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Indiana
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Indiana
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Current Research Projects
BACKGROUND SHEET FOR THE INDIANAPOLIS NETWORK MENTAL HEALTH STUDY
How
we got here: In the mid-1970s, the United States, as a nation, made the
decision to change the way we provide medical treatment for people with
severe and chronic mental illnesses. Before that time, people with
severe mental problems were treated, for the most part, in large state
asylums with little promise of ever returning to the community. In part
as a response to the sometimes shocking conditions in these
"warehouses" and to the discovery of "psychotropic
drugs" which promised to control the behavior problems of these
individuals, the Community Mental Health Movement was born and was
successful in developing a new approach to treat these individuals. The
idea was that with these new drugs and the building of Community Mental
Health Centers (or CMHCs), the major symptoms of these illnesses could
be controlled through regular visits to the CMHC and people with these
mental illnesses could live and function fairly well in the community.
In essence, then, the locus for treatment was shifted from the hospital
and the asylum to the out-patient clinic and the community.
Unfortunately, almost a quarter of a century later, the promise of the
Community Mental Health Movement has not been fulfilled. Despite the
tremendous growth of knowledge on how the brain works, we still have not
"unlocked" the biological and genetic causes of mental
illness. What we find, instead, is that we know very little about what
happens to people with severe and chronic mental illnesses in the
community. This is a result, in part, of priorities by scientific and
government agencies to concentrate their effort (and resources) on
genetic and biological studies at the expense of studies which focused
more on the social aspects of care. Most studies over the last 25 years
examined the patient in the clinic, rarely following the in the
community to see how they are doing and how their illness affects their
lives and the lives of those around them.
In the last few years, there has been a recognition of the social
problems of the chronically mentally ill. In part, the plight of the
homeless (1/3 of whom are estimate to suffer from some form of mental
illness) in the United States has brought our attention to the failure
of the
current system to address the problems that people with mental illnesses
face. Under the leadership of Dr. Lewis Judd, the National Institute of
Mental Health (NIMH, the major source of research funds on mental
illness) has asked for social scientists to provide a better understanding of the burdens of the mentally ill and those who care for
them in the community. This study is part of that effort. The project is
funded under new programs in the NIMH to understand the lives of the
severely and chronically mentally ill from a social science perspective.
Sponsors
and General Purpose. This
study is being funded by the National Institute of Mental Health. It is
being carried out in part by NORC, University of Chicago. The data that
are gathered during this study will be used for scholarly analysis and,
hopefully, be used to inform social policy regarding the mentally ill in
the United States. All information collected is strictly confidential
and in no reports of the study will anyone be mentioned by name.
Sociological analysis is interested in the experiences of groups of
people and how their place in society influences their lives. It is
important that you understand this approach and that you convey this to
the people that you interview.
What
the study attempts to do: This
study tries to understand when and why individuals with severe emotional
problems come for medical treatment (utilization), whether or not they
take the medications that are prescribed for them and keep their
therapeutic appointments (compliance) and whether or not they get
better, worse or stay the same over time (outcome). Traditionally,
studies have attempted to understand these things by looking only at the
individuals themselves and at the social characteristics (sex, age,
race, social class) of the people with mental illness. This study goes
beyond this traditional approach in three ways. First, the theory that
guides the study suggests that it is not the individual's
characteristics that are important but the advice and influence of
people in the community with whom they have contact that influences when
and if they come for care, whether they take their "meds" and
whether they get better. In other words, understanding the individual's
social networks is
the key to understanding what happens to the mentally ill in the
community. That means that we not only will ask individuals about who
they talk to and see but we will also talk to key individuals who are
their supports in the community. Second, the study follows individuals
with mental illnesses into the community rather than just seeing them in
the clinics and hospitals. We will check in with both the individuals
with mental illness (called the "focal respondent" in this
study) and their supporters in the community (called the "network
respondent" in this study) at three different times over a year and
a half period. Third, we
argue that is not only the support (or lack of support) that individuals
find among their friends and family in the community but the networks of
support that they find in the clinic and in the city. This means that
the study will focus
on three levels - the community (which is what you will be
handling for us), the treatments centers themselves, and the
organizations and agencies in the community that are supposed to provide
additional help for these people whose illness means that they have a
wide range of needs (e.g., the local missions and soup kitchens, the
state housing agencies and programs). Why is following them and their social networks over time important? Before I go on to describe how we will actually do the study and how we will select respondents, I'd like to say a little bit more about the need for a longitudinal (that is, over time) study and about the idea of social networks that guides the study. Here some of the things we do know and some of the things we don't know will be discussed. One of the things that we do
know is that people with serious mental illnesses are likely to be
concentrated in the lower socio-economic classes in American society.
