Evolution of Pediatric Chronic Disease Treatment Decisions: A Qualitative, Longitudinal View of Parents' Decision-Making Process.
Evolution of Pediatric Chronic Disease Treatment Decisions: A Qualitative, Longitudinal View of Parents' Decision-Making Process.
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DOI：
10.1177/0272989x15581805
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发表时间：
2015-08
期刊：
影响因子：
--
通讯作者：
Britto MT
中科院分区：
文献类型：
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作者：
Lipstein EA;Britto MT
在儿科慢性病的背景下，患者和家属经常被要求做出治疗决定。然而，人们对他们的决策如何随着时间的推移而演变知之甚少。了解家长对儿科慢性病的治疗决策过程。我们利用记录的诊所就诊和个人访谈进行了一项定性、前瞻性纵向研究。在获得医疗保健提供者、家长和患者的同意后，预计将讨论治疗决定的门诊就诊被录像。然后，家长参加了关于他们决策经历的连续电话访谈。数据由两个人编码，并使用具有顺序、按时间排序的矩阵的框架分析进行分析。包括29名家长在内的21个家庭参与了视频录制和采访。我们发现了决策演变的三种主要模式。每个活动都包含一系列决策事件，包括对话、疾病突发和治疗方案研究。在这三种模式中，决策制定的要素既恒定又不断变化，例如角色认知和治疗期望。父母做出治疗决定后，立即转向与慢性病相关的下一个决定，从而形成一个迭代循环。在这项研究中，决策是一个以三种不同模式发生的迭代过程。了解这些模式和父母决策过程的不同要素是制定适合环境的干预措施的重要一步，并利用家庭在获得慢性病经验时可能发展的技能。未来的研究还应该考虑儿童和青少年在这一决策过程中的作用。
In the context of pediatric chronic conditions, patients and families are called upon repeatedly to make treatment decisions. However, little is known about how their decision making evolves over time. To understand parents’ process for treatment decision making in pediatric chronic conditions. We conducted a qualitative, prospective longitudinal study using recorded clinic visits and individual interviews. After obtaining consent from healthcare providers, parents and patients, clinic visits where treatment decisions were expected to be discussed were video-recorded. Parents then participated in sequential telephone interviews about their decision-making experience. Data were coded by two people and analyzed using framework analysis with sequential, time-ordered matrices. 21 families, including 29 parents, participated in video-recording and interviews. We found three dominant patterns of decision evolution. Each consisted of a series of decision events, including conversations, disease flares and researching of treatment options. Within all three patterns there were both constant and evolving elements of decision making, such as role perceptions and treatment expectations respectively. After parents made a treatment decision, they immediately turned to the next decision related to the chronic condition, creating an iterative cycle. In this study, decision making was an iterative process occurring in three distinct patterns. Understanding these patterns and the varying elements of parents’ decision processes is an essential step towards developing interventions that are appropriate to the setting and capitalize on the skills families may develop as they gain experience with a chronic condition. Future research should also consider the role of children and adolescents in this decision process.