Lived Experiences of Prostate Cancer Patients Below 55 Years of Age: A Phenomenological Study of Outpatients Receiving Treatment at the Uganda Cancer Institute

Abstract

Cancer of the prostate is globally the second commonest cancer among men. Its incidence in Uganda is rising and is currently reported at 5.2%. It is responsible for about 25% of cancer deaths among male Ugandans. The diagnosis and treatment of prostate cancer is associated with massive psychosocial effects on top of the biomedical implications both for the patient and the healthcare system. Understanding these implications from the patients’ perspective may help inform service planning and resource allocation. This study aimed to explore the lived experiences of men below 55 years of age with prostate cancer at Uganda Cancer Institute. The study design was qualitative with a phenomenological approach based on social constructivism theory. Open ended questions were used to conduct in-depth interviews with purposively selected prostate cancer patients at Uganda Cancer Institute (UCI) until theoretical saturation was reached. Their care givers were also interviewed to aid triangulation. Thematic-content analysis of data was performed using Tesch’s eight steps. Twelve patients and eight care givers were interviewed. The recurrent themes were lack of information and unavailability of health workers, altered lives and/or state of doubt, sense of loneliness and lack of support groups. Two marriages were broken as a direct consequence of the experience with prostate cancer. Inconsistent information or complete lack of it and unacceptably long waiting times led to disillusionment and frustration with the health care system. None of the participants received any counseling. The unmet needs from these experiences included psychosocial support, clarity of information and psychosexual support for treatment related side effects. Strengthening a holistic multidisciplinary approach and creation of support groups may help improve the experience with prostate cancer in Uganda.