Living with Experience in the Academy: Pressures to Disclose in Routine Research Activities

ABSTRACT

Lived-experience perspectives have gained increasing traction in social work research, presenting valuable opportunities for novel insights to inform policy, practice, and research. Yet these developments have perhaps outpaced our capacity as producers and consumers of research to consider their broader ethical implications for social work researchers with lived experience (particularly those with undisclosed experiences). Through a series of critical incident analyses, this article highlights ethical dilemmas researchers may face concerning disclosure of their lived experience, and how application of trauma-informed and ethical principles may assist in responding to these dilemmas.

IMPLICATIONS

• Social work researchers may face increased pressures to disclose their lived experience in the course of typical research activities.

• Trauma-informed and ethical research principles can be drawn upon to navigate these dilemmas.

• Academic and research institutions and bodies should consider the impact on researchers of processes which impel disclosure of lived experience.

KEYWORDS:

• Lived-Experience Academics
• Collegiality
• Social Work Research
• Social Work Researchers
• Ethics
• Ethical Principles
• Trauma
• Disclosure
• Indigenous Research
• Researcher Characteristics
• Disability
• Funding Grants
• Thoughtfulness
• Wellbeing
• Australia

In social work practice, policy, and research, lived-experience perspectives have gained increasing prominence. Recent examples of this phenomenon in Australian social work research can be seen in the diverse fields of out-of-home care (Mendes et al., 2022), criminal justice (Duvnjak et al., 2022; Johns et al., 2023), and mental health (Banfield et al., 2018; Chisholm & Petrakis, 2023), among others. Key research approaches forming part of the lived-experience movement include participatory action research, coproduction, and the leading of research by lived-experience researchers (Chisholm & Petrakis, 2023; Johns et al., 2023; Mendes et al., 2022).

In relation to lived experience among academics, three dominant identities are recognised: “lived experience-dominant” identities embrace an outward-facing lived-experience identity in their research endeavours; “academic-dominant” identities may acknowledge and apply lived experience while primarily adopting a nonlived-experience academic identity in their research activities; while for “fully academic” identities lived experience is present, but has little bearing on their identity as an academic researcher (Hawke et al., 2022). Crucially, Hawke and colleagues (2022) note differing implications of these identities, including the emotionally demanding nature of identifying primarily as a lived-experience academic, compared with the risk of dismissal of lived experience among academics who do not identify predominantly through these experiences.

Despite these challenges, uptake and advocacy for lived-experience perspectives in social work research is unsurprising in a profession underpinned by the principles of respect for persons and social justice (Australian Association of Social Workers, 2020). Furthermore, research indicates an overrepresentation of individuals with lived experience of early-life trauma and other socially stigmatised or oppressed identities among social work students (Black et al., 1993; Thomas, 2016) and indeed the helping professions more broadly (Bryce et al., 2023), which might also inform this supportive stance.

Ethical Considerations in Relation to Lived-Experience Research

Ethical considerations in relation to lived experience in Australian social work research are largely canvassed in the National Statement on Ethical Conduct in Human Research (National Health and Medical Research Council, Australian Research Council, & Universities Australia, 2018) and in the professional code of ethics (Australian Association of Social Workers, 2020). The value of beneficence in the National Statement (NHMRC, 2018) directs researchers to consider risk of harm to participants “and to others” (p. 12) relative to potential research benefits. When including lived experience of research participants or authors, the harms pertinent to consider include psychological harms such as “feelings of worthlessness, distress, guilt, anger or fear related, for example, to disclosure of sensitive or embarrassing information” (p. 13), alongside social harms such as “discrimination in access to benefits, services, employment or insurance; social stigmatisation”, and legal harms “including discovery and prosecution of criminal conduct” (p. 13). For research participants, these harms may be minimised by ensuring informed consent, alongside measures to maintain privacy and anonymity. It is unclear whether such measures also routinely are applied to lived-experience academics. Similarly, the AASW Code of Ethics (2020) has underscored the importance of privacy and confidentiality, advising the use of standards of ethical conduct when working with service users, “taking care not to intrude unnecessarily on service users’ privacy when seeking information” (p. 17), and, like the NHMRC National Statement (2018), emphasising the significance of informed consent in the collection and disclosure of personal information. Additionally, in the context of trauma and stigma often surrounding lived experience, social work researchers may draw on trauma-informed principles to navigate relevant ethical considerations for lived-experience research, including safety, trustworthiness, choice, collaboration, and empowerment (Blue Knot Foundation, 2021).

