Mothers’ intentions and behaviours regarding providing risk communication to their daughters about their possibility of being haemophilia carriers: a qualitative study
Mothers’ intentions and behaviours regarding providing risk communication to their daughters about their possibility of being haemophilia carriers: a qualitative study
复制标题
母亲向女儿提供关于她们成为血友病携带者的可能性的风险沟通的意图和行为：一项定性研究
DOI：
10.1111/hae.13864
复制
发表时间：
2019
期刊：
影响因子：
3.9
通讯作者：
Yukiko Miyakoshi
中科院分区：
文献类型：
--
作者：
Tomie Fujii;Teruhisa Fujii;Yukiko Miyakoshi
前言预防性替代疗法改善了血友病患者的生活质量。然而，这些患者及其家人继续报告与怀孕和分娩有关的心理社会问题。在血友病携带者(HCS)几乎没有医疗支持的情况下，父母必须告知孩子她们可能患有血友病。目的本研究旨在阐明有可能患有血友病的女儿的母亲在为她们提供携带者风险沟通(RC)方面的意图和挑战。对20位母亲进行了半结构化访谈，并全部转录。研究采用扎根的理论知识方法，通过反复归纳和演绎的定性编码过程进行。结果本研究包括14位已经为女儿提供RC的母亲，5位还没有提供RC但打算提供RC的母亲，以及1位无意提供RC的母亲。已经提供RC的母亲包括那些没有困扰的母亲和那些在RC方面经历过心理困难的母亲。那些没有提供RC的参与者经历了“不知道该做什么”的困难和“因不确定而焦虑”的感觉，并报告说不知道最好的RC方法或时间。结论这项研究揭示了有困难的人需要支持，告诉他们的女儿他们可能是HCS。医疗保健专业人员可以建议父母减轻为女儿提供携带者RC的负担。
IntroductionProphylactic replacement therapy has enabled improvements in the quality of life of patients with haemophilia. However, these patients and their families continue to report psychosocial problems regarding pregnancy and childbirth. In a situation where there is little medical support for haemophilia carriers (HCs), parents must inform their children regarding their possibility of being HCs.AimThis study aimed to elucidate intentions and challenges among mothers with daughters who may be HCs, regarding providing them with carrier risk communication (RC).MethodsStudy participants were mothers with daughters who have the possibility of being HCs. Semi‐structured interviews were conducted with 20 mothers and were fully transcribed. The analysis was undertaken using a grounded theory‐informed approach, through a process of repeated inductive and deductive qualitative coding.ResultsThe study included 14 mothers who had already provided RC to their daughters, five who had not yet provided RC but who intended to do so, and one with no intention of providing RC. Mothers who had already provided RC included those who were not troubled and those who experienced psychological difficulties regarding the RC. Participants who had not provided RC experienced difficulties with ‘not knowing what to do’ and feelings of ‘anxiety due to uncertainty’ and reported not knowing the best RC method or timing.ConclusionThe study revealed a need for support for persons experiencing difficulties with informing their daughters of their possibility of being HCs. Healthcare professionals can advise parents to reduce the burden of providing carrier RC to their daughters.