Adolescents’ perceptions and lived experiences of cancer patient-hood: a qualitative study

Abstract

Background: Adolescents’ perceptions and lived experiences regarding their 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 in Western Uganda. 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. NVivo 12 software was used to develop a codebook and coding framework to generate themes inductively emerging from the data that aligned with the 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. The diagnoses included leukemia (n = 13), lymphoma (n = 10), and solid tumors (n = 7). Initial perceptions regarding their diagnosis were predominantly negative but improved over time as they received information and improved on treatment. Perceptions were poorer among those who responded 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 towards their cancer diagnosis, which tend to improve with clinical improvement on treatment and support. Their experiences and perceptions are mixed, highlighting the need for specialized/ tailored education and counselling services to address knowledge gaps obtained from the research findings, and hence improve overall care outcomes among the study population.