This case study discusses the potential for conflict within qualitative research collaborations. It is particularly focused on collaborations with community organizations, and on the ethical principle of respect—that individuals should be treated as autonomous agents, yet those with diminished autonomy must be protected. Much of the author’s research has been on sensitive topics, including self-harm and sexual abuse. Conducting research with young women who have experienced these entails a number of challenges, including access, recruitment, the development of trust, and managing potential vulnerability. However, participants frequently report benefits from participation, even when distress is experienced. Although collaborating with service providers with which potential research participants engage may reduce some of these difficulties, other tensions frequently arise. Furthermore, research on sensitive topics and/or with vulnerable people poses specific ethical difficulties. These include tensions between researcher and participant needs, such as conveying the possibility of distress while not discouraging participation. Service providers are often aware of some of these possible issues, and may take on a gate-keeper role through a desire to protect their clients. In so doing, the autonomy of potential participants is diminished. Thus, the development of trust on the part of both collaborating services and participants is key to the opening of research spaces. The challenges of complex and competing needs in research collaborations will be examined through the use of a specific research example.
By the end of this case, students should be able to
- Describe the ethical principle of respect
- Understand ways of reducing risk in research on sensitive topics
- Describe some means of recruitment of participants for qualitative research, especially on sensitive topics
- Discuss some challenges in doing research on sensitive topics
As a social psychologist interested in risk and resilience in young women, much of my research has been on sensitive topics, including self-harm and sexual abuse, using qualitative methods (principally semi-structured interviews). Conducting research with these young women involves several challenges, including initially making contact, making plain reasons for their contribution, the development of trust, and managing potential vulnerability and risk of distress. However, participants frequently report benefits from participation, even when distress is experienced. This is recorded both by others (e.g., Decker, Naugle, Carter-Visscher, Bell, & Seifert, 2011) and is something I have frequently experienced—participants often express gratitude for the opportunity to tell their story as they see it, in a space where they do not feel defensive or “questioned” (as will be elaborated below). Although collaborating with service providers with which potential research participants engage may reduce some of these difficulties (such as assistance with recruitment and the provision of participant support beyond the research), other tensions may arise. This case discusses the potential for conflict within research collaborations with particular regard to the ethical principle of respect (as described in the Belmont Report: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Department of Health, Education and Welfare, 1978): that individuals should be treated as autonomous agents yet those with diminished autonomy must be protected.
Research on sensitive topics and/or with vulnerable people poses specific ethical difficulties and tensions. These include tensions between researcher and participant needs, such as conveying to participants the possibility of distress while not discouraging participation, developing safety protocols for both the participants and the researcher, and staying within the confines of the research topic (as described to ethics review boards and funders) versus allowing participants to influence the agenda. For example, the researcher may wish to undertake semi-structured interviews, which allows for topics to be brought up by the participants that the researcher had not anticipated. This may aid in the robustness of the research, but also risks the disclosure of distressing material, or information about which the researcher must take action, such as imminent danger.
Service providers are usually aware of at least some of these possible issues, and may take on a gate-keeper role through a desire to protect their clients, such as “vetting” how and to whom information sheets and other recruitment materials are distributed and encouraging or discouraging individuals from participating. In so doing, the autonomy of potential participants to make their own participation decisions could be diminished. Thus, the development of trust on the part of both collaborating services and participants is key to the opening of research spaces.
In this case, the challenges of complex and competing needs in research collaborations will be examined. I will begin by discussing relevant background practicalities. These include broad ethical principles, and considerations when working with vulnerable populations and conducting research on sensitive topics. Following this, I will use the specific example of engaging with service providers with regard to the recruitment of young women who may be deemed to be “at risk”—a problematic term in itself. In particular, a meeting in which a number of concerns about the ethics of research were raised, and distrust of researchers was evident, will be examined and used as a case study. A number of practical questions to consider are introduced, including the possible conflict between gate-keeping and autonomy, what constitutes harm, and the mitigation of harm. The key lessons learned are then discussed.
