The impact of COVID-19 on people living with psychosocial disabilities in Ghana and Indonesia and priorities for inclusive recovery
Lead Research Organisation:
King's College London
Department Name: Social Science, Health and Medicine
Abstract
Context
In many poorer countries mental health is neglected and people with serious conditions like schizophrenia and bipolar disorder experience stigma and human rights abuses. In the last ten years countries like Ghana and Indonesia have worked hard to improve access to mental health services and prevent human rights abuses. People with lived experience of mental health conditions have started to talk openly about their experiences and advocate for change. Sadly, the global COVID-19 pandemic threatens to reverse this progress. Ghana and Indonesia still have few mental health services and during the pandemic it has become difficult for people to access support and care. In addition, many people with serious mental health conditions find it hard to get work and this has become even more difficult. Family caregivers, often women, may have to struggle alone without any of the usual supports from family, friends and the community. This is likely to worsen the physical and mental health of people with mental health conditions and make it harder for them to exercise their right to be included in society. This project will train people with lived experience of mental health problems in Ghana and Indonesia to work alongside the researchers to find out how the pandemic and government responses have affected people living in poor urban and rural communities. This includes how it has impacted on work, relationships, mental and physical health and access to health services and support. We will also find out what has helped people with mental health conditions during the pandemic, such as support from family, friends and religious groups. We will use this to develop guidelines on how plans for recovery from the COVID-19 pandemic can include people with mental health conditions and protect their human rights.
Aims and objectives
Aim: To understand the impact of COVID-19 on people with serious mental health conditions in Ghana and Indonesia and inform guidelines to include them in recovery plans.
Objectives:
A) We will use our research to provide evidence on the following:
i) The impact of the COVID-19 pandemic and government responses on the health, relationships, daily life and livelihoods of people with severe mental health conditions in low- and middle-income countries
ii) The consequences of the pandemic and government responses for the human rights of people with mental health conditions, including forced treatment and use of physical restraints
iii) Sources of support used by people with mental health problems and their families during the pandemic
iv) The best ways to include people with lived experience of mental health conditions in research, advocacy, and developing policies for recovery
B) To use evidence from the two countries to develop guidelines to include people with mental health conditions in plans for recovery which protect their human rights
Potential applications and benefits
This research will provide evidence on how the COVID-19 pandemic has affected people with mental health conditions and their families in poorer countries and what has helped them to adapt and recover. The findings will be used to develop a report which will be shared with policy makers, charities, mental health services and other relevant people and can be used to develop plans for recovery which take into account the needs of people with mental health conditions and their families. The training materials will be made freely available to train people with lived experience of mental health conditions as researchers. This project will provide valuable information on how to involve people with mental health conditions living in poorer countries as researchers and enable them to contribute to plans which affect them. This will help to make sure that plans and policies are relevant to the needs and priorities of the people they affect.
In many poorer countries mental health is neglected and people with serious conditions like schizophrenia and bipolar disorder experience stigma and human rights abuses. In the last ten years countries like Ghana and Indonesia have worked hard to improve access to mental health services and prevent human rights abuses. People with lived experience of mental health conditions have started to talk openly about their experiences and advocate for change. Sadly, the global COVID-19 pandemic threatens to reverse this progress. Ghana and Indonesia still have few mental health services and during the pandemic it has become difficult for people to access support and care. In addition, many people with serious mental health conditions find it hard to get work and this has become even more difficult. Family caregivers, often women, may have to struggle alone without any of the usual supports from family, friends and the community. This is likely to worsen the physical and mental health of people with mental health conditions and make it harder for them to exercise their right to be included in society. This project will train people with lived experience of mental health problems in Ghana and Indonesia to work alongside the researchers to find out how the pandemic and government responses have affected people living in poor urban and rural communities. This includes how it has impacted on work, relationships, mental and physical health and access to health services and support. We will also find out what has helped people with mental health conditions during the pandemic, such as support from family, friends and religious groups. We will use this to develop guidelines on how plans for recovery from the COVID-19 pandemic can include people with mental health conditions and protect their human rights.
Aims and objectives
Aim: To understand the impact of COVID-19 on people with serious mental health conditions in Ghana and Indonesia and inform guidelines to include them in recovery plans.
Objectives:
A) We will use our research to provide evidence on the following:
i) The impact of the COVID-19 pandemic and government responses on the health, relationships, daily life and livelihoods of people with severe mental health conditions in low- and middle-income countries
ii) The consequences of the pandemic and government responses for the human rights of people with mental health conditions, including forced treatment and use of physical restraints
iii) Sources of support used by people with mental health problems and their families during the pandemic
iv) The best ways to include people with lived experience of mental health conditions in research, advocacy, and developing policies for recovery
B) To use evidence from the two countries to develop guidelines to include people with mental health conditions in plans for recovery which protect their human rights
Potential applications and benefits
This research will provide evidence on how the COVID-19 pandemic has affected people with mental health conditions and their families in poorer countries and what has helped them to adapt and recover. The findings will be used to develop a report which will be shared with policy makers, charities, mental health services and other relevant people and can be used to develop plans for recovery which take into account the needs of people with mental health conditions and their families. The training materials will be made freely available to train people with lived experience of mental health conditions as researchers. This project will provide valuable information on how to involve people with mental health conditions living in poorer countries as researchers and enable them to contribute to plans which affect them. This will help to make sure that plans and policies are relevant to the needs and priorities of the people they affect.
