Difficult Conversations? Addressing sexuality and intimate relationships in AYAs with serious illness

Key Message: PPC practitioners need skills in addressing concerns and information needs regarding romantic and sexual relationships in the AYA population. This session we offer guidance for improved communication, early interventions, specialized care and care coordination, and psychosexual support, including for emerging gender identity and sexual preference.

Abstract: Pediatric Palliative Care (PPC) focuses on improving the quality of life for youth with life-limiting illness. Sexual health and intimate relationships are integral to overall health and quality of life for many adolescents and young adults (AYAs), and they can be negatively impacted by chronic illness and associated treatments. Further, the AYA population may be sexually active in ways that PPC practitioners may not routinely ask about.
Sexuality and sexual health care needs are often overlooked in AYAs receiving palliative care, but data show that adolescents with chronic illness have similar levels of sexual behaviors and sexual health outcomes as healthy adolescents (Barrett et al, 2025). Adult palliative care literature suggests that despite patients wanting to discuss sexual health and intimacy, palliative care providers fail to initiate conversations to explore sexuality and intimacy. (Hordern, 2007; Kelemen, 2016, 2022).
PPC requires practitioners to advocate for and provide culturally humble and responsive care(Thompson et al., 2023). PPC professionals might be uncomfortable with initiating conversations about youth sexual health and intimate relationships because it’s too personal, too risky given limits of confidentiality, or feel insufficiently trained to address these topics. However, the competent practice of PPC requires careful assessment of and intervention regarding this dimension of AYA health.
In this session, we will address sexual health and romantic relationships with the AYA palliative care population. We will recommend assessments, open communication, early intervention (including sexual health screening, fertility concerns and emotional distress, support for body image concerns), specialized care and care coordination (e.g., with endocrinology, gynecology, etc.), and psychosexual support. We support for youth navigating romantic relationships, including concerns about sharing prognosis and disclosing their health history, By proactively addressing sexuality and intimacy, PPC professionals assist AYAs navigating challenges associated with serious illness and sexual health in support of optimal quality of life.

References: 1. Caroline Barrett, Elizabeth Shih, Johanna B. Warren; Adolescent Sexual Health: A Focus on the Sexual Health Portion of HEADSS Examination. Pediatr Rev May 2025; 46 (5): 235–244. https://doi.org/10.1542/pir.2024-006556
2.Hordern AJ, Street AF. Communicating about patient sexuality and intimacy after cancer: mismatched expectations and unmet needs. Med J Aust. 2007 Mar 5;186(5):224-7. doi: 10.5694/j.1326-5377.2007.tb00877.x. PMID: 17391082.
3. Kelemen A, Cagle J, Groninger H. Screening for Intimacy Concerns in a Palliative Care Population: Findings from a Pilot Study. J Palliat Med. 2016 Oct;19(10):1102-1105. doi: 10.1089/jpm.2016.0092. Epub 2016 May 5. PMID: 27148898.
4. Kelemen A, Van Gerven C, Mullins K, Groninger H. Sexuality and Intimacy Needs Within a Hospitalized Palliative Care Population: Results From a Qualitative Study. American Journal of Hospice and Palliative Medicine®. 2021;39(4):433-437. doi:10.1177/10499091211036928
5. Amanda L Thompson, Megan R Schaefer, Sarah R McCarthy, Aimee K Hildenbrand, Melissa K Cousino, Meghan L Marsac, Jill Majeski, Karen Wohlheiter, Rachel A Kentor, Competencies for Psychology Practice in Pediatric Palliative Care, Journal of Pediatric Psychology, Volume 48, Issue 7, July 2023, Pages 614–622, https://doi.org/10.1093/jpepsy/jsad007