In this section, I focus on putting ethical principles into practice, particularly in research on sensitive topics. This includes the minimization of risk, and introducing some considerations with regard to recruitment.
A frequently cited guiding document, the Belmont Report (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Department of Health, Education and Welfare, 1978), discussed several basic ethical premises: respect for persons, beneficence, and justice. The premise of respect is further broken down into two principles: individuals should be treated as autonomous agents, and persons with diminished autonomy are entitled to protection. With regard to beneficence, people are treated in an ethical manner not only by respecting their decisions and protecting them from harm, but also by making efforts to secure their well-being. In the Belmont Report, beneficence is understood as an obligation. Finally, the principle of justice entails issues such as selecting a sample to which resulting research benefits may accrue. The principle of respect is most relevant to the current discussion.
Shivayogi defines vulnerable populations as “The disadvantaged sub-segment of the community requiring utmost care, specific ancillary considerations and augmented protections in research” (Shivayogi, 2013, p. 53). Also relevant are conditions that affect an individual’s ability to make fully informed decisions or circumstances that render a group or population vulnerable to coercion—for example, if the researcher is in a position of power over the research participants, such as a doctor–patient relationship. While there may be some overlap between vulnerable populations and sensitive topics, this is not necessarily the case. For example, although sexual abuse is a sensitive topic, it may be a mistake (and possibly patronizing) to assume that all women who are survivors of sexual abuse will be especially emotionally or psychologically vulnerable. Thus, the researcher must attend carefully to the needs of individual research participants. That said, it is generally considered that the researcher has a duty to minimize risk for all participants, regardless of possible vulnerability.
There are many ways in which the risk of distress for participants can be reduced. These include the following:
- Clear information about the aims and topics of the research, delivered in more than one way (e.g., a written information sheet, plus a phone conversation prior to scheduling an interview, plus reiteration at the beginning of the interview).
- Multiple opportunities to opt out of participation (e.g., “blind” distribution of recruitment materials, discussed further below; the onus on the participant to make contact to arrange an interview; further confirmation of willingness to participate at the beginning of the interview; reiteration of the option to refuse to answer questions).
- Assessing potential risk through screening interviews (discussed further below).
- An invitation to have a support person attend the interview.
One other way of minimizing risk is to recruit through an organization that works with the population concerned. This has several possible advantages, such as providing access to potential participants, and knowing that participants have access to support, as well as the organization being able to vouch for the research. However, enlisting the aid of external organizations may also give rise to complications.
Those organizations may base their actions on a desire to protect those they work with (service users = potential participants). The result may be the (inadvertent) casting of potential participants as lacking in agency or the ability to assert or attend to own needs. Reluctance may also be based on distrust of researchers and/or a lack of resources; these will be discussed further below. In addition, it is often considered preferable for blind distribution to take place—that is, the researcher does not know who has received the recruitment materials (e.g., flyer) and therefore the recipient does not feel a sense of obligation to take part, but this provides an opportunity for the organization to be selective in distribution. Consideration must also be given as to whether it is possible that service users may feel obliged to the collaborating organization.
Although ethics in research are often focused on the participants, one could argue that all stakeholders—including collaborating organizations—should be treated ethically. Both ethically and practically, to establish a sustainable relationship, the benefits to the service organization must also be clear. Such organizations may already have great demands on their time and resources so any collaboration or request for assistance must be based in a spirit of reciprocity—what’s in it for them? Will the research findings themselves be of direct benefit, through improving practice? Will they be able to understand their clients better, or gain a clearer understanding of how their clients view the service? Are there other possible advantages to working with you?
