Advancing Evidence-Based Interventions to Improve Access to Mental Health Services for LGBTQ+ Youth
TAMARA LEWIS-JOHNSON: Welcome to the 2021 National Institute of Mental Health LGBTQ Mental Health Webinar entitled Advancing Evidence-Based Interventions to Improve Access to Mental Health Services for LGBTQ+ Youth.
My name is Tamara Lewis Johnson and I am the point of contact for non-HIV Sexual Gender Minority Research at the Office for Disparities Research and Workforce Diversity at the National Institute of Mental Health. I am responsible for providing advice and guidance on matters related to sexual and gender minority mental health research.
The National Institute of Mental Health recognizes that more mental health research involving sexual gender minority populations is essential to gain a better understanding of the complex factors impacting the well-being and mental health needs of sexual and gender minority individuals and to reduce the mental health disparities experienced by many in that community.
This afternoon we are spotlighting the research of Drs. Emily Feinberg, Sarabeth Broder-Fingert, Tania Israel, and Miya Barnett. This research was funded by the National Institute of Mental Health’s Division of Services and Implementation Research.
Significant mental health disparities exist for LGBQT+ youth as a result of frequent discrimination and a lack of support from family members and society. To improve mental health outcomes, it is important to understand how LGBTQ+ youth of color and their families negotiate intersecting identities, manage stigma, and discrimination and develop or utilize social support systems.
And now, a little bit about the speakers. I will introduce them as they will be presenting this afternoon. The first is Dr. Tania Israel. She is a Professor in the Department of Counseling, Clinical, and School Psychology at the University of California, Santa Barbara.
Her scholarship focuses on interventions to support the mental health and well-being of lesbian, gay, bisexual, transgender, and queer individuals and communities. Her research focuses on privilege and oppression, intersections among gender, ethnicity, and sexual orientation, and social justice. She has received honors for her research and advocacy from the American Psychological Association, the California Asian and Pacific Islander Legislative Caucus, and her local LGBTQ community.
Next is Dr. Emily Feinberg. She is the Associate Professor at Boston University School of Medicine. She received her doctorate from Harvard School of Public Health and her MSN in Parent-Child Nursing from Simmons College and her bachelors from Boston University. She is trained clinically as a pediatric nurse practitioner and continues to see patients at Dothouse Health, a federally qualified community health center in Boston’s Dorchester neighborhood.
The focus of her research is improving systems of care for vulnerable children with complex conditions. She has a background in maternal and child health with specific training in the conduct of community-based experimental studies.
Then I am introducing Dr. Sarabeth Broder-Fingert. She is the Associate Professor of Pediatrics at the University of Massachusetts Medical School. She is a nationally recognized expert in implementation autism research and a passionate and successful mentor of junior investigators.
As a researcher and clinician, for the past 12 years, she has been working to develop and test novel interventions to improve the lives of vulnerable children. At the same time, she has been studying how and why certain innovations are widely disseminated and implemented, while others are not. Dr. Broder-Fingert has a successful track record of developing, testing, implementing, and disseminating novel interventions to improve care for young adults.
And then last but not least is Dr. Miya Barnett. She is the Assistant Professor at the University of California, Santa Barbara in the Department of Counseling, Clinical, and School Psychology. She runs the Promoting Access through Dissemination and Implementation Research on Evidence-based Services Lab and Parent-Child Interaction Therapy Clinic.
Her research is focused on how implementation science can address mental health service disparities for ethnic minority children and families. She is specifically focused on how lay health workers can be mobilized to increase access to evidence-based practices for underserved communities.
The investigators will have approximately one hour to present their findings. And then we will take questions from the viewers. You may submit a question at any time during this presentation by sending it to the Q&A box at the bottom of the screen. I will share your questions with speakers and give them an opportunity to respond. The Q&A will follow the full presentation.
And now just a few more housekeeping notes. Participants, as you are here, you are muted and in silent-only mode and your cameras are turned off. As I said earlier, please submit your questions via the Q&A box at any time during the presentation. If you have any technical difficulties, hearing or viewing the webinar, please note these in the Q&A box and our technicians will work to fix the problem. You can also send an email to firstname.lastname@example.org. This webinar and all other webinars in this series will be recorded and posted on the website for later viewing in approximately one month.
Please allow me to introduce Dr. Tania Israel.
TANIA ISRAEL: Hello. I want to say first of all a huge thank you to NIMH for inviting us to present on this important topic. We will be sharing some overview of the issue in terms of mental health disparities and community health workers and then we will share some findings from a current project that we are working on.
Sexual minority, which we mean lesbian, gay, bisexual, queer, questioning or otherwise non-heterosexual youth face notable challenges, including higher rates of mental health concerns than their heterosexual peers.
In the Trevor Project’s 2021 survey of nearly 35,000 sexual and gender minority youth, ages 13 to 24, 72 percent of LGBTQ youth reported symptoms of generalized anxiety disorder in the past two weeks. Sixty-two percent of LGBTQ youth reported symptoms of major depressive disorder in the past two weeks. And the 9 percent of cisgender or non-transgender youth and 18 percent of transgender youth had been subjected to conversion therapy and those who had been subjected to conversion therapy had twice the rate of suicide attempts compared to those who had not. Forty-two percent of LGBTQ youth seriously considered attempting suicide in the past year, including more than half of transgender and gender non-binary youth.
When we look at actual suicide attempts, 12 percent of white and Asian American LGBTQ youth attempted suicide compared with higher rates of youth of color. Only one in three LGBTQ youth found their home to be LGBTQ affirming. As we know, people have been home a lot in the past year and a half. That has been particularly stressful during COVID. And nearly half of LGBTQ youth reported that they wanted counseling from a mental health professional, but that they were unable to receive it in the past year. As you can see, there are considerable risks for LGBTQ youth in terms of mental health.
Let us talk a little about parental support. Parents of sexual minority youth may lack information about sexual orientation. They might also know few sexual minority individuals and they might hold prejudices towards sexual minorities. Consequently, they may be demonstrating some unsupportive behaviors. As you know, parents are very influential in children’s lives and especially with people at home so much. It is important that we understand what are some of the things that might be going on.
