Patient and caregiver lived experiences and mental health service engagement during first-episode psychosis in Uganda: a longitudinal mixed-methods study protocol.

Abstract

Engagement with mental health services during first-episode psychosis is critical for symptom control, quality of life and relapse prevention. However, disengagement rates remain high in Uganda, with severe consequences for patients and caregivers. This study protocol describes a mixed-methods investigation that aims to examine the relationship between patient and caregiver lived experiences and mental health service engagement during first-episode psychosis. The mixed-methods study will recruit 82 patients with first-episode psychosis and their primary caregivers from Butabika National Referral Mental Hospital in Kampala, Uganda. Inclusion criteria are being aged 18-60 years, having received antipsychotic medication for fewer than 12 weeks and living in the Greater Kampala Metropolitan Area, with a consenting caregiver. Caregivers must be adults (aged ≥18 years) providing full-time care for at least 6 months prior to enrolment. Patients with substance use disorders will be excluded. Qualitative data on the lived experiences of patients and caregivers will be collected using the draw-write-and-tell method, while quantitative data on service engagement and associated factors will be collected using semistructured questionnaires. The quantitative component is exploratory and is intended to identify candidate predictors of engagement for testing in future adequately powered studies. The data will be analysed using Stata V.18, and participants will be reimbursed for their time. Ethical clearance has been obtained from the School of Medicine Research and Ethics Committee (SOMREC) (reference: Mak-SOMREC-2024-1002) of Makerere University and institutional approval from Butabika National Referral Mental Hospital. All participants will provide informed consent prior to participation. Data will be de-identified and securely stored, with results disseminated through peer-reviewed academic publications, conferences and community stakeholder workshops.