PIECEs Research Teams Reunite: A Week of Empowerment and Collaboration in the UK
After a remarkable year of conducting Randomized Control Trial (RCT) and dedicated efforts in mental health awareness, the PIECEs Research Teams from Pakistan and the UK came together for an enriching week of capacity building in London. With a shared commitment to improving mental healthcare for people with psychosis, the teams reunited to discuss their accomplishments, plan for the future, and engage in collaborative activities that promise to bring positive change to communities in need.
For the past year, the PIECEs teams in India and Pakistan have been diligently working on the six-month follow-up of the trial while engaging their communities and service users through the transformative power of the arts, notably the Theatre of the Oppressed. In Karachi, Pakistan, the team at Interactive Research and Development (IRD – Pakistan) is collaborating with Karwan-e-Hayat and Jinnah Postgraduate Medical Centre, making strides in psychiatric treatment, rehabilitation services, and mental health awareness. While in India, the Schizophrenia Research Foundation (SCARF – Chennai, India) is leading the trial with the partner – EVAM. A significant achievement last year was the launch of small-scale research grants, aimed at enhancing the capacity of early career researchers. Proudly, the teams revealed that ten projects are already underway in their respective countries.
Day 1: Setting the Stage
The week began with enthusiasm as team members gathered at Queen Mary University’s Mile End campus in London.
The first day was all about reflecting on the past year’s achievements and charting out plans for the year ahead. Teams also discussed the economic, political, and climate-related challenges they had faced and the strategies they used to navigate those challenges.
Day 2: Strategic Planning and Community Engagement
The second day was filled with strategic planning sessions and engaging activities. Pakistan and India teams came together to review their arts and community plans for the coming year, create a timeline, and identify tasks for developing these activities. The day took an exciting turn with a session led by Raj Bhari, an expert in conflict resolution and participatory arts, who brought a wealth of knowledge to the table, enriching the teams with innovative community engagement strategies.
The day continued with a session led by Ali Campbell, a pioneer in Theatre of the Oppressed. The interactive workshop provided profound insights into applying this approach in practical contexts. The previous blogs had already discussed how art had been used to engage communities in India and Pakistan, making this session a fitting continuation of their work.
Day 3: Capacity Building and Learning Exchange
Day three focused on capacity building, led by Katherine Brittin on quality improvement. The session equipped the teams with valuable tools for enhancing the quality of their systems and conducting process evaluation, as a next step of PIECEs.
Teams took the opportunity to learn from each other’s experiences, sharing the ideas they could use to ensure the quality improvement of the project.
Later in the day, the teams spent some time reflecting on their experiences of setting up a five-year-long research project. They delved into the challenges and strengths, contemplating how this journey challenged their beliefs about mental health and empowered individuals with lived experiences.
Day 4: Sharing Insights and Celebrating Achievements
On the fourth and final day, the teams had a series of captivating events planned. One of the principal investigators for the small-scale research grants shared her research findings, where individuals with lived experiences of mental health expressed their stories of psychosis and recovery through art.
For instance, a photograph of a simple cup of tea became a powerful symbol of comfort, and affection, demonstrating the profound impact of loved ones on recovery for people with psychosis.
The event reached its climax with captivating theatre performances by the India and Pakistan teams, offering a glimpse of their remarkable artwork in these countries. These performances ignited extensive discussions about the impact of art on communities in these countries, the process of recognizing the oppression, as well as the newfound sense of empowerment that people with lived experience of psychosis have experienced in expressing themselves.
The Future Ahead
As the week concluded, the teams engaged in thoughtful discussions about implementing their interventions, making them sustainable, and exploring fundraising opportunities. They also outlined their next steps for the year, driven by their shared passion to improve mental health services globally.
The PIECEs Research Teams’ visit to the UK was not just a gathering of like-minded individuals but a testament to their dedication to transforming mental healthcare for people with severe mental illness and raising awareness in their communities. Their commitment to research, community engagement, and the innovative use of performing arts promises a brighter future for mental health in Pakistan, India, and beyond. This united effort shows that when teams collaborate and share their strengths, remarkable progress can be made in the field of mental health.
Community Involvement: an interview with PIECEs Theatre group participant Isaac Indrias
Clinical nurse Isaac Indras have spent most of his life supporting other’s people health but, in recent years, an early diagnosis of psychosis impacted his wellbeing in all spheres of his professional, social and personal life. More than support found in formal medical treatment, Isaac was searching to engage in different ways with other people facing the same issues, and hopefully have open conversations about mental issues. During his treatment, he started connecting and engaging with the PIECEs theatre group, led by IRD Pakistan. The programme is part of the user involvement activities the PIECEs team have been leading alongside the main research trial.
