Participatory Action Research with Disabled Adolescents in Nepal (PARDAN) to develop methods and materials to understand their experience of COVID-19
Lead Research Organisation:
University College London
Department Name: Institute for Global Health
Abstract
Ensuring that people with disabilities are not disproportionately affected by COVID-19 is a global health priority. Intersecting vulnerabilities of disability, low socio-economic status, marginalisation and age indicate that children and young people with disabilities (CYPDs) are likely to be uniquely affected by the pandemic. Yet, there has been limited research from low-and middle-income countries (LMICs) about the effect of the pandemic on CYPDs. In order to capture their experience, it is important that they participate in the design of tools and methods to collect data. CYPDs are rarely given opportunities to participate in research beyond the role of respondent because there is poor awareness about inclusive methods and exemplary research which promotes the role of children as active participants in the research process is needed. Our collaboration of University College London, Institute of Development Studies, Kathmandu University, and Diverse Patterns will develop methods and tools to increase the participation of CYPDs in research about their experiences of the pandemic in two rural areas of Nepal.
We will review the literature, tools and guidance used to capture CYPD experience during this pandemic and other crises and convene an advisory group of disabled persons organisations (DPO) representatives to inform the development of our research. We will contact families of 12 male and female CYPDs with a range of different severe-moderate impairments through local DPOs and invite them to participate in interviews and discussions. Often caregivers speak for CYPDs and find it difficult to enable them to speak for themselves. Other young people, such as siblings or friends, often have more equal relationships with CYPDs. Therefore, we will ask the participant to identify another young person they would like to support them throughout the process, and we will train this person to be an enabler.
We will interact with CYPDs four times. (1) We will conduct interviews with young people and their caregivers to explore their experience of the pandemic, testing the use of participatory tools. Tools may include a visual timeline with stickers and picture cards, locally developed 'talking mats', a 'feelings' dice, and vignettes with picture cards. We will analyse these data and reflect on and refine the participatory methods and tools. (2) We will then discuss participants interviewing their peers about the effect of the pandemic. We will ask who the young person would like to interview, who they define as a peer and the possibility of interviewing someone they weren't familiar with. They will choose someone they would like to interview, discuss what they would ask, and practice using tools and methods (3) We will observe and support peer-interviews and then conduct a de-brief to gain feedback on the method. (4) We will conduct qualitative analysis of the data, comparing data from first and peer-interviews and comparing data from caregivers, CYPDs and peers. We will use participatory methods to feedback findings to CYPDs for validation and adjust our interpretations on the basis of this. We will discuss and consolidate lessons learned with our senior team and advisory group.
Our outputs will disseminate how COVID-19 has been experienced by CYPDs and how to conduct participatory research with CYPDs. We will co-design a film with CYPDs to communicate their experience of the pandemic and produce a training film to help develop the capacity of other organisations to conduct participatory research with CYPDs. We will conduct an international and inclusive webinar and encourage participating stakeholders to use participatory methods to collect data with CYPDs about their experience of this pandemic and other crises. This will add to the global literature about the effect of COVID-19 on CYPDs and inform the development of an inclusive response.
We will review the literature, tools and guidance used to capture CYPD experience during this pandemic and other crises and convene an advisory group of disabled persons organisations (DPO) representatives to inform the development of our research. We will contact families of 12 male and female CYPDs with a range of different severe-moderate impairments through local DPOs and invite them to participate in interviews and discussions. Often caregivers speak for CYPDs and find it difficult to enable them to speak for themselves. Other young people, such as siblings or friends, often have more equal relationships with CYPDs. Therefore, we will ask the participant to identify another young person they would like to support them throughout the process, and we will train this person to be an enabler.
We will interact with CYPDs four times. (1) We will conduct interviews with young people and their caregivers to explore their experience of the pandemic, testing the use of participatory tools. Tools may include a visual timeline with stickers and picture cards, locally developed 'talking mats', a 'feelings' dice, and vignettes with picture cards. We will analyse these data and reflect on and refine the participatory methods and tools. (2) We will then discuss participants interviewing their peers about the effect of the pandemic. We will ask who the young person would like to interview, who they define as a peer and the possibility of interviewing someone they weren't familiar with. They will choose someone they would like to interview, discuss what they would ask, and practice using tools and methods (3) We will observe and support peer-interviews and then conduct a de-brief to gain feedback on the method. (4) We will conduct qualitative analysis of the data, comparing data from first and peer-interviews and comparing data from caregivers, CYPDs and peers. We will use participatory methods to feedback findings to CYPDs for validation and adjust our interpretations on the basis of this. We will discuss and consolidate lessons learned with our senior team and advisory group.
