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Why do young LGBTQI+ people have a poorer experience of cancer care?

Living with cancer can be very difficult. Not only can treatments take their toll physically, a cancer diagnosis can lead to anxiety, stress and low mood - as well as other challenging emotions like grief and anger. And for young LGBTQI+ people in particular, research suggests going through cancer care can be particularly distressing.

Impact of discrimination

Findings presented at the Adolescent and Young Adult Global Cancer Congress in December 2021 show young LGBTQI+ people experience significantly higher levels of distress during cancer care than both older LGBTQI+ adults and non-LGBTQI+ adolescents and young adults. The research suggests many young people fear their sexuality or gender identity could lead to healthcare professionals treating them differently.

For the research, titled Out with Cancer, 430 LGBTQI+ cancer patients were interviewed and surveyed alongside 357 health professionals. The results showed young LGBTQI+ people reported significantly lower satisfaction with cancer care due to discrimination, with 44% of adolescent and young adult LGBTQI+ cancer patients experiencing discrimination during treatment. Furthermore, 72% of transgender and non-binary patients reported being mistreated.

"Higher distress and lower satisfaction with care are due to greater experience of discrimination in cancer care," says Lauren Snaith, policy, services and campaigns manager at Teenage Cancer Trust. "Adolescents and young adults are less confident about the disclosure of sexuality or gender identity, and are fearful about receiving a negative reaction from healthcare professionals."

Discrimination can come in the form of negative or insulting comments, coldness or feeling dismissed, Snaith adds. "It can include partners being excluded from care, or the feeling that care is not equal to that offered to non-LGBTQI+ people," she says.

Less support

In addition, young people may have less life experience in terms of developing strategies to come out and deal with negative reactions, Snaith says. Those living with parents may experience parental hostility towards their sexuality or gender identity, meaning they receive less support at home.

According to the research, young people reported that cancer "challenged their LGBTQI+ identity" and made it difficult to meet other LGBTQI+ people too. "It may delay coming out to family and friends, which can cause distress," Snaith adds.

Young people may come across other challenges that accompany cancer too, such as problems with body image, mental health and emerging independence and autonomy. All of these can further compound the difficulties faced by adolescents and young people with cancer who identify as LGBTQI+.

False information online

Misinformation on social media can also contribute to a poorer experience of cancer care, particularly as young people are more likely to go online to find out about cancer. According to a 2021 report in the Journal of the National Cancer Institute, one in three popular cancer articles on social media platforms such as Facebook were found to contain potentially harmful misinformation.

This kind of information can be problematic in several ways. Young people may be given misleading nutrition or lifestyle suggestions for cancer treatment, or access incorrect information about their diagnosis. According to research, cancer misinformation on social media may also negatively influence adolescent and young adults' engagement in cancer care, relationships, and self-perception.

How to improve cancer care for young LGBTQI+ people

According to the Out with Cancer research, there are several ways to improve the experiences of young LGBTQI+ people during cancer care. Firstly, it is essential for healthcare workers to avoid making assumptions about patients regarding their sexuality or gender identity.

"Clinicians need to create a place of safety and inclusivity for LGBTQI+ patients and their carers," says Professor Jane Ussher of Western Sydney University, one of the researchers behind the Out With Cancer study.

"Have visible signs that you are LGBTQI+ inclusive, such as a rainbow flag in your waiting room, a statement about LGBTQI+ inclusivity on your service website, and include references to LGBTQI+ experience in patient information resources," she says.

"Don't assume that young cancer patients are heterosexual or cisgender. Give patients the opportunity to disclose their sexuality or diverse gender identity on intake forms, or in a safe way in a consultation."

Ussher also advises using inclusive language and to include same gender partners in consultations, if the patient wishes this. "Ask people what pronouns they prefer - he, she or they. Clinicians need to be aware that many LGBTQI+ people have a history of being discriminated against, and that this creates anxiety about how they will be treated in cancer care," she adds.

Signposting young LGBTQI+ people to organisations for legitimate information and inclusive support can help people avoid misinformation online. The charities Macmillan and Live Through This provide information and support. Additionally, it can help to recommend reliable online resources and warn young people of the dangers of false information on social media.

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