There are two competing ideas of how this happens.
*Low class life results from
mental illness. That is, people with serious mental illnesses were doing
well to start but, because of their mental illness, have
become downwardly mobile (that is ended up in the lower classes from higher ones). This is called the social selection hypothesis.
*Lower class life causes mental
illness. That is, there is something about the stresses in lower class
life that set
people up to develop mental illness more often. This is called the
social causation hypothesis. Only
following people with severe mental illness from an early a point as we
can will allow us to untangle which of these explanations is useful in
understanding the lives of the mentally ill.
With regard to social
networks, what we know already is that individuals with severe and chronic
mental illness do not have many positive supports in the community. And,
most scientists agree that this is not only a problem for those with the
illness but also for the few people who are left with the burden of
caring for them. What we don't know is when and why they end up with so
few people to depend on. There are three possibilities:
*These people never had many family members or friends to start with and
this lack of support may have resulted in individuals with mental illnesses coming for medical care only after
their problem has become very severe.
*These people had "normal" social networks but once their
mental illnesses started (and particularly once others understood how severe and continuing the problem is), some of their
social supports shy away from them while others are just worn away from the intense and difficult
interaction that may occur with the patients. Here the idea is that person with mental illness is the passive recipient of the actions
of those around him or her.
*These people decide (consciously or not) to actively change their
social networks. This is certainly the newest idea. There are some suggestions in some studies that people
with severe mental illnesses find lots of social interaction difficult to deal with. There is also a hint that these
people decide to replace their friends with others "like them". That is, they may prefer to have social
interaction with people who understand their problem, with people who they don't have to explain their problem to
or with people who don't find the side effects of their drugs "strange" or "scary".
The
only way we can find out which of these is operating is to follow
individuals as early as possible, tracing changes in their social
networks. And, knowing which of these matches what happens is important
for developing programs to help these people. For example, a community
sponsored program to provide supports for people with severe mental
illness would be organized very differently depending on which of these
seem to be the case. If the first is correct, the program would have to
address how to provide new supports for individuals; if the second is
correct, the focus would be on trying to relieve some of the stigma of
mental illness and some of the
feelings of burden that the caretakers feel; if the third is correct,
the program should try to figure out ways to build new opportunities for
social networks with others who have similar problems. In this study, we
hope to being to unravel this questions among many others.
How
will we do the study? First,
we need to find a group of people with severe mental illnesses to talk
to and follow into the community. While we would like to
"catch" them earlier in the development of their emotional
problem, the only practical way to do this, is to start with their first
visit to a treatment center. We have gotten permission and help from the
two largest hospitals in Indianapolis (the IU Medical Center and
Methodist Hospital) to recruit "focal respondents" from among
those that come for care to the two biggest public and private
facilities in the city. (It is important that you not talk about which
hospitals and which focal respondents we are studying since this
information is considered confidential.) Starting November 1, we begin
selecting focal respondents who fit the following criteria: *
This was their first contact with either Wishard (in particular, the
Crisis Intervention Unit of the Midtown Mental Health Community Mental
Health Center) or Methodist. This does not mean that this is their first
episode of mental illness; rather, this is the first time they enter
into the system at these points (while a first episode would be
preferable, new cases of severe mental illness do not occur at a rate
that would make this study feasible). *They
have a "research diagnosis" of severe mental illness (SMI).
