Co-Design & Collaboration: Global Pediatric Palliative Care Research to Address Care Inequities

{"title":"Co-Design & Collaboration: Global Pediatric Palliative Care Research to Address Care Inequities","authors":"Marta Salek MD MPH,&nbsp;María Reyna MA,&nbsp;Debora Rebollo De Campos MSN,&nbsp;Joliza Caneba MD,&nbsp;Xuan Zhou MD,&nbsp;Ximena García-Quintero MD MSc,&nbsp;Michael McNeil MD MPH","doi":"10.1016/j.jpainsymman.2025.02.034","DOIUrl":null,"url":null,"abstract":"<div><h3>Outcomes</h3><div>1. Participants will learn about the application of three distinct research methodologies and their applications to answer research questions related to pediatric palliative care.</div><div>2. Participants will learn about three ongoing research studies that aim to support decision-making, pain management, and expanding pediatric palliative care access and consider the application of the research results to local practice in the United States.</div></div><div><h3>Key Message</h3><div>Over 97% of children needing palliative care provision live in low- and middle-income countries. Despite this need, most pediatric palliative care (PPC) research has been conducted in high-income countries. Generated knowledge may not translate across contexts and cultures. Here, we describe research co-designed to improve PPC access.</div></div><div><h3>Abstract</h3><div>Over 97% of children needing palliative care live in low-and middle-income countries (LMICs) with most lacking access. However, most pediatric palliative care (PPC) research has been conducted in high-income countries. Generated knowledge may not translate across countries, contexts, and cultures. To address this inequity and address local challenges, collaborative co-design and building research capacity is imperative. Here, we describe examples of collaborative research to improve PPC access globally.</div></div><div><h3>Objective</h3><div>Provide three examples of research initiatives to address inequities in PPC provision co-designed with partners in LMICs.</div></div><div><h3>Methods</h3><div>The first is a mixed methods project studying physician perceptions towards PPC for children with cancer designed in response to partners voicing a need to address inequities to PPC access. The second is a quality improvement (QI) initiative to reduce needle-based procedural pain in children designed in response to partners voicing challenges related to pain management in LMICs. Finally, the third is a qualitative study assessing patient and caregiver approaches to decision-making for children with poor-prognosis cancer at diagnosis that was designed in response to partners voicing challenges to decision-making for these children.</div></div><div><h3>Results</h3><div>The mixed methods study has now been adapted by regional experts and distributed to 129 countries, with findings guiding local educational, advocacy, and research initiatives. The QI initiative was piloted in four hospitals and then expanded to 26 around the world with &gt;50% reduction in pain. The qualitative study was designed for use in three culturally distinct countries and results will contribute to future intervention design to support complex decision-making. These initiatives contributed to building local research capacity.</div></div><div><h3>Conclusion</h3><div>Research addressing inequities in global PPC provision must be collaboratively co-designed with partners in LMICs and ideally led by LMIC investigators trained in diverse research methodologies. The examples above highlight successful experiences of collaborative research and capacity building.</div></div>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":"69 5","pages":"Pages e427-e428"},"PeriodicalIF":3.2000,"publicationDate":"2025-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of pain and symptom management","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0885392425000946","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}