title: Parental experiences of childhood leukemia treatment in indonesia.
abstract: In our study, we examined socioeconomic, treatment-related, and psychologic experiences of parents during the acute lymphoblastic leukemia treatment of their children in an academic hospital in Indonesia. Children were treated with the WK-ALL-2000 protocol and received donated chemotherapy. From November 2004 to April 2006, 51 parents were interviewed by psychologists using semi-structured questionnaires. The family income had decreased (69%) since the start of treatment. Parents lost their jobs (29% of fathers and 8% of mothers), most of whom stated that this loss of employment was caused by the leukemia of their child (87% of fathers and 100% of mothers). Treatment costs resulted in financial difficulties (78%), debts (65%), and forced parents either to postpone or withdraw from parts of treatment (18%). Parents mentioned needing more information (86%) from and contact (77%) with doctors. The parent organization did not pay any visits (69%) during hospitalization, nor did they give information (59%) or emotional support (55%). We have concluded that the socioeconomic impact of leukemia treatment was profound. Communication between parents and doctors requires improving. The role of the parent organization was insignificant and must be ameliorated.
authors.affiliation: Pediatric Hematology Oncology Division, Department of Pediatrics, Vrije University Medical Center, Vrije University, Amsterdam, The Netherlands. s.mostert@vumc.nl
authors.forename: Saskia
authors.initials: S
authors.lastname: Mostert
authors.forename: Mei N
authors.initials: MN
authors.lastname: Sitaresmi
authors.forename: Chad M
authors.initials: CM
authors.lastname: Gundy
authors.lastname: Sutaryo
authors.forename: Anjo J P
authors.initials: AJ
authors.lastname: Veerman
mesh_terms: D000293:Adolescent; D000328:Adult; D000971:Antineoplastic Combined Chemotherapy Protocols; D002648:Child; D002673:Child, Hospitalized; D002675:Child, Preschool; D003625:Data Collection; D004651:Employment; D005260:Female; D017048:Health Care Costs; D006801:Humans; D007182:Income; D007214:Indonesia; D007938:Leukemia / Q000523:psychology* / Q000628:therapy; D008297:Male; D010290:Parents / Q000523:psychology*; D011203:Poverty; D011368:Professional-Family Relations; D012657:Self-Help Groups; D012959:Socioeconomic Factors