Both in India and Pakistan, mixed groups formed by people with lived experience of severe mental illness, carers, healthcare workers and artists have been working together to open a channel of communication, action and change through the applied arts workshops and and performances. Our mains goals are:
- To give a voice to people with psychosis and their experiences, highlighting their potential as well as their needs
- To enable local communities to better support and address the needs of people with psychosis
- To identify and mobilize community resources
- To create a more open and inclusive debate about mental illnessBelow you can read more about Isaac experience while joining the theatre team.
Could you tell us about yourself, a bit of your story and mental condition?
My name is Isaac, and I am 36 years old. I am a medical staff nurse. A few years ago, I found that I was not feeling well. My
mental state was not well. I’ve started to hear voices, some were against me, and they were trying to abuse me. Some voices were awful to me. There were many stubborn voices – they kept teasing me. My mind was not feeling normal – it felt like it was speaking and thinking by itself, creating illusions and delusions. This is what I had to bear until I got help…
Did your condition have any impact on other aspects of your life?
My condition affected both my personal and professional life. When I was working, I could not fully concentrate on the task at hand, and further, the voices kept disturbing me. Many things kept happening, but I tried my best to focus on my work and do it perfectly, even though the voices were extremely disturbing. In my personal life, my brain was suffering from burn out, and I was so stressed that I could not think properly. I felt unfortunate and hopeless.
How did you hear about the PIECEs theatre team, and what made you want to join it?
I heard about the theatre team from my physician at Jinnah Postgraduate Medical Centre (one of PIECEs main clinical partner in Pakistan). I had gone to her for my routine checkup, and she told me the theatre team was set up to create awareness about severe mental illness, and how to deal with psychosis patients in different ways. People with psychosis are often mistreated, lack extra-curricular activities, not supported by the government, and financially troubled…
My doctor advised me to join the theatre team. What made me join the team is that a few IRD (PIECEs main Research lead in Pakistan) members who were part of the team described how the team works and how it would effectively benefit the society. It was very fascinating, so I decided to join.
What did you think about the work, and how did you feel after joining the team and training?
I initially thought that the team would perform a familiar show which had been shown in theatres previously, but it was very different from that. The idea was to perform using the Theatre of the Oppressed methodology in society. (Theatre of the Oppressed is an interactive theatre form used worldwide for social and political activism, conflict resolution, community building, therapy, and government legislation). It transforms the traditional monologue between actors on a stage into a dialogue which ask audience members – spectators – to help and interact with us, they actively deal with oppression in their real lives and we start a conversation.
For people who do not correctly grasp information through debates, lectures, and reading books, theatre can easily convey the message. This fascinated me.
Has being in the arts company impacted your life?
Through the theatre group, I have found new friends who I can freely debate with, discuss my problems, and plan the future work of the company and our projects. I have found working in the arts group very helpful.
Theatre Group preparing before a performance in a healthcare centre
Is there a message you would like to share with others?
I would like to convey a message to those who facilitate patients suffering with psychosis. Please be empathetic towards these patients, sometimes people think they are speaking nonsensically and are useless to society. In my professional life, I have sometimes seen that people with psychosis are mistreated in hospitals and other places. This situation has to improve. If we encourage people with psychosis, I believe we can bring about a change. Patients with psychosis are often in another ‘time zone’, which gives them the ability to think and create. They are known to perform better in creative work. We could approach employers and request them to offer such work. It will be helpful and the society will benefit as well. These therapies can lead them towards sustainable professions, and we can also learn from their output. Therefore, my message is: please handle patients with compassion.
Performance at Bus Station to mark World Schizophrenia Awareness Day
Here are some images of last week in Chennai, India, where our team from SCARF performed in one of the busiest bus stations in the city to raise awareness and reduce stigma around severe mental illness. The event marked the World Schizophrenia Awareness Day and it’s part of PIECEs Community Engagement Strategy.
The group of performers, formed by artists, healthcare workers, social workers and lived experienced members, were joined by an impromptu audience at the Thiruverkadu Bus Station!
#mentalhealth #mentalhealthawareness #streetart #streettheatre #research #india #chennai
PIECEs Trial Protocol paper published!
We are excited to have our Trial published at BMC Trials this month!
