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LGBT+ study: differences in screening experiences and participation

By Lynn Swinburne, Senior Health Promotion Officer, Public Health Department, National Screening Service

Our recent study was to examine the knowledge, attitudes, participation and experiences of lesbian and bisexual women, trans men, non-binary and intersex people with a cervix in cervical screening in Ireland.

The thinking behind this study started when I presented the topic of HPV and cervical screening to a group in LINC, a lesbian and bisexual support group in Cork in 2019. I was struck by the depth of questions people had on all aspects of HPV, cervical cancer, and cervical screening.

Their desire for information, understanding and specifics pointed to a need to collaborate with and understand the needs of this group more. I decided after talking with LINC to develop a proposal on a research project and pursue funding. This study is now complete, with a set of recommendations and reflections.

From the beginning, it was important that we collaborated with the LGBT+ community so that participation would be as widespread and meaningful as possible. We held discussions with local, regional and national LGBT+ organisations. This led to us receiving the input of 450 LGBT+ people in this study, which surpassed our expectations.

The quantitative piece of this research showed that the overwhelming experience of cervical screening among LGBT+ people was positive. However, some reported difficult experiences in cervical screening including poor communication, inappropriate questioning, dismissal of previous experience, and personal commentary on their status. It showed we need to find ways to ensure our sample takers feel comfortable in their interactions with the LGBT+ community, and provide a holistic service to meet their needs in cervical screening.

Two thirds of the people in our study said they attend screening every time they were invited. However, this is short of the 80% national average screening uptake.

Why is this, and what can we do about it? Many referred to discomfort and past negative experience in cervical screening, sexual health and sexual trauma. It suggests that a good consultation with the person covering all the elements of cervical screening, along with an alert system that told the sample taker that the person is anxious for a particular reason, would make the experience a more positive one for the person, and hopefully ensure their return to screening when invited.

A total of 62% do not tell their healthcare provider their identity when attending for cervical screening. This can lead to difficulties as sample takers don’t know the full identity of the person, or how to address their needs.

The study found barriers to cervical screening for the LGBT+ community that included an assumption by some sample takers that the person being screened was heterosexual; and fear and embarrassment of the test procedure.

However, the research also showed what would encourage respondents to attend screening. The responses included: LGBT+-friendly practices; being able to book appointments online; being sent reminders by text; specialist LGBT+ clinics; and more flexible GP surgery opening hours.

What would an LGBT+-friendly service look like? Basic elements would include posters, images of LGBT+ people, and the use of more inclusive language. “You will feel welcome, safe and free to be out if you see yourself in these settings,” one stakeholder said.

It would also include staff training on good practice in providing services to the LGBT+ community; policies on inclusion and equality; and identity captured on GP databases and sign-up forms. In essence the community should feel safe to come out to trained people who can address their needs and have an open participative discussion about cervical screening and their wider sexual health.

All people with a cervix should be offered, invited and welcomed to participate in cervical screening. An acknowledgement that this is their right, and a requirement for their health protection, is central to ensuring equity in our services. Equality is about treating everyone the same, but equity is about providing the extra requirements to certain communities to ensure their participation can be enhanced, supported and furthered. We must ensure our services close the inequality gap not widen it, this is about doing more than treating everyone the same.

This project has helped me reflect how our assumptions and judgements affect those we work with.

Our unconscious biases need to be recognised, analysed, challenged and ultimately we need to move to a new perspective where our sample takers have increased opportunity for positive contacts with the LGBT+ community in a supportive environment.

The LGBT+ Cervical Screening Study is being designed, and will soon appear on www.screeningservice.ie

 

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