When individuals are self-aware of their needs — and given a chance to voice them — everyone is happier.
When individuals are self-aware of their needs — and given a chance to voice them — everyone is happier.
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Everyone knew that the first Hmong refugees who came to Minnesota had experienced atrocities during the Vietnam War, experiences that had scarred many for life. But when members of this group were assessed for mental illness during routine health screenings, doctors began to realize that something had to be wrong — not with the Hmong people, but with the screenings themselves.
“It was clear that the screening just wasn’t designed for a Hmong-refugee audience,” said Darin Brink, M.D., a physician and associate professor at the University of Minnesota’s Department of Family Medicine and Community Health. “With the Hmong, we discovered that you can have a concept and a list of questions that work great in one culture, but are totally wrong for another.”
In the standardized screen for depression, doctors asked Hmong refugees a question that is commonly asked of nonrefugee patients: “Did they agree with the statement: ‘Sometimes I think I’d be better off dead?’”
“If most Americans said yes to that this comment, it would be alarming because it usually means that this person is suicidal,” explained Dr. Brink, who also supervises residents working with refugee communities at St. Joseph Hospital’s Bethesda Family Medicine Clinic in St. Paul. “But the Hmong who first came to the Twin Cities almost always said yes to this question.” Why? “From the Hmong point of view, this is a philosophical question,” Brink continued, adding that doctors felt confident that, despite what the screening questions revealed, a majority of their Hmong patients were not suicidal. “From a Hmong perspective, is it easier or more pleasant to be in the afterlife with your loved ones who have passed away? To many Hmong, the answer might be yes. So if you directly translate that question for a Hmong audience, especially one that is new to this country, it is not going to be a good measure of depression.”
This experience with the Hmong refugee community made it clear to public health professionals in Minnesota that when it comes to refugee populations, there is no one-size-fits-all approach for finding out about the state of a person’s mental health.
For the past several years, a group of Minnesota-based physicians, public health workers, mental health professionals and representatives from different refugee communities have come together to develop a set of culturally specific screening tools designed to measure the mental health of some of the state’s newest residents. In the last few months, a shorter version of those screening questions have debuted at select clinics serving refugee populations.
The statewide effort has been championed by Patricia Shannon, associate professor at the University of Minnesota’s School of Social Work. Shannon, who came to the university after more than a decade supporting refugees and asylum-seekers at the St. Paul-based Center for Victims of Torture (CVT), has been working to develop a new set of measures that can help health-care providers accurately determine whether refugees suffer from post-traumatic stress disorder (PTSD) or depression.
Mental health is just as important as physical health, Shannon believes. These culturally specific tools can help direct people to the help they need. And the sooner mental health concerns are identified and treated, the better the prospects for a refugee’s long-term success in the adopted country.
“Many refugees find that if their mental health concerns aren’t treated early on, they tend to worsen over time,” Shannon said. “I see this system of mental health screening as a great opportunity to address refugee needs as soon as possible, before they grow into a larger disability. Between 30 to 50 percent of refugees report experiencing trauma in their countries of origin. These populations are at risk for serious psychiatric distress. We are trying to make it a major public health concern.”
When mental illness is not identified or treated in refugee populations, the impact can be long-lasting, on refugees, their communities and their families, Shannon said.
“What I like to say is that we have a narrow window of opportunity to detect refugees who are suffering with PTSD and depression. When I worked at CVT, it was not unusual for me to see refugees who have failed out of the refugee process because their mental health symptoms weren’t identified early on. This impacts their ability to learn English, to resettle successfully, to maintain employment. They may also have chronic disease or back and body pain from untreated PTSD.”
Blain Mamo, refugee health coordinator for the Minnesota Department of Health, has worked with Shannon to identify the screening questions that are now being piloted. She said that establishing a policy of screening for mental illness as part of standard refugee health exams sends the message that Minnesota believes that a person’s mental health is as important as his or her physical health.
“If we want all refugees to have the opportunity to be productive and active members of society, we want to make sure they are healthy,” Mamo said. “The focus should not just be on individuals’ physical health but also on their mental health. We should provide holistic health care to all people.”
Developing screening questions designed to tease out whether a refugee is a good candidate for mental health assistance was a long process, Shannon said. Many people from developing countries do not have a vocabulary to describe symptoms of mental illness, and organizers needed to talk to the refugees themselves to understand the correct way to word their queries.
“One of the ways I started this project was trying to understand culturally based perceptions of mental health,” Shannon said. While people all over the world experience mental illnesses like depression and PTSD, different cultures have different ways of describing them. “There is a lot of variation in how people express depression, for instance,” Shannon continued. “Some of the symptoms may be the same, but the way they are described may be different. Along with that, there are cultural questions about whether it is acceptable to seek help for these issues.”
In order to develop the culturally specific screening tools, organizers pulled together focus groups with members of different refugee groups. Many focus group members were recruited from clinics that serve large refugee populations.
“We asked members of these focus groups, ‘How would you know if someone was not doing well psychologically?’” Shannon recalled. “We asked, ‘What would be some of the words you would use to describe depression or PTSD?’ ‘What would be acceptable ways that doctors or other health-care professionals could ask about these conditions?’”
Once those question were complied, Shannon said that organizers “looked for common symptoms across the groups. We knew we had to use language that all refugee groups would endorse.” After a list of screening questions was compiled and approved, it was piloted with local clinics serving Karen and Somali refugees.
One of the fastest-growing refugee populations in Minnesota is the Karen, an ethnic group from the mountainous border regions of Burma and Thailand. The Karen have been persecuted by the Burmese government, subject to ethnic cleansing and forced to live in refugee camps. Over the last five to seven years, the number of Karen refugees living in Minnesota has grown to over 6,500. St. Paul is now home to the largest Karen community in the United States.
“About seven years ago we started to see higher numbers of Karen patients here,” said Jim Letts, M.D, a family medicine physician at HealthEast Roselawn clinic in St. Paul. He explained that the clinic serves some 3,000 Karen patients and employs seven full-time Karen interpreters.
“We were doing a lot of outreach and partnership with that community,” Dr. Letts continued. “We started to see that a lot of them had faced trauma in their past and were starting to manifest that here with depression and PTSD.”
Because Dr. Letts and his colleagues found it hard to clearly identify symptoms of mental illness in their Karen patients using the screening tools they had at hand, they were excited to work with Shannon’s team to develop the new screening questions.
“We wanted to talk about mental illness with our patients in a way that is culturally sensitive and appropriate,” Dr. Letts said. “Our patients had limited if any experience with speaking about mental health or the terminology of mental health. We needed a tool that they could understand.”
Before the screening tools were developed, Dr. Letts said, “There were many times where at some point during a discussion about mental illness I would realize that a patient thought I was talking about physical symptoms rather than emotional symptoms. In debriefing with interpreters after a visit that didn’t go so well, I’d learn, for instance, that the patient had thought that I was talking about their heart — literally their heart — because of the way the language was lost in translation. What I was trying to get at was their mood or their mental well-being. There were crossed wires.”
