探索镰状细胞病患儿家庭中父母与兄弟姐妹之间的沟通。
Exploring parent-sibling communication in families of children with sickle cell disease.
作者信息
Graff J Carolyn, Hankins Jane S, Hardy Belinda T, Hall Heather R, Roberts Ruth J, Neely-Barnes Susan L
机构信息
University of Tennessee Health Science Center, College of Nursing and Boling Center for Developmental Disabilities, Memphis, TN 38105, USA.
出版信息
Issues Compr Pediatr Nurs. 2010;33(2):101-23. doi: 10.3109/01460861003663987.
BACKGROUND
Communication within families of children with sickle cell disease is important yet has not been adequately investigated.
METHODS
Focus group interviews were conducted with parents of children with sickle cell disease to explore parent-sibling communication about sickle cell disease.
RESULTS
Communication was influenced by attributes and behaviors of the parent, the child with sickle cell disease, and the sibling; extended family, neighbors, friends, and church members or social networks; and available, accessible resources related to the child's health, child's school, and parent employment. Outcomes that influenced and were influenced by factors within and outside the parent-sibling dyad and nuclear family included parent satisfaction, parent roles, family intactness, and status attainment.
CONCLUSIONS
These findings support previous research with African-American families and expand our views of the importance of educating parents, family members, and others about sickle cell disease. The findings suggest a need to explore sibling perception of this communication, parent and sibling perception of the impact of frequent hospitalizations and clinic visits on the sibling and family, and variations within families of children with sickle cell disease.
背景
镰状细胞病患儿家庭内部的沟通很重要，但尚未得到充分研究。
方法
对镰状细胞病患儿的家长进行焦点小组访谈，以探讨家长与兄弟姐妹之间关于镰状细胞病的沟通情况。
结果
沟通受到以下因素影响：患镰状细胞病孩子的家长、孩子及兄弟姐妹的特质和行为；大家庭、邻居、朋友、教会成员或社交网络；以及与孩子健康、孩子学校和家长就业相关的可得且易获取的资源。影响亲子二元组和核心家庭内外因素并受其影响的结果包括家长满意度、家长角色、家庭完整性和社会地位获得。
结论
这些发现支持了之前针对非裔美国家庭的研究，并拓展了我们对于向家长、家庭成员及其他人员开展镰状细胞病教育重要性的认识。研究结果表明，有必要探究兄弟姐妹对这种沟通的看法、家长和兄弟姐妹对频繁住院和门诊就诊对兄弟姐妹及家庭影响的看法，以及镰状细胞病患儿家庭内部的差异。
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