Self-Reported Quality of Life and Lived Experiences of Adolescent Cancer Survivors Aged 10–19 in Southwestern Uganda: A Mixed-Methods Study in a Resource-Limited Setting

Abstract

Background: Cancer and its management affect the quality of life (QOL) and lived experiences of adolescent survivors. Aims: We describe the QOL and document the lived experiences of adolescent cancer survivors at a tertiary hospital in south western Uganda. Methods and Results: We conducted a mixed-methods, cross-sectional study using descriptive quantitative interviews using the summarized World Health Organization QOL questionnaire and qualitative in-depth interviews with adolescent cancer survivors at Mbarara Regional Referral Hospital in southwestern Uganda in July and August 2023. We explored participants' perceptions of their health as a percentage of the overall QOL scores and evaluated their lived experiences using an inductive approach. The study obtained ethical approval from the Research and Ethics Committee of the Mbarara University of Science and Technology. A total of 42 adolescents with a mean age of 13.2 (SD±2.9) years participated in the study. Twenty-three (55%) were males, and 24 (57%) had survived hematological malignancies. Participants reported very good (n=12, 28.6%), good (n=29, 69.1%), and poor (n=1, 23%) QOL. Eleven (26.2%) and 30 (71.4%) participants reported they were very satisfied and satisfied with their health, respectively. Participants reported both positive and negative lived experiences. The positive experiences included persistent gratefulness, hope for a cure, and relationship restructuring. The negative experiences included concerns about body appearance, family separation, financial difficulties, and academic challenges. Conclusion: The QOL of adolescent cancer survivors in our setting is generally good and is influenced by support from family and the healthcare system. Their lived experiences are varied. Psychosocial services and peer support could improve perceived negative experiences.