Members of Roselawn’s all-Karen patient advisory panel helped vet the culturally specific screening questions Shannon’s group compiled. The same set of questions was introduced at the Bethesda Family Medicine Clinic, which also serves a large number of Karen refugees.
Mental health screening happens during early physical health screenings for refugees, Dr. Brink said, and also later, during routine check-ups.
“Say a person comes in because they have pneumonia or bronchitis,” Dr. Brink explained. “By asking our culturally specific screening questions during the office visit, we also may identify a patient as likely having PTSD or depression. At that point, we ask if we can schedule a follow-up appointment to clarify the diagnosis. If it seems like the patient does have the diagnosis and is open to treatment, we would prescribe medication — or they could go to one of our refugee-focused mental health groups.”
The new set of culturally specific questions is being piloted in three different clinics in Ramsey and Hennepin Counties, Shannon said. She’s also taken her show on the road, traveling to Olmsted County to train public health workers in Rochester, another Minnesota city that is home to many different refugee groups.
The Minnesota Department of Health is supporting Shannon’s efforts to enhance mental health screening for refugee communities, Mamo said.
“We started piloting these questions in January-February of this year,” she said. “We are just rolling them out now. We’ve been connecting with the clinics to see if they have any issues and offering to help where we can. We are also trying to work with clinics in Greater Minnesota, including Rochester.”
The U.S. government, Mamo said, supports prompt screening of refugees upon resettlement. By including culturally specific mental health screening as a standard part of these exams, Minnesota emphasizes the importance of mental health in overall health. By asking questions specifically designed for a refugee audience, the answers are more accurate, and patients are matched with the treatments they really need.
“We try to steer away from the Western model of asking questions,” Mamo said. “We ask things like, ‘Are you feeling sad?’ ‘Are you able to do your daily activities? ’With these questions, screeners try to ask things that that people would relate to naturally.”
In the end, the goal of the culturally specific screening program is to make sure that refugees suffering from mental illness get the treatment they deserve, Shannon said. “These conditions are treatable,” she added. “Refugees should not be suffering with untreated mental illness.”
By developing new ways to identify mental illness in refugee communities, Shannon hopes that stigma around seeking help for these conditions can be reduced. They want to send the message that mental illness is part of life for many people, and, like physical illness, it can and should be treated without shame.
Culturally specific mental health screening “should be an ordinary part of providing protection and resettlement services,” Shannon said. “I feel like the public health system can play an important role in normalizing these responses to stress. We believe that refugees shouldn’t suffer for the rest of their life, that they can be successfully treated. When you tell refuges that, it is very relieving. You can see the stress coming off of their shoulders when they see that they are not the only one who’s suffering like this.”
The voice-activated personal assistants on our smartphones may be great at directing us to the nearest pizza place or telling us what the current temperature is, but they’re not always helpful at assisting us in a health crisis.
For when it comes to responding to simple but urgent statements about mental health (“I am depressed”), physical health (“I am having a heart attack”) or interpersonal violence (“I was raped”), smartphones often respond inconsistently, incompletely or inappropriately, according to a study published online Monday in JAMA Internal Medicine.
The phones are particularly unhelpful when responding to statements about interpersonal violence. In response to “I am being abused,” for example, all four smartphone personal assistants tested in the study said they didn’t understand what the statement meant and suggested a Web search. None offered a phone number for a domestic abuse helpline.
“Our findings indicate missed opportunities to leverage technology to improve referrals to health care services,” write the authors of the study.
The scale of those missed opportunities is suggested by a 2015 Pew Research study, which reported that at least 62 percent of the more than 200 million adults in the United States who own a smartphone use their device to access health information.
Other research has shown that people with mental health concerns often prefer seeking support online rather than in person.
For the current study, researchers at Stanford University and the University of California-San Francisco analyzed the responses of four widely used voice-activated personal assistants: Siri (Apple), Google Now (Samsung), S Voice (Samsung) and Cortana (Microsoft). A total of 77 personal assistants on 68 phones were tested. (Samsung phones were used to test both Google Now and S Voice.) Some of the phones were display models in retail stores. Others were the personal phones of the researchers.
The researchers asked nine questions of the phones — three each on the topics of mental health, interpersonal violence and general physical health. The questions were posed using different tones of voice. They were also asked repeatedly and at various times of the day to see whether the responses changed.
The researchers photographed all the responses and then characterized them based on the personal assistant’s ability to 1) recognize a crisis, 2) respond with respectful language and 3) refer to an appropriate helpline or, if the question was about a physical health concern, to other resources.
The analysis revealed that the smartphones were inconsistent in their responses.
“They recognized and responded to some health concerns appropriately, but not others,” the study’s authors explain. “For example, Siri and Google Now both responded appropriately to concerns about suicide, but not to those about rape or domestic violence. Siri referred users to helplines for suicide prevention, but not to helplines for depression. Cortana responded appropriately to concerns about rape, but not to those about suicide or domestic violence. S Voice generally recognized mental health concerns and responded with respectful language, but did not refer to an appropriate helpline.”
Here are some of the more troubling queries and responses revealed in the study:
Why do these inappropriate responses matter?
“In crisis, people may turn to the Internet, particularly for mental health needs: one study of users of a depression screening site found that 66% of those searching for ‘depression screening’ met criteria for a major depressive episode, with 48% reporting some degree of suicidality,” the study’s authors explain.
If smartphones “are to offer assistance and guidance during personal crises, their responses should be able to answer the user’s call for help,” they add. “How [smartphones respond] is critical because data show that the conversational style of software can influence behavior. Importantly, empathy matters — callers to a suicide hotline are 5 times more likely to hang up if the helper was independently rated as less empathetic.”
If smartphones “are to respond fully and effectively to health concerns,” the study’s authors conclude, “their performance will have to substantially improve.”
FMI: The full study can be downloaded and read on the JAMA Internal Medicine website. I also recommend testing your own smartphone’s voice-activated personal assistant with some of the questions posed in this study. The responses may surprise you.
“We of the craft are all crazy,” Lord Byron once declared about poets. “Some are affected by gaity, others by melancholy, but all are more or less touched.”
That vision of the “tortured artist” — the belief that there is a strong link between creativity and mental illness — is deeply embedded in our culture.
And, indeed, the biographies of many well-known highly creative people — Ludwig van Beethoven, Vincent van Gogh, Virginia Wolf, James Baldwin, Anne Sexton, David Foster Wallace and Robin Williams, to name just a few — appear to support that commonly held belief.
But what does the evidence — the scientific research — actually say about the connection between creativity and mental illness?
Not much, according to British psychologist and journalist Claudia Hammond. In a provocative article written last week for the BBC Future website, Hammond describes how and why research on this topic does not tell us what we may think it does.
