A qualitative study on the experiences of family caregivers of children with End Stage Kidney Disease (ESKD)

Abstract

Abstract Background Family caregivers, mostly parents, are greatly involved in the care of their children with end stage kidney disease (ESKD) globally. Yet, the experiences of these caregivers and the demands placed on them by the caregiving role have not been explored or documented in Ghana. This study explored how caregiving affects the psychological, physical, social, and spiritual well-being of family caregivers of children with end stage kidney disease (ESKD) in Ghana. Methods A phenomenological approach with the purposive sampling technique was used to gather data from 12 family caregivers of children with ESKD at a pediatric renal unit in Ghana. A semi-structured interview guide was constructed based on the constructs of the City of Hope Quality of Life (QoL) Family Caregiver Model and the research objectives. Colaizzi’s thematic analysis approach was utilized to analyze data for this study. Themes were organized under the domains of the chosen model, and a new theme outside these domains was also generated. Results The majority of the family caregivers experienced anxiety, fear, uncertainty, and hopelessness in response to the children’s diagnosis and care. The thought of the possibility of the children dying was deeply traumatizing for our participants. Most participants reported bodily pains and physical ailments because of lifting and caring for the children. Financial constraint was also a key issue for all the family caregivers. Most of them received diverse support from their families and loved ones. Due to the demanding nature of the care, most family caregivers had to change or quit their jobs. They coped with the challenges through prayers, participating in religious activities, and being hopeful in God for healing. Conclusion All the family caregivers had their psychological well-being compromised as a result of the challenges they encountered physically, socially, and spiritually. Continuous psychosocial support, funding support, and review of policies on leave for civil workers with children diagnosed with ESKD are urgently required.