Investigation of the Caregiver Burden and Related Factors in Parents of Children with Down Syndrome 4 to 12 Years in Tehran During 2020

Objectives: Having a child with disability has a profound effect on the family and can impose many problems and challenges on parents. Children with Down syndrome (DS) are a large group of children with special needs who are at risk for chronic physical illness, developmental problems, behavioral and emotional problems. These problems create more health and care needs in these children. Therefore, the aim of the present study was to investigate the caregiver burden and related factors in parents of children with DS 4 to 12 years in Tehran during 2020. Materials and methods: In this cross-sectional study, 150 parents (91 females and 59 males) of children with Down syndrome participated. Participants were parents who referred to rehabilitation centers and Down Syndrome Center in Tehran who were selected using convenience sampling method. Demographic information questionnaire and Novak caregiver burden questionnaire (1989) were used to collect. The participants were asked to complete these questionnaires carefully. SPSS software and non-parametric tests included Mann-Whitney U, Kruskal-Wallis, and Spearman correlation test were used to analyze the data. Results: Based on data analysis, the mean age of the parents was 38/78 ± 7/92 years. Sixty percent of children with Down syndrome were boys and 40% were girls with a mean and standard deviation of 7.14 ± 2.38 years. The mean and standard deviation of the total parental care burden score and its subscales were as follows: Overall care burden (68.12 ± 17.51), temporal care burden (15.95 ± 5.2), developmental care burden (15.46 ± 4.84), mental care burden (12.22 ± 4.85), physical care burden (11.24 ± 4.47), and social care burden (11.18 ± 4.94). There was a significant relationship between care burden and the following variables: age of parents (r = -0.66, p = 0.001), parents’ income (r = -0.6, p = 0.001), number of children (r = 0.55, p = 0.001, age of the child (r = 0.6, p = 0.001). While factors such as parents’ gender, child gender, parents’ marital status, receiving special education, care needs and care status had no effect on the amount of parental care burden (p > 0.05). Conclusion The results of the present study showed that parents of children with Down syndrome experience moderate care burden in caring for their child. The findings of this study provide the opportunity for relevant government agencies, specialists and health centers to an understanding of the needs of children with Down syndrome and their parents at different stages of the disease, treatment and care. And, consequently, develop appropriate strategies to reduce the caring stress of their caring parents.