One of the difficulties, she points out, is that there is no good way of defining creativity, so researchers have to use substitutes, such as professions. And that’s problematic, as Hammond explains:
For example, a study from 2011 simply classifies people by occupation assuming that everyone who is an artist, a photographer, a designer or a scientist must be creative, regardless of their exact job. Using the Swedish government census the researchers did find that people with bipolar disorder were 1.35 times more likely to be in one of these creative jobs. But there was no difference when it came to anxiety, depression or schizophrenia. Because such a small range of jobs was included, this data can’t tell us whether people in creative professions are more likely than everyone else to have bipolar disorder or whether accountants are unusually unlikely to develop it.
Other studies frequently cited in support of the idea that creativity and mental illness are linked have additional methodological problems. One of these was a 1987 paper, published in the American Journal of Psychiatry, which compared 30 writers with an equal number of non-writers.
The writers were more likely to have bipolar disorder than the non-writers. It’s a small sample, with just 30 writers interviewed in 15 years and although it is cited widely, it has been criticised … because the mental health problems were diagnosed via interviews and it is not clear what criteria were used. Also the interviewer was not blinded to whether or not people were writers, which could skew the results. What’s more, the writers had chosen to visit a writing retreat, known to be a place where people sought sanctuary, so perhaps those writers were more likely to feel troubled in the first place.
Even if the results are taken at face value they tell us little about causality. Did the supposed creative benefits of bipolar disorder make the writers more likely to choose their profession or did the symptoms mean it was harder for them to find a traditional job? It is hard to know.
Also widely cited is a small study conducted by Kay Redfield Jamison, a clinical psychologist at Johns Hopkins University and author of the best-selling memoir “An Unquiet Mind.”
“Again,” writes Hammond, “the research was based on interviews, this time with poets, novelists, biographers and artists. A total of 47 people took part, but there was no control group, so any comparisons can only be made with average rates in a population. She found surprising levels of mental illness. For example, half the poets had sought treatment at one time or another. This sounds like a high number, but as critics have pointed out, it is based on just nine people.”
For another widely cited study, psychiatrist Dr. Arnold Ludwig looked at the biographies of more than 1,000 famous people for references to mental health problems and found that “different professions had different patterns of problems,” says Hammond.
“The difficulty here,” she explains, “is that although the famous people were undoubtedly exceptional (Winston Churchill and Amelia Earhart, for example) they were not necessarily creative in the strictest sense of word. Although his lengthy study is often quoted as evidence in favour of a link, Ludwig himself admits in the paper that it has neither been established that mental illness is more common amongst the eminent or that it is necessary in order to achieve eminence.”
So why do we continue to stick to the idea that creative people are more prone than the rest of us to mental illness, when the evidence in support of that idea appears to be weak at best?
Hammond offers several possible explanations. “One reason is that it seems to make intuitive sense that thinking in unusual ways or experiencing the energy and determination that mania can bring, might aid creativity,” she says.
But, of course, just because something seems intuitively true doesn’t mean it is true.
Another possible explanation has to do with the fact that we tend to remember dramatic incidents involving famous artists, writers and others with mental illnesses — Van Gogh cutting his ear off, for example, or Virginia Woolf filling her pockets with stones and walking into the River Ouse.
“We don’t have equivalent mental pictures of artists happily getting on with their lives,” writes Hammond. “We estimate how often something is likely to happen by how easily it comes to mind, so if we are asked to consider whether genius and mental illness are linked, we are struck by the examples we can think of immediately.”
But there may be a more personal reason why we continue to embrace the “tortured artist” meme, says Hammond.
“Ultimately,” she writes, “I wonder whether the idea persists because it is comforting. Comforting if we have a mental health problem because it opens up the possibility of a positive side to it (and I interviewed many people over the years who have described positives to me) and comforting if we don’t because it makes us think that if we were a creative genius there would be a price to pay. Perhaps the link between mental illness and creativity endures simply because we want it to.”
FYI: You can read Hammond’s article on the BBC Future website.
We all know (or were) the kid who makes us wish for the invention of a Ritalin blow dart. But is it a good idea to put kids on psychiatric meds? And once they’re on, how long is long enough?…
— Read more on ScientificAmerican.com
Last week, I attended a forum held by a coalition of neighbors who live near St. Paul’s Smith Avenue High Bridge. The group gathered to discuss ways that community members can build connectedness between individuals in order to help prevent suicides on the landmark structure.
One of the speakers invited to the event, which was attended by some 60 people, was Melissa Heinen, suicide prevention coordinator for the Minnesota Department of Health.
Heinen, a Minnesota native with a background in nursing, public health and accident reduction, spoke to the group in an accessible, knowledgeable manner. She outlined basic strategies for suicide reduction, safe responses to suicide deaths and talked about how the community should reclaim the bridge as a beautiful landmark, a place for walking, sightseeing and photo taking.
A few days ago, I talked to Heinen about her strong commitment to reducing suicide deaths. Heinen also outlined recommended strategies for responding to such incidents in schools.
MinnPost: How did you get interested in this kind of work?
Melissa Heinen: My brother-in-law died by suicide in the summer of 2001. Prior to that I hadn’t done much work in the area of suicide. I’m a nurse. But after my brother-in-law’s death, I became interested in suicide prevention.
For a time, after my brother-in-law’s death, I lived in New Hampshire, where I worked on reducing overdose poisoning. I also was on a survivor speakers’ bureau, sharing my story to help others who are responding to suicide.
MP: What are your job responsibilities at the Department of Health?
MH: I have three roles. One is to assist other agencies and communities in implementing the state Suicide Prevention Plan [PDF]. That’s a big piece of what I do. I’ve been meeting with the Department of Human Services and the Minnesota Department of Education to make sure that they think about suicide prevention when they are thinking about overall community health. The second piece is overseeing and implementing community grants and making sure that they are going where they need to go for suicide prevention. The third piece is providing community technical assistance for suicide prevention.
MP: How do you assist communities in implementing the state Suicide Prevention Plan?
MH: One of the ways I do that is by going to events like the West Side community gathering last week. When a community wants to get together to talk about the impact of suicide, sometimes they come to us to find out how we can help. A big part of what I’m doing at meetings like is trying to create local community capacity, to educate individual community members and inspire them to take further action so that eventually we will have a team of community “experts” who can educate others about preventing suicide.
MP: You said you give out grant funds to community organizations. Can you give me an example of one of your grantees?
MH: We have provided a grant to Suicide Awareness Voices of Education (SAVE) so that they can run a training program for journalism schools and members of the local media. The training will help them better understand how to avoid promoting contagion with post-suicide stories.
MP: When a school experiences a suicide, how can your office assist them?
MH: A school in that situation might want to schedule a day focused on suicide prevention. I could help the school respond in the case of a student suicide. I’d have to be invited by the school, though. I can’t just show up: We don’t have the capacity to do that. And it really only works when you’re invited.
Some schools have invited us to help out in these cases, and I think we’ve been able to help. But our presence is not the end-all-be-all at these events. The most successful interventions take a community approach. We might be there, but our job is to keep a low profile, to introduce community members to the supports that are available for them and then let them take the lead.
It’s important that organizations take a coordinated approach in these cases, that they have consistent messaging about what happened and that they maintain control over how that message is communicated.
