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이분척추 환아의 어머니가 인식한 질병관리의 어려움: 질적 서술적 접근

 Mothers’ Perceived Difficulties in the Management of Chronic Conditions of Children with Spina Bifida: A Qualitative Descriptive Approach

아동간호학회지 2016년 22권 4호 p.247 ~ 256
KMID : 0606120160220040247
임승화 ( Lim Seoung-Wha ) - 서울대학교 간호대학

이명선 ( Yi Myung-Sun ) - 서울대학교 간호대학

Abstract

Purpose: The purpose of the study was to identify and describe the caregiving difficulties that mothers of children with spina bifida experience from their own perspectives.

Methods: A qualitative descriptive study was designed. Data were collected from five mini-focus group interviews and four individual interviews using open-ended questions. Nineteen mothers of children with mild spina bifida participated in the study during 2014-2015. Data were analyzed using qualitative content analysis to identify major difficulties perceived by the mothers.

Results: Five domains were identified with 12 subdomains. “Daily routine continence management” describes difficulties arising in bladder and bowel management for the child with spina bifida. “Management of school life of child” deals with difficulties in relation to the school facilities, such as the toilets, as well as teachers and friends. “Relationship with family and neighbors” illustrates problems in relations with their spouse, normal children, relatives and neighbors. “Maintaining physical and psychological health” includes physical and psychological problems of the mothers. “Finance” describes economic burden that the mothers face in the management of child’s illness.

Conclusion: The findings from this study provide insight into the practical issues related to the management of chronic conditions of children with spina bifida from the mothers’ perspectives.
KeyWords
척수 이형성증, 어머니, 질적연구
Spinal dysraphism, Mothers, Qualitative research
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학술진흥재단(KCI) KoreaMed