Exploring the Challenges of Families With Mentally Retarded Children in Care Centers Under the Supervision of the Welfare Organization of Tehran in the COVID-19 Pandemic Conditions: A Qualitative Study

Abstract

Objective: Families with mentally-retarded children need more support than other families in overcoming crises and achieving social adjustment. So, it seems necessary to pay special attention to these families durinzg the COVID-19 pandemic and identify their experiences and challenges to provide more support for this vulnerable group. Therefore, the present study was carried out in care centers under the supervision of the Tehran state welfare organization of Iran (SWO) during the COVID-19 pandemic to identify the challenges of families with mentally retarded children. Materials & Methods: The present study was conducted with a qualitative approach and contractual content analysis method of Granheim and Lundman (2004). The participants were 18 families with mentally-retarded children living in care centers under the supervision of the Tehran State welfare organization of Iran (SWO), who were selected by purposive sampling. Sampling was continued until data saturation. Data were collected and analyzed using in-person or online (telephone) in-depth semi-structured interviews from July 11 to September 22, 2021. To evaluate the data strength, four criteria of credibility, transferability, dependability, and confirmability of Guba and Lincoln were used. Results: Based on data analysis, 6 main categories and 23 subcategories were obtained. The main categories and subcategories included 1) constant worry about their children getting COVID-19 (inability of the child to protect against coronavirus, not observing protocols by the staff, underlying diseases and deficiency in immune system, few preventive measure for under 18 years people, conflicting information about children and adolescents' infection), 2) disconnection and intensification of stress (agitation and irritability of the disabled, worry about the future, parent's mental confusion, fear of losing child), 3) conflict with family tensions and contradiction (intensification of family guilt, overlooking other children, couple's self-blaming, tension in family interactions, intensification of family melancholia), 4) non-supportive community (further social stigma, social exclusion, lack of supporting vulnerable groups, the limitations of social distancing), 5) family economic crisis (costs of keeping child in the center, losing job and lower income of the family head, poverty and intensification of unstable economic conditions), and 6) care and educational concerns (decreasing the quality of care for the disabled, suspension of rehabilitation and educational activities, restrictions on leisure activities and communication for the disabled). Conclusion: The results showed that the families of mentally-retarded children had encountered many challenges and concerns during the COVID-19 epidemic, some of which were related to the intensification of psychological pressures and some due to insufficient support from governmental and non-governmental institutions for these families. The study findings can be used to provide services and design support programs and policies for children with mental disabilities and their families. In this regard, it is recommended to pay special living allowances, strengthen the communication system between parents and children living in care centers, prepare a care and health packages for parents, design and implement psychological interventions to reduce parents' anxiety and stress, and provide free counseling.