This means two things. First, they meet the criteria for SMI using a
well-developed tool for determining their diagnosis (the SCID, an
interview instrument developed by the people at the New York State
Psychiatric Institute). Second, the categories of mental illness that we
will focus on are major
depression (people
who have persistent and severe bouts of low mood), bipolar
depression (used
to be called manic depression; people who have persistent and severe
bouts of both very low mood and very high or excited mood), schizophrenia
(people
who have a set of characteristics for a least six months including loss
of emotion, distortions in thought content, delusions or
hallucinations); schizo-affective
disorder (people
who have persistent and severe characteristics of both schizophrenia and
depression); and schizophreniform disorder (people who have exactly the same symptoms of schizophrenia
but who have had these symptoms for less that six months).
* They have not had been in treatment for their problem for more than
two years while living in Indianapolis. Sometimes people who have had a mental illness for a long time may
decide to try a new place for care (switching treatment programs and hospitals). We cannot trace the how people's
social networks influence their decision to start care or how they have changed since they became ill if this
happened a long time ago.
*They currently live in the Indianapolis area. Sometimes people with
problems find their way to Indianapolis and seek treatment (or are brought in by others, like the police) in the city.
Further, Methodist is considered a state resource. It is not possible for practical reasons to follow these people and their
network ties in the place where they live. It is just too costly to travel often to various parts f the state.
Once
we find focal respondents with these characteristics and get their
permission to participate in the study, we will interview them. These interviews of the focal respondents will be
done the staff of the project - Bernice Pescosolido, Eric
Wright and Anne Figert. Bernice Pescosolido is the Principal
Investigator of the project and Professor of Sociology at Indiana
University in Bloomington. She was trained as a Medical Sociologist at
Yale University and received her Ph.D. in 1981. She came to Indiana
University in 1981. She has published a number of articles on medical
care and social influences in health and illness including suicide and
mental illness. Eric Wright is an advanced graduate student in the
Department of Sociology at Indiana University. He arrived at Indiana
University from the West Coast about six years ago. His interest focus
on how men and women provide different amounts and types of help to
others who face difficult problems, including mental illness. He will be
writing his dissertation from the information collected in this project.
Anne Figert is also an advanced graduate student in the Department of
Sociology at Indiana University. She also came to Indiana University
about six years ago but from
Texas. She is currently writing her dissertation on how and why the
Pre-menstrual Syndrome (PMS) became seen as a "mental"
problem by the scientists who produced the manual that guides
psychiatric diagnosis. The three staff members have been involved in
pre-testing all of the interview instruments in both of the sites
where the study will actually take place and by talking to staff,
individuals with mental illness and some of the friends and family
members that accompanied the patients.
Where
do you come In? One
of the things we will ask
the focal respondents is to tell us about the people who are most
important in their lives - these are not only the
people they see as most helpful but also the people they see as causing
them the most problems (e.g., people who nag them about their
medication). From the names that they give us, we will select the four
that seem to be the most central. At that point, we will send Wanda
Mallison a list of the names, addresses and telephone numbers for these
people. She will contact one of you for each focal respondent and you will
be
assigned to interview these network respondents. We hope to match the
information from the network respondents to those of focal respondents
so we would like to have the information from the network respondents
collected within a month of the initial interview of the focal
respondent.
What
will you be asking them about? One
of the things that we want to know is whether the mentally ill person is
as central to the life of the network respondent as the mentally ill
person has indicated for themselves. So, the first part of the interview
will
not deal with the mentally ill person at all. Rather, you will be asking
them about all aspects of their own lives - their
household, their work situation, their leisure activities, their family
and relatives, to name a few. In each of these areas, you will be asking
them some basic information so we can understand their social situation
and, in each, you will also be asking them to name all of their network
contacts (that is, people they talk to or talk to them routinely in
their lives). The second part of the interview will focus on the
menially ill person who named them as a key network contact. You will ask
them to tell their story
of what happened to the focal respondent in their own words (which will be
the only part of the interview that will be
tape recorded). You will also be asking them about
who they perceive are the supports and "hasslers" of the focal
respondent. The rest of the interview focuses on the medical care
system. their experiences with it and their attitudes and beliefs about it.
