20th May 2026, Kampala, Stakeholders in Uganda’s mental health sector have called for greater inclusion of people with lived experience of psychosis in the design and delivery of mental health services following the dissemination of findings from the SCAPE-U research study titled "Strengthening Care in Collaboration with People with Lived Experience of Psychosis in Uganda."
The dissemination meeting, held at Silver Springs Hotel, brought together researchers, health professionals, policy makers and community stakeholders to discuss key findings and recommendations aimed at improving mental health care in Uganda.
The study was led by You Belong Uganda in collaboration with George Washington University, University of Nottingham, Liverpool School of Tropical Medicine, Makerere University, Infectious Diseases Institute, Butabika National Referral Mental Hospital and the Ministry of Health Uganda.
Presenting the study findings, Dr Byamah Mutamba Deputy Executive Director Butabika National Referral Mental Hospital explained that the study population included SCAPE facilitators, primary health care providers, community health workers, PhD researchers, service users, family members, research assistants and data collectors.
Dr Mutamba noted that the study initially faced challenges identifying individuals with psychosis at the community level, which prompted researchers to amend the recruitment strategy and include participants from tertiary care facilities.
“The study population was comparable in terms of social demographics and illness characteristics,” Dr Mutamba said.
One of the unique aspects of the SCAPE-U intervention was the participants’ ability to use photovoice to tell their recovery stories, they learnt to take pictures and use them to narrate their personal experiences which they shared during family visits. Researchers used both quantitative and qualitative assessments to evaluate outcomes.
According to the findings, improvements in mental health outcomes were observed in both the intervention and standard care groups. However, participants receiving home visit interventions showed significant reductions in symptoms, particularly among individuals who were new to mental health services. And also, the study showed 9 out of 10 people with health conditions report negative impact of stigma on their lives.
The study used the Positive and Negative Syndrome Scale to assess symptoms associated with psychosis. Researchers explained that positive symptoms often make individuals more active and noticeable, while negative symptoms contribute to withdrawal and reduced engagement.
The development and contextualization phase of the study also helped researchers better understand the importance of working alongside people with lived experience. This informed stronger support systems during the pilot phase.
The study engaged a wide range of stakeholders including education departments, alternative care providers and faith healers to strengthen awareness and referral pathways for mental health care. Information, Education and Communication (IEC) materials were co-designed with the Ministry of Health and potential beneficiaries to support awareness and referrals.
Researchers emphasized that people with lived experience of psychosis should not only be viewed as recipients of care, but also as active agents and co-designers of interventions.
Dr Mutamba also said that the study concluded that it is feasible, acceptable and safe to work collaboratively with people with lived experience across the continuum of care, provided there are strong partnerships and support strategies in place.
Dr Byamah Mutamba Deputy Executive Director Butabika National Referral Mental Hospital Presenting the study findings
Addressing participants during the dissemination meeting, Dr Juliet Nakku Executive Director Butabika National Referral Mental Hospital underscored the importance of involving people with lived experience in mental health care planning and delivery.
“The impact of visiting homes of people with lived experience is powerful and demonstrates the value of co-designing mental health care interventions,” Dr Nakku said.
She further proposed “Bringing Mental Health Back to Our Communities” as a possible theme for Uganda’s Mental Health Awareness Month and called for greater investment in community-based mental health services.
Dr Nakku also urged the Ministry of Health to train community health extension workers and integrate SCAPE facilitators within the community mental health system to improve access to care and strengthen long-term support for people living with psychosis.
Assistant Commissioner of the Mental Health Division at the Ministry of Health, Dr. Hafsa Luswata highlighted the significant treatment gap and the challenges associated with diagnosing mental health conditions.
“Mental health conditions often go undiagnosed and untreated, leaving many individuals without the care and support they need,” she noted.
Dr. Luswata emphasized the critical role of peer support workers in mental health care, describing them as “an essential bridge between communities and the health system” whose lived experiences help provide compassionate care and encouragement to people facing mental health challenges.
She also addressed the persistent budget constraints affecting mental health services, stressing the urgent need for increased funding. “Investing in mental health is investing in the wellbeing and productivity of our communities,” she said.
Dr Juliet Nakku Executive Director Butabika National Referral Mental Hospital speaking
In addition, Dr. Luswata outlined plans to expand mental health initiatives through different institutions and capacity-building workshops aimed at raising awareness and improving access to mental health support services.
“We must take mental health services closer to the people by strengthening programs in schools, workplaces, and communities,” she added.
