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Blamed and Ashamed: The Treatment Experiences of Youth With Co-occurring Substance Abuse and Mental Health Disorders and Their Families

How the Study Was Conducted

The study included a series of activities aimed at: (1) improving the understanding of the needs of youth with co-occurring mental health and substance abuse disorders and their families; and (2) providing policy makers and service providers with better information on how to respond to the needs of these youth and their families.

Participants

Between 1997 and 1999, over 150 people from California, Georgia, Illinois, Kansas, Maine, New Mexico, Virginia, West Virginia, and the Washington, DC, area were interviewed or participated in focus groups. They represent a cross-section of youth with co-occurring mental health and substance abuse problems and their families. Youth participating were from every ethnic group and socio-economic status and ranged in age from 13 to 28. They all shared the experience of having resided in both mental health and substance abuse treatment facilities. Focus groups for youth and parents were held separately.

Formulating The Questions

The team of youth researchers began with a series of interstate conference calls to design the study process and develop questions. Dr. Melissa Nolte, an independent evaluator and qualitative researcher whose specialty is participatory evaluation, worked with the youth researchers. Six conference calls were held with 10 youth and 6 adults to decide how to do the study, what to ask, and how to ask the questions. Questions were phrased differently for youth and for their parents in order to capture their different perspectives. Yet, the questions for both groups addressed the same broad areas of experience and explored the same three themes.

• What really worked to help you?
• How were your (or your child's) substance abuse and/or mental health issues addressed in the different treatment centers?
• What would you change?

Once the questions were developed, pilot focus groups were held under the supervision of Dr. Nolte and Dr. Jane Adams, Executive Director of Keys for Networking, Inc. Audiotapes of the pilot focus groups were reviewed and critiqued by the youth research team.

Training youth on interviewing and focus group techniques

Drs. Nolte and Adams provided training in conducting focus groups, eliciting group responses, and recording information. Ten youth (from Illinois, Kansas, Montana, Ohio, New York, and Virginia) participated in the focus group training. The training covered six areas:

• Each question was reviewed and its rationale discussed including examples of "good" answers to each question and questions to use as probes for additional information.
• Instructions were given to manage the logistics including arriving early, arranging seating, handing out questions, locating restrooms, and other comforts for participants. Procedures were established to go over all the questions first, then solicit answers. Everyone was to be asked to answer; if they elected to pass, the interviewer was to go back to them.
• Confidentiality procedures were provided and discussed. Names would not be used (unless participants specifically requested) and data would be gathered so parents would be unable to identify responses from their own child.
• Managing problems arising from participant discussion and procedures to refer people to professionals were detailed.
• Instructions for telling participants how data was to be used were reviewed, including how they could request a copy of the final report.
• Instruction on the use of tape recorders was provided, including when to turn it on or off if participants requested to go ‘off the record.’

Each youth trained as a focus group leader was provided with a focus group kit that included everything needed to conduct the focus group and record the data. The kit included:

• Rules for conducting the focus group.
• Sign up sheets, which were mailed back to Keys for Networking, Inc., so participants could get paid.
• Audio tapes and tape recorder.
• Letter to give to agencies, families, and youth to recruit participants and explain the project.
• Permission and consent forms with directions on how to get these completed.
• Confidentiality statements and directions for obtaining informed consent.
• Self-evaluation form for the focus group leader.
• Postage to mail everything back to Keys for Networking, Inc.

Gathering Data

Family-run organizations across the U.S. were invited to assist the youth researchers identify participants and convene focus groups of youth and family members who had the experience of both substance abuse and mental health residential treatments. Trained youth interviewers from this project facilitated the focus groups with the support of staff from Keys for Networking, Inc., and the local family-run organizations. There were 10 participants in each focus group; one third were groups of parents and family members and two thirds were groups of youth. The youth researchers actually conducted a total of 15 focus groups, held in California, Georgia, Illinois, Kansas, Maine, New Mexico, Virginia, West Virginia, and the Washington, DC, area. Data from four focus groups was discarded because the individuals participating in the focus groups did not meet the criterion of having both a substance abuse problem and a mental health disorder.¹ In addition to the focus groups, Keys for Networking, Inc., mailed questionnaires to ten parents who couldn't attend the focus groups themselves but who were willing to participate because their own child had been in a focus group. The questionnaires addressed the same issues that were discussed in the focus groups. Keys for Networking, Inc., received six competed questionnaires. These responses were added to the data from the focus groups.

Recording Responses

All the focus group sessions were audio taped. The tapes were transcribed by Dr. Nolte who helped youth researchers at Keys for Networking, Inc., compile all the raw data into lists of responses for each of the questions. Youth and parent responses were compiled separately. Duplicated items were combined.

Analyzing the Data

The research team felt strongly about who was qualified to analyze the data. They did not want to have some ‘outsider’ or a person removed from the data analyze it. It was, therefore, decided to hold a conference to examine the data looking for common and recurring themes. The meeting was held in Kansas City in October 1999. Twenty-nine individuals met for two days to review the information that had been collected, make sense of it, and develop recommendations.

The participants in the Kansas City meeting were carefully selected in order to ensure that there was a real ‘member check.’ Individuals were selected because they had firsthand experience with co-occurring mental health and substance abuse disorders and were astute and courageous enough to speak openly and frankly about it. In addition to this expertise, participant parents and youth were selected to ensure: (1) geographic distribution and representation from the sites where the focus groups were held; (2) social and economic mix; and (3) racial and cultural diversity. Youth participants were both in school and out. Some were living with families and some were not. Some of the young people had children of their own and some didn't. Some of the youth had been incarcerated. Parent participants included an adoptive mother who is a schoolteacher, a husband and wife who are cooks, a mother who works for a national policy organization, and a mother who directs a state agency.

The group consisted of 12 youth and 17 adults. Among the youth, four had conducted focus groups and three had been participants. Among the adults, nine served as workgroup leaders, facilitators, recorders, and logistical support during the meeting. There were five parents (including three who had participated in focus groups), and three adults with the experience, training, or skills to provide support and structure for youth when the going got tough for any of them. These three individuals were available round the clock.

Before getting started, this group acknowledged that everyone had strong emotions associated with the subject and that both youth and parents were anxious about talking about it in front of each other. The working conference, therefore, opened with low stress activities to help everyone get acquainted, build trust, and express anxieties and expectations. Youth and parents anonymously posted brief descriptions of their hopes and fears related to sharing this very personal information. These descriptions are summarized below to illustrate the range of emotions associated with the topic. These feelings are likely to be present in any setting with youth and their families where co-occurring mental health and substance abuse disorders are discussed.

¹ Since participants in the focus groups were recruited by other individuals, agencies, and oganizations, the focus group leaders did not necessarily know in advance who was attending. This left open the possibility that some participants would not have co-occurring disorders and the experience of residential treatment.

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