Young peoples experiences when active cancer treatment ends

Background
The end of active treatment is known to be a period of high stress in young people’s cancer timeline but little is known about young people’s experiences in this transition phase. This study aimed to understand the experiences and needs of young people at the end of treatment (EoT), how these are currently being met, and how best to provide support to young people.
Methods
This was a multi-stage, mixed methods study, conducted from January to December 2018, exploring the EoT experience from the perspectives of young people and healthcare professionals caring for them. This paper reports on the EoT experiences of young people (n = 11), all within 12 months of EoT, who participated in semi-structured telephone or face-to-face interviews. Interviews were transcribed and analysed using thematic analysis.
Results
Three key themes emerged from the data relating to young people’s experience of ending active treatment: 1) Challenges with social reintegration; 2) Expectations versus the reality of ending treatment; 3) Sudden loss of the safe “bubble” of treatment. Some young people reported feeling isolated from their peers after they finished treatment, feeling they no longer belonged to previous peer groups. Young people reported challenges in managing both their own expectations and expectations of others about how they would feel at the end of treatment, versus the reality of how they actually felt both physically and psychosocially. They did not expect to experience onerous ongoing physical issues including pain, nausea and fatigue. Additionally, young people experienced a range of conflicting emotions: excitement, happiness, nerves, fear, shock, surprise and uncertainty. They described realising they were no longer regularly surrounded by healthcare professionals, and feared the loss of the familiar routine of regular hospital visits.
Conclusions
End of treatment is a transition that results in changed relationships, routines, assumptions and roles. Young people often lacked awareness of and were under prepared for this. Having a better understanding of the unpredictable and ongoing nature of both physical and psychosocial issues they may face at the EoT would be beneficial, as would reassurance that challenges during this transition period are both acceptable and expected.