SMI causes significant distress to affected people, families and wider communities, generating high costs through loss of productivity and ongoing healthcare use. The burden is greatest in low- and middle-income countries (LMICs), where there is a lack of financial resources and qualified staff to provide extensive specialised services . Lack of mental health services and widespread poverty means that mental health issues often remain undiagnosed, misdiagnosed, or untreated within both countries. In India, the estimated lifetime prevalence of mental disorders is 13.9%, with inadequate infrastructure, financial and human resources resulting in a ratio of 3 psychiatrists per million people . The treatment gap is calculated at 70-75% for people with psychosis. The prevalence of mental health disorders in Pakistan is reportedly up to 34%, and inadequate attention to mental health in the public sector has resulted in an estimated ratio of 2-3 psychiatrists per million people .
Care for people with psychosis in India and Pakistan predominantly exists in conventional inpatient facilities, where people can stay for long periods removed from their social context and without effective psychosocial interventions. Lack of qualified staff limits the ability to provide services used in high-income countries (HICs) such as multi-disciplinary teams or specialised psychological treatments (e.g., Cognitive Behavioural Therapy) . LMICs therefore need effective, appropriate and low-cost forms of care that utilise and strengthen existing personal and social resources available to individuals, their families and communities. Where investment has occurred, it has often focused on the detection of SMI, and/or on early intervention. Such approaches are promising, but fewer research activities and resources are allocated to those with chronic psychosis, where community-based interventions are severely limited. Reducing the treatment gap for individuals with psychosis by providing low-cost, effective interventions is an urgent priority.
The overall aim of the project is to improve the quality of community-based care for patient with psychosis in India and Pakistan by adapting and testing an evidence-based, low-cost and generic approach (DIALOG+), and up-scaling through the use of participatory arts methodologies and community engagement. To achieve this, we aim to:
- Adapt DIALOG+ to ensure appropriateness to the local context;
- Test the feasibility, acceptability, effectiveness and cost-effectiveness of the intervention in improving QoL, and secondary outcomes (symptoms, treatment satisfaction, physical health, social situation) for people with psychosis;
- Develop an implementation toolkit to aid wider dissemination and upscale;
- Build the capacity of local researchers and services through a programme of capacity-building and knowledge exchange;
- Engage with the local community, using digital and social media, and innovative arts-based approaches;
- Develop a model for user involvement in research, including establishing Lived Experience Advisory Panels (LEAP).
DIALOG+ is an app-mediated intervention that has been shown to improve mental health outcomes, including quality of life, for people with SMI. During each meeting with their clinician, patients begin by rating their life and treatment satisfaction and state whether they need additional help in each area. As DIALOG+ is an app-based intervention, the results are stored and can be compared with previous ratings. Finally, the intervention helps clinicians provide solutions for concerns raised by the patient. Although this intervention has been shown to be effective within high income countries such as the UK, it requires cultural adaptation and validation within India and Pakistan for it to be implemented as part of routine care.
DIALOG+ consists of a patient-centred assessment whereby the clinician invites the patient to rate their satisfaction with 11 different life domains and treatment aspects. This is followed by a four-step solution-focused approach to identify the patient’s resources and develop solutions to deal with the patient's concerns. The intervention is available as an app and makes use of a tablet computer (e.g. ipad or android device) within routine clinical meetings. Clinicians will receive training from the researchers in how to use the intervention, including how to support patients who are unfamiliar with a tablet computer.
PIECEs work packages:
Work package 1. To assist with the adaptation, the context in which the intervention will be delivered, and the readiness for services to adopt the approach, will be assessed through a small-scale situation analysis. This will be followed by a mixed method approach consisting of a small-scale pilot of the existing DIALOG+ intervention and participatory focus groups with different participant groups e.g. patients, carers, clinicians etc.
Work package 2. To assess the acceptability and feasibility of the adapted DIALOG+, we are now recruiting participants into a cluster randomised controlled trial at three sites (1) SCARF outpatient clinic (Chennai, India); (2) Jinnah Postgraduate Medical Centre and (3) Karwan-e-Hayat (Karachi, Pakistan).
Work package 3. A qualitative process evaluation will identify barriers and facilitators to implementation alongside two types of participatory workshops, SALT and Quality Improvement.
Work package 4. Throughout the programme, we will enhance service and research-capacity by developing a critical mass of skilled individuals to sustain research activities.
Work package 5. Running throughout we will conduct a participatory arts-based project to interact with local communities, give voice to people with psychosis, and promote new understandings for researchers and service users.
Participatory Arts Research:
To engage stakeholders and give voice to people with psychosis, a participatory arts-based project is being implemented utilising different arts-based methods including Theatre of the Oppressed (TO) to interact with local communities in both India and Pakistan. Working alongside the local arts organisations in both countries, people with lived experience of psychosis, family members, and the wider community will be invited to participate in physical exercises, games and drama techniques designed to activate participants’ critical engagement, stimulating public participation in key social debates. This will help raise the profile of the project, involve individuals who would not usually participate in research, and provide a lasting resource for organisations within both India and Pakistan.