Listening to those who know: The Need for forming advisory boards with lived experiences in global mental health research

Global mental health research increasingly prioritizes cultural relevance and equity, yet the integration of lived experience remains limited, particularly in mental health research where social and cultural contexts shape distress and help-seeking. This commentary draws on longitudinal engagement with Youth Advisory Boards (YABs) and Community Advisory Boards (CABs) in Nepal, informed by roles spanning advisory membership to doctoral research. It highlights how advisory boards contribute across the research lifecycle, including shaping research questions, refining instruments, strengthening ethical practices, and supporting interpretation of findings. Notably, their involvement as co-analytic partners in qualitative research enhances contextual validity and interpretive depth through experiential knowledge. The paper also examines key challenges, such as navigating power imbalances, ensuring emotional safety, and addressing logistical and resource constraints. It argues that meaningful engagement requires sustained collaboration, transparency, and careful attention to relational dynamics, rather than tokenistic inclusion. Overall, the commentary positions advisory boards as essential to producing rigorous, ethical, and contextually grounded research, supporting a shift from extractive models toward participatory and co-produced approaches that enhance both scientific quality and real-world relevance in global mental health.

Plain language summary

Mental health research aims to improve people’s well-being, but it does not always fully include the voices of those with direct experience of mental health difficulties. This is especially important in countries like Nepal, where experiences of distress are shaped by family relationships, social expectations, culture, and stigma. When these realities are not included, research may miss what people are actually going through. This paper is based on my personal journey working with Youth Advisory Boards (YABs) and Community Advisory Boards (CABs) in mental health research. Over time, I have been involved in different roles: first as a young advisory member, then as a research coordinator and study manager, and now as a doctoral researcher. These boards included young people and community members with lived experience of mental health challenges and suicidality. My experiences show that advisory boards can play an important role at every stage of research. They help shape research questions, improve study tools, guide ethical decisions, and ensure that sensitive topics like suicide are discussed in safe and culturally appropriate ways. They also help researchers better understand what participants really mean. For example, in my study, advisory members explained that a common Nepali word for “difficulty” actually reflects many combined pressures, such as family expectations and financial stress, rather than a single problem. The paper also shows that advisory boards are most valuable when they are treated as partners, not just consulted occasionally. When they are meaningfully involved throughout the research process, they help produce knowledge that is more accurate, culturally relevant, and ethically sound. At the same time, working with advisory boards can be challenging. It requires time, resources, careful planning, and attention to power differences and emotional safety. Overall, this paper argues that listening to people with lived experience is not only the right thing to do, but also improves the quality of research. Advisory boards can help make mental health research more inclusive, grounded in real life, and useful for communities.

Introduction

Global mental health research aims to reduce mental suffering, improve access to care, and promote well-being across diverse sociocultural contexts [1]. Yet, despite its emphasis on equity and contextual relevance, much of the field continues to rely on expert-driven frameworks that insufficiently incorporate the perspectives of those most affected [2]. This limitation is particularly consequential in research on sensitive topics such as mental health and suicidality, where experiences of distress and help-seeking are deeply embedded within social, cultural, and relational contexts [3].

Advisory boards in health research are structured groups of individuals, including people with lived experience, caregivers, and/or community representatives, who provide input across multiple stages of the research process, including design, implementation, analysis, and dissemination. Their functions include enhancing cultural relevance, strengthening ethical oversight, improving recruitment strategies, and contributing to interpretation of findings [4, 5].

In collectivist societies such as Nepal, mental health experiences are shaped by family dynamics, social expectations, structural inequities, and stigma [6]. Research approaches that overlook these contextual realities risk producing findings that are methodologically sound yet socially disconnected. Increasingly, Youth Advisory Boards (YABs) and Community Advisory Boards (CABs) are recognized as mechanisms to bridge this gap and enhance participatory approaches in research [7, 8].

At the same time, global mental health knowledge production remains marked by power imbalances, where perspectives from high-income settings often dominate research agendas and methodologies [9]. This can lead to epistemic inequities, where experiential and local knowledge are undervalued. Advisory boards offer a pathway toward more inclusive and contextually grounded research practices.