Our outputs will disseminate how COVID-19 has been experienced by CYPDs and how to conduct participatory research with CYPDs. We will co-design a film with CYPDs to communicate their experience of the pandemic and produce a training film to help develop the capacity of other organisations to conduct participatory research with CYPDs. We will conduct an international and inclusive webinar and encourage participating stakeholders to use participatory methods to collect data with CYPDs about their experience of this pandemic and other crises. This will add to the global literature about the effect of COVID-19 on CYPDs and inform the development of an inclusive response.
Publications
Morrison J
(2023)
Adolescents with disabilities and caregivers experience of COVID-19 in rural Nepal.
in Frontiers in public health
Rohwerder B
(2022)
Describing adolescents with disabilities' experiences of COVID-19 and other humanitarian emergencies in low- and middle-income countries: a scoping review.
in Global health action
Title | Participatory Action Research with Disabled Adolescents in Nepal (PARDAN) to develop methods and materials to understand their experience of COVID-19 |
Description | Film about Participatory Action Research with Disabled Adolescents in Nepal (PARDAN) to develop methods and materials to understand their experience of COVID-19 |
Type Of Art | Film/Video/Animation |
Year Produced | 2022 |
Impact | The film is being used in teaching and in workshops and a webinar and a conference to help us describe our project and findings. |
URL | https://diversepatterns.com.np/projects/pardan |
Title | Research tools |
Description | We created picture cards, story picture cards, a family of dolls, a large fabric dice, and emotion pictures to use during interviews with adolescents with disabilities. |
Type Of Art | Artefact (including digital) |
Year Produced | 2021 |
Impact | The research tools enabled us to conduct effective research with adolescents with disabilities. We summarised the way that these tools benefited our approach in a research brief. |
URL | https://drc.edu.np/ |
Description | Please refer to our two research briefs which detail our findings for a non specialist audience: https://www.ucl.ac.uk/global-health/sites/global_health/files/research_brief_about_the_methods_we_used_english_2.pdf https://www.ucl.ac.uk/global-health/sites/global_health/files/research_brief_about_our_findings_english.pdf |
Exploitation Route | Researchers and practitioners (organisations of people with disabilities, non governmental organisations, schools, etc) can learn and be inspired about how to use creative participatory inclusive methods with adolescents with disabilities. Policy makers and programme implementers can learn how they can ensure the COVID-19 response is inclusive, and they can learn how the pandemic affected adolescents. Our scoping review presents a description of grey and published literature and recommends partnership working in order to promote disaggregated reporting of results (to ensure the adolescent experience is understood) and to promote rigor in the conduct and reporting of research, in particular the publication of research in peer-reviewed journals. |
Sectors | Communities and Social Services/Policy,Education,Environment,Healthcare,Government, Democracy and Justice,Culture, Heritage, Museums and Collections |
URL | https://www.ucl.ac.uk/global-health/research/z-research/pardan |
Description | Our findings have been used to promote the use of inclusive participatory creative methods in research with adolescents with disabilities. |
First Year Of Impact | 2022 |
Impact Types | Societal,Policy & public services |
Title | participatory tools |
Description | Picture cards, story picture cards, emotions chart, a family of dolls, a soft fabric dice |
Type Of Material | Improvements to research infrastructure |
Year Produced | 2022 |
Provided To Others? | Yes |
Impact | We have made a film showing how these tools were used, and provided contact information for supplies of these tools on our website https://drc.edu.np/ |
URL | https://drc.edu.np/ |
Title | Participatory Action Research with Disabled Adolescents in Nepal (PARDAN) to develop methods and materials to understand their experience of COVID-19: a scoping review protocol |
Description | A scoping review protocol |
Type Of Material | Database/Collection of data |
Year Produced | 2021 |
Provided To Others? | Yes |
Impact | This enabled us to demonstrate rigor in a scoping review. |
URL | https://osf.io/2gqyr/ |
Description | Co-organisation of a workshop about doing research with children with disabilities |
Organisation | Queen Mary University of London |
Department | People's Palace Projects |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | We have co-designed a workshop on conducting research with children with disabilities. |
Collaborator Contribution | We have co-designed a workshop on conducting research with children with disabilities. |
Impact | The output is a workshop. |
Start Year | 2022 |
Description | Disability Under Siege |
Organisation | University of Birmingham |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Members of our research team attended meetings and presented our research progress, as well as commented on documents produced by the University of Birmingham on the UNPRPD. |
