Impact of Hearing Loss and Comorbidity on Virginia's Children and Families

December 3, 2007

PI: Kathleen Bodisch Lynch, PhD, Partnership for People with Disabilities, Virginia Commonwealth University

Our long-term research objectives are: (1) to determine how comorbid congenital anomalies affect the identification, evaluation, and treatment of children with hearing loss, and (2) to assess the overall impact of a dual diagnosis of hearing loss and other congenital anomaly on the child and the family. We will link and analyze existing health system databases and talk to parents about their experiences. What we learn will help us improve the coordination and timely delivery of services that address these conditions and other health concerns, and reduce barriers that interfere with children's receiving appropriate intervention. We expect that our findings, and the innovative research methods used to obtain them, will serve as a model for other states. Our overall goal is to promote the health and well-being of children and families.

The specific aims of this study are: (1.1) to identify the target population of children born with HL/CCA in the Commonwealth of Virginia between January 1, 2001, and December 31, 2006, by de-duplicating the VaCARES data and linking to the Virginia EHDI data; (1.2) to determine the impact of comorbid congenital anomalies on screening, diagnosis, and intervention rates for hearing loss; (2.1) to identify barriers to access and receipt of services for children with hearing loss; and (2.2) to assess the impact of having a child with hearing loss and comorbid congenital anomalies on child and family expectations and relationships, priorities for intervention, family financial concerns, and access to and use of natural supports in the community. The interdisciplinary research team's combined expertise will ensure accomplishment of these aims.

The research will take place in two stages. First, we will take innovative approaches in biobehavioral informatics to link Virgina's birth defects and hearing screening databases. Analyzing the resulting data will give us a comprehensive, population-based picture of the diagnostic and treatment histories of children with HL or HL/CCA. Second, we will conduct telephone interviews with the most recent cohort of parents of identified children to build a context for interpreting the findings from the database analyses. Our rationale is that the first stage of research addresses the questions of "what" happened; the second, "why" it happened.

This research will provide information that ultimately will be used to develop strategies that guide providers in delivering earlier and more effective intervention for children with hearing loss and comorbid congenital anomalies. If we are to accomplish this goal, we must first find out where the problem lie, and then let families tell use their stories. That is what this study aims to do.