Lipstein Ellen A, Britto Maria T
Center for Innovation in Chronic Disease Care, Division of Adolescent Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (EAL, MTB)
James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (EAL, MTB)
Med Decis Making. 2015 Aug;35(6):703-13. doi: 10.1177/0272989X15581805. Epub 2015 Apr 21.
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. The objective was to understand parents' processes for treatment decision making in pediatric chronic conditions.
We conducted a qualitative, prospective longitudinal study using recorded clinic visits and individual interviews. After consent was obtained from health care providers, parents, and patients, clinic visits during which 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 2 people and analyzed using framework analysis with sequential, time-ordered matrices.
21 families, including 29 parents, participated in video-recording and interviews. We found 3 dominant patterns of decision evolution. Each consisted of a series of decision events, including conversations, disease flares, and researching of treatment options. Within all 3 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 3 distinct patterns. Understanding these patterns and the varying elements of parents' decision processes is an essential step toward developing interventions that are appropriate to the setting and that 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.
在儿科慢性病的背景下，患者及其家庭需要反复做出治疗决策。然而，对于他们的决策过程如何随时间演变，我们知之甚少。目的是了解父母在儿科慢性病治疗决策中的过程。
我们采用记录门诊就诊情况和个人访谈的方式进行了一项定性、前瞻性纵向研究。在获得医疗服务提供者、父母和患者的同意后，对预计会讨论治疗决策的门诊就诊进行录像。然后，父母参与一系列关于他们决策经历的电话访谈。由两人对数据进行编码，并使用带有顺序、时间顺序矩阵的框架分析进行分析。
21个家庭，包括29位父母，参与了录像和访谈。我们发现了3种主要的决策演变模式。每种模式都由一系列决策事件组成，包括对话、病情发作和治疗方案研究。在所有3种模式中，决策都有恒定和演变的元素，分别如角色认知和治疗期望。父母做出治疗决策后，会立即转向与慢性病相关的下一个决策，形成一个迭代循环。
在本研究中，决策是一个以3种不同模式出现的迭代过程。了解这些模式以及父母决策过程中的不同元素，是开发适合该环境并利用家庭在应对慢性病过程中可能发展出的技能的干预措施的关键一步。未来的研究还应考虑儿童和青少年在这一决策过程中的作用。