Organisations
- King's College London (Lead Research Organisation)
- Sapienza University of Rome (Collaboration)
- McPin Foundation (Collaboration)
- Birkbeck, University of London (Collaboration)
- QUEEN MARY UNIVERSITY OF LONDON (Collaboration)
- Komunitas Peduli Skizofrenia Indonesia (Collaboration, Project Partner)
- MIDDLESEX UNIVERSITY (Collaboration)
- UNIVERSITY OF GHANA (Collaboration)
- UNIVERSITY OF BIRMINGHAM (Collaboration)
- Gadjah Mada University (Collaboration)
- University of Theatre and Film Arts (Collaboration)
- Mental Health Society of Ghana (Project Partner)
- Savannah Centre for Contemporary Art (Project Partner)
- Rumah Berdaya Denpasar (Project Partner)
Publications
| Title | Alhassan's story |
| Description | This short-film is the outcome of the intensive participatory video workshop facilitated by the Co-I Erminia Colucci and her Erasmus mentee Sara Haragonics held in Ghana to disseminate the preliminary research findings and collect further data. This participatory video was created and filmed by the study participants and peer-researchers. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| Impact | The film has just been completed but was already watched by over 80 participants at the conference 'Disability and Covid-19: International conference on disability and Development, Mar 2022, LSHTM London |
| URL | https://movie-ment.org/ |
| Title | God Will Protect Us: Alhassan's Story |
| Description | Participatory video co-produced with people with lived experience of serious mental illness and caregivers illustrating the impact of the COVID-19 pandemic on people with psychosocial disabilities in Ghana. Describes the impact of the pandemic on religious worship and social relationships. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2023 |
| Impact | Participatory video was shared with research participants and stakeholders in Tamale, Ghana in February 2023 and used for discussion on the role of faith in recovery and social inclusion and support needs of people living with mental illness |
| Title | Life has Tested Me: Rashida's Story |
| Description | Participatory video co-produced with people with lived experience of serious mental illness and caregivers describing experiences of the COVID-19 pandemic, the impact on livelihoods and access to treatment and care and how the person was able to access support and treatment. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2023 |
| Impact | Participatory video was shared with research participants and stakeholders in Tamale, Ghana in February 2023 and used for discussion on livelihood opportunities, family support and support needs for social inclusion of people living with mental illness |
| Title | Radio dramas |
| Description | Four radio dramas co-produced with people living with serious mental illness and writers and performers from Lododo Art and the University of Ghana in Ga, Twi and English. The dramas describe experiences of discrimination and stigma and support from friends and family |
| Type Of Art | Performance (Music, Dance, Drama, etc) |
| Year Produced | 2023 |
| Impact | The Ga language dramas were broadcast on a leading Ga radio station in Ghana followed by discussions and phone-in with the public. People with lived experience, mental health advocates and a psychologist participated in the broadcasts to provide context for the dramas and respond to questions from the public. |
| Description | New research methods - peer research and participatory video As part of this research we trained four people with lived experience of mental health conditions in each country to work as co-researchers alongside the university research team. To our knowledge this was the first time this approach had been used in Ghana and Indonesia. Through this process we learned about the potential of peer research in these contexts as well as important issues to consider, such as how to provide fair remuneration and how to support people during the research process. Peer researchers told us that they valued the opportunity to be involved in research and that they were able to show empathy and understand people's experiences from the inside. However we also learned that participatory methods need time and flexibility which is not always considered in research timelines and budgets. We learned that training was needed for both the university researchers and the peer researchers to work successfully together and provide support and adaptations when needed. We learned it is vital to consider the well-being of peer researchers and the research team as a whole and build in time for debriefing, reflection and support. There is also a risk of overburdening people as lived experience experts, particularly where there are fewer people who are open about their diagnosis and suitably qualified to act as peer researchers. We also used participatory video in this research where people with lived experience of mental health conditions and caregivers worked together to produce filmed stories to illustrate the research findings. We found that people engaged well with this method, including women who had limited literacy. The story-telling was a powerful method of conveying people's experience of the pandemic and it's impact on their lives. Partnerships with arts-based organisations This research developed a successful collaboration with an arts-based organisation in Ghana - Savannah Centre for Contemporary Art - which is based in the northern region, one of the poorest areas of Ghana. This institution had not previously engaged with issues around mental health and had very limited knowledge in this area. The partnership provided an opportunity for artists to learn more about mental health and consider how art could be used for advocacy and exploring people's experiences through arts-based methods. It also enabled people with mental health conditions to make use of the gallery spaces, promoting diversity and inclusion within arts-based organisations. Conducting training and research remotely We learned about the advantages and disadvantages of conducting international research projects remotely. Online platforms could create an equitable space for members of the research team to meet. However inequalities in internet access could disrupt this. The UK and Indonesia experienced few connection difficulties but at times the Ghana team were not able to fully take part in online sessions due to weak internet connection, particularly when in rural areas. Research findings on impact of COVID-19 The impact of COVID-19 was very different in the two contexts in terms of the spread of infection and death rates with Indonesia experiencing much higher infection, deaths and greater restrictions to control the virus. Despite these differences in both countries the pandemic had a significant impact on the cost of living and access to mental health care. People with mental illness who were already isolated experienced |