Project Overview CENTRAL
STATE HOSPITAL TRACKING SERVICE AND
RESEARCH PROJECT
John McGrew, Ph.D., Principal Investigator A
multi-disciplinary team of researchers from Indiana University,
Indiana University-Purdue University at Indianapolis (IUPUI), and Ball
State University--with representatives from Central State Hospital,
the Division of Mental Health, and consumer groups--is conducting a
multifaceted project focused on assessing the impact of closing
Central State Hospital. The
program has two main components: 1) a tracking service for the Division of Mental Health, and 2)
an in-depth research study of the impact of the closing on the
patients, their families, and the employees. Tracking
Service. The research and advisory teams have developed and implemented
procedures for tracking the location and service status of clients
discharged from the hospital for the Division of Mental Health. This service focuses on all patients discharged from the
hospital since March 23, 1992. Data
are collected regularly from the six mental health centers in the
Central State Hospital district and supplemented with information from
the client and other community sources as required. The Tracking Service also gathers information on a regular
basis about discharged patients such as current health problems,
medication use, legal contacts, and days spent in inpatient
facilities. The research
team has also expanded the database, maintained by DMH personnel, to
monitor in greater detail the costs, special needs, and problems that
arise as clients are moved into the community. Research
Study. In addition to the tracking service, the research team is also
continuing to study the impact of closing Central State Hospital
through a series of in-depth interviews with the clients, their
families, the workers, and the community. The baseline data were gathered from several sources.
Chart
Reviews. A detailed chart review was conducted in order to collect basic
demographic and clinical information on all clients in the hospital in
March, 1993. Interviews
with the Clients. Each client living at the hospital was invited to participate
in a series of confidential, face-to-face interviews prior to being
discharge. In these
interview, clients were asked about a number of areas, including:
opinions and reactions to the decision to close the hospital,
overall quality of life, satisfaction and use of hospital and social
services, the number and types of personal relationships to others in
the hospital and in the community, and various risk behavior. Annual follow-up interviews are underway with the patients who
completed baseline interviews to provide regular information on how
they are doing as they make the adjustment to community-based care. Interviews
with Family or Community Members. With the client's permission, similar, confidential, face-to-face
interviews are also conducted with one or more of the client's community
caregivers after the client's
first follow-up interview. Interviewers
are collecting information on family's
reactions and expectations regarding the closing of CSH, the feelings
and responsibilities they experience because of the focal client's
illness, and their perceptions of the client's overall quality of life.
Annual follow-up interviewers are also planned to assess how
their attitudes and experiences change over the next few years. Interviews
with Hospital Workers. In the final few months prior to CSH closing, in-depth interviews
were also conducted with a number of hospital employees to better
understand the practical dimensions of the closure process, how the
organizational and work environment had changed during the final year,
and how they felt about the decision to close the hospital. Interviewers also were asked a number of questions regarding the
personal impact the closing of the hospital was having on their health
and mental health and the social support resources they had available to
cope with the stress. Finally,
these employees were asked about their plans for the future. Annual follow-up interviews are also underway to study what
happens to this affected group as well. The
outcome of this comprehensive and multifaceted study will contribute to
the national and state debates on the impact of deinstitutionalization
of people with severe and persistent mental illness. Consistent
with the professional and ethical regulations governing academic
research, the information collected as part of the research study will
be held in strict confidence and known exclusively to the principal
investigators and project staff. No
reference will ever be made regarding the identity of any
respondent, verbally or in writing. The results of this study will be presented to the community,
government personnel, and other interested parties solely in ways which
