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“Money was the Problem”: Financial Difficulty is the Main Reason for Treatment Abandonment by Children with Cancer in South West Uganda
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  • Barnabas Atwiine,
  • Imelda Busingye,
  • Rose Kyarisiima,
  • Emmanuel Baluku,
  • Ruth Mbabazi,
  • Brian Bamwine,
  • Siyadora Ankunda,
  • Jaime Libes,
  • Howard Weinstein,
  • Kevin Schwartz,
  • Gertrude Kiwanuka
Barnabas Atwiine
Mbarara University of Science and Technology
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Imelda Busingye
Mbarara National Referral Hospital
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Rose Kyarisiima
Mbarara National Referral Hospital
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Emmanuel Baluku
Mbarara National Referral Hospital
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Ruth Mbabazi
Mbarara National Referral Hospital
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Brian Bamwine
Mbarara National Referral Hospital
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Siyadora Ankunda
Mbarara National Referral Hospital
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Jaime Libes
University of Illinois College of Medicine
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Howard Weinstein
Massachusetts General Hospital
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Kevin Schwartz
Massachusetts General Hospital
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Gertrude Kiwanuka
Mbarara University of Science and Technology
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Abstract

Introduction - Treatment abandonment contributes significantly to poor survival of children with cancer in low-middle-income countries (LMICs). In order to inform an approach to this problem at our Cancer Unit, we investigated why caregivers withdraw their children from treatment. Methods – In a qualitative study, in-depth interviews were conducted with caregivers of children who had abandoned cancer treatment at the Paediatric Cancer Unit (PCU) of Mbarara Regional Referral Hospital (MRRH) in South Western Uganda, between May 2017 and September 2020. Recorded in-depth interviews with caregivers were transcribed and analyzed to identify themes of caregiver self-reported reasons for treatment abandonment. Results - Seventy-seven out of 343 (22.4%) children treated for cancer at MRRH abandoned treatment during the study period; 20 contactable and consenting caregivers participated in the study. The median age of children’s caregivers was 37 years and most (65%) were mothers. At the time of this study, eight (40%) children were alive and 5 (62.5%) were males; with a median age of 6.5 years. Financial difficulties, other obligations, the child falsely appearing cured, preference for alternative treatments, belief that cancer was incurable, fear that the child’s death was imminent and chemotherapy side-effects were the caregivers’ reasons for treatment abandonment. Conclusions and Recommendation – Treatment abandonment among children with cancer in Uganda is, most times, as a result of difficult conditions beyond the caregivers’ control and needs to be approached with empathy and support.

Peer review status:ACCEPTED

13 Apr 2021Submission Checks Completed
13 Apr 2021Assigned to Editor
13 Apr 2021Submitted to Pediatric Blood & Cancer
16 Apr 2021Reviewer(s) Assigned
07 May 2021Review(s) Completed, Editorial Evaluation Pending
10 May 2021Editorial Decision: Revise Minor
26 May 2021Submission Checks Completed
26 May 20211st Revision Received
26 May 2021Assigned to Editor
27 May 2021Reviewer(s) Assigned
16 Jun 2021Review(s) Completed, Editorial Evaluation Pending
17 Jun 2021Editorial Decision: Revise Minor
01 Jul 2021Submission Checks Completed
01 Jul 2021Assigned to Editor
01 Jul 20212nd Revision Received
02 Jul 2021Reviewer(s) Assigned
19 Jul 2021Review(s) Completed, Editorial Evaluation Pending
19 Jul 2021Editorial Decision: Revise Minor
28 Jul 2021Assigned to Editor
28 Jul 2021Submission Checks Completed
28 Jul 20213rd Revision Received
02 Aug 2021Review(s) Completed, Editorial Evaluation Pending
02 Aug 2021Editorial Decision: Accept