Methodological Considerations Relating to the Lived Experience of Researchers

Alongside the ethical considerations are methodological considerations in relation to lived experience-led or “emic” research in which the researcher is a so-called “insider”, having experienced the phenomena under investigation (Flynn & McDermott, 2017). In such research, the practice of reflexivity is intended to address the inherent double-edged sword, in which familiarity may permit a deeper understanding of the research topic, while requiring the researcher to “remain constantly alert to avoid projecting” their experience (Berger, 2015, p. 230). Such reflexivity has been described by Berger (2015, p. 220) as “the process of a continual internal dialogue and critical self-evaluation of [a] researcher’s positionality as well as active acknowledgement and explicit recognition that this position may affect the research process and outcome”. According to Secules et al. (2021), such reflexivity practices require researchers to identify, examine, and own their backgrounds, perspectives, experiences, and biases to strengthen research rigour and transparency. Such “explicit recognition” is effectively mandated at times, with multiple guidelines for the reporting of qualitative research requiring a description of researcher characteristics and reflexivity (O’Brien et al., 2014; Tong et al., 2007). Positionality or reflexivity statements are often included in the form of a short declaration of authors’ social, cultural or ideological position(s) in relation to the research topic (Secules et al., 2021). Within these declarations, authors discuss aspects of identity or experience that may have influenced their undertaking of, or approach to, the research. This positioning aims to provide transparency, to highlight potential blind spots, and to contribute to more nuanced and self-reflective research.

Decisions to Disclose Lived Experience

Disclosure of lived experience in social work learning, practice, and academic contexts are not always a matter of choice. Disclosure or exposure may come about through requirements for police criminal records checks (King, 2013), where the lived experience is central to the work, such as the experience of some Indigenous scholars (Grenz, 2023; Newton, 2021), or may be necessary for workplace adjustments, for example in relation to disability (Fox & Gasper, 2020). Authors’ positionality statements are informed not only by methodological considerations, but also by the authors’ assessment of safety and security within institutions. Australian research found that social work students are often reluctant to reveal lived-experience identities due to perceived shame and stigma, and the observed “othering” of service users (Newcomb et al., 2017). Indeed, research has identified “excessive self-disclosure” as one of many “Kisses of Death” among applicants to a graduate psychology program, which (depending on how it was communicated) could be construed as a “worry sign” or an “indication of poor interpersonal boundaries” (Appleby & Appleby, 2006, p. 20). Similar findings are reported regarding the disclosure of mental health issues by academics, which has been described as “fraught and frightening” (Fox & Gasper, 2020, p. 300), and strenuously counselled against. For example, one academic considering such self-disclosure in an ethnographic article was told it was a “bad idea”, “too risky”, and would “have a negative impact at work” (Fox & Gasper, 2020, p. 301).

Academics living with disability are often similarly wary of disclosure within institutions dominated by ableist performativity (Dolan, 2023; Mellifont et al., 2019). Such findings call into question the capacity of the social work values base to counteract the stigma of some forms of lived experience. These findings equally render understandable the decisions of social work students, professionals, and academics to withhold disclosure of all or some of their lived experiences (Dolan, 2023). Conversely, disclosure of lived experience in academia is also described as “a personal act of agency, identity and choice” (Fox & Gasper, 2020, p. 301), which carries “the possibility of challenging the social culture” of higher education institutions (see Fox & Gasper, 2020, p. 301; Gough, 2011).

The Current Study

The impetus for the current study arose from the authors’ (relatively) recent experiences, in the course of usual social work scholarship, of repeated requests and pressures to disclose lived experience, alongside references to the assumed nature of such lived experience. Despite the authors’ heavy engagement in social work scholarship for over a decade, such requests and pressures have only been experienced in the past two years. This may therefore represent a recent shift in the social work research landscape worthy of attention.

Method

A critical incident review approach was utilised to examine a series of occurrences relating to the lived experience of the authors in the context of their usual research activities (Fook & Gardner, 2012). A critical incident is “any happening which was significant to a person for whatever reason” (Fook, 2002, p. 98), the discussion of which can assist individuals to reflect on and develop learning from their practice (or research) experience. Critical reflection can be grounded in an array of theoretical approaches (Fook & Gardner, 2012). Our analyses adopted a relational approach (Ruch, 2009), which emphasised emotional aspects of experience, together with critical perspectives which encouraged awareness of power relations (Brookfield, 2005). Four incidents were explored.

