Empowering Voices: Service Users Lead the Way at IConS XI 2024 – A Groundbreaking Dissemination of PIECEs Project
At the recent IConS XI 2024 conference, the PIECEs Project of SCARF (Schizophrenia Research Foundation) made a significant mark by showcasing their groundbreaking work. What made this dissemination particularly unique was that the service users themselves played a central role, actively engaging with delegates to explain the project’s various components.
As one walked into the exhibit space, the atmosphere was alive with interaction and conversations, but what truly stood out was seeing the service users confidently leading discussions. These individuals had been involved in different parts of the project, and now, they were in charge of presenting them. Whether it was the Randomized Control Trials (RCTs), Quality Improvement Workshops, or more creative aspects like the SALT (Stimulate/Share, Appreciate, Learn, and Transfer) workshops and the innovative use of community engagement through the Theatre of the Oppressed, the service users took ownership of their narratives. They eloquently explained each aspect, from the Namma Area initiative (a social hangout space for service users) to the visually powerful Photovoice Exhibit, engaging visitors with insights that only someone with lived experience could offer.
As part of their presentation, they didn’t just speak to the delegates—they also asked thought-provoking questions. These questions weren’t just about the project but aimed to spark deeper reflection among the visitors, such as how they might involve service users in their workplace settings, an idea that emerged from the service users. This exchange turned the exhibit from a one-way dissemination into an interactive, reflective dialogue.
When asked about their personal experience participating in the dissemination, the service users spoke of how transformative it had been. For many, it was the first time taking up a leadership role in such a public forum. They shared how explaining the project, answering questions, and even presenting challenges faced by people with mental health conditions had a profound impact on their self-esteem. This involvement, they said, boosted their confidence and gave them a renewed sense of purpose, showcasing not only their knowledge but also their resilience.
The PIECEs Project presentation wasn’t just about sharing information it was a living example of empowerment. It gave a voice to those who are often spoken for, and in doing so, it highlighted the importance of including service users in mental health initiatives. Through their participation, the service users transformed from beneficiaries to advocates and leaders, leaving both themselves and the delegates with a lasting impression of the true power of lived experience.
Highlights from the PIECEs Presentation at RC Psych Congress, Edinburgh
On June 19th, the PIECEs team presented at the RC Psych Congress in Edinburgh. The program began with a warm welcome from Professor Paul and Victoria Bird, Principal Investigators for PIECEs. They highlighted the significant work that IRD and SCARF have done in India and Pakistan to engage communities in mental health discussions.
The presentation featured a glimpse into the Theatre of the Oppressed, which illustrated the common challenges and opportunities in community engagement across these diverse regions.The team also used “The Great Game of Power” to prompt the audience to reflect on the key stakeholders and the role of oppressors within these communities. This interactive segment sparked meaningful conversations and allowed participants to share their perspectives.The session concluded with insights from representatives in India and Pakistan, followed by an open Q&A. The evening showcased the power of dialogue, creativity, and shared learning, leaving everyone inspired and eager for future collaboration.
Just published: PIECEs Health Economics Analysis Plan
We are pleased to share the updated document with our Health Economics Analysis Plan. We’ll be using this methodology to measure cost-effectiveness of our DIALOG+ trial. The economic analysis will be led by our Co-I, Dr Ashar Malik (Aga Khan University).
You can read our plan here.
Join Us on World Schizophrenia Day: A Day in the Life of “Dastan”
On World Schizophrenia Day, we invite you to step into the world of “Dastan” – a user-led theatre team in Karachi, Pakistan that is breaking the stigma surrounding psychosis. Through powerful storytelling, Dastan has been reshaping perceptions and challenging misconceptions about mental illness.
Watch here:
The Power of Waiting Room Theatre
In the vibrant waiting room of the Schizophrenia Research Foundation (Scarf) in Chennai, India, a transformative initiative unfolds as patients and caregivers take the stage in impromptu theatre performances. Through collaborative dialogue and creative expression, this initiative not only challenges stigma but also fosters understanding and compassion within the community. Read more about how SCARF’s waiting room theatre serves as a catalyst for meaningful conversations on mental health:
Namma Area: Celebrating Two Years of Empowerment and Community Engagement
On May 24, 2024, our team in India, SCARF, celebrated the second anniversary of Namma Area, an extraordinary event led and organized by individuals with lived experience of psychoses.
