How Parents of Children With Cancer Learn About Their Children's Prognosis
Prognosis; Child; Hospitals Pediatric; Only Child
OBJECTIVES: To determine which prognostic information sources parents find informative and which are associated with better parental understanding of prognosis. METHODS: Prospective, questionnaire-based cohort study of parents and physicians of children with cancer at 2 academic pediatric hospitals. We asked parents how they learned about prognoses and evaluated relationships between information sources and prognostic understanding, defined as accuracy versus optimism. We excluded parents with pessimistic estimates and whose children had such good prognoses that optimism relative to the physician was impossible. Analytic cohort of 256 parent-physician pairs. RESULTS: Most parents considered explicit sources (conversations with oncologists at diagnosis, day-to-day conversations with oncologists, and conversations with nurses) "very" or "extremely" informative (73%-85%). Implicit sources (parent's sense of how child was doing or how oncologist seemed to feel child was doing) were similarly informative (84%-87%). Twenty-seven percent (70/253) of parents reported prognostic estimates matching physicians' estimates. Parents who valued implicit information had lower prognostic accuracy (odds ratio [OR] 0.50; 95% confidence interval 0.29-0.88), especially those who relied on a "general sense of how my child's oncologist seems to feel my child is doing" (OR 0.47; 0.22-0.99). Parents were more likely to use implicit sources if they reported receiving high-quality prognostic information (OR 3.02; 1.41-6.43), trusted the physician (OR 2.01; 1.01-3.98), and reported high-quality physician communication (OR 1.81; 1.00-3.27). CONCLUSIONS: Reliance on implicit sources was associated with overly-optimistic prognostic estimates. Parents who endorsed strong, trusting relationships with physicians were not protected against misinformation.
Sisk BA; Kang TI; Mack JW
Pediatrics
2017
<a href="http://doi.org/%2010.1542/peds.2017-2241" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-2241</a>
Sources of parental hope in pediatric oncology
palliative care; pediatric oncology; hope; communication; meaning
BACKGROUND: Hope is a multidimensional concept that is important for all parents of children with cancer. However, most work has focused on advanced cancer and poor prognoses. We examined hopes of all parents of children with cancer longitudinally during the first year of treatment. PROCEDURE: Prospective, longitudinal, questionnaire-based cohort study of parents and physicians of children with cancer at two academic pediatric hospitals. Parents reported on general sense of hopefulness and specific hopes at time of diagnosis (N = 374); a subset of parents (N = 164) were followed longitudinally at 4 and 12 months. RESULTS: Fifty-five percent of parents (N = 206/374) reported being extremely hopeful in general at baseline. Hopefulness did not significantly change over time, and most parents (51-58%) reported being extremely hopeful regardless of prognosis (P = 0.66). Most parents (N = 327/356) considered hope for cure to be an extremely important source of hope; most also reported hope that the child would feel loved (N = 328/356), that the child would have the best possible quality of life (N = 316/356), and that they would always do all they could for the child (N = 300/356). Hope for cure was slightly lower among parents of children with less than a 50% chance of cure at baseline (N = 53/63) when compared to those with better prognoses (moderately likely cure, N = 76/78; very likely cure, N = 198/215) (P = 0.02). CONCLUSIONS: Many hopes contribute to parental hopefulness, not just hope for cure. This hopefulness persists over time, even when the prognosis is poor. Clinicians should focus on supporting the myriad hopes that contribute to overall hopefulness.
Sisk BA; Kang TI; Mack JW
Pediatr Blood Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.26981" target="_blank" rel="noreferrer noopener">10.1002/pbc.26981</a>