University of Edinburgh
 

Language and Deaf Education: Into the 21st Century

March, 2006

Alys Young -

Universal Newborn Hearing Screening – Language Issues

Notes from presentation

I am sure many of you were aware of a recent study of parents whose children were identified as deaf following screening. We spent time with the parents very early on in the diagnosis. We asked them to tell us about their feelings, thoughts and assumptions when they knew they had a deaf child. We talked to them about the effects of early knowledge. We also talked about language development for their children. This is a unique window into the first thoughts and experiences of these parents.

We need to think about our assumptions about this impact and how families grow and develop with that child still hold true. Are there new directions we should be sensitive to now?

The background issues: about the consequences of early identification. Background considerations: if you look around the world at the implementation of screening programmes the focus has been on the language of the deaf child. That has been our focus to date. There has also been focus on early intervention and the improvement of services associated. This is particularly true in Scotland. If we identify early we need to put in the services early too.

There has been less focus on the child in the context of the family - what are the effects of this? Factors we know are important and complex in helping us understand have not changed. The processes of adjustment and acceptance, social support influences, the quality and nature of the family, the extent to which people can adapt etc are all important.

How are these factors affected by early screening. These factors are still important. The changed conditions are as follows:

  1. The discovery mechanism is different - in the past it was the case that how parents got to know their child is how they discovered they were deaf.
  2. Identification now is by routine medical procedure - so parental involvement in the process is less.
  3. It is a compressed process from birth to identification so it happens before relationship forming. The intervention is also part of that process. It is seamless from birth to screening and intervention.

We need to understand this in terms of the impact on families. There are a range of claims for effects at the moment. There is a lesser degree of evidence. We hear things like the grief process is resolved quicker, the stress on the family is less, there is better bonding, and there are positive effects on the way the home environment develops. I'm sure you will have seen this yourselves.

We still know very little - that’s the exciting bit. If we are to make the best of the potential of early screening. NHSP - newborn hearing screening programme - research funded by the department of health. Last Thursday England went live for screening. This research looked at the first phase.

Audit of performance, maternal anxiety study, economic impact etc. The full report of the evaluation will be published on 1 April on the Department of Health website. The whole of the evaluation led by John Banford at the University of Manchester.

Three aims: evaluation of the screening process and its consequences. We wanted to understand personal influences. We wanted to find a way to enable families to define the criteria for what was good practice to us. The families to set the criteria for evaluation.

We adopted a qualitative interview approach. We were on the narrative side. We had issues we wanted families to cover. We wanted them to cover the same topics in a narrative way. The screening process, the discovery, the intervention and what they wanted professionals to know was the area of research.

The emphasis is more than asking their opinion, we were seeking to privilege parents epistemological position. Epistemology is the study of knowledge, so who has the right to this knowledge? Not everyone is equal in this.

We wanted parents’ knowledge - Collins research: the decisions we make about data are about who to trust, what to believe and why something is true. All presenters today are doing this. Accept that what I present today is the reality for parents interpreted by us as researchers.

Sample: parents chose whether they wanted to participate. the true case was defined by the national protocol. we did 27 interviews = 45 parents or carers. 25 of them were from screenings in hospitals the others were from the community.

  1. 2 families had other deaf children, 22% had illnesses or other disabilities.
  2. 5 families from ethnic minority backgrounds, 3 families where languages other than English was used.
  3. all parents and carers were hearing - we tried to recruit deaf parents but couldn't.
  4. the average age of the child was under 6 months - so very young.

when you see the statistics slide the code is the age of the child.

Diagnostic process - Child Care Health and development
Early audiological management issues -

What parents thought about knowing so early child was deaf. We explicitly asked the parents.

How they talked about issues of developments and expectations of early language. Spontaneous comments to us - we don't sit down and ask parents: what are your expectations of early development .

From the general to particular - overview of parents' attitudes to knowing early ; 3 sorts of attitude - very positive picked up early, initially positive but modified by perceived lack of action by those supporting, positive but wondering if happening too early.

Overwhelming majority - were clear they were very positive that known at early stage having a deaf children. A father of a 7 month-old with moderate hearing loss. Can only be a good thing to find this out. No obvious trend towards those parents interviewed with younger children, overall feeling it was a good thing. Why? Reassuring knowing is helpful. Things can be done, parents can do things differently from early on. The sense I know something can happen was reassuring. The father of an 11 month-old, detect it and then get in front with it.

Our parents were split between those who saw early identification as providing them with extra time, and those who saw it with loss of time - so much to be time - difference in perception of parents.

Effects of grief, shock, loss - none of the parents thought knowing early took away any of these feelings - hearing parents

  1. None thought it lessened feelings
  2. It would have happened anyway - getting to know it earlier
  3. Time to adjust to it

Would not want to avoid it - advantages of knowing early so great for the child. Trade off between painful feelings and the advantages coming through knowing early.

This is from a mother of ten month old profoundly deaf baby. You go through the process of almost grieving, gradual, it would happen at one point anyway, then child is 3. Things would be different if child 3 and happening now. I am sure things will turn out OK. This gives you a flavour for these parents.

