Abstract
Philosophical assumptions of the participatory worldview collide with the biomedical framework on which procedural ethics have been grounded. Consequently, obtaining or approving ethical clearance for participatory research can be challenging. Researchers may resent being pressed to water down participatory features to suit institutional requirements. Co-researching community partners’ trust towards academia may be compromised at the outset if the REC comes across unappreciative of their tacit knowledge or is insensitive to their self-determination appeals. REC members may be conflicted over unfamiliar dilemmas. A report detailing effective collaboration during design and approval of a protocol for a photovoice study aimed to empower ADHD women is provided. This collaboration culminated in study plans which satisfied one and all’s requirements. In an attempt to include co-researcher voice in publications and promote more positive perceptions of REC oversight in participatory scholarship, recommendations by academic and community partners and the REC chair who is overseeing this project are advanced. Many lessons were drawn from this positive experience by those who engaged in it. Ethicality, in the context of participatory research is certainly not straightforward, but its pursuit need not be a battlefield. It requires the mobilization of values embedded in the participatory worldview and, akin to the research itself, holds transformative potential.
Keywords
Introduction
Previous abuse of human research subjects prompted the enactment of the Declaration of Helsinki in 1964 by the World Medical Association (Ndebele, 2013). Ethical principles governing medical research involving humans were, thus, established. In 2008 the requirement of submitting a protocol of an experimental procedure, to a specifically appointed independent committee before starting the procedure, was extended to any research study (World Medical Association, 2013). ‘Procedural ethics’, the phrase coined by Guillemin and Gillam (2004) to refer to this process were, therefore, ‘custom-made’ for quantitative biomedical research since their inception and continue to fall short of the flexibility necessitated to guide qualitative health research (Potthoff et al., 2023). Fittingness of procedural ethics to qualitative research underpinned by a participatory research worldview is considered even more problematic (Becot et al., 2023; McDonald & Capous-Desyllas, 2021; Teti, 2019). Analogously, ongoing responsiveness to ethical quandaries encountered in the trenches of knowledge generation, formally denoted as ‘ethics-in-practice’ by Guillemin and Gillam (2004), need to be supplanted by an ethical framework which foregrounds the relationality of participatory research.
Heron and Reason (1997) introduced the participatory research worldview and appended it to the classification of paradigms previously developed by Guba and Lincoln (1994). Participatory research, an umbrella term for research borne out of this paradigm, has been gaining traction since the turn of this century in view of its capacity to increase significance of research questions, communities’ self-efficacy, and utility of research outcomes (Macaulay, 2017). Constant attention to power differentials between all knowledge workers (Enderle & Mashreghi, 2022; Streck, 2013), an absence of unequivocal methodological guidelines, (Creswell et al., 2007) and an abundance of ethical controversies (Latz, 2018) complicate the conduction of participatory research.
The participatory research paradigm acknowledges the subjective-objective nature of reality and, consequently, impels an expansive epistemology that recognizes diverse ways of knowing to understand this subjective-objective reality. Collaborative and democratic forms of inquiry, therefore, are best suited to ensure critical and intersubjective mobilisation of different ways of knowing. This critical intersubjectivity is valued predominantly for its potential to tangibly enhance human realities (Heron & Reason, 1997). Akin to this worldview, self-help organizations for psychiatric consumers were forged from disgruntlement with the status quo and both systems believe meaningful social change necessitates the fusion of vernacular and professional knowledge (Nelson et al., 1998).
This knowledge synthesis constitutes the core of an ongoing community-academic research partnership intent on empowering Maltese adult ADHD women and this article reports on the navigation of the study’s procedural ethics. In spite of increased ADHD awareness, insufficiencies in the recognition and treatment of ADHD among fringe minorities and women prevails (Abdelnour et al., 2022; Garb, 2021). The partnership is employing the photovoice method, which is exclusive to participatory research and was first utilised among women from the Yunnan province of China to improve their reproductive health outcomes (Wang & Burris, 1997). Photovoice allows groups who have historically been marginalised to speak back to society using photographs taken and analysed by members of the group. In the current project, ten Maltese adult women with an official ADHD diagnosis have been supported by the academic team to identify community-specific issues to which power brokers need to be sensitised. The main output of this first study meeting was an agreement upon a set of themes which would guide co-researchers during picture-taking fieldwork. Photographs which do not correspond to any of these themes will still be considered as they may attest to successive iterative reflection and this aligns with the method’s emancipatory and transformational constitution.
Original SHOWeD Questions and the Set of Questions Which Will be Used in This Study to Guide Group Discussion of Photographs
This report starts off with an inventory of epistemic tensions, ethical issues identified from photovoice scholarship, and challenges anticipated by the Maltese ADHD community. Subsequently, an explanation of how a protocol for this research was designed to respond to determined issues is provided. The latter includes an account of negotiations with the Research Ethics Committee (REC). Ensuingly, ways in which the protocol was modified following suggestions by co-researchers will be outlined. The article rounds off with the academic research team, co-researching community partners, and the REC chairperson who oversaw procedural ethics advancing recommendations at corresponding groups involved in participatory research. Direct involvement of all partners in drafting and publishing these recommendations aligns with a participatory ethos. Furthermore, it supplements extant methodological knowledge by decisively addressing the underrepresentation of co-researcher reflections in the literature (Marks et al., 2018). Since the relationship between participatory researchers and REC members may be tense (Boser, 2007), Wolf (2010) urges participatory researchers to publish their experiences of REC oversight of their projects to disseminate ideas for resolution of tensions. This paper responds to this call and advances recommendations after a thorough charting of field-specific challenges which, simultaneously, engenders an appreciation of the situated and reflexive nature of participatory research.
