Translating Research to Action: The Development of a Pediatric Palliative Cancer Care Advocacy Tool in Eurasia

Abstract

PURPOSE The Assessing Doctors' Attitudes on Palliative Treatment study was conducted in 11 Eurasian countries to assess physician knowledge of and structural barriers to integration of palliative care into pediatric oncology. After publication, regional collaborators identified the need to disseminate country-specific study results locally and provide policy recommendations to inform stakeholders. METHODS The Assessing Doctors' Attitudes on Palliative Treatment report was developed with Eurasian and St Jude pediatric palliative care and oncology experts to summarize study findings and deliver country-level data to local stakeholders. In parallel, an assessment was developed to explore how regional collaborators intend to use the report to improve local advocacy and dissemination of research findings. The country report and assessment were translated to English, Russian, and Mongolian. RESULTS Country-specific two-page reports display study findings on pediatric palliative care education, access to pediatric palliative care services, and barriers to and timing of integration with cancer care, alongside clinical and policy recommendations. These reports were distributed to collaborators in 11 countries. Assessment results (N = 30) demonstrated that regional collaborators planned to distribute the report to institutional and government stakeholders, aiming to increase access to pediatric palliative care services (77%), establish a community-based palliative care network (70%), and increase opportunities for specialization (70%). CONCLUSION We describe the development of an evidence-based advocacy tool to inform local health and education policy in Eurasia. This summary report of study findings, translated to local languages and adapted to a broader audience, is currently used to advocate for greater access and quality of palliative care for children with cancer. This work may serve as the basis for future dissemination efforts of scientific research.

Physician Perceptions of Palliative Care for Children With Cancer in Latin America

“…Beyond informing educational efforts, results from this study will be used to advise local leaders in Latin America on educational priorities to improve PPC for children with cancer. In Eurasia, a 2-page report for each country summarizing the results of the ADAPT study and identifying tangible opportunities for intervention was developed to inform local institutional and ministry of health leaders . Similarly, we will synthesize country-level data from our study to provide tools to local leaders to advocate for improvements in PPC based on their country’s specific needs.…”

Differences in the knowledge, attitudes, and needs of caregivers and healthcare providers regarding palliative care: a cross-sectional investigation in pediatric settings in China

“…Based on the age and cognitive abilities of the patient, standardized pain assessment scales are selected, and proactive measures are taken to improve pain symptoms and emotional health [ 50 ]. Simultaneously, PPC requires complementary and collaborative professional abilities among multidisciplinary team members, such as pain management, wound care, and psychological and social needs according to their professional strengths [ 51 ]. Thus, it is important to establish a long-term growth plan for multidisciplinary teams, regularly conduct team training, share case studies, and discuss and reflect.…”