A mother and father together. Breaking the news will be shitty at any stage. A vulnerable time for parents due to tiredness etc.

If you are diagnosed with cancer you go: you need to know at some point, the sooner the better.

You might be uncomfortable with the simile - cancer and deafness - powerful metaphor. Not blaming parents of inappropriateness. We all use knowledge we have to make sense of a new situation. A sense of catching a problem early was the feeling. It avoids guilt. Many talked of how they feel they would've felt guilty if they'd known later on - they might have thought their child naughty. They would have felt guilty later.

Positive because child can get used to their hearing aid. Part of just growing up. Despite difficulties it was a positive. Developmental advantages - avoiding missed opportunities, giving the best start possible, can sort the problem out, allows for positive expectations.

We had 5 interviews - initially positive - but then opinion changed. Eclipsed by perceived lack of action. Parents talked of being on a timetable. Knowing early created opportunities that shouldn't be missed. Frustration if services not acting quickly enough. A feeling like the child was losing ground, knowing early had not led to quick response.

Parent of a 4 month old. The whole thing is you tackle it at an early stage, get the auditory nerve to sort of work at an early stage and we haven't achieved that yet because we’ve not obtained ... that level in the digital ear we should have... at the moment he is not benefitting at... so we're still four months behind. We're still four months behind, we haven't benefitted from this newborn hearing.

We need to be sensitive to what is different for parents who respond like this.

3 families who talked about it as positive, but could have been done later. 2 had long running unhappinesses with the screening process. One had a child with moderate loss, unclear whether child would have hearing aid or not. Mother dissatisfied with the process.

For majority early is good and positive. But it does not solve problems. Advantages for most seem to outweigh the difficulties. New constructs around catching it early and needing to act quickly. Hard questions about anxieties being created. Frustrations with services and processes affecting appraisals.

How did parents talk about developmental advantage?
We had 10 families who expressed this in terms of expectations of normal development. Spoken language development that matched milestones of hearing children and happened close to same time. Children would manage in mainstream school on par with hearing peers. Not an unreasonable set of hopes. An overwhelming sense of expectations of normal development. Strongly expressed as assurance and confidence, linked with connection of early identification, spoken language development, fitting of hearing aids. More functional.

An example. From parent of 5 month-old with severe hearing loss. Picked up when 6 or 7 months old. You have to teach them to listen, whereas he’s actually just come along with it, he knows how to listen, its just like all positive, and she said like because he is so young being picked up to expect him to be even more sort of normal.

Asking questions about ways of understanding being engendered by way we are behaving as professionals.

Another group of parents talked of avoidance of previously expected problems with deaf children. Predicated on seeing positively the advantages of early intervention and hearing aid fitting.

Disturbing: told us horror stories from professionals - had given them comparative stories - what it had been like before for families. These families interpreted that with comparison with something not desirable previously.

Parent of 14 month-old. Told if not diagnosed then perhaps she could go off in her own little world and maybe like baby babble or talk whatever you want to call it, would eventually fade away.....

Another group of parents talking of developmental advantage. Parents talking of possibilities of enhanced developmental environments. Came from them spontaneously. How it is important to know early, to modify their speech, how they spoke with children, would play games differently, more sensitised to child's fears. Just telling you of the background. One family in a signed by lingual environment. A mother strongly playing with both languages. A family already with a Deaf child. Not entirely new family experiences.

8 families who did not comment. To get a context for the bigger view. One had a child who had much developmental need so deafness last priority. One saw deafness as such a big disadvantage could not get beyond that. 2 just negative another three very positive.

Where does this take us? These are the kinds of questions we need to ask. No particular answers. Are we seeing anything different here than we used to see for parents with children who are diagnosed later?

Is the construct of being under pressure, being on a timetable engendered by changed conditions of early intervention . Any link between how we behave and how parents respond? Emphasis on hearing aid rather than on language interaction more broadly. I am not bashing hearing aids. It is clear from the families the focus is on hearing aids not on language. You have to leave time for developmental growth, parents are on this massive learning curve. Should we be concerned that the focus is so much on hearing aids and not on language.

How much negative is in there about deafness and deaf children? Maybe parents have not encountered others. Overpowering metaphor is the recovering one, something can be done about it. More about diversity? Different ways of learning. Understanding deaf children can have same levels of achievement, but maybe do it differently. Something parents should be aware of at this early stage. Expectations of normal development - being made in comparison with old problems. In the past there were problems, now it is different - is that a problem.

A problem seeing expectations of normal development expressed in terms of comparison with hearing children?

Is there a problem that the comparison about achievement, outcome, wellbeing, made in terms of being like a hearing child? I have no answers to this.

Helen, myself and Wendy have been looking at these kinds of things. I would welcome discussion about them. I have 15 minutes -could have a discussion up to where I have got. Or you might want this in small groups. Or I can share some more data regarding sign language early on.

