ABSTRACT
Disability is a unique shared experience for families as it impacts everyone and also affects all aspects of the functioning of the family. Coronavirus disease 2019 (COVID-19) poses unique distress for children with disabilities and their caregivers as their concerns are largely ignored in management programs globally. Although the overall impacts of COVID-19 have been disruptive for everyone, impacts on children with chronic illnesses and disabilities, such as those with thalassemia, have been varied and more amplified. Despite this, there has been little research on the clinical and nonclinical impacts of severe acute respiratory syndrome coronavirus 2 on children with disabilities and chronic illnesses, including on blood transfusion-dependent children such as those with thalassemia. This chapter examines the multi-dimensional impacts of the ongoing pandemic on children and adolescents diagnosed with beta-thalassemia and their families. This chapter aims (a) to explore the challenges children with disabilities and their families are facing during the COVID-19 pandemic, (b) to examine the management and coping strategies of children with thalassemia and their families during this public health crisis, and (c) to examine how COVID-19 is changing access and inclusiveness to care. The chapter highlights that children with disabilities and their families have been overlooked and uncushioned in pandemic health management policy.