Identified Ethical Issues at Play
Prior to designing a research protocol for REC approval, the academic research team understood it was necessary to take full stock of all the ethical issues at play. This involved a thorough scrutiny of the participatory research and photovoice literature. However, this had to be supplemented with consultations with the Maltese ADHD community. This dialogue served to sensitise the team to the specific realities and needs of the community and to the sociopolitical climate in which it subsists. Thus, the executive committee of ADHD Malta, a non-governmental organization (NGO) which supports Maltese ADHD individuals and families, was met a priori. During this meeting, the organization’s honorary president agreed to act as research gatekeeper and facilitate recruitment of co-researchers. A structured catalogue of ethical issues identified from the abovementioned sources is presented in this section.
Epistemological Tensions
Procedural ethics epistemologically clash with participatory research in various ways. RECs typically envision a research study to be owned by the researcher, who needs to clearly detail what research participants are going to be subjected to in a research protocol. Protocols would, then, be judged by the extent to which research participants’ rights to beneficence, non-maleficence, autonomy, and justice are upheld. Contrarily, participatory research construes flattened power gradients in research as the fulcrum of ethical rectitude. A community-academic partnership is a co-owned and co-designed project. Becot et al. (2023) identifies RECs’ requirement to recruit participants after protocol approval as the quintessential embodiment of the incongruity. Furthermore, Teti (2019) argues that since RECs are commonly geared to determine hazards to individual participants, they may not be fully aware of ways in which participatory projects may expose an entire community to risk or harm.
Methodological Tensions
Participatory research studies are iterative and longitudinal. Moreover, projects conducted within a community require constant adaptation to shifting power relations or contextual factors. The inevitable fluidity and uncertainty defies the steadfast approach customarily associated with procedural ethics. When researching and writing with rather than about communities, ethical dilemmas will keep arising and the approved protocol cannot be discerned as a fixed roadmap. Additionally, Neale’s (2013) deployment of ongoing ethical vigilance in qualitative longitudinal research and Guillemin and Gillam’s (2004) ‘ethics-in-practice’ insufficiently cater for intersubjective, contextual, and processual participatory methods (Van Goidsenhoven & De Schauwer, 2022). When knowledge production transmutes to knowledge co-production, researcher-deployed ‘ethics-in-practice’ must make room for an approach to research ethics which is negotiated continuously by all knowledge workers. Even more reflexive participatory researchers may have vested interests in their projects or may not fully discern how certain research practices inhibit respect towards experiential knowledge. Therefore, Groot et al. (2022) contend, all knowledge workers’ conscientious attention to relationships is the conduit to the expanded ethicality participatory research beseeches.
Moreover, the photovoice method brought along its own set of ethical convolutions. Visual research methods, initially relegated as ‘unscientific’, are increasingly being appreciated in view of their ability to generate more authentic research outputs. However this constructive shift, Robinson (2011) notes, ironically calls for greater ethical diligence as artefactedness of research outputs subliminally dims the critical gaze of research beneficiaries. Moreover, photovoice ethics are complex because fieldwork involving photography is conducted by co-researchers belonging to a vulnerable community. Cox et al. (2014) identify issues of ownership, identification, and representation as some of these complications, adding that they are seldom addressed in procedural ethics. Additionally, photovoice’s imperative to precipitate social change, in and of itself, generates ethical debates (Johnston, 2018).
Community-Specific Tensions
ADHD Malta’s executive committee contributed to this preliminary stage by anticipating other ethical considerations. The academic research team was warned that the longitudinal nature of the project together with the heightened level of co-researcher participation it involves may pose some challenges. ADHD individuals often struggle to sustain attention, focus, and motivation (Modesto-Lowe et al., 2013), may be forgetful (Rapport et al., 2022), and emotionally overwhelmed (Ryckaert et al., 2018). Moreover, recruited co-researchers who decide to quit may be retraumatised, as many ADHD people keep tormenting themselves over past projects they failed to complete or courses they withdrew from (Gafford, 2024).
Design of the Research Protocol
Albeit not being required by the REC, a risk/benefit estimation designating the whole community as participating entity was imperative. This first ethical obligation required the researchers to verify whether the community of ADHD females to be empowered felt powerless. Failure to do so could propagandize, and possibly concretise, an illusory state of disempowerment. Tarrant and Hughes (2020) describe this negligence as the assignment of unfounded ontological purchase to a community’s vulnerable footing. A two-pronged approach supplied this verification. A mixed methods systematic review was conducted to locate, review, and synthesise latest evidence confirming ADHD girls and women are marginalised. However, in resonance with the disability rights movement maxim ‘nothing about us without us’ (Reyes and Iglesias, 2023), the executive committee of ADHD Malta was consulted to elicit its viewpoint. NGO executives were enthusiastic about the project. Additionally, they declared that although ADHD Malta has relentlessly advocated for the needs of the ADHD community among government officials and the local psychiatric and educational establishments, no animosity with these sociopolitical institutions had ever developed. Albeit not guaranteeing policy maker responsiveness to community partners’ appeals, the absence of overt antagonism in the sociopolitical climate augured well for the study’s profit.
To ensure co-researchers resolve any distress which may develop as a consequence of participation, provision of free psychological professional help from a local mental health service provider was secured. Following an agreement with ADHD Malta, the protocol specified that co-researcher safety would be promoted by ascertaining that all study group interviews would be held at NGO premises. Additionally, this decision underscored the academic research team’s pledge to cede power and uphold ownership of the wider ADHD community.
Protocol submission for review by the REC was fraught with apprehension. In view of the novelty of visual research methodologies and the recognition of participant anonymity as a cornerstone of research ethical codes, complications surrounding issues of identification were anticipated. There was concern that the REC might demand de-identification of photographed individuals. Photovoice literature was consulted and a robust rationale was built in preparation for negotiations to settle any such quandaries. Discussions surrounding issues of identification were initiated with the REC prior to protocol submission. During this dialogue, the academic research team debated that retouching photographs would severely compromise the integrity of a method committed to uphold the right to self-determination of the community it is setting out to empower (Creighton et al., 2018). The REC was receptive to this argumentation.
