Mercy Akambasisa

and 4 more

Background: Adolescents’ perceptions, attitudes, and lived experiences regarding cancer diagnosis significantly influence their quality of life and treatment adherence. To inform the formulation of tailored interventions, we explored these factors among adolescents receiving care at a sub-Saharan African health facility. Methods: We conducted a qualitative study from July 2022 to December 2022, at Mbarara Regional Referral Hospital in western Uganda. In-depth interviews were held with 30 adolescents aged 10–17 years who had been diagnosed with cancer. Using NVivo 12 software, a codebook and coding framework were developed to generate themes aligned with study objectives. Ethical approval was obtained from the Research and Ethics Committee of Mbarara University of Science and Technology. Results: Participants had a median age of 13.5 years; 19 were male. Diagnoses included leukemia (13), lymphoma (10) solid tumors (7). Initial. perceptions and attitudes towards their diagnosis were predominantly negative but improved over time as they received information and treatment. Perceptions and attitudes were poorer among those responding poorly to treatment and those who had had extremely negative experiences. Negative experiences included body disfigurement, social challenges, emotional distress, physical pain, and interrupted education. Positive experiences included improvement in symptoms and support from health workers and their families. Conclusion: Adolescents initially exhibit poor perceptions and attitudes towards their cancer diagnosis, which tend to improve with treatment and support. Their experiences are mixed, highlighting the need for specialized education and counselling services to address knowledge gaps, reduce negative attitudes, and improve overall care outcomes.

Barnabas Atwiine

and 10 more

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.