Upholding Human Dignity for Children with Medical Complexity and their Families

In this Complex Care Journal Club podcast episode, Ms. Bethlyn Vergo Houlihan and Ms. Meg Comeau discuss a qualitative study of the perspectives of families of children with medical complexity on what is needed to promote their quality of life and well-being. They describe the family-led approach to designing and conducting the study, the importance of upholding human dignity as a major theme, and next steps to translate their findings into systems change. SPEAKERS Bethlyn Vergo Houlihan, MSW, MPH Project Director, Principal Investigator Center for Innovation in Social Work & Health Boston University School of Social Work Meg Comeau, MHA Senior Project Director/Principal Investigator Center for Innovation in Social Work and Health Boston University School of Social Work HOST Kristina Malik, MD Assistant Professor of Pediatrics, University of Colorado School of Medicine Medical Director, KidStreet Pediatrician, Special Care Clinic, Children's Hospital Colorado DATE Initial publication date: July 1, 2024. JOURNAL CLUB ARTICLES Houlihan BV, Coleman C, Kuo DZ, Plant B, Comeau M. What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change. Pediatrics. 2024 Jan 1;153(Suppl 1):e2023063424F. doi: 10.1542/peds.2023-063424F. PMID: 38165241. Randolph G, Coleman C, Allshouse C, Plant B, Kuo DZ. Measuring What Matters to Children With Medical Complexity and Their Families. Pediatrics. 2024 Jan 1;153(Suppl 1):e2023063424C. doi: 10.1542/peds.2023-063424C. PMID: 38165239. TRANSCRIPT chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://op-docebo-images.s3.amazonaws.com/Transcripts/Upholding+Human+Dignity+for+Children+with+Medical+Complexity+and+their+Families_070124.pdf Clinicians across healthcare professions, advocates, researchers, and patients/families are all encouraged to engage and provide feedback! You can recommend an article for discussion using this form: https://forms.gle/Bdxb86Sw5qq1uFhW6 Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children’s Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open access-and thus at no expense to the user.For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu CITATION Houlihan BV, Comeau M, Malik K. Upholding Human Dignity for Children with Medical Complexity and their Families. 7/2024. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/upholding-human-dignity-for-children-with-medical-complexity-and-their-families