“The Most Important Thing is That You Are Not Left Alone”—A Qualitative Study of Challenges and Needs of Adolescents and Young Adults with Cancer

Abstract

Purpose:

We aimed to gain in-depth insights into the challenges and needs of adolescents and young adults with cancer (AYA) throughout their disease to detect increased needs for support.

Methods:

We conducted face-to-face interviews with 15 patients 18–39 years old at the time of diagnosis of malignancies who had completed treatment at the time of the interview. The interviews were analyzed using content analysis.

Results:

The unexpected diagnosis of a serious illness shocked the participants, especially since many were in a life phase of transition at that time and had little knowledge about cancer and its therapy. They reported feelings of helplessness, unfairness, and insecurity triggered by side effects, divergent information from health care professionals (HCPs), or lack of information. After the end of the therapy, many AYAs were challenged by prolonged changes in their lives since they gained strength from the hope of returning to “the life before.” The primary needs were social and psychological support, connecting with peers, orientation, and guidance.

Conclusion:

AYAs face special challenges requiring support and guidance from HCPs that should extend beyond the end of the therapy. There is a need for exchange opportunities with other AYAs.

Trial Registration Number:

DRKS00030277 (German Clinical Trials Register); September 27, 2022.