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家长对患有复杂疾病的儿童出院时药物教育的看法和体验。

Parent Perceptions and Experiences Regarding Medication Education at Time of Hospital Discharge for Children With Medical Complexity.

机构信息

Department of Pediatrics, Stanford University School of Medicine, Palo Alto, California; and

Lucile Packard Children's Hospital Stanford, Palo Alto, California.

出版信息

Hosp Pediatr. 2020 Aug;10(8):679-686. doi: 10.1542/hpeds.2020-0078.

Abstract

BACKGROUND

Children with medical complexity (CMC) often require complex medication regimens. Medication education on hospital discharge should provide a critical safety check before medication management transitions from hospital to family. Current discharge processes may not meet the needs of CMC and their families. The objective of this study is to describe parent perspectives and priorities regarding discharge medication education for CMC.

METHODS

We performed a qualitative, focus-group-based study, using ethnography. Parents of hospitalized CMC were recruited to participate in 1 of 4 focus groups; 2 were in Spanish. Focus groups were recorded, transcribed, and then coded and organized into themes by using thematic analysis.

RESULTS

Twenty-four parents participated in focus groups, including 12 native English speakers and 12 native Spanish speakers. Parents reported a range of 0 to 18 medications taken by their children (median 4). Multiple themes emerged regarding parental ideals for discharge medication education: (1) information quality, including desire for complete, consistent information, in preferred language; (2) information delivery, including education timing, and delivery by experts; (3) personalization of information, including accounting for literacy of parents and level of information desired; and (4) self-efficacy, or education resulting in parents' confidence to conduct medical plans at home.

CONCLUSIONS

Parents of CMC have a range of needs and preferences regarding discharge medication education. They share a desire for high-quality education provided by experts, enabling them to leave the hospital confident in their ability to care for their children once home. These perspectives could inform initiatives to improve discharge medication education for all patients, including CMC.

摘要

背景

患有复杂疾病的儿童(CMC)通常需要复杂的药物治疗方案。出院时的药物教育应在药物管理从医院过渡到家庭之前提供关键的安全检查。目前的出院流程可能无法满足 CMC 及其家属的需求。本研究的目的是描述父母对 CMC 出院药物教育的看法和优先事项。

方法

我们进行了一项定性、以焦点小组为基础的研究,采用民族志学方法。招募住院 CMC 的父母参加 1 个或 4 个焦点小组;其中 2 个是西班牙语的。对焦点小组进行录音、转录,然后使用主题分析对代码进行编码和组织成主题。

结果

24 名父母参加了焦点小组,包括 12 名母语为英语的父母和 12 名母语为西班牙语的父母。父母报告了他们的孩子服用的 0 到 18 种药物(中位数为 4)。关于出院药物教育,父母们提出了一系列理想的主题:(1)信息质量,包括对完整、一致信息的需求,以首选语言呈现;(2)信息传递,包括教育时机和专家的传递方式;(3)信息的个性化,包括考虑父母的读写能力和所需信息的水平;以及(4)自我效能,即教育使父母有信心在家中执行医疗计划。

结论

患有复杂疾病的儿童的父母在出院药物教育方面有一系列的需求和偏好。他们都希望得到专家提供的高质量教育,以便在离开医院时对照顾孩子的能力充满信心。这些观点可以为改善所有患者(包括 CMC)的出院药物教育提供信息。

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