In terms of parental behavior, some of those unsupportive behaviors are verbally rejecting a child’s sexual orientation. Sexual orientation change efforts, also known as conversion therapy. Also, parents suggesting that a child’s identity is pathological or is just a phase. Parents may discourage a child from coming out and they may avoid discussions related to sexual orientation. These are behaviors that have been identified by youth as particularly unsupportive.
When parents do these unsupportive behaviors, it is associated with the youth depression, suicidality, low self-esteem, and substance use, including alcohol, tobacco, and other substances.
There are things that parents can do to express support. Parents of all children can express support generally by conveying love and warmth, by doing enjoyable activities with their child, and by fostering a relationship where communication is more likely to happen. Those are things where all parents of any youth, sexual and gender minority or not.
But in addition, parental supports specific to sexual and gender minority youth can include certain things, including talking openly about sexual orientation, gender identity, gender expression, and identity exploration.
Also, helpful is acknowledging the presence of heterosexism. Connecting one’s child with LGBTQ media and community so they are not isolated. Validating a child’s romantic relationships. Welcoming a child’s LGBTQ friends into one’s home. Encouraging acceptance among family members and advocating for inclusive school and religious environments. And educating themselves and processing their experience as a child of a sexual minority child but doing away from the child so that they can have all of their reactions and emotions without the child needing to support that or be exposed to potentially negative messages.
It turns out that parental support is then a protective factor and high levels of parental support are associated with decreased depression, anxiety, substance use so the same things that we saw as elevated when there is lack of support or unsupportive behaviors. But also, parental support can be protective against risky sexual behavior, psychological distress, and also suicidality.
One finding from the Trevor Project study that stands out in terms of the impact of parental support for gender minority youth in particular is that transgender and gender non-binary youth, who reported having their pronounces respected by all of the people they lived with, attempted suicide at only half the rate of those who did not have their pronouns respected by anyone with whom they lived. That is one very concrete way that parents can demonstrate support of gender minority youth is using their pronouns.
We also know that adjusting to being a parent of a sexual or gender minority child is a process that parents may not initially demonstrate those supportive behaviors because they might need to educate themselves. They might need to gain knowledge. They might need to process what it is like to have a sexual or gender minority child and they might also need to navigate their concerns around a child’s safety or happiness. For some parents, they may experience a sense of loss for what they believe to be their child’s sexual orientation or gender. Parents typically do become more supportive of their child’s sexual orientation or gender identity over time. But sexual and gender minority youth may benefit from getting that support at an earlier point.
In sum about parental support, parents can be sources of stigma or support. Parental support is an important factor in sexual and gender minority youth mental health. And parents may be struggling especially early in their own adjustment process.
What about the role of culture? Experiences of sexual and gender minority youth and parents may differ based on cultural considerations. Notably, whereas children from other kinds of minority groups like racial or religious minority groups generally receive parental affirmation of their minority status and support based on shared group experiences so parents of color who are raising children of color probably have some shared experiences around racism that they can help their child to learn to deal with.
But sexual and gender minority youth are typically the offspring of cisgender heterosexual parents who may be uncertain about how to support a sexual or gender minority child.
We know that there are differences in some mental health risks by ethnicity. I mentioned before suicidality. This is from the Trevor Project study. Suicide attempts by ethnicity. White and Asian American youth attempt suicide 12 percent of sexual and gender minority youth. But you can see that that is higher for Latinx youth, black youth, multiracial youth, and especially Native American youth up to 31 percent. There are those kinds of differences that we see.
Why is this? In addition to discrimination based on sexual orientation and gender identity, LGBTQ youth of color experience discrimination based on race or ethnicity. And the more types of discrimination youth experience, the higher their risk for suicidality.
We also see some very specific things going on in terms of parental rejection. Parental rejection is higher among Latinx and black parents compared to white parents. It is mediated by homonegativity so the more homonegativity, the more negative toward LGBT people the parents are, the more likely they are to reject their child.
Parental rejection is associated with cultural values that emphasize traditional gender roles. Parents of sexual and gender minority youth may be struggling especially when cultural values conflict.
Support may also look different for different parents based on culture. For example, expressions of sexual orientation may be culturally influenced. In some cultures, there may be more overt naming of sexual orientation and in others, there may be what we might called tacit subjectivity, which is when there might be a demonstration of sexual orientation or gender identity through behaviors or bringing a partner home, but not actually naming it verbally and that that is more common and more acceptable in some cultures than others.
There are also some opportunities for parents. Parental experience can help to prepare children for discrimination and how to deal with discrimination and how to identify discrimination. That can be protective if parents have experienced some types of discrimination, for example, racial and they can help their child to understand how to deal with discrimination based on sexual orientation or gender identity or expression.
You can also build on cultural values, for example, around family and the importance of family support and acceptance. And, again, support may look different in various cultural contexts. It is very important that we find ways of supporting people that are consistent with or coherent in their cultural context.
What about intervention? What do we actually want to do to help support sexual and gender minority youth and their parents? Because youth are impacted by their environments, it is important intervene at that level rather than just focus on individual interventions directed at youth. There are organizations like PFLAG that involve peer support among parents of sexual and gender minority youth. However, PFLAG groups predominantly serve white parents in urban areas so they may not adequately be reaching racial minority and rural populations.
There are other things that maybe helpful with that. There is the parent support program developed by Dr. Em Matsuno and there is also the PRISMS intervention by Dr. Josh Goodman. These are online so they increase access. They do not necessarily reach all parents and also because they are online interventions, they are a little bit more challenging to individualize. We need interventions that are community based, that are tailored for specific and historically marginalized communities.
We also need culturally relevant interventions. We need a model for how to develop interventions that work within one community and that can help us to think about how to do this in other communities too. We may not be able to go broadly initially. We may want to target some specific communities and then figure out how that does or does not generalize to other communities.
I am now going to pass off the presentation to Dr. Feinberg.
EMILY FEINBERG: Thank you, Dr. Israel, for a great introduction. I think you have really highlighted the opportunities that the models that we will be discussing can have to support LGBTQ youth and their families.
