COVID-19 impacted the physical health of millions across the country, hitting marginalized communities the hardest. Less visible was the pandemic’s impact on behavioral health, an umbrella term for mental health, substance use disorders, and life stressors. People that already experience higher behavioral health inequities, such as those in BIPOC and LGBTQ+ communities, were particularly affected. However, these same groups, due to stigma and longstanding power imbalances, are often excluded from designing behavioral health solutions. Without these voices at the table, attempts to address behavioral health could exacerbate inequities rather than improve them.
During the pandemic, people with behavioral health issues experienced a variety of stressors. For example, patients with COVID experienced short- and long-term mental health problems caused directly by the virus. Many people lost loved ones and went through significant grief. Furthermore, schedule changes and social isolation heightened uncertainty and anxiety. On top of all of this, in-person behavioral health treatment services were reduced, cutting off vital treatment options for those in need.
These factors, and more, have led to worsened behavioral health access. For example, among adults with mental illness, 48 percent of White Americans received mental health services, compared to 31 percent of Black Americans and Latinx/Hispanic Americans and 22 percent of AAPI populations. A survey conducted by the Kaiser Family Foundation found that three-quarters of LGBTQ+ people (74 percent) reported that worry and stress from the pandemic negatively impacted their mental health compared to half (49 percent) of non-LGBTQ+ people.
Given these outcomes, advocates in BIPOC and LGBTQ+ communities are calling for better behavioral health solutions. They are also pointing out the need for those solutions to address feedback from behavioral health patients themselves.
Centering Lived Experiences in Behavioral Health Solutions
Seeking input from marginalized individuals with behavioral health issues is important because there are many factors that contribute to those issues. For example:
- At the systems level, people in marginalized communities are more likely to experience harms like structural discrimination that impact mental wellbeing.
- At the institutional level, people in marginalized communities may experience challenges finding treatment centers or care professionals they can trust.
- At the individual level, childhood trauma and ongoing stigma can deepen the burden for individuals experiencing behavioral health challenges.
These diverse factors mean that there is no one-size-fits-all solution to behavioral health. To create an effective program or policy, it’s crucial to actually talk to those with behavioral health challenges and understand their specific perspectives. This information can help inform the design of those solutions.
Unfortunately, behavioral health solutions are typically developed by government officials, academic researchers, clinicians, nonprofit leaders, and social service organizations. These institutions are viewed as technical experts on behavioral health issues. However, leaders in these organizations often do not represent the populations they are trying to serve, particularly when it comes to BIPOC and LGBTQ+ individuals with behavioral health issues.
As a result, these solutions often fail to meet the needs of those they hope to reach, focusing on the wrong root cause or ignoring the ways that a specific group would like to be engaged. In some cases, they may even cause harm, by reinforcing the same dynamics of discrimination that contribute toward behavioral health stress in the first place.
Some healthcare institutions are employing peer recovery specialists. These are people with a history of mental illness or substance use disorder. These specialists deliver direct services and counseling to behavioral health patients, and are able to build deeper connections given their shared experience.
These frontline workers are rarely included in broader program design and strategy conversations. There are at least two reasons for this. One, the stigma associated with behavioral health in our society impacts perceptions of the capability of BIPOC and LGBTQ+ behavioral health patients. Program planners may assume that these individuals are unable to engage in planning discussions due to the demands of their illness and their lives. This paternalistic view assumes that leaving community members out of a process eases the burden for those patients. However, it ignores opportunities for program planners to proactively lessen that burden and create design spaces that are comfortable and accommodating. This includes compensating community members for their time, utilizing participatory decision-making structures, and providing essentials like childcare and food.
Two, individuals with behavioral health issues are also often labeled as “hard to reach” or combative. This biased perspective frequently shows up in our dominant work culture that devalues personal stories, pushback, or opinions that generate productive tension. Rather than viewing such tension as a necessary component of building equitable solutions, behavioral health planners may prioritize theoretical understandings of the population they’re working with. Engaging in the hard work of building relationships with behavioral health patients, and truly hearing out their insights, is not the norm.
