Communication of the cancer diagnosis to pediatric patients: impact on long-term adjustment

Slavin, Lesley A.; O’Malley, John E.; Koocher, Gerald P.; Foster, Diane J.

doi:10.1176/ajp.139.2.179

Cited by 142 publications

(12 citation statements)

References 16 publications

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“…Youth may learn of their HIV status on their own, by piecing together clues, or overhearing conversations, or even directly from providers, without caregiver knowledge. While we can draw upon the experiences from other chronic illnesses, as well as limited data available on nondisclosure and secrecy as it relates to HIV 17–19, we must remember that disclosure by others is only one way children learn of their HIV status, and that these different ways of learning may affect their psychosocial well-being.…”

Section: Discussionmentioning

confidence: 99%

“…The literature on disclosure of pediatric cancer diagnosis corroborates the evidence surrounding HIV disclosure, noting that despite parents’ wishes to protect their children from the negative effects of knowing their disease condition, children who are not informed of their status experience just as much emotional and psychological distress as children who are told their diagnoses. Few studies from developing countries to date have documented outcomes of disclosure17, 18. Some have found delayed or nondisclosure of HIV status to be associated with poor adherence, psychological and coping outcomes19, 20.…”

Section: Introductionmentioning

confidence: 99%

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Patterns of Disclosure of HIV Status to Infected Children in a Sub-Saharan African Setting

Vaz¹,

Maman²,

Eng³

et al. 2011

Journal of Developmental &Amp; Behavioral Pediatrics

101

133

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Objective Adult caregivers provide children living with HIV with varying amounts and types of information about their health status that may affect their coping and health care behaviors. We aimed to describe patterns of information-sharing with children and thoughts around disclosure among caregivers in the Democratic Republic of the Congo. Methods 259 primary caregivers of children 5–17 years old in an HIV pediatric care and treatment program were screened; 8 adult caregivers (3%) had informed their child of the child’s HIV status. We conducted structured interviews with 201 caregivers whose children had not yet been told their HIV status. Results Nearly 50% of caregivers provided no information to their child about their health; 15% had given partial information without mentioning HIV, and 33% provided information that deflected attention from HIV, whether deliberately so or otherwise. Almost all caregivers said that the child should be told their status some day, and three-fourths reported having ever thought about what might lead them to tell. However, nearly one-third of caregivers saw no benefits to informing the child of her/his HIV status. A majority of caregivers felt that they themselves were the best to eventually disclose to the child, but some wanted support from health care providers. Conclusion HIV-infected children are given limited information about their health. Health care providers may serve as important sources of support to caregivers as they decide when and how to talk candidly with their children about their health.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Patterns of Disclosure of HIV Status to Infected Children in a Sub-Saharan African Setting

Vaz¹,

Maman²,

Eng³

et al. 2011

Journal of Developmental &Amp; Behavioral Pediatrics

101

133

View full text Add to dashboard Cite

show abstract

“…37,44–47 In the ensuing decades, this growing body of evidence and clinical guidelines continued to support transparent communication with severely ill children. 48–51 The harms of disclosing distressing information were now being balanced against benefits of disclosure (e.g.…”

Section: Communication In Pediatrics – Transition To An “Open Approach”mentioning

confidence: 99%

Prognostic Disclosures to Children: A Historical Perspective

et al. 2016

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Prognostic disclosure to children has perpetually challenged clinicians and parents. In this article, we review the historical literature on prognostic disclosure to children in the United States using cancer as an illness model. Prior to 1948, there was virtually no literature focused on prognostic disclosure to children. As articles began to be published in the 1950s and 1960s, many clinicians and researchers initially recommended a “protective” approach to disclosure, where children were shielded from the harms of bad news. We identified four main arguments in the literature at this time supporting this “protective” approach. By the late 1960s, however, a growing number of clinicians and researchers were recommending a more “open” approach, where children were included in discussions of diagnosis, which at the time was often synonymous with a terminal prognosis. Four different arguments in the literature were used at this time supporting this “open” approach. Then by the late 1980s, the recommended approach to prognostic disclosure in pediatrics shifted largely from “never tell” to “always tell”. In recent years, however, there has been a growing appreciation for the complexity of prognostic disclosure in pediatrics. Current understanding of pediatric disclosure does not lead to simple “black and white” recommendations for disclosure practices. As with most difficult questions, we are left to balance competing factors on a case-by-case basis. We highlight four categories of current considerations related to prognostic disclosure in pediatrics, and we offer several approaches to prognostic disclosure for clinicians who care for these young patients and their families.

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“…However, even in cultures in which full disclosure is a common practice, parents often find it difficult to tell their child about the disease [20,21]. In western countries, the benefits of truthful disclosure have been examined [8,21,22,23], but there have been few such studies in Japan [24]. …”

Section: Introductionmentioning

confidence: 99%

Parental Post-Traumatic Stress Symptoms as Predictors of Psychosocial Problems in Children Treated for Cancer

Nakajima-Yamaguchi

Morita

Nakao

et al. 2016

IJERPH

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The purpose of this study was to explore the association between psychosocial functioning of children treated for cancer and that of their parents. Factors associated with psychosocial functioning were also examined. The present study was a cross-sectional survey of 33 mothers and one father (mean age: 37.9), each of whom had a child that had been treated for cancer. The participants answered a package of questionnaires consisting of the Impact of Event Scale-Revised (IES-R), the Parent Experience of Child Illness (PECI), and the Child Behavior Checklist (CBCL). Information about the children’s illnesses was collected from medical records. The CBCL total problems T score was correlated with the parental IES-R total scores. Intensity of treatment independently predicted the variance of parental long-term uncertainty. In conclusion, psychosocial problems of children with cancer were associated with parental post-traumatic stress symptoms (PTSS). Provision of early, adequate support to parents who are vulnerable to PTSS will help not only the parents, but also their children with cancer.

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Communication of the cancer diagnosis to pediatric patients: impact on long-term adjustment

Cited by 142 publications

References 16 publications

Patterns of Disclosure of HIV Status to Infected Children in a Sub-Saharan African Setting

Patterns of Disclosure of HIV Status to Infected Children in a Sub-Saharan African Setting

Prognostic Disclosures to Children: A Historical Perspective

Parental Post-Traumatic Stress Symptoms as Predictors of Psychosocial Problems in Children Treated for Cancer

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