Department of Pathology, QEII Health Sciences Centre and Dalhousie University, Halifax, NS, Canada.
Haemophilia. 2011 Mar;17(2):237-45. doi: 10.1111/j.1365-2516.2010.02424.x. Epub 2010 Dec 1.
Previous discussions with haemophilia A (HA) carriers suggested that carriers may experience inappropriate care, resulting in poor relationships with healthcare providers (HCPs; principally physicians and nurses), and unfortunate and extreme emotional and behavioural responses. This was a qualitative study to explore medical experiences of HA carriers and their emotional and behavioural responses. Eleven HA carriers and five Haemophilia Treatment Centre nurses were interviewed. Themes were identified using QSR NVivo 8.0. Carriers and nurses reported HA-related bleeding symptoms in carriers, including life-threatening haemorrhage following injury or medical intervention. Menorrhagia was common and distressing. Negative carrier experiences were related in the determination of genotypic and phenotypic status, management, precautions and HCP attitude, including dismissing carriers' symptoms, concerns or requests for care. Carriers responded with mistrust, lost confidence, disappointment, fear, anxiety, doubt of self or child, discussing experiences, avoidance of healthcare and self-treatment. Dismissive HCP attitudes, ignorance about bleeding disorders in women and unique aspects of the carrier population appear to make errors more likely. This study indicates that carriers experience inappropriate care and encounter dismissive attitudes, and respond emotionally and behaviourally. Our model suggests that systematic medical errors aggravate a negative feedback loop leading to negative emotional and behavioural responses and worsening carrier care. Improved carrier care policies and increased awareness of women's bleeding disorders may improve this situation. Further research is needed to determine whether the themes identified in this study accurately reflect the experiences of carriers in general.
先前与血友病 A (HA) 携带者的讨论表明，携带者可能会经历不适当的护理，导致与医疗保健提供者 (HCPs; 主要是医生和护士) 的关系不佳，并产生不幸和极端的情绪和行为反应。这是一项定性研究，旨在探讨 HA 携带者的医疗体验及其情绪和行为反应。采访了 11 名 HA 携带者和 5 名血友病治疗中心护士。使用 QSR NVivo 8.0 识别主题。携带者和护士报告了携带者的 HA 相关出血症状，包括受伤或医疗干预后的危及生命的出血。月经过多很常见，也很痛苦。负面的携带者体验与基因型和表型状态的确定、管理、预防措施和 HCP 态度有关，包括忽视携带者的症状、关注或护理请求。携带者的反应是不信任、失去信心、失望、恐惧、焦虑、怀疑自己或孩子，讨论经历、避免医疗保健和自我治疗。轻视 HCP 的态度、对女性出血性疾病的无知以及携带者人群的独特性似乎更容易导致错误。这项研究表明，携带者会经历不适当的护理，并遇到轻视的态度，从而产生情绪和行为反应。我们的模型表明，系统的医疗失误加剧了负反馈循环，导致负面的情绪和行为反应，并使携带者的护理恶化。改进携带者护理政策和提高对女性出血性疾病的认识可能会改善这种情况。需要进一步研究以确定本研究中确定的主题是否准确反映了携带者的一般体验。