guarantee the anonymity of all study participants. For more information, please contact: Project Overview Pressing Issues in Health and Medical Care - Mental Health Module to the 1998 GSS Mental Health: A Report of the Surgeon General issues a call for research to "confront the attitudes, fear, misunderstanding that remain as barriers" to the effective and appropriate treatment of mental illness (Satcher 1999, Preface). The "most formidable obstacle to future progress in the arena of mental illness and health" cited in that Report is stigma (p.3). While stigma includes "bias, distrust stereotyping, fear, embarrassment, anger and/pr avoidance" (p.6), it embraces both attitudes and behaviors toward persons with mental illness and the system of treatment. This report focuses on two of the most critical aspects of the public reaction to mental illness - the assessment of the efficacy of psychiatric medications, and the willingness to use them for one's own problems. Both public attitudes toward the generic category of psychiatric medications and the specific, highly publicized SSRI, Prozac, form the target of the data and analyses presented here. The data for this report come from the 1998 General Social Survey, a nationally representative face-to-face survey of Americans conducted by the National Opinion Research Center (NORC) at the University of Chicago. On one of the two national samples conducted in 1998, a 72 item module, Pressing Issues in Health and Medical Care, included questions on psychiatric medications and Prozac as described above. The major findings of this research are as follows:
Project Overview The Dawn Project, established in 1997, provides coordinated, community-based systems of care to children/youth with serious emotional and behavioral challenges. In 1999, Marion County was awarded a grant by the Center for Mental Health Services (CMHS) of the Substance Abuse and Mental Health Services Administration to expand the Dawn Project. Funded for five years, the grant supports a comprehensive evaluation of the Dawn Project model. The Dawn Project Evaluation Study was developed by an interdisciplinary team of researchers, practitioners, and family members in an effort to assess the effectiveness of the Dawn Project in improving the outcomes of the families serviced. The evaluation focuses on six major topics: profiling and tracking the outcomes of Dawn Project participants; service use patterns; service coordination team dynamics, system-level functioning, effectiveness, and Families Reaching for Rainbows Advocacy Organization. The evaluation work began in November 2000. A major programmatic objective of the Dawn Project is to insure that enrolled youth and their families have access to the most comprehensive and clinically appropriate array of services possible. Children with serious emotional disorders (SED) often have multiple needs which cut across traditional services systems, and historically the integration of services across different systems has been a major challenge with the most comprehensive array of services possible. As part of the Dawn Project Evaluation Study (DPES), the research team is examining the services provided to individual youth and their families in order to better understand the unique and common services needed and provided. Completed Research Projects PROJECT SUMMARY: INDIANA YOUTH ACCESS PROJECT (IYAP)The Indiana Youth Access Project (IYAP) was designed to increase access to health and social support services for under-served gay, lesbian, and bisexual adolescents who are already HIV-infected or at increased risk for HIV infection. It is sponsored by the Indiana State Department of Health as a Special Project of National Significance (SPNS) through a grant from the Health Resources and Services Administration (HRSA) through the Ryan White CARE Act of 1990. The service model combines a mentored, peer-group empowerment program with an array of gay-positive HIV-risk targeted health, mental health, and social services for high risk gay, lesbian, and bisexual youth.The model builds upon the work of an established agency (the Indiana Youth Group, Inc.; hereafter, IYG experienced in working with peer-groups and the target population. It expands the existing IYG HIV risk reduction efforts to incorporate: (1) systematic HIV risk assessments which include HIV testing and health and mental health evaluations, (2) targeted peer outreach services, and (3) youth-focused case management and referral services. A central premise of the model is that much of the observed risk among these youth is the result of the combination of unaddressed health, mental health, and social problems with negative or inadequate peer support. Service demonstration projects have shown that peers can effectively educate other youth about HIV/AIDS, alter attitudes about unsafe behaviors, and reinforce safer behavior patterns.However, the youth at highest risk for HIV are also more likely to be surrounded by disorganized, poorly informed, or unsupportive peer and family networks. Under the IYAP, each youth's entry into the program is facilitated and reinforced by other youth. The emphasis on the IYG peer group provides an alternative social circle for youth to make friends and develop a sense of belonging. IYAP staff, in addition to providing a variety of individualized professional services, directly and in-directly intervene in the peer group process. Many of the program activities, for example, are targeted HIV prevention efforts designed to address HIV risk directly--for example, teaching youth about HIV/AIDS, how to talk about HIV with a new date, how to resisting negative peer pressure, and how to developing a positive peer support system. Other efforts are more indirect