The study protocol submitted banked on the meticulous three-staged consent form process recommended by Wang and Redwood-Jones (2001). Over the years, this guidance has become a methodological sine qua non. The stringent mechanism subsists of a conventional consent form stipulating conditions of co-researcher participation, a second form via which co-researchers obtain written permission from persons prior to photographing them, and a final form whereby co-researcher ownership of photograph artistic copyrights is declared. The latter, moreover, permits co-researchers to qualify provision of individual photographs for study purposes. These documents construe consent as a fluid agreement and allow repeated and liberal provision and withdrawal of permission. However, they explicitly state that photographs for which authorization to disseminate was acted upon may not be retrievable upon consent withdrawal.
The ethical training session for co-researchers is considered another indispensable component of a photovoice project. Notwithstanding its importance, with the exception of Hannes and Parylo (2014), published accounts of this training are not sufficiently detailed. REC members not familiar with participatory research may fail to grasp the importance of this training. It is necessary to keep in mind that co-researchers become research associates in community-academic partnerships and, consequently, require a sound research ethics base. The protocol stipulated that session content would cultivate respect towards photograph subjects and the research itself, and engender cognizance of safety and project ownership rights. Audio-visual resources, frequent breaks, and the promotion of liberal movement would be introduced to secure engagement and information recall with this particular group. Training format was planned to lean heavily on dialogue and role-play to enkindle community capacity building, which has been identified as a quality outcome of participatory research (Viswanathan et al., 2004).
The aspiration to give voice through photographs ushers in issues of representation. Once again, RECs may not be cognizant of the ethical prerogative of authenticating voice. The designed protocol prioritised candid representation of community voice by stipulating that photographic training for co-researchers would only feature basic camera operations and a few ideas for boosting discursive potential of photographs. This would reduce the likelihood that the photographs reverberated peripheral messages. Moreover, the protocol specified that disposable cameras would be used. Instantly gratifying digital cameras and smart phones have culturally conditioned camera use. The researchers felt that disposable cameras provided restrictions to instant viewing, number of exposures, and technical functions and would, thus, prompt co-researchers to reflect on political mileage of photographs rather than aesthetic appeal. Study analytical plans shored up authentic representation of voice by means of member checking of researchers’ interpretations. Candela (2019) promotes member checking in qualitative research to boost validity of findings and participant reflection. Within the context of a method which claims to liberate silenced groups, an additional ethical rationale emerges.
As mentioned earlier, ADHD Malta executives had indicated the degree of co-researcher involvement should reflect community-specific vulnerabilities such as organizational difficulties and limited attention spans. Therefore, group contextualization of photographs by co-researchers could not be protracted further than 2 hr. If the exhibition is the climax of a photovoice project, its hub is group contextualization of photographs. This is where critical intersubjectivity, identified by Heron and Reason (1997) as a vital methodological component of research conducted within the participatory worldview, is mobilised. Photovoice’s Freirean rooting discerns profound dialogue as the pathway to ensure transformative and liberatory outcomes (Beckett, 2013). Furthermore, feminist theory, the other theoretical pillar of the method, stresses how a standpoint needs to be forged among an intersectional marginalised group (Higgins, 2016).
A dilemma surfaced as the duty to respect co-researchers’ ADHD-related struggles conflicted against the methodological requirement of including a lengthy dialogue session. Eventually, the protocol featured a compromise whereby co-researchers were split into three groups for participatory analysis. This automatically tripled time available for dialogue without further inconveniencing co-researchers. Whilst this arrangement is preferred to individual contextualisation of photographs, it still dampens critical intersubjectivity and is acknowledged as a limitation of this study.
Axiologically, participatory research is about human flourishing and the value of knowledge is seen to lie in its ability to bring about positive change (Reason, 1998). Since social change is contingent on factors extraneous to researcher control, framing photovoice as a transformational agent to a vulnerable community becomes problematic for ethical reasons. Aptly, photovoice empowerment has evolved to become more concerned with process, whereby reflection and identity reconstruction represent equally appropriate forms of empowerment (Groot et al., 2021; Seitz & Orsini, 2022).
The burgeoning consciousness about the under recognition of ADHD or its misdiagnosis among females has barely reached Malta’s shores. In a study commissioned by Maltese parliament to improve services for neurodiverse families, Azzopardi et al. (2023) report that being diagnosed with ADHD in adulthood is an arduous process in Malta and one which may lead to prescription of psychotropic medication for other conditions. Therefore, whilst the current project is likely to contribute to raising awareness, expectance of immediate change may be unrealistic. Correspondingly, researchers planned steps in the protocol to ensure co-researchers would not feel deceived or anguished if a palpable response from society was not registered.
An operational definition of empowerment would be coined by co-researchers themselves during the first study meeting. Moreover, to stress the merits of personal transformation, maturing irrespectively to policy change, the protocol incorporated the creation of an additional set of photographs. The latter would not be intended for exhibition but would document each co-researcher’s photovoice journey. Furthermore, a post exhibit, third focus group interview was appended to the standard method to explore co-researchers’ perceptions of photovoice process and outcomes. This exploration would be initiated through discussions of the additional sets of photographs. This unconventional third meeting would also boost the study’s discursive validity, a reconstructed validity criterion proposed for participatory research by Lindhult (2019). Discursive validity is an indication of the participation, dialogue, and democracy imbued in the inquiry process (Lindhult, 2019). Thus, entrusting evaluation of the project to co-researchers is another way in which the researchers plan to infuse participation at all stages of the research process.
