Cancer on the Margins : Method and Meaning in Participatory Research

__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.

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.

Contents 5 List of Tables 9 Foreword 11 Acknowledgments 13 Introduction 15 PART ONE. Research Design in Participatory Approaches 31 1. Getting Started in Research with Marginalized Populations 31 2. Ethical Considerations in Participatory Breast Cancer Research 55 3. Community-Building versus Career- Building Research: The Challenges, Risks, and Responsibilities of Conducting Research with Aboriginal and Native American Communities 70 PART TWO. Approaches in Data Analysis 89 4. Listening for Echoes: How Social Location Matters in Women’s Experiences of Cancer Care 89 5. ‘Nurses Can’t Do It. They Have a Hundred and Ten Patients’: Health Professionals’ Working Conditions and the Experiences of Informal Caregivers 116 PART THREE. The Politics of Representation 135 6. The Stories We Tell: Processes and Politics of Representation 135 7. If Cancer Has No Colour, What Can I Say? Negotiating Racism and Analytic Authority 152 PART FOUR. Reflections on Research: From Different Standpoints 185 8. Reflections from an Intersection: Identity, History, Cancer, and Social Change 185 9. Journeying towards Authenticity: Reflections and Lessons from Our Pathways 206 10. Survivor, Activist, Advocate: Reflecting on Advisory Committee Roles 229 PART FIVE. Implications and Impacts of Knowledge 249 11. Making a Difference with Research 249 12. Moving Knowledge: The Possibilities and Complexities of Qualitative and Participatory Research 266 Recommended Sources For Further Reading 283 Glossary of Terms 289 Contributors 293 Index 299