| Exploitation Route | The lessons learned from our experience of working with peer researchers and using participatory video will be of value to other researchers and civil society organisations who are considering using participatory methods. We are sharing our experiences with academics and civil society organisations through workshops, presentations and publications. The peer researchers have also made videos reflecting on their experience which will be made freely available online. The participatory videos and the summary report which is being developed will be shared with communities and stakeholders including policy makers, health managers and ministries of health to illustrate the impact of the pandemic on people with psychosocial disabilities and sources of support. This will be valuable in advocacy and campaigning for the needs of people with psychosocial disabilities to be considered in recovery planning. |
| Sectors | Communities and Social Services/Policy,Healthcare,Government, Democracy and Justice |
| URL | https://www.youtube.com/watch?v=3i-JnPDFMF4 |
| Description | We have developed the capacity of people with psychosocial disabilities to be involved in the co-production of research in Indonesia and Ghana. This is the first time that people with severe mental illness have been trained to work as co-researchers in these countries. The training materials and lessons learned from this have been shared with other researchers and the peer researchers made short videos reflecting on their experiences which have been posted online as part of the YouTube channel hosted by one of the peer researchers. The findings were shared with members of the research network to contribute towards the UN PRPD guidelines for inclusive recovery from the COVID-19 pandemic. Through co-production workshops we created participatory videos based on the study findings and lived experience narratives of people living with psychosocial disabilities and family caregivers. These have been used to engage stakeholders and the general public with the study findings on the impact of COVID-19 on people with psychosocial disabilities in Ghana and Indonesia. The participatory videos have also been widely used for training in participatory visual methods and as examples of participatory action research for students, practitioners, lived experience groups and researchers in the UK, Ghana, Indonesia and Ethiopia. The experience of training peer researchers is being used to inform participatory research training for people with lived experience in Ghana, Ethiopia and Kenya for a new NIHR project on homelessness and serious mental illness (HOPE). Since the last submission peer researchers trained through the project have been recruited as lived experience experts for a new research proposal on the use of arts for mental for mental health advocacy in Ghana and Indonesia which was funded by an AHRC network grant. The peer researchers in Ghana were also employed on an ESRC impact acceleration grant to co-facilitate a series of film screenings and discussions in three locations in Ghana (Accra, Tamale and Nkoranza) to engage participants and community stakeholders with the study findings and outputs. Two of the Ghana peer researchers also took part in a participatory research group to develop radio dramas on lived experience of mental illness with writers and performers from Lododo Art Foundation and the School of Performing Art at the University of Ghana. The dramas were broadcast on a Ga language radio station in Ghana and followed by a phone in discussion with members of the public. Peer researchers have also made active use of their research experience and the study findings and outputs in their own advocacy work, for example presenting to policy makers and practitioners at the Mental Health Authority Ghana conference on their experience as peer researchers and through social media channels. |
| First Year Of Impact | 2022 |
| Sector | Communities and Social Services/Policy,Creative Economy,Education,Healthcare |
| Impact Types | Cultural,Societal,Policy & public services |
| Description | Engaging peer-researchers in co-facilitation of participatory video workshop |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | The peer-researcher learnt new skills and those involved in the project as storytellers or audience improved knowledge and attitudes towards mental health issues and ability for people with lived experience of severe mental illness to develop and produce a short film. |
| Description | Training for research teams for NIHR HOPE project in Ethiopia, Kenya and Ghana |
| Geographic Reach | Africa |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Increased awareness of how mental health workers and healers can collaborate, improved knowledge of participatory research methods and peer research Training delivered to about 20 participants from Ghana, Ethiopia and Kenya including members of service user groups with lived experience, PhD students and early career researchers, NGO employees working in mental health |
| Description | Training of mental health peer researchers |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Description | workshops on arts-based and visual methods |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | All participants in the workshop were successful in developing and/or producing a visual project, including participatory-based. |
| Description | workshops on arts-based and visual methods in Psychology |
| Geographic Reach | Europe |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | by the end of the workshop, all participants were able to make a plan about how to integrate visual methods in an existing project they were responsible for. |
| Description | Arts and Humanities Impact Fund |
| Amount | £2,394 (GBP) |
| Funding ID | G.MRHF.0005 |
| Organisation | University of Warwick |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 07/2022 |
| End | 07/2023 |
| Description | Developing a network for mutual learning on the potential of creative arts for mental health advocacy and activism in Ghana and Indonesia |
| Amount | £87,186 (GBP) |
| Funding ID | AH/X009637/1 |
| Organisation | Arts & Humanities Research Council (AHRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2023 |
| End | 07/2024 |
| Description | ESRC Impact Acceleration Account |
| Amount | £5,812 (GBP) |
