title: The guardians' perspective on paediatric cancer treatment in Malawi and factors affecting adherence.
abstract: BACKGROUND
  Abandonment of paediatric cancer treatment is a common problem in developing countries. Little is known about the guardians' perspective on cancer treatment in these countries, especially the factors that affect adherence.
  
  
  METHODS
  Following a pilot study enquiring into the possible causes of abandonment, a problem analysis diagram was drawn which helped to develop the questionnaires. Semi-structured interviews (n = 83) and focus group discussions (n = 8) were held with the guardians of 25 Burkitt lymphoma patients and 7 Wilms tumour patients at different phases of therapy in Malawi.
  
  
  RESULTS
  Parents in Malawi are very motivated to continue treatment if they think that it will cure their child. Financial costs are important concerns. Not all tasks at home are assumed by other household members. The diagnosis of cancer was unknown before being told about it in hospital and caused fear of recurrence and death. Guardians are reluctant to ask the health personnel questions. They worry that taking frequent blood samples will weaken their child. The side effects of the chemotherapy are seen as a proof of efficacy.
  
  
  CONCLUSIONS
  It is important to appreciate the guardians' concerns when offering treatment that requires their sustained commitment. It is necessary to provide not only medical treatment, but also travel allowances and adequate nutritional support during long hospital stays to impoverished families. Information should be given proactively.
authors.affiliation: Department of Paediatrics, College of Medicine, University of Malawi, Blantyre, Malawi. trijnisraels@hotmail.com
authors.forename: Trijn
authors.initials: T
authors.lastname: Israëls
authors.forename: Chawanangwa
authors.initials: C
authors.lastname: Chirambo
authors.forename: Huib
authors.initials: H
authors.lastname: Caron
authors.forename: Jan
authors.initials: J
authors.lastname: de Kraker
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Molyneux
authors.forename: Ria
authors.initials: R
authors.lastname: Reis
mesh_terms: D000971:Antineoplastic Combined Chemotherapy Protocols / Q000008:administration & dosage / Q000191:economics; D002648:Child; D003657:Decision Making; D003906:Developing Countries; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007872:Legal Guardians / Q000523:psychology*; D008295:Malawi; D009369:Neoplasms / Q000628:therapy*; D010349:Patient Compliance / Q000706:statistics & numerical data*; D010865:Pilot Projects