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UNHS and early identification of deafness: Parents’ responses to knowing early and their expectations of child communication development
Dr. Alys Young/ University of Manchester was available from 1/11/10 to 1/31/10
to answer questions and share ideas concerning her research with Dr. Helen Tattersall and its implications for parents of children who are deaf/hard of hearing, their teachers and other professionals who work with them.
You are encouraged to read the research summary below and review the attached discussion.
This research involved hearing parents with deaf children who had been early identified through universal newborn hearing screening (in England). We interviewed in depth, using story telling methods, 45 parents/carers (i.e. in one case a grandmother was interviewed who was the main carer). All parents were interviewed in the very early stages after having been told their baby was deaf. The average age of their children when parents were interviewed was 25 weeks old. We focused in this part of the research on two issues: (i) how parents talk about significance of knowing early that their child is deaf; (ii) parents’ expectations of their child’s development in light of early identification. Results demonstrated clear support from parents’ perspective of knowing early but they also identified new issues to be considered: the psychological complexities of simultaneous emotions of both the grief and reassurance that early knowledge brings; the risks of early knowledge inducing timetables of expectations that create distress when not met speedily; the extent to which parental models of the developmental advantages of early identification are underpinned by notions of normal speech and the possibility of ‘being like’ hearing children; the pervasiveness of deficit and illness models associated with having identified deafness early. Implications for parental support and professional responses are also discussed.
The early identification of deaf children as a result of programmes of universal newborn hearing screening has promoted a huge interest in the impact on children’s linguistic, cognitive and social development. But there has been far less attention paid to the impact on parents in particular (and families more generally) of knowing so very early that their new family member is deaf. A great deal of work has been done in the past on how hearing parents ‘adjust’ or ‘come to terms’ with knowing they have a deaf child. However, this was all done in the era before routine early identification. The situation is now very different. In England (and elsewhere) the average age of diagnosis is now 9 weeks, not 26 months; parents know they have a deaf child much earlier on in the initial processes of bonding and coming to terms more generally with a new infant in the family; professional intervention services are involved with families from a much earlier age and for a more protracted period of time. We have very little research on how such changes impact parents and families; therefore we have no idea as professionals and/or as researchers whether our assumptions and wisdom from the previous age of ‘late’ identification still hold true. Without understanding the new situations in which hearing parents of deaf children now find themselves how can we be equipped to fully identify their needs, support them and respond appropriately?
The 45 parents/carers who took part all had babies who were early identified through the universal newborn hearing screening programme in England. The 45 parents equated to 27 families who participated in the study (in some cases mum and dad were interviewed together; or grandma was included as well as she was a main carer too). Parents were interviewed in their own homes by a researcher who had sent them in advance a copy of the areas of discussion that we wanted to cover. Rather than asking lots of questions, we adopted a more story telling approach in which parents were invited to explain what had happened to them and their views and feelings. The researcher made sure that in all case the same topics were covered that we were interested in, but parents drove the narrative. In this way, we as researchers put ourselves in a learning position, waiting to hear what it was that parents would choose to emphasise, how it was they would express or explain their experience. Later all interviews which had been recorded, were transcribed verbatim and we used an approach to data analysis that enabled us to group themes that were common between participants but which still allowed us to recognise differences and which preserved parents’ own preferred means of expression.
The vast majority of parents were clear that knowing early was positive. But they were also clear that knowing early did not lessen their distress nor take away their sense of grief. Instead most parents were dealing with a new kind of experience. They simultaneously were distressed and positive (about the advantages of early knowledge, which in different ways could be comforting). This is complex emotion.
A minority of parents were very unhappy about early identification believing it to have spoiled their relationship with their new baby.
A small group of parents who had been positive at first, were now becoming more frustrated and angry because they felt that the potential advantages of early identification were not being fulfilled because services were not reacting quickly enough. Indeed there were some parents who described themselves as being on a timetable where early identification was requiring speedy action otherwise their babies would “fall behind”. Early identification was not being seen as helpful and was causing considerable distress.
Parents’ overwhelming assumptions about the advantages of early identification were that their children would grow up to be “normal”, by which was meant: that they would achieve fluent spoken language; they would educationally achieve in a similar manner to hearing children; their development overall would not be hampered by being deaf. Some likened the situation to identifying a life threatening illness, where early identification would mean that something could be done about it and the patient would be cured. Others saw it in terms of avoiding the mistakes of the past where deaf children were not recognised until much later and so help could not start early and they missed out on so many advantages. A few parents saw the advantage in lying with helping them to understand what was different about their deaf child and how to respond in ways that were most helpful to their development ‘as a deaf child’. However, for the overwhelming majority, early identification and early intervention meant that their children could develop in effect as hearing children and would not have the ‘problems’ of deaf children in the past. As parents they could take action and the future would be positive.
In the discussion of this paper we look in more detail about what the implications might be for professionals/interventionists of differently complex grief responses. The chance for parents to take early action and feel that something can be done can be very comforting, but for some will this mean that important working through of emotions is delayed or does not happen? We remind the reader that we have recorded parents’ reactions in the very early stages of their experiences and so it is important not to be judgemental about their initial reactions but to value what they tell us about what we as professionals may need to be alert to. For example, it is understandable that parents with no previous experience of deaf children may liken deafness to illness and early identification to the potential to cure – so how do we assist parents to expand their understanding and consider deaf children in other ways? To what extent do professionals/interventionists who tell parents they are much better off than in the old days of late identification do them good service, or reinforce unhelpful expectations? Early identification does unlock new possibilities for deaf children to achieve their optimum potential, but what are the potential problems of that being seen in terms of ‘being like a hearing child’?
Alys Young and Helen Tattersall (2007). Universal Newborn Hearing Screening and Early Identification of Deafness: Parents' Responses to Knowing Early and Their Expectations of Child Communication Development. The Journal of Deaf Studies and Deaf Education 2007; Volume 12 (2) February 2009 pp 209-220.
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