title: How to motivate newborn hearing screening in the absence of a national programme: a collaboration between parents and professionals.
abstract: The establishment of the Italian Pediatric Federation Newborn Hearing Screening Network and the Italian Society of Neonatology Infant Hearing Study Group is the result of an international collaboration between Parents and Medical Professionals in order to promote an effective model in developing Early Hearing Detection Intervention Programs that recognize the role of parents as partners in the process.   Among other factors, one important component frequently underestimated in most early intervention programs, both in the USA and other countries, involves the role of parental involvement within the Early Hearing Detection Intervention (EHDI) process. When a parent receives the news of their child's hearing loss, reactions may include, but are not limited to denial, grief, guilt, shame, fear and impotency. A parent may begin to ask certain questions: How do we know if the professionals in our children's lives are capable, educated, trained, up to date in their chosen fields of expertise? Do they respect our children and us as parents? Do they understand the needs of children who are deaf or hard of hearing? A life-long health professional - parental collaboration begins at the moment of the diagnosis of that child.   When analyzing the habilitation process of a deaf child, the relationship between health professionals and the crucial role of parents in raising that child is a 50-50 shared responsibility. An objective of EHDI programs must be to empower parents by providing support from the beginning of the process. Distributing informative literature regarding the newborn hearing screening process and providing parents with access to resources such as parental support groups upon diagnosis equips parents with the tools necessary to immediately begin advocating for their children. The Italian Federation Pediatric Audiology Network was created by combining the parental perspective and medical protocols in order to establish the roots for stronger EHDI programs.
authors.affiliation: Global Coalition of Parents of Children who are Deaf and Hard of Hearing, Italy. jodi.cutler@alice.it
authors.forename: Jodi
authors.initials: J
authors.lastname: Cutler
authors.forename: Giovanni
authors.initials: G
authors.lastname: Lenzi
authors.forename: Stefano
authors.initials: S
authors.lastname: Berrettini
authors.forename: Alessandro
authors.initials: A
authors.lastname: Martini
authors.forename: Stefano
authors.initials: S
authors.lastname: Martinelli
mesh_terms: D001294:Attitude to Health; D003299:Cooperative Behavior; D018479:Early Intervention, Educational; D034381:Hearing Loss / Q000151:congenital / Q000175:diagnosis* / Q000628:therapy; D006320:Hearing Tests / Q000706:statistics & numerical data; D006801:Humans; D007231:Infant, Newborn; D007232:Infant, Newborn, Diseases / Q000175:diagnosis* / Q000628:therapy; D009042:Motivation / Q000502:physiology*; D009313:National Health Programs; D015997:Neonatal Screening / Q000706:statistics & numerical data*; D010290:Parents; D011368:Professional-Family Relations