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

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.

Pediatric End of Life Care: Impact of Islamic Faith.

Studies investigating children and families' experiences at end of life in Saudi Arabia are limited. However, one factor found to have an impact on patient and primary caregiver end of life care is Islam. Since women are the primary caregivers for children in Saudi Arabia, the purpose of this study was to explore the perceptions of Muslim women caring for a child at end of life. Using a qualitative approach, interviews were conducted with 24 female primary caregivers caring for a child at end of life. Thematic analysis was used to analyze the data. The researchers found that Islamic beliefs and practices had a positive influence on primary caregivers' experiences. Islamic beliefs and practices helped support participants through their child's end of life experience. Results have implications for health care education, practice, policy, and future research on end of life in Saudi Arabia other Muslim countries.