15th ANNUAL EARLY HEARING DETECTION & INTERVENTION MEETING
March 13-15, 2016 • San Diego, CA
3/14/2016 | 2:00 PM - 2:30 PM | Topical Session 2 | Royal Palm 5/6 | 7 - Family Perspectives and Support
Expanding the Role of Parent Advisors
The inclusion of parent advisors has been recognized as an integral component to a successful EHDI program for many years. Peer-to-peer support programs are also available in many states. The benefit of input from patients and families is not limited to EHDI programs. The University of Michigan Medical Center has created formal programs based upon principles established by the Institute for Patient and Family Centered Care (PFCC). By definition, PFCC is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among medical providers, patients, and families1. Currently, University of Michigan staff is assisted in planning and decision-making from 30 patient advisory councils and over 250 onsite patient and family advisors within the medical center.
The University of Michigan created the Sound Support program ten years ago to improve the effectiveness and timeliness of early identification of hearing loss. Sound Support recognizes that a partnership between families and providers, offering mutual education, is essential to the success of this mission. In addition to providing training to educators and medical professionals, families are supported as needed from the time of initial diagnosis of hearing loss through young adulthood. Over time, engaging families in their own experience of care has become increasingly prominent as a key to success for the Sound Support program. Most recently, a parent liaison was added as a permanent staff position to provide parent to parent support, along with coordinating PFCC initiatives within the clinic. This presentation will provide an overview of how PFCC core principles have provided a framework and shaped the work of the parent liaison from the perspective of an administrator, parent liaison and audiologist.
1 Institute for Patient and Family Centered Care website: www.ipfcc.org/faq.html.
- Describe PFCC core principles.
- Using the PFCC principles as a framework, identify three ways parents can serve as partners in decision and policy making for EHDI programs
- Discuss methods to recruit, screen and retain parent onsite or e-advisors.
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Presenters/Authors
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Angelique Boerst
(Primary Presenter), University of Michigan Medical Center, boerst@umich.edu;
Angelique Boerst is an audiologist at C.S. Mott Childrens Hospital within the University of Michigan Medical Center. In addition to completing hearing assessments of children, she has been a team member of the Sound Support Program which provides outreach and support services to families of children who are deaf/hard of hearing.
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No relevant financial relationship exist.
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No relevant nonfinancial relationship exist.
Jennifer Wilcox
(Co-Presenter), University of Michigan Medical Center, jnwilcox@umich.edu;
Jennifer Wilcox is the proud mother of two children, one of whom is Deaf/Hard of Hearing. Ms. Wilcox is currently the Patient and Family Center Care Coordinator in Pediatric Otolaryngology at the University of Michigan Medical Center. In this role, she shares her experiences raising a child who is Deaf/Hard of Hearing with staff, residents and audiology students. Her position includes coordination of education materials and outreach activities for families through the Sound Support Program. She is actively involved in Patient and Family Centered Care activities throughout the University of Michigan Medical Center.
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Jaynee Handelsman
(Co-Presenter), University of Michigan Medical Center, jaynee@umich.edu;
Jaynee A. Handelsman, PhD, CCC-A, is the director of pediatric audiology in the CS Mott Children’s Hospital and a clinical assistant professor in the Department of Otolaryngology–Head and Neck Surgery in the University of Michigan Health System. Her primary clinical, teaching, and research areas of focus have included the assessment and management of patients with dizziness and balance disorders, as well as the impact of potentially ototoxic medications on auditory and vestibular system function. She is also involved in the identification and management of hearing loss and vestibular function loss in infants and young children, as well as in professional ethics and conflicts of interest.
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