I will be changing course a bit and providing background on models to address service disparities, specifically looking at family navigation and promotoras. Both promotoras and navigators all within the sphere of community health worker models of care collectively the individuals who provide these services are often called lay health workers in that there is no single educational pathway that defines the role.
But community health worker models of care share a common foundation. The individuals who deliver the service whether a person is called a community health worker, navigator, family partner, or promotora share common social attributes to the population served.
Some examples are that they live in similar communities. They share racial, ethnic, linguistic background. And they may have similar lived experience, for example, a child with a disability or a history of substance use disorder.
In all cases, they leverage their social proximity to the communities served to bridge services. And those services may be linkage to mental health services or more broader social needs.
I am going to speak specifically about family navigation, which is the model that I have most experience with. The goal of family navigation is to support families in overcoming structural and psychological obstacles. It might be transportation, language, fear, or stigma in order to reduce disparities in access to care and engagement in recommended services.
Family navigation is rooted in the chronic care model and shares the basic tenets of patient navigation from which it was derived. You may be familiar with patient navigation. It was originally targeted to individual patients with cancer risk. It focused on a period from suspicious screening result through diagnostic ascertainment and engagement in recommended services. But sometimes it is called the discovery to diagnosis disconnect. Its use has expanded to other conditions and currently addresses a range of areas to care.
Similar to the original navigation model, family navigation focuses on the period beginning with an identified concern that requires follow up and expands the model to engage the entire family unit rather than a patient. Navigators provide time-limited family support and education, community outreach and linkage to services.
Our work originally focused on support to families of children identified as having an increased likelihood of autism and has expanded more broadly to children and youth with behavioral concerns who live in communities affected by structural racism.
We have been conducting a study using most or multi-phased optimization strategy framework to learn how we can optimize support – optimize family navigation to support engagement in behavioral health service.
The findings that we will be presenting today has expanded our work further to exploring how we can adapt family navigation and the work of promotoras to support LGBTQ youth and their families.
When we talk about family navigators and promotoras, in some ways, they are quite similar but there are some differences. In terms of the family navigation, it relies on community health workers who are referred to as navigators, who are trained in some behavior change and patient engagement of family engagement strategies, including motivational interviewing, collaborative problem solving, and psychoeducation in order to accomplish family goals and navigate barriers to care and also to provide cross-sector care coordination.
They are generally paid employees who are part of health systems and embedded in primary care or specialty clinics. And they also are provided as part of their position with clinical supervision and case review.
Promotoras are specifically members of the Latinx community. They are Spanish speaking and usually serve on a volunteer basis. They are really truly community members and support linkage to a wide range of health and social services.
In terms of navigator role and training, I would like to spend some time talking about that because there is no formal educational pathway for community health workers. Training is often not well documented and can be quite variable.
The next slide includes video clips from the navigators of our current behavioral health project and highlights some of the key aspects of their role and training. I thought this information might be helpful as you consider the role of community health workers in your work.
I would like to introduce our navigators, Maria Ortiz and Deanne True. They are also, as I mentioned, refer to family partners and in the study that is taking place at a federally qualified health center called Dorchester House in the Boston area. They will be talking about their role and particular the role they play in cross-sector care coordination.
EMILY FEINBERG: Family engagement is perhaps one of the most important components of the navigator role. In this next clip, Deanne talks about learning MI and how that has affected her practice as a navigator and her approach to family engagement.
Motivational interviewing is part of the larger training curriculum. It was adapted from one used to train integrated behavioral health clinicians and relies on a common factors approach. Her comments really highlight the way that evidence-based practices can be utilized by community health workers when working with families.
EMILY FEINBERG: Another component of navigator training is understanding systems of care. Working in a primary care setting is often a new experience for navigators even individuals who had extensive community experience. It is also a new experience for behavioral health and primary care clinicians to work closely with a community health worker as an equal team member. It requires dedicated attention to promote respectful and trusting relationships.
In this clip, Deanne is comparing her role as a navigator in primary care to that of care coordinators or community-based community health workers and comments on the values that she sees of being embedded in a primary care team.
EMILY FEINBERG: The final part of navigator role in training that I wanted to highlight is the role the navigator plays in helping a family to understand a child’s behavioral health, diagnosis, or concern and their plan of care. They have the ability to discuss a behavioral health condition from a shared cultural perspective that often clinicians do not have.
But in order for them to feel comfortable to have these conversations, it is important to provide opportunities for community health workers to learn the skills they need to engage comfortably in these discussions with families.
In our projects, we have utilized an online training platform as well as in-person training, developed by a larger pediatric behavioral health initiative, TEAM UP for Children. This is an initiative that is taking place at this health center site as well as seven other health centers in the Boston area.
It provides foundational training in behavioral health conditions such as anxiety, depression, ADHD, as well as more general issues that a navigator or promotora might confront when they might experience when they are discussing with families such as parental stress and trauma.
This foundational learning is supplemented by role-focused learning specifically designated for community health workers. It also includes specific training around crisis management, suicidality and safety.
I hope that this has given you enough idea of what the navigation role looks like in practice, how training might occur and really set a stage for thinking about how this role might be adapted for the LGBTQ children and youth and their families.
I am going to turn it over to Dr. Broder-Fingert who will introduce the next section of the webinar.
SARABETH BRODER-FINGERT: Thank you, Emily. That was a wonderful background. I am going to talk now a little bit about the research project that we undertook and some of the findings along with Dr. Barnett.
I think what we have discussed so far is we have really given an overview of some of the mental health needs of LGBTQ youth and particularly that there are significant needs greater than many other populations. And Dr. Israel gave a nice overview of that. And Dr. Feinberg gave us a nice overview of two specific models of community health work or lay health workers that we are looking at in this particular study although we certainly know there are many other models.
But what we want to highlight and what we thought about in this project is the fact that CHWs or community health workers really hold a lot of promise to improve access to mental health services. But at the same time, we know that traditionally CHWs have focused on overcoming disparities or inequities among racial and ethnic minority groups.
