DENVER, CO—The emotional trajectory of the cancer experience compounds the emotional pendulum adolescents and young adults (AYAs) are already experiencing as their cognition, hormones, and emotions mature. Delivery of high-quality cancer care for these patients requires understanding the behavior, social, and environmental context of their lives, explained Brad Zebrack, PhD, MSW, MPH, of the University of Michigan School of Social Work, in his presentation at the 2015 Oncology Nurse Advisor Navigation Summit.
Social and developmental context of emerging adulthood challenges care and communication with this population. Their brain is still forming and cognition developing; their health behaviors are being reinforced by peer and adult interaction, their emotions are still regulating, hormones are raging, and social roles and relationships still being defined. “It’s not easy being a teen. Did you ever ask ‘Why’d you do that?’ and be told ‘I don’t know.’” Zebrack said. “And they really don’t know. They really don’t.”
During the teenage years, people are establishing their independence and forming their identity. Peer relationships and social interaction with peers are important for healthy growth and development. The process of maturing requires being able to reconcile information from adults and peers. Cancer disrupts all that, and interrupts the phases teenagers go through as they seek out their identity.
Medical environments don’t fit where AYAs are emotionally. Patients ages 13 to 39 years may be in pediatric units with children’s characters or animals on the walls, or in adults units with patients closer to their grandparents’ age. AYAs may be intimidated by health care professionals as they have a lack of experience with health care and illness. Furthermore, mistrust may develop when early symptoms are not taken as cancer, and patients may be told “you’re too young to have cancer.” When a cancer diagnosis is ultimately made, AYAs feel betrayed by medical professionals.
After treatment is complete, their relationships with their parents and social peers change. Parents may be overprotective. Teenagers may feel different from their peers. As they begin dating, they struggle with who to tell, how much to tell, and fear of rejection. AYAs are coping with life disruptions with longstanding impact such as infertility, sexual dysfunction, and physical disfigurement at a time when they are just learning to develop relationships. Sex and sexuality is a part of their relationships, and either is or will be part of their lives.
Parents and friends help, but may offer few opportunities for AYAs to ask questions, process their feelings, or developing coping strategies. Psychosocial interventions are available, but few AYAs report receiving or using psychosocial care. Asked at the beginning of treatment if they would like to talk to a psychiatrist or therapist, teenagers are likely to say no, Zebrack explained. But when asked again at the end of their treatment or 1 year after treatment, they are more likely to accept the help, even wonder why they didn’t accept it earlier.
NCCN Guidelines for AYA oncology suggest a comprehensive, age-appropriate assessment, fertility preservation, address socioeconomic issues, psychosocial/behavior considerations, survivorship, palliative care/end-of-life considerations, and offer resources. These patients seek acceptance, help solving problems and making decisions, support, normalcy, and physical and social activity.
A framework for providing AYA oncology is to help them maintain activity and independence, encourage them to seek and understand medical information, and learn stress management and coping techniques for dealing with treatment-related side effects. They may need help accepting their illness and adapting to limitations. They need to be encouraged to seek support, both emotional and psychosocial.