Enhancing Pediatric Palliative Care for Latino Children and Their Families: A Review of the Literature and Recommendations for Research and Practice in the United States

Abstract

As the demand for pediatric palliative care (PC) increases, data suggest that Latino children are less likely to receive services than non-Latino children. Evidence on how to best provide PC to Latino children is sparse. We conducted a narrative review of literature related to PC for Latino children and their families in the United States. In the United States, Latinos face multiple barriers that affect their receipt of PC, including poverty, lack of access to health insurance, language barriers, discrimination, and cultural differences. Pediatric PC research and clinical initiatives that target the needs of Latino families are sparse, underfunded, but essential. Education of providers on Latino cultural values is necessary. Additionally, advocacy efforts with a focus on equitable care and policy reform are essential to improving the health of this vulnerable population.

Quantifying the Language Barrier—A Total Survey of Parents’ Spoken Languages and Local Language Skills as Perceived by Different Professions in Pediatric Palliative Care

“…The obstacles of language barriers in pediatric palliative care have been reported by caregivers, especially in the context of accurate and complete dissemination of information [ 11 , 12 , 13 ]. From the perspective of foreign families, language barriers may result in dissatisfaction with care [ 14 ]; difficulties in utilizing health care services [ 14 , 15 ] and reduced quality of care [ 16 , 17 , 18 ]. In the clinical routine in general and particularly in pediatric palliative care, different strategies such as the involvement of (professional) translators are used to overcome language barriers between care providers and patients/families [ 13 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 ].…”

“…From the perspective of foreign families, language barriers may result in dissatisfaction with care [ 14 ]; difficulties in utilizing health care services [ 14 , 15 ] and reduced quality of care [ 16 , 17 , 18 ]. In the clinical routine in general and particularly in pediatric palliative care, different strategies such as the involvement of (professional) translators are used to overcome language barriers between care providers and patients/families [ 13 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 ]. The importance of the awareness and education of cultural characteristics is acknowledged by many healthcare providers, but is perceived as insufficient [ 26 , 27 , 28 ].…”

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

“…Leading life-limiting conditions include congenital malformations and chromosomal abnormalities (5740) followed by malignancies (1850). Minorities, such as Latinos, appear to have higher barriers to accessing PPC [ 4 ].…”

Communication Challenges Faced by Spanish-Speaking Caregivers of Children with Medical Complexity

“…28 Cultural differences between Hispanic families of children with serious illnesses compared to their counterparts also contribute to healthcare communication challenges. 29,30 System-level factors -providers sending forms, letters, and instructions, and leaving phone messages in English -made it di cult for SSP to access services for their CMC. This is because the healthcare system is designed for English-speaking patients.…”