Championing Ethical Engagement of Youth in Healthcare: A Reflective Commentary

Abstract

Engaging youth as advisors in health research and service delivery is a rapidly growing practice, yet there are no consistent frameworks or ethical guidelines available to ensure the protection of this vulnerable population from unintended harm. This commentary aims to bring awareness to 3 ethical complexities observed in the authors’ own participation within the field of youth engagement in health research and service delivery: (1) a lack of standardized safeguards for youth advisors, (2) a lack of accountability for the safety of youth advisors, and (3) the need to cater engagement activities to the development and well-being of youth. Further, recommendations for meaningfully engaging youth advisors are proposed with the aim of ensuring their safety and enabling opportunities to drive impactful outcomes in health care.

Introduction

Youth engagement involves collaboration between youth (aged 10-24) with lived experience in the healthcare system (henceforth referred to as “youth advisors”), ¹ and researchers or clinicians to ensure health research and services align with the needs of youth. This is a growing area of practice, with youth advisors contributing to the development, conduct, and dissemination of research,^2,3 and the design and evaluation of health services. ⁴ Driven by their lived experiences and motivations to make a positive impact on the healthcare system, youth advisors can be directly involved in data collection, data analysis, interpretation of findings, and knowledge translation activities in research processes, ⁵ and co-design, quality improvement efforts, experiential validation, and advocacy in clinical service delivery. ⁴ In fact, evidence suggests that engaging youth advisors in these activities produces outcomes that are more relevant, impactful, and grounded in patient-identified priorities. ⁵ Numerous researchers and institutions have devised best practices or guidelines for effective youth engagement in health research or service delivery.^2,5,6 However, these documents are often modified from adult patient engagement frameworks, and most do not adequately account for the unique developmental needs of youth.^6,7 Consequently, appropriate safeguards that protect youth from potential harm in engagement often fail to exist, leaving youth advisors particularly vulnerable. Ethical and safety concerns related to youth engagement, if not enacted appropriately, include the risk of (re)traumatization, negative impacts on youths’ mental health, feelings of isolation or tokenism, a hesitance to further engage, and a loss of trust in the individuals and systems designed to support youth.^3,5

A lack of safeguards for youth advisors in health research and service delivery is an ethical issue, not just a matter of best practice. As individuals with experience both engaging youth and being engaged as youth in health research and service delivery, the authors seek to bring attention to ethical issues that commonly arise in youth engagement and provide concrete recommendations to help address them.

Textbox 1: Reflective Case Study

What an Ethical Dilemma Can Look Like for Youth Engaging in Research: A Reflective Case Study

You are 19 years old and relatively new to the world of research. One day, you learn about an opportunity to join a mental health research project as a youth advisor for one year. The opportunity particularly excites you because you only need to bring your lived experience- no prior research knowledge is required. After eagerly applying for the position and participating in an interview with the study coordinator, you are selected.

A year later, the principal investigator (PI) of the study is completing an end-of-grant report for the project funder and has shared it with the youth advisors to review. Immediately, you notice that the PI has stated that the advisors were provided with various training opportunities, none of which were actually provided to you nor your peers. In fact, you were given no training or professional development opportunities at all. You know that not only is the PI aware of this, but so are the other research team members who have reviewed the report. Yet, nobody has bothered to correct the PI. As a young person who holds such little power in this situation, how do you address this? You worry about the negative consequences that may arise from speaking up about this, and you also do not know whose attention you can bring this to outside of the research team. You are left feeling powerless, unsafe, and like there is nobody looking out for you. You start to wonder if this is what all research is like and question whether you and your lived experience actually have a place in such a system.

This is a situation that one of the authors found themselves in, speaking to the very real harms that can occur to youth being engaged in health research if there are no accountability mechanisms in place for the research teams engaging them.

Perspectives

Ethical Complexity #1: Safeguards

Youth engaging as advisors in research studies are not provided the same safeguards as those involved as study participants, ⁸ or those receiving care as patients within healthcare systems. Research ethics boards (REBs) exist to provide oversight to all research studies, ensure participants are informed of their rights, and serve as a point of contact should concerns arise during a study. Additionally, feedback mechanisms exist for patients receiving care within hospitals if grievances surface, typically in the form of Patient Relations Offices. However, these protections do not exist at the institutional level for youth advisors involved in clinical engagements. With no ethical standards or consistent reporting structures for youth to express concerns should issues arise during research or clinical engagements, youth advisors may experience harm.

Further, it is at the discretion of researchers and clinicians to design and implement safe, meaningful strategies for engaging youth in research, given their lack of oversight within REB applications or organizational oversight committees. This means youth may be exposed to engagement environments that elicit negative experiences due to unsafe approaches. Assuming that youth advisors are afforded the same decision-making power and privileges as researchers and clinicians fails to acknowledge the inherent power imbalances that exist in youth–adult alliances, and the differing levels of vulnerability required for youth and researchers or clinicians in these partnerships.

Ethical Complexity #2: Accountability

Given the power dynamics that arise between youth advisors and researchers or clinicians, it is imperative that systems exist to protect youth by holding researchers and clinicians accountable. Currently, there are few accountability mechanisms in place when researchers or clinicians engage with youth, and most are overseen by the researchers or clinicians themselves. When joining an engagement initiative, youth are seldom provided with contact information for anyone outside of the research or clinical team they interact with, and, therefore, solely rely on the researchers or clinicians to manage conflicts. If youth were to express that they were harmed during the initiative, not only do they have to accept that the researcher/clinician uses their discretion whether to act on the complaint, but they must also raise this concern to the person causing this harm.

