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 per cent 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 five and 15 per cent 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 was the first UK study which has explored the ways in which minority ethnic women experience endometriosis and its treatment.
The aim of the project was 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.
The objectives of the research were to:
- Elicit cultural meanings of reproduction and sexuality and the potential impact on access to services using community focus group discussions
- Explore the impact of the socio-cultural context on understandings and experience of endometriosis, for women of African Caribbean, Chinese, Greek/Greek Cypriot, Indian and Pakistani ethnic origin
- Develop and pilot culturally appropriate information resources for women with endometriosis in English, Chinese, Greek, Gujarati and Urdu
- Develop and pilot 'good practice' guidance in the provision of culturally competent care for providers of endometriosis services in primary and secondary care.
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:
- Focus groups with women from each of the minority ethnic communities included in the study to elicit community perceptions of endometriosis and related constructs of menstruation, fertility and motherhood. Five focus groups were held with women aged between 18 and 50 years (n=42)
- Semi-structured, in-depth interviews with a sample of women aged 18 to 50 with a clinical diagnosis of endometriosis, (n=29). Interviews explored their experience of living with endometriosis and access to healthcare and support
- Semi-structured interviews with a sample of health professionals providing care for women with endometriosis (n=8) to explore their perceptions of the needs of minority ethnic patients, understandings of the socio-cultural background of patients and their own information needs regarding culturally appropriate patient care
- Using the data obtained in the previous phases of the research and advice from community groups, user representatives and the project advisory group members, resource materials for patients and service providers were developed and piloted.
The project had a virtual advisory group which included representatives of the ethnic groups in the study and from self-help groups, as well as experts in qualitative research, ethnic health and inequalities. The advisory group advised on each stage of the study and ensured that the research proceeded in a way that was ethically sound, upholding citizen's rights to confidentiality and anonymity throughout the project.
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.
- The role of women as mothers and homemakers was evident as a key part of women's identity in all of the groups. However, some women felt that they had more power and control in the conduct of their lives generally than others, with the African Caribbean women viewing themselves as having most control, and Pakistani women least
- Many of the women in all groups thought that women would tend to normalise severe period pain, and thought that fertility problems rather than pelvic pain would be the most likely spur to seeking professional help
- In the communities where there was a strong emphasis on motherhood, childlessness (whether voluntary or involuntary) was heavily stigmatised. In the African Caribbean community where women reported more acceptability of voluntary childlessness, infertility was nevertheless stigmatised in a similar way
- Very few women in the focus groups had heard of endometriosis.
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, and a severe impact on relationships and 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:
- Pakistani, and to a lesser extent, Indian women found it difficult to discuss gynaecological issues within the family, and described how suspicion could be raised about the cause of gynaecological problems. Pakistani women expressed concern about the potential impact of extensive internal examinations on proof of virginity (essential to marriage) and concern that if a woman had treatment with oral contraception (a common treatment for endometriosis) this might be interpreted as her being sexually active, which would also compromise marriage prospects
- Greek women were open about discussing menstruation within the family and with friends. They were also open about dyspareunia, and did not object to being examined by male health professionals. Being treated with respect by staff was more important to them
- The Chinese women valued privacy very highly, were more circumspect about discussing any personal issues with health professionals and placed great importance on confidentiality
- With the exception of the Chinese community, the majority of women spoke of their religion as being important to them. They or their family members carry out religious rituals or go on pilgrimages in order to help alleviate the symptoms of endometriosis or to try to achieve a pregnancy. Most find comfort in their faith
- In common with other women with endometriosis, women in this study reported instances of both positive and negative interactions with individual healthcare providers. Some of their negative experiences were related to cultural insensitivity or misunderstandings; however women were also concerned with health professionals' general insensitivity to their symptoms
- Most of the women in this study were competent English speakers, but several expressed concern at the lack of adequate communication support for those with lower proficiency in English, and many commented on the failure of consultants to fully explain procedures in easy to understand terminology.
Findings from health professionals
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.
The ENDOCUL project has produced a series of leaflets on endometriosis, each specifically tailored to one of the communities involved in the project. The project team have also prepared a short online presentation for health professionals with information about cultural diversity and endometriosis.