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Evaluating an EHDI System: Parent Survey Project

Evaluating an EHDI System: Parent Survey Project. 2005 Early Hearing Detection and Intervention Conference March 2005 Atlanta, Georgia. Funding Source.

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Evaluating an EHDI System: Parent Survey Project

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  1. Evaluating an EHDI System: Parent Survey Project 2005 Early Hearing Detection and Intervention Conference March 2005 Atlanta, Georgia

  2. Funding Source • Centers for Disease Control and Prevention with Massachusetts (UR3/CCU118857-03) and Colorado (UR3/CCU818868-04) under PA 00076-Early Hearing Detection and Intervention (EHDI) Tracking, Research, and Integration with Other Newborn Screening Programs

  3. Project Awards • State Health Department EHDI Programs • Massachusetts Childhood Hearing Data System • Colorado Newborn Evaluation Screening and Tracking • Population of data begins with electronic birth certificate in both states • includes demographic, risk indicator, and diagnostic information

  4. Project Overview • Literature Review • Exploratory Study • Two main questions • What are the levels of families’ satisfaction and anxiety associated with the EHDI process? • What factors affect families satisfaction levels with the EHDI process?

  5. Family Involvement • Families are the primary stakeholders • Colorado and Massachusetts included parents in each phase of development of the study • Families reviewed and approved study questions • Instrumental in developing hypotheses after analysis of the preliminary results • Support provided to parents throughout the study process when requested

  6. Objectives • Conduct a pilot study of families’ satisfaction and anxiety levels • Determine the levels of families’ satisfaction and anxiety • Assess whether or not a child’s hearing status affects the levels of satisfaction • Examine other factors affecting the levels of satisfaction • Revise the three survey tools based on pilot

  7. Goals • Pilot Survey of Families’ Satisfaction with the EHDI Process • Pilot study that can be used by other states to evaluate the effectiveness of their EHDI Project • Contribute to the national EHDI Goals of providing effective family-centered services • Identify strengths and weaknesses in state EHDI systems

  8. Instruments Developed • Invitation letter • Three surveys (passed screen, passed out-patient, and diagnosed with hearing loss) • Translations of all documents into Spanish, including back translation to ensure cultural competency • State specific questions added at the end of surveys

  9. Protocol Summary • Pilot Study (Massachusetts and Colorado) • Families whose children passed an initial screen (group 1) • Families whose infant referred on initial screen, but passed out-patient (group 2) • Families with infants who are identified with permanent hearing loss (group 3)

  10. Design • Pool of questions from other studies, including Families Issues Committee • MA and CO, with technical assistance from CDC, modified questions and developed surveys Surveys coded and can be linked with state EHDI systems • Stratified random sample • over-sampled minority populations • increases analytical capacity for subgroups

  11. Surveys and Project Period • Distributed by mail • Group 1: 1,200 sent • born January 1, 2004 - July 1, 2004 • Group 2: 1,200 sent • born January 1, 2004 - July 1, 2004 • Group 3: 400 sent • born January 1, 2002 - April 30, 2004 • Follow-up telephone calls performed for group 3 only • Response rate approximately 25% for all 3 groups

  12. Parents Concerns • We live in a rural area and have to wait long periods of time to see audiologists and the ENT. • We were given very mixed messages at the hospital at the time of screening. There needs to be improved training on how to talk with parents. • There needs to be more advocacy for insurance companies to cover at least some of the expenses for hearing aids. • Parents should be present for the screening.

  13. Positive Feedbackfrom Parents • Thank you for having the newborn hearing test. My son’s result led to re-testing and enrolling in EI. Your process is working great. • I am grateful for the screening program. My son only has hearing loss in one ear so if he was never screened we would not know he has a hearing loss and would have missed out on EI. • We wish all states approved this law. All babies deserve this early start.

  14. Next Steps • Amend program protocols to incorporate feedback from families • Analyze and publish the results • Refine survey instruments • Make surveys available to states and territories

  15. Investigators and Collaborators • Vickie Thomson, MA, Colorado Infant Hearing Program • Janet DesGeorge, Families for Hands and Voices • Nancy Wilber, EdD, Massachusetts Department of Public Health • Janet Farrell, BA, MA Newborn Hearing Screening Program • Chia-Ling Penny Liu, Sc.D., MA Newborn Hearing Screening • Sarah Stone, BBA, MA Newborn Hearing Screening • Jessica MacNeil, MA, MPH, Newborn Hearing Screening

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