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Promising Models for Human-Centered Design
A few models are addressing this gap. They are working to reframe patients as experts on their own lives rather than simply recipients of a service.
Recently, the Black Mamas Matter Alliance, a national network of Black women-led birth and reproductive justice organizations, published Black Maternal Health Research Reimagined, a report that lays out a framework for acknowledging past “violence, trauma and experimentation inflicted on Black bodies, families and communities within the fields of science, public health, and medicine.” One key principle highlighted in the report is the need for clear and consistent community engagement throughout an intervention design and evaluation process.
B’More for Healthy Babies is a Baltimore-based public-private partnership focused on decreasing the city’s infant mortality rate via a multi-system approach that considers social, behavioral, and economic factors such as postpartum depression, mental health, and grief counseling for pregnancy loss, infant loss, and stillbirths. The program’s governance structure includes a community advisory board of mothers who provide ongoing feedback on the group’s model.
In addition to governance structures like community advisory boards, a 2021 research study interviewed 10 Black women mental-health practitioners, activists, and researchers who support Black birthing people. The study identified five key pathways to center lived experience in Black women’s mental health interventions:
- Investing in the Black women’s mental-health workforce
- Investing in Black, women-led, community-based organizations
- Valuing, honoring, and investing in the community and traditional healing practices
- Promoting integrated care and shared decision making
- Educating and training practitioners on these pathways
B’More for Healthy Babies is incorporating practices like these into ongoing program design.
Another model that centers the expertise of individuals with behavioral health issues emerged in response to the opioid epidemic. The public sector strategy firm, 17a, is working to rebuild public trust in government by applying transparent, user-centered processes to public challenges. by convening diverse stakeholders across regions, including Southwest Ohio and Northwest Kentucky. With these partners, 17a engages patients to understand the multiple stages of long-term recovery and the factors that impact them.
Contrary to the perception that those struggling with opioid use disorder may be hard to contact or reluctant to share their experiences, participants in 17a’s process shared that patients are frequently generous with their time and perspectives. Recognizing that service to others facilitates recovery, individuals often want to be involved and give back to the recovery process.
Conversations with patients can reprioritize known but often overlooked aspects of opioid recovery. One of the most challenging times in a patient’s recovery journey typically occurs during the 30- to 90-day period after leaving an inpatient treatment program. Moving from the program’s structured environment back into the world places immediate and significant demands on patients: finding housing and making rent; securing a job; and accessing childcare, food, and many other needs. Such responsibilities can be stressful in any context but are particularly so while trying to maintain sobriety. Without models that account for wraparound services, a priority emphasized by patients themselves, care transitions out of treatment programs will fail to result in continual long-term sobriety.
Behavioral health solutions often also utilize technology, providing another opportunity for input from those with behavioral health issues. A recent study conducted with the University of Colorado and One Colorado, the state’s leading LGBTQ+ advocacy group, looked at participatory design in developing an app to support transgender youth. The Transgender Health Information Resource is a mobile app that provides credible health information that transgender youth may be seeking out. These youth will often seek out information on social media, mental health message boards, and platforms like Tumblr, but the quality of that information is variable.
To create the app, the developers engaged eight transgender youths, parents of transgender adolescents, clinical providers, advocates, and researchers. The group took part in an initial exploration of needs, brainstorming, and eventually prototyping an initial version of the app. After the pandemic stopped in-person meetings, app developers used collaborative web-based tools like Zoom to ensure ongoing collaboration and input from participating youth.
One insight that arose from the group was the need for a customized app interface that spoke to young people. Participants were able to give specific recommendations on features, language tone, and more.
Incorporating lived experience into behavioral health strategy and program planning addresses power imbalances related to stigma and credentialing that have long existed in marginalized communities. And while these processes should be comprehensive rather than tokenistic, they can be simple. Adopting creative engagement methods and valuing patients as people—not statistics or problems—can yield more effective ways to address the many layers of behavioral health.