What Parents Want From Physicians Audiologists Bridge the Information Gap for Families of Infants With Hearing Loss Features
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Features  |   September 01, 2011
What Parents Want From Physicians
Author Notes
  • Maria Roetto, AuD, is an audiologist practicing at the Elks Hearing and Balance Center in Boise, Idaho. Her interest areas include pediatric audiology and early intervention as well as adult aural rehabilitation. Contact her at mroetto@elksrehab.org.
    Maria Roetto, AuD, is an audiologist practicing at the Elks Hearing and Balance Center in Boise, Idaho. Her interest areas include pediatric audiology and early intervention as well as adult aural rehabilitation. Contact her at mroetto@elksrehab.org.×
  • Karen Muñoz, EdD, CCC-A, is an assistant professor at Utah State University. Her research interest areas include systems of care for the early identification and management of pediatric hearing loss. Contact her at karen.munoz@usu.edu.
    Karen Muñoz, EdD, CCC-A, is an assistant professor at Utah State University. Her research interest areas include systems of care for the early identification and management of pediatric hearing loss. Contact her at karen.munoz@usu.edu.×
Article Information
Hearing Disorders / Features
Features   |   September 01, 2011
What Parents Want From Physicians
The ASHA Leader, September 2011, Vol. 16, 5-6. doi:10.1044/leader.FTR4.16112011.5
The ASHA Leader, September 2011, Vol. 16, 5-6. doi:10.1044/leader.FTR4.16112011.5
Hearing screening has become a routine procedure for newborns. When parents learn that further testing is indicated, however, it can be difficult and anything but routine. The baby’s primary care physician is often the first professional to see the family following discharge, and is expected to provide parents with guidance, but not all physicians are familiar with hearing loss and the information parents need to obtain appropriate and timely follow-up for their children. Pediatric audiologists are well-positioned to support physicians’ informational needs and play a critical role in communicating with physicians and educational outreach—in short, to be the experts.
Since the advent of universal newborn hearing screenings in 1993, the role of pediatric audiologists has expanded significantly and now routinely includes infants in need of services. Although the percentage of newborns screened for hearing loss in the United States has steadily increased in the last 15 years from fewer than 20% in 1997 to more than 95% in 2010 (White, Forsman, Eichwald, & Muñoz, 2010), the Centers for Disease Control and Prevention (CDC) reported that in 2005 and 2006, state early hearing detection intervention (EHDI) programs were unable to document the diagnostic findings for 65% of the infants who failed the hospital screening (Gaffney, Green, & Gaffney, 2010). Even though the increase in screening represents significant progress in the identification of hearing loss, efforts to connect families to services after failed newborn hearing screenings are not as successful.
Limits of Physician Knowledge
Even though hearing loss is one of the most common birth conditions, physicians do not frequently encounter hearing loss in their daily practice. When a physician’s practice includes a baby identified with hearing loss, the physician needs accurate and timely information.
To meet the unique needs of infants with hearing loss, services must be provided by pediatric audiologists with specialized knowledge, skills, and equipment. Given the increased demand for infant services resulting from newborn hearing screening, it is not surprising that physicians need support from knowledgeable pediatric audiologists to guide families effectively.
Pediatricians cannot—nor are they expected to—be the experts on hearing, the identification of hearing loss, or related services. A study completed by Moeller, White, and Shisler (2006) found physicians lacked knowledge of the protocol for identification of hearing loss, communication approaches, hearing aids and cochlear implants, etiologies of hearing loss, management of profound deafness, and management of unilateral or mild hearing loss.
Physicians want and need accurate information on infant hearing loss and intervention. However, they do not want too much information, and they want the information to be evidence-based (Muñoz, Shisler, Moeller, & White, 2009). In addition, physicians report they want to be directed to sources of further information when needed. Specifically, physicians report a desire for printed and graphic materials, laminated cards with clear protocol steps, brochures to use in patient education, and direction to frequently updated websites.
