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A Good Start Parents’ evaluations of support following Newborn Hearing Screening in Trondheim, Norway Health and education joining forces Psykolog Nina J. Laugen Background Universal Newborn Hearing Screening since 2002 in Trondheim Hospital and educational services developed a common follow-up model Quick initiation of diagnostic assessments Parents get to meet professionals and other families soon after diagnosis Our study, A Good Start: An evaluation of parent follow-up: Do they get the support they need? Sample: Parents to children identified through Newborn Hearing screening 20022009 Two studies: – Research interviews – Questionnaires Research interviews: 6 families from the sample were interviewed – Ages of children: 1-6 years old – Differing types of hearing loss Open interviews: What are parents’ views on – Having a child with hearing loss – Support and follow-up from screening until today Phenomenological approach What do parents tell us? Information given at point of screening Living with uncertainties Screening: Possible explanations for refer: – Instrumental errors? - Fluid? – Ear channel too small? - Hearing loss? The possibility of hearing loss fades, or parents prefer the other explanations ”There were so many explanations… of course you embrace them, in a quite stressed situation.” Screening skills Experienced screeners, confidence in result Balanced information about possible causes: – Hearing loss is an actual possibility Being able to handle parents’ worries, instead of reassuring too early Screening skills… Detailed knowledge about what happens next Acknowledging the importance of meeting on further appointments Communication between Department of Audiology and Screening personnel is essential Psykolog Nina J. Laugen Coping with uncertainties What caused the hearing loss? What does my child hear and not hear? What about my baby’s language development? Often, we don’t yet have an answer! ”We wanted more support, so we wouldn’t have to sit alone trying to figure out something someone already knew” ”Of course we felt insecure, but even the hospital didn’t know any more than us. They told us everything they knew, and that was ok.” Being comfortable despite uncertainties Feeling insecure, and suspecting that there is some information out there, that is not available to you versus Feeling insecure, but also confident that everything there is to tell, has been told by the professionals Psykolog Nina J. Laugen ”Will he be able to talk?” Why don’t we get a clear answer? – Lack of experience? – Not updated? – No time or interest? Can we help parents by offering an outline of the complexities? Don’t save information for later We are not to decide the pace of parents’ information processing Psykolog Nina J. Laugen A Good Start – the questionnaires: Extensive questionnaire sent to the whole sample, about 70 families Details about follow-up, emphasizing information needs Parenting Stress Index (Abidin 1995): Stress and coping in the parental role To be finished spring 2011 Summary: • The importance of competent screening personnel •Uncertainties are easier to handle when information about reasons of uncertainties is given •Thank you! Psykolog Nina J. Laugen