But as Dr. Israel highlighted in the beginning of the talk, LGBTQ youth particularly those from intersectional identities have additional needs that have not yet been addressed within the CHW workforce. These youth and their families often have both unique cultural strengths and also challenges related to their intersectional identity and our CHWs, a potential workforce that can help overcome some of these challenges and improve access to mental health services.
We, as in the implementation science team, really wanted to take an implementation science lens and thinking about how can CHWs be adapted to address the mental health needs of LGBTQ youth and we really wanted to think about from this implementation science lens the fact that we know adaptation happens and is critical to the success of interventions, but how can we be thoughtful and deliberate about adapting this intervention for the specific population?
This is a paper that I am just going to tease right now because it is not out yet, but it is coming out soon. And a lot of what we are going to discuss today is in this paper as well. If you want to hear more on our thoughts about adapting this workforce, keep an eye out for this paper that will be coming out soon.
As I mentioned, what we wanted to do in this project is take advantage of these two CHW workforces, one that is out of Boston, Massachusetts and that is a family navigator workforce and then a second out of Santa Barbara, California that is a promotora workforce to understand what the needs are for CHWs to better serve the LGBTQ community and then also what the LGBTQ community tells us about what their needs are. We really wanted to look at the needs of both parents and youth, the training needs for CHWs, and then how can we use that information to preemptively adapt the innovation to allow for better services for this community.
As I mentioned, what I think are the strengths of our study is that we actually took the view of two different populations in two different parts of the country. For the professional participants or the lay health worker participants, we interviewed four navigators, four family navigators in Boston and seven promotoras in Santa Barbara. And Boston and Santa Barbara are different in a number of ways. First of all, geographically, they are different. Boston is – the site that we were working from is much more urban. Santa Barbara, although there are urban areas, they are also a large area that is rural as well.
And then in Boston, the family navigators or family partners are directly employed by the health center. In Santa Barbara, the promotoras are actually a volunteer workforce of specifically Latina women. While they are both considered community health workers, there are actually some important differences that we thought we could use to better explore the needs of the navigators and promotoras in their training, but also in the needs of the community that they serve.
And then the last thing that I want to mention is both Boston and Santa Barbara are both relatively affluent communities. We want to take that into consideration as we are thinking about the meanings of these findings.
I just talked about the study subject participants who were the lay health workers. But we also interviewed youth and parents. I know someone asked in the comments, what age group did we consider youth. We were considering these are emerging adults so older youth.
We wanted to show their identities in this way because this is going to be a consistent theme as we discuss the findings, which is that we really want to allow people to use their own voice to identify themselves. We did not want to categorize them for you, and we did not want to display this as a bar chart or a graph to categorize people into individual identities. We wanted to allow our participants to identify themselves.
This becomes really important as we think about the findings because as someone who works in this space, one of the most common questions I get is what should the identity be of the community health worker that we want to hire when I meet with health systems who are interested in this kind of work.
I think the challenge particularly with thinking about this study is that a lot of people have intersectional identities. And if you were trying to serve an LGBTQ and Latinx community, should your family navigator or community health worker identify from one or both of those communities and why does it matter. That is a little bit of what we are going to get into as we move forward.
Now, I am going to pass this over to Dr. Miya Barnett, who is going to talk a little bit more about our research methods.
MIYA BARNETT: Thank you so much, Dr. Broder-Fingert. We conducted semi-structured interviews with the three participant groups. I do want to reflect on the point of our youth being over the age of 18. We thought it was important to be able to hear the perspectives of youth who were able to consent for themselves to participate in the research. Many people were reflecting back on their experiences of being younger and having less autonomy than they currently do. But we conducted semi-structured interviews with the youth, with the community health workers, and with the caregivers who were all in this study biological parents. And we made our semi-structure interview guides specific to each group, but also covering similar areas around what resources were needed, what cultural considerations there were with the coming out process and what their personal experience in their own role was and then what training needs an individual who was helping families of LGBTQ youth would have. We really sought to reflect a range of gender and sexual orientation in the caregivers of the youth and the youth themselves.
We used a Rapid Qualitative Analysis approach that has been used extensively and more recently within implementation science that Dr. Allison Hamilton has really pioneered and put forth as a way to address how implementation science often is happening quickly to address in the moment needs of a community. And I think that all of us on this call can agree that the mental health needs of all members of the world right now are quite extensive, but specifically looking at the statistics from the Trevor Project that Dr. Israel presented that we have urgent needs within the LGBTQ population, the youth population especially for our youth of color. We wanted to do a rapid technique where you use interview templates and summarize interviews and then are able to put those summaries within a coding matrix to see if there are differences across stakeholder groups. We thought this was especially valuable having three different stakeholder groups in two different settings to see where the similarities in differences and themes were. I am going to go over those results now.
Across all participants, community health workers, parents, and youth in Boston and Santa Barbara County, the role of stigma and discrimination that we have heard about from Dr. Israel really came through. And what was spoken about quite extensively was the role that culture and how the cultural groups of the participants could exacerbate the feelings of stigma and discrimination. Not unexpected, but a common theme was not just about culture, but really the role that religion within the culture can have that makes that really can intensify feelings of stigma and discrimination felt by the youth themselves and then enacted through their parents, but also for the parents.
A quote from one of our youths is there is so much machismo in the community that does not allow me to be my full self. This goes back to the idea that gender normative societies could have higher rates of stigma and discrimination.
A parent talked about how they themselves really want to support their youth. Their concern was within what their youth was going to experience. It was like what is going to happen to them now. Are they going to be okay? Are they going to be safe? Stress for the parents about what their youth are going to face, what their children are going to face.
And a community health worker said there is a lot of misinformation, the culture, the beliefs, even feeling negatively about the families. Again, pointing to the fact that often these parents are feeling stigma and discrimination and that they are blaming themselves for having a sexual or gender minority youth.
Again, it was actually very consistent across groups and across sites that more culturally and linguistically appropriate resources were needed both for youth and for parents. And the way that these resources were described really range from light touch, easy to disseminate materials like pamphlets that could be available within a doctor’s office that explained things like what are these terms, what is sexual orientation, what is a gender identity. That was a point of confusion that many youths describe having concerns that they wish that their parents could know without them having to educate. That the pamphlets needed to be provided in a range of language for our population. For our study population, it was predominantly Spanish that was spoken about.