Audiologists can support the physician’s role by providing resources as they are needed. For example, the American Academy of Pediatrics developed a physician algorithm outlining steps to take following the diagnosis of a hearing loss (American Academy of Pediatrics, 2011). Additionally, outreach can include providing physicians with information on current best practices, facilities that provide comprehensive services for infants, local and state resources, and contacts for parent support organizations.
Parent-Physician Interactions
The interaction between parents and their child’s physician can influence how effectively parents are connected to appropriate services. A 2010 survey (Levine, Muñoz, & St. John, 2011) explored parent experiences with the diagnostic hearing assessment process (N=416). Comments indicated parents need physicians to know when and where to refer their child for testing:
“The medical professional disregarded the infant screening and did not recommend extensive testing. It was our own persistence that confirmed the hearing loss.“
“We were fortunate to have a lot of support from our local hospital/physician and audiologist in getting our appointments scheduled in a timely manner. They were extremely helpful in getting resources to us and providing us with everything they could to get us what we needed…“
Although we know what type of information physicians need to support parents, we don’t know what parents want from their physician after a failed screening and during the diagnostic process. To understand better the assistance and direction parents want from their physician when a child’s hearing loss is identified, a survey was administered to 18 parents of children with hearing loss at the Investing in Family Support Conference in Scottsdale, Ariz., in October 2009. The parents who attend this annual conference are involved in their state EHDI system and interested in improving the process for families. The insights of these parents, who understand the EHDI process and are most likely assertive and strong advocates for their children, offer valuable information.
Parent Interview Results
Survey responses revealed five main themes about what parents want from their children’s physicians; this information is helpful for audiologists as they consider strategies for physician outreach.
Information about hearing loss. Parents’ primary request of physicians was to provide unbiased, concise information about hearing loss, and that the information be in the form of pamphlets or direction to websites. Parents also wanted information on the steps to take when a hearing loss is suspected. One parent stated, “Please provide all information on everything. The only way parents and families can make appropriate choices, and change or adjust as needed, is if they get all information in a safe and unbiased manner.”
Validation of concerns about a child’s hearing. Parents want physicians to listen to their concerns about their child’s hearing. Many parents expressed frustration with their interactions with their child’s physician: they felt the physician didn’t fully appreciate their concerns and they wanted physicians to be more patient. One parent said, “Professionals need to remember that families and people are all different, not just in learning styles but in temperament and coping skills. There needs to be patience.” Another woman stated, “Don’t present information as if you know exactly how we are feeling. You don’t have a deaf child. You don’t know.” Another suggestion was to remember that parents are the ultimate decision-makers.
Information about early intervention. “Find us an outline of what our first year or two should look like. What tests should we have? What things should we be doing at home? Where should we go for answers?” Parents wanted physicians to explain all options available for children with hearing loss and provide information about communication-development milestones. Several parents requested early intervention options be discussed in a professional, organized, and unbiased manner.
Information about how to connect with parents and adults with hearing loss, as well as the Deaf community. Many parents want to create connections and network with other families of children with hearing loss. “Get the family peer/parent support. Having another family to talk to is invaluable,” stated one parent. Parent-to-parent connections, hearing other people’s journeys, and support group connections were also suggested, as was offering access to adults who are deaf and hard of hearing.
Humility, honesty, and understanding. Parents want physicians to be humble, honest, and understanding. One parent said, “If you don’t know the information, find it out.” Another stated, “We take their words and advice seriously. If they don’t know the answers, [they should] say so.” Parents wanted physicians to understand they need time to digest the new information. “Don’t condescend. Be ready to repeat what you have already told us. We may need to hear it several times. Also, don’t let us see you being impatient. We may stop asking the important questions.”
