Primary Caregivers Caring for a Child at End of Life in Saudi Arabia

Abstract

Background/ Significance: Caring for children at end of life (EOL) can be devastating for primary caregivers who are providing 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: Explore the experiences of primary caregivers caring for a child at EOL in Saudi Arabia. Conceptual framework: The conceptual framework for this investigation was comprised of concepts related to EOLC including holistic health, support system and religion. Method: A phenomenological investigation was conducted in Saudi Arabia. The participant inclusion criteria: female primary care givers, 18 years of age and older, with children under 15 years, who are receiving EOLC. An interview guide was used for conducting in-depth individual interviews. The data was analyzed using thematic analysis, and the analysis was conducted within and across all interviews. Results: Participants were female primary caregivers (N = 24), who met the inclusion criteria. The findings suggest that primary caregivers caring for a child at EOL experienced biopsychosocial and financial alterations. Additionally, religion/Islam, support system, and culture were factors that impacted the participants’ experiences. Conclusions: This study has implications for nursing education, practice, policy, and research regarding EOLC. Furthermore, it will guide future research on EOLC in Saudi Arabia and countries worldwide.