Cancer on the Margins

Cancer on the Margins: Method and Meaning in Participatory Research

JENNIFER J. NELSON
JUDY GOULD
SUE KELLER-OLAMAN
Copyright Date: 2009
https://www.jstor.org/stable/10.3138/9781442687516
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  • Book Info
    Cancer on the Margins
    Book Description:

    Cancer on the Marginspresents 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.

    eISBN: 978-1-4426-8751-6
    Subjects: Health Sciences

Table of Contents

  1. Front Matter
    (pp. i-iv)
  2. Table of Contents
    (pp. v-viii)
  3. List of Tables
    (pp. ix-x)
  4. Foreword
    (pp. xi-xii)
    Heather Maclean

    This book is the culmination of a six-year program of participatory, psychosocial research in the field of breast cancer in Ontario, Canada. The research program emerged through a commitment by the Canadian Breast Cancer Foundation, Ontario Chapter (CBCF, ON) to make a difference in the daily lives of women diagnosed with breast cancer by funding research that honoured the experience and wisdom of these women, their loved ones, and those health professionals and volunteers who support them. CBCF, ON approached the Centre for Research in Women’s Health, a partnership of the University of Toronto and Women’s College Hospital, to develop...

  5. Acknowledgments
    (pp. xiii-2)
  6. Introduction
    (pp. 3-14)
    JENNIFER J. NELSON, JUDY GOULD and SUE KELLER-OLAMAN

    This wise bit of insight encapsulates much of the drive and motivation behind the research represented in this book. In some ways, it speaks to the very core of qualitative, exploratory research – that is, the need to delve underneath the statistics and ‘facts’ to ask critical questions aboutwhythings are as they seem, why things occur in a particular way, and from whose perspective, in what context, and so on. For most of us in this book who approach psychosocial issues in breast cancer care from social science backgrounds, these investigative entry points are commonplace; however, when applied in...

  7. PART ONE: RESEARCH DESIGN IN PARTICIPATORY APPROACHES

    • 1 Getting Started in Research with Marginalized Populations
      (pp. 17-40)
      SUE KELLER-OLAMAN and STEPHANIE AUSTIN

      In this chapter, we focus on some of the methodological issues involved when getting participatory research projects underway. We start by building an understanding of qualitative and participatory approaches in health research and then look more closely at the methods we can apply in breast cancer settings. We discuss how to go about crafting a research question, designing a research project, recruiting participants, and gathering data – all in particular with diverse populations. To show how the practicalities of the various stages may unfold over the course of a research project, we consider case examples from Ontario Breast Cancer Community Research...

    • 2 Ethical Considerations in Participatory Breast Cancer Research
      (pp. 41-55)
      STEPHANIE AUSTIN

      Conducting participatory research on women’s experiences of breast cancer involves collaboration among differentially positioned individuals – researchers, health professionals, community groups, and concerned citizens. Each stakeholder group represents a constituency that has ethical codes of conduct to guide its research activities. This chapter will discuss the processes involved in negotiating academic and community needs and expectations in an effort to engage in ethical research. The broad social and political landscape of breast cancer research will be critically analysed to determine whose needs are being served by the research (e.g., funders, academics, organizations, consumer groups, individual patients). I will address the tensions...

    • 3 Community-Building versus Career-Building Research: The Challenges, Risks, and Responsibilities of Conducting Research with Aboriginal and Native American Communities
      (pp. 56-72)
      TERRY MITCHELL and EMERANCE BAKER

      The following chapter provides a Native and non-Native perspective on community-based participatory research with Native communities. We introduce significant challenges and discuss strategies employed to negotiate and address these challenges from an ethical and anticolonial standpoint. We emphasize the importance of ensuring that participatory research serves the interests and needs of the Native communities in which the research is being conducted. Clearer guidelines are recommended for conducting participatory research to increase the probability of researchers (Native and non-Native) successfully engaging in community-building versus career-building research.

      The Aboriginal Women’s Cancer Care Project (AWCCP) was designed to increase understanding of the intersection...

  8. PART TWO: APPROACHES IN DATA ANALYSIS

    • 4 Listening for Echoes: How Social Location Matters in Women’s Experiences of Cancer Care
      (pp. 75-101)
      JUDY GOULD, CHRIS SINDING, TERRY MITCHELL and MARGARET I. FITCH

      The Intersecting Vulnerabilities research program began with the separate investigations by three research teams of the cancer care experiences of Aboriginal women (led by author TM), older women (led by author CS), and lower-income women (led by JG). We focused on the lived experience of breast or gynecological cancer among women who occupy these three social locations as critical cases – critical sites for knowledge development about women’s gendered experiences of health, illness, and care. A second phase of the project explored women’s similar experiences across the communities.

      The main focus of the research was to understand how interactions with the...

    • 5 ‘Nurses Can’t Do It. They Have a Hundred and Ten Patients’: Health Professionals’ Working Conditions and the Experiences of Informal Caregivers
      (pp. 102-118)
      CHRIS SINDING

      The majority of deaths in Canada occur in hospitals (Heyland, Lavery, Tranmer, Shortt, & Taylor, 2000). Yet most of dying takes place at home (Rhodes & Shaw, 1999), and most care for people who are dying is provided informally by family members and friends.

      Trends supporting home-based provision of palliative care reflect shifts in the wider economic and political context of healthcare provision. Since the mid-1970s, public discourse and government policy (prompted by economic globalization – see Coburn, 1999) has organized a relatively residual role for the state in the care of people who are disabled, elderly, or ill. Congruent with...

