Pediatric End-of-Life Care in Rural America: A Systematic Review

Abstract

BACKGROUND: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. OBJECTIVE: The purpose of this study was to comprehensively review and summarize the evidence regarding end-of-life care for children living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. METHODS: A systematic review was conducted from 2011 to 2021 using MEDLINE and CINAHL databases. RESULTS: Nine studies met inclusion criteria. Key themes from the literature included: barriers, facilitators, and needs. Three articles identified barriers to end-of-life care for children in rural communities, which included access to end-of-life care and clinicians trained to provide pediatric care. Three studies identified and evaluated the facilitators of end-of-life care for rural children. The articles identified technology and additional training as facilitators. Four studies reported on the needs of rural children for end-of-life care with serious illness. CONCLUSIONS: We found major barriers and unmet needs in the delivery of rural pediatric end-of-life care. A few facilitators in delivery of this type of care were explored. Overall research in this area was sparse. Future studies should focus on understanding the complexities associated with delivery of pediatric end-of-life care in rural areas.