Global Barriers to Pediatric Palliative Care: A Systematic Review

Key Message : Access to pediatric palliative care remains inequitable worldwide due to clinician training gaps, late referral, family/system barriers, and geographic disparities. Our review synthesizes evidence and actionable strategies, standardized referral triggers, language-concordant supports, rural outreach, equity metrics, and prioritizes pragmatic trials and culturally adapted QoL measurement to accelerate equitable PPC integration.

Abstract: Pediatric palliative care (PPC) improves quality of life for children with serious illness and families, yet access remains limited, especially in low-income, rural, and historically marginalized communities. This review synthesizes global barriers to PPC access and delivery.

Following PRISMA, we searched PubMed, CINAHL, and Web of Science (through 01/13/2025) for peer-reviewed studies involving children (0–18), caregivers, and PPC clinicians that examined barriers to access, delivery, or use. Three reviewers independently screened, extracted, and conducted thematic analysis across qualitative, quantitative, and mixed-methods studies.

Thirty-one studies from high-, middle-, and low-income countries met inclusion. Recurrent barriers included: (1) clinician training gaps and low comfort with PPC; (2) delayed referrals driven by prognostic uncertainty and fear of “giving up”; (3) family-level challenges (cultural beliefs, language barriers, mistrust); (4) system constraints (policy gaps, poor reimbursement, workforce shortages); (5) geographic disparities limiting availability; and (6) the misconception that PPC is only end-of-life. Evidence gaps persist: limited data from LMICs and rural regions, few implementation/pragmatic trials, minimal longitudinal follow-up, inconsistent use of validated and culturally adapted pediatric QoL measures, and scant evaluation of cost and workforce models enabling earlier integration.

Improving PPC access requires: targeted clinician training and mentorship; standardized referral triggers (e.g., uncontrolled symptoms, ≥2 unplanned hospitalizations in 6 months, new life-limiting diagnosis/technology dependence, high caregiver distress); language-concordant, family-centered supports; policy and reimbursement reforms; workforce strengthening; rural outreach; and explicit messaging that PPC is appropriate early in illness. Teams should track equity metrics quarterly (language concordance offered, rural reach, time from diagnosis to referral, referrals before the last month of life, missed-visit rates). Future work should prioritize implementation and pragmatic trials in LMIC and rural settings, routine and culturally adapted pediatric QoL measurement with longitudinal follow-up, and evaluations of cost and workforce models. Nurses and other frontline clinicians are well positioned to lead this work.

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