Developing a network for mutual learning on the potential of creative arts for mental health advocacy and activism in Ghana and Indonesia
Lead Research Organisation:
UNIVERSITY OF ESSEX
Abstract
This project will create a network of researchers, artists and people with lived experience of mental illness in Ghana, Indonesia and the UK to explore the potential of creative arts to support advocacy and activism. Mental illness can be very disabling and people living with mental illness can experience discrimination, stigma and exclusion in areas such as education, work and housing. They can also be subjected to human rights abuses such as chaining. Creative arts including poetry, music, and drama, can be successful in engaging people in social issues, such as human rights and mental health, and campaigning for change. However there has not been much use of the arts in mental health advocacy in low-income countries and we don't know which methods and approaches will work best in different settings.
It is important that people living with mental illness are included in decisions that affect them and enabled to participate in a meaningful way in research and advocacy. We will start with three meetings with people living with mental health conditions in Ghana and Indonesia to give time and space to develop trust and enable an open discussion to find out what are their problems, priorities and needs. This will include talking about difficult issues and listening to different points of view. We will take special care to make sure that people who are more disadvantaged, such as people with severe mental health conditions or who have difficulties reading or writing, are supported to participate.
After these meetings we will hold two more meetings with the group and with artists in each country. In these meetings artists will learn about the experiences of people living with mental illness in their country and explore how creative arts could be used for advocacy. They will discuss the preferred language and images to be used and ways to keep people safe and protect their mental health and confidentiality. In the second meeting they will experiment with different creative arts to see which work best to support safe open conversations and deepen understanding.
Finally we will hold a two-day workshop for mental health advocates, artists and researchers from the three countries to meet face-to-face in Indonesia. We will invite the group of people with lived experience of mental illness who took part in the meetings in Indonesia as well as stakeholders, such as caregivers, health workers, community groups and policy makers to the workshop. In these discussions we will share what we have learned during the group discussions in each country and identify the opportunities and barriers to including people with mental illness and promoting their rights in each country. During the workshop we will use creative arts to help people listen to each other across different levels of power and social status, ask questions and reach decisions.
During the visit to Indonesia we will launch the network and our website. Our aim is to include more people from different countries in the network and to develop activities using the arts for mental health advocacy together. We will write papers, hold webinars and seminars and advertise the network on social media and radio and television in each country. We will write guidelines based on what we have learned which can be used by people with lived experience and their families, artists, researchers, and activists who want to use arts in advocacy to promote the rights of people living with mental illness.
It is important that people living with mental illness are included in decisions that affect them and enabled to participate in a meaningful way in research and advocacy. We will start with three meetings with people living with mental health conditions in Ghana and Indonesia to give time and space to develop trust and enable an open discussion to find out what are their problems, priorities and needs. This will include talking about difficult issues and listening to different points of view. We will take special care to make sure that people who are more disadvantaged, such as people with severe mental health conditions or who have difficulties reading or writing, are supported to participate.
After these meetings we will hold two more meetings with the group and with artists in each country. In these meetings artists will learn about the experiences of people living with mental illness in their country and explore how creative arts could be used for advocacy. They will discuss the preferred language and images to be used and ways to keep people safe and protect their mental health and confidentiality. In the second meeting they will experiment with different creative arts to see which work best to support safe open conversations and deepen understanding.
Finally we will hold a two-day workshop for mental health advocates, artists and researchers from the three countries to meet face-to-face in Indonesia. We will invite the group of people with lived experience of mental illness who took part in the meetings in Indonesia as well as stakeholders, such as caregivers, health workers, community groups and policy makers to the workshop. In these discussions we will share what we have learned during the group discussions in each country and identify the opportunities and barriers to including people with mental illness and promoting their rights in each country. During the workshop we will use creative arts to help people listen to each other across different levels of power and social status, ask questions and reach decisions.
During the visit to Indonesia we will launch the network and our website. Our aim is to include more people from different countries in the network and to develop activities using the arts for mental health advocacy together. We will write papers, hold webinars and seminars and advertise the network on social media and radio and television in each country. We will write guidelines based on what we have learned which can be used by people with lived experience and their families, artists, researchers, and activists who want to use arts in advocacy to promote the rights of people living with mental illness.