| Funding ID | G.MRHW.0701 |
| Organisation | University of Warwick |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 07/2022 |
| End | 03/2023 |
| Description | NIHR Global Health Research Group on Homeless People with severe mental illness in Africa (HOPE) |
| Amount | £1,000,000 (GBP) |
| Funding ID | NIHR134325 |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2022 |
| End | 02/2025 |
| Description | UKRI/AHRC GCRF Urgency Grants Scheme Highlight Notice for Innovation Awards / Case Studies on the Impacts of COVID-19 on Persons with Disabilities |
| Amount | £95,423 (GBP) |
| Funding ID | AH/V013548/1 |
| Organisation | Arts & Humanities Research Council (AHRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 02/2021 |
| End | 07/2021 |
| Title | Adapting participatory video methodology as research data collection and dissemination tool |
| Description | To the best of our knowledge, participatory video for mental health research had not been used in Ghana before. We developed an innovative methodological approach to work with peer-researchers to develop a qualitative analysis thematic mapping that formed the basis for developing participatory videos with the participants during a three days intensive workshop aimed to both create case studies for finding dissemination while also eliciting and collecting additional data. In Indonesia, this workshop took place in an hybrid way which was also an innovation and required further adaptations of the tool. In addition to releasing the videos at conferences and similar events and on our social media and website channels, we will write an article or book chapter to make these tools available to others. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | No |
| Impact | The three research teams (UK, Ghana and Indonesia) -comprising also (gender equal) peer-researchers with experience of mental health issues- acquired new skills including co-facilitation of participatory videos, developing a story-board and use of audio-visual equipment. |
| Title | Peer research |
| Description | Ongoing involvement with people with lived experience as researchers - they are employed as lived experience experts in 3 additional grants. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2022 |
| Provided To Others? | No |
| Impact | Increasing confidence and experience of peer researchers in contributing to research and research outputs |
| Title | Peer research |
| Description | We trained people with lived experience of mental health conditions to work as peer researchers. To our knowledge this is the first time this method has been used in Ghana and Indonesia in relation to metnal health research. This approaches improves research infrastructure by bringing peer research into mental health research in the two countries and providing evidence on the methodology, benefits and risks of this approach and training, ethical, safeguarding and support needs. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | People with lived experience of mental health conditions from Ghana and Indonesia were trained in qualitative research methods and took part in recruiting participants, conducting interviews and data analysis as well as creating case study narratives and dissemination of research findings. Mental health advocacy organisations and academic researchers in the two countries were exposed to this method, what is needed to implement this approach effectively and its benefits for mental health research and advocacy |
| URL | https://www.youtube.com/watch?v=3i-JnPDFMF4&t=1570s |
| Title | Peer researcher training materials |
| Description | Peer researcher training materials including PowerPoint presentations, peer researcher handbook and SOPs |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Peer researcher training materials shared with other researchers in the network |
| Title | Topic guides co-developed through participatory methods |
| Description | Developed topic guides to explore the impact of COVID-19 on people with severe mental illness. Topic guides were developed with input from participatory action research workshops with people with psychosocial disabilities and caregivers. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Topic guides were successfully used by research team and peer researchers to identify impacts of the pandemic on people with serious mental illness |
| Title | Participant database and qualitative research interviews |
| Description | Anonymised database of people with mental health conditions, caregivers and stakeholders in Ghana and Indonesia Interview transcripts from qualitative interviews with people with mental health conditions, caregivers and stakeholders in Ghana and Indonesia |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | No |
| Impact | Thematic analysis of interviews identified impact of COVID-19 on people with psychosocial disabilities in Ghana and Indonesia and will inform planning for inclusive recovery. Themes were used to develop narratives for participatory videos and a report which will be published and distributed. |
| Title | Participatory data analysis |
| Description | Participatory workshop to conduct thematic analysis of interviews with people with psychosocial disabilities, caregivers and stakeholders with peer researchers |
| Type Of Material | Data analysis technique |
| Year Produced | 2021 |
| Provided To Others? | No |
| Impact | This was the first time that participatory analysis of this kind has been conducted with people with psychosocial disabilities in Ghana and Indonesia. This will provide valuable lessons in this approach which can be applied in other settings. |
| Description | Academic collaboration University of Ghana |
| Organisation | University of Ghana |
| Department | Department of Psychology |
| Country | Ghana |
| Sector | Academic/University |
| PI Contribution | Recruited co-investigator and established academic collaboration with department of psychology, University of Ghana. Developed research proposal drawing on research experience in Ghana and knowledge of national and international policy relating to rights and mental health. Recruited junior researchers to work as research assistants on the project and commenced induction and training. |
| Collaborator Contribution | Professor Joseph Osafo and Dr Lily Kpobi contributed expertise gained through research with traditional and faith healers in Ghana Provided office space and access to research support at University of Ghana. |