This commentary is shaped by my positionality as a Nepali researcher trained in psychology, who has engaged with advisory boards across multiple roles: as a youth participant, research coordinator, study manager, and doctoral researcher. While my experiences have been largely positive, they are situated within specific relational and institutional contexts and may not be universally replicable. Drawing on these experiences, I argue that meaningful engagement with advisory boards can transform research from extractive (i.e., collecting data without meaningful community involvement or benefit-sharing) to participatory and co-productive [10].

Being listened to: an early encounter with advisory boards

My first experience with an advisory board occurred unexpectedly during my undergraduate training, when I was invited to join a youth advisory group for a mental health study conducted in Nepal during 2014. At the time, I was uncertain why I had been invited. I was neither a researcher nor a clinician; I was a young aspiring psychologist navigating my own academic and social transitions. My understanding of the invitation was that I knew the one who was conducting the research. This lack of clarity could have been a source of discomfort, particularly given the sensitivity of the topic.

Initially, I felt apprehensive about whether my contributions would be relevant or valued or “listened to”. However, the facilitation approach adopted by the research team played a critical role in shaping my experience. The session encouraged dialogue, critique, and reflection, and fostered interaction among participants with diverse perspectives. Facilitators shared it continuously about the importance of our perspectives that added value in opening up and sharing my personal experiences.

The session began with the research team sharing the project’s theory of change. Around the table were other 10–11 young people who were similar in age but with different life experiences, interests, and perspectives. As discussions unfolded, I realized that the invitation was not symbolic. We were asked to respond, critique, and reflect and were given time to share our voices. I spoke from my positionality as a young Nepali navigating academic pressure, family expectations, and emerging professional identity.

At the end of the session, the facilitator summarized the discussion and highlighted key inputs that would shape the project. One of those points articulated in language I recognized as my own had emerged directly from my contribution. That moment marked the first time I experienced what it meant to be listened to within a research process. While I was not formally compensated (except lunch and travel support provided to reach the venue), the experience provided a sense of intellectual inclusion and legitimacy.

This early encounter demonstrated that lived experience can meaningfully influence research direction. More importantly, it demonstrated that experiential knowledge could legitimately influence research direction. For an early-career researcher, this experience was formative: it revealed that lived experience is not peripheral to research, but it is fundamentally valuable.

Listening as method: advisory boards in applied research

Years later, as I transitioned into a formal research role, I encountered advisory boards from a different vantage point. While coordinating a project focused on integrating youth suicidality screening and intervention within emergency department settings, I was involved in forming and working closely with a Community Advisory Board (CAB) composed of individuals with lived experience of suicidality and family members of those affected. This initiative, conceptualized by the project’s principal investigator, embedded advisory involvement from the outset.

The impact of the CAB was tangible. Advisory members contributed to the development of study tools, advised on recruitment approaches, and critically engaged with the interpretation of findings. Their insights shaped how questions were framed, which outcomes were prioritized, and how intervention components were sequenced. Importantly, their involvement was not limited to consultation; they were engaged throughout the research process. They were so involved that even our regular well-being session we used to designe were suggested by them.

However, challenges emerged! Coordinating participation, managing expectations, and ensuring emotional safety in discussions around suicidality required careful facilitation. Members were coming from various background, understanding and perspectives so organizing the perspectives and differences in alignment was challenge. Safeguarding measures including well-being check-ins, flexibility in participation, understanding, maintaining confidentiality, letting everyone give their input without any power hierarchy were necessary to ensure ethical engagement.

This experience reinforced another critical lesson: advisory boards are not an “add-on” to research design but a methodological asset. The presence of individuals who understood the emotional, relational, and practical realities of suicidality ensured that the research remained grounded in real-world complexity rather than abstract clinical constructs.

Co-analytic partners in action: advisory boards in qualitative research

The most analytically consequential use of advisory boards in this study emerged within my doctoral research on youth suicidality and social connectedness in Nepal. A Youth Advisory Board (YAB), composed of young people with lived experience, was established at the outset and engaged across recruitment, participant engagement, interpretation, and dissemination. However, their most significant contribution was within the qualitative analytic process itself, where they functioned not as consultative actors but as co-analytic partners.

To facilitate this, I conducted a series of structured discussion sessions during study process, and especially on data analysis in which selected interview excerpts were shared with advisory members by de-identifying the information of the participants. These sessions were conducted in Nepali, audio-recorded with consent, and documented through detailed analytic memos. Insights generated in these discussions were iteratively incorporated into coding and theme development, thereby embedding advisory perspectives directly within the analytic process and strengthening interpretive rigor.

