Research investigating the impact of cancer upon sexuality, both physically and psychologically, has for the most part focused on the needs of adults. For adolescents and young adults with cancer, however, understanding the impact of cancer upon their psychosexual well-being is incredibly important. A cancer diagnosis during the AYA years may come at a time when a young person is establishing their sense of identity, forming intimate relationships, and becoming autonomous.1 Cancer can make these milestones a little more difficult to reach.
A study recently conducted by Dobinson et al. (2016) aimed to investigate the types of unmet psychosexual needs being experienced by AYA cancer survivors in Australia. By psychosexual, we were interested in the physical and psychological aspects of sexual well-being, which included topics such as sexual dysfunction, body image, sexual identity, sexual communication, and more.3, 4, 5 After speaking with eleven AYA cancer survivors living in Australia who had experienced a range of cancer diagnoses (such as breast cancer, leukemia, ovarian cancer, and testicular cancer), we were able to discuss not only the types of psychosexual unmet needs that were remaining unmet for these survivors, but also several factors that may have contributed to the onset or maintenance of these unmet needs. These factors of onset and maintenance, as well as the various types of unmet needs were understood through a theoretical model described as the “Pathways to Problems” model.
Perhaps the most interesting finding to emerge from the interviews was that AYA survivors expressed experiencing a form of “identity conflict”, described as a mismatch between their chronological age and how old they felt, specifically regarding sexual aspects of the self. For some participants in the study, they felt a sense of “regression to childhood”, a concept that was explained as cancer “interrupting sexual development”.6 These participants described a sense of missing out on some of the milestones their healthy peers may have been engaging in, such as establishing intimate relationships throughout high school. Spending large amounts of time in hospital with older adults combined with limited independence meant that some AYA survivors felt some of their sexual milestones remained unmet.6
For other participants, receiving a diagnosis during early adulthood had the inverse effect, whereby they felt older than their actual age due to changes in psychosexual facets of life. These individuals shared common experiences, such as noticing a decrease in sexual activity, due to physical and/or psychological impacts of cancer diagnosis and treatment. Having to confront their own mortality, feeling less attractive and a shift in priorities meant that some participants felt their sexual identity fitted more with that of an older adult, despite their chronological age being that of a young person.6
The interviews revealed six types of psychosexual unmet needs experienced by some of the AYA survivors in the study. These included fertility concerns, sexual communication, dealing with side effects, relating to other AYAs, dating & disclosure, and reconciling the notion of identity conflict.6
It is important to note that not all participants experienced psychosexual unmet needs. It was pleasing to hear that some participants found that cancer didn’t impact their psychosexual wellbeing negatively. Factors such as an older age at diagnosis, a less advanced cancer, less invasive treatment and increased support from partners were more common among individuals who did not experience psychosexual unmet needs.6
The study concluded that many psychosexual unmet needs among young cancer survivors, such as fertility concerns, sexual communication, dealing with side effects, and dating and disclosure, are also unmet needs among older adult survivors.6 However, unmet needs unique to AYA survivors, such as relating to other AYAs and reconciling identity conflict, raise important considerations for survivorship care.6 It is important to consider the self-perceived age of the individual, not only their chronological age, when looking to assist with survivorship care in psychosexual domains.
This study provided some new insights into how AYA cancer survivors navigate their sexual selves following their journey from diagnosis to survivorship. The model described in this study may assist in identifying young cancer survivors who may require additional information or support regarding psychosexual needs, as well as highlighting the resilience of AYA cancer survivors.
Link to the study: http://online.liebertpub.com/doi/abs/10.1089/jayao.2015.0022
- Zebrack BJ. Psychological, social, and behavioural issues for young adults with cancer. Cancer. 2011;117(10 Suppl): 2289–94.
- Bellizzi KM, Smith A, Schmidt S, et al. Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer. 2012;118(20):5155–62.
- Rowland JH. Developmental stage and adaptation: adult model. In: Handbook of psychooncology. Holland JC, Rowland JH (Eds); New York: Oxford University Press; 1989; pp. 25–43.
- Strong B, DeVault C. Human sexuality. Mountain View, CA: Mayfield Publishing Company; 1994.
- Bober SL, Varela VS. Sexuality in adult cancer survivors: challenges and intervention. J Clin Oncol. 2012;30(30): 3712–19.
- Dobinson KA, Hoyt MA, Seidler ZE, et al. A grounded theory investigation into the psychosexual unmet needs of adolescent and young adult cancer survivors. J Adolesc Young Adult Oncol. 2016;5(2):135–145.
Katherine (Katie) Dobinson is a Master of Clinical Psychology student and Registered Provisional Psychologist studying at The University of Sydney, Australia. She completed her Bachelor of Psychology (Honours) at The University of Sydney in 2014. Her honours thesis focused within the area of psycho-oncology, investigating the psychosexual unmet needs of adolescent and young adult cancer survivors.
Katie has extended her research interests in AYA psycho-oncology through her previous role volunteering in the Research, Evaluation and Social Policy team at CanTeen Australia from 2015 to 2016.
Katie has experience in the community mental health sector, working as a Mental Health Worker for RichmondPRA in 2015. Her professional areas of interest include adolescent and young adult mental health, psycho-oncology, anxiety disorders, eating disorders, and family-based interventions. Katie is currently studying full-time, and working casually in a research assistant position at the Black Dog Institute. She is particularly interested in qualitative research methodologies, and wishes to work in a variety of clinical settings in the future, as well as gaining experience in family therapy.