Exploring Young People’s Experience of Ending Active Cancer Treatment

When the “Little Cancer Treatment Bubble” Pops

Abstract

Background 

The end of active cancer treatment is described as a stressful period for adolescents and young adults (AYAs). However, research evidence describing the experience of AYAs as they transition from active treatment into follow-up care is scarce.

Objective 

We aimed to understand AYAs’ experiences within the first 12 months of ending active treatment.

Methods 

Data were collected using semistructured interviews, which were digitally recorded and transcribed verbatim. Qualitative analysis of transcripts was used to identify key themes/subthemes.

Results 

Eleven AYAs (8 female participants), diagnosed with cancer aged 17 to 25 years and 19 to 26 years at point of interview, participated. At time of interview, 7 were within 6 months of treatment completion, and in 4 participants, treatment ended 6 to 12 months prior. Three main themes were identified: (1) challenges of social reintegration and self-identity, (2) expectations versus the lived experience of ending treatment, and (3) sudden loss of the safe “bubble” of treatment.

Conclusions 

Adolescents and young adults were underprepared for and challenged by the unexpected emotional and physical consequences of ending active cancer treatment.

Implications for Practice 

Young people require information and support to prepare for ending active treatment and reintegration to everyday life. Preparation for the short- and long-term physical, social, and psychological impact of a cancer diagnosis even when treatment ends will assist young people in managing this transition. Further research is required to develop and test interventions to provide timely, structured, and equitable information and support at the end of treatment to better prepare AYAs for the challenges they may face as treatment ends.