Abstract
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.
Highlights
In the patient-centered approach, communication skills constitute significant milestones (Zanon et al, 2020)
The current study adds knowledge received from adolescents with cancer regarding providing information about their illness
Some said that information would lead to good and positive feelings such as confidence and trust in the medical staff and themselves, while for others, the same information would result in fear
Summary
In the patient-centered approach, communication skills constitute significant milestones (Zanon et al, 2020) This approach advocates sharing with the patient all details of the diagnosis, the treatments, and their consequences (Ali, 2017). When diagnosing pediatric cancer, the responsibility to provide information regarding the diagnosis and treatments falls on the guardian. Aside from providing information to the parents, it is very important to provide information regarding the diagnosis and planned treatment to the children and adolescents themselves (Bahrami et al, 2017; Stein et al, 2019). The legal obligation to provide information is usually toward the parents who are the authorized signatories of the informed consent form. 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?
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