Our Caring for the Caregiver Program

We have teamed up with Mt Sinai Hospital's NY Eye and Ear Infirmary to support this exciting new program. 

A child born profoundly deaf faces many challenges, among them developing communication skills. Post implantation, while direct and professional speech and hearing therapy with the child and occupational therapy (to the extent related to the child’s hearing loss) is obviously essential, experience shows that support of the caregiver (the parent and her siblings) through adult peer interaction and professional support improves the life of the child.  In short, PIH seeks to supplement professional therapy by helping the caregiver understand the challenges faced to create and enhance home support to improve the success rate of the deaf child in the mainstream. To be sure, there is an impact of a child’s hearing loss on the whole family system – we at PIH seek to address that impact through this Care for the Caregivers project.

Project Narrative:  We partially fund the program in conjunction with New York Eye and Ear Infirmary of Mount Sinai Hospital (NYEE) www.nyee.edu to provide support for the parents and caregivers.  Group educational and support sessions are adults-only support groups with limited childcare for younger children.  

Project Goals and Objectives: 

•  Disseminate information and increase knowledge of parents/families of children with hearing loss who have been cochlear implanted

•  Provide opportunity for peer interaction and group support

•  Improve well-being of caregivers of children with hearing loss

•  Create optimism through meeting older implanted children and meeting their parents. 

When/where:  Sessions are weekdays, 1 – 2 times a month at NYEE.  Sessions will alternate between an informational session and a support group every other session.

Who:  Trained social workers and support team

Time:  1 hour per session

Potential topics in addition to parent discussion might include:

•  Newly diagnosed hearing loss and cochlear implantation.  Understanding the challenges. 

•  Building a resilient child (preventing and addressing bullying)

•  Family system support (caring for the caregiver, co-parenting, siblings)

•  Audiology Basics: How to read an audiogram, mapping, and understanding technology

•  Importance of follow up care

•  Dealing with frustration and feelings

•  Compliance with equipment

•  Advocating for your child in school and other settings

Format:  Adults will meet with the social worker and other clinicians in a pleasant conference room while children ages 1 – 4 with hearing loss who do not have child care options will be in held in a speech therapy room working on play/social interaction/language skills.

Recruitment: Audiologists and speech therapists will identify families who would benefit from this program. 

Outcome measurement:

•  Attendance, level of sharing of experiences and participation.

•  Brief survey at the end of each session seeking comments

•  Validated assessment of parental stress: Parental Stress Index questionnaire PRE and then POST for those who come to at least 2 sessions

Additional resources needed:  Light refreshments for parents

Primary Contacts at Mt Sinai NYEE are:

George Wanna, MD, FACS  gwanna@nyee.edu  (212) 614-8387

Professor of Otolaryngology-Head and Neck Surgery, Professor of Neurosurgery, Icahn School of Medicine at Mount Sinai. 

Chair, Department of Otolaryngology New York Eye and Ear Infirmary, Mount Sinai & Mount Sinai Beth Israel.

Chief of the Division of Otology-Neurotology, Mount Sinai Health System
Director of Audiology, Hearing and Balance Center, Mount Sinai Health System.

Director of the Ear Institute, Mount Sinai Health System

Maura Cosetti, MD, FACS  mcosetti@nyee.edu  (212) 979-4071

Associate Professor of Otolaryngology-Head and Neck Surgery, Associate Professor of Neurosurgery, Icahn School of Medicine at Mount Sinai

Chief of the Division of Otology-Neurotology, Mount Sinai Downtown

Associate Director of the Ear Institute, Mount Sinai Health System.