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

确保残疾人不受新冠肺炎的不成比例影响是全球健康优先事项。残疾、社会经济地位低、边缘化和年龄等相互交错的脆弱性表明，残疾儿童和青年很可能受到这一流行病的独特影响。然而，来自低收入和中等收入国家(LMIC)的关于大流行对CYPD的影响的研究有限。为了获取他们的经验，重要的是他们要参与设计收集数据的工具和方法。儿童发展中心很少有机会参与被调查者以外的研究，因为对包容性方法的认识不足，需要开展模范研究，以促进儿童在研究过程中发挥积极参与者的作用。我们与伦敦大学学院、加德满都大学发展研究所和多元化模式的合作将开发方法和工具，以增加青年发展基金对尼泊尔两个农村地区大流行经验的研究。我们将回顾用于捕捉在此次大流行和其他危机期间的CYPD经验的文献、工具和指南，并召集一个由残疾人组织(DPO)代表组成的咨询小组，以告知我们的研究进展。我们将通过当地的DPO联系12名患有一系列不同严重至中度障碍的男性和女性青少年儿童的家庭，并邀请他们参与采访和讨论。照顾者经常为儿童发育不良者代言，并发现很难让他们为自己说话。其他年轻人，如兄弟姐妹或朋友，往往与CyPD有更平等的关系。因此，我们会要求参与者找出另一位他们愿意在整个过程中支持他们的年轻人，我们将培训此人成为推动者。我们将与青年发展基金进行四次互动。(1)我们将与年轻人及其照顾者进行访谈，探讨他们在疫情中的经历，测试参与性工具的使用。工具可能包括带有贴纸和图片卡的视觉时间表，当地开发的“会说话的垫子”，一个“感觉”骰子，以及带有图片卡的小插曲。我们将分析这些数据，反思和改进参与性方法和工具。(2)然后我们将讨论参与者就大流行的影响采访他们的同龄人。我们会问年轻人想采访谁，他们把谁定义为同龄人，以及采访他们不熟悉的人的可能性。他们将选择他们想要面试的人，讨论他们要问的问题，并练习使用工具和方法(3)我们将观察和支持同行面试，然后进行汇报，以获得对方法的反馈。(4)我们将对数据进行定性分析，比较第一次访谈和同伴访谈的数据，并比较照顾者、儿童发展中心和同伴的数据。我们将采用参与式的方式将调查结果反馈给青年发展中心进行验证，并在此基础上调整我们的解释。我们将与我们的高级团队和咨询小组讨论和总结经验教训。我们的成果将传播青年团如何体验新冠肺炎，以及如何与青年团进行参与性研究。我们将与青年发展部共同设计一部电影，以交流他们对疫情的经验，并制作一部培训影片，以帮助发展其他组织与青年发展部进行参与性研究的能力。我们将举办一次国际性和包容性的网络研讨会，并鼓励参与的利益攸关方使用参与性方法，与青年发展基金一起收集有关他们在这场流行病和其他危机中的经验的数据。这将增加有关新冠肺炎对社区发展影响的全球文献，并为制定包容性应对措施提供信息。

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.