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

Impact of discrimination

Research shows young LGBTQ+ people experience significantly higher levels of distress during cancer care than older LGBTQ+ adults and non-LGBTQ+ adolescents and young adults¹. The research suggests many young people fear their sexuality or gender identity could lead to healthcare professionals treating them differently.

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

Lauren Snaith, a former campaigns manager at Teenage Cancer Trust, says: "Higher distress and lower satisfaction with care are due to greater experience of discrimination in cancer care. 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-LGBTQ+ people," she says.

Patient picks for Information about cancer

Cancer

Supporting a loved one with a cancer diagnosis

Dealing with a cancer diagnosis can be tough at the best of times, but even more so in the current climate. If a friend or family member is diagnosed or undergoing treatment during this difficult time our instincts will be to help. But with visits possibly out of the question, how can we offer appropriate support without risking a loved-one's health?

by Gillian Harvey

Cancer

Stages of cancer

If left untreated, cancers often go through three stages: local growth, spread to lymph channels and spread to other areas of the body.

by Dr Toni Hazell

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 LGBTQ+ identity" and made it difficult to meet other LGBTQ+ 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 LGBTQ+.

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 misinformation².

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-perception³.

How to improve cancer care for young LGBTQ+ people

According to the Out with Cancer research, there are several ways to improve the experiences of young LGBTQ+ people during cancer care.

Don't make assumptions

Firstly, it is essential for healthcare workers to avoid making assumptions about patients regarding their sexuality or gender identity.

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

Have visible signs of inclusivity

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

Use inclusive language

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

Signpost people to relevant support

Signposting young LGBTQ+ 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.

Further reading

1. Western Sydney University: Out With Cancer study.

2. Johnson et al: Cancer misinformation and harmful information on Facebook and other social media: A brief report.

3. Warner et al: Cancer content and social media platform influence young adult cancer caregivers’ social support on social media.