Experiences of pediatric cancer caregivers.A case study in Ugandan Cancer Institute

Abstract

This study explored the experiences of pediatric cancer caregivers in taking care of children diagnosed with cancer at Uganda Cancer Institute (UCI). The study aimed to explore the emotional experiences of pediatric cancer caregivers, to examine the social and financial challenges encountered by pediatric cancer caregivers as well as the coping mechanisms utilized to navigate these challenges. The study adopted a phenomenological research study design since the study was qualitative in nature. Data were collected mainly with primary pediatric cancer caregivers and key informants that included pediatric oncologists, a medical social worker and a counselor through in-depth interviews. Thematic analysis was adopted during data analysis. The findings revealed that indeed primary pediatric cancer caregivers experienced emotional distress and this was depicted through emotional disorientation, depression, insomnia and exhaustion. The study further revealed social challenge including stigma, discrimination and family separation were the most profound social challenges. Inadequate medical supplies, out of pocket expenses were the major financial challenges. Individual coping mechanisms such as Strong Support Systems, Spiritual Coping, Support from philanthropists were utilized by pediatric cancer caregivers. The study highlights the need for strong support mechanism, effective planning through stakeholder involvement to address the challenges encountered by pediatric cancer caregivers intaking care of children diagnosed with cancer.