You can read the full published protocol here
Abstract
Background
Severe mental illness (SMI) presents a major challenge worldwide, affecting approximately 5–8% of the world’s population. It causes significant distress to affected people, families and wider communities, generating high costs through loss of productivity and ongoing healthcare use. Over 75% of patients with psychosis receive inadequate care and experience a negative financial impact and reduced quality of life (QoL). It is therefore a priority to reduce the treatment gap by providing low-cost, effective interventions for people with psychosis.
Our research project, PIECEs, is designed to explore, adapt and test a low-cost, approach (DIALOG+) that makes use of existing resources to improve community-based care for patients with psychosis. The research will be conducted in two urban sites: Karachi, Pakistan and Chennai, India. DIALOG+ is a novel, technology-assisted and resource-oriented intervention, based on QoL research, concepts of patient-centred communication, IT developments and solution-focused therapy. However, the approach has not been rigorously tested within India and Pakistan. Our randomised controlled trial (RCT) aims to test the effectiveness and cost-effectiveness of DIALOG+ in improving the QoL and clinical outcomes for individuals with long-term psychosis being treated in the community in India and Pakistan.
Methods
To assess the acceptability, feasibility, and cost effectiveness of DIALOG+, we will conduct a cluster RCT with 210 patients and 14 clinicians in each country. The intervention will be used during a routine interaction between a clinician and a patient. It consists of a patient-centred assessment (the DIALOG scale) whereby the clinician invites the patient to rate their satisfaction with different life domains and treatment aspects, which forms the active control group. The intervention group will follow this up with a four-step solution-focused approach to identify the patient’s resources and develop solutions to deal with the patient’s concerns (DIALOG+).
Discussion
If shown to be effective DIALOG+ has the potential to improve community-based care and the QoL for millions of people within India and Pakistan who experience psychosis.
Trial registration
The trial was registered prospectively on the ISRCTN Registry: ISRCTN13022816 on 9 February 2022.
SCARF: PIECEs 2023 Arts Calendar
Our partners SCARF just launched a very special deliverable as part of the community engagement and strategy plan for PIECEs: the 2023 Arts Calendar, featuring the beautiful work produced by service users throughout the past year.
Through the use of creative and arts research methods, we have been engaging with service users and involving individuals in as Lived Experience Advisory Members in our research. Using arts as a tool for community engagement, dissemination, raising awareness, reducing stigma and building a bridge that connects people with SMI, healthcare workers, care givers, policymakers and the general audience into dialogue about this overlooked, underrepresented and difficult subject to discuss.
In January 2023, the calendar was launched with an event open to the public at SCARF’s headquarter, in Chennai, and the calendar will be distributed to the wider community. To view the complete calendar, click here
Announced! Selected applications for Small Scale Research Grants – India
We are pleased to announce the selected applications that will be funded via our Small Scale Research Grant Scheme in India
The PIECEs Small Scale Research Grant (SSRG) is an initiative for building research capacity and community engagement development within the ‘Improving outcomes for people with psychosis in Pakistan and India – enhancing the Effectiveness of Community-based care (PIECEs) research program*.
This grant scheme will be locally administered SCARF and will act as support fund to individuals or collectives who work as academics, students, researchers, program implementers, health workers, clinicians and advocates who support or work in Mental Health, Arts and Community Engagement and Mental Health Evaluation.
“It is a long path for mental health professionals with research interest to become experienced in research and be successful in applying for grants. The small scale research grant is a great opportunity for young researchers to gain this unique experience at this early stage of their career”, comments PIECEs Principal Investigador in India and Director at SCARF, Dr R Padmavati, endorsed by Co-Investigator Dr Lakshmi Venkatraman: “we are delighted that NIHR and PIECEs are supporting the young researchers through this . It has been very gratifying to see the amazing innovative ideas that have come in from the young researchers. We are looking forward to seeing the research outputs of these awardees”.
Funding disbursed in India and Pakistan for this programme is £25.000 per country. SCARF, our lead partner in India, received over open the scheme to early career researchers working within SCARF programmes and associated partners in Chennai. After being anonymised, analysed and scored by an independent panel, a total of five applications will be funded on the scheme.
According to Professor Victoria Bird, Lead Investigator on PIECEs Research the richness of the proposals made it difficult make the selection. “There were so much variety of promising new projects and research emerging on the topic of severe mental illness. We are very much looking forward to work collaboratively with the selected applicants to build capacity and nurture knowledge, and together achieve impact as wide as possible”.
See below the selected projects, which will be developed in the course of the next year. Participants will be fully supported by the PIECEs Research and Management teams to develop capacity around project management, reporting procedures and good clinical practices and any further training needed to deliver projects at the highest standards.