and target the major co-factors of HIV risk such as homelessness, severe mental health and health problems, the use of drugs or alcohol, and poor job skills or unemployment. The overall aim of program staff is to empower and motivate youth to take action to protect themselves from HIV. Three specific outcomes are held as program objectives: 1) increased HIV knowledge, 2) fewer HIV risk behaviors, and 3) increased utilization of preventive health and social services. As youth mature in the program, they are encouraged to demonstrate and reinforce their empowerment by becoming a peer counselor and reaching out to and mentoring incoming youth. In addition to developing this innovative service model, a rigorous evaluation of the program is also being conducted as part of the IYAP. The research program reflects a modified panel study or repeated measures design and involves two major data collection efforts. Service data are collected using service record forms which staff use to report the date, time, type, and amount of service provided and any referrals made for each client. In addition to these service data, annual face-to-face interviews are conducted with each youth enrolled in the program. In the these interviewers, youth's are asked about a number of key outcomes, including their knowledge of HIV, the frequency they engage in various risk behaviors, the number of actions they have taken to prevent their getting HIV, and the frequency they have used various preventive health and social services at IYG and elsewhere in the area. In addition, the youth are asked to provide information about their social networks. Together these data are used to model quantitatively the structure and functioning of the peer-group being created through the IYAP program and to exploring how the various dimensions of the network and services provided impact particular outcomes. Because a number of the youth with continue their involvement over the three years of the program, we will be able to examine the effects of the intervention overtime on a sub-sample of the clients. Unfortunately, because of the limited size of the target population in the area, we lack the capacity to construct a "true" control group for this research. Our research protocol focuses the variation in the sample on the key independent variable (e.g., the extensiveness and nature of each youth's involvement in the program activities and their ties into the IYAP peer-network) to make statistical generalizations about the effect of that variable. To insure that there will be sufficient variance in the data to address our hypotheses, our annual outcome survey will focus on all enrolled participants in the program (approximately 300). The research was guided by a conceptual model of the program's effect (see Figure 1). The model suggests that for some youth, there will be a direct effect of simply being in the program -- i.e., there is a direct independent effect of simply having access to information and services. For the majority of the youth, however, the principal impact of the program will be through youths-peer networks and their personal feelings of empowerment. Specifically, it is hypothesized that positive peer support for HIV prevention is a key intervening variable which explains both differences in youths' HIV risk behavior patterns and in their utilization rates of primary prevention services. That is, when at-risk gay, lesbian, and bisexual youth are connected to a network of similarly situated young people who support each others' preventive behavior patterns, risk for HIV infection will be minimized and the use of and compliance with other relevant social and health services will increase. Over time, the model also proposes that more extensive involvement and integration into the program will result in a reorganization of the youth's peer network to include more individuals supportive of HIV prevention. In addition, to evaluating the IYAP service model, the evaluation design will also provide an opportunity to develop a better understanding of why peer models are more effective. To date, research on peer services has been extremely limited, focusing mainly on the psychological dimensions which affect how preventive information is received or what motivates individuals to take precautions. By applying social network analytic techniques to examine the structure and dynamics of the IYG peer network, this study will also contribute to a better general scientific understanding of peer influence on health behavior. The project and associated research was conducted from December 1993 through December 1998. For further information on the project and the findings from the evaluation, see: Eric
R. Wright, Christopher Gonalez, Jeffrey N Werner, Steven Thad Laughner,
and Michael Wallace. 1998.
“The Indiana Youth Access Project:
A Model for Responding to the HIV Risk Behaviors of Gay, Lesbian,
and Bisexual Youth in the Heartland.”
Journal of Adolescent Health 23(2S):83-95. Eric
R. Wright, J. Dale Dye, Michelle E. Jiles, and Melissa K. Marcello.
1999. Empowering
Gay, Lesbian, and Bisexual Youth: Findings from the Indiana Youth Access
Project. Final Evaluation
Report. Indianapolis, IN:
Department of Sociology, Indiana University Purdue University
Indianapolis.
Introduction and purpose: Problems in Modern Living - Mental Health Module to the 1996 GSS The Public's attitudes toward those with mental health problems comprise the larger social context in which individuals and their families experience these problems. This social and cultural atmosphere sets the tone for public reaction to persons with mental health problems and toward proposed policy initiatives to assist them. The classic studies of Americans' knowledge of and attitudes toward persons with mental illness and substance abuse problems began in the 1950's with Shirley Star's first national survey and was continued, in spirit, in the two large national studies, Americans View their Mental Health (1957, 1976). Since that time much has changed in terms of scitific study, treatment, and policy. Until now, the question remained about the impact of these important changes on the attitudes, beliefs and opinions of the American people. This report is based on papers (listed in Appendix XI) that have emerged from the MacArthur Mental Health Module of the 1996 General Social Survey and on supplementary analyses conducted specifically for this report. The papers and this report provide answers to basic questions about where the public stands. In particular, this report addresses the following questions: What are the public's beliefs about the underlying causes of these problems? How much have they come to adopt medical explanations? Does the public hold onto beliefs about the roles of child rearing, character flaws and divine intervention? How do Americans assess the competence of persons with mental health problems? Their dangerousness? How willing are Americans to have day-to-day interactions with persons with mental health problems at home? On the job? In their neighborhood? What does the American public think are appropriate actions that persons with mental illness or substance abuse problems should take? How willing are they to allow the use of legal means to force treatment? Who does the American public believe to be responsible for the cost of care in these cases? The person? The family? Insurance? Charity? The government? How knowledgeable are Americans about mental illness and substance abuse problems? Can they recognize these problems? What do they think about the benefits of treatment?
PROJECT
OVERVIEW In
Apri12001,Governor Frank O'Bannon announced a new initiative to improve
health, mental health, and social services and support for persons with
developmental disabilities and/ or mental illness. Specifically, he
directed the Indiana Family and Social Services Administration (FSSA) to
begin restructuring existing services in the southeast region of the
state in order to improve the quality of care and move more clients into
the community while reducing the cost of providing care to these
Hoosiers. The reconfiguration would involve three major changes: the
closing of Muscatatuck State Development Center (MSDC), the downsizing
of Madison State Hospital (MSH), and the development of the new
Southeast Regional Care Center which will have a base of operation on
the grounds of Madison State Hospital. As part of this major policy
initiative, FSSA has asked an independent group of external researchers
at Indiana University to conduct a comprehensive, multidisciplinary
evaluation and research study in order to monitor and report on both the
process and the outcomes of this initiative. Research Team
Eric R. Wright, Ph.D.,
David
Mank, Ph.D.,
John
McGrew, Ph.D.,
Debra
Mesch, Ph.D.,
Faith
Thomas, M.A.,
Terry
F. White, M.B.A., Because
of the complexity and scope of this initiative, the evaluation protocol
is multifaceted and comprehensive. The specific protocols are being
developed by members of the evaluation team with input from governmental
policy makers and other community members. While the research team is
actively seeking input from interested parties and stakeholders
regarding the major research questions and study design, the execution
of the protocol is the sole responsibility of the research team. All
data will be collected and analyzed by the research team and their staff
according to the highest scientific standards. The research team will
summarize key findings as data become available in accordance with
scientific standards governing evaluation research. Written and verbal
reports will be offered periodically to the State, other stakeholders,
and the public. The following paragraphs provide a brief overview of the
major components of the evaluation study, the specific research
questions guiding each component of the research project, and how the
data will be collected. Consumer Transition Tracking Service . The Research Team is tracking the location and service status of all consumers affected by these decisions (including those discharged from MSDC and those downsized from MSH). This service will focus on all consumers officially enrolled at the two facilities as of May 1, 2001. Data are being collected regularly from the primary case managers of the affected clients via a short written report form and supplemented with information from the client and other community sources as required. The Tracking Service gathers information on a regular basis on the consumers' current health status, overall level of functioning, legal contacts, and re-institutionalization. The purpose of this project is to provide basic descriptive data on the physical location of clients, whether or not they are receiving services, if they have gotten into trouble with the law or been re- institutionalization, and whether or not they are still alive (and, if not, what was the cause of death). Worker Transition Tracking Project. In addition to knowing what happened to the consumers, the research team is also initiating a parallel tracking project to determine and monitor what happens to workers affected by the decision. This study will distribute written questionnaires to staff at MSDC and MSH at several intervals before, during, and after the restructuring. The purpose of this study is to document what happens to the workers, if they are successful in finding other employment, whether they remain employed in the human services sector, and what personal, economic, social, and psychological toll the policy has on their lives.
