Valuing the voice of lived experience of eating disorders in the research process: Benefits and considerations

Abstract

Although the inclusion of individuals with lived experience is encouraged within the research process, there remains inconsistent direct involvement in many mental health fields. Within the eating disorders field specifically, there is a very strong and increasing presence of lived experience advocacy. However, due to a number of potential challenges, research undertaken in consultation or in collaboration with individuals with lived experience of an eating disorder is scarce. This paper describes the significant benefits of the inclusion of individuals with lived experience in research. The specific challenges and barriers faced in eating disorders research are also outlined. It is concluded that in addition to existing guidelines on working with lived experience collaborators in mental health research, more specific procedures are required when working with those with eating disorders.

Incorporating the voices of people with a lived experience of mental health concerns (individuals with a current or past history, those healing and/or in treatment for mental health concerns and traumas) in the research process has been of growing interest and priority over the last several years (World Health Organization, 2013), and is being increasingly mandated by funding bodies. Within the research setting, the inclusion of lived experience perspectives (often referred to as ‘peer work’; Davidson et al., 1999) can be achieved through membership on project steering committees or via formal consultation during the development of research protocols. Less frequently, but perhaps of greater impact, are studies designed and conducted by researchers with lived experience, or studies undertaken in end-to-end collaboration with these people. Although it has been over a decade since the Australian Code for the Responsible Conduct of Research (National Health and Medical Research Council, 2007) advised that ‘appropriate consumer involvement in research should be encouraged and facilitated by research institutions and researchers’, as far as we are able to determine through a literature search, it appears that there has been a lack of direct involvement of persons with lived experience in research processes, specifically within the eating disorders (EDs) field. This absence is in stark contrast to the strong and beneficial lived experience presence in advocacy surrounding EDs and clinical practice.

Although not unique to EDs, consulting individuals with lived experience throughout the research process (including study design, implementation, interpretation and dissemination) has several benefits that contribute to the ability to conduct research that is meaningful. Advice sought on study design can identify important outcomes that may have otherwise been overlooked or not considered, and can highlight potential barriers to participation. Consultation on research implementation can improve the experience for participants in the study by ensuring content is comprehensible and administered sensitively. Individuals with lived experience can offer valuable perspectives on the interpretation of research findings, providing greater insight into plausible explanations for results that may otherwise go unnoticed. Moreover, lived experience involvement in the dissemination of findings throughout their network can increase the breadth of reach, therefore enhancing the translational capacity of research outputs, and strengthening the exchange of information. For the researchers, collaborating with people with lived experience can increase trust and balance power dynamics. It can offer the experience of being an ally, promote ethical research practices, and further encourage research with real-world significance to EDs. Furthermore, by carefully creating these partnerships, individuals within the research community who have historically not disclosed their experiences with an ED may also choose to engage, no doubt creating another dimension in the contribution to knowledge.

For people with lived experience of EDs, involvement as collaborators as opposed to being a participant in research can create a unique opportunity for connection to the self and others through reflection of learning. It can offer a sense of restorative justice and healing through reclaiming the narrative and advocating for the self, and others who are impacted now and in the future. The opportunity for people with lived experience of EDs to collaborate as researchers can change the experience of marginalisation to allyship and promote gains in research by sharing wisdom as a valued research member. Inclusive and respectful collaborations can also contribute to positive social effects such as feeling empowered, validated and heard, and increase trust in research.

Given the potential benefits, why has the inclusion of lived experience perspectives in ED research apparently been scarce to date? In addition to the broader challenges for involving people with lived experience as collaborators in mental health research (e.g. prioritising academic opinions), several specific barriers unique to ED research need to be considered. First, it must be acknowledged that there is an undercurrent of stigma around EDs, above and beyond what is seen in many other mental health diagnoses. Inadequate mental health literacy and stigmatising attitudes towards EDs are prevalent in the general population and extend to some healthcare professionals (Cain et al., 2017; Thompson-Brenner et al., 2012). For example, individuals with an ED are viewed by many healthcare professionals as vain, manipulative or difficult (Thompson-Brenner et al., 2012), and are often responded to with strong emotional reactions including avoidance and dehumanisation (Graham et al., 2020). There has been no investigation to our knowledge of whether these attitudes extend to the research community, yet stigma may play an active role in discouraging persons with lived experience from involvement in research processes. For example, although implemented with protective intentions, individuals with an active illness have been discouraged in the past from presenting at relevant conferences. This is in stark contrast to conferences in other mental health fields, such as voice-hearing, that actively encourage presentations from individuals with lived experience.

