Endometriosis: improving the well being of couples

子宫内膜异位症：改善夫妻福祉

• 批准号: ES/J003662/1
• 负责人: Lorraine Culley
• 金额: $ 9.08万
• 依托单位: De Montfort University
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2012
• 资助国家: 英国
• 起止时间: 2012 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=ES%2FJ003662%2F1
• 关键词: Endometriosis; improving; well; being; couples

Endometriosis is a relatively common, disabling gynaecological condition affecting up to 2 million women in the UK alone. Common symptoms are chronic pelvic pain, fatigue, heavy periods, and a deep pain experienced during sexual intercourse. It is also associated with 40% of attendances at infertility clinics. There is no consensus on what causes endometriosis and there is no definitive cure. Despite the chronic and potentially disabling nature of endometriosis, along with its impact across a wide range of life domains, there is relatively little work on the impact of endometriosis on couples. Whilst all chronic conditions will affect the "well" partner to some extent, endometriosis can be particularly problematic because of its impact on fertility and sexual relationships and because of its invisibility. The few studies which have been done on the 'well' partner in other kinds of chronic illness suggest that endometriosis may impact on the partner in many ways and may compromise the couple relationship. However, there are no published UK studies that focus specifically on either men or couples. Furthermore, most of the research on endometriosis has been on 'white' majority populations. The overall aim of this study is to explore the impact of endometriosis on couples; to contribute to the development of theory in chronic illness and to contribute to improving the well being of people living with endometriosis by providing an evidence base for improving couple support. Our research questions include: How do heterosexual couples experience living with endometriosis? How do the uncertainties of endometriosis diagnosis and prognosis impact on couples? How do women and their partners mobilise resources to negotiate endometriosis and what are the perceptions of key stakeholders (patients and healthcare providers) on how endometriosis management and support can be improved? In what ways can research on endometriosis help us in understanding other chronic conditions? This is a qualitative study in three phases. Phase one is a contextual phase consisting of interviews with key informants including healthcare providers, patients, and support group representatives. Data from these interviews, together with insights from our literature review and advice from an advisory group will inform the development of an interview guide to be used in phase two. Phase Two will consist of separate in-depth interviews with women living with endometriosis and with their male partners. Couples will be recruited from a variety of sources (hospitals, support groups, word of mouth). We anticipate recruiting up to 20 couples for 40 interviews. Studies previously carried out by three of the applicants have indicated the potential importance of ethnicity in understandings of and experiences of endometriosis and the linked condition of infertility. Our sample will therefore include men and women from both White and South Asian groups. Couples will be recruited from several sources (NHS outpatient clinics in four UK cities, endometriosis support groups, and by snowball sampling) to reduce bias in sampling.The interviews will be broad ranging and relatively open in format, allowing each participant to discuss what is important to them in their experience of the phenomenon. Interviews will be supplemented by asking participants to self-record additional data whenever endometriosis has a particular impact on their lives, in the month following interview. Analysis will be guided by principles of interpretive phenomenological analysis.Phase three brings together the findings of phases one and two for discussion at a dialogue workshop of key stakeholders (people with endometriosis and their partners, academics, health professionals, support groups) which will collaboratively explore the findings and discuss how insights from this work can inform theories of chronic illness and contribute to improved support for couples.

