Christina Sinding

Exposing failures, unsettling accommodations: tensions in interview practice

This article aims to augment collective understandings of the ethical complexities of qualitative research, and to encourage more attention to the actual practices of interviewing than has usually been paid in discussions in this area. Drawing on interview transcripts, we offer an analysis of the ways vulnerability may be produced for research participants by the intersection of interview factors (an interview strategy, the interviewer’s presence, a line of questioning) with particular discursive and political surrounds. This conceptualization of the conditions of interviewee vulnerability prompts a revisioning of the power that researchers bring to, and exercise in, interviews. In reflecting on interactions with research participants we describe our efforts to use our power wittingly and responsibly.

Navigating the Social Context of Metastatic Breast Cancer: Reflections on a Project Linking Research to Drama

Over the past two decades there has been a dramatic shift in attitudes towards cancer, particularly breast cancer. The former stigma associated with the disease, while not entirely eradicated, is no longer primary. Breast cancer’s new upbeat image focuses on prevention, early detection and survivorship, not on death. In this article we explore the implications of this societal shift for women with metastatic breast cancer. To do this, we draw on several sources of information: (1) a focus group study we conducted with women with metastatic breast cancer; (2) excerpts from a theatre script about metastatic disease, based in large part on our focus group research; and (3) interviews with participants in the development of the theatre production, especially women with metastatic disease. We conclude that the difficult realities facing seriously ill individuals are most often ignored or avoided by those who surround them. Where the grim challenges of metastatic cancer are acknowledged, patients are often pressured to take up narratives that cast them outside the discourse of everyday life, as either passive victims or courageous heroes.

Of time and troubles: patient involvement and the production of health care disparities.

Patient involvement in care practice has many and diverse proponents. It is endorsed by health care institutions and promoted by community agencies representing people with illness. A vast literature documents the benefits of patient involvement and describes ways to enable it. This article contributes to a critical literature on patient involvement by documenting the work done by women with cancer in relation to care timelines and in responding to troubles with care. We highlight continuities and disjunctures between this work, and discourses of patient involvement as they manifest in documents circulating at an Ontario cancer centre. In making visible the social and material resources that underpin successful involvement, the study shows how initiatives that endorse and promote ‘the involved patient’ can function to exacerbate health care and social disparities. As well, the study extends analysis of the individualization and privatization of health by showing how contemporary discourses of involvement enlist patients to monitor and sustain not only their own health, but also the health care they receive.

Using Institutional Ethnography to Understand the Production of Health Care Disparities

Questions of health care access and equity are often examined by researchers using quantitative approaches, describing patterns of service utilization. Articles based on such approaches often reveal relatively little about how health care services and resources come to be distributed as they are. Articles about qualitative research with marginalized people, although offering textured accounts of people’s experiences of care, often do not systematically link felt troubles to specific features of health systems. Institutional ethnography, a method of inquiry developed over the past 25 years by Canadian sociologist Dorothy Smith and her colleagues, offers a useful resource for researchers exploring and addressing health care disparities. Drawing on previous research and a study in progress on cancer care in Ontario, Canada, I consider the potential of institutional ethnography to make visible how disparities are produced in the routine operation of health services.

Ethics in humanitarian aid work: learning from the narratives of humanitarian health workers

Little analysis has been made of ethical challenges encountered by health care professionals (HCPs) participating in humanitarian aid work. This is a qualitative study drawing on Grounded Theory analysis of 20 interviews with health care professionals who have provided humanitarian assistance. We collected the stories of ethical challenges reported by expatriate HCPs who participated in humanitarian and development work. Analysis of the stories revealed that ethical challenges emerged from four main sources: (a) resource scarcity and the need to allocate them, (b) historical, political, social and commercial structures, (c) aid agency policies and agendas, and (d) perceived norms around health professionals’ roles and interactions. We discuss each of these sources, illustrating with quotes from the respondents the consequences of the ethical challenges for their personal and professional identities. The ethical challenges described by the respondents are both familiar and distinct for bioethics. The findings demonstrate a need to provide practical ethics support for humanitarian health care workers in the field.

Staging Breast Cancer, Rehearsing Metastatic Disease

Social science researchers have fruitfully used a range of conceptualizations of “performance”: as a metaphor for social life, a way of vivifying research findings, and a form of scholarly representation. In this article, the researchers consider performance in its hermeneutic sense, as a way of generating meaning. The drama Handle With Care? Living With Metastatic Breast Cancer was created by a research team, a theater troupe, and women with breast cancer. The researchers employ an interpretive phenomenological framework to explore interviews with women with breast cancer involved in creating Handle With Care? The performative context in which the drama developed allowed certain illness meanings to emerge, intensify, and shift. The article also considers ethical dilemmas surfaced by this project.

Social work and the arts: Images at the intersection

This article considers social work engagement with the arts. We are interested in claims made in the social work literature about why art matters (or should matter) to social work, and about what art achieves for people and communities and ideas. We focus in particular on the images and metaphors at play in descriptions of arts-informed social work projects. Our intent is to offer a framework for understanding what social work communities think (and hope, and imagine) happens when we take up the arts in education, practice and research.

Experiences of Transwomen with Hormone Therapy

This article describes the experiences of 12 transwomen on hormone treatment, ranging in age from 30 to 63. Findings from interviews revealed seven prominent themes: transitioning before hormone treatment, starting on hormones, matching expectations with reality, tracking changes, relationships with health professionals, reflections on gender identity, and impact of hormones. Participants tended to be highly curious about the impact of hormone therapy, and most tracked bodily and psychological changes closely. Despite problematic side effects experienced by most (including periods of depression), an overall mental health benefit was evident, with transwomen feeling relieved about reducing the impact of testosterone and the stress of presenting as men, while being able to openly explore dimensions of being female. While some transwomen expressed awareness of how social influences and ideas about gender played a part in their reactions to hormone treatment, most thought and acted in accordance with the biomedical premise that bodies and identities can be created and recreated through technical physiological manipulation. Hormone therapy was seen as the critical step in committing to, and consolidating gender transition.

Listening to the Voices of Lesbians Diagnosed with Cancer

Abstract This paper focuses on the operations of heterosexism and strategies to counter it in a particular service context: the context of psychosocial support services for women with cancer. The paper draws on findings from a participatory, qualitative study set in Ontario, Canada in which 26 lesbians were interviewed about their experiences of cancer diagnosis, treatment, health care and social support, and their feelings and perceptions about shifts in identity, body, sexuality and relationships. This paper focuses on findings related to the changes research participants perceived as necessary in the provision and organization of cancer support services, in order to increase access and ensure equity for lesbians with cancer and their families.

The Ethics of Engaged Presence: A Framework for Health Professionals in Humanitarian Assistance and Development Work

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships.