Title: Improving outcomes for people with psychosis in Pakistan and India – enhancing the Effectiveness of Community-based care (PIECEs)
Funder: Department of Health and Social Care

Abstract: BACKGROUND AND RATIONALE Chronic psychosis affects >2% of the world s population causing significant distress to individuals, families and wider communities and high societal costs. Low- and middle-income countries lack the financial and human resources to provide comprehensive community care as in high-income countries. This results in a large treatment gap, with three out of four people unable to access appropriate care. Low-cost, effective interventions are therefore an urgent priority. One potential solution is DIALOG+, a patient-centred and solution-focused intervention, which has been shown to improve patients quality of life and reduce care costs in high-income countries. It does not require specific professionals or additional referrals, but is instead implemented within routine appointments by a range of staff, including lay health workers. AIMS AND OBJECTIVES The overall aim is to improve the quality of life for people with chronic psychosis. This will be achieved by adapting and testing DIALOG+. The programme also aims to foster knowledge exchange, increase local research and service capacity and upscale the intervention through participatory arts methodologies and community engagement. METHODS Five interlinked work packages (WPs) will utilise a range of participatory methods. WP1 will iteratively adapt DIALOG+ to ensure it is culturally appropriate. An initial situation analysis and 5 interactive workshops with local stakeholders per country will be followed by piloting the adapted intervention over a 3-month period with 4 clinicians and 20 patients per country. The effectiveness and cost-effectiveness of the adapted DIALOG+ intervention will be tested in a cluster randomised controlled trial with 28 clinicians and 210 patients per country. Health and social outcomes, including quality of life, will be assessed at baseline, 6 and 12 months post-randomisation (WP2). A qualitative process evaluation (WP3) will identify barriers and facilitators to implementation. This will be used alongside participatory workshops with stakeholders employing different engagement methods (SALT and QI) to develop the implementation toolkit. Service and research-capacity will be enhanced through a programme focused on developing a critical mass of skilled individuals to sustain research activities (WP4). WP5 will utilise different arts-based methods including Theatre of the Oppressed to interact with local communities, give voice to people with psychosis and promote new understandings for researchers and services. To support the research, a Lived Experience Advisory Panel (LEAP) will be set up in each country. The LEAPs will develop research materials, interpret results and ensure appropriate dissemination methods. This will provide a model for future user-engagement, an area highlighted as a need in both countries. IMPACT AND DISSEMINATION Through participatory methods we will raise awareness of the research and promote local ownership. We will facilitate sustainable change by increasing service capacity through higher efficiency, promoting local research expertise and widely disseminating the intervention and implementation toolkit. The main impact will be the improvement of community-based care and quality of life for people with chronic psychosis. Ultimately, the programme has the potential to have a positive impact on the quality of life of millions of affected individuals, their families and communities in both India and Pakistan.

Lay abstract: Psychosis is a serious mental illness and can be very distressing for individuals and their families. People with psychosis often have a poor quality of life. Many people do not receive the treatment they need. This is called the treatment gap . The treatment gap is greatest for low and middle-income countries, where three out of four people with psychosis cannot access appropriate care. Where individuals do receive treatment, it is often in hospital, away from their family and community. There are not enough financial resources or trained staff to provide specialised care. Therefore, low-cost approaches that different staff members can use are needed to help improve the quality of care. Our aim is to improve the quality of community-based care for people with psychosis in Pakistan and India. We aim to do this by adapting and testing a low-cost approach called DIALOG+. DIALOG+ helps people with psychosis to have a better quality of life and reduces symptoms, but it has not been tested in either country. Firstly, we will test whether DIALOG+ is acceptable to people in Pakistan and India by holding workshops with different community members, including people who work in health services, those with psychosis and their families. We will then do a small study and ask staff members to use DIALOG+ with 5 patients for three months. Participants will be asked about their experiences to help us adapt the approach. We will then carry out a larger study to test whether DIALOG+ is effective. In each country, we will include 14 staff members, including psychiatrists and support workers and 210 people, half of whom will use DIALOG+. The other half will not use DIALOG+. Participants will fill out questionnaires at the start of the study and after 6 and 12 months. We will compare the groups to see if patients receiving DIALOG+ show improvements. We will develop plans to help other services use DIALOG+ so more people can benefit from better community care. To help researchers and doctors from both countries develop their research skills, we will hold training workshops and teaching sessions. It is important to involve community members at all stages of the research and we will do this using the arts. This will raise awareness of psychosis and will help tackle discrimination against people with mental health problems. The arts projects will tell more people about our research as well as inform the research team and local medical professionals about what needs to be done. As it is important to include those who have experienced psychosis in our research, we will set up a &ldquo;lived experience advisory panel&rdquo;. They will help design the research, and ensure information is meaningful to other patients.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;6.6 PSYCHOLOGICAL AND BEHAVIOURAL;7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH