Cancer patients belonging to the adolescent and young adult (AYA) age group have unique and very specific needs, which require special attention from the caring staff. The difficulty in maintaining the personal and professional development at this age is both natural and normal. Adding to this, coping with a life-threatening disease turns this stage in life into a period with many dilemmas and challenges of quite a complex nature. AYA patients have to deal with issues above and beyond the disease itself, which create a very complex coping picture. On top of that, prognosis for this age group has not improved in recent years, unlike the situation in other age groups like children and adults. The literature on this subject is extensive and comprehensive. However, most of the papers on this subject are very specific and narrow in their approach, each dealing with a specific topic. In this article, we bring together many different papers which make a wide and comprehensive picture of the subject of AYAs coping with cancer, coupled with recommendations for the caring staff. In this review we focus on the various aspects of the disease and treatments in AYAs, based on the conceptual model of quality of life proposed by Ferrell and colleagues [Cancer Nurs 1992;15:153-160; Cancer Nurs 1992;15:247-253], including physical, social, emotional and spiritual aspects. From the psychological standpoint, most of the papers discuss the negative aspects; however, in this article we try to include some articles from the positive psychology school of thought. From our findings it is apparent that there is an opportunity and need to further explore research in this regard. It is apparent that taking a unique approach to AYA cancer patients is needed in order to deal with the unique needs of this age group. This article aims at putting a framework around this issue, with actionable recommendations for the caring staff.

Background: In pediatric cancer, the legal obligation to provide information is usually toward the parents who are the authorized signatories of the informed consent form. It is now known that aside from providing information to the parents, it is also very important to provide information to the children and adolescents themselves. The question is how the adolescents relate to this. What information do they already possess and what would they like to know? Would they wish to hear the truth in all situations and at what stage? What are their preferred sources of information?Method: A qualitative study that included in-depth interviews with 19 adolescents with cancer, aged 8.5–18, who were receiving active treatments and had been diagnosed at least 1 month previously. The interviews were guided by 15 open-ended questions.Findings: The analysis of the interviews indicated that adolescents know quite a lot about the course of their disease and the information they lack is mainly etiological. The participants reported a lack of knowledge concerning sexuality and a sense of discomfort talking about it, leaving them with open questions. They all claimed that it is important to tell the truth: “Even if the truth is difficult, it is important to tell it.” The participants reported that information can be scary, so it must be structured and adapted to the age and emotional readiness of the individual. Most of the participants prefer not to use the internet as an information resource due to the profusion of stressful and non-adapted information.Conclusion: Adolescents with cancer need trustworthy information and prefer to receive it from a human source rather than from the internet. Not telling the truth can lead them to feel fear and loneliness. The medical staff must operate in sensitive and creative ways to provide adolescents with access to information on various subjects, including sexuality, which they are ashamed to talk about, leaving them with a sense of shame and a lack of knowledge in this area.

No abstract