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

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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: [email protected]

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