Abstract

Congenital heart disease (CHD) is the most common major congenital anomaly. Ninety percent of children with CHD are born in low- and middle-income countries (LMICs), where over 90% of patients lack access to necessary treatments. Reports on barriers to accessing CHD care are limited. Accordingly, it is difficult to design evidence-based interventions to increase access to congenital cardiac surgical care in LMICs. We performed a qualitative systematic review to understand barriers to accessing congenital cardiac surgical care in LMICs. We conducted a search of Ovid MEDLINE and CINAHL databases to identify relevant articles from January 2000 to May 2021. We then used a thematic analysis to summarize qualitative data into a framework of preoperative, perioperative, and postoperative barriers. Our search yielded 1,585 articles, of which 67 satisfied the inclusion criteria. Notable preoperative barriers included delayed diagnosis, insufficient caregiver education, financial constraints, difficulty reaching treatment centers, sociocultural stigma of CHD, sex-based discrimination of patients with CHD, and Indigeneity. Perioperative barriers included lack of hospital resources and workforce, need for prolonged hospitalization, and strained physician-patient relationships. Many patients faced barriers postoperatively and into adulthood due to a shortage of critical care resources, inadequate caregiver counseling and patient education, lack of follow-up, and debt from hospital bills and missed work. Reducing neonatal and childhood mortality begins with recognizing barriers to accessing health care. Our systematic review identifies and classifies challenges in accessing CHD in LMICs and suggests solutions to major barriers.

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