Organisations
- UNIVERSITY OF ESSEX (Lead Research Organisation)
- UNIVERSITY OF SUSSEX (Collaboration)
- University of Ghana (Collaboration)
- Gadjah Mada University (Collaboration)
- Middlesex University (Collaboration)
- KPSI (Community Care Schizophrenia Ind) (Project Partner)
- Psychosocial Africa (Project Partner)
- Lododo Art Foundation (Project Partner)
Publications
Tizaa HL
(2025)
Lived experience in mental health research in Ghana and Indonesia: What have we learned?
in PLOS mental health
Related Projects
| Project Reference | Relationship | Related To | Start | End | Award Value |
|---|---|---|---|---|---|
| AH/X009637/1 | 01/02/2023 | 01/01/2024 | £87,187 | ||
| AH/X009637/2 | Transfer | AH/X009637/1 | 02/01/2024 | 30/07/2025 | £48,326 |
| Description | In this project we explored how to involve people with lived experience in mental health advocacy in Ghana and Indonesia in ways which are safe and inclusive and the potential of creative arts for mental health advoacy in these settings. This is particularly important given the stigma, discrimination, exclusion and human rights abuses which are experienced by people with mental illness in both countries. We successfully established two groups of people with lived experience of mental illness in Ghana and Indonesia. These groups were mainly comprised of women, particularly in Ghana, which suggests a need to adapt approaches to engage more men. In both groups participants expressed feelings of solidarity and safety within the group, and appreciation of the opportunity to share their experiences with others who had also experienced mental illness. They were also able to establish boundaries around what they did and did not wish to share. We learned valuable lessons in creating safe spaces, understanding and meeting safeguarding and support needs, and how to make sure activities were inclusive and adapted to people's different needs and abilities. Meetings between the groups of people with lived experience and artists (some of whom also have lived experience of mental health conditions) enabled exchange of learning between artists and people with lived experience from Ghana, Indonesia and the UK. The meetings also provided opportunities for people to use arts to share and discuss aspects of their experience first within the group and later with stakeholders. The activities for this project strengthened links and mutual learning between research teams, people with lived experience and artists in the UK, Ghana and Indonesia. Artists, people with lived experience and researchers from the UK and Ghana travelled to Indonesia to take part in activities to engage stakeholders with what had been learned through the meetings with people with lived experience and artists. We held webinars with artists with lived experience from Ghana, Indonesia and the UK to share experiences of using their art for advocacy and learn from each other. These have been recorded to share internally across the lived experience groups. In March 2024 we launched our network on Arts for Mental Health Advocacy (AMHA) and have gained interest from people in several countries. We have continued to work with lived experience peer researchers from Ghana and Indonesia, some of whom were originally trained to work on our previous AHRC funded project. This has enabled them to increase their skills in research and advocacy and expand their international networks. Through this project we enabled mutual learning on using creative arts to facilitate dialogue, advocacy and activism to promote inclusion and participation of people with psychosocial disabilities in two ODA recipient countries, Ghana and Indonesia. We established a network between the two countries and the UK and have increased the capacity of people with lived experience of mental illness to use creative arts to engage in dialogue and advocacy in ways which are safe and inclusive. Through engaging people from Ghana and Indonesia we have made steps towards diversifying participation within mental health advocacy, however we were limited by resources to be able to expand this to include people who are the most marginalised, for example people who have little education or who live in remote areas. |
| Exploitation Route | An exhibition in Ghana and/or Indonesia and UK to engage the public with the value of creative methods for mental health advocacy and develop exchange between artists and people with lived experience in these settings. We are particularly keen to link people and artists with lived experience of mental illness with Ghanaian heritage in the UK with artists and people with lived experience in Ghana and held an initial meeting with the Bethlem Gallery and curators and artists in Ghana to explore these ideas. |
| Sectors | Communities and Social Services/Policy Creative Economy Education Healthcare |
