Brauer Lara, de Cruppé Werner, Geraedts Max
Institute for Health Services Research and Clinical Epidemiology (IGVE), Philipps-University Marburg (UMR), Marburg, Hesse, Germany.
PLoS One. 2025 May 16;20(5):e0323883. doi: 10.1371/journal.pone.0323883. eCollection 2025.
Endometriosis is a chronic disease associated with stigmatisation and delayed diagnoses. In order to create or improve positive healthcare encounters for patients, this study aimed to explore the experiences of women with endometriosis and to identify challenges and resources for these patients.
Qualitative, semi-structured interviews were conducted to explore lived experiences of endometriosis patients. A purposive sampling strategy was used, and patients were included if they had a laparoscopically confirmed diagnosis and at least one contact with the healthcare system in Hesse, Germany. Interviews were conducted between May and August 2023, transcribed, and analysed according to an interpretive phenomenological approach using MAXQDA 24.
In total, 21 women aged 23-54 years (median: 32 years) were interviewed. Three themes were identified, with ambivalence emerging as the common essence of experiences. Patients reported that their experiences were influenced by the role of the healthcare provider, described as either a source of support or an inhibitor in the treatment process. Additionally, patients reported that provider-patient-communication was characterised by both trivialisation and dismissal of symptoms, as well as empathic, encouraging interactions. Limits in the healthcare system, such as the allocation of specialised care, and resources like increased awareness of endometriosis, represented systemic influences on experiences.
This study provides an insight into the ambivalent nature of healthcare experiences from the perspective of endometriosis patients and contributes to a better understanding of patients' needs in healthcare encounters, which may help to create a more positive healthcare experience for them.
子宫内膜异位症是一种与污名化和诊断延迟相关的慢性疾病。为了为患者创造或改善积极的医疗体验，本研究旨在探索子宫内膜异位症女性的经历，并确定这些患者面临的挑战和资源。
进行了定性的半结构化访谈，以探索子宫内膜异位症患者的生活经历。采用了目的抽样策略，纳入了经腹腔镜确诊且在德国黑森州至少与医疗系统有过一次接触的患者。访谈于2023年5月至8月进行，转录后，使用MAXQDA 24按照解释现象学方法进行分析。
共采访了21名年龄在23至54岁（中位数：32岁）的女性。确定了三个主题，矛盾心理成为经历的共同本质。患者报告称，她们的经历受到医疗服务提供者角色的影响，该角色在治疗过程中被描述为支持来源或阻碍因素。此外，患者报告称，医患沟通的特点既有对症状的轻视和忽视，也有共情、鼓励的互动。医疗系统中的限制，如专科护理的分配，以及子宫内膜异位症认知度提高等资源，代表了对经历的系统性影响。
本研究从子宫内膜异位症患者的角度深入了解了医疗体验的矛盾性质，有助于更好地理解患者在医疗接触中的需求，这可能有助于为他们创造更积极的医疗体验。
