Research project
Title: Endometriosis and cultural diversity: Improving services for minority ethnic women
Project timescale: From 01 December, 2007 to 30 May, 2010
(Added to website on: 26 February, 2012 - Date last updated: 26 February, 2014)
Source of funding:
Research for Patient Benefit (RfPB) Programme (NIHR)
Aims: 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. To develop and pilot culturally appropriate information resources for women with endometriosis, in English, Chinese, Greek, Gujarati and Urdu
Research designs used:
Study of views/experiences
Other:
Methods used to collect data:
Focus groups
Interviews
Other (please specify):
Research project description: (1) 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 (n= 42). (2) Semi-structured, in depth interviews with a sample of women aged 18-50 with a clinical diagnosis of endometriosis, (n= 29). Interviews explored their experience of living with endometriosis and access to healthcare and support. (3) 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, and their information needs regarding culturally appropriate patient care. (4) 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.
Stages at which the public were involved:
Managing the research
Writing about the research eg
publications, newsletters
Disseminating research
Seeking funding / applying for funding
Assisting in finding and designing appropriate
ways of approaching participants
Prioritising topic areas
Other:
Description of public involvement in research stages: Endometriosis UK and the Endometriosis SHE Trust were consulted on the need for the project. Community facilitators from the ethnic groups represented in the study were recruited and trained by the research team to organise and conduct the focus groups, and were involved in the development of the interview schedule. The focus groups were conducted with women from the target communities who reported community values and customs around reproduction, sexuality and menstruation. These insights informed the rest of the project. Representatives from the target communities were recruited to the project advisory board. The community facilitators and the advisory group members were asked to comment on and adapt the themes that emerged from analysis of the focus groups, adding rigour to the analysis of data. The community facilitators and interviewees from the five communities were actively involved in the production of resource materials, in particular linguistic and cultural sensitivity.
Training and support provided for either members of the public or researchers involved in the project: Training for the FG facilitators was given by the research team on endometriosis, the research project, and facilitating focus groups. This was conducted before the start of the project.
Examples of ways the public have made a difference to the research project: Ensuring that the research process was culturally and linguistically sensitive. Ensuring that the research team understood cultural aspects of reproduction and womanhood for each of the ethnic groups in the study. Ensuring cultural and linguistic sensitivity of the resources developed.
Evaluating the impact of public involvement in the research: No
Details of publications or reports resulting from the research: The final report from the project and the lealfets produced may be obtained from the Project website or the Chief Investigator.
Links to Reports:
Final Report
Was/is your project user controlled: No
For further information on the project, please contact:
Prof Elaine Denny
Chief investigator
Birmingham City University
Birmingham City University
Edgbaston
Birmingham
W Midlands
B15 3TN
United Kingdom
elaine.denny@bcu.ac.uk
1213316035
Website: www.bcu.ac.uk
Prof Lorraine Culley
De Montfort University
lac@dmu.ac.uk
441213316035
Website: www.bcu.ac.uk
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