| Impact | Development of research grant proposal, ethics approval from Ghana Health Service, engagement with local stakeholders to form advisory group. Two further successful research grant proposals submitted with Dr Lily Kpobi and Dr Sarah Dorgbazi, School of Performing Arts who co-facilitated our advisory group - please see further funding. Other collaborations with scholars at Birkbeck University |
| Start Year | 2018 |
| Description | COVID-19 disability network |
| Organisation | University of Birmingham |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have been part of a network of research teams co-ordinated by Dina Kirwan and Vera Kubenz at the School of Education at the University of Birmingham conducting participatory research on the impact of COVID-19 on people with disabilities in several countries. We have participated in regular network meetings online. We have contributed our expertise from conducting research in the contexts of Ghana and Indonesia, using participatory methods, including participatory visual and arts-based methods, and conducting research on mental health. This included methodological, ethical and safeguarding considerations, as well as cultural knowledge and local policy context. We have contributed multi-disciplinary perspectives in terms of theory and methods from anthropology, visual/arts-based methods and psychology. We shared updates on the study progress and findings and learning from the research at the network meetings. We organised an online session with four of the research teams in Zimbabwe, Uganda, Ukraine on working with people with disabilities as co-researchers as part of a case study workshop hosted by the network. We also contributed learning on conducting research during the COVID-19 pandemic and adapting methods. |
| Collaborator Contribution | Members of the research teams shared their expertise in participatory methods and conducting research with people with disabilities, including how to make research accessible for people with different disabilities and how to conduct a situation analysis. Members of other research teams shared training materials for training peer researchers which we adapted for training peer researchers from our project and we learned from the experiences of the other teams throughout the research process. We also learned from participatory arts-based methods employed by other teams and on ways to adapt our approach for conducting research with people with disabilties during the COVID-19 pandemic -for example remote data collection methods including telephone/online interviews |
| Impact | Workshop on Innovative methods for researching disability and COVID-19 in the Global South - created and facilitated a session on working with people with disabilities as co-researchers with research teams from Uganda, Ghana, Indonesia, Ukraine and Zimbabwe. Multi-disciplinary involving researchers with expertise in development, anthropology, social science, law, psychology and disability studies. Presentations with other projects on as part of the London School of Hygiene and Tropical Medicine International International Centre for Evidence on Disability conference. Multi-disciplinary as above. Contributed to development of the UNPRPD situation analysis framework led by Dr Vera Kubenz for for a disability-inclusive recovery from COVID-19 by providing comments and feedback informed by our research and expertise. Multi-disciplinary - psychology and anthropology |
| Start Year | 2021 |
| 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 Middlesex University |
| Organisation | Middlesex University |
| Department | Department of Psychology |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Developing the research proposal Introduction to research team and arts-based and NGO partners in Ghana Guidance on adapting participatory video method to the Ghanaian context Organisation of workshops and liaison with partners |
| Collaborator Contribution | Designing and facilitating participatory video workshops Co-facilitating participatory anaylsis workshops Analysis of research data Dissemination of research findings Developing research report and publications |
| Impact | Participatory videos with people with psychosocial disabilities in Ghana and Indonesia Analysis of interviews Draft of country reports and research paper Presentations at case study workshop and LSHTM ICED conference Multi-disciplinary - psychology, anthropology, participatory film-making |
| Start Year | 2021 |
| Description | Collaboration with Queen Mary University of London |
| Organisation | Queen Mary University of London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Contribution to research and debate on spirituality and mental health and understandings of mental illness and intellectual disability in Ghana, in particularly providing insights from research in Ghana and anthropological theory. Analysis and writing up of research findings Developing roundtable event on spirituality and mental health, inviting speakers from research networks Participating as speaker in roundtable event. |
| Collaborator Contribution | Funding flights and accomodation for international speakers to roundtable event in London and for analysis and writing with partners in Ghana. Leading research and debate on spirituality and mental health and understandings of mental illness and intellectual disability in Ghana, particularly based on philosophical perspectives Organisation and funding for roundtable event on spirituality and mental health Participating as speaker in roundtable event. |
| Impact | Roundtable event with international speakers to take place on 30th March 2023 - Enchanted Worlds and Human Meaning: Interdisciplinary and intercultural dialogue on spirituality and mental health Multi-disciplinary collaboration across philosophy, anthropology, psychology, religious and cultural studies |
| Start Year | 2022 |
| Description | Collaboration with University of Ghana |
| Organisation | University of Ghana |
| Department | Department of Psychology |
| Country | Ghana |
| Sector | Academic/University |
| PI Contribution | Training in working with people with psychosocial disabilities as co-researchers Training in participatory methods including participatory video Development of partnerships with civil society organisations and arts organisations in Ghana |
| Collaborator Contribution | Developing the research proposal Liaising with partners Training and mentoring peer researchers 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 | Panel for Ghana Studies Association |
| Organisation | Birkbeck, University of London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Developed a successful panel proposal on Mental Health in Ghana at a Crossroads which will be part of the Ghana Studies Association conference. Brought together researchers from my network to develop the proposal. |
