Faculty of Nursing, Mutah University, Al-Karak, Jordan.
AL- Basheer hospital, Amman, Jordan.
Haemophilia. 2023 Sep;29(5):1226-1233. doi: 10.1111/hae.14820. Epub 2023 Jul 10.
Haemophilia is an inherited bleeding disorder. Mothers of children with haemophilia experience stress, anxiety and different types of burdens that affect their life negatively.
This study aimed to explore the lived experience of mothers of children with haemophilia.
A descriptive phenomenological design was utilized. The participants were selected purposively from the Jordanian Association for Thalassemia and Hemophilia. Data saturation was achieved by interviewing 20 mothers.
Five themes emerged: (1) the challenges related to the diagnosis, the availability and administration of the clotting factors, and the occurrence of the bleeding emergency; (2) physical, social, psychological and financial burden; (3) fear of child death and disability; (4) stigmatization; and (5) lack of educational and medical support.
Mothers of children with haemophilia suffer from physical, psychological and social consequences. Healthcare providers should carry out educational sessions regarding the importance of support for the family and throughout the life of the child.
血友病是一种遗传性出血性疾病。患有血友病的儿童的母亲会经历压力、焦虑和各种负担，这些都会对她们的生活产生负面影响。
本研究旨在探讨血友病患儿母亲的生活体验。
采用描述性现象学设计。参与者是从约旦地中海贫血和血友病协会中通过目的性抽样选取的。通过对 20 位母亲进行访谈，达到了数据饱和。
出现了五个主题：（1）与诊断、凝血因子的可及性和管理以及出血紧急情况的发生相关的挑战；（2）身体、社会、心理和经济负担；（3）对孩子死亡和残疾的恐惧；（4）污名化；（5）缺乏教育和医疗支持。
血友病患儿的母亲会遭受身体、心理和社会后果。医疗保健提供者应该开展关于支持家庭以及孩子整个生命周期重要性的教育课程。