Collaborator Contribution | The University of Birmingham convened a group of researchers who were working on participatory research with people with disabilities in the global south under a research consortium called 'disability under siege'. |
Impact | A workshop is being organised to disseminate and discuss findings of members of the consortium. Mary Wickenden, Joanna Morrison and Sagar Prasai are running a workshop on working with organisations of persons with disabilities, and Joanna Morrison and Insha Pun are running a workshop on research with disabled children. |
Start Year | 2021 |
Description | Advisory committee meetings with organisations of persons with disabilities to disseminate our findings and obtain feedback on our research |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Other audiences |
Results and Impact | Six advisory committee members from different organisations of people with disabilities gave us feedback at three key points during our research. At the design phase, the implementation phase and the dissemination phase. We disseminated and discussed our scoping review of the literature with them, and our findings. They participated in our webinar to discuss interpretations and recommendations. |
Year(s) Of Engagement Activity | 2021,2022 |
Description | Lecture on disability and COVID-19 at Vree university in the Netherlands |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Postgraduate students |
Results and Impact | Mary Wickenden gave a lecture to MA students at Vree University in the Netherlands about disability and COVID-19. She showed the film that we produced about our research and discussed our findings with students. |
Year(s) Of Engagement Activity | 2022 |
Description | Presentation about about COVID and Disability related research at IDS - Institute for Development Studies - 2nd March 20200 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Postgraduate students |
Results and Impact | Online seminar focussing on 3 COVID and Disability studies in different countries, including SA study and PARDAN. Individual presentations on each study and then a Q and A covering all studies and the similarities across the findings despite different contexts and methodologies. Implications for policy and practice across countries. |
Year(s) Of Engagement Activity | 2022 |
Description | Presentation at conference - 6th International Conference on Disability and Development: Disability and COVID-19 14th March 2022 |
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 | We presented our research using film and discussion. The presentation title was: Talking to Nepali adolescents with disabilities and their peers about COVID-19 using participatory, creative and inclusive methods There was a lot of interest in the question and answer session. |
Year(s) Of Engagement Activity | 2022 |
Description | Presentation of film and research methods at the UN Resident Coordinators Office in Nepal |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Joanna Morrison presented the project and research methods using the film and presentation at UN House in Kathmandu. The objective was to inspire those managing research teams working with marginalised and hard to reach groups to plan more inclusive methods. |
Year(s) Of Engagement Activity | 2022 |
Description | Presentation of the film PARDAN to colleagues at internal meeting |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | the film from PARDAN was shown and discussed at in-week |
Year(s) Of Engagement Activity | 2022 |
Description | Teaching on Masters in Child Rights at Institute of Education - children with disability and rights. |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Postgraduate students |
Results and Impact | The case study of PARDAN was used to help students understand how children can participate in research. |
Year(s) Of Engagement Activity | 2022 |
Description | Webinar - dissemination of results |
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 | This webinar was to disseminate results of our research and to discuss the methods that we used to promote disability inclusive participatory research with adolescents. This sparked questions and discussion and interest in using participatory inclusive methods. As a result of the webinar,we have been invited to present at UN to promote the use of participatory creative and inclusive methods in research and programming. |
Year(s) Of Engagement Activity | 2022 |
URL | https://diversepatterns.com.np/projects/pardan |
Description | Workshop about doing research with children with disabilities on 4th March 2022 as part of Disability Under Seige 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 | We partnered with Peoples Palace projects to conduct a workshop about doing research with adolescents with disabilities. We showed the film and the factors that made the research a success. Insha Pun and Joanna Morrison presented. |
Year(s) Of Engagement Activity | 2022 |
Description | Workshop about working with organisations of people with disabilities - 4th March 2022 as part of Disability Under Seige 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 | Sagar Prasai and Joanna Morrison ran a workshop about how they engaged with organisations of people with disabilities through our advisory committee. We presented the keys to our success and one of our advisory committee members also presented based on her experience. |
Year(s) Of Engagement Activity | 2022 |