الفهرس 
IntroductionOnly 14 pages are availabe for public view
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Abstract
Background: Osteogenesis imperfecta (OI) is a chronic disease that typically presents early in childhood (including at birth for more severe types) and is often due to mutations in the COL1A1 or COL1A2 genes, resulting in an insufficient quantity or functionally deficient forms of Type 1 collagen, an important component of bone, cartilage, and connective tissue ,, The clinical manifestations of OI vary depending on disease severity and may encompass recurrent fractures, persistent pain, short stature, scoliosis, skeletal deformities, hearing loss, respiratory difficulty, and/or dysphagia thus placing a high burden on caregivers,, The lifelong nature of this disease and its multisystem involvement requiring frequent clinic visits across different subspecialties may result in increased stress and depression among parents. In addition, caregiver distress may be heightened by the social isolation from which some children with OI and their parents experience. The aim of the work: The aim of this work is to highlight the burden of caregivers of OI children. Describe the burden level of caregivers of OI children and Identify factors associated with burden of caregivers of OI children. Type of study: cross sectional study. Materials and Methods: Patients and Methods: 52 child of osteogenesis imperfecta were submitted at study .patient were on regular follow up at Mansoura university children hospital and Mansoura Insurance Hospital during year Of 2020 study done by Direct interview between researcher and caregiver of children. The present study showed that the mean age of caregivers was 35.78± 6.27 ranged from 23 years to 55 years. Most of caregivers were mothers, 5.8% fathers and 1.9% grandmothers. Most of CG in this study lived in rural areas (55.8%), Mean age of children with osteogenesis imperfecta was 8.81± 4.53; 38.5% of them less than 6 years, More than half of children were males, 28.8% were preschool. Half of them primary educated 57.7% of children had bone deformity, 76.9% less than 5 th percentile regarding stature, half of them with blue sclera, 11.5 % suffering from hearing loss , 21.2% at risk of low BMD and 57.7% had low BMD with increased fracture risk. The study revealed that burden score of caregivers of children with osteogenesis imperfecta was 49.06±10.95 ranged from 19 to 66. 17.3% of them suffering from mild burden, 50% had moderate burden and 32.7% suffering from severe burden. Conclusion: Most of the CG of OI children are mothers, with age group from ( 23-55), with a stable marital relationship, without occupation, with moderate SES, have secondary educational level and live in rural areas. The burden of these caregivers is predominantly mild to severe. Most of OI Children are more than 6 year old, half of them educated and depend on their caregivers to perform their daily living activities. Recommendations: Based on the study findings, it is recommended to give more attention/care to CG of OI children. Social workers and liaison with social solidarity organization could contribute to alleviate the CG burden. More attention should be given to female caregivers especially mothers and single parent family ,Effective interventions such as general education, support groups, behavior therapy, psychotherapy, counselling and respite must be introduced in the community for caregivers as they face exhausting challenges, increasing the regional and rural availability of support, management and health services, permitting the combination of caregiving and occupation and improve intercultural orientation.so •Psycho-Educational Training on the Psychosocial Adjustment of Caregivers of Osteogenesis Imperfecta. and Interventions should be developed to screen for and target these at-risk caregiver groups with resources and support