Three of the four incidents explored in this research study occurred in a three-month period from June 2021 to August 2021 inclusive, while the fourth occurred in February 2023. For each, a description of the incident was provided, alongside a description of the dilemma(s) navigated by the authors and colleagues, the elected response, and the outcome.

Findings

Incident 1: Requested Disclosure of Personal Characteristics in a Journal Article Peer Review

The Incident

In line with reporting guidelines for qualitative research, the authors received the following feedback via peer review of a submitted journal article:

Suggest providing more information regarding the study authors (e.g., [personal attribute]). This would serve to counter the implicit (and problematic) assumption that the authors [lack lived experience of a nonmainstream identity]. I think additional information regarding the author’s [attributes, experiences, and personal beliefs] would be beneficial to understand the ‘lens’ [through which] the data was likely analyse[d]. – Peer reviewer

The Dilemma and Response

A discussion with coauthors ensued, during which authors raised discomfort and fear at disclosing the requested identities for various reasons, including experiencing these identities as fluid and stigmatised. The authors collectively discussed the simultaneously valorised and stigmatised aspects of lived experience in academia, and our personal challenges navigating these issues. A consensus decision was made to refuse to provide identifying information beyond professional experience. Following these consultations, we responded as follows to the peer reviewer’s comment: “We thank the reviewer for these interesting comments, which stimulated significant discussion between the authors about what it means to conduct [such research] … and in relation to our personal and professional identities”.

We subsequently detailed our dilemmas to the reviewer, explaining the reasons behind our refusal to provide aspects of the requested information: “ … Exposing authors’ personal … narratives, especially given the complex and evolving nature of these, did not feel safe in such a forum. For these reasons, the authors feel unwilling to elaborate on their [lived experience] in this article” and “While one author has lived experience of [removed for privacy reasons], which informs their research lens, it is the author’s preference that these histories are not publicly disclosed for privacy reasons”.

We also sought to supply the requested information, where the authorship had consented to it, for instance: “The professional experience of [we authors] in working with [the research population] is outlined … Additional information as to Author 2’s research experience in the field is supplied”.

Outcome

The article was published without further identifying information from the authors.

Incident 2: Precarity of Disclosure of Indigenous Positionality

The Incident

The following feedback from a non-Indigenous peer reviewer was received by an Indigenous author of the current article: “More details of the researcher’s positionality should be given, not just in terms of their own identification but how they related to participants. This is particularly important since Indigenous research methodologies emphasise relationality”. Upon disclosure of the author’s detailed lived experience, including their relationship with the community forming the subject of the research, their capacity for objectivity was critiqued by the peer reviewer, who assessed the paper as “very poor” in relation to scientific rigour.

The Dilemma and Response

Indigenous research is precarious in its relation to lived experience. Indigenous reviewers demand to see Indigenous authors authoring Indigenous-themed research, and limited or obscure disclosure of Indigeneity can lead to criticisms of the research being insufficiently Indigenous in its standpoint. Conversely, other reviewers may demand objectivity. Establishing relationality while meeting standards for objective scientific rigour can lead to an insoluble contradiction for Indigenous researchers.

Outcome

The paper was withdrawn from publication.

Incident 3: Assumed Lack of Lived Experience by Grant Assessors

The Incident

The following feedback was received from an anonymous assessor of a grant application. The proposed research focused on a population with the lived experience of A and B (kept confidential for this example), within which people with the lived experience of C were overrepresented.

… what looks to me a glaring omission in the team is [a researcher with lived experience of C] (unless I have missed that). Given the very high overrepresentation of [lived experience C] in [the research population] (as acknowledged in the application), it is completely inappropriate for a study of this kind to not have [a lived experience C] researcher on the team. – Grant reviewer

The Dilemma and Response

The assessor’s feedback, while justified, revealed hidden assumptions, the first of which was that a researcher with the lived experience of C would elect to disclose this experience. Conversely, no grant assessors inquired as to whether individuals with the lived experience of either A or B were part of the research team, perhaps underpinned by an (incorrect) assumption that this would not be the case. Members of the research team struggled with the decision of whether to disclose the lived-experience identities of A and B, ultimately opting not to do so.

Outcome

The grant was not funded.

Incident 4: Requested Disclosure of Personal Characteristics in the Research Funding Process

The Incident

Like the first-outlined incident, the author and colleagues received another request to disclose personal information, on this occasion from a funding body. Specifically, as part of assessing a funding application, more information was sought on the lived experiences of the research team in relation to ethnicity (e.g., Aboriginality and culturally and linguistic diversity), systems involvement (e.g., child protection and criminal justice systems), and other characteristics (e.g., disability).

The Dilemma and Response

This request was discussed among the research team, some of whom expressed shock and discomfort that such private information was requested. The research team decided to express this discomfort to the funding body, which was communicated as follows:

… I was a little concerned about the second point … which appears to ask [research] team members to disclose lived experience of a potentially sensitive nature, including involvement with child protection and criminal justice systems. I would not be comfortable disclosing such lived experience … and feel uncomfortable asking team members to do so. – Research team

The funding body responded by indicating that they were required to record this information due to a priority being placed on inclusion of lived-experience perspectives. Additionally, the funding body stated that it would be sufficient for team members to disclose this information to the Chief Investigator, who could then disclose it collectively on behalf of the research team. While such a request may not seem altogether unreasonable, it presented further predicaments around informed consent due to the lack of familiarity of the research team members with one another, privacy issues, coupled with the pressure placed on academics to secure research funding. Ultimately, it was decided to collectively and anonymously report to the funding body the lived experience that each research team member was comfortable to disclose, coupled with the following statement:

This collective lived experience informs our understanding of key issues that require further probing in this area, as well as attunement and sensitivity in relation to data collection instruments and processes, and presentation of data/findings. This lived experience also underpins the team’s collective desire to be involved in this work in the first instance, and the value which we place on ensuring that the research is conducted with rigor, integrity, and produces a high-quality result able to impact policy, practice, and future research.

At the same time, the research team recognise that our own lived experiences do not reflect the diversity of lived experience [of the research populations] in the Australian context. As such, while lived experience informs the work, it does not replace research rigour. – Research team

Outcome

The project was funded with the consented collective and anonymous lived-experience disclosure of the research team, as described above.

Discussion

This article sought to highlight complex dilemmas concerning academics’ decision making around disclosure of lived experience in the context of social work research. This was demonstrated via analysis of a series of critical incidents experienced by the authors in the course of typical social work research activities, over a relatively short period. In contrast to the first three incidents, which concerned requested disclosure of lived experience for methodological purposes, the fourth incident arose due to an administrative demand on the funding body. This in turn illustrates risks of the increasing commodification of lived experience on social work researchers, who may feel compelled—potentially to their detriment—to disclose lived experience of often stigmatised identities in the light of increasingly limited research funding. In navigating these dilemmas, the researchers adopted trauma-informed principles, including safety (prioritising researcher emotional safety), collaboration (group decision making), and empowerment (the right to refuse disclosure) (Blue Knot Foundation, 2021). These principles in turn reflect adherence to the ethical imperatives of beneficence, informed consent, and privacy (AASW, 2020; NHMRC, 2018), and the adoption of relational and critical perspectives in the critical incident analysis process (Fook & Gardner, 2012). It is hoped that the examples provide other researchers the assurance to make known any discomfort in response to requests for disclosures of lived experience, and to push back on such requests if necessary.

The critical incident analysis highlights the increasing regularity with which social work academics may be requested, or feel compelled, to disclose lived experience of stigmatised identities during normal research processes. These observations possibly reflect the construction of lived experience as “other” from the “ally-centric lens” of academic and research institutions and processes (Grenz, 2023, p. 221). Paradoxically, academics for whom providing positionality statements is fraught with risk are those with whom the academy professes allyship. The findings emphasise how in seeking to champion the inclusion of lived experience, the academy and surrounding processes (e.g., grant application, grant/peer review, and ethics processes) may neglect to apply the basic ethical social work principles to researchers (e.g., informed consent, attention to risk of harm, consideration of privacy) as are expected for research participants and service users (AASW, 2020; NHMRC, 2018).

Conclusion

The increased attention to lived-experience voices and perspectives presents valuable opportunities for social work research. Yet these developments have perhaps outpaced our capacity as producers and consumers of research to consider the broader ethical implications for social work researchers with lived experience. Given this oversight, researchers should be alert to the responsibility to apply ethical and trauma-informed principles to themselves and colleagues, particularly members of their research teams whom they supervise. In highlighting these experiences, it is hoped greater thoughtfulness may be brought to these research processes in the academy and beyond.

Disclosure Statement

No potential conflict of interest was reported by the author(s).