Background: Specialty pediatric palliative care services can help to address unmet care needs for children with complex and serious illness. Current guidelines support the identification of unmet palliative care needs; however, it is unknown how these guidelines or other clinical characteristics influence pediatric palliative care referral in research and practice. Aim: To evaluate the identification and application of palliative care referral criteria in pediatric illness care and research. Design: A scoping review with a content analysis approach to summarize results. Data sources: Five electronic databases (PubMed, CINAHL, PsycINFO, SCOPUS, and Academic Search Premier) were used to identify peer-reviewed literature published in English between January 2010 and September 2021. Results: We included 37 articles focused on the referral of pediatric patients to palliative care teams. The identified categories of referral criteria were: disease-related; symptom-related; treatment communication; psychosocial, emotional, and spiritual support; acute care needs; end-of-life care needs; care management needs; and self-referrals for pediatric palliative care services. We identified two validated instruments to facilitate palliative care referral and seven articles which described population-specific interventions to improve palliative care access. Nineteen articles implemented a retrospective health record review approach that consistently identified palliative care needs with varying rates of service use. Conclusions: The literature demonstrates inconsistent methods for identifying and referring children and adolescents with unmet palliative care needs. Prospective cohort studies and clinical trials would inform more consistent pediatric palliative care referral practices. More research is needed on palliative care referral and outcomes in community-focused pediatrics.

Objective: This study was designed to give mothers with opioid use disorder (OUD) and their families a “voice” in sharing their experiences surrounding the relationship with health care staff in the care of their newborn with neonatal abstinence syndrome (NAS) and aimed to identify their perceptions of the care received during their newborn’s hospitalization. Methods: A cross-sectional study was administered through Qualtrics online survey software. The survey questions with quantitative and qualitative components were developed and validated by the researchers to explore perceptions and experiences regarding the care the mother and the infant received, and their feelings about whether they were adequately educated and prepared to care for themselves and infant with NAS. A convenience sampling method was used to recruit mothers (18 years old and above) who gave birth to infants with NAS as well as their family members from the Department of Behavioral and Community Health in the Northeastern United States. Descriptive analysis methods were used to describe the quantitative survey data and thematic content analysis approach was used to explore the qualitative narrative data. Results: Twenty mothers were eligible for the study and a total of 10 mothers and 3 grandmothers participated in the final study. Primary outcomes for quantitative results from mothers were frustration based on how they were treated, the belief that the newborn required the neonatal intensive care unit, and the conclusion that they were treated inferiorly compared with mothers without OUD. Four major themes identified by the mothers were: judgment by the health care providers, trying to be a good mother, education needs of mothers to receive more information about NAS, and not understood by the health care providers and the need for training specified to caring for OUD during pregnancy and NAS. Results of the grandmothers’ study demonstrated a deficiency in personal knowledge about caring for an infant with NAS, and a belief that the mother was treated poorly due to her history. Conclusions: Women with OUD are blamed and stigmatized for their decisions and experience a lack of knowledge in caring for their infants. While further research is warranted in exploring these topics, the disparities between this population and health care providers may increase health risks for both the mother and newborn.