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

Introduction

This report presents the findings of a two-year project intended to document and summarize the experiences of youth with co-occurring mental health and substance abuse problems and their families. The purposes of this study were to offer youth and their families the opportunity to reflect on and give voice to their experiences, to identify their successes and concerns, and to formulate recommendations so that a national audience might learn from their experience and improve services. The work was funded by the Substance Abuse and Mental Health Services Administration in the U.S. Department of Health and Human Services and conducted by two family-run organizations — the Federation of Families for Children's Mental Health, Alexandria, Virginia and Keys for Networking, Inc., Topeka, Kansas.

A unique and key feature of the study was the high ownership of youth throughout. Their control over the study led to a strong sense of ownership which was key to establishing the trust and comfort necessary for participants to think deeply about and honestly share details and feelings about experiences that were very personal — even painful.

It was a new experience for youth to do this kind of work and they needed substantial training and support from more experienced adults to carry it out. Throughout the project, both the youth researchers and the family members assisting them had to work through the tensions inherent in their different perspectives and develop relationships which, in essence, transformed the traditional ways adults and youth relate to each other. The youth were really in charge. They learned how to exercise this new authority judiciously and understand the consequence of their decisions. The adults were really not in charge. They learned how to guide youth by providing training and support without the adults having the ‘last say’ about how the study would proceed.

A team of youth trained to be researchers designed the questions. They carried out the focus groups and interviews, and they analyzed the data. Keys for Networking, Inc., and the Federation of Families for Children's Mental Health provided support, training, and guidance, and compiled the information the youth had collected. The youth on this research team came from all over the country and did much of their work together via telephone conference calls facilitated by a researcher hired to teach them. Family-run organizations from around the country that are focused on advocacy for children with emotional and behavioral issues assisted by setting up focus groups and arranging interviews so youth could collect data from their states.

In the course of doing this study, both the youth and their parents voiced many stressful, painful, and very personal experiences related to the topic of addressing the needs of youth with co-occurring substance abuse and mental health problems and their families. The recommendations made as a result of these disclosures cut across class, race, and cultures and are much more than a simple critique of services. They point the way for policy makers and practitioners who are committed to achieving better outcomes in the future.

The youth and families who participated in or worked on this study took a risk when exposing themselves with their public testimony. Some youth and their parents were sharing their experiences with each other for the first time during this process. Everyone who took these risks did so because they wanted to help shape public policy and improve both the mental health and substance abuse service delivery systems for youth and their families. In Kansas City, small groups of youth and family members met and discussed the raw material separately. The responses and conclusions of each group were shared in a manner that protected the identity of the individuals. In other words, parents could not tell which comments or experiences their own children and youth had contributed and youth could not tell what their own family members had said.

We learned much. Tragically, youth with co-occurring mental health and substance abuse disorders and their families rarely get the kind of help they need at the time they need it. Services and supports are fragmented, isolated, and rigid. Peer-to-peer support for both youth and families, really accurate and useful information for both youth and families, and combined treatment that includes families is called for. And mostly, youth and their families want to be heard and respected. They want a say in deciding what services and supports they will receive as well as where and how the services and supports will be provided.

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