Looking Back and Looking Ahead: Experiences of Young Adult Cancer Survivors during the Transition from Active Treatment to Survivorship Care

Background & Purpose: The unique challenges and concerns facing adolescent and young adult cancer patients (AYA) persist beyond diagnosis and treatment (Quinn, Goncalves, Sehovic, Bowman, & Reed, 2015). AYAs transitioning into follow-up care identify concerns related to finishing treatment, health problems, and future life directions (Thompson, Palmer, & Dyson, 2009). This study was designed to identify aspects of social functioning that are most challenging for AYAs during this transitional phase in the cancer care continuum.

Methods: Semi-structured qualitative interviews were conducted with young adult cancer survivors (N=13, aged 17-25 years at time of diagnosis) to assess their social functioning during transition from active treatment to post-treatment survivorship care, and again 3 months later. Applied thematic analysis (Guest, MacQueen, & Namey, 2012) was used to identify themes from participant interviews. The codebook was revised and transcripts were re-coded until 88% intercoder reliability was reached.

Results: Among the six key themes and twelve sub-themes that emerged from this interview data, there were two sub-themes related to the key theme of post-treatment experiences including “Trying new things to cope with losses” and “Managing expectations with realities”. Participants described looking forward to treatment completion and returning to “normalcy”. In follow-up interviews, participants described a mismatch between how they imagined things would be after completing treatment and the reality of the challenges they continued to face in their daily lives. Participants emphasized looking ahead to the future and trying new things. Some participants took trips or participated in new recreational activities upon treatment completion. Age appropriate young adult transitions, such as finding a job, making new friendships in college, and moving in with a romantic partner become more stressful when complicated by ongoing physical and psychological treatment effects. 

Conclusions & Implications: Losses experienced during treatment and changes in social identity cause more uncertainty about social re-integration post-treatment. Potential challenges with navigating post-treatment transitions, such as returning to college, discussing their cancer diagnosis and treatment with peers, finding employment, managing ongoing health concerns and follow-up medical care, and maintaining health insurance should be discussed with patients early and often in the care trajectory. Throughout the care trajectory, opportunities to stay involved socially in extracurricular activities with their peers and to participate in developmental milestones should be fostered.