Burden on Caregivers of Children with Autism Spectrum Disorder in El-Beheira Governorate

Document Type : Original Article

Authors

1 Nursing Specialist in Abou Hommos Health Directorate, El-Beheira Governorate, Egypt

2 Professor of Community Health Nursing, Faculty of Nursing, Damanhour University, Egypt

3 Assistant Professor of Nursing Education, Faculty of Nursing, Damanhour University, Egypt

Abstract

Background: Caregiver of Children with Autism Spectrum (ASD) are experienced high level of stressors and burden   due to lack of information related to ASD, lack of health service, lack of social support and financial problems which increase the caregiver burden. The aim of this study was to assess the burden experienced by caregivers of child with autism spectrum disorder in El-Beheira Governorate. Research design: a descriptive research design was used. Settings: This study was carried out at all governmental intellectual schools in El-beheira governorate and private centers for autism coping and rehabilitation in El-Beheira governorate. Subjects: this study was carried out on all caregivers of children with ASD at the previous mentioned setting were included into the study (110 caregiver) at 2019-2020 academic years.  Data collection tools: data were collected using three tools: Tool (I): Stressors of caregiver having Children with Autism Interview Schedule. Tool (II): Caregiver burden scale. Tool (III): caregivers Adjustment pattern Adapted to modify their child behaviour. Results: The majority of the caregivers 90.8% were the mothers of the autistic child, about 75.2% had high level of physical and psychological stressors. About 46.6% of them had high level of social stressors, about (80%) of them had high level of marital stressors and about 100% of caregivers had high level of financial stressors. Also, about (97.3%) of them had high level of burden with mean percent score 83.75%. about (76.4%) of the caregiver had moderate level of adjustment. Conclusion: the study concluded that majority of the studied caregivers had high level of burden, they were vulnerable to   health hazards as the majority of them had high level of physical and psychological burden because they the only provider of care for the autistic child and ignoring their health. Moreover, the majority of them were suffering from financial problems, as the cost of treatment of autism spectrum disorder is very high and endless rehabilitation process. Recommendations: Conduct health education campaigns in rural & urban areas about early sign and symptoms of ASD and benefits that result from early identification of sign and symptoms of ASD. Early case finding & screening of early sign and symptoms of autism spectrum disorder cases. Encourage small projects and provide opportunity for housewives to increase their income to help them in expensive treatment and the lifelong process of coping with autism

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