Cultural Considerations in Shared Decision Making Among Latinx with Schizophrenia and Their Families

Background and Purpose: Shared decision making has primarily focused on the provider and patient interaction. However, for many patients with schizophrenia, family plays an important role in illness management and often involves engagement in treatment decisions. As such, a broader approach to decision making that includes family members is needed. Among Latinx, shared decision making may be particularly relevant given that Latinx with serious mental illness are more likely to live with family compared to other groups. Shared decision making may also be congruent with a collectivistic orientation that values family involvement in treatment. Considering the limited number of studies addressing shared decision making among Latinx with schizophrenia and this group’s underutilization of services, learning about patient and family caregiver perceptions regarding shared decision making can inform potential targets for treatment. This study explored how shared decision making is managed among Latinx with schizophrenia and their families and examined the challenges and facilitators to the shared decision-making process.

Methods: Participants were part of a NIMH-funded intervention development study for primarily Spanish-speaking Latinx family members of individuals with schizophrenia. Data for the current study come from two follow-up studies with intervention group participants. Using purposive sampling, semistructured interviews were conducted with 34 participants (14 patients; 20 family caregivers) in their preferred language. Participants were asked about family involvement in treatment. Participants noted benefits and challenges to family involvement. Using an inductive approach, a second follow-up study was conducted with 24 participants (11 patients; 13 family caregivers) wherein questions exploring the shared decision-making process were posed with follow-up probes to capture views on shared decision making. Data were analyzed using thematic analysis, which consisted of comparing codes across and within participant transcripts. Memo writing was used throughout the analysis process to document decisions regarding theme development.

Results: It was common for decisions regarding treatment to be discussed with family members either due to patients seeking their family’s involvement or families seeking direct involvement. Patients experienced challenges due to disagreements regarding treatment choices that resulted in problematic relationships with family members. Families noted challenges with providers due to language barriers and provider availability that limited communication and lead to feelings of powerlessness and frustration that impacted their relationship with patients particularly when patients experienced instability or crisis. Overall, shared decision making for patients and families was successful when it was provider initiated and supported. In addition, for family members, recognizing patient autonomy and knowing when more direct involvement was needed helped to facilitate improved communication regarding treatment with patients and providers.

Conclusions and Implications: Communication was a prominent theme in the shared decision-making process. In particular, provider support of family involvement as demonstrated in their willingness to engage families and patients in treatment was key to families and patients’ own communication and openness regarding treatment decisions. Findings highlight the need for interventions targeting improved shared decision-making processes that include all involved parties. Doing so could address treatment disparities for Latinx by improving their experience with treatment and support patient and family caregiver outcomes.