For those unfamiliar with this concept, “Namma” is a Tamil word for “Our,” and Namma Area means “Our Space.” This innovative space for individuals with psychoses or any mental health issues embodies autonomy, freedom, ownership, and responsibility. It promotes socialization and recreation through activities like games, movies, reading, and visits to places such as museums or parks. Initiated two years ago under the aegis of the PIECEs project, supported by an NIHR grant, Namma Area has served as a vital platform for engaging communities. The anniversary event, held at Vani Mahal in the heart of Chennai, showcased the remarkable talents of the service users in theatrics, dance, and a dramatic depiction of the space, with the highlight being a powerful panel discussion. The panel featured individuals with lived experience who shared how being part of Namma Area had significantly impacted their lives
The panel featured individuals with lived experience who shared how being part of the Namma Area had significantly impacted their lives. One poignant moment came when a young woman, responding to a question about whether her symptoms interfered with stage performance, said, “New learning pushes back any symptom that I would experience – that is the power of this space.” Answering a family member requesting transport to Namma Area, another panellist was quick to respond, “It is our desire to open more spaces in several parts of the city – this will allow lots of people to be part of the space”
These heartfelt exchanges highlighted the immense value of lived experience in shaping effective mental health initiatives. The director of Scarf mentioned that, as mental health professionals, we have much to learn from those with firsthand knowledge. The day is not far when individuals with psychoses will advocate for what they want and how they want it, paving the way for more inclusive and supportive community spaces.
Namma Area’s second anniversary was a celebration as well as a testament to the power of collective community efforts in fostering mental well-being.
Scaling up DIALOG+in Karachi, Pakistan
In a concerted effort to improve mental healthcare in Karachi, three Dialog+ sessions were recently held across Karachi’s prominent hospitals, conducted by the IRD Team. Commencing on March 8 at the Karachi Psychiatric Hospital, the initiative brought together mental health professionals to engage in conversations about using DIALOG+. Subsequent sessions were held at Lady Dufferin Hospital on April 19 and Jinnah Postgraduate Medical Centre on April 27th to offer individuals a safe platform to learn about DIALOG+.
Community Engagement Initiative: Forum Theatre at MMM Nursing College, Chennai
Our community engagement initiative, conducted by the mixed arts group at SCARFindia, involved delivering forum theatre performances and workshops at the MMM Nursing College in Chennai. This initiative provided an excellent platform for students to engage in discussions regarding challenges in mental healthcare. Additionally, students had the opportunity to interact with service users and members after the session, fostering a deeper understanding of mental health issues within the community.
Empowering Healthcare Professionals: Scaling Up DIALOG+
In the fast-paced world of healthcare, innovation is key to improving patient care and outcomes. One such innovation making waves is DIALOG+, a platform designed to enhance communication and collaboration among healthcare professionals. As we approach the end of the trial phase, our teams are ramping up efforts to scale up the use of DIALOG+, empowering clinicians through comprehensive training sessions. Recently, the Interactive Development and Research Team in Pakistan took strides in this endeavour by conducting training sessions at Karwan-e-hayat and Karachi Psychiatric Hospital. These sessions were about fostering a deep understanding of its potential and integrating it seamlessly into routine practices.
At the heart of these sessions were meaningful discussions about the continued utilization of DIALOG+ in everyday clinical workflows. The aim was to equip healthcare professionals with the skills and knowledge needed to leverage this platform effectively. Through interactive sessions, clinicians explored the various features of DIALOG+ and learned how it could streamline communication, enhance collaboration, and ultimately improve patient care. By streamlining communication processes and reducing administrative burdens, clinicians will devote more time to patient care, enhancing patient and provider satisfaction.
As we continue scaling up DIALOG+, our commitment remains unwavering: to empower healthcare professionals with the tools they need to deliver quality mental healthcare. Through ongoing training and support, we are not just transforming workflows; we are revolutionizing the way healthcare is delivered, one interaction at a time.
Statistical Analysis Plan (SAP) for PIECEs
As we approach the end of this trial, the teams have worked to develop a statistical analysis plan to measure the impact of PIECEs. Read here: Statistical Analysis Plan for PIECEs