That there was a need for support groups, which as Dr. Israel mentioned, there is a history of peer support for families of LGTBQ youth with PFLAG, but often not within the cultural groups that the families themselves are coming from our sample. And that there needs to be more mental health services. Just a complete lack of mental health services was something that was recognized, but very specifically that the youth and the parents and the community health workers were talking about the need that these mental health services be affirming for LGTBQ youth and responsive to their specific needs. I will get into that a little bit more with – findings.
It was clear that from the community health workers and the parents specifically that there was feelings of confusion and a lack of awareness of different terms related to gender and sexual orientation and that this confusion could cause some feelings of shame and really drive avoidance – talking about sexual orientation and gender identity with youth.
Similarly, youth identified a desire for their parents to know more about their identities and use correct language to feel more supported. We heard from Dr. Israel how using correct pronouns that can be something that buffers against suicidal risk. I am going to get into why this might be especially relevant for us to think about when we are adapting for different linguistic groups.
A parent said and I so found myself wishing that they were just gay instead of non-binary. Is that their gender? At first, I thought they were gender fluids. That is what I thought. And now they are saying their gender is non-binary. I am trying to understand the differences. Even amongst a population of caregivers and parents that were willing to do interviews with us, which probably biases the sample. It is really people who potentially feel more open to supporting their youth. There was just this confusion and not understanding what their youth were even talking about with their gender identity, which made it harder for them to support.
And then a non-binary youth said, it is still hard for her, speaking about her mom, to integrate that and she was speaking about the pronoun elle in her daily language. When she talks to me, she still uses the masculine form, the masculine pronoun.
This is really interesting and important and specific to the Spanish language. And I can’t speak to other languages, but I think it really points to something we all would need to be mindful about with interventions and how to help community health workers and then also help parents is how languages treat gender. This was a youth that had transitioned and first identified as trans masculine and then identified as non-binary. And the mom had made the transition to using male pronounces, but the pronoun elle is a gender-neutral term in Spanish instead of saying elle or elle. It is a new word in Spanish. Spanish is very gender in the way that you conjugate adjectives and all sorts of things. This was a further stretch for this mom to understand it.
When you think about how using correct pronouns might impact a youth’s mental health within the home and how this might be additionally challenging for Spanish-speaking families or families from other languages that are more gendered languages. I think it is really important for us to think about how to support families even with those most basic logistical shifts.
It was very striking in our interviews and also speaking with our advisory group, which works with youth in medical settings that there are specific challenges for trans youth. And that parents and youth specifically recognize these additional challenges related to discrimination and a lack of understanding and challenges navigating systems and the resources needed. I just spoke about language. Another quote that shows how this came up with multiple participants – youth saying when I speak in Spanish, I do not know how to gender myself so even for the youth themselves, struggling with the language component.
There was more discrimination faced and described for trans youth coming from family members, again, family members towards the youth and also family members towards the parents of the youth. The schools discriminating against these youth like which bathroom their children were able to use and also even from medical providers and mental health providers. The spaces that were meant to be safe and the systems that are meant to be safe really not being safe spaces for trans youth. More systems to navigate and more places in which parents need to advocate. And also, that there are more resources needed by trans youth – but also legal services to do name changes and hormones and surgery and so just quite a bit of additional stress and burden that caregivers and youth were described – of trans youth were describing.
How might this translate for community health workers? We asked all participants what would a role of a navigator or a community health worker be? And really our participants were identifying strong fits behind these navigation bridge services and what is needed. Navigating health and mental health services specifically like I said for trans youth, recognizing that there is multiple different types of mental health and health needs. The community health workers who share identities with parents who are coming from the same cultural group as the parents and speaking the same language could really be a source of social support when parents are feeling isolated and stigmatized and education, that they could be helping parents understand questions and doing some of that processing that Dr. Israel was talking about that can be necessary but is not helpful when the parents are burdening the youth with that.
That the community health workers’ understanding of the different needs of the families and what comes up in the culture really can help make the care that is being received more culturally responsive. And the model of community health workers, promotoras, and navigators, which focuses so much on advocacy across systems, is especially well fit for LGBTQ populations.
At the same time, community health workers, which included the navigators and the promotoras, so it did not really seem to matter whether you were invited within primary care or more embedded within the community expressed a strong desire to support LGBTQ youth and their parents. They really said I see this as part of my role. I can see how important this is and we see how there is additional needs. But they mostly had not had experience of doing this and did not have training on how to work with LGBTQ youth or parents.
We had a range of what experiences people had. We had one community health worker who very openly said I used to feel a lot of prejudice towards LGBTQ individuals. I was very uncomfortable with it. And then I have educated myself. And through that education, I realized what the needs are and why it is important to be accepting to individuals who maybe had family members who were LGTBQ, but really within their own roles had not worked with families that much. They described many training needs – they wanted to support. They just did not know how.
This project really identified some concrete areas for adaptation of community health worker models. The first thing that became clear is that we really want to think about who we mean when we are talking about having a navigator or a community health worker model. What became clear is that it is important for all the community health workers to have training around how to work with families, but that parents are going to have different needs than their youth. For a parent, it might be valuable to actually have a community health worker who is more similar to them in terms of the culture they come from. The youth may benefit from having somebody who is also a peer and part of the LGBTQ community, but that individual – those might be different individuals who are working with the family and helping navigate this relationship.
There needs to be in training for community health workers at a content related to different terms. What is sexual orientation? What do we mean when we say non-binary? Why is it different? Why are gender and sexual orientation different?
For many people in this call, these might seem basic issues. But it is a place that there were lots of questions for adults who are supporting youth, including the community health workers. We want that to be part of the training.
What types of family dynamics come up and how do you navigate those family dynamics when you are working with a family of LGTBQ youth? And what resources are available within the community? It really was important to make sure that you are addressing the intersection of the cultural norms when working with parents and youth and that those might look different with how you are addressing those needs.
This means that the navigation model itself might then extend to have more education for parents around the role of parental support and terms, how to connect to mental health services, and how to advocate and navigate across systems of care specifically for trans youth.