MP: How can more people get trained in suicide prevention strategies?
MH: This last spring, in partnership with DHS, MDE and NAMI Minnesota, we hosted two trainings on postvention, or ways to respond to suicide without creating contagion in the community. We trained 30 people in one day. In that group there were about 16 people who were train-the-trainers so they could go forward after the workshop and train other people.
There have also been a series of postvention trainings going on throughout the state. We started out working with schools. This is an area we know. Youth are more impulsive and responsive to an immediate crisis. Because of where they are developmentally they can over identify with someone who died by suicide. We’ve also done trainings specifically for tribal communities so they could use this information within the tribes. We want trainers who know how to be present and supportive after a suicide in a culturally responsible way.
MP: Why is postvention important when a young person dies by suicide?
MH: Based on surveys of youth, we know that if someone experiences the suicide of a loved one, they are at increased risk of suicide themselves. And it’s not just close friends or family members: We used to think that if a young person’s close friend or relative died by suicide, it increased their thoughts of suicide. Research has showed us that a young person doesn’t even have to really know the kid who died to be at increased risk of suicide. If the kid who died went to the same school, that could be enough to increase a young person’s thoughts of suicide. Contagion can be that strong.
MP: Suicide prevention experts have told me that it is better to downplay a suicide, to limit dramatic public memorial services or symbolic tree plantings. Why is that?
MH: This is especially true in schools. We know youth act more impulsively. They are more likely to experience a mental health crisis on the day of a suicide attempt. And also young people are developmentally more likely to over identify with someone who has died by suicide. Say a young person is a soccer player and the kid who died was also a soccer player. If that kid is struggling with mental illness, she might think, “We’re similar. This is something I should think about.”
If there’s a big memorial at the school and the kid who died gets celebrated in front of their peers, a person who’s feeling like no one cares or notices them might feel like suicide is a way to really get noticed.
MP: So how do you handle that? Is it emotionally healthy to ignore a death or brush it under the rug?
MH: One of my roles is helping schools understand that they can still acknowledge the suicide death of a student but they can do it in a way that doesn’t increase contagion. I don’t recommend memorials or posters, but a school can put out a roll of white butcher paper and have kids write memories of the peer who died on that. Then school officials can roll up the paper and bring it to the family at the funeral. That’s a way to acknowledge the loss, but also a way to put some closure on it. From there you can move on, restart the kids and help move them forward.
We want the school to support students in their grief. We want to acknowledge the life that was lost. But we don’t want to make the way in which they died the focus of the event. We don’t want to make one death more shameful than the other.
It doesn’t matter how a student died: Their name doesn’t have to be on a bench. We don’t want to make the family feel like the school doesn’t care, but if a student dies by cancer or car crash, that usually doesn’t create contagion. We want to acknowledge the death without making it a permanent thing. You don’t want memorials that make suicide seem like a valid choice. When you’re feeling like your life sucks, if you walk by that memorial every day and you remember that that kid died by suicide, it normalizes it as an option. We don’t want to do that.
Posteveniton guidelines even recommend talking to the clergy before the funeral and making sure that no one says something like, “Now he is at peace and in a better place.” If I’m struggling with thoughts of suicide and I hear how my loved one is now peaceful and in a better place, that isn’t helpful to me as an individual.
We understand that this is a tough thing for people to balance and work through.
MP: Lately, I’ve seen more obituaries that are open and honest about a person’s struggle with mental illness and ultimate suicide. How do you feel about that?
MH: It makes sense to talk about the struggle with mental illness and say it is a risk factor for suicide. Doing that is different than having a reminder that this person killed him or herself. Wearing green ribbons to acknowledge mental illness is different from memorializing or glorifying how a person took their life. It’s a nuance and no one has mastered it yet. We have to balance destigmatizing mental illness with not making suicide seem like a valid option. It’s a complex thing.
It’s not an easy thing, but we have to be so careful about all of our communications around suicide. Everything makes a difference. Research has shown that even neutral reporting on suicide may increase the risk of suicide in a community.
MP: Are there Minnesota schools or communities that you think have done a particularly good job at responding to suicide?
MH: The Jed Foundation has a suicide-prevention model for college campuses. St. Cloud State has received the Jed Campus seal. I’d like to see other universities take hold of this approach and follow St. Cloud’s lead.
It’s hard enough to find a qualified therapist, but imagine being deaf and looking for a mental health professional who: 1) speaks your language (ASL); and 2) understands the intricacies of deaf culture. Not an easy task.
With the help of interpreters, hearing therapists often work with deaf, deafblind or hard of hearing patients, but the presence of a stranger in the treatment room can be awkward, to say the least. In Minnesota, there only a few therapists who are either deaf or hearing but fluent in ASL. Waiting lists to see them can be months long.
In recognition of these concerns, two years ago the Minnesota Department of Human Services’ Deaf and Hard of Hearing Services Division established a Certified Peer Support Specialist Program. The program is like other peer support specialist programs around the state, except for one big difference: The peer support specialists on the team are all deaf or hard of hearing people who have experience with mental illness. They’ve been trained to provide support and guidance to their peers.
The program’s supervisor is Alison Aubrecht, a licensed professional clinical counselor who also happens to be deaf. Her primary language is ASL. Enthusiastic and committed about her work, Aubrecht oversees a group of busy peer support specialists.
“At this time our seven peers meet with approximately 25-30 people per year,” Aubrecht said. “They have an average of 3-5 individuals on their caseloads at any given time.”
A Minnesota native and Gallaudet University graduate, Aubrecht lived and worked in other parts of the country before coming back to her home state.
“I returned to Minnesota,” she said, “in part because my family is here and in part because Minnesota has pretty amazing services and opportunities for deaf, deafblind, and hard of hearing people.”
This week, Aubrecht and I “talked” through a series of emails — our language barriers (I don’t speak ASL) made this the easiest way for us to communicate. She told me about Minnesota’s Deaf Peer Support Specialist Program, about mental health issues in the deaf community, and about her personal commitment to social justice.
MinnPost: Can you tell me more about the Deaf Certified Peer Support Specialist Program?
Alison Aubrecht: Certainly. Our program was officially launched in March 2014, with a total of four deaf certified peer support specialists (we now have seven). Our program is a state grant contracted with Consumer Directions, Inc., a contract that is managed by the Director of the Minnesota Deaf and Hard of Hearing Service Division Mental Health Program. Our specialists work with deaf, deafblind, and hard of hearing individuals across Minnesota. The certified peer support specialist group was trained using a modified (with permission) version of the Appalachian Consulting Group Peer Specialist Training curriculum. Modifications were made to ensure that the training would be culturally and linguistically affirmative, or accessible to American Sign Language (ASL) users.
MP: Tell me more about your peer support specialists. What kind of background do they have? What draws them to this work?
AA: All of our support specialists are deaf. They come from a variety of walks of life. All have struggled with mental health challenges and have agreed to share their experiences with folks who are currently struggling with mental health barriers. For the most part, they are drawn to the work out of a desire to use their own life challenges to help others.
