Cancer on the margins : method and meaning in participatory research / edited by Jennifer J. Nelson, Judy Gould, and Sue Keller-Olaman.

Format:

Book

Contributor:

Gould, Judy, 1966-

Nelson, Jennifer J. (Jennifer Jill), 1972-

Keller-Olaman, Sue.

Language:

English

Subjects (All):

Breast--Cancer--Patients--Social conditions--Research--Ontario.

Breast.

Cancer in women--Social aspects--Research--Ontario.

Cancer in women.

Women--Health and hygiene--Research--Ontario.

Women.

Women's health services--Research--Ontario.

Women's health services.

Participant observation.

Marginality, Social.

Physical Description:

1 online resource (306 p.)

Place of Publication:

Toronto : University of Toronto Press, c2009.

Language Note:

English

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.

Contents:

Foreword / Heather Maclean

Introduction / Jennifer J. Nelson, Judy Gould and Sue Keller-Olaman

pt. 1. Research Design in Participatory Approaches

1. Getting Started in Research with Marginalized Populations / Sue Keller-Olaman and Stephanie Austin

2. Ethical Considerations in Participatory Breast Cancer Research / Stephanie Austin

3. Community-Building versus Career-Building Research: The Challenges, Risks, and Responsibilities of Conducting Research with Aboriginal and Native American Communities / Terry Mitchell and Emerance Baker

pt. 2. Approaches in Data Analysis

4. Listening for Echoes: How Social Location Matters in Women's Experiences of Cancer Care / Judy Gould, Chris Sinding, Terry Mitchell and Margaret I. Fitch

5. 'Nurses Can't Do It. They Have a Hundred and Ten Patients': Health Professionals' Working Conditions and the Experiences of Informal Caregivers / Chris Sinding

pt. 3. Politics of Representation

6. Stories We Tell: Processes and Politics of Representation / Chris Sinding, Lisa Barnoff, Pamela Grassau, Fran Odette and Patti McGillicuddy

7. If Cancer Has No Colour, What Can I Say? Negotiating Racism and Analytic Authority / Jennifer J. Nelson

pt. 4. Reflections on Research: From Different Standpoints

8. Reflections from an Intersection: Identity, History, Cancer, and Social Change / Jennifer J. Nelson and Judy Gould

9. Journeying towards Authenticity: Reflections and Lessons from Our Pathways / Pamela Grassau and Kara Griffin

10. Survivor, Activist, Advocate: Reflecting on Advisory Committee Roles / Patti McGillicuddy, Falia Damianakis, Ann Wray Hampson and Judy Gould

pt. 5. Implications and Impacts of Knowledge

11. Making a Difference with Research / Chris Sinding, Judy Gould and Ross Gray

12. Moving Knowledge: The Possibilities and Complexities of Qualitative and Participatory Research / Margaret I. Fitch.

Notes:

Includes bibliographical references and index.

Description based on online resource; title from PDF title page (publisher's Web site, viewed 21. Dez 2019)

ISBN:

1-4426-9134-4

1-4426-8751-7

OCLC:

923772184