Cliff Cunningham

Maternal parenting stress and its correlates in families with a young child with cerebral palsy

OBJECTIVE To investigate factors predicting parenting stress in mothers of pre-school children with cerebral palsy. METHOD Eighty mothers and children participated. Mothers completed the Parenting Stress Index (PSI) and the following measures of family functioning: family support, family cohesion and adaptability, coping strategies, family needs and locus of control. Children were assessed using the Griffiths Scales and the Gross Motor Function measure. The childs home environment was assessed using Home Observation for Measuring the Environment. RESULTS Mothers had higher mean total PSI scores than the means for the typical sample; 43% had total PSI scores above the threshold for clinical assessment. Cluster analysis demonstrated five distinct clusters of families, more than half of whom were coping well. High stress items were role restriction, isolation and poor spouse support, and having a child who was perceived as less adaptable and more demanding. Lower stress items indicated that this sample of mothers found their children emotionally reinforcing and had close emotional bonds. Regression analysis showed that the factors most strongly related to parenting stress levels were high family needs, low family adaptability and cognitive impairment in the child. CONCLUSIONS The results confirmed the individuality of families, and that individual characteristics of coping and feeling in control, together with family support and cohesion, are associated with variation in amount of stress experienced in parenting a child with cerebral palsy.

Self‐awareness in Young Adults with Down Syndrome: I. Awareness of Down syndrome and disability

The limited literature on awareness of differences and stigma in people with intellectual disabilities is largely sociological, emphasises pathology, and has rarely used a developmental perspective with representative samples. Interviews, photographs and standardised tests were used to investigate such awareness with 77 young adults with Down syndrome and their parents. Awareness and social categorisation were significantly associated with verbal mental age, and closely approximated the typical social‐cognitive developmental sequence. No associations were found between awareness and chronological age, parent telling, gender, and mainstream experience. Only those with verbal mental ages from around 8 years were making relative social comparisons and beginning to form complex social categories of Down syndrome/disability. Around 13% were rated as showing a negative emotional reaction to Down syndrome/disability, and most of these were male. A similar percentage, mostly female and with higher verbal mental ages, discussed concerns and limitations. Even so, they all had high self‐esteem and awareness of Down syndrome and disability did not appear to be a major issue. A number of coping mechanisms to maintain a positive sense of self were suggested. It is argued that both sociological and developmental models are required to inform parent and professional attempts to facilitate self‐awareness.

Evaluation of Self by Young People with Down Syndrome

There have been relatively few studies of self-esteem with young people with moderate and severe intellectual disability. One reason for this is likely to be measurement difficulties. The purpose of the present study was to assess the usefulness of three measures of self-esteem in 72 young people with Down syndrome aged from 17 to 24 years. Forty-five young people, mean VMA 5 years 10 months, were assessed on the Pictorial Scale of Perceived Competence and Social Acceptance for Young Children and the Joseph PreSchool and Primary Self-Concept Screening Test. Nineteen young people, mean VMA 8 years 9 months, completed the Self-Perception Profile for Learning Disabled Students. Validity was assessed by reading scores and by interviews with the young people and their parents. Eight young people with the most severe intellectual disability could not do any test; the remainder were able to respond to the format of the appropriate tests. On all measures they rated themselves positively. Internal consistency estimates were high, but validity was only demonstrated for the Self-Perception Profile for Learning Disabled Students, supporting its use with the young people who had VMAs of around 7 years. Evaluation of self also showed a standard developmental trend.

Trends and outcomes in educational placements for children with Down syndrome

ABSTRACT This paper reviews selected British studies over the past 35 years with respect to: (a) the numbers of children with Down syndrome attending different types of preschool facilities and schools, and (b) any evidence for progress in the different types of school. It concludes that there has been a significant shift in attendance from schools for children with severe learning disability, to those for moderate learning disability, to mainstream. This is mainly associated with changes in attitude towards children with Down syndrome and local education authority (LEA) policy on integration. Within the support given at the time of the studies, estimates indicate that approx. 70‐80 per cent of children with Down syndrome could commence their educational careers in integrated or mainstream facilities, approx. 35‐40 per cent could be expected to complete their primary education in mainstream schools and approx. 20‐25 per cent in secondary mainstream schools. However, some LEA areas are reporting much highe...

What Do Babies Listen to Most? A Developmental Study of Auditory Preferences in Nonhandicapped Infants and Infants With Down's Syndrome

The auditory preferences of 10 infants with Downs syndrome and 10 nonhandicapped infants were studied at the developmental ages of around 9 months and 18 months. We used an apparatus that allows infants to choose to listen to one of a pair of auditory stimuli and that records their responses. At both ages, an infant had the choice of listening first to either a childrens rhyme or a repetitive tone, and second to either the mother talking to her own child (baby talk) or the mother talking to an adult. At both ages, both groups of infants significantly preferred to listen to the childrens rhyme and to the baby talk. At the developmental age of 9 months, both groups listened significantly more to nursery rhymes than to spoken stimuli; by 18 months, nonhandicapped infants showed a significant increase in listening to baby talk, which they then listened to longer than to rhymes. Infants with Downs syndrome showed a significant decrease in listening to baby talk at this age and still listened longer to rhymes. Implications for further research and intervention are discussed. Several studies have noted that expressive language is delayed in children with Downs syndrome and that there is a long plateau of little observable development between the first few words and the appearance of twoand three-word phrases. Rondal (1982) noted that meaningful speech does not appear before 24 months of age, at which time it is less than 5% of all utterances, and it increases only slowly up to 4 years of age. What is not clear is how these delays relate to the reception and comprehension of speech and what is the effective speech environment of the young child. Such information is required to inform intervention efforts with mentally handicapped children (Butterfield & Cairns, 1976).