The protocol was approved by the REC on condition that the academic research team seeks permission from co-researchers’ psychiatrists prior to involving them in the project. In the context of an endeavour attempting to empower ADHD women, the requirement was ironic and disheartening. However, it could not be contested as it emanates from sub-article 35(1) of the Maltese Mental Health Act (2012). The situation echoed Janes’s (2016) reminder that impermeability of any structures of authority will often abate the democratic paradigm shift of participatory research. All this served to ground the researchers in good time to the reality that they would be working against but within hegemonic frameworks. It was an opportunity to understand the ethical obligation of being transparent with the community about not ever being able to completely flatten power levels within the partnership itself or guaranteeing policy change. As Kester (1999) articulates it, to believe that discursive photography can assuredly alter power imbalances in society is naïve, as it discounts “…the manifest differential in power relations that pre-conditions participation in discourse long before we get to the gallery, community center or meeting room.” (Kester, 1999, p. 5).
Co-researchers who were followed by a psychiatrist reported no difficulties in obtaining consent to participate in the study. Seemingly, therefore, the imposition did not affect the project. However, it engendered a critical appreciation of competing societal discourses surrounding neurodevelopmental conditions among all knowledge workers. On the one hand, the medically-constructed ADHD diagnostic category ascribes a disordered status to individuals who present problematic symptoms and meet diagnostic criteria. Contrastingly, a neurodiversity model frames ADHD as a different way of being in the world and makes room for a dignified appreciation of its strengths. It is hoped this photovoice study will instigate the deployment of a neuroqueer feminist lens which critically reconciles these competing discourses. Johnson (2021) claims this standpoint denounces ablism along with sexism and suggests that psychiatric constructs can be inhabited critically and flexibly. When a diagnostic category is poached in this fashion, Johnson (2021) purports, acknowledgment of struggles and access to treatment and support can subsist in tandem with the sense of agency which empowers individuals and communities to define themselves on their own terms. The imposed legal obligation might be a starting point for this critical reflection. Moreover, all knowledge workers agreed the research gatekeeping authority, legally supplanted to the psychiatric establishment, should be ‘exploited’ by co-researchers to initiate localised awareness about the project whilst obtaining consent.
Co-researcher Protocol Modification
Although not formally required by the REC, the researchers felt it was imperative that recruited co-researchers are made privy to the approved research protocol and allowed to suggest modifications. Since they could not participate in its design, this was viewed as a decent alternative. Once again, this phase was imbued with tension as any major modifications would introduce considerable delays to a project which has a stipulated deadline. However, the desire to set off on the best foot prevailed and co-existed with the certainty that the success of the venture pivoted on its level of co-researcher participation. Since the protocol had been conscientiously drafted after iterative consultations with participatory and photovoice scholarship, ADHD Malta executives, and the REC, co-researchers agreed almost completely to its specifications.
The manner by which co-researcher recruitment actuated is detailed in the coming section. Among the individuals who expressed an interest in participating in this partnership titled ‘Empowering Maltese adult ADHD women* through photovoice’, there were some who endorsed a non-binary gender identity and sexual orientations varied. Initially, the protocol had specified that only individuals assigned a female sex at birth and identifying with the female gender could participate. The researchers understood that the liberatory project, which had been conceived to address the under recognition of female ADHD, was itself denying the release of more subdued voices within the marginalised group itself. Frisby et al. (2009) recount how newfound privileges rallied for by first wave feminists left many women affected by other axes of disadvantage oppressed. Consequently, through dialogue with the ten women who eventually accepted to participate, ‘women’, for the purposes of this partnership was officially redefined as any individual assigned a female sex at birth irrespective of gender identity, expression, or orientation.
At this point another ethical dilemma arose. Some knowledge workers were concerned about the omittance of the trans community in this definition. Indeed, two critical premises render this omittance particularly unsettling. Firstly, it ensued during the contemporary global resistance to LGBTIQ rights. Ayoub and Stoeckl (2024) posit that this mounting pushback intentionally weaponizes pluralist democracies to uphold the predilection of traditional values over individual human rights. Furthermore, the ruling runs epistemologically counter to a research paradigm that esteems the axiological foundations of democracy and maintains co-construction of diverse knowledge at its core. Within the research group it was argued that individuals assigned a male sex at birth, who later identified as females, are likely to experience the same discrimination faced by the rest of the group. However, as McConnell et al. (2021) explain, Minority Stress Theory and Intersectionality Theory enlighten understanding of lived experience of sexual minorities by underscoring how intersecting minority identities are often complex as they hold vernacular conflicts. Accordingly, the convergence of ADHD and transgender cannot and should not be assumed. This would negate photovoice’s first-person viewpoint and constitute appropriation of transgender voice.
Knowledge workers ultimately felt that since nobody from the trans community accepted to participate, it would not be ethically correct to claim the eventual co-constructed identity captures its experiences too. Unanimously, it was agreed to verify the decision is ethically sound by seeking autochthonous advice from the local Sexual Orientation, Gender Identity, Gender Expression and Sex Characteristics (SOGIGESC) Unit. The SOGIGESC Unit confirmed that the operational definition was solid and fair and suggested acknowledging the exclusion of trans women as a limitation of the study. Moreover, the recommendation to add an asterisk next to the term ‘women’ in the title was taken up. In addition, knowledge workers decided the public exhibition ought to include an abstract photograph which would represent trans women, any self-diagnosed ADHD women who could not afford to pursue an ADHD assessment privately, and any group affected by axes of oppression the team is not aware of. It was felt that an abstract photograph would effectively remind society about sidelined realities whilst circumventing misrepresentation concerns. Moreover, in the study’s write-up ADHD research among trans females will be foregrounded as a future research priority.
Community co-researching partners, additionally, reverted to the academic team with an appeal for enhanced project ownership in the form of co-authorship of publications emanating from the research. Evans-Agnew et al. (2022) agues compensation of co-researchers palpably demonstrates profit of their vernacular knowledge. Since this project is not funded the researchers willingly relayed this appeal to the REC, in an effort to supplant monetary compensation with academic recognition. The latter was coveted by co-researchers as they felt their ADHD had gotten in the way of their academic advancement. Additionally, this appeal revealed itself as an optimal opportunity for shoring up community capacity building. Once again the REC responded favourably to our request. This collaboration materialised in the publishing of this conjoint article, the first tangible output of this community-academic partnership.
