Participatory Action Research with Disabled Adolescents in Nepal (PARDAN) to develop methods and materials to understand their experience of COVID-19

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.