Consumer Outcomes Study. Each consumer living at MSDC or MSH will be invited to
participate in a confidential, face-to-face interview prior to being
moved into the community and/or the creation of the Southeast Regional
Center (SERC). Each consumer will be compensated for his or her
participation. During the interview, consumers will be asked about a
number of areas, including their: opinions and reactions to the policy
change, overall quality of life, satisfaction and use of hospital and
social services, the number and types of personal relationships to
others in the hospital and in the community, and various risk behaviors.
Follow-up interviews will be conducted with each consumer who completes
a baseline interview annually following the creation of the SERC. The
purpose of this component is to be able to describe, from the consumers'
points of view, how they feel about the transition and document how they
experience and fare through the transition process. We are also
interested in evaluating the extent that consumers who are moved into
the community actually become integrated into the community. Family
Outcomes Study. In addition to interviewing the consumers, the Research
Team will also conduct parallel interviews with the primary caregivers
of each of the consumers at MSDC and MSH involved in the restructuring
process. Like the consumer interviews, these will involve confidential,
face-to-face interviews conducted by trained professional interviewers.
Interviewers will ask family members questions about their demographic
and social characteristics, their reactions and expectations related to
the policy initiative, their feelings and responsibilities with regard
to the primary consumer, and their perceptions of the primary consumer's
health status, functioning, and overall quality of life. The major focus
of this component is on evaluating the economic, psychological and
social impact of policy change on the family caregivers and determining
if there is a "spillover" of responsibility from the state to
the affected family members.
Services and Costs Study. A major objective behind this initiative is the State's
twin goals of improving services and reducing the costs of providing
services. The research team will be collecting detailed data on the
services provided and the costs of those services for all of the
affected consumers over the course of the transition process. The
purpose of this project is to be able to describe the array of services
being provided to the consumers and estimate the cost savings or
increases associated with providing care to this specific group of
consumers.
SERC Reconfiguration Study. The end result of this initiative will be the
creation of the SERC. Because this will involve a major reconfiguration
of MSH and possibly the integration of many new services and staff, the
Research Team will also study this restructuring process. Research has
shown that the process or restructuring can itself have important
effects on the care provided in human service agencies. Consequently,
the major focus of this component will be on describing the
restructuring process over time and how this process impacts the
consumers who receive services through the new SERC. Additionally, the
study will examine how the policy decisions affect worker attitudes of
satisfaction, organizational commitment, and perceptions of fairness
throughout the restructuring process.
Public
Policy Process Study. This component of the study will focus attention
on the policy process over the course of the transition process. Major
policy changes, such as this one, offer researchers opportunities to
better understand the broader policy process and the context within
which various decisions are made. This study will involve the review of
historical documents and periodic open-ended interviews with policy
makers, consumer and family advocates, and other key stakeholders. The
major focus of this research is on cultivating a better historical
understanding of what policy-maker and process related factors were
involved in shaping the direction and outcomes of the policy decision.
This particular study will not be used to evaluate the outcomes of the
decision, rather it will be used to identify insights into the process
itself which may be used to improve the process of implementing future
policy changes. Commitment to Conducting Ethical Research
Consistent
with the professional and ethical regulations governing academic
research, the information collected as part of this project will be held
in strict confidence and known exclusively to the principal
investigators and project staff. No reference will ever be made
regarding the identification of any respondent, verbally or in writing.
The results of this study will be presented to the community, government
personnel, professional audiences, and other interested parties solely
in ways that guarantee the anonymity of all study participants. The
outcome of this research will contribute to the national and state
debates on the quality of life and services for people with severe and
persistent mental illness. For
more information, contact:
Terry F. White
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1022 E. Third Street, Bloomington, IN 47405 Tel: (812) 855-3841 Fax: (812)856-5713
Last updated: 15 November 2004 |
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Research
Portfolio Includes: