Young adults with mental illnesses: their active participation in medication decisions and in research
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Background: Young adults with mental illnesses derive significant benefits from active participation in making treatment decisions and in participatory action research. Nevertheless, their participation in both activities has been limited. This dissertation consists of three papers focused on young adults with mental illness and their participation in treatment decision-making. Objectives: Study 1 aims to enhance the Finfgeld empowerment model to reflect the experiences of young adults with serious mental illnesses (SMI) who are active participants in making medication decisions. Study 2 explores barriers and facilitators to active participation. Study 3 describes key factors for engaging young adults in a participatory action research (PAR) project. Methods: All studies used qualitative methods informed by grounded theory and constant comparative thematic analysis. Study 1 used Finfgeld's empowerment model to guide interviews with 24 young adults with SMI to understand how they perceived the experience of active participation in treatment decision making. The author then identified themes in the transcripts and field notes. Study 2 used these interviews and analytic techniques to identify facilitators and barriers to active participation. Study 3, a longitudinal case study of a PAR project, included semi-structured interviews with stakeholders, document reviews, and facilitator participant-observation. Results: Young adults with SMI reported that their active participation in making medication decisions was based on mutual trust with psychiatrists who were/knowledgeable, caring, and respectful. The most active participants reported that their psychiatrist encouraged participation and made themselves immediately available as needed. Barriers and facilitators to participation in decision-making included: 1) attributes of the psychiatrist, 2) self-efficacy of clients, and 3) organizational and structural factors. Six key factors supporting active participation of young adults in research were: 1) research leadership's commitment, 2) meaningful relationships with stakeholders and policy-makers, 3) an individualized strengths-based approach, 4) developing self-efficacy through learning and working, 5) addressing the power imbalance between researchers and young adults, and 6) adult mentoring. Conclusions: These findings can help clinicians, researchers and policy makers promote the active participation of young adults in treatment and research. Future research will benefit from data-driven development of an enhanced empowerment-based conceptual model of active participation.
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