Abstract:

Objective To explore the difficulties for parents when making medical decisions for their children with biliary atresia.Methods Totally 16 parents of children with biliary atresia were chosen using purposive sampling and in-depth interviews were conducted. Data was analyzed by Colaizzi’s seven-step method.Results Medical decision-making difficulties involved：the unmatched information and health literacy for decision-making,lack of effective information and emotional support,conflict between treatment and family condition, conflict between reality situation and pressure from public opinion.Conclusion Medical decision-making was influenced by parents’ personal factors, family factors and social factors. Nurses should assist parents in making appropriate decision in time to improve children survival rate and quality of life.

Key words: Biliary Atresia, Parent, Medical Decision-Making, Pediatric Nursing

摘要：

目的 探讨胆道闭锁患儿家长的治疗决策困境。方法 选取16名患儿家长进行深入访谈,采用Colaizzi七步法分析访谈资料。结果 胆道闭锁患儿家长治疗决策困境包括决策信息与健康素养不匹配、缺乏有效的信息与情感支持、家庭意见冲突、现实条件与舆论压力冲突。结论 胆道闭锁患儿治疗决策受家长个人因素、家庭因素和社会因素的共同影响,护士应辅助患儿家长及时制订恰当的治疗决策,提高患儿的生存率和生活质量。

关键词: 胆道闭锁, 家长, 治疗决策, 儿科护理学