Marilys Guillemin

Ethics, Reflexivity, and “Ethically Important Moments” in Research

Ethical tensions are part of the everyday practice of doing research—all kinds of research. How do researchers deal with ethical problems that arise in the practice of their research, and are there conceptual frameworks that they can draw on to assist them? This article examines the relationship between reflexivity and research ethics. It focuses on what constitutes ethical research practice in qualitative research and how researchers achieve ethical research practice. As a framework for thinking through these issues, the authors distinguish two different dimensions of ethics in research, which they term procedural ethics and “ethics in practice.” The relationship between them and the impact that each has on the actual doing of research are examined. The article then draws on the notion of reflexivity as a helpful way of understanding both the nature of ethics in qualitative research and how ethical practice in research can be achieved.

Understanding Illness: Using Drawings as a Research Method

Visual methodologies are becoming more evident in social research. These methodologies encompass media such as film, video, still photography, electronic visual media, and material artifacts. In this article, the author examines the use of drawings as a research tool used as an adjunct to other social research methods. Using examples from two studies, she illustrates how drawings can be used to explore the ways in which people understand illness conditions. She argues that the act of drawing necessitates knowledge production, with a visual product as its outcome. Although the examples presented in this article are limited to illness conditions, she argues that drawings offer a rich and insightful research method to explore how people make sense of their world.

Questions of process in participant-generated visual methodologies

There is an increasing literature on visual methodologies in which images are generated by participants as part of the research, as distinct from the analysis of existing images or images taken by the researcher. Although there are growing numbers of publications that present frameworks for analysing images and their meaning, this is an area requiring further deliberation and consolidation. Our contribution is to give serious attention to the processes of image production in participant-generated visual methodologies. We examine methodological and ethical considerations that arise before, during and after image production. Our work is in health research and we focus specifically on two methods: first, a combination of photovoice and photo-elicitation, in particular with young people; and second, drawings as research method. Based on examples using these two methods, we pose questions of process for image production and submit this for interrogation for reasons of methodological, analytical and ethical rigour.

Rapport and respect: negotiating ethical relations between researcher and participant

Qualitative research is largely dependent on building good interpersonal relations between researcher and participant. This is necessary for generating rich data, while at the same time ensuring respect is maintained between researcher and participant. We argue for a better understanding of researcher–participant relations in research practice. Codes of ethics, although important, do not address these kinds of ethical challenges. Negotiating the ethical relations between researcher and participant is paramount in maintaining ethical rigour in qualitative research. In this paper we propose concepts that can assist in understanding how the ethics of research relations are negotiated in practice; the ‘zone of the untouchable’ from the Danish philosopher, Løgstrup, is combined with the notion of ‘ethical mindfulness’. We argue how and why these concepts in tandem can heighten awareness and offer ways to address the ethically important moments in research.

From photographs to findings: visual meaning-making and interpretive engagement in the analysis of participant-generated images

Although the use of visual research is gaining increased acceptance, there remains a lack of attention directed to how to rigorously analyse visual images. A framework of ‘interpretive engagement’ is proposed to describe analytic processes for meaning-making of participant-generated visual images. The ‘interpretive engagement’ framework comprises three stages of meaning-making; these are meaning-making through participant engagement (Stage 1), through researcher-driven engagement (Stage 2), and through re-contextualising (Stage 3). These three stages on their own are limited, but in combination provide rich and comprehensive visual analysis. The ‘interpretive engagement’ framework involves five key elements, namely, the researcher, the participant, the image and the context of its production and the audience/s. Each plays a significant role, contributing to the overall analysis. To illustrate the framework, a research example using participant-generated photographs from young people with chronic illness is used. This enables the visual analytic work we advocate to be evident and tangible for the reader, illustrating how interpretive engagement can support the development of substantive findings. Although multifaceted, we argue this analytic framework is predominantly researcher-driven with an emphasis on close inspection and engaging with the details of each image to determine overarching elements of the images as a collection. It involves systematically and deliberately interpreting the material followed by articulation of an analytic story which accommodates participant intentions, researcher interpretations, theoretical underpinnings and emerging knowledge claims. Implementation of this interpretive framework offers the potential for rich and thorough visual analysis and interpretations.