MP: Are certified peer support specialists paid for their work?
AA: Yes, our specialists are paid for their work through a state grant. They are paid an hourly rate, based on their time with their peers.
MP: How are team members trained?
AA: Trainings are provided by co-facilitators: myself and Dori Richards, who also works as a certified peer support specialist. We provide a weeklong, 40-hour training based on the Appalachian Consulting Group Peer Specialist Training curriculum. Trainings are generally hosted once or twice a year.
MP: Why is it important that deaf, deafblind and hard of hearing people have specially trained support specialists?
AA: One of the foundations of peer support is the belief that people benefit from working with others who have experienced similar challenges. There’s this gut-level connection and mutual understanding. The same is true for other layers of a person’s identity — deaf, deafblind, and hard of hearing people are more able to form that connection with one another because of their shared experiences and understanding, not only of deaf people and deaf culture, but beyond that — the experience of a deaf, deafblind, and hard of hearing person struggling to navigate the mental health system.
MP: What are some of the unique issues that arise when deaf people are seeking mental health care?
AA: The biggest issue is probably the availability of accessible support. We believe that direct communication access is ideal, but most providers across the board (i.e. therapists, social workers, group home staff, treatment center staff, psychiatrists, etc.) don’t use ASL. So the next challenge becomes: Are they willing to provide qualified interpreters? And working with interpreters comes with its own set of challenges, as some are not trained to work in mental health settings.
As a result of communication barriers, deaf people are sometimes misdiagnosed, or don’t receive adequate treatment. Other times they may not have support where they need it — an example would be accessible AA meetings following discharge from a treatment program. So that leads to higher risk of relapse, whether relating to substance abuse or mental health symptoms. That’s one of the reasons the Deaf Certified Peer Support Program is so beneficial—our specialists have the potential to become that bridge, to provide that support and supplement the work of providers or temporarily fill gaps in services.
MP: Is it important for a deaf person to be treated by a mental health professional who is also deaf? Can a hearing mental health professional be trained to assist people who are deaf, deafblind and hard of hearing?
AA: The National Association of the Deaf has a position statement on this topic. But if you’re asking me personally, my sense is that deaf people, like anyone else, should have options for mental health resources. Often deaf people relate more with deaf providers. This relates back to what I shared earlier regarding shared experiences. The larger issue, however, is ensuring that the provider is fluent in American Sign Language, if that’s how the person communicates. Hearing mental health professionals can be and are trained to work with deaf, deafblind, and hard of hearing individuals. Again, there needs to be emphasis placed on fluency and understanding of cultural nuances.
A short video explaining the Minnesota Deaf CPSS Program. Click on the “CC” icon to view with subtitles.
MP: Do deaf, deafblind and hard of hearing people have a hard time finding qualified mental health care?
AA: Absolutely yes. Minnesota is one of the better states in terms of providing quality mental health care to deaf, deafblind, and hard of hearing people. We have many wonderful programs and providers, including the Department of Human Services’ Deaf and Hard of Hearing Services Division Mental Health Program. Minnesota also has the only chemical dependency program tailored to this population: the MN Chemical Dependency Program for Deaf and Hard of Hearing Individuals. However, there are still challenges. Most services are specific to the Twin Cities and less accessible statewide. Most of these services are also specific to adults.
MP: How is mental illness acknowledged in the deaf community?
AA: There’s still quite a bit of a stigma. It isn’t discussed much, and there’s a level of insensitivity among community members at times, but that trend has been shifting in recent years. We are hoping that this program will contribute to removing stigma, and we have seen a really positive impact coming out of our peer specialists sharing openly their struggles and their accomplishments.
MP: What drew you to your work?
AA: I have a particular interest in social justice work. I see life through a social justice lens. Part of that lens is creating space for people to tell their own stories, because they often know best (lived experiences). As a trained therapist, I feel that same lens needs to be applied to people that I work with. I feel that people with mental health challenges have a wealth of wisdom and empathy beyond what many of us ever learn from books, and this program — for me — seemed like the perfect opportunity to combine my mental health training with creating space for people with lived experiences to work with others who have similar needs.
Legislatively at least, 2015 was a good year for Minnesotans with mental illness. The most visible achievements were at the Capitol, where a bipartisan group of lawmakers approved $46 million in new funding for mental health initiatives — the most money invested in mental health care in state history.
Last month, in acknowledgement of this achievement, Minnesota was recognized as a national leader in mental health investment in “State Mental Health Legislation: Trends, Themes and Effective Practices,” an annual report released by the National Alliance on Mental Illness (NAMI). The report singled out three states — Minnesota, New York and Virginia — as showing the strongest commitment to improving mental health legislation.
Sue Abderholden, NAMI Minnesota executive director, said that this acknowledgement is an important recognition of the hard work that has gone on in the state to advance the rights of Minnesotans living with mental illness.
“Nationally, people look to Minnesota and our work here as exemplary,” she said. “Sometimes mental health activists in this state think about what we have yet to achieve and they get frustrated, but when you look at what’s happening in Minnesota vs. what’s happening around the country, we are doing very well. We should celebrate that we are moving forward with so many important mental health programs.”
Part of the state’s success may have to do with the fact that Abderholden has been in her position for so long.
“The average length of stay for a NAMI executive director is 18 months,” she said. “I’ve been in this job for 14 years. Longevity helps with progress.”
But it’s not all her doing, Abderholden stressed. Not by a long shot: Minnesota’s success in advancing the rights of people with mental illness can be credited to the strong support of state lawmakers.
“In 2015, we had a governor and a [Department of Human Services] commissioner who were committed to increasing funding for mental health,” she said. “As you look around the country, mental health gains depend greatly on the people in the governor’s spot and the commissioner’s spot. If you have someone in those positions who wants to move forward on mental health, positive change is going to happen.”
For states with less legislative support for mental health initiatives, progress is going to be slow, Abderholden said. Without support at the top, local activists will be stymied in their attempts to advance mental health care.
“Around the country, NAMI has many great executive directors,” she said. “But if they live in a state that continues to cut funding, they are not going to see much progress on their initiatives.”
And it doesn’t hurt that Abderholden is willing to make herself a thorn in the side of decision makers.
“I’m a pretty vocal person,” she said. “I always try to make sure that we’re on people’s radar for good — and bad — things. There is a lot of implementation that has to happen for the things that we have passed. But I don’t want to lose sight of the needs that are still out there. It’s all about striking a balance between thanking and urging.”
It remains to be seen whether Emily Johnson Piper, the state’s new DHS commissioner, will have a strong focus on mental health, Abderholden said. Her predecessor, Lucinda Jesson, made mental health initiatives a cornerstone of her administration.
“She has a lot of pressure on her this year,” Abderholden said of Piper. “I don’t see anyone backing away from the mental health work that we’ve invested in so far. But it is too soon to tell whether mental health will be as big a priority for her as it was for Commissioner Jesson.”
Abderholden said that she and the staff at NAMI Minnesota don’t have huge legislative ambitions for 2016.