Congratulations to all the selected projects!
- Using Photovoice to empower persons with psychosis: A pilot study from a LAMI country
Project Lead: Kasthuri Divya G.
With increasing evidence supporting participatory approaches in research, the study aims to pilot photovoice- a well-researched methodology that has been used as a community-based tool, in a mental health service user population at the outpatient department of SCARF, India.
The study will be executed in 4 phases, with the aim of finding out whether photovoice can bring about a positive change through empowering persons with psychosis. This process will include recruitment and training of participants to communicate through photographs, as well as evaluation assessments. The study intends to evaluate the impact of photovoice as a participatory tool that facilitates subjective documentation of the lived experience of psychosis.
- Acceptability and feasibility of UPSIDES peer support model
Project Lead: Ms. Sonia Sims
The proposed project aims to assess the acceptability and feasibility of a peer support model – UPSIDES. Although the UPSIDES model has been piloted and is being implemented in different parts of the world, including Gujarat, India, this study is a first-time exploration of using peer support volunteers in our setting. The different sociocultural aspects of the study setting warrant an exploration of facilitators and barriers to implementing a peer support model. This is achieved by this pilot study through quantitative and qualitative assessments that will shed light on the process and outcomes of using the UPSIDES model. Regular debrief sessions with the PSVs will keep the researchers informed about the utility of the UPSIDES workbook as a tool to drive recovery-oriented conversations.
Notes from these sessions will also help in course correction of the UPSIDES model. UPSIDES being a flexible and adaptable model can benefit from the learnings gained through its implementation and can be customised to better suit the study setting. As a long-term outcome, possibilities to integrate peer support into the mental health system at the tertiary care center will be explored using the experience gained through the implementation of the UPSIDES model.
- ADEPT Project – Of the people, for the people, by the people: Development of an Advisory board for Experience-enriched service and research in Psychosis Treatment
Projetc Leads: Priyadharshni B , Krishna Priya K, Jagadeesan Settu, Amritha P, Greeshma Mohan, Vijaya Raghavan
The proposal aims to develop an advisory board manual for people with early psychosis by involving people with lived experience, caregivers and other relevant stakeholders as the board members and to assess the developed manual. The underlying principle of the proposed protocol is to use the participatory action research approach and we aim to involve end-users i.e., the patients of first episode psychosis and their caregivers at all stages of the study.
- Use of Theatre of Oppressed methods to provide a voice for People with Psychosis
Project Lead: Manikandan Pari
Psychotic illnesses such as Schizophrenia or Bipolar Disorder (BD) are a group of conditions that are categorised as severe mental disorders. The impact of the conditions is determined by various factors, not just the absence of specific symptoms or disorders in people living with psychiatric problems but by a multifaceted social process in which people are devalued and discredited because of a stereotyped social status or personal characteristic.
This study attempts to use the Theatre of the Oppressed to engage persons with psychoses, providing them with a platform to express their experiences, view these from several different perspectives and possibly work through the change to enable recovery. TO is a form of popular participatory community-based strategy that uses theatre as a tool for critical thinking and transformation. It is now used worldwide for social and political activism, conflict resolution, community building, therapy, and government legislation, through supporting and developing interactions with the audience. Participating in community-based theatre will also provide opportunities for social interaction and advocacy work.
- Operational research to evaluate Namma Area, an in-operational service for the persons with mental illnesses, using mixed method approach
Project lead: Dr (Major) Karthikeyan P R, Epidemiologist
The proposal intends to evaluate the ‘Namma Area’, a hangout space, the first of its kind established within the premises of SCARF (I), for people with mental illnesses, as part of community engagement. The evaluation is intended to be carried out adapting Operational/implementation – research methods using Pragmatic Robust Implementation Sustainability Model (PRISM) & RE-AIM evaluation framework. PRISM & RE-AIM framework has been adopted because the framework in itself designed to be used at all stages of research/program/policies/interventions from planning through evaluation and reporting and across different settings using both quantitative and qualitative approaches.
RE-AIM framework is often considered as ‘gold standard’ for decision making and guidelines. The elements of RE-AIM follow a logical sequence, beginning with adoption and reach, followed by implementation and efficacy or effectiveness, and finishing with maintenance.
*This research is funded by the National Institute for Health Research (NIHR) via its Research and Innovation for Global Health Transformation (RIGHT) programme. Grant number NIHR200824, using UK aid from the UK Government to support global health research. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK Department of Health and Social Care.