Fieldwork ‘Failures’ and Internal Dilemmas
While the messiness of participatory projects in the community and issues surrounding reflexivity have been debated extensively, few participatory researchers have been bold enough to publish accounts in which downright fieldwork failures are exposed. Frazier (2021) refined participatory scholarship with vignettes of fieldwork failures from her study with resettled refugees. Defeats are not merely normalised in her report but, additionally, valued for their potential to uncover insights and engender the humanity required to conduct participatory research. Freire writes in his last book ‘Pedagogy of Indignation’ how a liberator must be “…free of arrogance, which intimidates and makes communication not viable; of sufficiency, which prevents the sufficient themselves from recognizing their insufficiency; of excessive certainty of being right; of theoretic elitism.” (Freire, 2015, p. 13). Attempting to assume this unpretentiousness, this section supplants a portal that reveals the researcher’s own internal tensions and project shortcomings.
The researcher was diagnosed with an anxiety disorder upon an initial ADHD screening two years prior to study commencement. The current doctoral project was designed because she still strongly suspected she was ADHD. As the processes outlined in this paper unfolded, a growing desire to seek a second assessment developed in tandem with the apprehension that another negative outcome would somehow impact the personal meaningfulness of this project. Ultimately, the exigency to clarify her insider/outsider status was registered and, ensuingly, the researcher was formally diagnosed with ADHD. Nonetheless, she could not ignore the overlap between ADHD and attachment trauma and engaged in a never-ending quest for the punctilious pathway to her symptomatology instead of focusing on treatment options. Moreover, she realised she had embarked on this innovative project because she knew that her motivation and focus would only be sustained if a strong element of challenge was introduced. Self-reproachful thoughts surfaced as complications arose. These internal tensions were at play throughout procedural ethics.
On hindsight, the eagerness to start off the current project by addressing ethical clearance was a cardinal faux-pas. To the academic partners’ defence, the urgency stemmed from awareness of the challenges involved in drafting a research protocol for a participatory study employing visual research methods. However, thorough familiarity with philosophical and theoretical underpinnings should have preceded consultations with the REC and protocol formulation. Providentially, the REC remained accessible and understanding whenever the academic research partners revisited and revised previously agreed upon procedures.
Undoubtedly, co-researcher recruitment has been the phase which unravelled less adequately since project launching. A poster call for co-researchers was published on ADHD Malta’s closed Facebook group by an intermediary. Basic study details and clear indications of how to connect with the researcher were supplied. However, the term ‘co-researcher’ generated an academic discussion on the Facebook group. Intellectually oriented NGO members argued participants would be research subjects not co-researchers. The intermediary collaborated by posting replies to any comments in the researcher’s stead. The debate may have discouraged ADHD women without a scholarly bearing as all those interested in participating were graduates. To redress this bias, the intermediary was asked to dispatch an electronic correspondence to all ADHD Malta members wherein project concept was explained exhaustively in simple terms. Finally, a final call was published on the NGO’s Facebook Group clearly stressing the need for specific social identities (singlehood, non-graduate, and transgender). Besides the fact that no single or transgender females came forward, the graduate social identity conspicuously prevails among co-researchers. Since photovoice purports to dismantle totalising assertions (Fricas, 2022), the resulting repercussions on the group’s representational capacity and the way power may be negotiated within it jeopardize the study’s anticolonial stance. The women who self-diagnosed ADHD and had to be turned down from study participation spring back to mind here. It may well be that co-researcher privilege, be it socioeconomic or any other form, is also a consequence of the systemic inequalities faced by the female ADHD community. The study then becomes a social space which is reinscribing the injustice it is claiming to subvert. A quintessential way out of this impasse was unattainable and the study had to proceed with this realisation.
Recommendations
In spite of the ethical convolutions identified it has been possible to finalise a research protocol which is in alignment with the major assumptions of the participatory worldview, demonstrates fidelity to the photovoice method, honours community partners’ needs and aspirations, and satisfies REC specifications. We feel recommendations can be drawn from our positive experience to facilitate protocol design for participatory research. These are being advised by the three major partners (the academic research team, co-researching community partners, and the REC chair) and targeted to corresponding groups. For each group, recommendations are supported with scholarly rationales and contextual field details and, additionally, presented more succinctly in a box.
Recommendations for Participatory Researchers by Academic Partners
The profit of immersion into the philosophical and theoretical underpinnings of a research project cannot be stressed enough. In this case, this involved a sound grasp of the assumptions of the participatory worldview, the major tenets of participatory action research, and the three foundational theories of the photovoice method (Freire’s critical pedagogy, feminist theory and photography). Participatory and feminist research requires researchers to challenge conventional ideas about research and to truly figure themselves as guests rather than hosts of research. This shift in perspective calls for researchers to adopt what Smith (1988, as cited in England, 1994) refers to as the supplicant role. Supplication involves a readiness to expose and utilise one’s vulnerability in research, acknowledge the value of vernacular knowledge, and promote collaborative and supportive relationships with all stakeholders.
Embracing this role in early consultations with all involved groups is key. Procedural ethics follow a formalized procedure and initiating unofficial dialogue with the REC before protocol submission fosters more open communication and allows each party to articulate their concerns. This is not easy in the context of time-constraints or apprehensions about piling complications as different groups assert their requirements. However, ethical conduct and methodological rigor interact symbiotically in community-academic partnerships. The overlap between some ethical principles of community-based participatory research (Banks & Brydon-Miller, 2018) and reconstructed quality criteria for participatory action research (Lindhult, 2019) is striking. Ethical principles of democratic participation, equality and inclusion, and making a positive difference to communities (Banks & Brydon-Miller, 2018) resonate with discursive, perspectivist, and practical validity (Lindhult, 2019). Whilst discursive validity has been defined earlier in this paper, perspectivist validity refers to ways in which participatory research promotes merging of plural perspectives and practical validity is an indication of a project’s transformative value. The case being made here is not that participatory research is intrinsically ethical, as Guba and Lincoln (1989, as cited in Boser, 2007) intimate in their claim that participatory action research is irreconcilable with deceitfulness. Meticulous ethical vigilance must be framed as a conduit to methodological rigor and, conversely, being invested in the dialogic process is a way of supporting ethicality. However, as suggested by Brydon-Miller and Greenwood (2006), merely relying on the synergy between ethicality and methodological rigor can make room for ethical negligence. Discernment of this reciprocity is rather being recommended as a reflective instrument to be applied when efforts to support ethicality overwhelm participatory researchers.