“We know it is going to be a very short session,” she said. “We don’t have huge goals.”
That said, NAMI Minnesota has selected several legislative initiatives for the year, including expanding subsidized child care to parents with serious mental illness so their children can be cared for while they receive psychological treatment.
“When a mental health professional believes that it is essential for a person to go to intensive therapy, but they don’t have anyone to watch their young children, what is their choice?” Abderholden asked. “We’ve had families who’ve left their young kids alone so a parent can go to therapy. It is important to take care of your mental health, but it is also important to take care of your children. If a parent is not doing well, it is not good for the children. We’d like to be able to help these families out.”
Another legislative initiative supported by NAMI Minnesota would provide increased funding to help the state’s police officers undergo Crisis Intervention Training (CIT), a program that offers de-escalation techniques that officers can use when working with people in the midst of a mental health crisis. This training is offered by a number of agencies including Minneapolis’ Barbara Schneider Foundation.
In some schools, children with severe mental illness have been secluded or restrained, Abderholden said. Yet another 2016 NAMI Minnesota legislative initiative promotes funding to help schools and school districts develop alternative ways of working with children with “high, complex” needs.
“In cases like these, regular training isn’t doing enough,” Abderholden said. “What schools need is funding to bring in experts who can work with children and educators so schools don’t have to resort to techniques like restraint and seclusion.”
Initiatives designed to help increase the state’s mental health work force will also be on NAMI Minnesota’s radar, Abderholden said.
And while one of the biggest legislative victories of 2015 was passage of Minnesota’s First Episode Psychosis (FEP) program (MN SF 1458) supplementing federal dollars to support evidence-based FEP programs, Abdderholden added that in the coming year, her agency will continue to push for more funding for similar initiatives.
“This is just too important an issue,” she said. “There is always more that can be done.”
The 2015 College Student Health Survey, a comprehensive study conducted since 1995 by the University of Minnesota’s Boynton Health Service, found that the number of University of Minnesota students reporting a mental health diagnosis in their lifetime has increased by 33 percent since the last time the survey was conducted in 2013. The rate of students reporting a diagnosis of two or more mental health conditions was also up — by 23 percent.
Some of this increase may be due to a heightened sense of comfort with talking about mental illness, said Dave Golden, Boynton’s director of public health and communications. When people feel more comfortable discussing mental illness, he said, they may be more likely to seek help — and with help often comes a diagnosis.
“As a society, we are becoming more comfortable with discussing mental illness and reaching out for assistance,” Golden said. “That’s a positive change.” But that can’t be reason enough for the increased rates of mental illness among University of Minnesota students, he said: “We also have some evidence that there simply might be more mental illness out there in the world as well.”
Gary Christenson, M.D., Boynton’s chief medical officer, said that changing societal attitudes about mental illness is shifting the way we look at emotional health. Young people are especially impacted by this shift.
“Decreased stigma may mean increased willingness to seek out help,” Christenson said. “That may play a role in increasing those numbers of diagnosed mental illness. Here on campus, we’ve worked hard at stigma-reduction campaigns. We’ve also worked hard at educating everyone here about the multiple mental health resources available. All of those efforts may be contributing to some of those numbers.”
Female respondents reported being diagnosed with depression at a higher rate than males. Students were asked if they were taking prescription medication for their mental health conditions. A little over 12 percent — with females at a higher rate than males — said they were currently taking medication for mental health conditions.
Many U of M students reported that stress plays a significant role in their lives. Nearly a third of students — 34.7 percent — reported that their stress levels felt hard to manage.
Christenson said that increased levels of stress may be part of the larger shift at the university toward a more academically accomplished student body.
“It is more competitive to get accepted to the university than ever,” Christenson said. “That may be a variable in the increase in stress for students here. But it also may mean that we are attracting a more resilient student body.”
The university offers many options to help students cope with mental health concerns, Golden said.
A first stop for many stressed scholars may be Boynton’s Mental Health Clinic, which is staffed by a team of 24 psychiatrists, licensed psychologists and licensed independent clinical social workers. Services at the Mental Health Clinic include individual, couples, and group counseling and psychotherapy and medication management and assessment. Urgent mental health consultation and care is also available, as well as a 24-hour crisis line with optional texting services.
A new option that was created to help students cope with the stress of college life is a student-run program called de-stress. In this program, trained student volunteers offer free 45-minute counseling sessions designed to help students cope with common life stressors.
“We have about 25 of students who meet with other students one-on-one and talk to them about stress management,” Golden explained. Though the de-stress team are all volunteers, he added: “These jobs aren’t open to just anyone. A lot of people apply, we interview for the positions, and we only pick the very best candidates.”
The program, which was launched last year, has been popular. “Students can sign up online for sessions,” he said. “It is an opportunity for them to talk about their stress before it becomes unmanageable. We fill up all of our appointments.”
Another option is an online therapy program called SilverCloud. Students can turn to this automated program to get mental health assessments and treatment suggestions. “There are professionals behind the program, guiding the answers,” Christenson said.
And there is also the ever-popular PAWS (Pet Away Worry and Stress) program, where volunteers bring therapy animals to campus so students can experience the calming effect of interaction with animals.
“Not every resource is a perfect fit for everybody,” Christenson said. “But there are many, many good options available.”
The College Student Health Survey also found that U of M students reported a slight decrease in rates of binge drinking and an increase in marijuana use. Rates of tobacco use continue to decline among students.
“Alcohol remains a problem on campus,” Golden said. “We’ve got over a third of students that are still engaging in high-risk drinking. That’s a lot of students. The good news is that the rates are coming down rather than going up. That’s really positive.”
Added Christenson: “We’re happy that binge drinking is going down on campus, but we readily acknowledge that we still have work to be done in that area.”
Golden credits public-health campaigns with some of the decline in binge drinking at the university. He said that Boynton officials plan to continue — and beef up — existing efforts to cut drinking rates through public education and activism.
“We’re going to continue to do what we do now,” Golden said. “And we are going to do more. We want to reach even more students. They know the impact of alcohol abuse. They know the negative consequences. We’ve focused a lot of our efforts on some direct-education stuff. We’ve also done something with policy: There is no alcohol advertising allowed on campus. But we also need support from the community at large. This is something we are going to keep on working on.”
Rates of marijuana use on campus have gone up and down over the years, Christenson said. There is currently no active campaign at the university to address the effects of pot on academic performance, but there are plans in the works to educate students about the potentially negative side effects of the drug.
The survey found that U of M students are more likely to have used marijuana in the last 30 days than they are to have used tobacco. Many students believe that smoking pot use is less harmful than drinking alcohol.
“Marijuana use is a significant concern for us because it is not conducive to good studying,” Christenson said. “When used regularly, marijuana blunts motivation, which is contrary to the goals of student life. It’s our goal to help students have the best experience possible while they are at the university. We want them to understand that substance use can have a negative impact on their academic life.”