Parents' Reports of Young People With Down Syndrome Talking Out Loud to Themselves

Despite parental concerns about young people with Down syndrome talking out loud to themselves (using private speech), there is virtually no research literature on this behavior. In that which exists, investigators have largely interpreted the behavior within a pathological framework. An alternative perspective is that self-talk is developmentally appropriate for these young people. Parents of 78 young people with Down syndrome, age 17 to 24 years, were asked whether their offspring had ever used private speech. Results confirm the universality of private speech and its developmental pattern. No association was found between private speech and behavior problems, communication difficulties, or social isolation. Talking out loud to self by young people with Down syndrome should be seen as adaptive, and not an indication of pathology.

Typical or Pathological? Routinized and Compulsive-Like Behaviors in Children and Young People With Down Syndrome

Routinized and compulsive-like behaviors (RCB) are common in typically developing children and in children and adults with Down syndrome, but what functions do they serve? Parents completed questionnaires for RCB, behavior problems, and adaptive behaviors. Children who had Down syndrome had significantly higher levels of RCB than did the typically developing children at all MAs; RCBs were positively associated with adaptive behaviors for younger MA and CA groups, but not older MA children and all adults with Down syndrome. For children with Down syndrome and MAs over 5 years and all adults, RCBs were associated with behavior problems. We concluded that RCBs support developmental progress for all children with MAs less than 5 years, but may have different functions for older individuals.

Comparison of the 1969 and 1993 standardizations of the Bayley Mental Scales of Infant Development for infants with Down syndrome

The Bayley Scales of Infant Development (BSID) were re-standardized in 1993 (BSID-II). The present study reports a comparison of the two versions with infants with Downs syndrome (DS). The BSID-II was used for 93 assessments of 54 children with DS (age range = 7-43 months). Comparisons were made with the 1969 standardization for 42 of these assessments, and for 45 assessments of 20 typically developing children aged between 6 and 24 months. The 1993 standardization produced significantly lower mean differences of 1.0 months mental age and 8.4 points mental development index for infants with DS, and 1.5 months mental age and 9.2 points mental development index for the typically developing group. Nineteen per cent more infants with DS had scores below two standard deviations and there was a larger decrement for lower functioning children. Both groups of children have to perform at a higher level to achieve the same relative score on BSID-II compared to BSID. This indicates that caution should be used in comparing cohorts of children tested on different versions of the Bayley scales. In addition, concerns are highlighted regarding the rules for establishing basal and ceiling levels for BSID-II for children with developmental delays.

A cross-sectional comparison of routinized and compulsive-like behaviours in typical children aged from 2 to 11 years

Routinized and compulsive like behaviours (RCBs) have been described as important aspects of development seen universally in children, yet investigation is relatively scarce. One exception was the development of the Childhood Routines Inventory (CRI), which has prompted recent studies. The present study was a replication of the standardization for the CRI on a British sample and with an extended age range. It also explored possible associations with obsessive-compulsive disorder (OCD). The parents of 1,369 children (aged 2–11 years) completed the CRI, and an 8-item OCD scale for those 7 years and over. Socioeconomic status (SES) was measured by proxy post codes; 111 parents completed the questionnaire twice. The CRI had good internal consistency and test–retest reliability. There was a significant linear decline in RCBs with age; a minority of children continued to have high levels up to 11 years of age. Children designated at risk for OCD had higher CRI scores. Anxious behaviours reported by parents of children aged 7 years or over were associated with higher levels of RCBs. Factor analysis of the CRI identified three factors: “Repetitive”, “Just Right” and “Sensitivity”.

Self‐awareness in Young Adults with Down Syndrome: II. Self‐understanding

This study explored the self‐understanding of 77 young people with Down syndrome aged from 17 to 24 years, with verbal mental ages ranging from less than 2 years 6 months to 12 years 4 months. The aim was to determine whether the self‐understanding of these young people followed a typical developmental pathway, whether they were making social comparisons to others, and if these comparisons were downward, upward or lateral. The data came from interviews with the young people and with their parents. Results confirmed the typical developmental progression in so far as relative comparisons to others were only made by those with significantly higher mental ages. These young people made more downward than upward comparisons, whereas parents largely referred to lateral comparisons. This again is similar to findings with people in general who tend to maintain their self‐esteem by making downward comparisons. Aspirations were age appropriate, albeit with relatively low levels of cognitive understanding. Reference groups predominantly consisted of families and other young people with intellectual disabilities.