Engaging Community to Identify Patient-Centered Lethal Means Safety Outcomes for Youth

Suicide is the second leading cause of death among United States youth.1 Firearms are the most lethal means of suicide,2 and access increases the risk of suicide death.3 Lethal means safety (LMS) planning involves decreasing access to firearms and other highly lethal means of suicide, and is one of the few evidence-based suicide prevention strategies.4Emergency departments (EDs) are increasingly screening youth for suicide risk. The approach to managing risk is not standardized—among those who screen positive with no active suicidality, care is heterogeneous, and firearm discussions are rare.5 Existing LMS planning interventions are geared largely toward caregivers; youth are typically omitted from LMS planning discussions,6 thus failing to recognize their decision-making capacity and emotional maturity.7 Moreover, outcomes measuring “success” of an LMS planning tool typically assess provider-centered goals and may not address family priorities.Engaging teens in developing a planning tool and in LMS planning discussions aligns with tenets of patient-centered care.7 Patient-centered care involves establishing a partnership with patients and creating management plans tailored to their values and beliefs, and has the benefit of improved patient outcomes and adherence to care plans.7 Teen engagement in LMS planning is also respectful of their developing social-emotional maturity and understanding of risky behavior, and supports them in building a decision-making skillset that is essential to adulthood.7To address this, we are developing TEen ENgaged LEthal meaNs Emergency Department (TEEN LENS ED), a teen-engaged LMS planning tool for youth with elevated suicide risk. Teens are central to several phases of intervention development—their input will inform development of the LMS planning tool, which will be web-based, self-guided, quick, and easily delivered by a health care professional without specific mental health expertise (eg, nurse or ED provider). A community advisory board (CAB) was developed to provide oversight for TEEN LENS ED development. Here, we describe the development of the CAB, including partnership development, identification of patient-centered outcomes, challenges, and how lived experience partners enhanced LMS planning for youth at-risk of suicide.Maya (research team) selected initial partner types using the 7P framework,8 which identifies key groups to consider for engagement. Potential partners (ED providers, mental health experts, and individuals with lived experience) were solicited via academic listservs, community organizations, support groups, and online networks. Snowball sampling methods, where existing partners recruit other potential partners, were also used.The initial CAB included 8 individuals: 2 research team members (Maya and Bethany), 4 ED physicians, including 1 trainee (Rachel, Jessica, Alexandra, Siobahn), an adult whose child died by suicide (Kari), and a young adult advocate (Nina). In this phase, there was insufficient infrastructure to ensure the safety and protection of teen participants in the CAB. They have been and will be included in all other phases of intervention development (ie, semistructured interviews, prototype development, and pilot study).Partners reflected on their reasons for engaging with the CAB.Kari (survivor): “I am a suicide loss survivor and advocate daily for the prevention of suicide. Means control is one of the most promising areas of suicide prevention research, and this tool will save lives.”Nina Birdsey (young adult advocate): “I was 11 when my best friend had an unsuccessful attempt and 17 when a fellow classmate of mine died by suicide. I view this topic with the perspective of an advocate and someone who has historically suffered with their own mental health. It’s essential for health care to involve and be willing to listen and learn from patients, parents, peers, and young adults.”Alexandra (Pediatric Emergency Medicine [PEM] fellow): “I see immense actionable change that we can make in suicide prevention. Nothing is more impactful on how we connect with patients in crisis than learning from individuals and families who have been impacted by suicide.”The first CAB meeting was held in person at the hospital campus. Some participants had conflicts barring them from attending additional meetings in person; subsequent meetings included in-person and virtual attendance options. All meetings lasted 2 hours, and CAB members, clinical and community partners, were paid $40 per meeting.Meetings leveraged “Liberating Structures” facilitation techniques and methods. The goal of the purpose-to-practice (P2P) facilitation technique is to generate a shared vision and the means of achieving it by delineating purpose, principles, participants, structure, and practices.9 To ensure all voices were heard, Maya (research team, PEM) facilitated using the 1-2-4-All facilitation method. This involves brainstorming responses to structured prompts (Table 1) independently for one minute, in pairs for 2 minutes, then presenting to the group.9 We did not speak in groups of 4 (ie, a stage of the facilitation method), given the smaller CAB size. We then used the “Now what?” component of “What? So what? Now what?” to identify concrete actions our group will take moving forward.9For the third meeting, we started by reviewing “nonnegotiable” outcomes, such as acceptability of the tool, feasibility of implementation, knowledge recall, and proportion of eligible patients completing the intervention. We then explored patient-centered LMS planning outcomes using the nominal group technique (NGT).9 As the first step, everyone was given 10 minutes to brainstorm outcomes independently. To ensure equal participation, individuals shared one idea at a time, followed by a team discussion to clarify and group similar outcomes. Each participant then voted for a limited number of items, and items with the most votes were selected as priority