Patient and caregiver lived experiences and mental health service engagement during first-episode psychosis in Uganda: a longitudinal mixed-methods study protocol
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Introduction
Engagement with mental health services (MHCS) during the first episode of psychosis (FEP) 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 which aims to examine the relationship between patients and caregivers lived experiences and mental health service engagement during first-episode psychosis.
Methods and Analysis
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 ages 18-60, less than 12 weeks on antipsychotic medications, living in the greater Kampala Metropolitan Area, with a consenting caregiver. Caregivers must be an adult (> 18years) providing full-time care for at least 6 months prior. 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 semi-structured questionnaires. The data will be analysed using Stata version 18, and participants will be reimbursed for their time.
Ethics and Dissemination
Ethical clearance has been obtained from the School of Medicine Research and Ethics Committee (SOMREC) Ref: Mak-SOMREC-2024-1002 and institutional approval from Butabiika 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.
Strength and limitations of the study
This longitudinal mixed-methods study integrates patient and caregiver perspectives, enabling a holistic understanding of mental health service engagement during the first episode of psychosis. Particularly the use of an innovative draw-write-and-tell method for qualitative research in this population is novel.
Inclusion of lived-experience narratives alongside service engagement trajectories strengthens the relevance of findings for mental health service design and early intervention strategies in low-resource settings.
Conducting the study at a national referral mental health hospital allows in-depth examination of care pathways within a specialist service context; however, findings may not be fully generalisable to community-based or non-specialist settings.
Exclusion of individuals with comorbid substance use disorders may limit the applicability of findings, given the high prevalence of substance use among people experiencing first-episode psychosis.
