"Everything was blood when it comes to me": Understanding the lived experiences of women with inherited bleeding disorders
"Everything was blood when it comes to me": Understanding the lived experiences of women with inherited bleeding disorders
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DOI：
10.1111/jth.15102
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发表时间：
2020-10-21
影响因子：
10.4
通讯作者：
Sholzberg, Michelle
中科院分区：
文献类型：
--
作者：
Arya, Sumedha;Wilton, Pamela;Sholzberg, Michelle
介绍尽管有许多症状的妇女与遗传性出血性疾病的经验，没有研究专门寻求探索和了解这些妇女的生活经历，也没有照顾的障碍，他们可能会遇到。本研究的主要目的是描述遗传性出血性疾病妇女的生活经历。方法研究入选标准如下：年龄≥ 18岁，会说英语，确诊为遗传性出血性疾病。通过治疗保健提供者和加拿大血友病协会的研究成员的鉴定，在加拿大各地招募了妇女。电话采访进行了半结构化的采访风格，逐字转录，并使用描述性主题分析进行分析。结果共调查了15名参与者。中位年龄为31岁（24-70岁）。出现了四个主要主题：围绕诊断的不确定性，通过家庭出血经验的概念化，出血症状的强度，以及出血对身份和日常生活的影响。讨论据我们所知，这是第一项彻底描述患有遗传性出血性疾病的成年女性经历的研究。我们发现，这些女性在诊断过程中经历了多种不确定性。他们通过检查家族史来概念化他们的出血;无论他们的潜在诊断如何，都会经历严重的症状;并围绕他们的出血症状创造身份，这影响了他们生活的多个方面。下一步的研究将涉及分享工作，特别关注治疗计划，护理障碍和影响护理获得的因素。
Introduction Despite the many symptoms that women with inherited bleeding disorders experience, no study has specifically sought to explore and understand the lived experiences of these women, nor the barriers to care that they may encounter. The primary objective of this study was to describe the lived experiences of women with inherited bleeding disorders. Methods Inclusion criteria for study enrollment were the following: age >= 18 years, English speaking, and confirmed diagnosis of an inherited bleeding disorder. Women were recruited across Canada through identification by treating health-care providers and study members of the Canadian Hemophilia Society. Telephone interviews were conducted using a semi-structured interview style, transcribed verbatim, and analyzed using descriptive thematic analysis. Results A total of 15 participants were interviewed. Median age was 31 years (24-70 years old). Four primary themes emerged: uncertainties surrounding diagnosis, conceptualization of experience through family bleeding, intensity of bleeding symptoms, and impact of bleeding on identity and daily life. Discussion To our knowledge, this is the first study to thoroughly describe the experiences of adult women living with inherited bleeding disorders. We found that these women experience multiple uncertainties around their diagnosis. They conceptualize their bleeding by examining family histories; experience severe symptoms irrespective of their underlying diagnosis; and create identities around their bleeding symptoms, which influence multiple aspects of their life. Next study steps will involve sharing work specifically focused on treatment plans, barriers to care, and factors affecting care access.