The specific example that I wish to use to illustrate this case is of a meeting of a coalition of service providers. Normally, I have several organizations that I work with that know and trust me and my research processes. They are interested in my research and find the findings helpful, so collaborating in this way is beneficial to all concerned. However, due to the open nature of this particular project—on risk and resilience in young women—recruitment was going unusually slow. That is, I wanted to talk to young women who might be considered by some to be engaging in risky behaviors, but the aim was to explore what these young women themselves considered to be risky. Thus, the difficulty was in how to recruit participants who engage in risky behavior without using preconceived ideas of risk.
Often I would recruit participants by placing flyers in places where suitable people are likely to come across them, and on social media. These flyers would invite interested people to contact me directly to find out more. However, that was not working well in this case. On discussing this issue with an interested organization, it was suggested that I attend a monthly forum of several organizations that work in related areas, who would be willing to distribute flyers. I gratefully accepted. However, the meeting was more challenging than I had anticipated.
On arriving at the meeting I was greeted warmly by a colleague of the person who had invited me—who apologized for her absence (this meant that I knew no-one at the meeting). I proceeded to thank the group for allowing me to attend, and briefly introduced myself (being aware of the limited time available) and outlined the project. I then asked for questions. The first question took me by surprise, and was a forerunner of what was to come: “Do you have ethics approval for this research?” With hindsight, I should, of course, have explained at the start that I did (I had forwarded information sheets several days earlier, but clearly not all those present had read them)—for me, it is a given that all research will have been through an ethics review process. What followed was an in-depth scrutiny of my experience and credentials. Having been a youth worker myself, I had previously been engaged in discussions of what I have come to think of as “heart versus head”: although this seems to have largely changed in recent years, it used to be the case that often those working with young people in risky situations had few formal qualifications, instead relying on their experience, empathy and on-the-job training. An occasional corollary of this seems to be a lack of trust of those who are perceived to have a high level of education (the “head” for the work) but not the experience and (possibly) the empathy (the “heart”). This attitude was again in evidence among some of those present, and it became clear that I had made a mistake in assuming that those attending had been briefed and were already willing to assist.
Those readers familiar with the social psychological concept of conformity will not be surprised to learn that once the discussion had set off on a path of distrust, led by a dominant personality, it was extremely difficult to overcome the rapidly developing (negative) assumptions. Some of those present at the meeting were concerned about protecting the people they work with, who they understandably see as vulnerable. Due to the unfortunate omission of an explicit discussion of ethics at the beginning of the meeting, despite my successful history of research in this area, I did not manage to convince them that their clients would be safe if they took part in my research. While not all those present may have shared the view expressed primarily by one person, no one offered an alternate opinion, and no one volunteered to assist by passing on information about the research to potential participants. Thus, they took on the role of gate-keepers. The result was that I had to search elsewhere for assistance with recruitment.
- Does gate-keeping contradict the principle of respect for autonomy?
Is the possibility that taking part in research could cause distress sufficient for an organization that could assist with recruitment to instead take on a gate-keeper role? Are they justified in refusing to pass on information to potential participants—or does this constitute reducing their autonomy?
Guidelines on ethical research practice usually make it clear that people with reduced decision-making capacity should be protected, especially from research that may put them at risk of physical or psychological harm. However, when dealing with adults who are not intellectually impaired, it may be argued that the decision on whether or not to participate should be left with the potential participants.
- What would have been the possible benefits to participants, and what constitutes “harm”?
As discussed by Becker-Blease and Freyd (2006), grief, anger, and fear in response to discussing trauma is understandable and not necessarily harmful. The opportunity to tell their story and contribute to the body of knowledge—and possibly practical change—might over-ride participants’ short-term distress and in itself be empowering. Perhaps acknowledgement of participants’ strength and resilience and finding ways of supporting this fits better with research values than “protection.”
- Where harm is a possibility, how might this be mitigated?
