急性白血病化疗患儿主要照顾者参与用药安全体验的质性研究

Primary caregivers’experience of engagement for medication safety in acute leukemia children with chemotherapy:a qualitative study

目的探讨急性白血病化疗患儿主要照顾者参与用药安全的体验,为制订针对性的干预措施提供依据。方法采用目的抽样法,选取2022年12月广州市某三级甲等综合医院收治的11名12岁以下急性白血病化疗患儿的主要照顾者作为研究对象,基于患者和家属参与用药安全层级框架对其进行半结构式访谈。采用Colaizzi 7步分析法归纳并提炼主题。结果共提炼4个主题,9个副主题:①化疗用药信息缺乏,包括疾病相关用药知识缺乏、用药信息获取能力不足;②用药信息有效沟通不足,包括与医护人员沟通不畅、照顾者间沟通内容有限;③参与用药安全程度不高,包括参与精力不足、参与行为单一、参与策略有限;④平等参与用药安全不足,包括过度依赖医护人员、深度参与机会缺乏。结论主要照顾者参与急性白血病化疗患儿用药安全的程度较低,应提高照顾者对患儿用药的认知水平,促进医患共同参与用药安全,为照顾者赋能并确保其全程参与。

Objective To explore primary caregivers’experience of engagement for medication safety for acute leukemia children with chemotherapy,and to provide bases for formulating targeted interventions.Methods In December 2022,the purposive sampling was used to select 11 primary caregivers of children under 12 with acute leukemia in a tertiary A general hospital in Guangzhou.Semi-structured interviews were held based on the Ladder of Patient and Family Engagement framework.Colaizzi's seven-step method was used for data analysis.Results 4 main themes and 9 sub-themes were identified,including lack of information on chemotherapy medication(lack of knowledge of disease-related medication and insufficient access to medication information),inadequate effective communication of medication information(poor communication with healthcare professionals and limited communication content among caregivers),low level of participation in medication safety(lack of energy to participate,single participation behavior,and limited participation strategies),and inadequate equal participation in medication safety(over-reliance on healthcare professionals and lack of opportunities for deep participation).Conclusion Primary caregivers’degree of engagement for chemotherapy medication safety in their children with acute leukemia is relatively low.Interventions should be taken to improve caregivers’knowledge of their children's medication,facilitate involvement of healthcare professionals and patients and caregivers,empower caregivers to ensure their full participation in their children's medication safety.