Pediatric Palliative Care in the Multicultural Context: Findings From a Workshop Conference

Abby R Rosenberg; Kira Bona; Tumaini Coker; Chris Feudtner; Kelli Houston; Anisa Ibrahim; Robert Macauley; Joanne Wolfe; Ross Hays

doi:10.1016/j.jpainsymman.2019.01.005

Pediatric Palliative Care in the Multicultural Context: Findings From a Workshop Conference

J Pain Symptom Manage. 2019 Apr;57(4):846-855.e2. doi: 10.1016/j.jpainsymman.2019.01.005. Epub 2019 Jan 25.

Authors

Abby R Rosenberg¹, Kira Bona², Tumaini Coker³, Chris Feudtner⁴, Kelli Houston⁵, Anisa Ibrahim⁶, Robert Macauley⁷, Joanne Wolfe⁸, Ross Hays⁹

Affiliations

¹ Seattle Children's Research Institute, Treuman Katz Center for Pediatric Bioethics and Center for Clinical and Translational Research, Seattle, Washington, USA; Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA; Division of Hematology/Oncology, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA. Electronic address: abby.rosenberg@seattlechildrens.org.
² Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.
³ Seattle Children's Research Institute, Center for Diversity and Health Equity, Center for Child Health and Development, Seattle, Washington, USA; Division of General Academic Pediatrics, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.
⁴ Department of Medical Ethics, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; Departments of Pediatrics, Ethics, and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
⁵ Seattle Children's Research Institute, Center for Diversity and Health Equity, Center for Child Health and Development, Seattle, Washington, USA.
⁶ Division of General Academic Pediatrics, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.
⁷ Department of Pediatrics, Oregon Health and Sciences University, Portland, Oregon, USA.
⁸ Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA.
⁹ Seattle Children's Research Institute, Treuman Katz Center for Pediatric Bioethics and Center for Clinical and Translational Research, Seattle, Washington, USA; Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.

PMID: 30685496
DOI: 10.1016/j.jpainsymman.2019.01.005

Abstract

Context: In our increasingly multicultural society, providing sensitive and respectful pediatric palliative care is vital.

Objectives: We held a one-day workshop conference with stakeholders and pediatric clinicians to identify suggestions for navigating conflict when cultural differences are present and for informing standard care delivery.

Methods: Participants explored cases in one of four workshops focused on differences based on race/ethnicity, economic disparity, religion/spirituality, or family values. Each workshop was facilitated by two authors; separate transcriptionists recorded workshop discussions in real time. We used content analyses to qualitatively evaluate the texts and generate recommendations.

Results: Participants included 142 individuals representing over six unique disciplines, 25 of the U.S., and three nations. Although the conference focused on pediatric palliative care, findings were broadly generalizable to most medical settings. Participants identified key reasons cultural differences may create tension and then provided frameworks for communication, training, and clinical care. Specifically, recommendations included phrases to navigate emotional conflict, broken trust, unfamiliar family values, and conflict. Suggested approaches to training and clinical care included the development of core competencies in communication, history taking, needs assessment, and emotional intelligence. Important opportunities for scholarship included qualitative studies exploring diverse patient and family experiences, quantitative studies examining health disparities, and randomized clinical trials testing interventions designed to improve community partnerships, communication, or child health outcomes.

Conclusion: Taken together, findings provide a foundation for collaboration between patients, families, and clinicians of all cultures.

MeSH terms

Child
Cultural Diversity
Delivery of Health Care*
Hospice and Palliative Care Nursing
Humans
Palliative Care*
Pediatrics*