Endometriosis and Cultural Diversity: Improving Services for Minority Ethnic Women

Funded by Research for Patient Benefit grant PB-PG-0906-11145
Summary May 2010

Introduction



Endometriosis is a chronic, disabling condition. Symptomatic disease is usually characterised by pelvic, abdominal pain and lower back pain, and dyspareunia. Other symptoms such as urinary and bowel dysfunction may be present in some women and endometriosis is associated with up to 40% of attendance at fertility clinics. Although there are several medical and surgical treatments for endometriosis there is no definitive cure. Estimates of incidence vary between 5 and 15% of the adult female population. Research with women from majority communities has shown that endometriosis impacts on all aspects of a woman’s life, and may severely disrupt normal functioning. This research project is the first UK study which has explored the ways in which minority ethnic women experience endometriosis and its treatment.

Research Question



What are the specific needs of women from minority ethnic groups who are living with endometriosis, and how can these effectively be met in the delivery of NHS services?

Aim



To develop, in collaboration with community groups and patients, evidence based and culturally sensitive resources for women with endometriosis and good practice guidance for health professionals providing services to women of minority ethnic origin.

Objectives



Methods



NHS Ethical. approval was obtained for the study in February 2008 [REC reference number: 08/H1204/8]. Following a systematic literature search and narrative literature review, the research consisted of four phases:

Key Findings



Focus Group data revealed many similarities and several differences in the perceptions of the significance of ethnic and gender identity, ideas about menstruation, motherhood and fertility across the ethnic groups and also within them.

Interview data revealed many similarities with research carried out with dominant ethnic communities: a lack of awareness of endometriosis prior to diagnosis; delay in diagnosis; a life of pain; severe impact on relationships and on working life. There were, however, many instances where the specific cultural or religious context emerged as a significant element of the experience of endometriosis. For example: Interviews with health professionals indicated varying degrees of knowledge and concern about the impact of ethnic identity on endometriosis. All expressed the view that it was important to treat patients as individuals, rather than focus on ethnicity. Nurses were more likely to acknowledge the potential impact of culture on access to care and experience of care, though this was often done in somewhat stereotypical ways. Consultants explicitly argued that women’s concerns were primarily around getting a diagnosis and appropriate treatment to relieve their pain and address any fertility concerns. Ethnic origin was not perceived to be of major importance, though some ethnic differences were identified, and poor communication with people whose English is not good was seen as a problem.

Expected Impact



The findings from the study and the information materials produced should lead to greater awareness of endometriosis among the communities, and to more culturally sensitive care by health professionals.

Conclusions



Cultural values around a gendered condition such as endometriosis may provide barriers to seeking and receiving culturally sensitive care, which health professionals need to take into consideration when planning and providing health services.

A copy of the executive summary of the project is available on the News Page and the final report will be available in due course.
For details of the resources produced by the project please see the Resource section of this website