I am going to pass it back to Dr. Broder-Fingert.
SARABETH BRODER-FINGERT: Thank you, Dr. Barnett. That was a wonderful overview of our findings. I am tasked with the heavy job of summarizing our findings. I actually think we can do it pretty quickly because traditionally CHWs have been thought of as a bridge, a bridge to services for families who have traditionally had challenges getting services. And in this study, we were particularly looking at CHWs, whose role it is – bridge youth to mental health services and community resources.
But I think what has been a really interesting finding from this study is that youth are really eager for a bridge to help them navigate the relationship with their parents, LGBTQ particularly because I think that is a unique aspect of this potential role for LGBTQ youths and certainly something that CHWs could do with appropriate training that could be incredibly valuable for these families.
If we continue to think about CHWs as a bridge, we can think about the traditional bridge. We can think about this additional bridge of the youth to parent relationship and how can we support that.
And then we also have the parent and their needs. Parents and traditional family navigator or CHW relationships. The parents are part of the family unit and the CHW is supporting the family unit and getting mental health services for the youth.
But in these interviews, we found that parents are actually eager for their own support in understanding and supporting their child whether it be understanding the terms that are used, the child’s identity, or the stress that the parents report to us and the potential need for their own mental health services around how to cope with their child’s identity.
There is another bridge that I think needs to be added to this model if we are going to formally support LGBTQ youth. Again, we have the standard bridge to mental health and community resources. We add on the bridge between the youth and the parent and then yet another bridge for the parent for their own mental health and their own community resources.
Again, what are the final implications? We think that family navigation is a really important model that could really help families overcome the cultural and logistical barriers in accessing mental health. But we do think that what our study shows is that adaptations are certainly needed to improve access to services and allow this model to be effective in this population. And particularly CHWs report a desire for more training and supervision about topics related to LGBTQ youth.
Future directions. We are now working on hopefully developing CHW training specific to LGBTQ youth. We are also working to develop resources that the CHWs and the families suggested that were needed for the community. And then some other considerations. As we mentioned, the youth and the parents did report some different needs and particularly around their identities. And we are thinking about whether or not a peer mentoring model might be more effective specifically for the youth.
We are also thinking about parent training and support groups because of that need for the parents to have some sort of bridge to their own mental health community resources. We also want to highlight the finding that we heard many times that this model could be particularly valuable for trans youth who experience even more barriers than other populations.
Finally, we want to thank NIMH for our funding, of course, our wonderful advisory boards, our research team and finally without our participants who were amazing to participate in this study, none of this would be possible of course.
Now, we are going to turn it back over to Dr. Tamara Lewis Johnson, who is going to start helping field some questions.
TAMARA LEWIS-JOHNSON: Great. It Looks like there are a lot of really interesting questions. I am just going to take them right as they are presented here. Thank you to all the viewers who shared questions.
The first question is could you really expand on what age group of youth were being served. I think you talked about that a little bit, but there may be some variation between the age group of the youth that were served in Santa Barbara versus those who were served in the Boston area.
MIYA BARNETT: I wanted to just – I saw that question and I think it came up when Dr. Israel was talking about youth. I do think that is important to talk about. Just to clarify, the youth we interviewed were emerging adults. They were already 18 or older. But Dr. Israel, did you want to talk about what age of youth you were talking about with the types of outcomes you were referring to.
TANIA ISRAEL: Sure. Thanks so much for that question. The Trevor Project survey from this year that I was sharing some of the results from, they were looking at youth aged 13 to 24. It was a fairly broad range of teenagers up into emerging adults.
TAMARA LEWIS-JOHNSON: Thank you. Another person asked – another viewer asked – I am just going to read this. I have heard that some cultures are more accepting of gender minorities than sexual minorities. I am wondering if this is the case for the Native American population. I would have initially thought the suicide attempt rate would be lower because of some cultures accepting those who are two spirit, but that group still had the highest suicide attempt rates. I think, Dr. Israel, that question is directed to you.
TANIA ISRAEL: Sure. Thanks for that. There are cultural differences in terms of acceptance and historical acceptance of transgender and gender non-binary folks and certainly within some Native American cultures that is true. I hear the person asking the question saying, how is that not protective.
The other thing to keep in mind is that the more types of discrimination that youth are experiencing, the higher the rates of suicidality and certainly Native American youth are experiencing a good deal of that so not just based on gender identity and sexual orientation but certainly based on being Native American. And, in fact, Native American people have a particularly elevated suicide rate compared to other ethnic groups. I think that probably helps to explain more of it than the acceptance within the community and culture.
TAMARA LEWIS-JOHNSON: Here is another question. How have community health workers, navigators, and promotoras’ efforts shifted during COVID to accommodate community access during this time?
MIYA BARNETT: I am happy to take this question. Community health workers have really been at the frontline during COVID-19. We all spoke pretty extensively of the role of community health workers within mental health. But they play many roles with social services and physical health in whether there are volunteers in community embedded or within health systems. Community health workers and their services were impacted during COVID-19 just like any other health care system. There were shifts to telehealth, but also, they have been seen as frontline responders across the world to COVID-19. The roles that community health workers have and their ability to build trusting relationships within their communities have been crucial in doing vaccine advocacy, contact tracing, testing, education. It is just really important to recognize, again, taking an intersectional approach, but these individuals were often being doubly impacted by the pandemic. They were part of the frontline worker group who had their own stress and mental health impacted so much by the challenges of the pandemic and our members of the communities who have been especially hard hit because of COVID.
So it is recognized that community health workers have had a huge role in the COVID-19 response. In fact, the American Rescue Plan dedicated $330 million toward supporting community health workers. But it is a group that has also had a lot of vulnerabilities and stressors put into place, including the shift to telehealth, having challenges based on all the challenges that you might imagine like whether there is access to the Internet and – devices. I think we all in our projects had some different experiences working with community health workers and what that shift looked like. But I really do want to commend the role that they have played in COVID-19 and respond to how they have not just been addressing the things we talked about, but also really at the front of the pandemic response.
EMILY FEINBERG: I just wanted to second what Dr. Barnett said. We are sitting on different sides of the country, but really experienced very similar things.
