Family communication and involvement in people with psychosis: A mixed-methods study in Ethiopia

Background: Psychotic disorders have a significant impact on global health. Affecting over 24 million people worldwide, schizophrenia contributes substantially to the global burden of disease and is associated with high rates of disability and mortality. Comprehensive interventions targeting psychosocial factors have been proposed as effective strategies to improve the lives of people with psychosis. Expressed Emotion (EE) is a well-studied aspect of family dynamics that has been shown to predict relapse in Western settings. Consequently, this understanding has guided the development of family-based interventions, yielding improved outcomes. However, the applicability of EE in non-Western settings is limited for several reasons. Its framework tends to generalize emotional and behavioural expressions that are inherently culturally variable. Additionally, EE predominantly highlights negative family interactions, overlooking supportive ones. The focus is often skewed towards family attitudes and behaviours, with less attention given to the experiences of people with psychosis.

In Ethiopia, a country with strong communal ties and limited formal mental health services, families are often the primary caregivers. Thus, a broader, culturally nuanced conceptualization of EE is necessary. The need for a contextual understanding of family communication in non-Western settings has been repeatedly emphasised, aiming to enhance the validity of the EE construct. Understanding the salient features of family communication is essential to identify relevant aspects of family interaction. This can inform targeted interventions to enhance positive communication and mitigate negative behaviours. Objective: This study aimed to develop an in-depth, socially embedded understanding of family communication and involvement in the daily lives of people with psychosis in the Ethiopian context. Based on the insights gained from the ethnography, the study developed and tested a contextual measurement tool for family communication in Ethiopia.

Method: A nine-month ethnography was conducted with 14 families living with a relative with psychosis in Ethiopia. Further insights were also gained from 20 in-depth interviews with stakeholders. This was followed by scale development, piloting, and validation studies. Initially, an extensive review of existing measurement scales was conducted to determine their applicability in the Ethiopian setting. Ethnography findings were mapped onto existing measures, relevant items were identified, and new items were generated to create a new measure. Cognitive interviewing and expert consensus meetings were used to assess the content validity and acceptability of the scale items. A total of 201 people with psychosis participated in the pilot study. Item-total, item-item, loading, and test-retest reliability metrics were used to inform item reduction. The revised scale was then assessed in an independent sample of 401 people with psychosis. Internal consistency, construct validity, convergent validity, and reliability of the newly developed family communication and involvement scale were evaluated.

Findings: Ethnography Three core themes were developed to explain family communication in Ethiopia: duty to care, communication landscape, and struggle for equal citizenship. The duty to care theme reflects the deep-rooted expectation of collective responsibility toward caring for a member with psychosis in Ethiopian families. However, this often leads to overcontrolling measures that can undermine the voice of the person with psychosis. The communication landscape theme underscores the cautious and subtle nature of interactions within families, where non-verbal cues frequently take the place of direct verbal communication. This restraint prioritizes maintaining stability over emotional expression, with negative attitudes and behaviours often inferred from daily routines rather than explicitly communicated. The struggle for equal citizenship theme highlights the challenges faced by people with psychosis in achieving full inclusion within their families and communities. They are often caught between the support and control exerted by their families, with rigid, all-or-nothing perceptions of wellness contributing to their exclusion. In many cases, the focus on meeting physical needs overshadowed the person’s psychological well-being, limiting their access to resources and social connections during less stable times. Across all themes, socioeconomic factors play a significant role in shaping family communication and inclusion in daily routines.

Scale Development and Validation The initial 37-item Family Communication and Involvement (FCI) Scale was drafted drawing items from relevant aspects of family communication identified in the ethnography and incorporating cross-cultural items from existing scales. Through expert evaluation, cognitive interviews, and pilot testing, the scale was refined to a bifactor, 24-item scale demonstrating strong psychometric properties. The final FCI scale exhibited excellent internal consistency (Cronbach's α=0.92) and acceptable convergent validity (r= 0.45 with WHODAS-2.0 and r= 0.48 with the Brief Psychiatric Rating Scale [BPRS-E]). Confirmatory factor analysis revealed an acceptable model fit, though further refinement could enhance the model’s fitness to the data.

Conclusion: This study provided a comprehensive understanding of family communication and involvement in the context of psychosis in Ethiopia. The findings highlighted how cultural norms, socio-economic challenges, and caregiving responsibilities deeply influence family communication and the inclusion of people with psychosis. The development of the FCI scale offers a valuable tool for measuring family communication and involvement in this specific context. The study's findings revealed the tension between support and control within families, often dictated by rigid views of wellness. Ultimately, the study underscores the importance of addressing the broader social and familial contexts in which people with psychosis live, with the potential to improve their care and well-being in Ethiopia and similar low-resource settings.

Recommendations: Based on the findings of this study, the following recommendations are made: • Mental health professionals should recognize and build upon the existing strengths of families when assessing family communication and involvement. By integrating an understanding of socio-economic realities, care can be tailored to enhance families’ capabilities and address both practical and emotional needs effectively.

• Interventions and care frameworks for psychosis should actively involve both individuals with psychosis and their families, fostering collaboration and shared decision-making. By strengthening inclusive family roles and building on existing caregiving practices, these approaches can enhance the sense of contribution and belonging for individuals with psychosis while ensuring support aligns with family capacities and cultural contexts.

• Develop policies that support caregiving families by building on their existing financial strategies and capacities. Initiatives such as targeted subsidies, support for income-generating activities, and community-based social protection measures can reduce financial strain while strengthening families’ economic resilience.

Keywords: Psychosis, Family communication and involvement, Ethiopia, Cultural context, Ethnography