A reflexive journal helps researchers annotate and work through discouraging moments when they start fearing that they need to water down their protocol to fit institutional requirements. The way forward is additional consultations and unresolved fear will compromise embodiment of the supplicant role, which needs to be deployed during dialogue with all partners involved. Reflecting on one’s positionality as researcher and on any personal or professional ambitions coveted helps unpack this apprehension. Sufficient time needs to be factored in for these processes, particularly if the participatory researcher is a novice.
Published participatory and photovoice material keeps burgeoning. In this case, reviewing as many accounts as possible of published photovoice projects proved highly beneficial. Such an exercise reveals ethical mechanisms which have become prototypical, such as the three-staged consent process and the ethics sessions for co-researchers, as well as other ones conceived ad-hoc. Keeping an inventory of the latter is recommendable as, once the needs and aspirations of the specific community one is working with become clear, identifying flexible ways forward becomes easier. In this way, a photovoice protocol should aim to have tried and tested mechanisms as well as others designed in-house. The importance of this mix is aptly captured by this metaphor on photovoice ethics, “One size does not fit all, but all must wear a coat in Winter.” (Rosemberg & Evans-Agnew, 2020, p. 1). Obviously, participatory researchers are encouraged to publish accounts detailing how procedural ethics and ongoing ethical vigilance unfolded. The conspicuous need for more specific reports of the ethics and photographic training for photovoice co-researchers and photovoice exhibitions is underscored. Ideally, our lead is followed and co-researchers are increasingly involved in manuscript preparation.
Once a protocol has been approved and co-researchers are recruited, they need to be allowed to review and modify/endorse it. Since such protocols typically contain academic jargon, research teams need to ensure all the provisions of the protocol are understood, either by forwarding supplemental simplified versions or through meeting co-researchers. Moreover, in any further correspondence with the REC it is advisable to copy in the co-researchers. In doing so it is imperative to keep in mind that tone and meaning may easily be misinterpreted in electronic communications. Enderle and Mashreghi (2022) also caution participatory researchers to monitor power differentials within the co-researcher group itself. Consequently, ways of eliciting opinions of more reticent community partners need to be devised. One way this was navigated in our case was by supplementing collective communications with individual ones. A co-researcher’s empowerment pace must be respected at all times and some might require extra time to engage in collaborative dialogue (Evans-Agnew et al., 2022).
Finally, participatory research teams should be prepared for the need to keep consulting the REC throughout their endeavour. This necessity is often a function of the fluidity of power dynamics between all knowledge workers (Boser, 2007). Thus, resolution of minor difficulties, further amendments to the protocol, or new submissions altogether in cases of major addenda to project plans may be required. These recommendations are concisely presented in Box 1.
Box 1. Recommendations for Participatory Researchers
• Secure a sound grasp of participatory worldview assumptions and major tenets of participatory action research and any foundational theories of the chosen method. • Initiate unofficial dialogue with community representatives and the REC well ahead of protocol submission. • Develop a willingness to listen collaboratively and an appreciation that ethicality supports methodological rigour. • Factor in the time and energy required to reflect upon and process any personal overwhelm during negotiations, coordinate negotiations, and allow different stakeholders to consider and respond to each other’s ideas. • Maintain a reflexive journal wherein shifting positionalities among stakeholder groups and power differentials within the co-researcher group are annotated. • Review accounts of published participatory projects to maintain an inventory of ethical mechanisms used to circumvent difficulties. • Copy in co-researchers when corresponding with the REC. • Ensure any written or verbal information passed onto co-researchers does not contain academic jargon or is supplemented with a simplified version. • Provide co-researchers the possibility of reviewing and modifying the research protocol if they were not given the opportunity to participate in its drafting. • Keep consulting with the REC throughout the project and remain open to amending the protocol if necessary. • Publish reports from their projects which address procedural ethics and/or ongoing ethicality. • Involve co-researchers in disseminating research findings and publishing project reports.
Recommendations for Co-researchers by Co-researching Community Partners
Co-researching participatory studies is a different experience altogether when compared to any previous involvement in research one may have had. Potential co-researchers should expect researchers to provide clear information about the project and the level of participation it entails during the first interaction. This should be consolidated with written information which includes the approved research protocol. Moreover, co-researcher authority to suggest ideas and challenge decisions should be explicitly stated during this initial encounter. The tone of the conversation needs to implicitly reinforce this statement. Co-researchers who grasp the importance of being assertive from the get-go not only ensure the needs of the co-researcher group are met but also place themselves in a better position to advocate for their wider community. Co-researcher active involvement is a major component of participatory research and strongly influences successful outcomes for the broader community. One should not feel researchers are being inconvenienced by any requests for accommodations. Rather, co-researchers should understand they have an obligation to be honest at the outset about any problematic issues they anticipate. Sharing vulnerabilities will guide the research team in planning ahead.
If an explanation of the role and function of the REC is not provided by researchers, this should be requested. Often the REC is perceived as a hurdle to overcome in order to achieve whatever one feels is additionally required in the protocol. However, an appreciation that the REC is there to ensure the research respects anybody involved in its conduction goes a long way in fostering collaboration. This understanding also helps co-researchers develop a sense of research integrity, which is important as the endeavour requires them to collect and analyse data. Moreover, ethicality also respects recipients of research findings. Thus, the REC ought to be perceived as a pivotal ally rather than an antagonist.
