Hope for Tomorrow: Mental Health and Substance Abuse Education Evaluation in Utah — Part II
Outreach Partnership Program 2005 Annual Meeting
Sunday April 3, 2005
Michelle Moskos, Ph.D., MPH, Faculty Investigator
Intermountain Injury Control Research Center
Dr. Moskos began by describing the findings of the Utah Youth Suicide Study. Utah ranked at or above the 90th percentile among the states for suicide among people aged 10 to 19 years during the years 1989-1998. National statistics show that almost 90 percent of youth who die by suicide have a psychiatric diagnosis and only 5 to 20 percent are receiving mental health treatment at the time of their death. Comorbidity distinguishes those who die by suicide from those who survive suicide attempts. Completers frequently have a history of mood disorders, substance use disorders, and disruptive behavioral disorders.
The first phase of the Utah Youth Suicide Study entailed gathering records from the Utah Medical Examiner in which the recorded cause of death was suicide, for all youth between the ages of 13 and 21, between June 1996 and November 1998. Examination of the government records showed that suicide risk was associated with being male, white and living in Utah. Involvement with juvenile courts raised that risk exponentially, 5 to 32 times, depending on the number and nature of the individual’s offenses. In addition, many of the young people were not in school. To understand the circumstances that led to the suicide, it was essential to try to talk with each individual’s family and friends.
The original study included 151 youth. The second phase of the study included 49 young people (41 males and 8 females) with an average age of 18 years. All of the individuals except one were living with parents at the time of death. Seventy percent completed suicide in their parents’ home, and 74 percent used a firearm. In this second phase, Dr. Moskos and her colleagues identified the barriers to mental health treatment for these young people through interviews with parents, siblings, friends, family and others. The findings of the second phase established an evidence-based foundation for NAMI’s Hope for Tomorrow program. The overview of the psychological autopsies is currently in press in the journal Suicide and Life-Threatening Behavior.
The parents of each decedent were contacted by mail three months after the death, and then by telephone three to four months after the death. Those who agreed to be interviewed gave informed consent. The parents also identified additional people -siblings, other family members, teachers, coaches, friends, religious leaders — who had been in contact with that youth for two years prior to the death. All interviews were conducted by people trained in interviewing techniques. The parents were interviewed within seven months after the individual’s death, and the other contacts were interviewed within 9 to 11 months. Interviews were conducted with 268 persons (81 parents, 56 siblings, 27 other relatives, 71 friends, and 33 others). The questionnaire contained 70 items. People were asked to respond using only the information they had prior to the suicide.
The questionnaires yielded a rich picture of the experience of each individual and the group as a whole. Much of the information gathered was of particular relevance to the NAMI program. For example, only 74 percent of the parents agreed with the medical examiner that their child died by suicide, 8 percent said they thought the cause was an accident, 4 percent thought it was a homicide, 6 percent said they did not know and 4 percent had no opinion. These results speak to the power of stigma.
When parents were asked whether their child had received a psychiatric diagnosis that required treatment, 65 percent said yes. Mood disorders accounted for 37 percent, substance abuse 20 percent, schizophrenia 10 percent, bipolar disorder 10 percent, attention deficit hyperactivity disorder 8 percent, and obsessive compulsive disorder 4 percent. Some decedents had multiple disorders. Despite their diagnoses, none of the 49 youth in this study were receiving mental health treatment at the time of death. Although more than a quarter of the decedents had been prescribed medications, such as antidepressants and mood stabilizers, the medical examiner did not find therapeutic or even sub-therapeutic levels of psychoactive drugs in any of the individuals at autopsy. Recent autopsy studies of suicides in Utah have shown evidence of use of psychotropic drugs in some decedents, but the blood tests have also revealed use of illicit drugs such as cocaine and methamphetamine.
All of the interviewees were asked about the underlying cause of the suicide, emotional and behavioral problems, situational stressors such as a romantic breakup right before the death, substance abuse, and the history of ideation and/or attempt. One important finding was that friends do not know more than parents. The decedents talked with their parents about their suicidal ideation, and even their plans for suicide, including the time and method. Friends did know more about substance abuse.
