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 2002-2009

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