Pediatric palliative care through the eyes of healthcare professionals, parents and communities: a narrative review

Abstract

Background and Objective: Pediatric palliative care is a holistic approach that aims to enhance the quality of life of seriously ill children and their families. Despite the documented benefits, many barriers challenge early integration of such care. The lack of knowledge and negative attitudes and beliefs toward pediatric palliative care are often cited among these barriers. This narrative review aims to summarize the existing literature regarding knowledge, attitudes and beliefs toward pediatric palliative care among healthcare professionals, parents and communities. Methods: Four databases were searched: Medline, EMBASE, PsychINFO, and Cumulative Index to Nursing and Allied Health Literature Complete. The search strategy combined Medical Subject Headings, terms and keywords using Boolean operators to retrieve references addressing each concept of interest within the English literature. The initial search was conducted in August 2020 and updated in August 2021. No date limits were set. Two independent authors screened the retrieved papers for eligibility. Key Content and Findings: The majority of the 60 retrieved articles (n=49, 82%) were derived from high-income countries, with almost half of them from the United States. The references from developing countries were scattered across continents. The perspectives of healthcare professionals were more extensively explored compared to parents and community samples. Reports describe confusion between pediatric palliative care and end-of-life care. Yet, a positive attitude toward pediatric palliative care prevails whenever respondents possess accurate information about such care. Conclusions: This comprehensive review of different perspectives on pediatric palliative care helped in identifying the literature gaps and provided direction for future research in this area. The need to enhance accurate knowledge and promote understanding especially in developing countries was emphasized. This review also highlighted factors that influence knowledge, attitudes and beliefs toward pediatric palliative care, and identified the need for validated tools for research.