Improving outcomes for people with psychosis in Pakistan and India -enhancing the Effectiveness of Community-based care (PIECEs)
Abstract
Around 5‒8% of the global population suffers from a severe mental illness (SMI). Approximately 89% of individuals with SMIs in low‒middle income countries (LMICs) like Pakistan experience treatment gaps. This is most pronounced for people with psychosis (PWP), 75% of whom fail to receive adequate care, which is provided almost exclusively at in-patient facilities that are removed from local contexts and lack effective psychosocial interventions.
PIECEs adapted and tested an evidence-based app-mediated intervention designed to improve community-based care for PWP. To increase social inclusion and amplify the voices of people with lived experiences (PWLE), Interactive Research & Development (IRD) co-created a user-led theatre troupe with PWP, caregivers, healthcare workers (HCWs), and actors, utilizing the Theatre of the Oppressed (TO), which engaged 742 individuals across three pilot groups. Conversations emerging from performances identified resources, fostered relationship building, and supported the development of an evaluation framework to assess the effect of inclusive arts-based interventions in mental-health community engagement.
Introduction
IRD Pakistan initiated the PIECEs research in partnership with Queen Mary University of London (QMUL), UK, and Schizophrenia Research Foundation (SCARF), India, from September 2020 in two clinical facilities in Karachi, Pakistan. To support public involvement, participatory arts methodologies, co-designed with People’s Palace Projects at QMUL, were embedded into the randomized control trial (RCT)’s community engagement. These ensured that the voices of PWP and their families were at the forefront of research activities to initiate contextual and client-centred feedback around experiences of SMIs in Pakistan. Community-engagement initiatives centred on TO, a participatory arts-based methodology which aims to empower audiences to work on solving challenges in their lives pertaining to care services at facilities, at home, and in their communities, making them agents of change. A user-led theatre troupe comprising three PWP, two caregivers, six HCWs, and two actors was created and piloted to engage mental health professionals, medical students, and the general community.
Early findings indicate that including PWLE in developing key messages pertaining to their care by utilizing artistic media challenges social norms and perceptions of their capacities, even among HCWs.
Who should benefit?
According to the World Health Organization, SMIs affect 1 in 300 people globally. SMIs generate high costs through loss of productivity and ongoing healthcare use, and lower life expectancies by 10‒20 years. The burden is greatest in LMICs. Care for PWP is usually provided through in-patient clinical facilities, where patients can stay for long periods. LMICs urgently need effective, appropriate, and low-cost forms of care that utilize and strengthen existing personal and social resources available to individuals, their families, and communities. To improve outcomes for PWP, IRD Pakistan in partnership with QMUL and SCARF piloted an evidence-based application, DIALOG+, at two clinical facilities in Karachi with psychologists and psychiatrists, adapting it to the local context to structure conversations between patients and clinicians, empowering PWP to be active decision-makers in their own treatment plans.
To raise awareness of the needs of PWP and help disseminate research findings, IRD worked closely with a lived experiences advisory panel (LEAP) as well as patients, caregivers, and mental health professionals from the two clinical facilities to co-develop a theatre troupe.
As marginalized citizens, PWP can remain ‘outside’ the realm of services, access, and community participation. They often have low self-esteem due to their experiences, and may not believe they are worthy of being treated better, or that it is possible or safe for them to change their behaviour. Such individuals were regarded by the research team as primary stakeholders with embodied knowledge. The theatre troupe, managed by IRD, focused on three sub-populations to showcase the arts-based and experimental nature of the engagement being piloted.
The audiences comprised members of the PWP’s local communities (including neighbours and extended families), healthcare professionals who care for PWP, and medical students.
Engagement
IRD has used TO across other health domains, notably for addressing HIV stigma and increasing vaccine confidence. Under PIECEs, the research team built on existing work by ensuring its troupe was led by PWLE, who were actively involved in stakeholder interaction through workshops, script generation, and performances. While there have previously been groups with lived experiences of socio-economic hardships utilizing the arts, like those experiencing homelessness, these methodologies have typically been used with PWLE of SMIs in workshop settings only, or with them as passive viewers instead of active and involved participants. Integrating TO with a user-led model posed an innovative and immersive mechanism for fostering awareness and social participation of PWP, enhancing patient autonomy, agency, and wellbeing.
Three pilot ‘labs’ were conducted with the theatre troupe in separate two-day workshops. These were salient in understanding the local contexts in which PWP live and seek treatment.
The first of the sessions engaged general members of the PWP’s local communities. Participants identified shared experiences around psychosis, focusing on how the stigma faced by PWP and their families can lead to lowered trust and broken community ties.
The second session engaged HCWs who treat PWP at care facilities. Themes of caregiver burden and the need for institutional support stimulated participants to consider alternate forms of therapy, and the upskilling of clinical staff towards incorporating the arts in psychiatric care.
The third session engaged medical students who were completing their psychiatry rotation. These discussions informed the research team about how de-stigmatizing the profession could benefit PWP by increasing the number of certified HCWs.
Scripts co-developed with the theatre troupe, which emerged from the themes identified during the pilot labs, were converted into performances and taken into representative communities across Karachi city, generating wider discussion.
It was important to accommodate members’ capacities due to differing cognitive abilities. Strengths were identified and built upon during training, and adequate time was provided for rehearsals and building comfort with the content. The team faced challenges while recruiting members, as many PWP lacked confidence in their abilities, and many HCWs lacked time to give to the troupe. Recruitment focused on engaging with PWPs over a longer period of time and reaching out to early-career HCWs with lower patient caseloads.
Research
It was important for the research team to centre inclusion of PWP across all programmatic activities, to ensure research outputs were rooted in their realities, and to avoid tokenism when developing a model for user involvement. Relevant stakeholders in the social ecology of a PWP were consulted, involved, or included in the design, implementation, evaluation, and dissemination of the research. This was achieved through setting up a LEAP comprising PWP and their caregivers to develop long-term service-user involvement. The LEAP provided expert consultation and contributed towards the contextualization of psychosis research in Pakistan through scoping activities, identifying priorities, and providing feedback on the development of the user-led theatre troupe.
LEAP members supported the research team by sharing personal stories, including their treatment journeys, which informed the development of the arts work and community engagement materials. The LEAP also identified inclusive and accessible dissemination and communication channels for the research and arts outputs.
Workshops were held with PWP, caregivers, and mental health professionals to introduce the TO methodology to internal and external stakeholders, which acquainted them with participatory theatre-based practices, and provided a safe space to share experiences and insights. This helped to generate stories depicting the lived realities of these communities, and highlighted the challenges faced by service users, their families, and healthcare professionals in the access and provision of treatment in existing care pathways.
Frameworks for mental health promotion and early-intervention strategies for PWP in LMICs were assessed, along with methodologies for monitoring and evaluating community engagement across the project period. The team, in partnership with the LEAP, developed community engagement modules and forum theatre scripts which the programme’s Community Health Officers were trained on. These modules and performances worked towards increasing awareness of psychosis and its psychosocial impact on stakeholders; increasing acceptance of and improving attitudes towards PWP; and creating advocacy movements within communities through an understanding of the prevalent communal attitudes towards PWP and their families. Awareness sessions and performances were conducted in public spaces, community members’ houses, vocational institutions, clinical facilities, factories, shops, and schools.
These activities helped in creating a more equitable, inclusive research programme, and upheld the essence of community engagement and user involvement.
