Personnel
Pauline Jivanjee, Ph.D., Co-Principal Investigator
Jean M. Kruzich, Ph.D., Co-Principal Investigator
Introduction
This project addresses the priority of community integration for youth and families, as well as the key program themes of youth and family participation, stigma reduction, recovery, individualized planning, and successful transitions. The project is designed to gain understanding of community integration of youth as they transition from receiving services in the children’s mental health system to the adult system from the perspectives of youth, young adults, and caregivers. The project's participatory methodology was designed to allow us to explore the relationship of community integration to stigma, recovery, youth and family participation, and empowerment from the perspectives of youth and families.
In the past, mental health professionals determined the outcomes that would guide their work with individuals. With the advent of a service delivery paradigm incorporating consumer and family participation and empowerment, there has been a shift to individualized or person-centered outcomes. This approach requires professionals to play two distinct roles: first, that of learner; second, that of facilitator (Gardner, 1999). Therefore learning must precede any decisions about what role the professional might play in the provision of supports and services. Project objectives were aimed at the first role: learning about the lived experience of youth and families in dealing with the challenges to achievement of optimal community integration, and documenting approaches and supports that young adults and their families have used effectively to navigate the transition to young adulthood.
The project builds upon previous Center research on barriers to family participation in services (Kruzich, Jivanjee, Robinson, & Friesen, 2003), unique perspectives of African American families on participation in out of home mental health placements for their child (Kruzich, Friesen, Williams-Murphy & Longley, 2002), development of a family empowerment measure (Koren, DeChillo, & Friesen, 1992), and educational/individualized service planning (Friesen & Pullmann, 2002). In addition, theoretical and empirical literature on community integration of adults with serious mental illness and youth transitions to adulthood informed project design.
Goals & Objectives
Project Goal:
To gain understanding of community integration from the perspectives of transition-age youth, young adults, and caregivers.
Project Objectives:
- To gain youth, young adult, and family perspectives on the meaning of community integration for transition-age youth with mental health disorders across domains of living.
- To gain youth, young adult, and family perspectives on social, psychological, cultural, and economic barriers to community integration, including the effects of stigma.
- To gain understanding of supports for community integration, the relationship between resilience/recovery, empowerment and community integration.
- To gain understanding of the roles of families in supporting transitions to adulthood for youth with mental health disorders.
Major Activities
We formed two participatory research teams in Portland, Oregon and Seattle, Washington, with a youth co-researcher and a family member co-researcher on each team. In consultation with advisory groups of young adults with mental health disorders and family members, the teams developed focus group interview protocols and pre-focus group questionnaires for youth/young adults and family members. Advisors also made recommendations about participant recruitment. The project proposal was approved by the Portland State University Human Subjects Research Review Committee. Advisory group members have continued to provide consultation at all stages of the project.
Youth, young adults, and family members were recruited through contacts with schools, colleges, family support organizations, youth employment, and alternative educational programs, as well as mental health agencies. We deliberately attempted to recruit diverse participants in terms of ethnicity, age, sexual orientation and socioeconomic status. A total of 21 separate 90-minute focus groups for youth, young adults, and family members was held in a variety of community settings in the Seattle and Portland metropolitan areas, including public libraries, human service agencies, and university settings.
Youth and family member co-researchers were trained in focus group research methodology, ethical aspects of research, and issues related to confidentiality, and they took the lead in facilitating focus groups with the goal of increasing the comfort level of participants discussing sensitive topics. A principal investigator or the project manager assumed a secondary role of taking notes and taping the session. Following the focus group interview, participants received $30.
Focus group participants included 35 young men and 22 young women with a range of mental diagnoses. Forty-two family members (of whom 40 were female) participated in separate family focus groups. In addition to completing a short questionnaire, focus group participants answered questions about their views of 1) the meaning of community integration and a successful life in the community; 2) barriers to community integration; 3) supports to community integration; 4) their hopes for the future; and 5) advice they would give to another youth (or family member) struggling with similar challenges.
Responses from the questionnaire were entered into SPSS for computation of descriptive statistics. Focus groups were audio-taped, transcribed, and analyzed with the assistance of qualitative analysis computer software. Following the analysis of data, available research participants were invited to member checking meetings where preliminary findings were reviewed and participants invited to comment on report of findings and to suggest clarifications.
Tools/Products Coming soon.
Publications/Presentations
Involving Young People with Mental Health Needs and Parents in Qualitative Research. Presented at the 10th Annual Advances in Qualitative Methods Conference in Vancouver, BC, Canada, October 2009.
Improving Transitions to Adulthood for Youth with Mental Health Needs: Youth and Parents' Experiences and Recommendation for Improving Transition Supports. Presented at the 2009 Building on Family Strengths Conference: Putting Youth & Families First in Portland, OR, June 2009.
Latest Updates
This project was a qualitative study involving transition-age youth and their caregivers which explored youth and family views of community integration. The project has ended but project staff continue to work on producing articles and other products. An article reporting youth perspectives on community integration has been submitted for publication. Two other journal articles are in preparation, one focused on family perspectives on community integration of transition-age youth and the other comparing the perspectives of African American and Eurpean American youth. We are also planning “youth friendly” and “family friendly” reports.
Two presentations were made at the National State of the Knowledge Conference on Increasing Community Integration of Individuals with Psychiatric Disabilities in Philadelphia in September 2006: "Young Adults with Mental Health Needs Transitioning to Adulthood: European American and African American Perspectives" and "Young Adults with Mental Health Needs Transitioning to Adulthood: Family Perspectives on Community Integration."
Earlier presentations were titled “Voices of Youth and Families on Transitions and Community Integration” at the Federation of Families Conference in Washington, DC in November 2005. A report of young people's perspectives, titled "Community Integration of Transition-Age Youth: Voices of Youth and Young Adults” was presented in February 2006 at the 19th Annual Research Conference: A System of Care for Children's Mental Health: Expanding the Research Base in Tampa, Florida.
A symposium titled "Community Integration of Young Adults with Mental Health Difficulties: Family Perspectives and Comparison of African American and European American Youth Perspectives," and a poster titled "School and Work: Challenges and Opportunities for Transition-Age Youth with Mental Health Difficulties: Comparing Experiences of European American and African American Youth" were presented at the Research and Training Center on Family Support and Children's Mental Health's Building on Family Strengths Conference in June 2007 in Portland, Oregon.
Latest presentation: "What Makes a Difference for Transition Age Youth with Mental Health Needs? A Comparison of European American and African American Perspectives on Community Integration." Washington State Adolescent Health Conference Partnership for Healthy Youth Conference, SeaTac, WA, August 29, 2007 (Jean Kruzich, Tamara Johnson, Rion Tisino, Chris Clark).
|
Latest Updates