子宫内膜异位症是一种相对常见的，致残的妇科疾病，仅在英国就有200万妇女受到影响。常见的症状是慢性盆腔疼痛，疲劳，沉重的时期，以及性交时经历的深度疼痛。它也与40%的不孕症诊所就诊有关。子宫内膜异位症的病因目前还没有定论，也没有确切的治疗方法。尽管子宫内膜异位症具有慢性和潜在的致残性，沿着其在广泛的生活领域的影响，但关于子宫内膜异位症对夫妇的影响的研究相对较少。虽然所有的慢性疾病都会在一定程度上影响“健康”的伴侣，但子宫内膜异位症可能特别有问题，因为它对生育和性关系的影响以及它的不可见性。对患有其他慢性疾病的“健康”伴侣进行的少数研究表明，子宫内膜异位症可能会在许多方面影响伴侣，并可能损害夫妻关系。然而，没有发表的英国研究专门针对男性或夫妇。此外，大多数关于子宫内膜异位症的研究都是在“白色”大多数人群中进行的。本研究的总体目的是探讨子宫内膜异位症对夫妇的影响;通过为改善夫妇支持提供证据基础，为慢性疾病理论的发展做出贡献，并为改善子宫内膜异位症患者的健康做出贡献。我们的研究问题包括：异性恋夫妇如何体验子宫内膜异位症的生活？子宫内膜异位症的诊断和预后的不确定性如何影响夫妇？妇女及其伴侣如何调动资源来协商子宫内膜异位症，关键利益相关者（患者和医疗保健提供者）对如何改善子宫内膜异位症管理和支持的看法是什么？子宫内膜异位症的研究如何帮助我们了解其他慢性疾病？这是一项分三个阶段进行的定性研究。第一阶段是一个背景阶段，包括与关键信息提供者的访谈，包括医疗保健提供者，患者和支持小组代表。这些访谈的数据，以及我们的文献综述和咨询小组的建议，将为第二阶段使用的访谈指南的制定提供信息。第二阶段将包括与患有子宫内膜异位症的女性及其男性伴侣进行单独的深入访谈。夫妇将从各种来源（医院，支持团体，口碑）招募。我们预计招募多达20对夫妇进行40次面试。先前由三名申请人进行的研究表明，种族在理解和经历子宫内膜异位症和相关的不孕症方面具有潜在的重要性。因此，我们的样本将包括来自白色和南亚群体的男性和女性。夫妇将从几个来源（英国四个城市的NHS门诊诊所，子宫内膜异位症支持团体，并通过滚雪球抽样）招募，以减少抽样中的偏差。访谈将是广泛的，相对开放的格式，允许每个参与者讨论什么是重要的，他们在他们的经验的现象。访谈将通过要求参与者在访谈后的一个月内，每当子宫内膜异位症对他们的生活产生特别影响时，自我记录额外的数据来补充。分析将以解释现象学分析的原则为指导。第三阶段将第一阶段和第二阶段的结果汇集在一起，供主要利益相关者在对话研讨会上讨论（子宫内膜异位症患者及其伴侣，学者，卫生专业人员，支助团体）该研究将合作探索研究结果，并讨论这项工作的见解如何为慢性病理论提供信息，并有助于改善对慢性病的支持。夫妻。

项目成果

The missed disease? Endometriosis as an example of 'undone science'.

错过的疾病？子宫内膜异位症作为“撤消科学”的一个例子。

• DOI: 10.1016/j.rbms.2021.07.003
• 发表时间: 2022-03
• 期刊: Reproductive biomedicine & society online
• 作者: Hudson N

Conducting dyadic, relational research about endometriosis: A reflexive account of methods, ethics and data analysis.

• DOI: 10.1177/1363459318786539
• 发表时间: 2020-01
• 期刊: Health (London, England : 1997)
• 作者: Hudson N;Law C;Culley L;Mitchell H;Denny E;Raine-Fenning N
• 通讯作者: Raine-Fenning N

Men, chronic illness and healthwork: accounts from male partners of women with endometriosis.

• DOI: 10.1111/1467-9566.13144
• 发表时间: 2020-06
• 期刊: Sociology of health & illness
• 影响因子: 2.9
• 作者: N. Hudson;C. Law;L. Culley;H. Mitchell;E. Denny;W. Norton;N. Raine-Fenning

A qualitative study of the impact of endometriosis on male partners.

• DOI: 10.1093/humrep/dex221
• 发表时间: 2017-08-01
• 期刊: Human reproduction (Oxford, England)
• 作者: Culley L;Law C;Hudson N;Mitchell H;Denny E;Raine-Fenning N
• 通讯作者: Raine-Fenning N