| Collaborator Contribution | Each partner contributed towards the development of the panel abstract and towards abstracts based on our various research collaborations |
| Impact | Panel proposal accepted for the Ghana Studies Association conference in July 2022 Multi-disciplinary - history, psychology, anthropology |
| Start Year | 2021 |
| Description | Panel for Ghana Studies Association |
| Organisation | Sapienza University of Rome |
| Country | Italy |
| Sector | Academic/University |
| PI Contribution | Developed a successful panel proposal on Mental Health in Ghana at a Crossroads which will be part of the Ghana Studies Association conference. Brought together researchers from my network to develop the proposal. |
| Collaborator Contribution | Each partner contributed towards the development of the panel abstract and towards abstracts based on our various research collaborations |
| Impact | Panel proposal accepted for the Ghana Studies Association conference in July 2022 Multi-disciplinary - history, psychology, anthropology |
| Start Year | 2021 |
| Description | Panel for Ghana Studies Association |
| Organisation | University of Ghana |
| Country | Ghana |
| Sector | Academic/University |
| PI Contribution | Developed a successful panel proposal on Mental Health in Ghana at a Crossroads which will be part of the Ghana Studies Association conference. Brought together researchers from my network to develop the proposal. |
| Collaborator Contribution | Each partner contributed towards the development of the panel abstract and towards abstracts based on our various research collaborations |
| Impact | Panel proposal accepted for the Ghana Studies Association conference in July 2022 Multi-disciplinary - history, psychology, anthropology |
| Start Year | 2021 |
| Description | Partnership with KPSI |
| Organisation | Komunitas Peduli Skizofrenia Indonesia |
| Country | Indonesia |
| Sector | Charity/Non Profit |
| PI Contribution | Training in working with people with psychosocial disabilities as co-researchers Training in participatory video and other participatory approaches |
| Collaborator Contribution | -Support with identifying, recruiting and training peer researchers -Connecting the research team with networks and peer support groups of people with lived experience of mental illness and caregivers -Recruiting participants for interviews and workshops -Sharing expertise in effectively engaging local communities and stakeholders, including persons with experience of mental illness, families, community leaders, policy makers and traditional and faith healers, and providing introductions and collaboration through our networks -Providing advice on the legal and policy framework in Indonesia and best practices for advocacy nationally and internationally, specifically in relation to disability rights and mental health -Providing contacts with local policy makers and advice on how to communicate research findings -Providing advice on links with local media and other outlets for promoting the research to audiences in Indonesia and in the mental health/development sector -Co-facilitating workshops to co-produce the research methods and outputs -Co-producing the report and disseminating the report to relevant stakeholders |
| Impact | Peer researcher training materials Participatory analysis Participatory videos Multi-disciplinary - development, psychology, social science, participatory film-makingPeer researcher training |
| Start Year | 2021 |
| Description | Partnership with McPin |
| Organisation | McPin Foundation |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Introductions to international research teams in Ghana and Indonesia Guidance in adaptation of peer research method to context in each location, including cultural, logistical, structural considerations Support in developing and delivering training |
| Collaborator Contribution | Expert consultancy in training and safeguarding of peer researchers in Ghana and Indonesia. Advice and guidance on development of peer researcher training materials and safeguarding guidelines Input into online delivery of peer researcher training |
| Impact | Development of peer researcher training materials |
| Start Year | 2021 |
| Description | Partnership with the University of Theatre and Film Arts Budapest |
| Organisation | University of Theatre and Film Arts |
| Country | Hungary |
| Sector | Academic/University |
| PI Contribution | The project PI has established a partnership between Middlesex University and this Institution and formally take on a mentorship role for this Erasmus+ internship providing several opportunities to learn about using participatory video and other visual research approaches in mental health and human rights work |
| Collaborator Contribution | they have provided financial support for the PhD student/intern for one year. The student has worked closely with the team, under the mentor's supervision, to contribute to several visual outputs |
| Impact | Interdisciplinary (film studies, cultural psychology, medical anthropology, cultural psychiatry) - adapt participatory visual methodologies -editing ethnographic documentary footage for short-films - co-authored methodological paper drafts for publication |
| Start Year | 2021 |
| Description | 'Successful international grants application: sharing lessons with the experts' workshop at Universitas Gadjah Mada (Yogyakarta, Indonesia) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Learnings about applying and carrying out the Together for Mental Health and Covid-19 projects were shared with a broad range of audiences from across Indonesia, who had to apply the learnings by presenting a short grant proposal on a provided template. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Arts-based and visual methods workshop (14 hours) at Universitas Airlangga (Surabaya, Indonesia) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Intensive workshop aimed to learn how to use arts-based and visual method for mental health research. Participants were presented several examples of visual outputs, including from the Together for Mental Health and Covid-19 projects, and methodological informations and where then asked to apply the learning by developing and presenting a visual research group project. