Experiences of Mothers with Disabled Children During the COVID-19 Pandemic

Abstract

Introduction: During the COVID-19 pandemic, conditions such as the limitation of resources and the difficulty of access led to disabled individuals and their families to become more vulnerable to the risks posed by the pandemic. Understanding the experiences, difficulties, and needs of individuals with disabilities and their families during the pandemic, as well as evaluating the effects of the crisis, are essential in creating interventions to mitigate these difficulties. This study has aimed to examine the experiences of mothers, who have the burden of care in families with disabled children, during the COVID-19 pandemic.Method: In the study, semi-structured interviews were conducted with mothers of children with disabilities (n = 14) using the phenomenological method, which is one of the qualitative research methods. In the data analysis, Miles and Huberman model was followed, and the codes and categories reflecting the investigated phenomenon were determined by using continuous comparison and phenomenological reduction methods.Findings: According to the results of the study, the difficulties of the mothers' lives increased during the pandemic, and the perception of restrictions resulting from the measures against the pandemic, as well as the inadequacy of access to services, led to increased concern among mothers. The limited support for children with disabilities and their families, as well as their inability to meet their needs with their resources, caused mothers to feel exhausted. In addition to the difficulties they experienced, mothers stated that they had positive experiences as well, since they could spend more productive time with their family members, use digital resources, and feel stronger at the end of the process.Discussion: Compelling experiences such as anxiety, feelings of inadequacy, fatigue, and restraint among mothers with disabled children show that these mothers are among the vulnerable individuals adversely affected by the COVID-19 pandemic. Although the pandemic period was challenging, mothers gained resilience in coping with the difficulties and adapted to the situation.Conclusion and Suggestions: Based on the experiences of families with disabled members for possible future pandemics, services should be provided to facilitate family crisis management, education, advocacy, psychosocial counseling, and empowerment-based studies.