Children and young adults are on an important—and continuous—journey to establish their identity to themselves, families and social peers. This journey includes sexual orientation, gender identity and gender expression.
These issues are very personal and differ from person to person. During cancer, the discovery process is often more complex.
Understanding LGBTQ Terms and Definitions
LGBT stands for lesbian, gay, bisexual, and transgender. LGBTQ expands the community to include those who identify as queer or are questioning their sexual orientation or gender identity.
- Lesbian: Refers to a person’s sexual orientation, specifically females with sexual attraction or romantic behavior focused on other females.
- Gay: Refers to a person whose sexual attraction and/or romantic behavior focuses on members of the same sex or gender identity. A personal or social identity may be based on a person’s same-sex attraction and membership in a sexual minority community.
- Bisexual: Refers to a person whose sexual or romantic attractions and behaviors engage with both sexes.
- Transgender: Refers to people whose gender identity or gender expression differs either from their birth sex or from prevailing ideas of masculinity and femininity.
- Queer: Refers to an inclusive and self-affirming umbrella term for people who are a non-heterosexual sexuality or gender identity. However, this term remains offensive to some people.
- Questioning: Refers to individuals who are exploring their gender, sexual identity, sexual orientation, or all three. People who are questioning may be unsure, still exploring, and concerned about applying a social label to themselves for various reasons.
The LGBTQ Community and Health Care
As a profession, health care is becoming increasingly sensitive to the unique challenges faced by the LGBTQ community. Several trusted medical associations have issued important guidance to providers and hospitals as public discourse has increased on LGBTQ issues.
In the early 1980s, the American Academy of Pediatrics (AAP) issued its first guidance on treating sexual minorities and has revised and updated its guidance to providers every decade since. Today, the AAP urges pediatricians and specialists caring for children and youth to:
- Create offices that are friendly to sexual minority youth.
- Use non-biased language and create a safe environment for LGBTQ patients.
- Encourage respectful, open communication between providers and patients. This increases the likelihood that patients will share important physical, sexual, and mental health information and history throughout their cancer journey and improve the quality of care.
- Address the full range of health conditions and needs experienced by LGBTQ children and youth.
The Joint Commission, a health care accreditation organization, has also issued guidance urging hospitals to create more welcoming, patient-centered environments for LGBTQ patients. Specifically, this guidance urges providers to deliver the same patient-centered care to LGBTQ patients that is the gold standard for the treatment of all patients. This includes care delivered with compassion, empathy and responsiveness to the needs, values and expressed preferences of the individual patient.
In response to this guidance and growing public discourse on LGBTQ rights and concerns, many hospitals have established policies on caring for LGBTQ patients and provide training for staff on LGBTQ patient needs and rights. Families and survivors should inquire about these policies as they examine their options for treatment facilities.
Choosing a Treatment Center During Pediatric Cancer
Pediatric cancer families must make their decision on where to seek care based on a combination of factors, including access to cancer specialists and proximity to home. Some families may also wish to weigh a facility’s sensitivity to and awareness of issues related to sexual and gender identity.
In evaluating which treatment facilities may best fit the needs of a LGBTQ child, some questions to ask include:
- Hospital policy – Does the hospital have a formal LGBTQ policy? If so, ask to see a copy of the policy.
- Training – Has the hospital trained staff on LGBTQ issues? And if so, has it done a “grand rounds” training on LGBTQ issues? During grand rounds, doctors and other health care providers are presented with a patient case facing specific medical problems and treatment options. The case provides doctors with the opportunity to learn new skills in communicating with and addressing the full needs of patients.
- Expertise – Are there staff (social workers, psychologists, physicians) who have expertise in LGBTQ issues that can provide consultation and education to families and other staff members as needed?
- Specialists – Does the hospital have LGBTQ specialists and, if so, what positions do they hold (oncologist, social worker, nurse practitioner)? If not, are they willing to have a local endocrinologist experienced with transgender youth consult with the hospital oncologist?