  9. PART THREE: THE POLITICS OF REPRESENTATION

    • 6 The Stories We Tell: Processes and Politics of Representation
      (pp. 121-137)
      CHRIS SINDING, LISA BARNOFF, PAMELA GRASSAU, FRAN ODETTE and PATTI MCGILLICUDDY

      The Lesbians and Breast Cancer Project was designed to generate understanding about lesbians’ experiences of cancer and cancer care, and to foster positive change for lesbians with cancer in lesbian communities and in health and social services. We took a participatory action research (PAR) approach, in which researchers are positioned not as ‘separate, neutral academics theorizing about others, but coresearchers or collaborators with people working towards social equity’ (Gatenby & Humphries, 2000, p. 90). The Lesbians and Breast Cancer Project team was made up of lesbians living with cancer and lesbians affected by cancer; representatives from agencies in the cancer,...

    • 7 If Cancer Has No Colour, What Can I Say? Negotiating Racism and Analytic Authority
      (pp. 138-168)
      JENNIFER J. NELSON

      This chapter explores the analytic implications and responsibilities inherent in a researcher’s authorship of other people’s experiences. In particular, it examines what it means to interpret and retell others’ experiences across profound social, personal, and political differences and limits. I tackle a series of questions through a research project example that sits at the crux of these differences and problems. I do not ‘resolve’ the questions and issues so much as I begin to unpack their complexities and propose ways to think of them as implicit and embedded elements in a research process.

      Entering the field of psychosocial cancer care...

  10. PART FOUR: REFLECTIONS ON RESEARCH:: FROM DIFFERENT STANDPOINTS

    • 8 Reflections from an Intersection: Identity, History, Cancer, and Social Change
      (pp. 171-191)
      JENNIFER J. NELSON and JUDY GOULD

      This chapter is written from the intersection of several stories. One involves that of two researchers thinking through personal histories that have led us to work with women who have breast cancer. Another story is that of grappling with our positions – socially, economically, professionally, and personally – vis-à-vis the research participants with whom we work. Another is that of our participants’ struggles to resolve their information and support needs following a diagnosis of breast cancer, across profound barriers of race, culture, and low-income status. Yet another story involves our relationship to the data we collect – how to ‘read’ or analyse it,...

    • 9 Journeying towards Authenticity: Reflections and Lessons from Our Pathways
      (pp. 192-214)
      PAMELA GRASSAU and KARA GRIFFIN

      Community-based participatory research (CBPR), a research method, process, and philosophy, has guided much of the work conducted through the Ontario Breast Cancer Community Research Initiative (OBCCRI).¹ As project coordinators who have worked with OBCCRI on two CBPR studies – Kara on the Ontario Breast Cancer Survivor Dragon Boat Study (see table 9, page 193) and Pam on the Lesbians and Breast Cancer Project (see table 7, page 122) – we propose, in this chapter, to explore the concept of ‘authenticity’ as an overarching core principle in the practice and process of community engagement in CBPR. ‘Authenticity’ has been historically aligned with participatory...

    • 10 Survivor, Activist, Advocate: Reflecting on Advisory Committee Roles
      (pp. 215-232)
      PATTI MCGILLICUDDY, FALIA DAMIANAKIS, ANN WRAY HAMPSON and JUDY GOULD

      Participatory action research (PAR) is a form of research that aims to place the ‘research capabilities in the hands of the … disenfranchised people so that they can transform their lives for themselves’ (Hagey, 1997, p. 1). The fundamental values associated with accomplishing this type of research include that the process is participatory, a collaboration between community members and researchers; a mutual learning experience, an opportunity to build capacity and increase self-determination; and an opportunity to strike a balance between research and action (Minkler, 2004). Embedded within this methodology is the principle that the stakeholder or involved community member has...

  11. PART FIVE: IMPLICATIONS AND IMPACTS OF KNOWLEDGE

    • 11 Making a Difference with Research
      (pp. 235-251)
      CHRIS SINDING, JUDY GOULD and ROSS GRAY

      The Ontario Breast Cancer Community Research Initiative (OBCCRI) was established to explore the psychosocial needs of marginalized women with breast cancer. Unlike most research units, however, our mandate extends beyond study: we have a stated commitment to increasing the responsiveness of health professionals and communities to the needs of the women with whom we work.

      According to the usual ways of assessing researchers and research initiatives (publications generated, research dollars secured, research capacity built) OBCCRI is doing just fine. But over five years of developing, implementing, and sharing knowledge from research projects, have we really made a difference?

      Certainly we...

    • 12 Moving Knowledge: The Possibilities and Complexities of Qualitative and Participatory Research
      (pp. 252-268)
      MARGARET I. FITCH

      The ultimate aim of research in health and illness is to uncover new knowledge that will aid in the improvement of patient care. To accomplish this, researchers must not only conduct the research and uncover the knowledge, but also share that knowledge so that healthcare providers and decision-makers have it available for use. For researchers who engage in qualitative and participatory approaches, a central challenge is finding the avenues for effective dissemination of their findings. This chapter will highlight some of the current thinking about knowledge dissemination and explore some of the learnings about it from work of the Ontario...

  12. Recommended Sources For Further Reading
    (pp. 269-274)
  13. Glossary of Terms
    (pp. 275-278)
  14. Contributors
    (pp. 279-284)
  15. Index
    (pp. 285-291)