Factors Associated With the Use of U.S. Community–Based Palliative Care for Children With Life-Limiting or Life-Threatening Illnesses and Their Families: An Integrative Review

Abstract

ContextAs children with life-limiting illnesses (LLIs) and life-threatening illnesses (LTIs) live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families. ObjectivesThe purpose of this integrative review article is to explore factors that are associated with the use of CBPPC for U.S. children with LLIs and LTIs and their families. MethodsA literature search of PubMed, CINAHL, Scopus, Google Scholar, and an ancestry search was performed to identify empirical studies and program evaluations published between 2000 and 2016. The methodological protocol included an evaluation of empirical quality and explicit data collection of synthesis procedures. ResultsForty peer-reviewed quantitative and qualitative methodological interdisciplinary articles were included in the final sample. Patient characteristics such as older age and a solid tumor cancer diagnosis and interpersonal factors such as family support were associated with higher CBPPC use. Organizational features were the most frequently discussed factors that increased CBPPC, including the importance of interprofessional hospice services and interorganizational care coordination for supporting the child and family at home. Finally, geography, concurrent care and hospice eligibility regulations, and funding and reimbursement mechanisms were associated with CBPPC use on a community and systemic level. ConclusionMultilevel factors are associated with increased CBPPC use for children with LLIs or LTIs and their families in the U.S.