- Preferred Name – If a patient is transgender, can the patient cite a preferred name when they register? Will key staff inquire about a preferred name? Having different options can be important as many transgender youth will want to gradually offer a preferred name as they develop trust with staff.
Finding Support Among the Care Team
Like pediatric cancer itself, the process of coming out as LGBTQ to one’s family, friends, and peers is a journey. A child or young adult may be at any point along the process. Building a trusted relationship with at least one member of the care team with whom the patient or family can discuss issues relating to identity is important.
Psychologists and social workers are trained on acceptance and have specific professional values and code of ethics that are LGBTQ affirming. But the patient may build a trusting relationship with a different member of the care team, such as an oncologist or nurse. What is important is that patients find someone they can trust.
Some of the important topics a LGBTQ patient may discuss with a trusted member of the care team during cancer include:
- Emotional health – What issues are they struggling with emotionally? The care team treats the whole patient and will work to get the right support and resources based on the specific situation.
- Sexual activity and exposure to sexually transmitted infections (STIs) – Sharing personal details of medical and sexual history that could compromise the immune system is critical to successful cancer treatment.
- Hormone therapy – If a patient is already undergoing hormone therapy to move toward sexual change, it is critical to alert the care team early on, so an appropriate personal care plan may be developed. Hormones may impact treatment.
Understanding Privacy Rights and Limitations
LGBTQ patients should confirm what information shared with a trusted member of the care team can remain private. A patient who has not come out as LGBTQ to their parents needs to be aware that information captured on the patient’s medical chart may be seen by a parent or caregiver.
Care team members want patients to trust them and communicate on important issues. At the same time, care team members have ethical and professional guidelines that dictate what they capture on the medial record. If the patient wishes for information to remain confidential, they must request a private conversation. Any information the patient wishes to keep private must not be recorded in the medical chart.
LGBTQ patients should ask the following questions:
- Will my gender orientation or identity information be included in the medical health record?
- How will gender orientation or identity information be used?
- Under what circumstances will my gender orientation or identity information be disclosed?
- Which providers will see this information?
- Will caregivers see this information?
- Will insurance or health care coverage companies have access to this information? Could this information be used to facilitate discrimination?
LGBTQ During Survivorship
Most LGBTQ youth who survive cancer are resilient and emerge into adulthood as strong individuals. However, there are issues specific to the LGBTQ community that pediatric cancer survivors should keep in mind during adulthood:
- Finding trusted providers – LGBTQ adults often face disparities in health care that can impact both the level of care and outcomes. Members of the LGBTQ community should maintain close links to providers they know and trust throughout adulthood.
- Understanding risks for transgender survivors – Transgender survivors who have had sex reassignment surgery may face cancer risk to residual tissue that remains after surgery. For example, trans men may have a risk of breast or cervical cancer. Survivors should work with their provider to ensure appropriate cancer screening plans that address the issue of residual tissue as well as the potential impact of specific drugs such as estrogen, progestin, and testosterone taken during or after transition.
- Avoiding cancer-causing behavior – The LGBTQ community has a higher percentage of cancer than the general population. Members of the LGBTQ community are more likely to drink alcohol and smoke, both of which increases risk for cancer. Survivors should avoid these behaviors and seek support if necessary.
Resources for LGBTQ Youth, Parents and Survivors
In addition to seeking help and support from the patient care team, patients and families may find supportive resources online through the following sites:
- Advocates for Youth – This organization helps young people make informed and responsible decisions about their reproductive and sexual health and includes useful resources for LGBTQ individuals and families.
- The Center for Transyouth Health and Development – This organization provides services, research and training for gender non-conforming children and transyouth.
- PFLAG – With 400 chapters in nearly all 50 states, the District of Columbia, and Puerto Rico, PFLAG provides confidential peer support, education and advocacy to unite members of the LGBTQ community with family, friends and allies.
- LGBTQ Cancer Network – This organization provides an online directory of LGBTQ-friendly cancer treatment facilities across the United States, as well as LGBTQ-specific cancer information on a broad range of topics.
Many communities also have local organizations that focus on and support the LGBTQ community that can be found searching online.