| Description | Societal and economic impact: This award has been primarily targeted at enhacing capacity for mental health advocacy in ODA recipient countries using participatory creative arts. Our findings are primarily aimed for use by people with lived experience of mental illness, families, third sector organisations/NGOs, healthcare workers and other stakeholders. To date through the project we have supported advocacy with local government stakeholders in Indonesia by hosting a meeting on 16th March 2024 between provincial government representatives, stakeholders (social services, mental health services etc.) and people with lived experience of mental illness. We aimed to hold a similar meeting in Ghana, subject to acquiring additional funds but have so far been unsuccessful in funding applications. We will be holding a roundtable on arts and mental health at the Ghana Studies Conference in July 2026 at Kwame Nkrumah University of Science and Technology, Kumasi, Ghana featuring people with lived experience and artists. We have enhanced the confidence and capacity of people with lived experience of mental illness in both countries, including women, to take part in advocacy and their involvement is increasingly being taken up in government and multi-agency meetings on mental health. We have learned valuable lessons on safeguarding and inclusive practice when working with people with lived experiece of mental health conditions. We have worked with peer researchers from the project and our earlier UKRI award to publish a paper describing what has been learned through the process of implementing peer research, particularly in low-income settings, and recommendations for other researchers. Several peer researchers have been involved in disseminating findings from the network, for example presenting at local meetings, workshops and conferences. Peer researchers are involved in co-facilitating training on working with people with lived experience in mental health research. SDGs: These activities are contributing towards meeting SDG 3 Health and Wellbeing, SDG 8 Decent Work, SDG 11 Reduced inequalities and SDG 16 for peace, justice and strong institutions. Enhancing mental health advocacy in the two countries and beyond will help to promote greater inclusion of people with serious mental illness and support their economic and social participation in their communities. This will in turn enhance the health and well-being of people with mental illness and their families. As well as using creative activities for advocacy, members of the lived experience group have reported directly beneficial effects of engaging in creating activities and meeting with others who share similar experiences. They report that this has helped to reduce feelings of isolation and brought people together to support one another in advocacy activities. Gender: We have involved women in our activities both in the lived experience groups and the research team. Indeed women are over-represented with our research teams in Ghana, Indonesia and the UK consisting almost exclusively of women. This is important in building capacity since in Ghana and Indonesia there is significant gender inequalities with men dominating leadership positions in research and mental health non-governmental organisations. We have noted that fewer men are involved in the lived experience groups which suggests that more work is needed to address the impact of mental health stigma which may be higher among men in both countries due to stereotypes of masculine strength and societal pressures on men to be seen as strong providers. |
| First Year Of Impact | 2023 |
| Sector | Communities and Social Services/Policy,Education,Healthcare |
| Impact Types | Societal |
| Description | Postgraduate teaching in research methods |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Developed knowledge and skills in research methods for health professionals and global public health PG students. Some will use participatory methods for research in the NHS. |
| Description | Co-production for ethical, theoretically informed ethnography: short course and network development |
| Amount | £30,000 (GBP) |
| Funding ID | GHR CADA-R3-013 |
| Organisation | National Institute for Health and Care Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 06/2024 |
| End | 03/2025 |
| Description | Developing a strategic approach to expand and diversify lived experience peer support for marginalised communities |
| Amount | £276,473 (GBP) |
| Funding ID | KPT 25_26_R2 |
| Organisation | Innovate UK |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2026 |
| End | 03/2028 |
| Description | Erasmus partnership scheme |
| Amount | € 5,000 (EUR) |
| Organisation | Eotvos Lorand University |
| Sector | Academic/University |
| Country | Hungary |
| Start | 08/2026 |
| End | 08/2027 |
| Title | Co-production of academic publication with lived experience researchers |
| Description | We have co-authored a publication with lived experience researchers from Ghana and Indonesia on the experiences of peer researchers across two research programmes. The title of the publication is: Lived experience in mental health research in Ghana and Indonesia: What have we learned? The publication outlines lessons learned through the process and recommendations for researchers preparing to work with peer researchers, particularly in low- and middle-income countries. The publication has been favourably reviewed for publication in PLOS Mental Health and is currently being revised. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2025 |
| Provided To Others? | Yes |
| Impact | The lessons learned are being used to inform training on ethical and safeguarding concerns for including people with lived experience in ethnographic research as part of an NIHR Global Health Research Cohort Academic Development Award (CADA) for which Ursula Read is co-Investigator. Peer researcher Mr Hannan Legend is a member of the lived experience advisory group for the NIHR Global Health Research Group on homelessness and mental health in Africa (HOPE) for which Ursula Read is PI and a member of the working group for the CADA project. |
