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
‘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
First Impressions as an Observer: Arts Workshops as part of PIECEs Research
*written by Hufsa Sarwar – PIECEs Research Coordinator in Pakistan
Pakistan has a rich history of arts and drama, however, even in 2021 theatre as an art form has not been able to integrate into the mainstream entertainment circles. It has unfortunately either been associated with taboo ideas and behaviours, or is available to a few privileged groups in society. Knowing this, I felt extremely apprehensive about organising Theatre of the Oppressed workshops – a new concept within mental health – for healthcare providers, caregivers, and people with lived experience of psychosis. Even if they agreed to be a part of the sessions, would they be able to leave behind their inhibitions and play with us while sharing their personal stories?
Healthcare workers during Theatre of the Oppressed Arts Workshops
Convincing our desired demographic to attend the workshops proved to be a long and gruelling process. People were unable to comprehend how games and exercises would help with furthering the understanding of the experience of psychosis in Pakistan. Thankfully, we were able to enrol a sufficient number of participants from each of the three groups, and kicked off the first set of workshops with psychiatrists and psychologists. Contrary to my expectations, the seemingly serious healthcare providers broke away from the confines of their professions, and took part in the games without reservations, sharing poignant stories and experiences from their clinical work. Led by our Arts partners from IRC (Interactive Resource Centre), some of the images created showed their struggle with burnout, lack of availability of support staff at hospitals, the importance of family counselling, and the great need for support groups for caregivers of people with psychosis. We received positive feedback from all the healthcare providers, who shared that they were usually so entrenched within their daily routines and structures that they were unable to view the experiences of patients and caregivers from the different perspective that Theatre of the Oppressed provided.
We decided to hold workshops with caregivers and people with psychosis together in the same room due to challenges around attendance. These individuals surprised me with how generous they were with their stories and challenges, and how brilliantly they communicated through the games and exercises. Initially, the caregivers exhibited some resistance; however, once they saw their family members and others with psychosis enthusiastically taking part in the activities, they decided to loosen up as well. Most participants with psychosis shared that they expected to feel better after these workshops, and that they wanted to learn something new. Most caregivers said they were there because of their family member, and wanted to learn how to better support them. By the end of the second day, the entire group came together and constructed powerfully evocative images of being restrained by their family members when experiencing active symptoms of psychosis, the challenge of seeking care at overburdened hospitals, the overwhelming responsibility and subsequent stress faced by caregivers, and the need for increased empathy and understanding of the condition.
The stories and experiences that our participants shared have opened up a myriad of questions around the challenges faced by those living with psychosis, their family members, as well as the healthcare providers who work with them. We hope to work with these stakeholders to further develop these stories, and bring them to the wider community to raise awareness and increase acceptance and understanding of psychosis in Pakistan.
To finalise, read the impressions from Dr. Faiza Rehman, Psychiatrist at Jinnah Postgraduate Medical Centre (JPMC), regarding her participation on the Arts Workshops:
I registered for the workshop with a lot of curiosity, to be honest. It was almost serendipitous for me that art forms were being utilised in the management of mental health. Although this isn’t a new concept, it is now not only being implemented in Pakistan but is also within reach. It was a thoroughly refreshing experience and I will take the liberty to say that I was there partly to cater my own cravings for performing arts and being able to be of some help for others, in that process, was a double fold joy in itself. Although the moderating team and my fellow participants met each other for the first time, the bond that was formed between them and the experience gained was such a positive one – probably due to the goodness of intent and nobility of the cause that brought them together. The workshop helped us see the small details of patient care and even the perspectives of a caregiver that might get neglected in the routine hassle of managing the patient. With a lot of heartfelt wishes for the team managing this project I look forward to more such activities and would be eager to be a part of them in the future.
First Impressions: Using DIALOG+ in PIECEs pilot phase
*written by Dr. Padmavati Ramachandran, Co-Investigator on PIECEs and Director at Schizophrenia Research Foundation (SCARF)
Psychosocial interventions, that impact recovery for persons with psychosis, are contingent upon several aspects – the person with psychosis, family, the care provider, available resources and in all likelihood, the passage of time! Hence, development of a new comprehensive intervention in the field of psychosocial interventions is in itself a challenge and testing the intervention even more so.
The DIALOG + an intervention designed to promote better patient-clinician interaction, brings in a structure to the conversations in routine clinical interactions. Being a part of the team piloting the tool at SCARF, it became very clear, right at the outset that tool was actually facilitating a dialogue with the patient that would not just improve conversation , but also facilitate a solution focussed discussion.
The first participant, a 43 year old women, was someone I have occasionally met in clinical encounters. She would always complain that she had a lot to speak about – but the doctors were so busy in the OPD, that she didn’t think it was right for her to take more time. The first session with the app – actually left her feeling that she was listened to – in her own words “l feel that for the first time – I have said all that has been bothering me in terms of my functioning” And, she adds, “you have spoken to me and not my husband… that makes me feel even better”
One interesting observation with the third participant was something that I least anticipated. In the domain related to Job situation – the participant a home maker, spontaneously stated that her action plan would be to learn to create an email id for herself – so that she can apply for jobs. This was something that was never picked up during clinical interactions! Similarly, a male participant who works as a tailor, who wanted to feel more energetic – reported that he could exercise and we then engaged in a discussion of what he could do to exercise. He left the session , saying that he liked the idea of exercising – an activity that he had not thought of before!
The experience of handling a gadget – the tablet in this case – is a very new experience, even for me as a clinician! While I do use the electronic medical records system for client data storage, using the tablet as a medium to communicate to the client is quite a task, especially when the participant is not very familiar with using the electronic medium. But as I realised over the next few sessions , it was a matter of practice.
The app driven technology is very user friendly and simple. This enables the participant to be able to read and relate easily to the visual analogue scale. The use of the Tamil language has made the interaction even more suitable! There are of course, sections that will need adaptation to the Indian lifestyle and the PIECES project aims to do just that!
Overall, I feel pretty excited at using this tool – it has brought in a structure to a patient centric engagement, meaningful enough to hopefully improve on functioning.
Alongside with Dr. Padmavati’s first impressions in India, in Pakistan Dr. Aneela Mushtaq , clinical psychologist at hospital Karwan-e-Hayaat, gives her account of the experience with the intervention so far:
Since I have started using DIALOG+, I have found this exceptional intervention, convenient for both therapist and patient; reliable, time-saving and specific in targeting the main issue which is causing distress. It helps both therapist and patient to understand problems in more depth. Before, both sides had to do a lot of paperwork during psychotherapy sessions, however ever since I have started utilising DIALOG+ in my therapy sessions, my paperwork has noticeably decreased. If I talk about my patients’ views regarding DIALOG+ – according to them it is very easy to work with the instrument, and they can easily highlight the core issue which is the main source of problems. Previously both the therapist and the patient needed to take part in four to five sessions to come to the conclusion of the main problem, as normally either we are doing it verbally or performing some paperwork for clear understanding. Furthermore, another very effective part of the intervention is the action plan. This option helps to form smart goals for the rest of the week: patients have to achieve those goals while working on it.
To understand more about DIALOG+ and how it’s used, please access the official website