儿科肠衰竭中的照护者决策：一项聚焦缺铁性贫血的定性研究。
Caregiver Decision-making in Pediatric Intestinal Failure: A Qualitative Study Focused on Iron Deficiency Anemia.
机构信息
Division of Pediatric Gastroenterology, Hepatology, and Nutrition, UPMC Children's Hospital of Pittsburgh, Pittsburgh, PA.
Valleywise Health Medical Center, Phoenix, AZ.
出版信息
J Pediatr Gastroenterol Nutr. 2021 Mar 1;72(3):446-450. doi: 10.1097/MPG.0000000000002979.
BACKGROUND
Caregivers of children with intestinal failure (IF) face difficult decisions without a clear best alternative. Providers assist in decision-making but often lack knowledge of caregiver perspectives. Using decision-making around anemia treatment as a focal point, we explored how caregivers of children with IF prefer to make decisions. Our goal was to offer insight to guide providers as they assist in decision-making.
METHODS
We conducted 12 half-hour semistructured interviews with parents of children with IF. Interview questions addressed general decision-making and specifics of iron supplementation, including key factors and stakeholders in decision-making. Interviews were transcribed verbatim. Two investigators coded the transcripts and inductively derived themes.
RESULTS
Four themes were identified regarding decision-making. They involved the search for reliable, accurate, and positive information; the role of caretakers on the medical team; the relationships between caretakers and the medical team; and effective communication. Themes around anemia treatment included: identification of anemia by bloodwork; proactive supplementation; individualized regimens; prioritizing safety and convenience.
CONCLUSIONS
Understanding caregiver perspectives regarding anemia treatment in pediatric IF identifies opportunities for systematic quality improvement.
背景
儿童肠衰竭（IF）的照顾者在没有明确最佳选择的情况下面临困难的决策。提供者协助决策，但往往缺乏对照顾者观点的了解。我们以贫血治疗的决策为重点，探讨了儿童 IF 照顾者喜欢如何做出决策。我们的目标是提供见解，指导提供者在协助决策时提供帮助。
方法
我们对 12 名患有 IF 的儿童的父母进行了 12 次半小时的半结构化访谈。访谈问题涉及一般决策和铁补充的具体问题，包括决策中的关键因素和利益相关者。访谈逐字转录。两名研究人员对转录本进行了编码，并进行了归纳主题。
结果
确定了四个决策主题。它们涉及寻找可靠、准确和积极的信息；医疗团队中照顾者的角色；照顾者与医疗团队之间的关系；以及有效的沟通。贫血治疗的主题包括：通过血液检查发现贫血；主动补充；个体化方案；优先考虑安全性和便利性。
结论
了解儿科 IF 中照顾者对贫血治疗的看法，可以为系统的质量改进提供机会。
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