Consumer Preferences for Life Goals: Voices of Experts of Lived Experiences (WITHDRAWN)

Background and Purpose: Studies show a 25 year difference in mortality among individuals with serious mental illness (SMI) compared to those in the general population.  Thus, the impetus is great for consumers and providers to work together to ensure that treatment options are aligned with consumer needs. An important component of providing person-centered care for individuals with SMI is to understand and support their preferences for life goals. Promoting shared decision making based upon consumer preferences has been shown to increase long-term treatment adherence and active participation.  Studies on outcome preferences have put forth lists generated through expert consensus with little to no insight from consumers. Preferences have included management of psychotic symptoms and medication side effects, developing social relationships, and job attainment.  While these mirror major aspects of individual’s lives that are impacted by SMI, they may be limited in scope as they have not been derived directly from consumers. Using a resilience perspective, this study aimed to assess preferences for life goals, and perceived facilitators and barriers that are meaningful to adults with SMI.

Methods: Focus group methods were chosen to elicit conversations about lived experiences relating to preferred goals among individuals with schizophrenia spectrum disorders.  In this way, participants were encouraged to be the experts of their experiences thus, fostering consumer-centered research and subsequently, consumer-focused care.  The sampling design was purposive with simple random sampling in order to seek a diverse group of adults in treatment and community settings.  29 individuals recruited from three community-based mental health centers in New York City and Binghamton, NY, participated in four focus groups.  Following a phenomenology approach, participants were asked broad open-ended questions to prompt responses about goal attainment, facilitators, and barriers based on their experiences and desires. Data were analyzed using thematic analysis. Researchers reviewed transcripts and developed initial codes following open coding methods in which labels for pieces of data were developed that summarized initial patterns. Axial coding was then used to identify emerging themes, relationships among the open codes, and to hone in on specific nuances the data revealed. To ensure reliability, consensus was achieved between researchers through individual and collective coding processes.

Results: Results showed four overarching preferences for goals’ categories: goals relating to independent living, lifestyle and social participation [e.g. maintain health, recreational activities], constructs of psychological well-being [e.g. self-esteem, self-efficacy], and treatment [e.g. medication compliance, alignment of goals with providers]. Participants described facilitating factors such as family and peer support, faith, hope, high self-concepts, acceptance of illness, and creative expression. Barriers were often described as the opposite of the facilitating factors. Unique barriers included: re-hospitalization, systemic issues relating to care that maintains a ‘hospital identity’, and stigma.

Conclusion and Implications: Study findings from individuals with lived experiences can enhance recovery-focused treatment by providing nuanced information about goals that are relevant to consumers. Further, findings can inform person-centered decision making practices about achieving goals and may help to alleviate potential barriers of the recovery process that are influenced by micro and macro level factors.