More Support for IBD Gay and Lesbian Community
Researchers at the Florence Nightingale School of Nursing and Midwifery have recommended that more support and resources should be made available for gay and lesbian (GL) people suffering from inflammatory bowel disease (IBD). The study, which was commissioned by national registered charity Crohn’s & Colitis UK, looked at the issues and concerns related to IBD that specifically affect the GL community, and explored how their needs differed from those of non-gay people with IBD.
The two most common types of inflammatory bowel disease, Crohn’s disease and ulcerative colitis, affect around 1 in every 250 people in the UK. Typical symptoms include uncontrollable diarrhoea, fatigue, joint problems and severe pain. Most commonly diagnosed in young people under the age of 25, they are chronic, lifelong conditions for which there is currently no cure.
Christine Norton, Professor of Clinical Nursing and Innovation at King’s College London, said:
“While the physical impact of IBD is largely the same for GL and non-gay communities, there are some notable differences in the social and psychological affects these diseases have on GL people. A major finding from our study was that there is a clear parallel between the experience of coming out about sexual identity and coming out about IBD – both being very personal and intimate areas of a person’s life. The people we spoke to said they used some of the same techniques to explain to family and work peers about both identities. There could be real potential to draw on these coming out skills to help anyone with IBD, regardless of sexual orientation, to share information about their illness with others.”
As part of the study, Professor Norton and Lesley Dibley, Research Associate, surveyed over 50 people and interviewed over 20.
Professor Norton continued:
“The heteronormative culture of the NHS was key issue in how GL people experience care for their IBD. Several of the people we spoke to said they had experienced difficulties in having their partner fully involved in their medical and nursing care, especially with physical support when in hospital such as hand holding and hugging, because they are worried about creating an atmosphere with other patients. Healthcare staff often gave misguided advice and comments based on the assumption that patients will have opposite sex partners.”
Lesley Dibley, Research Associate and Principal Investigator on the project, said:
“Some of our participants expressed concerns about people assuming there is an association between their sexual activity and bowel disease. There is currently no tailored information or advice for gay and lesbian people around safe sexual practice, particularly following surgery and many of our participants expressed concerns about the impact their IBD was having on their relationship.”
Based on the findings of the study, the researchers have made several recommendations to Crohn’s and Colitis UK. Helen Terry, the charity’s Director of Information and Support, said:
“The report has provided us with some excellent insight into how we can better meet the needs of gay and lesbian people. We provide support and resources across a range of issues but perhaps more importantly than that, we know our members value a sense of community that comes from knowing there are others like them. It is essential that GL people are given the same sense of community, and we are now looking at ways we can enable peer support and provide tailored information and advice.”