Selected Applications In Pakistan! Small Scale Research Grants
We are pleased to announce the selected applications that will be funded via our Small Scale Research Grant Scheme in Pakistan
The PIECEs Small Scale Research Grant (SSRG) is an initiative for building research capacity and community engagement development within the ‘Improving outcomes for people with psychosis in Pakistan and India – enhancing the Effectiveness of Community-based care (PIECEs) research program*.
This grant scheme will be locally administered by IRD Pakistan and will act as support fund to individuals or collectives who work as academics, students, researchers, program implementers, health workers, clinicians and advocates who support or work in Mental Health, Arts and Community Engagement and Mental Health Evaluation. “The SSRG initiative invests in innovative ideas for equitable and effective access to mental health care by the next generation of early career researchers from Pakistan and India“, points out Onaiza Qureshi, PIECEs Program manager in Pakistan
Funding disbursed in India and Pakistan for this programme is £25.000 per country. IRD, our lead partner in Pakistan, received over 100 applications from 26 different cities including: Abbottabad, Attock, Bahawalpur, Buner (Hangu), Chakdara (lower dir), Chitral, District Jaffarabad, Gharo, Gilgit Baltistan, Islamabad, Kandhkot (District Kashmore), Karachi, Lahore, Rawalpindi and Gujranwala, Larkana, Layyah, Mansehra, Mardan, Multan, Peshawar, Quetta, Sakhar, Tharparkar, Sindh and Thatta.
After being anonymised, analysed and scored by an independent panel, a total of six applications will be funded on the scheme. According to Professor Victoria Bird, Lead Investigator on PIECEs Research the richness of the proposals made it difficult make the selection. “There were so much variety of promising new projects and research emerging on the topic of severe mental illness. We are very much looking forward to work collaboratively with the selected applicants to build capacity and nurture knowledge, and together achieve impact as wide as possible”.
See below the selected projects, which will be developed in the course of the next year. Participants will be fully supported by the PIECEs Research and Management teams to develop capacity around project management, reporting procedures and good clinical practices and any further training needed to deliver projects at the highest standards.
Congratulations to all the selected projects!
*This research is funded by the National Institute for Health Research (NIHR) via its Research and Innovation for Global Health Transformation (RIGHT) programme. Grant number NIHR200824, using UK aid from the UK Government to support global health research. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK Department of Health and Social Care.
‘Namma Area’: An Innovative hangout space for mental health service users at SCARF
* by Manikandam Pari, Research Assistant at PIECEs Research
Namma Area is an innovative hang-out space for people in treatment for mental illness across Chennai. It was inaugurated in May 2022, as a part of the celebrations of the World Schizophrenia Day by the SCARF team, alongside Mr Paul Heritage, Professor of Drama at Queen Mary University of London and Director at People’s Palace Project, UK. Ms Mariana Steffen, Arts Project Manager and Ms Renata Peppl, Programme Manager, PIECEs Project, also joined the occasion. The presence of Namma Area is advertised through social media, posters, and pamphlets for the local public in Chennai and at SCARF.
It is currently functioning two days a week, on Tuesdays and Thursdays, between 2 pm and 6 pm on SCARF premises. It’s aimed to be a safe space for service users to develop activities as they wish, creating a sense of autonomy and ownership.
Namma Area (which means ‘Our Space’ in Tamil) started with indoor games like chess, carrom board, and other board games. The users choose the activities themselves. for example, if they want to exercise, Bike exercise machine was made available. It provides an excellent opportunity to socialize and gradually start interaction within each other.
In the early stages, people visited out of curiosity and became interested and kept coming to the space to see what it was about and gradually more people started to use the space. Some users who have been regularly coming have started to become more comfortable with themselves and others around them. The users gather for monthly review meeting to discuss use of the space and suggestions on what they want for the next month.
In the first meeting, some of the users requested to have indoor plants, play music, books and magazine in regional language Tamil. Over time, the interactive activities and games in that space will increase based on their suggestions.
We aim to evaluate the development of Namma Area and the patterns of use after Namma Area has been in existence for atleast 6 months. It will be interesting to understand the types of people who use the space and how the space is perceived and governed by the users.
In the pictures illustrating this post, you can enjoy some of the drawings made by service users and images of other activities participants are engaged in while hanging out at Namma Area.
Paper Published: Frontiers of Psychiatry
We are happy and pleased to share PIECEs first paper publication: Implementing psychosocial interventions within low and middle-income countries to improve community-based care for people with psychosis—A situation analysis.
You can read the full piece on the Frontiers of Psychiatry website here
