Continuity of care for children with complex chronic health conditions: parents' perspectives.
Continuity of care for children with complex chronic health conditions: parents' perspectives.
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DOI：
10.1186/1472-6963-9-242
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发表时间：
2009-12-21
影响因子：
2.8
通讯作者：
Sheps S
中科院分区：
文献类型：
--
作者：
Miller AR;Condin CJ;McKellin WH;Shaw N;Klassen AF;Sheps S
护理的连续性主要从学术和服务提供者的角度进行了探索，并与成人患者/客户群体有关。我们采访了患有复杂慢性健康状况的儿童的父母，以检查他们的经历和对护理连续性的看法如何与这些观点相适应；并确定经验中的突出因素，以及促成这一人群连续性的因素。对47名患有脊柱裂、唐氏综合症、注意力缺陷/多动障碍、杜氏肌营养不良症和囊性纤维化的小学学龄儿童的家长进行半结构化访谈。父母描述并绘制了他们与服务提供者在与孩子的健康、福祉和发展相关的所有领域（医疗、康复、教育和社会支持服务）的长期互动模式，并特别关注他们对这些互动中的联系或一致性的看法。使用框架方法对逐字记录进行主题分析，以强加关于父母对护理连续性的观点的结构。现有的关系、信息和管理连续性的学术概念都可以从家长的叙述中看出。服务提供者对儿童的全面了解对父母来说极为重要；这些知识主要是由个人关系的连续性以及书面信息所支撑的。对于这一人口，连续性的概念扩展到这些儿童和家庭实现最佳健康状况所需的所有服务提供者，而不仅仅局限于医生和护士。提供者之间的沟通被视为感知连续性的组成部分。服务和信息的划分导致父母承担了一个必要的协调角色，尽管有时是不舒服的。地理因素、制度结构和实践、提供者态度，以及有时父母的偏好和判断，都被发现对跨提供者、环境和部门的“无缝”管理和提供护理连续性造成障碍。这些发现增加了新的视角，以了解慢性疾病儿童保健的连续性。它们与当代旨在改善向有特殊保健需要的儿童提供服务的连续性的举措有关，表明需要父母支持其在保持连续性方面的重要作用，并为进一步研究提出了途径。
Continuity of care has been explored largely from academic and service provider perspectives, and in relation to adult patient/client groups. We interviewed parents of children with complex chronic health conditions to examine how their experiences and perceptions of continuity of care fit with these perspectives; and to identify the salient factors in the experience of, and factors contributing to, continuity in this population. Parents of 47 elementary school-aged children with spina bifida, Down syndrome, attention-deficit/hyperactivity disorder, Duchenne muscular dystrophy or cystic fibrosis participated in semi-structured interviews. Parents described and mapped the pattern of their interactions with service providers over time in all domains relevant to their child's health, well-being, and development (medical, rehabilitational, educational, and social supportive services), with particular attention paid to their perceptions of connectedness or coherency in these interactions. Verbatim transcripts were analyzed thematically using a framework approach to impose structure regarding parents' perspectives on continuity of care. Existing academic concepts of relational, informational and management continuity were all discernable in parents' narratives. A thorough knowledge of the child on the part of service providers emerged as extremely important to parents; such knowledge was underpinned by continuity of personal relationships, principally, and also by written information. For this population, notions of continuity extend to the full range of service providers these children and families need to achieve optimal health status, and are not limited to physicians and nurses. Communication among providers was seen as integral to perceived continuity. Compartmentalization of services and information led to parents assuming a necessary, though at times, uncomfortable, coordinating role. Geographic factors, institutional structures and practices, provider attitudes, and, on occasion, parent preferences and judgments, were all found to create barriers to "seamless" management and provision of care continuity across providers, settings, and sectors. These findings add new perspectives to the understanding of continuity within chronically ill children's health care. They are relevant to contemporary initiatives to improve continuity of services to children with special health care needs, demonstrate the need for parental support of their important role in maintaining continuity, and suggest avenues for further research.