Perceptions of Down Syndrome: A growing awareness? Investigating the views of children and young people with Down Syndrome, their non-disabled peers and mothers

Deakin, Karen Anne (2014) Perceptions of Down Syndrome: A growing awareness? Investigating the views of children and young people with Down Syndrome, their non-disabled peers and mothers. PhD thesis, University of Glasgow.

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A body of literature has examined the understanding adults with intellectual disabilities have of their disability, their awareness of stigma and experiences of stigmatised treatment. The findings across these studies have however been difficult to reconcile. While a number of researchers reported that participants did not appear to be aware of their disability, others found that participants were aware of their disability and were sensitive to the stigmatised treatment they received from others as a result. The methods used by previous researchers have been largely verbal and it is suggested that such methods may have placed constraints on the abilities of people with intellectual disabilities to express themselves. Thus, the mixed findings may in part be accounted for by the reliance on verbally based methods of enquiry.

As a result of the previous research having been carried out with adults, little is known about the perceptions children with intellectual disabilities have of their disability or their awareness of social stigma. It is important to know about children's perceptions because early self-perceptions may have an enduring impact on a young person's mental well-being. Further, gaining insight into how the self-perceptions of children with intellectual disabilities develop during childhood may help to inform interventions designed to target the development of positive self-perceptions in children with intellectual disabilities.

This thesis will focus on children with Down syndrome. Down syndrome is a chromosomal disorder and one of the most common causes of intellectual disability (Carr, 1995). People with Down syndrome have distinctive facial features, which make them immediately identifiable to others and may mean that people with Down syndrome identify themselves as different from others.

The key questions addressed by the present research are: Are children with Down syndrome aware of Down syndrome and do they hold particular feelings about it? The present study was conceptualised as an exploration of children's rudimentary awareness of their disability and the social stigma attached to it. In order to explore children's perceptions, a mixed method approach was chosen.

The quantitative component of the study developed pictorial methods to investigate the awareness and views children with Down syndrome hold of Down syndrome. Children completed three experimental 'tasks' that involved colour illustrations and photographs of unfamiliar children, some of which depicted children with Down syndrome and some in which children had no visible disability.

Twenty-eight children with Down syndrome took part. There were two age groups; a younger group aged 8 to 12 years old (n= 10) and an older group aged 13 to 17 years old (n=18). The purpose of the two age groups was to explore potential differences in awareness shown by participants with different amounts of social experience. A comparison group of children with no disability allowed the researcher to investigate whether having Down syndrome led to differences in task performance. However, since children with Down syndrome have at least some degree of intellectual impairment, it was necessary to control for cognitive development and age separately. A cognitive ability control group enabled the researcher to ensure, as far as possible, that any differences in task performance that did occur could not be attributed to differences in participants' cognitive ability. The chronological age control group was used to help ensure that potential influence of social experience and learning, acquired with age, were also controlled for. Therefore, two groups of non-disabled participants were recruited; one group were the same chronological ages as participants with Down syndrome and the other were younger in chronological age, in the hope that their verbal ability would match that of participants with Down syndrome. However, despite their younger age, the non-disabled children scored consistently higher than participants with Down syndrome on the measure of verbal ability. Consequently, a verbal ability control group was unfortunately not achieved. Instead, the non-disabled participants were split into three age groups. The first group were younger in age and their verbal ability was closer to that of participants with Down syndrome (n=14). Although not matched on verbal ability, they were still at an earlier developmental stage and served a useful comparison group in this respect. The second group were aged 8 to 12 years old (n= 27) and the third group aged 13 to 17 years (n= 26). These groups served as chronological age-matched controls. The proportion of males and females in the Down syndrome and non-disabled groups were roughly equal.

For the qualitative phase of the study, the researcher interviewed a subsample of the children's mothers' to examine what they thought about their child's understanding of Down syndrome and the social stigma attached to it. Ten mothers of children with Down syndrome took part in 1:1 semi-structured interviews. The transcripts were analysed using Interpretative Phenomenological Analysis.

The responses of children with Down syndrome on the picture tasks indicated that they discriminated between the photographs of children with and without Down syndrome, they preferred to share social activities with the photographed children with no disability, they identified themselves as similar to the photographs of non-disabled children and they had less positive views about the photographed children with Down syndrome than those with no disability. Participants with no disability also demonstrated a similar bias in favour of non-disabled children during the tasks. Both participants with Down syndrome and non-disabled participants had positive views of themselves, although those with Down syndrome were slightly less positive about themselves than their non-disabled peers. The key finding from the experimental studies was the bias shown by all children in favour of photographs of children with no disability.

A contrasting picture emerged from the interviews with mothers. They expressed deep concerns regarding their child's growing distance from non-disabled peers as they grew older. Nevertheless, the mothers believed their children were oblivious to their disability or, at most, were aware of it but viewed it as inconsequential. Mothers reported waiting for their child to take the lead with regards discussing Down syndrome but most reported that their children rarely asked questions related to their disability and, as a result, it was rarely a topic of conversation. A sense of responsibility to talk to their children about their disability was accompanied by deep anxiety over what was best for their children regarding when and how to tell them about Down syndrome.

This research has highlighted that children with Down syndrome may be more aware of their disability and how Down syndrome is viewed socially than has been appreciated. It underscores the importance of giving children with communication difficulties a way of expressing their views. Future research should investigate the development of children's self-perceptions in relation to disability and inform ways of investigating children's growing awareness disability and related social attitudes. Such research could have an important role to play in fostering more positive ways of thinking about Down syndrome and equip them to deal with social stigma.

Item Type: Thesis (PhD)
Qualification Level: Doctoral
Keywords: children, young people, Down syndrome, self-perception, stigma
Subjects: B Philosophy. Psychology. Religion > BF Psychology
Colleges/Schools: College of Medical Veterinary and Life Sciences > School of Health & Wellbeing > Mental Health and Wellbeing
Supervisor's Name: Jahoda, Professor Andrew
Date of Award: 2014
Depositing User: Miss Karen A Deakin
Unique ID: glathesis:2014-5700
Copyright: Copyright of this thesis is held by the author.
Date Deposited: 06 Nov 2014 10:06
Last Modified: 06 Nov 2014 10:08

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