As a way of resolving this issue, tools for assessing and minimizing potential harm, such as screening interviews and distress protocols may be developed. For example, in my previous research on suicidal behavior, I have stipulated that to take part, participants must not have engaged in suicidal behavior for at least a year, and consider that they are no longer suicidal. However, this is up to the participant to decide and I have had to trust their judgment as to whether it is safe for them to participate. Distress protocols may include the following:
- Taking time to get to know participants and build a relationship before the interview (or other data collection) begins,
- Reiterating to participants that they need not answer every question, are welcome to stop the interview at any time, and may ask to take a break,
- A strategy for recognizing distress at an early stage (e.g., attending to body language) and responding to it (e.g., asking if the participant wishes to take a break)
- If distress occurs but the participant chooses to continue, it may be appropriate to leave some questions unasked—at least for the moment—or shorten the interview (or other data collection process), although this again raises the question of respecting the participant’s ability to make decisions
- Ensuring that participants have support (e.g., bringing a friend to the interview)
- Providing a list of support organizations
- Having clear boundaries that are articulated to the participants (that it is a research interview, not a counseling session, and it is important that everyone feels reasonably comfortable with the process).
Conducting research on sensitive topics entails a delicate balance between encouraging people to share their (potentially distressing) experiences with you and attending to their (and your) safety. Being honest with participants about the potential risk from the outset both shows respect and allows them to make an informed decision about their participation. The same applies to organizations who may collaborate with you by assisting with recruitment.
Of course, minimizing risk to research participants is paramount. As this research progressed, it became clear that most participants were not naïve or uninformed about research, and were also aware of preconceived ideas on the topic, and especially the sub-topic of self-harm, with unprompted comments, including “I haven’t been raped” and “I’m not suicidal”. In addition, some participants expressed gratitude for the opportunity to take part: “I don’t get to talk about this stuff so it’s awesome to really be able to think and talk things through in my own way … “, “I’m trying to learn healthier coping methods and stuff, talking is meant to be one of them”. However, one cannot assume another’s knowledge, and for the sake of safety it is essential to provide potential participants with all relevant information. It became apparent that the same is true of potential research collaborators.
Even if written background information is supplied, it is a mistake to assume that the implications have been considered, or even that the material has been read. It never hurts to go back over key information verbally, checking that it’s clear, and inviting questions, whether dealing with potential collaborators or research participants.
Researchers who use qualitative methods are usually aware of how helpful it can be to establish trust with participants; to help them feel comfortable and willing to share information. This is also true when meeting with potential collaborators. What’s appropriate might vary, but may include allowing time at the beginning of the first meeting to simply chat in a general way, preferably over refreshments. As well as building rapport, this also provides an opportunity for all parties to raise concerns in a relaxed manner.
Qualitative researchers are often open to allowing participants to influence the topics discussed—to bring up relevant ideas and experiences that the researcher may not have anticipated. It is likely to be just as valuable to invite other stakeholders (such as the organizations described above) to express their ideas.
Conducting research on sensitive topics entails a number of possible challenges, in particular, minimizing possible risk to participants. There are various ways of addressing this, such as thorough provision of information and giving multiple opportunities to opt out, throughout the research process. Researchers may be tempted to screen out those for whom they consider the research may be “risky” or to edit the data collection. However, the ethical principle of respect for autonomy carries the obligation to allow potential participants to make their own decisions about their participation.
Depending on the topic, recruiting participants may also be difficult, and working with a suitable organization may help through offering assistance and advice to the researcher on specific issues, as well as directly with recruitment and providing support to participants. This will involve establishing a relationship that is mutually beneficial, based on an understanding of what each has to offer the other. Such research collaborations have the potential to greatly enhance the experience for all concerned, but must be built on a foundation of trust and reciprocity.
- Think of a research project that requires the investigation of a sensitive topic. How would you go about finding suitable participants?
- Imagine that you are explaining your research project to a fellow researcher. What are the most important things you would tell them? How might this differ if you were explaining it to a potential participant?
- During an interview the research participant begins to cry. What would you do?
- What might you do to ensure your own safety from distress?