The Coping Pattern of Parents for their Children Complaining from Spinal Muscular Atrophy

Abstract
Spinal Muscular Atrophy (SMA) is a life-limiting genetic disorder affects the muscles and causes weakness . Parents of children with SMA face significant challenges in caring for their children, including coping with the emotional and practical aspects of the condition. Aim of the study: To assess the Coping pattern and awareness of parents for their children complain from spinal muscular atrophy Research design: A descriptive research design was used in this study. Setting: The study was conducted in the outpatient clinics of Health Insurance in Cairo two clinics in Naser clinic and clinic of Naser City Hospital Sample: A purposive sample was used in this study. The sample was equal 367 of parents of diagnosed cases with SMA. Tools: One tool used: structured Interviewing questionnaire. It consist of 6 parts: 1) Socio-demographic characteristics, 2) Family and child past history, 3) Parents’ knowledge related to SMA disease, 4) Parents’ attitude regarding their SMA children , 5) The parents' reported practice regarding their children motor skills, 6) Jaloweic Coping Scale. Results: The study result revealed that, 79.6% of parents had poor level of knowledge, 51.2% had adequate level of practice, 52.3% had negative attitude regarding Children Complaining from SMA. Also, 70.8% had positive coping pattern. (P= 0.000). Conclusion: Significant relation between knowledge, practice, attitude and coping and all demographic characteristics except residence, job with attitude. (P= 0.000). Recommendation: Procedure pamphlets and booklet containing all essential information about SMA should be disseminated at hospitals among parents of children complaining from SMA.