Physician Outreach
Parents need guidance and support after an infant fails newborn hearing screening, and as they begin the diagnostic and intervention process. The discovery of a child’s hearing loss raises a multitude of questions. Physicians are uniquely situated to provide support and guidance to parents throughout this process, although they may not be effective without support themselves. Although physicians do not have the time to be experts, they are central to the care of the child and provide guidance for the coordination of care for children in their practice (American Academy of Pediatrics, 2011). For this reason, they need to know where appropriate services can be obtained, what constitutes best practice, how to support parents, and how to access unbiased written materials and resources for parents.
The National Initiative for Children’s Healthcare Quality worked with interdisciplinary teams (which included audiologists and physicians) in several states to develop a toolkit that provides audiologists, physicians, and other stakeholders with practical resources. The resulting Newborn Hearing Screening Toolkit is designed to improve communication and the effectiveness of the follow-up process. This and other resources listed in the sidebar (online) provide valuable assets for parents and physicians.
Pediatric audiologists can provide outreach in many ways. Activities may include grand rounds presentations at the local hospital, provision of resources (such as contact information for state parent support organizations), a list of childhood hearing loss resources for parents, and copies of—or links to—best practice guidelines. Communication with the primary care provider (including phone calls and faxed reports) on a case-by-case basis when a baby is diagnosed with hearing loss is invaluable. Pediatric audiologists have a critical role in supporting physician involvement in the EHDI process that leads to families having access to comprehensive and quality services.
Resources
Sources
American Academy of Pediatrics (2011). National Center for Medical Home Implementation: Early Hearing Detection and Intervention (EHDI). (2011, January 31). Retrieved from http://www.medicalhomeinfo.org/how/clinical_care/hearing_screening/.
American Academy of Pediatrics (2011). National Center for Medical Home Implementation: Early Hearing Detection and Intervention (EHDI). (2011, January 31). Retrieved from http://www.medicalhomeinfo.org/how/clinical_care/hearing_screening/.×
Gaffney, M., Green, D., & Gaffney, C. (2010). Newborn hearing screening and follow-up: Are children receiving recommended services? Public Health Reports, 125(2), 199–207. [PubMed]
Gaffney, M., Green, D., & Gaffney, C. (2010). Newborn hearing screening and follow-up: Are children receiving recommended services? Public Health Reports, 125(2), 199–207. [PubMed]×
Levine, J., Muñoz, K., & St. John, R. (2011). The pediatric medical home and EHDI: An important piece of the puzzle. National EHDI Conference. Atlanta, GA.
Levine, J., Muñoz, K., & St. John, R. (2011). The pediatric medical home and EHDI: An important piece of the puzzle. National EHDI Conference. Atlanta, GA.×
Moeller, M. P., White, K. R., & Shisler, L. (2006). Primary care physicians’ knowledge, attitudes, and practices related to newborn hearing screening. American Academy of Pediatrics, 118(4), 1357–1370.
Moeller, M. P., White, K. R., & Shisler, L. (2006). Primary care physicians’ knowledge, attitudes, and practices related to newborn hearing screening. American Academy of Pediatrics, 118(4), 1357–1370.×
Muñoz, K., Shisler, L., Moeller, M. P., & White, K. R. (2009). Improving the quality of early hearing detection and intervention services through physician outreach. Seminars in Hearing, 30(3), 184–192. [Article]
Muñoz, K., Shisler, L., Moeller, M. P., & White, K. R. (2009). Improving the quality of early hearing detection and intervention services through physician outreach. Seminars in Hearing, 30(3), 184–192. [Article] ×
White, K. R., Forsman, I., Eichwald, J., & Muñoz, K. (2010). Evolution of EHDI and intervention programs in the United States. Seminars in Perinatology, 33(2), 171–179.2.
White, K. R., Forsman, I., Eichwald, J., & Muñoz, K. (2010). Evolution of EHDI and intervention programs in the United States. Seminars in Perinatology, 33(2), 171–179.2.×
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September 2011
Volume 16, Issue 11