This is the second Qualitative Methods Journal Club from Drexel University (Philadelphia, United States). This time, ten members of the Department of Community Health and Prevention at Drexel University’s Dornsife School of Public Health took part in a one-hour discussion via Zoom on June 28, 2022. This group included faculty and doctoral students with backgrounds and interest in substance use research and/or qualitative methods.
Article summary
The article discusses the ethical implications of using narrative and visual life history methods with people who live on the margins of society and inject drugs. The study was part of a larger multi-site research project that used a positive deviance framework to examine practices of Hepatitis C avoidance among people who inject drugs. The study focused on 38 London-based people who injected drugs, the majority of whom were Hepatitis C – negative. The primary goal of the study was to discern the enablers and facilitators of Hepatitis C avoidance in this group via the use of narrative and visual life history methods. The article describes the methods in detail and discusses their ethical implications.
Oritigal Article: “It’s not much of a life”: The benefits and ethics of using life history methods with people who inject drugs in qualitative harm reduction research by Magdalena Harris and Tim Rhodes. Published in Qualitative Health Research (2018).
Most participants underwent two rounds of qualitative interviews. During the first round, they were asked to reflect on their whole life; in parallel, an interviewer/author was hand-drawing a timeline adding meaningful life events and checking the accuracy of the data with the participant. Between the first and second interviews, a two-dimensional “life-grid” was computer-generated, grouping meaningful events into 7 broad domains (Y-axis) across time (X-axis). A copy of the life-grid was handed over to the participants at the start of the second interview, which focused on specific protective practices of Hep C avoidance. Participants’ reactions to the life-grids ranged from pleasure at receiving an individually developed chart with life events or valuing the chart for its therapeutic value (as a reminder of things not to be repeated) to shock at observing the graphic representation of their entire life which they deemed almost “wasteful”; some participants refused to take the life-grids away with them.
Discussion
Members were impressed with the “life-grids,” a visual life history method that was novel to them. They appreciated the collaborative spirit in drawing timelines and highlighted the inductive process in developing broad domains used in life-grids. One member noted how the article encourages different ways of thinking about future research, particularly the need to always check matters that are important for research participants instead of imposing your own values on them. Members also appreciated how the first interview was not solely focused on drug use, but covered the entire life. The group also noticed the value of the positive deviance framework as a strength-based, solution-oriented approach in public health research.
A two-dimensional “life-grid” was computer-generated, grouping meaningful events into 7 broad domains (Y-axis) across time (X-axis)
Members raised interesting parallels between some elements of the research design described in the article and other concepts/methods. For example, one member compared the positive deviance framework with “designing from the margins,” a guiding principle of human-centered design, which aims to identify people with more positive outcomes despite having less resources. Another member linked the domains used in the life-grids with the “life rainbow” technique used in mental health therapy, noting though that unlike the life-grids, the “life rainbow” uses predetermined categories. The other member compared life grids with pictorial methods of measuring social norms.
The group discussed ethical issues encountered by the researchers. One member with experience of using timeline followback, a comparable quantitative approach, noted that asking people who use drugs to reflect on their past can empower participants and enhance the validity and reliability of research; however, such explorations may have cost. Therefore, training in empirical ethics can be valuable, as well as stepping back, reflecting and even writing a paper to share ethically challenging situations with peers, something that was done in the present article. Such a paper can be useful for not only researchers, but also members of Institutional Review Boards who usually have limited knowledge of issues facing investigators working with vulnerable populations. The group highlighted participants’ profound reactions to the life-grids and agreed that looking at one’s life on a single piece of paper may be challenging for some people, especially for people whose life has some troubling aspects. One member wondered if the limited number of domains, without including any nuance, contributed to negative reactions. Another member characterized life-grids as clinical and formal and wondered about the most appealing and safe ways of displaying such data for people who inject drugs so that they would like to keep it.
The group highlighted participants’ profound reactions to the life-grids and agreed that looking at one’s life on a single piece of paper may be challenging for some people
The group also discussed data privacy issues associated with collecting biographical information. One member expressed concern about confidentiality and legal risks related to electronic data capturing (during digital development of life-grids) and wondered whether protections were adequate so that data could not be linked to individuals by law enforcement agencies. Another member was more concerned about supplying participants with the paper versions of life-grids, given that papers can be easily misplaced or lost and get into the wrong hands. One member suggested that using participants’ age instead of calendar years on the X-axis could have helped ‘de-identify’ the data and add context.
Still, the group appreciated many layers of data collection (conducting two, in some cases, even three interviews) and engaging with participants in multiple ways. The group also praised the authors for their detailed reflexivity and honesty about the research process, adverse reactions, and mistakes. The group was impressed with the level of depth and care about participants and data, the quality of writing, and the amount of time that went into the paper preparation. Members acknowledged that despite ethical challenges, life history methods have a lot of potential in portraying complicated pictures of lives and their use requires preparation, skills, and sensitivity. One member suggested it might be a good idea to pretest those methods on researchers themselves. Another member expressed interest in combining life history narratives with photovoice as a visual method, including asking participants to bring their own photos or any photos that represent meaningful life events. The group concluded that the article was really rich with a lot of implications. “Methods were interesting and the discussion itself was even brave,” – noted one member capturing the essence of this discussion.
Editor’s note: The title and link for this website entry was changed on 6 January 2023
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