Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature. Issue 11 (16th February 2018)

• Record Type: Journal Article
• Authors: Haines, Emily R.; Frost, A. Corey; Kane, Heather L.; Rokoske, Franziska S.
• Is Part Of: Cancer. Volume 124:Issue 11(2018)
• Page Start: 2278
• Page End: 2288
• Publication Date: 2018-02-16
• Subjects: access to care or barriers -- adolescents -- children -- end‐of‐life care -- pediatric oncology -- pediatric palliative care (PPC) -- youth; Cancer -- Periodicals; Cancer -- Cytopathology -- Periodicals; 616.99405
• DOI: 10.1002/cncr.31265
• Languages: English
• ISSNs: 0008-543X

Abstract

Abstract : Although many of the 16, 000 children in the United States diagnosed who are with cancer each year could benefit from pediatric palliative care, these services remain underused. Evidence regarding the barriers impeding access to comprehensive palliative care is dispersed in the literature, and evidence specific to pediatric oncology remains particularly sparse. The purpose of the current review was to synthesize the existing literature regarding these barriers and the strategies offered to address them. The authors completed a literature search using the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Web of Science databases. In total, 71 articles were reviewed. Barriers to accessing pediatric palliative care were categorized according to the 4 levels of a modified socioecological model (ie, barriers related to policy/payment, health systems, organizations, and individuals). Major themes identified at each level included: 1) the lack of consistent and adequate funding mechanisms at the policy/payment level, 2) the lack of pediatric palliative care programs and workforce at the health systems level, 3) difficulties integrating palliative care into existing pediatric oncology care models at the organizational level, and 4) the lack of knowledge about pediatric palliative care, discomfort with talking about death, and cultural differences between providers and patients and their families at the individual level. Recommendations to address each of the barriers identified in the literature are included. Cancer 2018;124:2278‐88 . © 2018 American Cancer Society . Abstract : Although integrating pediatric palliative care into cancer care for children can benefit providers, patients, and their families, barriers have limited the widespread adoption of pediatric palliative care. Addressing this gap in care requires overcoming barriers at the policy, health system, organization, and individual levels.