Examining How Patient And Caregiver Lived Experiences Are Linked To Mental Healthcare Services Engagement During The First Episode Of Psychosis In Uganda

Psychosis (the loss of contact with reality often associated with hallucinations, delusions, disorganized speech and behaviour, and reduced social interaction) can be debilitating for the people who experience symptoms. 

When an individual experiences psychosis symptoms for the first time, it is defined as the first episode and effective and it is important that timely interventions (including medication and talk therapies) are provided during the first episode of psychosis to prevent complications, prolonged illness, and premature death.  

However, the first episode of psychosis is often in adolescents and young adults when engagement with mental health services is frequently difficult. 

The project

This work builds on previous work by Dr Mwesiga and his team that found evidence of poor engagement with mental healthcare services during the first episode of psychosis in Uganda: 3 in 5 first patients never return to the hospital after discharge despite effective treatments resolving patient symptoms. Those that return only do so because their symptoms have worsened, not because they are involved in care. Worryingly, among patients who are not engaged, 2 in 10 die within one year of discharge.   

This study will help understand what drives engagement with mental health care services during the first episode of psychosis, with a strong focus on lived experience and individual perspectives. 

The process

This longitudinal study was developed with the help of collaborators with lived experience of psychotic disorders.

Dr Mwesiga and his team will work with Uganda’s national psychiatric hospital to establish a cohort of 82 patient volunteers who have been diagnosed with a psychotic disorder for less than 12 weeks.

Using a range of techniques such as in-depth interviews and the draw-write-and-tell technique will help to build a picture of each individuals experience during their first episode of psychosis both for patients and their caregivers. This assessment will continue, past discharge, to continue to monitor progress.

The continuous outcome will be analysed using random-effects linear regression models for observed changes over time. Finally, the triangulation of qualitative and quantitative data will enable a more precise understanding of the lived experience of patients and caregivers during the FEP and the link to MHCS engagement in Uganda.

The potential

The results will allow future work to develop services promoting engagement to prevent complications, prolonged illness, and premature death. If we were to understand the drivers of engagement, we could develop early intervention services with selected components targeting these different drivers. The service would be relevant to low-resource settings and improve engagement with mental health care services to prevent complications, prolonged illness, and premature death.