Human Research Ethics Committees: Examining Their Roles and Practices

Considerable time and resources are invested in the ethics review process. We present qualitative data on how human research ethics committee members and health researchers perceive the role and function of the committee. The findings are based on interviews with 34 Australian ethics committee members and 54 health researchers. Although all participants agreed that the primary role of the ethics committee was to protect participants, there was disagreement regarding the additional roles undertaken by committees. Of particular concern were the perceptions from some ethics committee members and researchers that ethics committees were working to protect the institutions interests, as well as being over-protective toward research participants. This has the potential to lead to poor relations and mistrust between ethics committees and researchers.

Embodying Heart Disease Through Drawings

This article examines how women with reported heart disease experience and understand their condition. The participants comprised 32 women, aged 49–54 years, from the mid-age cohort of the Australian Longitudinal Study on Women’s Health who self-reported to have heart disease. Following individual interviews, each participant was asked to draw her heart disease. The article focuses on the analysis of the drawings of heart disease produced by the women. The drawings were analysed into three themes: first, the heart at the centre, second, the heart in the lived body and finally, heart disease as a social illness. The drawings are considered both as visual products of women’s knowledge about heart disease and also as processes of embodied knowledge production. The use of drawings is an interesting and insightful method with which to explore understandings of illness.

Developing Sensory Awareness in Qualitative Interviewing A Portal Into the Otherwise Unexplored

Within the social sciences there has been an increased interest in the senses. Much of this work has focused on ethnographic methods and has concentrated on research about the senses. In this article we focus on interviews and examine the value of expanded interviewing strategies that use the senses as access points. We argue that a sensory awareness can enrich interviews by offering a portal to otherwise unexplored illness or health care experiences which are either too difficult to articulate or too intangible to describe. Sensory awareness incorporates not only attentiveness to the research environment but also the utilization of sensory questions or prompts to gain insight into the research experience. We draw from a variety of empirical studies, and offer methodological guidance to the researcher while exploring ethical and challenging aspects of incorporating sensory awareness into the research interview.

Attitudes to Genetic Testing for Deafness: The Importance of Informed Choice

With recent progress in the identification of genes for deafness, it is highly likely that genetic testing, including pre-natal testing, for deafness will become more widely available. In a context where there are concerns about pre-natal testing, and where many in the Deaf community contest the understanding of deafness as a disability, it is important to examine the attitudes of Deaf/deaf people toward genetic testing. This qualitative study employed in-depth interviews to investigate the views about genetic testing for deafness of 19 participants, who were identified as functionally deaf or hearing impaired, or as belonging to the Deaf community. The key findings are that participants were generally supportive of genetic testing for deafness but only when full information about all relevant aspects of deafness is given to prospective users of genetics services. Participants emphasized informed choice, stating that information about medical and technological options for deaf people should be provided, together with information about communication, education, and the experience of being deaf. Although there was less support for pre-natal diagnosis and termination of pregnancy for deafness, most participants nonetheless felt that individual choice was important and that pre-natal diagnosis should be made available to those who wanted to use it.

Developing "ethical mindfulness" in continuing professional development in healthcare: use of a personal narrative approach.

Continuing professional development (CPD) and life-long learning are now widely accepted goals of healthcare professions. Although this is perhaps more apparent in the medical profession, most other healthcare professions are in widespread agreement that in order to fulfill their professional requirements, healthcare professionals need to adopt a practice of life-long learning. Continuing professional development is seen as important for a number of reasons. One reason is that the continuing advances in biomedical science and technology mean that new drugs, devices, and procedures are constantly being introduced into healthcare practice, requiring ongoing acquisition of new content knowledge. A second reason for CPD is in response to the recognition that healthcare professionals do not emerge from their initial training with the skills they need for practice already fully mastered. Learning of skills, such as communication with patients, families, and other professionals, is an on-going process.