Get interesting insights from our PIECEs teams from India and Pakistan on various aspects of our projects:
Onaiza Quershi, Co-I PIECEs from the Pakistan, explains what PIECEs is
Dr Lakshmi Venkatraman, C0-I PIECEs from India, talks about using DIALOG+ to improve mental health outcomes for people with psychosis in both settings
Dr Padma Ramachandran, Co-I PIECES from India, tells us about the use of theatre to engage communities in mental health dialogue and discussion
Sadam, one of the members of our Pakistan’s lived experience advisory panel, shares his experience of being a part of LEAP and PIECEs
Our PIECEs Research featured in the Media – “A story of their own: people with lived experience of mental illness on their journey so far”
On the occasion of World Mental Health Day, our team SCARF in Chennai, India organized an event where individuals who have experienced mental illness explained how they overcame the stigma through treatment and support.
Read more about their inspiring journey here: https://www.thehindu.com/news/cities/chennai/a-story-of-their-own-people-with-lived-experience-of-mental-illness-on-their-journey-so-far/article67404305.ece/amp/.
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.
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.
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.
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
We are excited to have our Trial published at BMC Trials this month!
You can read the full published protocol here
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.
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+).
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.
The trial was registered prospectively on the ISRCTN Registry: ISRCTN13022816 on 9 February 2022.
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