“You’re too young for this”: Adolescent and Young Adults’ Perspectives on Cancer Survivorship

Abstract

Adolescent and young adult cancer survivors face unique challenges not systematically addressed by cancer clinicians. Four focus groups and two individual interviews were conducted with 19 survivors to profile experiences and identify key concerns for future interventions. The resultant themes reflect cancer care continuum challenges (such as delays in diagnosis, problems with adherence), psychosocial concerns (such as infertility and reproductive concerns, changing social relationships, financial burden), and the paradox of being diagnosed with cancer as a young adult. Future intervention development for adolescent and young adult survivors should involve patient voices at each stage of the research process.

The Adolescent and Young Adult with Cancer: A Developmental Life Course Perspective

“…,10 This period of intense physical, cognitive, and emotional development renders individuals at risk for a range of short-and long-term psychosocial challenges, such as difficulty maintaining an active and independent life, coping with treatment-related side effects and stress, accepting cancer and maintaining a positive attitude,11 reentering school or the workforce, and maintaining and/or developing new relationships. 6 Providing high quality care to the AYA with cancer requires an understanding of the complexity of factors that merge to influence the functioning of the individual and family.factors that interact with an individual's developing biological and behavioral capacities 12.…”

Anticancer chemotherapy in teenagers and young adults: managing long term side effects

“…51 Social isolation is also observed among TYA cancer survivors, who may wish to connect with other TYAs with similar experiences. 52 However, this may cause negative psychological effects if peers relapse or die.…”

“…TYAs may also wish to access self help groups or online peer support to connect with cancer patients or survivors of a similar age, as well as benefit from advice on how to discuss their diagnosis with others. 52 US data suggest there is inadequate provision of psychological support to serve the needs of TYA cancer patients, 54 although corresponding UK data are lacking. The UK National Institute for Health and Care Excellence (NICE) recommends psychosocial needs assessment for patients up to the age of 24 years, and for their families or carers, and to offer appropriate specialist support at "key points" of care including long term follow-up, 55 as well as early referral to fertility services.…”

Adolescent and Young Adult Cancer: Principles of Care

“…Establishing peer and intimate relationships is a key developmental task; however, ayas report negative effects of cancer on those relationships 24 . Oncology peer support is identified as significant for ayas, and a review of aya peer-support interventions encourages their establishment within aya environments 25 .…”