Giarelli Ellen, Bernhardt Barbara A, Mack Rita, Pyeritz Reed E
University of Pennsylvania School of Nursing, Biobehavioral Research Center, Philadelphia, Pennsylvania 19104, USA.
Qual Health Res. 2008 Apr;18(4):441-57. doi: 10.1177/1049732308314853.
Self-management of chronic illness requires acquisition of self-care skills such as seeking knowledge, adhering to recommendations, practicing healthy behaviors, and life-long self-surveillance. This article describes the core problem and psychosocial processes by which parents transfer, and children take on, the responsibility for managing a chronic genetic condition. Individuals with Marfan syndrome (MFS), their parents, and health care providers were the sources of empirical data. A sample of 108 providers, parents, and individuals with MFS were recruited through a genetics clinic and the National Marfan Foundation. The core problem of "becoming fit and fitting in" is resolved via concurrent psychosocial processes: shifting perspective, shifting orientation, shifting sphere, shifting ownership, and shifting reasoning. Transition to self-management is more than planning the transfer of services from pediatric to adult care, and involves gradual changes in knowledge, attitudes, and behavior influenced by parents, peers, and health care providers. Transition to self-management is part of an evolving model of participation in life-long surveillance.
慢性病的自我管理需要掌握自我护理技能，如获取知识、遵循建议、践行健康行为以及进行终身自我监测。本文描述了父母传递以及孩子承担管理慢性遗传病责任的核心问题和心理社会过程。患有马凡综合征（MFS）的个体、他们的父母以及医疗服务提供者是实证数据的来源。通过一家遗传学诊所和国家马凡基金会招募了108名医疗服务提供者、父母以及患有MFS的个体作为样本。“变得健康并融入其中”这一核心问题通过并行的心理社会过程得以解决：转变观念、转变方向、转变范围、转变所有权以及转变推理。向自我管理的转变不仅仅是计划将服务从儿科护理转移到成人护理，还涉及受父母、同龄人以及医疗服务提供者影响的知识、态度和行为的逐渐变化。向自我管理的转变是参与终身监测的不断发展模式的一部分。
