Parental perceptions and experiences on disclosure of cancer diagnosis in Rwanda: A qualitative study

Abstract

Background: The manner in which healthcare providers disclose a childhood cancer diagnosis to parents affects the way the diagnosis is perceived, digested, and used by clinicians and parents. Objectives: The aim of this study was to explore Rwandan parents’ experiences and preferences upon disclosure of childhood cancer diagnosis and examines their suggestions to improve cancer diagnosis disclosure to parents. Methods: A qualitative approach using a thematic analysis was adopted. Semi-structured interviews were conducted with twelve caregivers from two paediatric oncology units of two different hospitals in Rwanda. Results: Twelve caregivers including seven fathers, four mothers and one older sister participated in the study. These were the caregivers of Rwandan children diagnosed with cancer at between three and fourteen years-of-age. Seven themes were identified following thematic analysis: experience and feelings, emotional work, person, location, manner, information and family member preferences. Overall, caregivers were satisfied with difficult experiences that provoked different emotions and provided suggestions about their preferences. Conclusion and recommendation: Effective and honest communication of the physician with parents is important and requires a well prepared staff and location and must be done with empathy towards the parents while allowing the closest available relative to be invited whenever possible.