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Conference presentation- Disability and Covid-19 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Presentation of the methodology used by the participatory video co-facilitators (Colucci & Haragonics) during the workshops held in Ghana and Indonesia 'Using participatory video to explore stories about the impact of Covid-19 on people with psychosocial disabilities in Ghana and Indonesia' at the Disability and Covid-19: International conference on disability and Development, 15-17 Mar 2022, LSHTM London, which sparked interest on participatory video methodology in the audience. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Film screening and discussion Accra, Ghana |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Screening of documentary Nkabom: A Little Medicine, A Little Prayer at St Barnabas Anglican Church, Osu, Accra, Ghana. The event was co-hosted with Mindfreedom Ghana. 32 people attended including members of the public, church members, representatives of mental health advocacy groups, people with lived experience of mental illness, caregivers, research participants and local media. The screening was followed by a discussion which was primarily in the Ga language. This involved questions and active discussion with the audience on the potential of collaboration with healers for mental health care, protecting the rights of people with psychosocial disabilities, how to access mental health support and reducing stigma. The discussion was co-facilitated by peer researchers with lived experience who had been trained as part of our research on the impact of COVID-19 on people with psychosocial disabilities. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Film screening and discussion Nkoranza, Ghana |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | Screening of documentary Nkabom: A Little Medicine, A Little Prayer in Nkoranza, Ghana. 30 people attended including participants from the research (traditional healers, church leader, people with lived experience of mental illness, mental health workers, social worker, community philanthropist) and other stakeholders (local government, mental health workers/trainees and NGOs). The screening was followed by a discussion which was primarily in the Twi language. This involved questions and active discussion with the audience on collaboration with healers for mental health care, protecting the rights of people with psychosocial disabilities, how to access mental health support and reducing stigma. The discussion was co-facilitated by peer researchers with lived experience who had been trained as part of our research on the impact of COVID-19 on people with psychosocial disabilities. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Ghana Studies Association conference 18-20 July 2022. Panel: Mental Health in Ghana at the Crossroads |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Panel on mental health convened as part of Ghana Studies Association conference. Featured academics, students and practitioners from diverse disciplines from across Ghana and internationally Panel was co-hosted with research collaborators Dr Sarah Marks (Birkbeck) and Dr Lily Kpobi (University of Ghana) with Cecila Draicchio (Sapienza, Rome) and featured findings from several research projects. Presentations: Healing at the crossroads: Collaborations between mental health workers and traditional and faith-based healers in Ghana with Lily Kpobi (University of Ghana) Representation at a crossroads: challenges and opportunities for lived experience engagement in mental health in Ghana Therapy at the crossroads: tracing the emergence of psychological therapies in Ghana with Sarah Marks (Birkbeck) and Lily Kpobi (University of Ghana) |
| Year(s) Of Engagement Activity | 2022 |
| URL | http://ghanastudies.com/announcements/gsa-triennial-conferences/tamale-triennial/ |
| Description | Innovative methods for researching disability and COVID-19 in the Global South Workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Workshop session on working with people with disabilities as co-researchers. Featured short films made by peer researchers from the project reflecting on their experiences. Mixed audience of academics, third sector organisations and people with lived exeperience of mental illness. Part of workshop organised by GCRF network Disability Under Siege. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.eventbrite.co.uk/e/innovative-methods-for-researching-disability-covid19-in-the-global-s... |
| Description | Mad in America podcast |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Podcast for Mad In America - discussed research activities and findings, methodological and theoretical approaches, ethical issues Mad in America is a well-regarded mental health advocacy/activist group - podcast was widely shared on social media and podcast platforms (e.g. Spotify) and posted on the Mad in America Twitter feed and webpage. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.madinamerica.com/2021/08/rights-based-mental-health-social-exclusion-interview-ursula-re... |
| Description | Participatory Action Research workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Study participants or study members |
| Results and Impact | Conducted a Participatory Action workshop to engage with service users, caregivers and other stakeholders to refine the research methods and context. The participants provided information which helped to shape our approach to fieldwork and analysis. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Participatory Video workshops |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Study participants, peer researchers and research team participated in a participatory video workshop where they learned about the method, and developed case studies to produce two participatory videos about thematic areas related to the research findings |
| Year(s) Of Engagement Activity | 2021 |