patient-centered outcomes.Maya (Research team, PEM): “It was crucial for me that advocates and individuals with lived experience felt empowered to participate in a meaningful way. Structured facilitation techniques ensured that all voices and ideas were heard.”Emily (Psychologist): “I found the NGT to be particularly effective in identifying and prioritizing outcomes for LMS planning. This experience contributed to breaking down silos among research, clinical care, and patient experience.”Insights from the P2P exercise established the purpose and importance of the CAB and the proposed intervention (Figure 1). Salient themes identified in the purpose segment included taking advantage of the opportunity to impact change and support youth and communities. Guiding principles included the need to create a safe space, be open-minded, and make good use of time.The CAB recognized the need to include participants with lived experience, high-risk youth (eg, youth with diverse sexual and gender identities), firearm owners, and providers from general EDs. Although we could not include everyone in the CAB, we recognized the need to consider them in decision-making. CAB members assisted in further recruitment, and we contacted the campus lesbian, gay, bisexual, transgender, and queer plus (LGBTQ+) coalition and the University Firearm Injury Prevention Initiative for potential participant recruitment. Additional CAB members included a social worker (Morgen), a pediatric psychologist (Emily), and the hospital Chief Quality Officer (Lalit), who explained, “Losing many people I have loved dearly to suicide, and seeing the teen epidemic firsthand as an ED provider… I felt it was vital that I use my place in the organization to advocate for the resources and implementation of programs to address adolescent suicide.” An individual from the LGBTQ+ coalition, a high school teacher, and a Firearm Injury Prevention Initiative member agreed to join the CAB but did not attend meetings.The final CAB included 12 individuals. Although the membership was heavily weighted toward clinicians, several clinician participants described lived experience with suicidal thoughts impacting them or someone close to them. We continue to develop relationships with community organizations and partners to engage a wider variety of perspectives on the CAB. (Table 2)In the structure portion, partners discussed how the CAB can be most productive—Kari (survivor) proposed the need for clear milestones, action items, timelines, and meeting agendas to use time most effectively. The practices portion of the exercise identified specific priorities. ED providers suggested process mapping for the implementation of TEEN LENS ED, whereas Nina (young adult advocate), Kari, and clinical partners hoped to clarify the role of the CAB in developing TEEN LENS ED.We identified several priority outcomes for youth and caregivers with lived experience (Supplemental Table 1). Kari (survivor) suggested outcomes, including whether the family has applied the tools used and how the discussion influenced communication in the home. Nina (young adult advocate) suggested evaluating the perceived normalization of the experience and the teen’s feeling of empowerment. Clinical partners with lived experience proposed measuring a parent’s perceived ability to keep their teen safe.Key outcomes for caregivers included successful use of the LMS plan (80%), whether they applied LMS since the intervention (50% of CAB members), improved communication in the home (50%), feeling they can keep their child safe (50%), competency communicating and applying LMS principles (40%), reduced feelings of stress/worry about child’s safety (40%), and understanding barriers to safe storage (40%). For youth outcomes, key findings included improved access to professional help (80%), feeling safer (60%), an attitude change toward normalizing their experiences (50%), referring to the LMS plan (50%), increased knowledge about firearms and suicide (40%), and improved communication in the home (80%). Future work will evaluate whether teens feel these outcomes are relevant and important.CAB members suggested that we evaluate “Knowledge, Attitudes, and Behavior” among providers.10 Institutional goals, such as decreased ED visits and length of stay for youth with suicidal behaviors, were discussed. It was not clear whether the frequency of ED visits would reflect intervention effectiveness—decreased visits could indicate stability at home and reduced need for crisis evaluation; conversely, increased visits could reflect improved communication about suicidality and increased help-seeking behavior.Several challenges emerged during the CAB activities. First, as we received last-minute cancellations for our second meeting, we set up a virtual option in real time. We subsequently decided to make all meetings hybrid to facilitate attendance, which required preparation to ensure proper technical support and equal engagement for in-person and virtual members.Second, several groups of individuals were found to be inadequately represented at our first meeting. We identified additional partners to participate in subsequent meetings (eg, Chief Quality Officer), but struggled to engage additional community partners. This has the potential to worsen power imbalance and shift the results away from patient-centeredness, despite efforts to the contrary. Notably, 9 of 12 team members reported experience with suicidal thoughts impacting them or someone close to them (Table 2), including a provider who “lost many close friends to suicide” and “also had SI myself,” and another who “lost a teenage cousin to suicide.” Additionally, 5/12 CAB members reported having a household firearm.Several potential barriers to engagement will need to be addressed to enrich this work. Stigma surrounding mental health may prevent people from discussing their own experiences. People may have been less inclined to join if they did not have a personal relationship with other CAB members. Additionally, the initial plan