甲基丙二酸血症患儿饮食治疗的照护体验

Diet therapy care experience of children with Methylmalonic Acidemia:a qualitative study

目的 :探讨甲基丙二酸血症患儿在进行饮食治疗时其照顾者的照护体验,以期为促进患儿饮食治疗管理提供参考和依据。方法 :应用现象学研究法,采用目的抽样法,于2021年9月—12月选取山东省某三级甲等医院进行治疗或复诊的16名单纯型甲基丙二酸血症患儿照顾者进行半结构式访谈,借助Nvivo 12软件整理访谈资料,并运用主题分析法分析并提炼主题。结果:通过归纳分析共提炼出5个主题和14个亚主题,5个主题分别是:患儿自身限制、积极的应对方式、饮食治疗知识缺乏、医疗食品获取困难、社会支持系统薄弱。结论 :甲基丙二酸血症患儿照顾者在患儿饮食治疗过程中起到重要作用,照顾者积极的应对方式可提高患儿治疗依从性,但在治疗过程中仍存在诸多阻碍和问题。医护人员可联合照顾者呼吁社会各界,加强对甲基丙二酸血症患儿的关注,提高患儿的饮食治疗依从性,改善患儿预后。

Objective:To explore the diet therapy care experience of children with Methylmalonic Acidemia(MMA),in order to provide reference and basis for promoting the management of children's diet therapy.Methods:Using the phenomenological research method and the purposeful sampling method,from September to December 2021,16 caregivers of children with isolated MMA who were treated or revisited in a tertiary grade A hospital in Shandong province were selected for semi-structured interviews.The Nvivo 12 software was used to organize the interview data.Using the thematic analysis method to analyze and refine the themes.Results:A total of 5 themes and 14 sub-themes were extracted through inductive analysis,and the 5 themes were:children's self-restriction,positive coping style,lack of knowledge about diet therapy,difficulty in obtaining medical food,and weak social support system.Conclusion:The caregivers of children with MMA play an important role in the process of die therapy,and a positive coping styles of caregivers can improve compliance,but there are still many obstacles and problems in the treatment process.Medical staff can unite with caregivers to appeal to all sectors of society to increase attention to children with MMA,and improve children's compliance and prognosis.