Health

Children with Early Hearing Loss and Existing Comorbid Health Conditions in New Jersey:
State Data and the Experience of Families

Children with Early Hearing Loss and Existing Comorbid Health Conditions in New Jersey: State Data and the Experience of Families was a collaboration between The Elizabeth M. Boggs Center on Developmental Disabilities, New Jersey’s University Center for Excellence in Developmental Disabilities, and the New Jersey Department of Health and Senior Services’ Early Hearing Detection and Intervention Program. This three-phase study examined the experiences and needs of families of children who have a health condition and who did not pass their newborn hearing screening or who were not screened before nursery discharge. Families of children born between 2004 – 2007 who met the study criteria were mailed a written survey. The survey and follow-up interview were developed within a Participatory Action Research framework, drawing upon insights from a family advisory committee of parents of children with diagnosed hearing loss and another health condition. Families who completed the survey, and consented to participate in a follow-up phase of the study, were called one year later and interviewed about their experiences raising and seeking services for their child. The interview questions examined social and emotional aspects of the families’ experiences.

These data were augmented with data from a survey of audiologists licensed in NJ. Audiologists responded anonymously to questions concerning their perception of the experiences and needs of families of children with hearing loss and another health condition, as well as about their experiences and comfort level with delivering audiologic and habilitative services to these children. The audiology survey was developed with input from NJ’s audiologic community.

The following themes emerged from the study:

• In describing what is important for health professionals to know about their child, parents said that it was important that they know about both the hearing loss and the other health condition/disability.  Beyond that, however, parents also wanted health professionals to be able to see their child as a whole person.

• While the majority of parents said that they felt their child’s primary doctor listens to their concerns about their child’s health, and were understanding of their situation as a parent of a child with a hearing loss and another health condition, fewer of the parents thought their child’s primary doctor was knowledgeable about their child’s hearing loss and other health condition.

• Lack of good communication between audiologists and pediatricians was a concern that was raised by both parents and audiologists.

• The audiology survey indicated that many audiologists are not as comfortable as they would like to be performing audiologic evaluations, or providing aural habilitation/rehabilitation, to children under 5 with multiple disabilities.  A high percentage responded that they would find it useful to receive further training in this area.

View Final Report - English
View Final Report - Spanish

Project Director: Deborah M. Spitalnik, PhD
Project Coordinator: Caroline Coffield, PhD