Dércia Materula, Genevieve Currie, Xiao Yang Jia, Brittany Finlay, Ai-Men Lau, Catherine Richard, Meridith Yohemas, Myka Estes, Nadine Gall, Tammie Dewan, Sarah MacEachern, W Ben Gibbard, Jennifer D Zwicker
BACKGROUND: Caregivers of children with neurodevelopmental disorders and medical complexities (NDD-MC) coordinate care across complex multisectoral systems. Often NDD-MC children have complex behaviors, however there is limited information on coordination needs for families. AIM: The objective of this mixed methods study was to understand the needs of families with NDD-MC children. METHODS AND PROCEDURES: This sequential exploratory study obtained the perspectives of 67 caregivers of NDD-MC children using semi-structured interviews and validated questionnaires to measure family quality of life, care integration, and resource use...
August 13, 2024: Research in Developmental Disabilities