| Title | Lived experience peer research |
| Description | Ongoing involvement with people with lived experience of mental illness from Ghana and Indonesia as researchers - they are employed as lived experience experts in research, evaluation and engagement activities in Ghana and Indonesia. They also working with the research team to co-produce research outputs including academic publications, guidelines, conference presentations and public engagement events. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Increasing confidence and experience of peer researchers from DAC listed countries in contributing to research and research outputs. We have adapted methods used to train peer researchers in other DAC countries (e.g. with SUCCEED in Nigeria and Uganda) to our work with lived experience researchers in Ghana and Indonesia. Lessons learned from training and working with peer researchers in Ghana and Indonesia have been applied to other projects where people with lived experience of mental illness are part of the research team, including the NIHR Homelessness and Mental Health in Africa project (HOPE). This includes approaches to working more equitably with people with lived experiences and considerations for safeguarding and ethics. Training materials which were used for training the peer researchers were also adapted for use on HOPE. |
| Title | Participatory arts-based methods with people with lived experience of mental illness |
| Description | We have experimented with various participatory arts-based methods to research lived experience of mental illness, promote understanding and advocate for social inclusion and human rights. This includes film, drama (including radio drama), music, dance, visual arts, batik, poetry and spoken word. We have explored the relevance of different methods in different cultural contexts in Ghana and Indonesia. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Radio dramas were broadcast to audiences on a popular local Ga language radio station in Ghana followed by a phone-in with members of the public. The dramas were broadcast on Obonu FM for a show focused on disability rights and inclusion which is on air during the peak drive-time. Various experts in mental health including people with lived experience, psychologists, mental health NGO workers took part in the phone-in to answer listeners' questions. Participatory videos which described lived experience of mental illness in Ghana and Indonesia have also been played to diverse audiences including members of the public and policy makers. Lessons learned through the use of these participatory arts-based methods have been as used as teaching and training materials for students of psychology, medicine and global health and research teams in several countries (e.g. as part of NIHR HOPE in Ethiopia, Ghana and Kenya, global health students at Warwick Medical School). |
| Description | Collaboration with Centre for Public Mental Health, Universitas Gadjah Mada |
| Organisation | Gadjah Mada University |
| Country | Indonesia |
| Sector | Academic/University |
| PI Contribution | Developing research partnership, building on research collaboration for ESRC Together for Mental Health project. Training and mentoring in working with peer researchers and participatory video |
| Collaborator Contribution | Developing the research proposal Training, supervising and mentoring peer researchers Working with local advocacy organisations to identify suitable peer researchers Liaising with partners Organisation and facilitation of workshops Organisation of field work Data collection - recruitment, consent, interviews Supervision of research team Data analysis Writing reports and papers Presenting research findings |
| Impact | Participatory workshops Participatory videos Training and workshops for peer researchers Conference presentation - London School of Hygiene and Tropical Medicine ICED Workshop as part of COVID-19 and disability network and short filmed interview on experiences of working as a researcher Multi-disciplinary - participatory film, psychology and social science |
| Start Year | 2021 |
| Description | Collaboration with Institute of Development Studies, University of Sussex, UK |
| Organisation | University of Sussex |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We are part of the group of AHRC Disability Inclusive Sustainable Global Development Networks which is led by Stephen Thompson at the IDS, University of Sussex. Agus Sugianto, a lived experience expert from Indonesia, attended a meeting of the network and we are contributing to meetings and discussions with Dr Thompson and members of the network. This includes planning a face-to-face meeting for ECRs in the network which will be attended by ECRs from Ghana and Indonesia in our research group. |
| Collaborator Contribution | Stephen Thompson is organising the network and hosted a face-to-face meetings for PIs in Sussex in December. He is leading planning for the ECR meeting and other activities of the network. |
| Impact | Agus Sugianto, lived experience researcher, Indonesia, participated in the meeting of ECRs in the network in January 2024. He established connections and shared his learning needs and ideas for professional development with other ECRs in the network. This was multi-disciplinary involving researchers in disability, geography, art, social sciences etc. |