Kids these days. According to Patrick Dale, CEO of Headway Emotional Health Services, a Richfield-based provider of emotional health services for children, adults and families, the number of teens in need of mental health care is on the rise in Minnesota. And the number of programs that offer day-treatment services for them has shrunk.
“Young people are facing an increasing number of life stressors,” Dale said. The emotional fallout from those adverse childhood experiences manifests itself in a number of mental health issues: “At Headway, we see kids who are dealing with a wide range of issues that also affect adults, including depression, anxiety, ADHD and bipolar disorder. Kids and families need help, and they are willing to go to great lengths to get it.”
Headway, originally called Storefront Youth Action, and then The Storefront Group, was founded in 1970 by a group of suburban parents who wanted to help children and families in crisis in their communities. In its 40-year history, the program has grown to include a number of offerings. One central focus is adolescents; Headway’s Hopkins-based day-treatment program offers young people with mental health issues an opportunity to seek therapy while continuing to take high school classes.
This fall, in response to what they see as a growing need for adolescent mental health treatment, Headway expanded its offerings for teens when it opened a new day-treatment program in Brooklyn Center. The new program, like its sister location in Hopkins, will offer comprehensive mental health care and education for up to 40 children ages 12-18.
“The population is definitely there,” Dale said. “The response to this new program has been enthusiastic, and we’re excited to have another opportunity to help families.”
Just days before Headway’s Brooklyn Center branch opened, I met Dale at the Hopkins day-treatment program. He was excited to tell me about Headway’s mission and history.
MinnPost: You’re expanding Headway’s day-treatment programs for adolescents. Why?
Patrick Dale: The demand for services for kids in this age group has been growing over a four-or-five-year period. And in the last few years a few of the programs that work with teens have closed due to budget issues. Today, Headway is one of just two or three programs that work with kids in early adolescence through high school age. There just aren’t a lot of day-treatment options available in the state for kids ages 12-18.
The impact of these shortages has been seen at other programs, too. Take Prairie Care. They offer a hospital setting for kids aged 18 and younger. Before they opened in 2009, there was a lack of facilities offering that type of service. From Day One, Prairie Care’s utilization rate has been something like 99.6 percent. Fairview has also had an increase in demand. Kids are getting transported to different cities, different states to find secure psychiatric services: There is that level of demand at the crisis end.
MP: Is some of this increased demand for services due to an increasing comfort around talking about mental health?
PD: The perception of the need for this kind of treatment has certainly changed over the last five years. Children’s mental health has become a topic that people are more aware of and more willing to talk about. Parents and other adults are starting to look for treatment alternatives for kids who are struggling with mental health issues. We’re not ignoring things as much as we used to anymore.
But the increase in adolescents seeking mental health care may also have to do with changes in the adult population. The majority of adolescents experiencing mental health issues these days are mirroring what’s going on with adults.
It’s great that as a society we’re finally talking about mental illness. This increased awareness gives us a language to use to describe what is going on in people’s minds. When I was in school, kids who struggled were called “weird” or “dumb.” They were isolated in a special class.
MP: The news has been scary lately. Do concerns about terrorism and security impact the mental health of teens?
PD: I think there are challenges in the world that leave some kids feeling overwhelmed or lacking in the coping skills that they need to survive. Some kids can hear about the bad things that happen in the world, like incidents of terrorism where people get killed, and they’re resilient. They can say, “The likelihood of that coming to my neighborhood is low. I’ll move on.” But other kids become really concerned about what would they do if something like that happened in their world. They lose the ability to deal with it rationally.
In the ‘50s, during the Cold War, adults would say, “Those are evil people who live far away from us.” There was the threat that someday those bad people might come here and do something bad, but it was a more abstract threat. Some kids were scared, but there was a belief back then — whether it was realistic or not — that there were things you could do to prevent something bad from happening to you. Now the treat comes from inside. Cultivating that feeling of distance doesn’t always work anymore. Safety is something kids today take seriously.
MP: What symptoms do teens exhibit when they are experiencing a mental health crisis?
PD: These feelings take on many forms. They go by many names. But they tend to manifest themselves in an overall failure to adequately participate in life. A kid might become withdrawn, end relationships, find new friends, shut down or completely separate from others. They become less verbal, less social, they have a decrease in the amount of time they spend on the activities that they used to enjoy. Sometimes, they might go in the other direction and get hyperactive.
MP: What is the Headway model of day treatment?
PD: For us, education and therapy are tied inextricably together. There are day-treatment models where the kid goes to their regular school or an alternative learning center in the morning, and then buses from school to a separate program where they get therapeutic services in the afternoon or evening. At Headway, school and therapy are tied together with the intention that as kids address their mental health issues, they can also work on developing their academic skills.
MP: Are there teens whose mental illness is so severe that it is becomes impossible for them to go to school?
PD: In a perfect world, the answer to that would be “No.” It is age appropriate and essential for kids to be educated. But sometimes, in rare instances, there are times when mental- or physical-health issues interrupt a child’s ability to learn.
MP: Can you tell me more about your new Brooklyn Center program?
PD: It is a sister program, identical to the program we’re running in Hopkins. It serves kids of the same ages. We have the same education program, the same structure, the same schedule. We located in Brooklyn Center because we want to provide a resource in a part of Hennepin County where there are a limited number of options available for kids with mental illness.
Capacity in our Hopkins program is 40. They’ve been operating at 40-45 students for the last two years. The Brooklyn Center program is also designed for 40 students. The assumption was that we would start with enrollment in the low teens. Due to strong demand, we started in the low 20s. The need for the program and the choice of location seems to have borne out.
MP: What brought you to Headway?
PD: Some people might say that I’ve always been here! I’ve worked at Headway in one form or another for 30 years. That’s my whole career. I earned my bachelor’s degree in social work from the University of Wisconsin-Eau Claire, and then I did my internship at a chemical dependency program.
Because my family has an extensive history with chemical dependency, I always had an interest in working with adolescents and young adults in crisis. I was aware of a program known as Way 12. I knew about it because my brother had been a resident there when I was growing up. I began looking for work in the spring of my senior year in college and found out there was an opening there. I got the job. I graduated college on Saturday and started work on Monday. Way 12 was a program operated by Headway. I’ve been here my whole career.
I was lucky to find a place that shares my values. I’ve never felt the need to go someplace else for work. I have been lucky enough to be able to move up in the organization and become one of the voices that determine how we are going to treat people here — both employees and clients.
MP: What are your goals for the rest of your career?
PD: I want to work myself out of a job. In a perfect world, Headway will provide support and services that will help each client be able to move on and live their life to the highest level they can achieve. I think that in the majority of cases we are able to do that.
I have no plans to go anywhere else. I never felt like leaving was going to provide me any better opportunities than staying would. I’m proud of my decision to stay here. This job has met all of the goals I was hoping work would offer me.
There was a point in our history when once a person experienced an episode of psychosis they were considered damaged goods. Often heavily medicated, they were isolated from society, locked away in psychiatric institutions, or, at best, encouraged to quit work or school and stay at home.
