TY - JOUR
T1 - Pediatric Palliative Care in the Multicultural Context
T2 - Findings From a Workshop Conference
AU - Rosenberg, Abby R.
AU - Bona, Kira
AU - Coker, Tumaini
AU - Feudtner, Chris
AU - Houston, Kelli
AU - Ibrahim, Anisa
AU - Macauley, Robert
AU - Wolfe, Joanne
AU - Hays, Ross
N1 - Funding Information:
The one-day conference (“Pediatric Palliative in a Multicultural Context: a conversation to determine our priorities in research and clinical care for children with life-limiting illness within the context of our diverse culture”) was held in July 2018 in Seattle, WA, with financial support provided via a grant from the Arthur Vining Davis Foundations. We advertised through list-serves for the AAP and American Academy of Hospice and Palliative Medicine special interest groups, national meetings, including the 2017 American Academy of Hospice and Palliative Medicine Annual Assembly, postcard mailings for the annual Seattle Children's bioethics conference, and informally, by networking within the pediatric palliative care community.
Publisher Copyright:
© 2019 The Authors
PY - 2019/4
Y1 - 2019/4
N2 - 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.
AB - 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.
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U2 - 10.1016/j.jpainsymman.2019.01.005
DO - 10.1016/j.jpainsymman.2019.01.005
M3 - Article
C2 - 30685496
AN - SCOPUS:85063029997
SN - 0885-3924
VL - 57
SP - 846-855.e2
JO - Journal of Pain and Symptom Management
JF - Journal of Pain and Symptom Management
IS - 4
ER -