to conduct meetings in person preempted participation of individuals with barriers to transportation, time, or living in remote areas of the state. To address these barriers, we have developed relationships with several community groups across the state, through virtual meetings and site visits, creating relationships, and prior to inviting them to the CAB. Additionally, CAB members emailed coworkers and suggested friends or neighbors to expand the representation of community members/lived experience experts on the CAB. These efforts are meant to decrease stigma and build trust prior to partnership on the CAB. We have also modified our meeting format to be hybrid, facilitating participation from diverse geographic settings and transportation abilities. To better engage teens, we will regularly participate in hospital teen advisory board meetings to elicit input and feedback, and will engage them in future CAB meetings with a safety plan in place. We will make efforts to partner with young adults by developing trusting relationships with on- and off-campus groups, and encouraging these partners to participate in pairs to ensure feelings of safety. Further efforts are still needed to engage marginalized participants as described by Rachel (PEM and suicide loss survivor): “I hope the group expands to include greater diversity (of age, gender, race, geographic region, and political views), ensuring that the voices of the broader Colorado community—especially youth—are represented, heard, and actively driving change in this field.” Although youth are typically omitted from this work, their perspectives are paramount—we will develop protocols that amplify their voice and allow for their safe participation in the CAB.Partner engagement increases the relevance of research products to their intended community and, in doing so, may help bridge the research-to-practice gap.11 Partners with lived experience improve the quality of research and patient care. 11 In our case, they enhanced the CAB by enhancing the relevance of the work, grounding discussions in what matters to youth at elevated risk and their families so that outcomes are meaningful, and encouraging approaches that reduce stigma and unintended harm. Several studies demonstrate that partner engagement enhances retention, enrollment, and dissemination of research findings.12 Nina (young adult advocate) highlights the trust built with the community through this process, noting, “Delivering care that is trauma-informed and personalized was another guiding focus. The experience was transformative; I was involved in a safe and respectful space and met with consideration and curiosity from clinicians and researchers alike. This is vital to our work because people who aren’t at the table are suffering and will continue to suffer the most.”There are unique difficulties in defining what constitutes a meaningful outcome for LMS planning. As suicide is a relatively rare event and the intervention is delivered to a minority of the population, efficacy cannot be measured by regional suicide rates. Several studies assessing LMS planning appropriately use firearm and medication storage measures as their outcome.6,13–15 Others explore suicidal behaviors, with a systematic review finding no difference in effectiveness as a standalone treatment.16 These outcomes are essential to selecting an intervention that addresses outcomes important to providers and researchers. By excluding patients from identifying outcomes, however, we may be missing outcomes that reflect patient or caregiver priorities. Partners with lived experience, for example, suggested outcomes examining communication in the home, normalization of the experience, and an increased sense of security. These patient-centered outcomes ensure that future LMS planning work considers patient needs and makes interventions more relevant to the population they aim to serve. Future work by clinical and community partners should evaluate whether these outcomes are broadly relevant.Several elements of the work facilitated meaningful engagement. Community partners described the vulnerable involvement of others as being meaningful. Nina (young adult advocate) noted, “What I found particularly refreshing was the transparency and vulnerability of every participant.” Kari (survivor) said, “The professionalism and thought that the team has demonstrated show me just how much they care about the patients they serve.” Setting ground rules and establishing our structure as a team were essential to creating this trusting environment.Power dynamics can be challenging in academic-community partnerships, particularly when youth or young adults are involved. Strategies to promote equal participation of members are critical. In our case, structured facilitation techniques were essential to meaningful, equitable engagement, regardless of participant role.Equally important was identifying participants who were committed to the work and passionate about suicide prevention. Maya (research team) interviewed all potential participants, delineating time commitments and ascertaining motivations for participation. Community members and providers alike described personal experience as a motivation. Rachel (PEM and lived experience) explained, “Preventing youth suicide is not just a professional mission—it is deeply personal. As a teenager, I lost a classmate to firearm suicide. That shaped my path as a pediatrician, mother, and advocate. No family or community should endure such a devastating loss.”Finally, individuals’ continued participation in the CAB was driven by their experience and motivation to advance the field. Nina noted, “It was an honor to learn, listen, and participate in an environment driven by purpose.” Capturing the experience of many, Rachel explained, “Despite differences in professional background, culture, and personal beliefs, the CAB united around a shared mission. I deeply valued each unique perspective and was invigorated by our shared commitment of making suicide a never event.”