More than 20% of children in the United States live with a chronic and serious illness. Parents who care for these children are challenged by children’s intense medical needs, navigating a complex health system, and significant time demands. For parents from ethnically diverse communities, such as Somali, Hmong, and Latin American, these challenges may be compounded by numerous social and structural determinants of health including language barriers, economic insecurity, and structural racism. Recent work by the presenters and research colleagues found that common contributors to miscommunication and mistrust were lack of access to quality professional interpreters and experiences of racism in the healthcare setting.
The use of a community-based participatory action approach allowed the presenters to explore the drivers of mistrust and offer community-centered recommendations to improve the outcomes and patient experience among ethnically diverse families of children with serious illness.
Learning Objectives: After attending this webinar, attendees will be able to:
- Discuss barriers and facilitators to trust in the healthcare setting.
- Discuss the value of Community-Based Participatory Research to reduce mistrust.
- Explore themes related to trust in parents of children with serious illness from the Somali, Hmong, and Latin American communities.
- Explore two key drivers of mistrust in pediatric serious illness care: language barriers and racism.
This is an event of the Office of Academic Clinical Affairs (OACA), hosted by the Center for Bioethics, and co-sponsored by the following U of MN Units: Center for Antiracism Research for Health Equity, School of Public Health; Center for Race, Indigeneity, Disability, Gender, and Sexuality Studies, College of Liberal Arts; College of Pharmacy; Community-University Health Care Center; Medical School; Program in Health Disparities Research, Medical School; Department of Pediatrics, Medical School; School of Dentistry; School of Public Health; School of Nursing.
Jennifer Needle, MD, MPH, HEC-C, is an Associate Professor in the Center for Bioethics and Department of Pediatrics at the University of Minnesota. She earned her MD from Howard University in Washington DC, and a Masters in Public Health in Epidemiology from Emory University Rollins School of Public Health. Dr. Needle completed her residency in Internal Medicine and Pediatrics and fellowship in Pediatric Critical Care at the University Hospitals of Cleveland/Rainbow Babies and Children's Hospital in Cleveland, Ohio. She completed her fellowship in Biomedical Ethics at the Center for Ethics in Health Care at Oregon Health & Science University in Portland, Oregon.
Dr. Needle joined the faculty at the University of Minnesota in 2013 after six years as an Assistant Professor for the Department of Pediatrics, Division of Critical Care, at Oregon Health & Science University. Dr. Needle is board certified to practice pediatric critical care medicine and general pediatrics. She has developed a national reputation as a leading early investigator in the field of pediatric palliative care and advance care planning. She has been a PI or co-I on grants from the National Institutes of Health and the American Cancer Society studying Adolescent and Young Adult Advance Care Planning in Cancer and Bone Marrow Transplant. Her work has been published in Critical Care Medicine, Pediatric Critical Care Medicine, Palliative Medicine, and The Journal of Clinical Ethics. Her current academic focus is on reducing health disparities in pediatric palliative care. She is collaborating with the SoLaHmo Partnership for Health and Wellness to utilize a community-based participatory research approach to understand barriers and facilitators to pediatric palliative care in the Somali, Latino/a/x, and Hmong communities. Dr. Needle serves as the co-chair of the University of Minnesota Medical Center Ethics Committee, and co-lead for the clinical ethics consultation service for MHealth Fairview system hospitals.
Shannon Pergament, MPH MSW, is a founding member of the Somali, Latino, and Hmong Partnership for Health and Wellness (SoLaHmo), a community-driven research program at Community University Health Care Center (CUHCC) a University of Minnesota affiliated community health center (CHC) in Minneapolis, MN. From 2014-2020 she served as Co-Director of Community Based Research at a large CHC in St. Paul, MN and is now Community Based Research Facilitator/Research Project Specialist at CUHCC. She has over 25 years of experience working in collaboration with ethnically diverse communities to identify community and cultural assets and maximize community health through community-based participatory research (CBPR); and as a consultant serving as a moderator, facilitator, and evaluator of community-academic research partnerships. Ms. Pergament’s work has involved the development, implementation and evaluation of pathways and processes to support community-driven research efforts, contributions to the science of CBPR, the development of research infrastructure in a community health center setting and participation as an active research team member on SoLaHmo studies as community co-investigator or community co-principal investigator.
Sey Lee, BS is a Hmong community researcher with the Somali, Latino, and Hmong Partnership for Health and Wellness (SoLaHmo). She graduated from the University of Minnesota-Twin Cities in neuroscience and public health. With experience in clinical research coordination of randomized controlled trials and case management for un/underinsured, limited-English proficiency, undocumented, and unhoused populations, she's interested in community-based participatory research (CBPR) as a tool for eliminating health inequities. She is driven towards ensuring research participation is accessible to all and representative of affected communities, as well as that the fruits of research are equitably shared. Sey is working towards a world where the differences in our communities don't lead to differences in health outcomes. Sey comes from a large family and sees community as an extension of family.