| Description | Participatory video screening and discussion Tamale, Ghana |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | Screening of participatory videos co-produced with people with lived experience of mental illness and caregivers in Tamale, Ghana. 29 people attended including participants from the research (people with lived experience of mental illness and caregivers), research partners (mental health workers, BasicNeeds Ghana, Mental Health Advocacy Foundation) and other stakeholders (media representatives, psychiatrist and mental health workers, mental health volunteers/advocates, people with lived experience, caregivers). The screening was followed by a discussion with the audience. This involved questions and active discussion on the role of faith and places of worship for people with mental health conditions and their role in promoting social inclusion, how to support social inclusion through opportunities for work, how to access mental health support and reduce stigma. The discussion was co-facilitated by peer researchers with lived experience who had been trained as part of our research on the impact of COVID-19 on people with psychosocial disabilities. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Participatory video workshop with people with lived experience of mental illness and carers at Universitas Gadjah Mada (Yogyakarta, Indonesia) |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | This intensive workshop was facilitated by Erminia Colucci and a PhD candidate Sara Haragonics and funded by the Centre for Public Mental Health. Over 3 days, people with lived experience and some carers were supported in developing small groups'short films about mental health using examples and guidance from the participatory videos produced as part of the Together for Mental Health and Covid-19 projects. The workshop concluded with the screening of the resulting 4 short-films, which are owned by the participants and will be posted on the Movie-ment.org channels after approval. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presentation LSHTM ICED conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentations on participatory video workshops (including screening of first cut of a participatory video from Ghana) and on study findings on the impact of COVID-19 on mental health care to the London School of Hygiene and Tropical Medicine International Centre for Disability 6th international Conference on disability and development. This was attended by a mixed audience of people with disabilities, health practitioners, people working for disability organisations, researchers in disability, activists/advocates. The presentations were attended by peer researchers from the two countries as well as mental health practitioners. Audience members asked questions about the methods and findings and requested further information. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.lshtm.ac.uk/newsevents/events/6th-international-conference-disability-and-development-di... |
| Description | Presentation at Mental Health Authority conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation by Dr. Annabella Osei-Tutu at the 1st Mental Health conference organised by the Mental Health Authority of Ghana on the impact of COVID-19 on mental health care as well as the experience of conducting peer research in Ghana |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation for Disability and Inclusion Africa Network |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Third sector organisations |
| Results and Impact | Presentation with Lily Kpobi, Lionel Sakyi and Annabella Osei-Tutu, University of Ghana. Title: "I'm not a mad person, I have a disease': the emergence of biomedical framings of mental illness within mental health advocacy in Ghana - what is at stake?" at Alternative Explanations of Disability: Implications for Advocacy and Activism workshop organized by the Disability and Inclusion Africa Network. Engaged in online discussion with disability groups in Africa involved in the network and other participants from disabled people's organisations, researchers and advocacy groups. We have been invited to be involved in further events with the network. |
| Year(s) Of Engagement Activity | 2021 |
| URL | http://dia-network.com/ |
| Description | Radio broadcast Obonu FM |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Ga language radio dramas which were co-produced by people with lived experience were broadcast on Obonu FM, a leading Ga radio station in Ghana, followed by discussions and phone-in with the public. People with lived experience, mental health advocates and a psychologist participated in the broadcasts to provide context for the dramas and respond to questions from the public. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Radio interview |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | Radio interview with peer researcher Esenam Drah and mental health nurse Stephen Asante on commercial radio station Zaa radio in Tamale, Ghana. Discussed issues around mental health in Ghana and the topic of our research - the impact of COVID-19 on people with mental illness in Ghana and the need for an inclusive approach |
| Year(s) Of Engagement Activity | 2021 |
| Description | Radio interview |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | Conducted radio interview together with Esenam Drah, peer researcher from the project, and Stephen Asante, mental health nurse, on Kesmi FM, Tamale Ghana. Discussed issues relating to mental health in Ghana and current research findings. Active interest from the radio presenter who later attended a screening of the film Nkabom: A Little Medicine, A Little Prayer, produced through our ESRC Together for Mental Health project |
| Year(s) Of Engagement Activity | 2021 |
| Description | Radio interview at Kesmi FM |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | Attended a radio interview together with a community mental health nurse at Kesmi FM in Tamale, Ghana to discuss mental health and the impact of COVID. Also discussed the advocacy work of his local organisation. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Steering Committee meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | We formed a steering committee made up of key experts and stakeholders from different countries and expertise. The Committee provided advice, expertise in research methods, and local contextual knowledge. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Training for peer researchers |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | Conducted training on research methods and peer research for peer researchers and other research team members in collaboration with McPin Foundation. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Visual Research Method workshop at Universitas Negeri Padang (Sumatra, Indonesia) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Workshop (8 hours) on how to use visual research methods for mental health research, including presentation of methodology and key findings and screening of the films produced as outcomes of these projects |
| Year(s) Of Engagement Activity | 2023 |
| Description | What is at stake for 'social inclusion' in mental health? Learning from lived experience in Ghana and Palestine |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Presentation to academics, students and clinicians as part of online conference: Pluralising Global Mental Health: Care, Crisis and Critique, 9-10 June 2022, University of Edinburgh. Presentation was co-authored with collaborators from Ghana and Palestine. |
| Year(s) Of Engagement Activity | 2022 |