Abstract
Background: Caring for children at end of life (EOL) can be devastating for primary caregivers who are responsible for the physical, social, and emotional needs of their dying child. Limited information was found on resources in Saudi Arabia to manage the impact on primary caregivers from caring for a child receiving end of life care (EOLC).
Purpose: The purpose of this study was to explore the experiences of primary caregivers caring for a child receiving EOLC within the Saudi Arabian health care system.
Methods: A descriptive phenomenological study was conducted, and 24 female primary caregivers were interviewed individually. Participants were recruited from three hospitals and the surrounding community in Jeddah, Saudi Arabia. The data were collected over a period of seven weeks between August and September of 2019. Individual in-depth interviews were conducted using an 11-item investigator-developed interview guide derived from the literature on EOL. Thematic analysis was completed using transcripts from all interviews.
Results: The findings suggest that primary caregivers caring for a child receiving EOLC were impacted psychologically, physically, socially, and financially. Primary caregivers expressed their heartbreak, lack of sleep, isolation, and financial challenges while caring for their child at EOL.
Conclusions: Similar to what has been reported in the literature, primary caregivers caring for a child at EOL experience biopsychosocial and financial challenges. In addition, this study has implications for nursing education, practice, policy, and research regarding EOLC. Also, the findings can guide future research on EOL in Saudi Arabia and worldwide.