The most important questions were about the mental health treatment that was sought for, and by, the decedent, and the barriers to mental health treatment for the decedent. Interviewers asked the question, “If problems had been identified in the area of depression or substance abuse or conduct disorder, what would have been the barriers to getting help?” Parents, friends, and siblings all agreed on the top five barriers, though in slightly different order: (1) the decedent believed that nothing could help; (2) the decedent believed that seeking help was a sign of weakness or failure; (3) the decedent was reluctant to admit having problems; (4) the decedent denied his or her problems; and (5) the decedent was too embarrassed to seek help. Parents who had sought treatment, as well as those who had not, cited the same top five barriers. Lack of insurance coverage and being unable to afford treatment were less significant barriers. Although some of the top five barriers cited imply that possibly the decedent felt hopeless, careful analysis of a separate question on hopelessness indicated that the barriers were more closely related to stigma.
The study concluded that the stigma associated with mental illness may be an additional risk factor for adolescent suicide, as it may preclude appropriate mental health treatment. It is essential to take the parents’ perspective into account, because it is the parents who must initiate treatment for their child. If the adolescent suicide rate is to be reduced, the stigma of mental illness and the stigma of seeking treatment must be addressed.
Merging the results of this peer-reviewed research and the Hope for Tomorrow program has been a natural process. Evaluation of Hope for Tomorrow has been an outgrowth of the partnership between Ds. Moskos and Ms. Cottrell. One of the first steps was to develop and revise materials to ensure consistency in all of the presentations.
The following outcome measures are tied to the program content: increasing knowledge, recognizing signs and symptoms, reducing stigma, and changing behavior (specifically help-seeking). It is important to emphasize that this is not a suicide prevention program. It is a program that addresses risk factors related to the stigma of mental illness and the stigma of seeking treatment. It is also critical to reiterate the importance of respecting and taking into consideration the perspective of parents.
As the program has matured it has changed. Now there are synergistic partnerships among government agencies, community organizations, local media, schools, and parents. Partnerships with university faculty across departments draw from expertise in program planning, implementation and evaluation, and connect research to local community practice. Partnerships have enabled the program to develop and organize with both academic and community support. Parents may not trust community based organizations that operate independently. The partnership provides a foundation for distributing reliable information that will not cause harm to any adolescents who participate. More importantly, university resources provide all education and evaluation materials at no cost to the schools. Support has come from a grant from the Primary Children’s Medical Center Foundation and from in-kind contributions of personnel time and materials duplication from Intermountain Injury Control Research Center in the Department of Pediatrics at the University of Utah.
Topics for the lunchtime forums, which have become increasingly popular, are developed in response to student suggestions and are scripted for the presenters. The bulletin boards, resource cards, and posters have been carefully designed and produced. Thousands of posters saying “Outside I’m okay and inside I’m not” have been distributed all over the community, often by kids who take them home or put them up in their favorite restaurants or other establishments.
Questions and Answers to Dr. Moskos and Ms. Cottrell
In response to a question about the recent experience of the pilot school that reported 12 suicides in 12 years, the speakers said that since the program had started, there had been no suicides. However, they cautioned against regarding that as an outcome of the program.
On the question of how to identify parents of suicide victims, the speakers advised going to support groups or yellow ribbon organizations in the state, as well as contacting the American Association of Suicidology.
A participant requested more discussion on the finding that stigma, rather than hopelessness, was the biggest barrier to getting help. Dr. Moskos responded that some of the peer reviewers of her study were skeptical about this finding, because it contradicted conclusions drawn by Dr. David Shaffer and Dr. David Brent from their psychological autopsies of youth suicides. Psychological autopsies use diagnostic instruments that measure hopelessness, but the Utah study did not attempt diagnoses. The relationship between hopelessness and barriers to getting help is complex one and has yet to be fully explored.
Another participant commented that lack of parental awareness that depression (and suicide risk) can happen in any family has emerged as a barrier. This is somewhat different from denial.
In response to a question about evaluation and follow-up, Dr. Moskos said that the program closely monitors the students and how the materials affect them.
A participant asked for advice on how to conduct mental health awareness programs, in the context of legal or policy restrictions that protect families from being questioned about their home life and about mental illness in the family. Specifically, the participant was ordered not to discuss the usefulness of medications in treating depression. Ms. Cottrell and Dr. Moskos advised focusing primarily on basic mental health education. Dr. Moskos acknowledged that many teachers and counselors are reluctant to talk about mental health or mental illness with students because those discussions might prompt student confidences, which, in turn, would lead to making a referral for help. Dr. Moskos advised using other education and awareness tools and resources to help such students.
Disclaimer
* This document is intended to summarize a speaker presentation at the NIMH Outreach Partnership Program’s Annual Meeting and is not an official statement or opinion of the NIMH. This information is in the public domain and may be used or reproduced for educational purposes without additional permission from the NIMH.
