Qualitative exploration of family caregivers' perception and experience caring for pediatric patients with cancer

Abstract Background: Literature on the experience of those caring for children with cancer from low- and middle-income countries is scant. Gaining insight into their experiences may be important to providing appropriate services for this group. This study sought to identify the concerns and explore the experiences of family caregivers of pediatric patients with cancer in Nigeria. Method: This qualitative study used semistructured interviews to collect data from 16 consenting family caregivers of pediatric patients with cancer seen at the University College Hospital, Ibadan. Recorded audio data were transcribed and subjected to content analysis. Results: Most family caregivers were unaware of pediatric cancer before getting the diagnosis. They experienced anticipatory grief fearing the possibility of their children dying and feeling helpless regarding funding the treatments. In addition, they expressed powerlessness in controlling the illness/treatment outcome and in managing how they were treated by hospital staff. Siblings were said to experience distress from seeing the deteriorating physical changes in their siblings with cancer. Participants reported disruption in usual domestic and socioeconomic activities in the family. They mostly coped through using religious/spiritual coping strategies and accessing some social support from hospital staff and well-wishers. Family caregivers perceived a need for greater government involvement in pediatric cancer care and prevention efforts and seek more cooperation from hospital staff in the care of their children. Conclusions: Family caregivers of pediatric patients with cancer experience challenges worthy of psycho-oncologists’ attention. This population might benefit from interventions to manage anticipatory grief and promote assertive communication and problem-solving skills.