How did parents talk about language early on?
Overwhelmingly discourse was about spoken language. I got interested - so do parents ever mention sign language and in what context?

It is not about an opposition. Not trying to present it as this. It is part of the same way of trying to understand - what do parents know about signing early on - how do they connect it with knowing early on child is deaf.

6 different discussions. In 8 interviews where this discussion cropped up - only in 19 of  27 interviews. In 8 it was in the frame of - sign language is not appropriate, not that there is a choice to be made - different expressions of that. A child who had some motor difficulties - so not appropriate -child could not use their hands. From an expressive rather than comprehension point of view.

  1. Parents want child to speak so not relevant
  2. Early identity and hearing aids mean its not relevant
  3. Child not profoundly deaf so child does not sign
  4. Sign would mean the child had a problem.
  5. If want CI, sign is not on the agenda
  6. actively ant-signing. Don't want a child like the deaf adults they have met

They were not responding to someone they knew had deafness in the family.

In 5 interviews, parents talked of sign language positively as a fallback. Useful to keep in reserve if speech does not develop, or cochlear implant not suitable, early on with limited shelf life.

Parents were talking very early on - keep a non judgmental frame looking at this.

3 interviewees spoke to us about speech is society's way of communicating

  1. will need to talk to be accepted
  2. sign language is a minority language
  3. why would you want your child not to use majority language

How parents are beginning to understand what deafness means to them and their child.

2 interviews - different. Parents clear it is about giving the child the choice. It is insurance for the child and family. We have two families who took a different view

2 interviews - not one or the other - people in society sign and speak - people often do both - the more you put in the better

Undecided and still thinking about it - still looking for objective evidence.

These slides may go on world wide web. Data like these are dangerous because people read it as proof that signing is irrelevant; or - need to make sure parents get access to sign language.

We don't know enough about these families and their experiences. We should not offer judgements. WE can ask questions that this data provokes. Are these kinds of answers to the potential role of sign language in early development just the same as before? Or are we seeing the impact of a new normalisation narrative that is growing of how the advantages of early identification are being promoted?

We do know parents grow and change. This may not be their view later. We need some longitudinal research. We can be worried about lack, breadth and depth of experiences there. We can be worried about the lack of breadth. We can be concerned the messages from professionals. We can be concerned about medical model of deafness - different access to ways of understand. We can be concerned about how little is seen through the eyes of the child, rather than through the eyes of the parents. A lot of the attitudes, expressions -parents are not yet putting themselves in the position of looking from their child's perspective. Need to see how that grows

Alys.young@manchester.ac.uk

New Speaker
I found this interesting. Importance of longitudinal research - very important - speaking from the point of a 13 year-old deaf child - I resent looking back some of the professional guidance. Useful research no doubt, but important not to be judgmental. Normalisation the medical model - something caught early. These would have been my exact thoughts if interviewed at the time.

New Speaker
Joan Fleming, Teacher of the Deaf, are any parents opting out of the newborn screening programme?

New Speaker
99.5% take-up rate of the screening process

New Speaker
Any possibility of doing research of views of professionals regarding the screening?

Alys Young
A study starting - collaboration between national Deaf Children's Society, univ of Manchester and UCL London - longitudinal study - early identified deaf children in England - as part of that there is a strand looking at services, responses to early identified children and families. The nature of these services, quality - subsection of 45 families.

New Speaker
Now I am a parent. I am parent of a deaf daughter, now 3. My experience - we did not know if she was deaf, doctor approached us, had the screening test, she failed, they said they were sorry. Another doctor said, sorry she has failed - 3 years ago - we had an interpreter with us to talk to audiologist. Medical perspective again - telling us they were sorry she had failed. As a Deaf person, I knew my knowledge. What hearing parents are hearing and feeling about that information - information is power - I commend you on that document. It has an impact on how deaf people feel

New Speaker
I get confused by how we separate carers and a professional. Why divide that opinion towards each. I once attended a conference - I wanted to share the information with other parents who couldn't attend. To get someone to sponsor me - I had to pay for it myself - a professional said we do not consider you academically capable to get that information from the conference and bring it back to parents. I was going to bring it as a service user back to other service users. An area to stop the segregation between the two.

Alys Young
One consequence of such data is dialogue - a way parents and professionals jointly look at these issues. It is an evolving process. The most important people for parents are often the professionals whom they work so closely with. I agree.

New Speaker
Did you get insights from parents who went through screening but already had a deaf child and so first time they would not have gone through this - any perspectives there

Alys Young
Little data - 1 out of 27 relevant. When we looked at data to do with process of screening, leading up to referral to audiology - this family who had a deaf child presumed that meant their child was deaf -it had looked the same -only later realised it was a different element to that process. Our numbers are so tiny.

New Speaker
Sue - I work closely with 3 families with 2 deaf children - comments spontaneously are similar - 7 months blissful ignorance with my child - when I found out I knew him as my son.

New Speaker
How many of the parents were first time parents - it can take years to get a full night sleep again, let alone find out your child is deaf.

Alys Young
Ten out of 27 were first time parents.