The biggest shift that we saw initially was from toward meeting just basic needs. Food insecurity was huge. Families were confined to homes. We had newer situations that community health workers were dealing with where families had no food in the home because they could not leave. They were the ones who were really dealing with this and finding the community resources to get food into people’s houses. It was really on the ground concrete work.
The other thing that as sort of things have stabilized a bit is the challenges that they have had in doing some of the traditional cross-sector collaboration work that they had done before, particularly work with schools, early intervention agencies, and other community mental health agencies, which had essentially shut down. They were maybe providing services remotely but finding a contact person and how to reach someone had been incredibly challenging. I think it has added the stress that they have had both in their work in the incredibly high needs of the families they are working with. Also, their work has really taken – it is just much slower and much more intense and takes longer to accomplish the same goals.
But the work that they are doing is amazing that they have figured out ways to connect with families. They have mentored families through how to connect remotely, which many families really needed one-on-one tutorials to do and they played an amazing role.
TAMARA LEWIS-JOHNSON: Here is another question. Can you speak to both the workflow of how the community health worker is utilized by the practice as well as the funding? For example, can you bill for community health worker services or is this grant funded or something else?
MIYA BARNETT: I am going to jump on the funding and then Dr. Feinberg, if you could take – or Dr. Broder-Fingert, if you could take the workflow of the navigation model. But I just had to jump on funding because this is a big soapbox that I like to get on.
Community health workers. One of the greatest challenges to implementation and sustainment of community worker models within primary care or other community settings are challenges with billing. A lot of work within this field has been done with research grants or philanthropic grants. Because of challenges with billing and not having codes that could be billed directly to community health workers and this is something we hear all the time is a challenge, a number of states have already passed bills that allow community health workers to bill within medical settings. And other states are considering them, especially in the context of COVID and how important it could be. But if this is something that feels really interesting to you and relevant to you, I think it is a valuable thing to look into what is happening at the local level and also advocate for change that the community health worker services be billable because it is hard to implement and sustain without that financial support both for the systems and also to have equity for the community health workers, getting paid for their very important labor that they are doing. I will say that and pass it to somebody else to talk about what that workflow looks like within a clinic.
SARABETH BRODER-FINGERT: I will let Dr. Feinberg talk more about. I just want to give a little plug again for our paper because we talk about this as well as some of the challenges around billing and sustainability. If you are interested, I would definitely keep an eye for that.
But I will let Dr. Feinberg talk about the workflow specifically within the clinic.
EMILY FEINBERG: I will talk about our experiences as well as the experience at the safety net hospital that we are affiliated with. Generally, the navigators are on sight and they are on the floor during sessions. Sometimes a family is identified as someone that navigators should be with prior to their visit based on what we know about the family and their needs.
Our health center does screening both for behavioral needs as well as for material needs. We identify a variety of needs through that process. And when a need is identified, there is a navigator there to meet with the family and just – they are introduced as part of the team and as someone who might be able to help them with the need that they have identified. As I said, that could be a material need or it could be a mental health need. It could be a need for maternal or parental mental health services that is included within the scope of our workflow.
If there is not someone on site then we have a referral network, essentially an electronic record. We have a portal the referral goes. There is telephone contact made. I am not sure if that answers your question, but that is kind of how it works. And then the community health worker or family partner or navigator takes it from there.
TAMARA LEWIS-JOHNSON: Thank you, Dr. Feinberg and Dr. Barnett. This is another question. How do you work with a family that has totally disowned their child?
SARABETH BRODER-FINGERT: Actually, Dr. Barnett, are you willing to start on that one because I think this is one space where the difference between the models might come into play a little bit because it is different when a health center is working with the child who has been disowned by the family versus a community organization. I do not know if you want to say something about the promotoras’ ability to work with different family members as the family desires or as the individual desires versus the health center’s need to work with a family unit in a little bit of a different way.
MIYA BARNETT: I was going to pass to Dr. Israel and ask about her other work. I think that what this really comes up is the idea of adaptation and treatment goals being important and who is the best fit for family navigation and what is the goal. I do think that – unfortunately, we know that families disowning their LGBTQ youth is common and that it is a cause of homelessness. It is a cause of very great use of the foster care system and that the rates of these really tragic outcomes can be quite high within this population.
That is a youth that is going to need a lot of services wrapped around them and have a lot of support. Unfortunately, that might not be working with the parent if there is just no room for change there. I am not going to say that there is never room for change. I think the first thing that we would want to think about is really who are we targeting if it is a youth who is completely estranged from their parent and still needs services. That could still be a navigator role.
And in fact, that could be a really important place for a navigator to come into play because there might be even more systems involved for this youth. But that role is maybe going to look different and potentially even be a different individual, a different type of individual than a navigator who is really doing family navigation where the role is about working with the parent as a kind of intervene early before this type of outcome happens and provide them with education and support to help them help their child. I think that for me is where I was thinking about differences in models.
Does anyone else want to say more about that?
TANIA ISRAEL: I want to say yes, absolutely, all of that. I think that was a great answer.
The other thing that I would add is that in the same way that parents can play a supportive role in an unsupportive role, there are lots of other entities that can do either one of those two. Sometimes we think about religion and church being a very restrictive or exclusionary place for LGBTQ youth. But it also may be the place that parents are going to turn. It can also be a place that we can look to in terms of how can this be an affirming environment. How can both lay people and the church leadership and helping people in those roles support families and help them to understand more about what is going on with their children and to be more supportive?
Extended families are also something that is very much a cultural value if there are extended family members who can help to support the child directly and/or work more directly with the parents to try to help them to be more supportive. I think we need to think about all of the different places where there might be supports. I think that Dr. Barnett’s point about that child is going to need a lot of support and you do not necessarily want to go only through indirect roots that you have to make sure that that child is getting the support that they need.
TAMARA LEWIS-JOHNSON: Thank you, Dr. Israel. Where do we find additional training to support sexual and gender minority youth and their families? What is recommended?
I am going to add another one. Are there any insights into building some of the supports mentioned into the BIPOC community?