Research protocols submitted to and approved by RECs are typically worded in academic jargon. This may hold true also for official consent forms and any other written communication passed on by the research team. Explanations in lay terminology are a must. Additionally, these ought to be provided in a timely manner, well ahead any meetings during which decisions must be taken. Often, the co-researcher group has not yet been officially summoned when co- researchers are asked to review the approved research protocol. This considerably compromises their ability to advance necessary modifications and individual review of the protocol is not congruent with the collaborative spirit of participatory research. It is being recommended, therefore, that sharing of ideas between co-researchers is instituted at the protocol review stage which precedes formal research meetings. In the case of this project this was instigated by the research team who encouraged co-researchers to consider sharing a portrait of themselves and any other personal information via a collective email thread. Following this ice-breaking exercise, co-researchers spontaneously decided to open a WhatsApp group chat to facilitate protocol evaluation by the group. This initiative helped the team work better when it came to decide on the research questions and social change priorities during the first formal meeting. Moreover, the group chat is ongoingly being used as a means of offering reciprocal support, sharing ideas for picture-taking, and maintaining team enthusiasm and cohesiveness.
Although co-researchers often have a similar lived experience, each team member may discern a nuanced reality. With respect to this study’s team, for instance, it transpired that ADHD presentation, number of years one had been diagnosed, age and personality influenced one’s input in conversations, the mindset brought into the discussion, and fluency patterns. Co-researchers with a combined (inattentive and hyperactive/impulsive) presentation were more likely to initiate and interrupt conversations whilst those with an inattentive presentation took longer to articulate their thoughts. These situations can give rise to power imbalances within the group which can reinforce feelings of powerlessness among the more reticent individuals. Ultimately, this harms the research as the resulting standpoint is not representative of the whole group. In the event that researchers fail to notice and mitigate these dynamics, co-researchers should discuss these issues with the research team as soon as possible.
Representing the wider community as a co-researching community partner concedes more power than that typically afforded in conventional research. However, with great power comes great responsibility. When reviewing the protocol, the broader interests of the community one is representing need to feature in evaluations. In particular, photovoice co-researchers should understand how the study may tokenise or misrepresent the community it intends to liberate. When in doubt, it is best to consult the wider community through whichever channels are acceptable within one’s community. If ways of disseminating research findings in a format which is accessible to the broader community are not planned, we recommend co-researchers to push for them. On the other hand, active involvement and responsibility can be overwhelming. At any time, co-researchers should feel comfortable setting some boundaries with the research itself as a form of self-care. In this project, this looked like switching off notifications from the group chat to avoid being distracted or asking for more succinct instructions from the research team.
The co-researching team appealed to researchers to allow them to co-author publications emanating from the research. Many held postgraduate degrees but had to struggle considerably in their academic journeys. Co-authoring in the context of ADHD-related difficulties has been perceived as a recognition of perseverance and resilience. Advocating for compensation or recognition of one’s work is important. Additionally, co-researchers are urged to suggest ways through which projects can showcase their skills. A co-researcher who works as a graphic designer will be fashioning exhibition invitations for this project whilst the venue for the expo will be adorned with artesian handcrafts created by another co-researcher.
Finally, co-researchers should be made aware that contact with the REC need not be terminated upon approval of protocol modifications. Ethical issues may keep surfacing and they can always suggest to researchers to rope in the REC for guidance and support. Box 2 succinctly presents co-researcher recommendations.
Box 2. Recommendations for Co-researchers
• Ask for a clear indication of the level of participation involved and clear written information in non-academic language at the outset. • Aspire to participate assertively to advocate for your wider community and assist the academic research team in meeting community needs. • Maintain the commitment to represent your wider community in a dignified way. When in doubt consult the wider community. • Suggest that the co-researcher group meets up informally before being summoned to official study meetings. • Ask the academic research team to explain the role and function of the REC. • Ask to review the approved research protocol and discuss any issues of concern within the protocol with the academic research team. • Suggest channels through which team cohesiveness and enthusiasm can be maintained throughout the project. • Discuss any problematic group dynamics observed within the co-researcher group with the academic research team. • Push for disseminating study findings in ways accessible to your wider community. • If necessary, set boundaries with study participation and negotiate participation with the academic research team. • Discuss ideas for highlighting personal or community talent within the study with the academic research team. • Advocate for compensation or recognition of your contribution to the study. • Consider suggesting the roping in of the REC at any stage of the study to the academic research team if the need arises.
Recommendations for RECs by REC Chair
As exemplified through the research project that has prompted the development of this paper, Community-Based Participatory Research (CBPR) is a method that attempts to address power imbalances in research by endeavouring to truly enhance active community involvement throughout the process. The unique ethical considerations brought about by this effort need to be addressed by RECs in order to maintain a balance between ethical robustness and community agency. In this view, several recommendations may be considered. Primarily, the distinct nature of CBPR needs to be acknowledged. This refers specifically to the need to distance oneself from the traditional tendency to view participants as subjects that are separate from the researchers (Wolf, 2010). In contrast, CBPR intentionally blurs these clear distinctions by ensuring that participants and researchers contribute fully and equally during the planning and implementation of the project. In line with this practice, RECs may be required to adapt their frameworks to ensure that recommendations do not pose a threat to the underlying philosophy of this research approach whilst also safeguarding ethical principles. Another important recommendation centres on the need to clarify the role of the community participants as both researchers and study subjects. As discussed in the PHAT study, in such research, there may be challenges in determining the extent to which community members who are collecting data also fall within the remit of ‘human subjects’ under federal regulations (Wolf, 2010). In this view, it is imperative that researchers and RECs liaise closely to delineate the various roles of participants during the different phases of the project. To facilitate this, researchers should focus on providing explicit and detailed documentation in their REC application. In response, RECs need to be flexible when applying set regulations, in order to acknowledge the dual roles of participants whilst ensuring that the research itself is in line with ethical standards (Wolf, 2010). This may pose challenges since the rigid frameworks that typically guide ethics review by RECs can impede the iterative research process that is adopted by participatory research methods (Wolf, 2010). One example is the requirement by RECs to have the research plan presented in a detailed and finalised manner in the application for ethics review. In CBPR, this may be difficult to achieve since the research plan evolves gradually in response to community needs.