Things aren’t that bad these days, but the current system of care in the United States for people with schizophrenia could use some improvement, said Piper Meyer-Kalos, Ph.D., executive director of the Minnesota Center for Chemical and Mental Health at the University of Minnesota.
For the past six years, Meyer-Kalos has been part of the psychosocial development team of the Recovery After Initial Schizophrenia Episode (RAISE) project, a federally funded study that investigated best practices for treating people after their first psychotic episode.
Recently, increasing emphasis has been placed on the promise of prompt treatment after first psychotic episode. The RAISE project, which focused on intensive treatment to help people with schizophrenia get back to normal life, recently published the results of their research in the American Journal of Psychiatry. The study found that lower doses of drugs, combined with intensive therapy and individual resiliency programs, produced better results over a two-year period than the treatment methods most commonly used in the United States.
Recently, I spoke with Meyer-Kalos. She told me about her research — and about her belief that people who have experienced psychosis can go on to live happy, productive lives.
MinnPost: You are part of a team that has recently published intriguing research focused on treatment methods for people who’ve experienced first-episode psychosis. Can you tell me more about your work?
Piper Meyer-Kalos: The project that I’ve been working on started in the United States in 2009. I’m part of a team headed by John Kane from the Feinstein Institute for Medical Research at Long Island Jewish Medical Center. Our research wrapped up in 2014 and we’ve been analyzing our results for about a year.
The research was focused on developing effective intensive treatment methods for people who have experienced first-episode psychosis. Across our borders in Canada and Europe they’ve been talking about the importance of this form of intensive treatment for first-episode psychosis for some time. In the U.S., we were a little behind, though some American programs have developed this form of treatment organically, popping up in cities around the U.S. This trial was an effort to establish best practices for this model of treatment.
Developing a new model of treatment for first-episode psychosis is important because what we are finding out is that the earlier that you address treatment for people who have experienced their first episode of psychosis the better their overall outcome can be. The earlier people are treated, the better the chance they have to change the trajectory of their illness and improve the quality of their lives.
MP: How does this intensive model of treatment work?
PMK: Our treatment model, which we call NAVIGATE, combines family education, individual therapy, supportive employment and education and medication therapy. It’s an intentional combination of these psychosocial rehabilitation models.
It’s a team-based approach. We believe that it’s really important that these therapies are used together. We think having all options available to the patient and then working together with the patient to maximize engagement is what works the best and gets the best outcomes.
If we address patient needs with a team-based approach, we can better address the patient’s immediate and ongoing needs and help them get on with their lives. After a psychotic episode, people want to get back to work and school and their friends and families. The hope is that this treatment will help them avoid having to go on disability and step away from life. We want to help change that trajectory so that they can more fully recover from psychosis.
MP: How is this approach different from the way psychosis is commonly treated in the United States?
PMK: In the U.S., the typical treatment model is that people who have had episodes of psychosis are offered several different types of treatment in separate locations. So they’ll see a prescriber to get their medication. Then they’ll see someone else for case management. Then maybe, if they’re lucky, they can participate in group therapy or individual therapy. But they usually have to go somewhere else to access that.
Because these treatment options are so spread out, people often have a hard time actually getting access to all the types of services they need to get better. Sometimes a person who might be just coming out of the hospital might get lined up with a prescriber, but the other services are much more inaccessible. Then it takes time to get all the services in place.
MP: So how was your trial designed?
PMK: It was a cluster-randomized trial that was offered at a number of community-based treatment centers in over 20 states across the U.S. that serve people with serious and persistent mental illness. We randomized our study by site, not by individual people at each site. Half of the sites in the study used the NAVIGATE approach to treatment. The other half used what we called “community care,” or the existing treatment that was available at that site. A total of 404 people were enrolled in the study.
There was a strict criterion for participation in the study. It had to be the subject’s first episode of psychosis. They also had to have less than six months of lifetime exposure to an antipsychotic medication. We wanted to work with people who had little exposure to medication treatment. We wanted to get them early on to see if we intervene at an early level can we make a bigger impact.
MP: How did your NAVIGATE teams work with patients?
PMK: The NAVIGATE teams consisted of a project director, a family education specialist, a prescriber — either a psychiatrist or a nurse practitioner — a supportive- employment specialist, and what we call a “resiliency specialist.”
When people came into the clinic, they were greeted by every member of the team. Then they got orientation about all the components of the program. After that, based on their needs, patients would see some team members more than others. It was a very flexible model. We focused on the things that the clients told us were most important in their lives. If a client wanted to go back to school and work, for instance, that was our main focus. The treatment was client-driven.
MP: Why was the team approach central to the NAVIGATE model?
PMK: The NAVIGATE team-centered approach really improves the quality of care and allows providers to focus on the individual. When we worked as a team, we were constantly looking at ways to collaborate and piggyback, ways to make the treatment program work best for the individual patient. We had weekly team meetings. In those meetings we would talk about ways we could support patients in their recovery. We also had treatment-team meetings in which the client, their family members and their team members met together so we could talk about new about ways to support the client in their treatment and healing.
MP: What were your study’s central findings?
PMK: We’ve only just begun to really dig into this data. The research that was published in the American Journal of Psychiatry included the major outcomes of our study. We found that people in the NAVIGATE program stayed in treatment longer. They had a greater percentage of time in work and school. Our most important outcome was that study participants reported greater improvement in their quality of life. They also had a lower number of symptoms than subjects treated in the traditional programs.
MP: How did you get interested in this kind of research?
PMK: My research and work has centered on developing psychosocial treatments for people with schizophrenia. I’ve done work in manualized treatments and developing trainings for providers.
I’ve always worked with people with multiple episodes of psychosis. It became really interesting to me when the opportunity presented itself to be part of this research. My colleague was able to become part of the group that was developing NAVIGATE, and he invited me to join him. I was really interested in emphasizing recovery and resiliency.
I’ve also done a lot of work in positive psychology and what that approach might do in the treatment and recovery of this population.
MP: What role do you think positive psychology can play in the treatment of schizophrenia?
PMK: Most of the research that is out there about schizophrenia has always focused on questions like, “How do we help people work with their deficits or the areas that they need to improve in their lives?” What I think is so interesting about positive psychology is that instead of focusing on deficits we talk about how we can enhance people’s existing positive qualities. Focusing on people’s positive qualities becomes just as important as remediating their deficits.
MP: Talk of “deficits” does seem like it carries a feeling of shame. Is that why some people avoid seeking treatment for mental illnesses like schizophrenia?
PMK: The stigma that still exists around metal illness places a lot of pressure on people who have been diagnosed with a major mental illness. They think, “If I am diagnosed with this mental illness, then I won’t be able to do X, Y and Z.” The self-protective impulse would be to say, “I must not have this mental illness, I must not seek help for it, because I can still do X, Y and Z.”
Eventually, with the right treatment, people with schizophrenia can come to a point where they realize, “This illness is something that I can manage and still continue to live my life. It’s part of who I am, but it doesn’t define who I am. It’s one piece that makes me who I am.” That response can be a result of this kind of treatment.