work at each stage of research, beginning with the study design and ending with the dissemination of results. The authors address the challenges of working with and speaking for these groups of women, the tension between description and interpretation, and the challenge for qualitative work to present findings that positively influence the circumstances of research participants. With a strong commitment to social justice, this volume also shows how participatory research can lead to social change, and indicates effective ways to ensure that research not only reaches, but is also employed in, the communities it intends to serve.Bridging the gap between a wide range of audiences, this vitally important work will be of interest to health professionals, new researchers, policy makers, new researchers, and experienced investigators, as well as the public.

Table of Contents

List of Tables	p. ix
Foreword	p. xi
Acknowledgments	p. xiii
Introduction	p. 3
Research Design in Participatory Approaches
Getting Started in Research with Marginalized Populations	p. 17
Ethical Considerations in Participatory Breast Cancer Research	p. 41
Community-Building versus Career-Building Research: The Challenges, Risks, and Responsibilities of Conducting Research with Aboriginal and Native American Communities	p. 56
Approaches in Data Analysis
Listening for Echoes: How Social Location Matters in Women's Experiences of Cancer Care	p. 75
'Nurses Can't Do It. They Have a Hundred and Ten Patients': Health Professionals' Working Conditions and the Experiences of Informal Caregivers	p. 102
The Politics of Representation
The Stories We Tell: Processes and Politics of Representation	p. 121
If Cancer Has No Colour, What Can I Say? Negotiating Racism and Analytic Authority	p. 138
Reflections on Research: From Different Standpoints
Reflections from an Intersection: Identity, History, Cancer, and Social Change	p. 171
Journeying towards Authenticity: Reflections and Lessons from Our Pathways	p. 192
Survivor, Activist, Advocate: Reflecting on Advisory Committee Roles	p. 215
Implications and Impacts of Knowledge
Making a Difference with Research	p. 235
Moving Knowledge: The Possibilities and Complexities of Qualitative and Participatory Research	p. 252
Recommended Sources for Further Reading	p. 269
Glossary of Terms	p. 275
Contributors	p. 279
Index	p. 285
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