TANIA ISRAEL: I would like to respond to that question especially about training to support SGM youth and their parents. I had mentioned – I know that there is a particular need for parents of trans and non-binary youth. I had mentioned before that Dr. Em Matsuno has a parent support program that is available online. I want to put that – should I put that in the chat or –
TAMARA LEWIS-JOHNSON: Yes, put that in the chat.
TANIA ISRAEL: I just put it in the chat for everyone. There are two different links that I am providing because I think that that is a great way. It is accessible in terms of being free and being online. I would recommend that as one place to start.
SARABETH BRODER-FINGERT: I will just add, Dr. Israel, that there is a huge need. If there is anyone on this call who is interested in this area, I think actually someone in the chat said they are interested in doing work in this area. There is a huge need for more parenting supports and interventions. If this is an area that you might be interested in, I would strongly encourage you to pursue it because I would agree that Em’s intervention is phenomenal. But we need many more interventions out there for all different people, all different communities and just the capacity to support the number of parents that need the support is not there right now.
MIYA BARNETT: Yeah, what I will say is as far as training for community health workers and family navigators – what we heard is that it is not happening at least within the communities that we did our interviews with. We also want to recognize that that is a limited group. As far as we know, we do not currently know of these trainings specifically for community health workers and family navigators. That does not mean that are not out there and it is always better to work from things that out there and have been shown to have an evidence base.
But this is what happens sometimes with training models is sometimes the community has built something and sometimes there really is a need. Right now, what we are seeing is that need, and we are working on adapting those training modules. But we do not have them to share yet.
TANIA ISRAEL: I think the question about building these things into BIPOC communities – I really appreciate that question. I think that is exactly what these kinds of programs are and intended to do. There are people from the community who have the training and can help people navigate these systems. I think that that question is exactly in line with what the intention is of community health workers.
TAMARA LEWIS-JOHNSON: What are some of the examples of the specific mental health services that navigators or community health workers might connect LGBTQ youth to? Are those services already adaptive to meet their specific needs?
MIYA BARNETT: This is such a good question, and it is going to be so context specific. The ability to connect people to mental health services that already are gender and sexual orientation affirming is limited in many settings. I think this comes into larger systemic issues and potential larger solutions related to online interventions and telehealth and what not and training our mental health workforce more around these issues. This is really a both/and question. Yes, there are services some places that could be directly responsive and not everywhere.
SARABETH BRODER-FINGERT: I would just add two things. First of all, I think we heard in our interviews many times that the community resources do not exist. And this is a problem for a number of things that CHWs are tasked to do. Sometimes we call it the bridge to nowhere that they are supposed to bridge people. But if there is not something at the end of the bridge that could be a challenge. Potentially, this is a role that CHWs could play. If they had the resources, they could know which mental health services are LGBTQ competent or affirming because that is something I hear quite frequently. I need a therapist for my child. Do you know one that is LGBTQ friendly? Wouldn’t it be great if the CHWs had the resources to be able to help families bridge to those specific LGBTQ-friendly therapists?
I think the other thing that I love about this question is, as Dr. Barnett was mentioning, some of the training for CHWs really needs to be context specific. The community resources. That is a huge part of what CHWs link to. And the resources in Boston are different than the resources in Santa Barbara. You cannot really have one training module that you could really launch nationally for all CHWs because they really need to understand the community resources to effectively do their job.
As we were thinking about training, which was a big issue that came up in a number of our interviews, you not only want to think about an LGBTQ 101, what do these terms mean, how do you be culturally competent among LGBTQ youth and their families? But you also need a what do we need to know to do this successfully in Santa Barbara. What are the local resources that we can connect to? Putting on my implementation science hat, how do you implement and disseminate a training that is so context specific I think is going to be another aspect of the future work that we want to do in this space?
MIYA BARNETT: I am just going to say one more thing, which is a community health worker model that we really did not talk about in this presentation but has been used widely and globally is doing more of a task shifting, task sharing approach where it is the community health workers who are providing prevention or intervention.
In that realm of the bridge to nowhere, this is something that I like to talk about a lot is that the community needs to think about what the context is and do they have services to link to. If they don’t, is the role of the community health worker better served to be the bridge or is it to be the provider? The reason that community health workers are most frequently tasked as providers in a low and middle-income countries is because there is a high recognition that there are not providers who could provide those services. It is best to be done by a community health worker.
In the United States, we have more mental health providers, but we do not always have specialized mental health providers. And actually, there is many populations because of the language that is spoken or where they live in the country that do not have enough mental health providers. Thinking about how we could learn from models that have been used in low and middle-income countries and implement them to address disparities here, making sure that the training and supervision and financial support and all of those things are there and are the types of solutions that we need to be thinking about.
TAMARA LEWIS-JOHNSON: Thank you so much, Dr. Barnett. I just have gotten the cue. We have one last question. I will move forward with that. Are there specific resources for working with black trans youth and families that you would recommend?
TANIA ISRAEL: I just want all of the researchers on the call to hear that question because I think we all need to really be engaged in trying – I think that the call for these resources is so clear. The need for these resources is so clear and we need lots more. Unfortunately, there is not a specific thing that I have that I suggest. But we are working on trying to figure out what is most needed in specific communities because I think what is too often done is that we look at a broad intervention and then we say how can we adapt it for these other communities. I think that really this kind of project starting with minoritized communities and looking at the needs and how we can meet them is a really valuable way to go. I just call on all of our colleagues to join us in these efforts to develop community-specific interventions to support.
TAMARA LEWIS-JOHNSON: Thank you. I want to thank all the panelists for participating. I am just now going to – if we could go to the last slide. I want to thank all the viewers who hung in there with us for the hour and a half that we have. This is an emerging area and an important area of research that requires further attention. If you have programmatic questions, you know how to reach me. If you have general information and status about the webinar recordings, you can contact us at this web address.
I wanted to also say that this will be – there will be a transcript that will be developed for this webinar. It will be archived on our ODWD or Office of Disparities Research and Workforce Diversity website. It will be available within a month or so. I just want to thank everyone, all the panelists, all the staff for participating and enjoy the rest of your afternoon.
(The webinar adjourned at 3:30 p.m.)