| Start Year | 2023 |
| Description | Collaboration with Middlesex University, UK |
| Organisation | Middlesex University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Leading on development of research proposal Co-developing creative outputs and public engagement activities Leading development of international network on using arts in mental health advocacy Co-authoring academic papers |
| Collaborator Contribution | Co-development of research proposal - co-investigator, Prof Erminia Colucci Link to collaborators at the Centre for Public Mental Health, Universitas Gadjah Mada Co-development of creative outputs and public engagement activities Participation in network on using arts for mental health advocacy Introduction to experts in creative practice in mental health, for example as members of the project steering committee Co-authoring academic papers |
| Impact | British Academy grant funding for writing workshops attended by peer researchers and co-led with Dr Lily Kpobi, University of Ghana A Visual Symphony for Global Mental Health - performance for stakeholders in Indonesia (March 2024) Meeting with local parliament and stakeholders in Yogyakarta, Indonesia and presentation of lived experience narratives by people with lived experience of mental illness. Multi-disciplinary collaboration - psychology, anthropology |
| Start Year | 2023 |
| Description | Collaboration with Universitas Gadjah Mada, Indonesia |
| Organisation | Gadjah Mada University |
| Country | Indonesia |
| Sector | Academic/University |
| PI Contribution | Leading on development of grant proposal Planning of lived experience group meetings Planning for performance and workshop in Indonesia Link to collaborators and partners in the UK and Ghana Training in academic writing Co-production of papers for publication |
| Collaborator Contribution | Co-development of grant proposal Recruitment, planning and facilitation of meetings of lived experience group and artists Recruitment of artists Links to collaborators and partners in Indonesia Planning and organisation of public creative performance and meetings with stakeholders in Indonesia. Contribution of funds to extend reach of engagement activities Co-faciliation of academic writing workshop Co-production of papers for publication |
| Impact | Meetings of lived experience group and artists, co-development of creative outputs Visual Symphony for Mental Health performance Advocacy event at local parliament, Yogyakarta Funding for academic writing workshop This collaboration was initially established in 2018 for an earlier UKRI award (Using collaborative visual research methods to understand experiences of mental illness, coercion and restraint in Ghana and Indonesia ES/S00114X/1) and has been continued and strengthened through our subsequent AHRC and British Academy grants. |
| Start Year | 2023 |
| Description | Collaboration with University of Ghana |
| Organisation | University of Ghana |
| Country | Ghana |
| Sector | Academic/University |
| PI Contribution | Leading on development of grant proposal Connection with UK partners Planning for lived experience group meetings and Indonesia workshop Planning and co-delivery of writing workshop |
| Collaborator Contribution | Co-development of grant proposal Recruitment, planning and facilitation of lived experience group meetings Connection of lived experience group with artists from Lododo Art Foundation/University of Ghana School of Performing Arts Participation in visit to Indonesia and meetings with lived experience group in Indonesia with lived experience advocate, Esenam Drah |
| Impact | Visual Symphony for Mental Health, performance in Yogyakarta, Indonesia Formation of lived experience group, co-production of creative outputs Multi-disciplinary collaboration - arts, psychology, social sciences Collaboration with the University of Ghana was initially established by Dr Read in 2016 for research funded by ERC and has been continued and strengthened through subsequent Wellcome Trust, UKRI and British Academy grants. |
| Start Year | 2023 |
| Description | Meeting of lived experience group Ghana |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Meeting of lived experience group in Accra Ghana on 28/03/25. Attended by Julie Repper, CEO Imroc and Lesley Hill, art therapist, Queen Margaret University. Feedback on engaging in the project and discussion on peer support and future activities. Led to engagement of a group member in peer support training with Imroc and drafting of a blog. |
| Year(s) Of Engagement Activity | 2025 |
| Description | Seminar Centre for Global Health and Intersectional Equity Research, University of Essex |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | Invited seminar presentation 27/05/25 for postgraduate students, researchers and teaching staff at the University of Essex and visiting researchers for the Centre for Global Health and Intersectional Equity Research Title: Exploring the potential of creative arts for mental health advocacy in Ghana and Indonesia Presentation by Ursula Read and Lily Kpobi reporting on use of creative methods in research Attendance approximately 40 persons - led to questions from the audience and engagement with students and researchers on using creative methods in research |
| Year(s) Of Engagement Activity | 2025 |