Sheffield Hallam University, Sheffield, United Kingdom.
Manchester Metropolitan University, Manchester, United Kingdom.
J Psychosoc Oncol. 2024;42(1):64-79. doi: 10.1080/07347332.2023.2218374. Epub 2023 Jun 28.
The experiences of women who develop lymphoedema in the breast or trunk (BTL) after treatment for breast cancer have received little attention in either the academic or clinical setting. Consequently, women's support needs remain unrecognized.As this study sought to gain an understanding of women's unheard experiences of a poorly understood condition, it was underpinned by The Silences Framework which facilitates research into sensitive or marginalized issues.Fourteen women with BTL participated in individual, unstructured interviews, some using photographs or drawings to reflect their experiences. The data was analyzed using the Listening Guide.Participants revealed that they were unprepared for the development of BTL; for many, the symptoms were unfamiliar and distressing. Furthermore, their concerns were often dismissed by healthcare professionals (HCPs), leading to long delays in obtaining an accurate diagnosis and treatment. For some women, the practical and emotional impact of developing BTL was profound.Increased awareness and education about the risk of BTL as a potential side-effect of treatment for breast cancer is required for HCPs and patients. This will alleviate distress, better prepare patients, and ensure timely referral for treatment to manage this chronic condition.
在接受乳腺癌治疗后出现乳房或躯干淋巴水肿（BTL）的女性的经历，无论是在学术还是临床环境中都很少受到关注。因此，女性的支持需求仍然未得到认可。由于本研究旨在了解女性对这种了解甚少的疾病的未被听到的经历，因此它基于有助于研究敏感或边缘化问题的沉默框架。14 名患有 BTL 的女性参加了个人非结构化访谈，其中一些人使用照片或图画来反映他们的经历。使用听力指南对数据进行了分析。参与者透露，他们对 BTL 的发展毫无准备；对许多人来说，这些症状既陌生又令人痛苦。此外，他们的担忧经常被医疗保健专业人员（HCPs）忽视，导致获得准确诊断和治疗的时间大大延迟。对一些女性来说，出现 BTL 对她们的身体和情感造成了深远的影响。需要提高 HCP 和患者对 BTL 作为乳腺癌治疗潜在副作用的风险的认识和教育。这将减轻痛苦，更好地为患者做好准备，并确保及时转介进行治疗，以管理这种慢性疾病。