Quite separate from the existing stigma surrounding EDs, there are unique drawbacks that may have contributed to the reluctance to include individuals with a lived experience of an ED in research to date. Ethical concerns around the potential risks to people with lived experience of EDs may represent a formidable barrier to their inclusion in research processes, the most pertinent being the ethical imperative to ‘do no harm’. As the management and recovery of EDs is often highly precarious, environmental triggers such as increased exposure to ED-related content may contribute to the risk of relapse. This notion was demonstrated during a peer-mentoring programme for individuals with EDs, in which illness experiences were shared between ‘mentees’ (individuals with an active ED) and ‘mentors’ (an individual recovered from an ED), and resulted in increased ED cognitions and behaviours among mentors (Beveridge et al., 2019). Mentors, however, have also reported experiencing benefits such as increased connection with the self and others, and indicated that the mentorship helped them appreciate the wisdom they had gained in recovering from their past ED (Hanly et al., 2020).

The potential risks to individuals with lived experience of an ED when collaborating on research studies pose several ethical concerns for researchers. How to best manage potential risks and reduce the likelihood of harm during research collaboration is an issue of paramount importance. One way of achieving risk and harm reduction may be by assessing whether the individual is at risk of symptom exacerbation through their participation as a lived experience collaborator. However, such an approach is contiguous to ethical issues relating to preservation of autonomy, dignity of risk and personal boundaries. Where people with lived experience are involved in research through employment or collaborative relationships, it may not be appropriate for the researchers to undertake detailed monitoring of the person’s mental health, or make single-sided decisions regarding who can and cannot be involved. Lived experience collaborators may feel that their mental health is their own to manage, that they should make their own judgements about what they are capable of, and that experiencing symptoms should not disqualify them from collaborative or employment opportunities. This complex interplay of ethical concerns surrounding harm avoidance and preservation of autonomy will require a respectful and honest dialogue between individuals with lived experience and researchers.

In order to progress the active inclusion of people with lived experience in research processes, several questions should be addressed. How can we know that individuals have put themselves forward to share and reflect on their experiences without detriment to their mental health? Are there ways we can sensitively and appropriately acknowledge that re-sharing can bring unexpected emotional responses, and to sensitively question a person’s readiness for this experience? Is there a way in which we can foster a professional two-way, open dialogue of an appropriate level of disclosure to maintain respectful relationships and honour the autonomy of each person? What are the differences between how researchers evaluate someone’s current wellbeing and their ability to collaborate on research projects compared to how the individual with lived experience evaluates themselves? Whose evaluation is more reliable and valid? Is denying people the opportunity to be involved, based on our perceptions of their wellbeing, simply contributing to the silencing of their voices? Finally, what pressures might individuals with lived experience confront during the research process, and will they feel comfortable withdrawing their participation if their involvement is negatively affecting their health?

Clearly, there are many complexities involved in the safe and ethical inclusion of individuals with lived experience of an ED in research. As such, we see a clear need for the establishment of ED-specific guidelines, beyond those currently available for mental health research more broadly (Happell and Roper, 2007). We surmise that lived experience collaboration must offer an environment which fosters openness and support, and encourages self-monitoring of wellbeing and help-seeking, where required. It must also provide the option of withdrawing from the collaboration if needed, with no adverse effects to the professional relationship as a result. Careful guidelines for communicating and managing the research environment are also necessary to reduce power asymmetries and tokenism in the hierarchical research culture (Evans and Papoulias, 2020). Guidelines should involve developing boundary and role definitions to support autonomy, personal privacy and role responsibility between both parties.

Overall, it is clear that inclusion of individuals with lived experience has significant benefits for the future of ED research. To manage potential risks, appropriate additional ED-specific guidelines are required beyond those currently available for mental health research. These guidelines should be constructed in consultation with individuals with lived experience. Our suggestions frame only some of the issues that must be considered when developing such guidelines. These core issues are complex, and include awareness surrounding the risk of illness exacerbation while ensuring that autonomy is respected. We are optimistic that collaborating with people with lived experience in ED research will significantly advance the field.