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Parents' and Health-Care Providers' Perspectives on Side-Effects of Childhood Cancer Treatment in Indonesia

  • Gunawan, Stefanus (Department of Pediatric Oncology-Hematology, Prof Dr RD Kandou Hospital) ;
  • Wolters, Emma (Department of Pediatric Oncology-Hematology, VU University Medical Center) ;
  • Dongen, Josephine Van (Department of Pediatric Oncology-Hematology, VU University Medical Center) ;
  • De Ven, Peter Van (Department of Epidemiology and Biostatistics, VU University Medical Center) ;
  • Sitaresmi, Mei (Department of Pediatrics, Dr Sardjito Hospital, Gadjah Mada University) ;
  • Veerman, Anjo (Department of Pediatric Oncology-Hematology, VU University Medical Center) ;
  • Mantik, Max (Department of Pediatric Oncology-Hematology, Prof Dr RD Kandou Hospital) ;
  • Kaspers, Gertjan (Department of Pediatric Oncology-Hematology, VU University Medical Center) ;
  • Mostert, Saskia (Department of Pediatric Oncology-Hematology, VU University Medical Center)
  • Published : 2014.04.30

Abstract

Background: Efficacy of childhood cancer treatment in low-income countries may be impacted by parents' and health-care providers' perspectives on chemotherapy-related side-effects. This study explores prevalence and severity of side-effects in childhood cancer, and compares health beliefs about side-effects between parents and health-care providers, and between nurses and doctors in Indonesia. Materials and Methods: Semi-structured questionnaires were filled in by 40 parents and 207 health-care providers in an academic hospital. Results: Parents exporessed a desire to receive more information about side-effects (98%) and worried about this aspect of treatment (90%), although side-effects were less severe than expected (66%). The most frequent was behavior alteration (98%) and the most severe was hair loss. Only 26% of parents consulted doctors about side-effects. More parents, compared to health-care providers, believed that medicines work better when side-effects are more severe (p<0.001), and accepted severe side-effects (p=0.021). More health-care providers, compared to parents, believed that chemotherapy can be stopped or the dosage altered when there are side-effects (p=0.011). More nurses, compared to doctors, stated that side-effects were unbearable (p=0.004) and made them doubt efficacy of treatment (p<0.001). Conclusions: Behavior alteration is the most frequent and hair loss the most severe side-effect. Apparent discrepancies in health beliefs about side-effects exist between parents and health-care providers. A sustainable parental education program about side-effects is recommended. Health-care providers need to update and improve their knowledge and communication skills in order to give appropriate information. Suchmeasures may improve outcome of childhood cancer treatment in low-income countries, where adherence to therapy is a major issue.

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