Waiting and Not Knowing: The Diagnosis of Cancer in a Child

Clarke-Steffen, Laura

doi:10.1177/104345429301000405

Cited by 47 publications

(34 citation statements)

References 15 publications

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“…The experts agreed that these 3 foci must be dealt with sequentially to optimize learning (Figure 2); thus, importantly, the experts recommended that patient/family education in pediatric oncology be done on a continuum—across care transitions—and recognized that not all teaching must be accomplished immediately following diagnosis. Similar to other pediatric chronic illnesses, such as type I diabetes (Ahern, 2015) or premature birth (Bondurant, 2015), a diagnosis of childhood cancer often occurs abruptly, significantly disrupting family equilibrium (Clarke-Steffen, 1993). Childhood cancer treatment typically involves multiple planned readmissions to the hospital or sequenced outpatient encounters; thus, there are substantial opportunities for continuation of education beyond the period surrounding the initial diagnosis (O’Leary, Krailo, Anderson, & Reaman, 2008).…”

Section: Discussionmentioning

confidence: 99%

Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients: Consensus Recommendations from a Children’s Oncology Group Expert Panel

Landier

Ahern

Barakat

et al. 2016

J Pediatr Oncol Nurs

106

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There is a paucity of data to support evidence-based practices in the provision of patient/family education in the context of a new childhood cancer diagnosis. Since the majority of children with cancer are treated on pediatric oncology clinical trials, lack of effective patient/family education has the potential to negatively affect both patient and clinical trial outcomes. The Children’s Oncology Group Nursing Discipline convened an interprofessional expert panel from within and beyond pediatric oncology to review available and emerging evidence and develop expert consensus recommendations regarding harmonization of patient/family education practices for newly diagnosed pediatric oncology patients across institutions. Five broad principles, with associated recommendations, were identified by the panel, including recognition that (1) in pediatric oncology, patient/family education is family-centered; (2) a diagnosis of childhood cancer is overwhelming and the family needs time to process the diagnosis and develop a plan for managing ongoing life demands before they can successfully learn to care for the child; (3) patient/family education should be an interprofessional endeavor with 3 key areas of focus: (a) diagnosis/treatment, (b) psychosocial coping, and (c) care of the child; (4) patient/family education should occur across the continuum of care; and (5) a supportive environment is necessary to optimize learning. Dissemination and implementation of these recommendations will set the stage for future studies that aim to develop evidence to inform best practices, and ultimately to establish the standard of care for effective patient/family education in pediatric oncology.

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Section: Discussionmentioning

confidence: 99%

Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients: Consensus Recommendations from a Children’s Oncology Group Expert Panel

Landier

Ahern

Barakat

et al. 2016

J Pediatr Oncol Nurs

106

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“…Therefore, while negative consequences of living with uncertainty have been reported, parents perceive benefits as well. Even a minimal degree of prognostic uncertainty contributes to the emotional burden a parent must endure, perpetuating a feeling of being out of control [Mishel, 1983;Cohen, 1993;Clarke-Steffen, 1993b]. Perceived personal control is an important construct because it broadly addresses behaviors that may be amenable to intervention [Folkman, 1984;Litt, 1988].…”

Section: Introductionmentioning

confidence: 99%

Uncertainty and perceived personal control among parents of children with rare chromosome conditions: The role of genetic counseling

Lipinski

Biesecker

et al. 2006

American J of Med Genetics Pt C

100

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Little is known about the impact of genetic counseling on parental uncertainty or perceived control regarding the prognosis of a child with a chromosomal disorder. By exploring the parents' concerns and needs surrounding the child's diagnosis, a genetic provider can help to facilitate effective coping. This study tested the association of measures of parental uncertainty and perceived control with the perceived helpfulness of the genetic counselor. A survey was distributed to 875 members of the Chromosome Deletion Outreach (CDO) support group. We hypothesized that parents' perceptions about the helpfulness of the genetic counselor would modify the relationship between perceived uncertainty, perceived control, and coping. Among the 363 respondents, there was a significant negative correlation of the perceived helpfulness of seeing a genetic counselor with the levels of uncertainty (rs = −0.20, P‐value < 0.001). Lower perceived helpfulness of the genetic counselor, along with less perceived personal control, less benefit of a diagnosis, and lower parental age were significant predictors of the highest perceptions of uncertainty. The Transactional Model of Stress and Coping was used as a framework for interpreting the relationships between parental uncertainty, perceived control, and outcome variables. There was a significant positive correlation between parents' perceived personal control and their reports of helpfulness of the genetic counselor (rs = 0.20, P‐value <0.0006). Genetic counseling can be enhanced for parents faced with rare disorders by using interventions focused on reducing feelings of uncertainty and enhancing feelings of control. © 2006 Wiley‐Liss, Inc.

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“…U ncertainty is the single greatest source of psychosocial stress for people affected by serious illness (Koocher, 1985). Uncertainty pervades parents' experience of a child's serious illness from the time of diagnosis (Clarke-Steffen, 1993a;Cohen, 1993aCohen, , 1995aSantacrcoce, 2000), through treatment (Clarke-Steffen, 1993bCohen, 1993b), with disease progression (Hinds et al, 1996), and during survivorship (Sparacino et al, 1997) or bereavement (Cohen & Martinson, 1988). Mishel (1990) theorized that people who live with chronic uncertainty in adult illness can develop symptoms similar to those seen in people with a pathologic response to traumatic stressors: posttraumatic stress disorder (PTSD).…”

mentioning

confidence: 99%