Bryan A Sisk1, Tammy I Kang2,3, Jennifer W Mack4,5. 1. Division of Hematology and Oncology, Department of Pediatrics, Washington University School of Medicine, St. Louis, Missouri. 2. Section of Pediatric Palliative Care, Texas Children's Hospital, Houston, Texas. 3. Department of Pediatrics, Baylor College of Medicine, Houston, Texas. 4. Pediatric Oncology and Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts. 5. Division of Pediatric Hematology/Oncology, Boston Children's Hospital, Boston, Massachusetts.
Abstract
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.
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.