Adolescents With Cancer Need Trustworthy Information and Prefer to Receive It From a Human Source Rather Than From the Internet: A Qualitative Study.

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.

Psychosocial Outcomes of Sharing a Diagnosis of Cancer with a Pediatric Patient.

PURPOSE: This innovative pilot study was designed to provide research-based evidence on the variables to consider informing a child of his/her cancer diagnosis, so as to minimize the negative psychosocial effects of the cancer experience on survivors. The hypotheses of the study were that "good information" about cancer, will allow the child a better understanding way to cope with treatment and improve sociopsychological outcomes at adulthood. METHODS: Ninety-one adult childhood cancer (CC) survivors got the questionnaires while waiting to their routine checkup at a grate CC medical center in center Israel. RESULTS: To our surprise and not according to the hypothesis, there was a difference between children diagnosed up to 12 years of age and those diagnosed during adolescence. (Participants were divided into two groups according to their age at diagnosis: from birth to 12 years old and from age 12-18). In the group diagnosed at a younger age, those who had received "good information" were found to have better quality of life, lower mental pain, and higher mental pain tolerance than did those in the same group (diagnosed at a younger age) who received "not good information." By contrast, in the group diagnosed during adolescence, those who had received "not good information" scored higher on these measures than did their counterparts who had received "good information." CONCLUSION: Given that information conveyed to children diagnosed with cancer can have a significant impact on survivors' quality of life, further research is needed to determine the precise information to be divulged to children at the time of diagnosis. In the meantime, extreme caution, sensitivity, and careful judgment are required. CLINICAL RELEVANCE: Findings of the current study and of future studies can be used to formulate clear guidelines for assessing a child's readiness and the information to be divulged, so as to improve the quality of life of CC survivors.

Post-traumatic stress disorder in Israeli survivors of childhood cancer.

PURPOSE/OBJECTIVES: To investigate the prevalence, symptom severity, and risk factors associated with post-traumatic stress disorder (PTSD) in childhood cancer survivors. DESIGN: Descriptive, correlational study. SETTING: Follow-up clinic in Petach Tikva, Israel. SAMPLE: Convenience sample of 70 adult Israeli survivors of childhood cancer. METHODS: Questionnaires (the Post-Traumatic Diagnostic Scale and the Multidimensional Scale of Perceived Social Support) were distributed to participants, and demographic and clinical data were obtained from medical records. MAIN RESEARCH VARIABLES: Post-traumatic stress, social support, and clinical and demographic data. FINDINGS: Twenty (29%) of the participants met the Diagnostic and Statistical Manual of Mental Disorders (4th ed.) criteria for PTSD; 10% experienced mild, 40% moderate, and 50% moderate to severe symptoms. Only 16% of the sample did not experience any symptoms of PTSD. A statistically significant negative relationship was found between PTSD symptom scores and the current age of the respondent (r(s) = -0.27, p = 0.03) and time since medical treatment (r(s) = -0.34, p = 0.004) but not any other demographic or clinical variables or social support. CONCLUSIONS: Higher severity of PTSD symptoms was found, possibly because of local living conditions. Most clinical and demographic variables were not risk factors. This population should be studied further in an effort to prevent PTSD via early diagnosis. IMPLICATIONS FOR NURSING: Oncology nurses should be aware of the potential risk factors (recent completion of treatment and younger current age) and the high prevalence and severity of PTSD among survivors of childhood cancer to identify patients at higher risk and develop programs that prevent, limit, and treat PTSD.