A particularly illustrative example arose from an interview excerpt in which a participant stated: “malai gharho bhayera marna man lagchha” (literally, “I feel difficulty, so I want to die”). In isolation, the term gharho (difficulty) appears vague and analytically indeterminate. However, when discussed within the YAB, advisory members consistently interpreted gharho not as a singular or discrete problem but as an accumulation of pressures, including familial expectations, economic strain, social obligations, and emotional burdens. This interpretation emerged collectively across members and resonated strongly with broader patterns in the dataset, where distress was often expressed in diffuse and relational terms.

This moment was analytically generative. It enabled a shift from a potentially individualized reading of distress to a more relational and contextually grounded understanding, rooted in local meaning systems. Crucially, this layered interpretation is unlikely to have been derived with confidence without the experiential and cultural insight of advisory members. In this way, the YAB did not merely validate findings but actively shaped the interpretive lens through which the data were understood.

This case demonstrates the methodological value of involving advisory boards as co-producers or co-analytics of meaning in qualitative research. Particularly in cross-cultural contexts, where linguistic nuance and lived experience are central to interpretation, such involvement enhances analytic depth and reduces the risk of misrepresentation. Embedding advisory perspectives within the analytic process thus serves as a form of methodological rigor, strengthening the credibility and contextual validity of qualitative findings.

Support in action: advisory boards in quantitative research

In addition to their contributions to qualitative research, advisory boards also play a critical role in strengthening quantitative research within global mental health. In cross-cultural contexts such as Nepal, advisory members can contribute to the development, adaptation, and validation of quantitative measurement tools. Their involvement can help to ensure that survey items are culturally meaningful and aligned with local expressions. Advisory boards can identify ambiguous, irrelevant, or potentially harmful questions and suggest contextually appropriate modifications, thereby improving the cultural validity of instruments considering their understanding of the context and subject from their experiences.

Advisory boards as research-tool in helping to understand culture, and ethical sensitivity

Research on sensitive topics like suicidality presents heightened ethical challenges, particularly in contexts where discussing suicide is taboo. In Nepal, cultural norms around family honor, social reputation, and silence around mental distress can complicate recruitment, consent, and participant safety.

Both YABs and CABs played a critical role in navigating these challenges. Advisory members helped identify culturally sensitive language, advised on how to introduce topics without triggering distress, and suggested mechanisms for participant support that aligned with local norms. They also anticipated ethical dilemmas that were not immediately apparent to the research team, such as the implications of privacy in tightly knit communities [11].

For example, advisory members highlighted concerns regarding confidentiality in tightly knit communities and contributed to designing contextually appropriate participant support mechanisms. Such engagement strengthens ethical rigor and aligns with broader calls for culturally responsive mental health research [9].

And this reinforced another understanding that YAB or CAB can be a ‘research tool’ in themselves to maintain ethical sensitivity.

From tokenism to partnership: the epistemic value of advisory boards

A persistent risk in participatory research is tokenism, where advisory involvement is symbolic rather than substantive. My experiences underscore that the value of advisory boards lies not in their existence but in how they are engaged. Meaningful involvement requires transparency, capacity-building, attention to power dynamics, and sustained commitment.

When engaged as partners, advisory boards shift the epistemic orientation of research. They challenge whose knowledge counts, whose voices are amplified, and whose experiences shape conclusions. This participatory ethos aligns with broader calls within global mental health to decolonize knowledge production by respecting local voices and avoiding “taking information without giving back.” [12].

This kind of advisory engagement with those who have experience also fosters co-learning and co-designing. Researchers gain contextual insight and ethical sensitivity, while advisory members develop research literacy and advocacy skills. This reciprocity strengthens trust and enhances the likelihood that research findings will translate into socially relevant interventions and policy.

This was also evident during one of my engagements as a study manager working with a Community Advisory Board where advisory board members became key agents of advocacy in translating research findings for the broader benefit of the community [13].

Challenges and limitations of advisory board engagement

Despite their benefits, advisory boards present several challenges. Tokenistic engagement remains a risk, particularly when advisory input does not meaningfully influence decision-making [7]. Power imbalances between researchers and advisory members may persist.

Practical constraints, including time, funding, and logistical demands, can limit meaningful engagement. Compensation practices are often inconsistent, raising ethical concerns. Additionally, lack of clarity regarding roles and expectations can create confusion or discomfort among advisory members.