Another layer to this issue is that the youth has more to lose than the researcher or clinician. If a youth raises a complaint against a researcher/clinician, the researcher/clinician often has control over how many ears it reaches and can decide not to pursue it. If a researcher or clinician chooses to dismiss a youth's concern, the youth then faces the difficult task of deciding whether to remain in a harmful working environment or leave a project they are passionate about and have spent time on. Moreover, while the researcher or clinician has their academic credentials and reputation to support them, a youth with limited connections may lose access to opportunities, professional references, and other benefits, or may have their concerns dismissed by others if choosing to “rock the boat.” When external accountability mechanisms fail to exist, there is a high potential for youth to be harmed.

Ethical Complexity #3: Well-Being

Youths’ ability to engage exists within the context of their development. Adolescence is characterized by physical, cognitive, emotional, and social developmental milestones, moving youth closer to young adulthood; for example, beginning to think more abstractly, seeking autonomy, and developing empathy. ⁹ Youth at this stage are not “mini adults,” and thus require engagement approaches and corresponding safeguards that reflect their current developmental state. Activities should be intentionally planned to match the developmental capacity of youth advisors. For instance, youth benefit from clear descriptions of abstract concepts or terminology in reading materials, providing context needed to share meaningful and informed feedback. Engagement practices that ignore the developmental needs of youth risk being tokenistic and unsuccessful otherwise.

When engaging youth in activities that are tied to their lived experience, it must be noted that youth may not have the full repertoire of tools or internal resources to wholly support their own experiences. Failing to recognize this can result in an emotional burden that youth may not yet be able to regulate, as it may trigger the reprocessing or retraumatization of previous negative experiences. This is further complicated by a lack of standards for the oversight and consideration of youth advisors’ well-being in engagement, despite the acknowledgement that youth are seen as a vulnerable population. Clinicians and researchers, therefore, have a significant responsibility in establishing developmental and psychosocial safety, and assessing and addressing well-being in engagement.

Practical Recommendations

Based on the authors’ collective experiences, a series of recommendations are posed for addressing the aforementioned ethical complexities in youth engagement below and shown in Figure 1.

Figure 1.

Project-level recommendations for addressing ethical complexities in youth engagement.

Project-Level Recommendations

Involving youth in the early stages of research or clinical project planning is suggested to ensure initiatives are reflective of their priorities, to avoid tokenistic practices, and to increase youths’ sense of ownership over the success of the initiative. Further, youths’ safety and well-being should be a priority during (and following) all engagement encounters. Strategies for supporting youths’ safety can include involving a peer mentor or neutral third party who they can turn to for support, checking in about youths’ comfort levels, providing opportunities for offering feedback about the engagement process on an ongoing basis (ie, not waiting until the end of that engagement), and making time for rapport-building, check-ins, or debriefs either individually or collectively.^2,10

When engaging youth in a research or clinical initiative, it is important to be transparent about how their input is being used. Tracking or outlining changes in project-related documents that reflect youth feedback could be considered, helping youth understand their level of impact on decisions. Additionally, evaluating the process, experience, and impact of engagement from the youths’ perspectives is suggested. ⁵ Methods for obtaining feedback may include using anonymous surveys to gain honest input, holding reflective group discussions, or having individual conversations based on the youths’ preferences and the nature of the engagement. ⁵

Institutional-Level Recommendations

Given youth engagement initiatives often take place within healthcare institutions (eg, hospitals, research institutes, and community-based organizations), investing in accountability structures for youth at the institutional level is an important next step in this field. This could include the development and implementation of ethical guidelines, processes, or oversight committees within institutions to support research and clinical teams in ensuring safeguards and protections are available and incorporated into youth engagement plans. For research initiatives, REBs could consider building engagement process sections into their templates and hiring engagement specialists to review these sections of ethics applications. Similarly, medical oversight committees could request that teams outline their plans for enacting developmentally appropriate and trauma-informed approaches for engaging youth when proposing clinical youth engagement initiatives. Further, healthcare institutions should create dedicated youth engagement specialist positions that support youth advisors and staff by providing resources, training, and guidance in developing and implementing engagement plans, and serve as the “neutral third party” youth can connect to. ⁵ Given that funding and implementing positions within institutions may prove challenging, organizations can encourage existing staff to complete youth engagement training to expand their knowledge in this area or invite consultants with expertise in youth engagement (eg, researchers and advisors with lived experience) who are external to the engagement initiative, but within the organization, to offer support. These experts can additionally support inclusive engagement practices with marginalized or underserved youth experiencing intersectional, complex vulnerabilities.

To address the ethical issue outlined in the case study, funding agencies may have a role to play in promoting ethical youth engagement processes for research or clinical initiatives. Given that funders often require end-of-grant reports on funded projects, mechanisms could be established to allow youth advisors to provide anonymous feedback about their engagement experience, holding researchers and clinicians accountable and avoiding performative engagement practices. This form of feedback could be optional and included in addition to the reports submitted by project leads. Ultimately, providing multiple avenues for youth to have their voices heard provides a layer of safety and institutional accountability for this unique group.

Conclusion

Engaging youth in health research and service delivery transcends the direct impact of their participation. Providing space for youth to share their voices ensures that research and service delivery are grounded in their lived experiences, while broadening the range of perspectives that shape decisions, priorities, and outcomes. Most importantly, meaningful approaches to youth engagement are an investment in the adults of tomorrow, providing opportunities to build youths’ capacity, which increases the stakes of the, often, unintended consequences of tokenistic engagement. It is important to look towards fields such as education and community development that outline successful and collaborative models for youth participation. Only then can we avoid the ethical harms outlined in this commentary and realize the full potential of youth engagement as a catalyst for change.