Search

IntroductionIntersecting vulnerabilities of disability, low socio-economic status, marginalization, and age indicate that adolescents with disabilities in low-and middle-income countries were uniquely affected by the COVID-19 pandemic. Yet, there has been limited research about their experience. We conducted participatory research with adolescents with disabilities in rural, hilly Nepal to explore their experience of the pandemic and inform understanding about how they can be supported in future pandemics and humanitarian emergencies.MethodsWe used qualitative methods, purposively sampling adolescents with different severe impairments from two rural, hilly areas of Nepal. We collected data through semi-structured interviews with five girls and seven boys between the age of 11 and 17 years old. Interviews used inclusive, participatory, and arts-based methods to engage adolescents, support discussions and enable them to choose what they would like to discuss. We also conducted semi-structured interviews with 11 caregivers.ResultsWe found that adolescents with disabilities and their families experienced social exclusion and social isolation because of COVID-19 mitigation measures, and some experienced social stigma due to misconceptions about transmission of COVID-19 and perceived increased vulnerability of adolescents with disabilities to COVID-19. Adolescents who remained connected with their peers throughout lockdown had a more positive experience of the pandemic than those who were isolated from friends. They became disconnected because they moved away from those they could communicate with, or they had moved to live with relatives who lived in a remote, rural area. We found that caregivers were particularly fearful and anxious about accessing health care if the adolescent they cared for became ill. Caregivers also worried about protecting adolescents from COVID-19 if they themselves got ill, and about the likelihood that the adolescent would be neglected if the caregiver died.ConclusionContextually specific research with adolescents with disabilities to explore their experience of the pandemic is necessary to capture how intersecting vulnerabilities can adversely affect particular groups, such as those with disabilities. The participation of adolescents with disabilities and their caregivers in the development of stigma mitigation initiatives and strategies to meet their needs in future emergencies is necessary to enable an informed and inclusive response.

Background The COVID-19 pandemic and other humanitarian emergencies exacerbate pre-existing inequalities faced by people with disabilities. They experience worse access to health, education, and social services, and increased violence in comparison with people without disabilities. Adolescents with disabilities are amongst those most severely affected in these situations. Using participatory research methods with adolescents can be more effective than other methods but may be challenging in such emergency contexts. Objectives We conducted a scoping review to: 1) describe the literature and methods used in peer-reviewed and grey literature on adolescents (aged ten to nineteen) with disabilities’ experience of COVID-19 and other humanitarian emergencies in low- and middle-income countries, and 2) identify research gaps and make recommendations for future research. Methods The review followed a protocol developed using PRISMA guidelines and the Arksey and O’Malley framework. We searched grey and peer-reviewed literature between 2011 and 2021. Results Thirty studies were included. Twelve were peer-reviewed, and of those seven used participatory methods. Humanitarian emergencies had adverse effects on adolescents with disabilities across health, education, livelihoods, social protection, and community participation domains. Surprisingly few studies collected data directly with adolescents with disabilities. Twenty-three studies combined data from non-disabled children, caregivers, and disabled adults which made it challenging to understand adolescents with disabilities’ unique experience. Conclusions Our review highlights both the scarcity of literature and the importance of conducting research with adolescents with disabilities in humanitarian contexts. Despite challenges, our review shows that it has been possible to conduct research with adolescents with disabilities to explore their experiences of humanitarian emergencies, and that these experiences were different from those of non-disabled adolescents. There is a need to disaggregate findings and support the implementation and reporting of rigorous research methods. Capacity development through partnerships between non-governmental organisations and researchers may improve reporting of methods.