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

尼泊尔残疾青少年参与性行动研究 (PARDAN) 旨在开发方法和材料来了解他们对 COVID-19 的经历

• 批准号: AH/V013459/1
• 负责人: Joanna Morrison
• 金额: $ 11.16万
• 依托单位: University College London
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2021
• 资助国家: 英国
• 起止时间: 2021 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=AH%2FV013459%2F1
• 关键词: Participatory; Action; Research; Disabled; Adolescents

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.

确保残疾人不会受到COVID-19的不成比例的影响是全球卫生的优先事项。残疾、社会经济地位低下、边缘化和年龄等相互交织的脆弱性表明，残疾儿童和青年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影响的研究有限。为了掌握他们的经验，他们必须参与设计收集数据的工具和方法。除了作为答复者之外，儿童很少有机会参与研究，因为他们对包容性方法和示范性研究的认识不足，需要这种研究促进儿童作为研究进程积极参与者的作用。我们与伦敦大学学院、发展研究所、加德满都大学和Diverse Patterns的合作将开发方法和工具，以增加塞浦路斯人参与研究他们在尼泊尔两个农村地区的流行病经历。我们将审查文献，工具和指导，用于捕捉CYPD经验，在这一流行病和其他危机，并召集一个咨询小组的残疾人组织（DPO）的代表，告知我们的研究的发展。我们将通过当地的残疾人组织联系12名患有不同程度严重至中度残疾的男性和女性CYPD的家庭，并邀请他们参加访谈和讨论。照顾者往往为塞浦路斯残疾人说话，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，通常与CYPD有更平等的关系。因此，我们将要求参与者确定另一个他们希望在整个过程中支持他们的年轻人，我们将培训这个人成为一个推动者。我们将与CYPD互动四次。(1)我们将与年轻人及其照顾者进行访谈，探讨他们对这一流行病的感受，测试参与性工具的使用情况。工具可能包括带有贴纸和图片卡的可视时间轴、本地开发的“会说话的垫子”、“感觉”骰子和带有图片卡的小插曲。我们将分析这些数据，反思和完善参与性方法和工具。(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，他们认为谁是同龄人，以及采访他们不熟悉的人的可能性。他们将选择他们想采访的人，讨论他们会问什么，并练习使用工具和方法（3）我们将观察和支持同行采访，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，比较第一次和同行访谈的数据，并比较照顾者，CYPD和同行的数据。我们将采用参与式方法，将调查结果反馈给CYPD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并总结经验教训。我们的成果将传播CYPD如何经历COVID-19以及如何与CYPD进行参与性研究。我们将与CYPD共同设计一部电影，以交流他们对大流行病的经验，并制作一部培训电影，以帮助其他组织发展与CYPD进行参与性研究的能力。我们将举办一次国际性的包容性网络研讨会，并鼓励参与的利益攸关方使用参与性方法，与塞浦路斯人民一起收集关于他们在这一流行病和其他危机中的经历的数据。这将增加关于COVID-19对CYPD影响的全球文献，并为制定包容性应对措施提供信息。

项目成果

Describing adolescents with disabilities' experiences of COVID-19 and other humanitarian emergencies in low- and middle-income countries: a scoping review.

描述低收入和中等收入国家残疾青少年在 COVID-19 和其他人道主义紧急情况中的经历：范围界定审查。

• DOI: 10.1080/16549716.2022.2107350
• 发表时间: 2022-12-31
• 期刊: GLOBAL HEALTH ACTION
• 影响因子: 2.6
• 作者: Rohwerder, Brigitte;Wong, Sara;Pokharel, Shraddha;Khadka, Dipesh;Poudyal, Niraj;Prasai, Sagar;Shrestha, Nir;Wickenden, Mary;Morrison, Joanna
• 通讯作者: Morrison, Joanna

Adolescents with disabilities and caregivers experience of COVID-19 in rural Nepal.

• DOI: 10.3389/fpubh.2023.1189067
• 发表时间: 2023
• 期刊: FRONTIERS IN PUBLIC HEALTH
• 影响因子: 5.2
• 作者: Morrison, Joanna;Poudyal, Niraj;Pun, Insha;Prasai, Sagar;Shrestha, Nir;Khadka, Dipesh;Shrestha, Sushmita;Rohwerder, Brigitte;Wickenden, Mary
• 通讯作者: Wickenden, Mary