Another recommendation refers to the promotion of open dialogue between RECs and CBPR researchers (Boser, 2007). Considering that, as acknowledged in this paper, researchers may already be apprehensive prior to and during the ethics review process, the relationship between RECs and the researchers may be strained. In this view, open and ongoing communication needs to be fostered to bridge the perceived gap between respecting ethical standards while accommodating the nature of CBPR. As illustrated in the PHAT study and in this paper, when RECs and researchers dedicate a visible effort to be flexible and respect the various viewpoints, a collaborative effort to address ethical concerns may have positive outcomes. Whilst time management is commonly a challenge for researchers with project deadlines and busy RECs, involving community representatives in REC discussions pertaining to CBPR may be one way of enhancing transparent dialogue. Another aspect that must be considered is the protection of both research participants and the community that is being researched. Traditionally, REC protocols are targeted to protect individual participants from harm through e.g. physical harm or unethical breaches. However, in CBPR, the potential for harm may extend to the community being researched as a whole e.g. by increasing the risk of stigmatisation (Flicker et al., 2007; Wolf, 2010). This points towards the need for RECs to consider both individual and collective risks by involving the broader social and political context of the community being researched, especially in view of how the project under evaluation may impact the reputation or social standing of the community. Liaison with the researchers and community representatives may facilitate decisions in relation to, for example, pseudonymising aspects of the data and presenting the findings.
In conclusion, the ethical issues that may arise in CBPR are complex and context-dependent. RECs may need to guide researchers to continuously engage in ethical reflexivity. This may involve holding regular ethics debriefings with community partners and engaging in ongoing personal reflection. By emphasizing the importance of this practice, researchers can feel more responsible and committed to upholding ethical standards within their project. Recommendations by the REC chair are illustrated specifically in Box 3.
Box 3. Recommendations for RECs
• Acknowledge the distinct nature of CBPR, in particular the equal involvement of researchers and participants in study planning and conduction. • Consider adapting frameworks to ensure recommendations are in line with ethical principles but do not compromise participatory philosophy. • Ask researchers to provide explicit documentation to facilitate the delineation of the various roles of participants at different phases of the project. • Apply set regulations flexibly to acknowledge the dual roles of participants whilst ensuring the research is in line with ethical standards. • Consider collective community risk apart from risk to individual participants. • Maintain open and ongoing communication with researchers. • Involve community representatives in REC discussions to enhance transparent dialogue. • Foster researcher engagement in ongoing ethical reflexivity through regular ethics debriefings with researchers and community partners.
Conclusion
The difficulties in navigating procedural ethics for participatory research have been extensively debated. However, bids for more publications detailing participatory researchers’ experiences with obtaining ethical clearance for their projects have still not yet been sufficiently heeded. In particular, reports of positive collaboration are needed to level off the impact of the minimal literature on this topic which, generally, portrays RECs in a negative light. Similarly, the dearth of published material from participatory studies offering co-researcher perspectives subsists notwithstanding several appeals.
This paper has attempted to address these gaps by reporting how the academic team, co-researching community partners, and the REC who oversaw procedural ethics for an ongoing community-academic partnership collaborated to finalise a protocol which responded to all concerns. Moreover, the distinct voices of all the parties involved have been incorporated in this conjointly written article. The commentary of project-specific challenges intentionally serves to contextualise recommendations put forward, thus highlighting how ethicality in participatory research concurrently rests on adherance to standards and a context-centric orientation.
The philosophical assumptions of the participatory worldview may be deployed to guide procedural ethics. Ethical clearance for participatory research is a process which requires profound dialogue and appreciation of multiple standpoints. Furthermore, it holds educational and transformational potential. Oversight of participatory projects sensitises REC members to the importance of considering the impact of any type of research on communities. On the other hand, academic and community partners have an opportunity to put participatory research practices into action before embarking on other crucial mileposts which, unlike protocol finalisation, may be irrevocable or time-bound in nature. For these heuristic outcomes to unfold one must assume a fluid conceptualisation of power, which views self-determination as the ability to engage effectively with other social players in fora where boundaries that delineate one’s sphere are continuously negotiated.
Footnotes
Acknowledgements
We would like to thank the executive committee of ADHD Malta, a non-governmental organization supporting individuals and families with ADHD in Malta, for their contribution during initial consultations and in facilitating recruitment of co-researching community partners. In addition, we are grateful to the Sexual Orientation, Gender Identity, Gender Expression and Sex Characteristics (SOGIGESC) Unit of the Human Rights Directorate of Malta for helping us ensure project title and inclusion/exclusion criteria are regardful of the LGBTIQ community.
ORCID iDs
Ethical Considerations
The study mentioned in this article was approved by the Faculty of Health Sciences Research Ethics Committee of The University of Malta (Approval Identification - FHS-2022-00249) on April 22, 2024.
Informed Consent
All participants provided written informed consent prior to enrolment as co-researchers, publication of this article, and disclosure of their co-researcher status through co-authorship of this paper.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Declaration of Conflicting Interest
The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Withal, it must be declared that the first author, one of the academic research partners involved in the project this paper talks about, and all co-researching community partners are members of ADHD Malta, a non-governmental organisation which advocates for the needs of the Maltese ADHD community. Moreover, the second author was the chairperson of the Research Ethics Committee who oversaw ethical approval of the study mentioned in this article.
Data Availability Statement
Data sharing not applicable to this article as datasets generated to date from this ongoing study have not yet been analysed and member-checked by co-researching community partners. Moreover, this article has a methodological focus and is not reporting any results.