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


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.


  1. Sitaresmi MN, Mostert S, Gundy CM, Sutaryo, Veerman AJ (2008). Health-care providers’ compliance with childhood acute lymphoblastic leukemia protocol in Indonesia. Pediatr Blood Cancer, 51, 732-6.
  2. Yeh CH, Lin CF, Tsai JL, Lai YM, Ku HC (1999). Determinants of parental decisions on ‘drop out’ from cancer treatment for childhood cancer patients. J Adv Nurs, 30, 193-99.
  3. Poder U, von Essen L (2009). Perceptions of supports among Swedish parents of children on cancer treatment: a prospective, longitudinal study. Eur J Cancer Care, 18, 350-7.
  4. Poder U, Ljungman G, von Essen L (2010). Parents’ perception of their children’s cancer related symptoms during treatment: a prospective, longitudinal study. J Pain Symptom Manage, 40, 661-70.
  5. Rohani-Rasaf M, Moradi-Lakeh M, Ramezani R, Asadi-Lari M (2012). Measuring socioeconomic disparities in cancer incidence in Tehran, 2008. Asian Pac J Cancer Prev, 13, 2955-60.
  6. Sikorskii A, Wyatt G, Tamkus D, et al (2012). Concordance between patient reports of cancer related symptoms and medical record documentation. J Pain Symptom Manage, 44, 362-72.
  7. Sitaresmi MN, Mostert S, Purwanto I, et al (2009). Chemotherapyrelated side effects in childhood acute lymphoblastic leukemia in Indonesia: parental perceptions. J Pediatr Oncol Nurs, 26, 198-207.
  8. Sitaresmi MN, Mostert S, Schook RM, Sutaryo, Veerman AJ (2010). Treatment refusal and abandonment in childhood acute lymphoblastic leukemia in Indonesia: an analysis of causes and consequences. Psychooncology, 19, 361-7.
  9. Wang YR, Jin RM, Xu JW, Zhang ZQ (2011). A report about treatment refusal and abandonment in children with acute lymphoblastic leukemia in China, 1997-2007. Leuk Res, 35, 1628-31.
  10. William PD, Schmideskam J, Ridder EL, William AR (2006). Symptom monitoring and dependent care during cancer treatment in children: pilot study. Cancer Nurs, 29, 188-97.
  11. Mostert S, Arora RS, Arreola M, et al (2011). Abandonment of treatment for childhood cancer: position statement of a SIOP PODC Working Group. Lancet Oncol, 12, 719-20.
  12. Liau CT, Chu NM, Liu HE, (2005) Incidence of chemotherapy induced nausea and vomiting in Taiwan: physicians’ and nurses’ estimation vs. patients’ reported outcomes. Support Care Cancer, 13, 277-86.
  13. Moore JB, Kaffenberger C, Goldberg P, Oh KM, Hudspeth R (2009) School reentry for children with cancer: perceptions of nurses, school personnel, and parents. J Pediatr Oncol Nurs, 26, 86-99.
  14. Mostert S, Sitaresmi MN, Gundy CM, Sutaryo, Veerman AJ (2008). Attitude of health-care providers toward childhood leukemia patients with different socio-economic status. Pediatr Blood Cancer, 50, 1001-5.
  15. Mostert S, Gunawan S, Wolters EE, et al (2012). Socio-economic status plays important role in childhood cancer treatment outcome. Asian Pac J Cancer Prev, 13, 6491-6.
  16. Mostert S, Njuguna F, Kemps L, et al (2012). Epidemiology of diagnosed childhood cancer in Western Kenya. Arch Dis Child, 97, 508-12.
  17. Mulders M, Vingerhoets A, Breed W (2008). The impact of cancer and chemotherapy: perceptual similarities and differences between cancer patients, nurses and physicians. Eur J Oncol Nurs, 12, 97-102.
  18. Parsay S, Mosavi-Jarrahi A, Arabgol F, Kiomarcy A (2011). Intellectual and behavioral impairment after chemotherapy and radiotherapy among children with cancer in Iran. Asian Pac J Cancer Prev, 12, 1329-32.
  19. Patistea E, Babatsikou F (2003). Parents’ perception of the information provided to them about their child’s leukemia. Eur J Oncol Nurs, 7, 172-81.
  20. Howard SC, Pedrosa M, Lins M, et al (2004). Establishment of a pediatric oncology program and outcomes of childhood acute lymphoblastic leukemia in a resource-poor area. JAMA, 291, 2471-5.
  21. De Oliveira BM, Viana MB, De Mattos-Arruda L, Ybarra MI, Romanha AJ (2005). Evaluation of compliance through specific interviews: a prospective study of 73 children with acute lymphoblastic leukemia. J Pediatr, 81, 245-50.
  22. Hedstrom M, Haglund K, Skolin I, von Essen L (2003). Distressing events for children and adolescents with cancer: child, parent, and nurse perceptions. J Pediatr Oncol Nurs, 20, 120-32.
  23. Hinds PS (2008). Attending to patients’ cancer-related symptoms requires committed relationships. Cancer Nurs, 31, 87.
  24. Howard SC, Metzger ML, Wilimas JA, et al. (2008) Childhood Cancer Epidemiology in Low-Income Countries. Cancer, 112, 461-72.
  25. Indonesian Statistics Central Body (2010). Population census -Indonesia. available at:
  26. Israels T, Chirambo C, Caron H, (2008). The guardians’ perspective on pediatric cancer treatment in Malawi and factors affecting adherence. Pediatr Blood Cancer, 51, 639-42.
  27. Kim IR, Cho J, Choi EK, et al (2012). Perception, attitudes, preparedness and experience of chemotherapy-induced alopecia among breast cancer patients: a qualitative study. Asian Pac J Cancer Prev, 13, 1383-8.
  28. Kinahan KE, Gandhi M, Lacouture ME, et al (2009). Dermatologic issues in adult survivors of childhood cancer. J Cancer Surviv, 3, 158-63.
  29. Liang HF, Chiang LY, Yeh CH (2008). A comparison of emotional/behavioral problems between Taiwanese children with cancer and healthy controls. J Clin Nurs, 17, 304-11.
  30. Atay S, Conk Z, Bahar Z (2012). Identifying symptom clusters in paediatric cancer patients using the memorial symptom assessment scale. Eur J Cancer Care, 21, 460-8.
  31. Bonilla M, Rossel N, Salaverria C, et al (2009). Prevalence and predictor of abandonment therapy among children with cancer in El savador. Int J Cancer, 125, 2144-6.
  32. Carelle N, Piotto E, Bellanger A, et al (2002). Changing patient perceptions of the side effects of cancer chemotherapy. Cancer, 95, 155-63.
  33. Collins JJ, Byrnes ME, Dunkel IJ, et al (2000). The measurement of symptoms in children with cancer. J Pain Symptom Manage, 19, 363-77.
  34. Demirbağ BC, Kurtuncu M, Guven H (2013). Knowledge of Turkish mothers with children in the 0-13 age group about cancer symptoms. Asian Pac J Cancer Prev, 14, 1031-5.

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