In some contexts, advisory boards may not be feasible for example, in highly stigmatized settings or where confidentiality cannot be ensured. These limitations highlight the need for careful planning and contextual adaptation of engaging advisory boards.

Implications for global mental health research

The lessons from Nepal have broader relevance for global mental health research. Across settings, particularly in studies addressing suicidality, mental health, and marginalized experiences, advisory boards offer clear benefits:

• They promote cultural and contextual grounding of research questions and tools,

• They strengthen ethical safeguards and participant support,

• They enhance data quality and interpretive accuracy,

• They build trust between researchers and communities,

• They democratize knowledge production and empower lived experience voices.

Global mental health initiatives must therefore move beyond minimal consultation toward fully integrating advisory boards across the research lifecycle from conceptualization to dissemination.

Practical considerations for establishing advisory boards

Establishing advisory boards, be it youth advisory board or community advisory board, in global mental health research requires more than procedural setup; it demands careful attention to purpose, ethics, and relational dynamics. A first practical consideration is clarity of purpose and role definition. Advisory boards should be established with explicit articulation of their role across the research lifecycle, including involvement in study design, refinement of tools, ethical guidance, interpretation of findings, and dissemination. Without clear expectations, there is a risk that advisory involvement becomes symbolic rather than substantively integrated into decision-making processes.

A second key consideration is composition and recruitment of members with relevant lived experience and contextual knowledge. In mental health research, particularly in settings such as Nepal where distress is shaped by social, familial, and structural factors, inclusion of individuals with diverse lived experiences is essential. Selection should aim to reflect variation in age, gender, socioeconomic background, and exposure to mental health challenges, including suicidality, while ensuring that participants are able and willing to engage in reflective and sustained dialogue.

Ethical preparedness and emotional safety mechanisms are also critical, especially when addressing sensitive topics such as suicide. Advisory board discussions may evoke emotional distress among members with lived experience. Therefore, researchers must incorporate safeguarding strategies such as well-being check-ins, flexible participation options, confidentiality assurances, and supportive facilitation practices. These mechanisms are essential to ensuring that participation does not inadvertently cause harm.

Another important consideration is power sharing and meaningful engagement practices. Advisory boards function most effectively when they are positioned as partners rather than passive consultants. This requires facilitators to actively address hierarchical dynamics between researchers and advisory members, encourage open dialogue, and ensure that all voices are valued equally. Sustained engagement across the research process is crucial to avoid tokenism and to enable genuine co-production of knowledge.

Communication, facilitation, and accessibility also play a central role in effective advisory board functioning. Regular meetings with structured yet flexible agendas, clear communication of research updates, and use of local language where appropriate help ensure inclusive participation. In contexts where participants may have varying levels of familiarity with research processes, accessible facilitation is essential for meaningful contribution.

Finally, resource allocation and sustainability considerations must be addressed. Effective advisory engagement requires time, funding, and logistical planning, including compensation for participants where possible. Inconsistent or absent compensation can undermine equity and limit sustained participation. Additionally, advisory structures should be periodically reviewed to assess effectiveness, relevance, and member well-being, with opportunities for adaptation or renewal based on evolving research needs.

Overall, establishing advisory boards in global mental health research is not a one-time procedural step but an ongoing relational and ethical commitment. When thoughtfully designed and sustained, they contribute to more culturally grounded, ethically robust, and methodologically rigorous research.

Conclusion

Youth and Community Advisory Boards are not peripheral to mental health research; they are central to its integrity, relevance, and impact. Across my experiences, as a young advisory member, a research coordinator, a study manager, and a doctoral researcher, one lesson remains consistent: “listening to those who know does the magic in research”.

By centering lived experience, advisory boards illuminate the social, cultural, and emotional realities that conventional methodologies often overlook. They transform research from an abstract academic exercise into a collaborative process of meaning-making. For global mental health research to be truly transformative, it must treat advisory boards not as contributors but as co-creators of knowledge.

Listening, when done genuinely, is not merely ethical; it is scientific!

Author contributions

Kripa Sigdel is responsible for conceptualizing and drafting this manuscript. The insights and perspective is the expansion of the experiences and collaborations she had over the years in her research career.

Funding

Not applicable.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Human ethics and consent to participate

Not applicable.

Competing interests

The authors declare no competing interests.