Parental and family well-being in families of children with Down syndrome: a comparative study.

The purpose of this study was to examine the effects of a child with Down syndrome on the individual functioning of both parents, marital functioning, and family functioning. Thirty-four families of children with Down syndrome were compared to 41 families with nondisabled children. Mothers and fathers in both groups completed a series of self-report measures. No significant differences were obtained between the two groups of families on any of the measures of individual, marital, or family functioning. The results of this study support a competence model in which parents may respond to the challenges associated with parenting a child with Down syndrome with resilience and adaptive functioning.     

Resilience in families of children with Down syndrome in Korea

This study aims to identify the factors related to resilience of the families of children with Down syndrome (DS). Data were collected from 126 parents of children with DS in Korea, using a self‐administered questionnaire. The age of the child, developmental level of the child, parental depression, and stress and strain were negatively related with family adaptation, whereas health of parents, family cohesiveness, flexibility, communication skills, supportive family/relatives, and quality of community service were positively related. Parental depression, family cohesiveness and communication skills were the factors that were strongly related to family resilience and adaptation. It is suggested that nursing interventions to decrease parental depression and increase family cohesiveness and communication skills should be included to increase resilience of the families of children with DS.     

Experiences of mothers of children with Down syndrome

This qualitative study explored the experiences and lifestyles of families in Turkey with children with Down syndrome, including the impact on family members. Twelve mothers with a Down syndrome child (three from each of the age groups 1-3 years, 4-6 years, 7-12 years and 13-18 years of age) participated in the study. The data were collected during in-depth interviews and were evaluated using qualitative data analysis methods. Families were affected socially, physically, economically and emotionally by having a child with Down syndrome.     

Parental perceptions of sibling relationships in families rearing a child with a chronic condition

This study examined sibling relationships in families raising children with autism, Down syndrome, orthopedic conditions, and diabetes. Parents from 108 families independently completed the 28-item Schaefer Sibling Inventory of Behavior. Parents rated siblings as very empathetic, fairly often kind and involved, and rarely avoidant. Mothers rated sibling empathy higher than fathers did and older siblings more avoidant than younger siblings. Fathers rated male siblings kinder than female siblings; they also rated siblings of children with Down syndrome or autism more kind and involved than siblings of children with orthopedic conditions or diabetes. Sibling intervention efforts should consider these findings and be individualized according to the need of each child and family.     

Homocysteine and oxidative stress in Egyptian children with Down syndrome

ObjectiveTo assess homocysteine, folic acid and vitamin B₁₂, trace element levels and oxidant/antioxidant status in Down syndrome (DS) mothers and children.Design and methods42 mothers with previous history of bearing DS baby with karyotypically confirmed full trisomy 21 were included. 48 healthy mothers with their healthy children were considered as control. Serum B₁₂, folic acid, total homocysteine (tHcy), vitamins E and C, TBARS and trace elements were estimated.ResultsDS mothers showed higher levels of tHCy, lower levels of folic acid and vitamin B₁₂ than controls. tHCy and folic acid concentrations were significantly decreased, while vitamin B₁₂ exhibited a slight decrease in DS children versus control. Vitamins E and C, zinc and copper levels were markedly reduced in DS mothers. By contrast, TBARS showed significant elevation in them. Furthermore, DS children had severe reduction of vitamin C and zinc levels relative to healthy children. However, vitamin E showed slight reduction and TBARS displayed a slight rise in DS children.ConclusionAbnormal folic acid-homocysteine metabolism is a potent marker to identify women at risk for having DS child and it also exposes them to oxidant/antioxidant imbalance.     

The multi-directional reach test in children with Down syndrome

Objective:This study investigated the limits of stability (LOS) and the movement patterns during reaching by applying the Multi-Directional Reach Test (MDRT) in children with Down syndrome (DS) aged 7–12 years old.Methods:Thirty children with DS and 30 age and gender typical development (TD) matched children, aged 7–12 years old were recruited. Each child was asked to reach as far as possible during standing in four directions using a self-selected movement pattern. The movement patterns were classified by two experienced pediatric physical therapists.Results:The reach distance in children with DS aged 7–9 years old was significantly shorter than TD children aged 7–9 years old for the forward and backward directions. Also, the reach distance in DS children aged 7–9 years old was significantly smaller than that of TD children aged 10–12 years old for all directions. For children with DS aged 10–12 years old, the reach distance was significantly less than that of TD children only in the backward direction. All children with DS in this study adopt a hip and mixed strategy during forward and backward reaching. In contrast, TD children adopt an adult-like movement pattern.Conclusion:The boundary of stability in an anteroposterior (AP) direction of children with DS aged 7–12 years old was lesser than the matched TD children, especially for the backward direction. These findings may assist therapists in detecting postural control and balance problems in children with DS.     

The perceptions of Taiwanese families who have children with learning disability

Aims and objectives. To explore the perceptions of families in Taiwan of living with a child who have learning disability and the parents perspectives on the cultural influences on their spiritual experiences. Background. Traditionally, the family is the most important unit of society, family functioning is a key field of interest among helping professionals who provide family interventions. Design. This study adopted qualitative research with semi‐structured interviews. The study analysis used content analysis which was a process of identifying, coding and categorizing the themes in the data. Methods. Semi‐structured interviews were conducted with 117 parents in their homes and were interpreted by using content analysis to extract key conceptual themes from the transcribed interview texts. Results. The findings revealed that the perceptions of families with learning disability children were wide‐ranging. The stressors did not occur in a fixed order, they were different in degree and importance from one family to another. Conclusions. The results showed that the experience of analysing qualitative data was extremely valuable for parents in that it aided their own understanding of the real‐life experiences of the parents and in coming to know the parents in a richer, more meaningful way. In doing so, nurses need to be aware of their own thoughts and environment without letting it influence others. Relevance to clinical practice. The nurse should demonstrate knowledge and understanding of the family's culture and be able to show respect for cultural difference to assess and identify culturally acceptable health‐care interventions.     

Leisure participation for school-aged children with Down syndrome

Purpose.?To describe leisure participation for school-aged children with Down syndrome and to investigate how factors, classified by the World Health Organisation's International Classification of Functioning, Disability and Health, influence their leisure participation.

Method.?Families in Western Australia with a child aged 5–18 years with Down syndrome were surveyed in a population-based study (n == 208) in 2004.

Results.?One-third of parents reported that their child with Down syndrome had no friends although half reported two or more friends. Factors affecting number of friendships included the child's functional ability, behavioural issues and parent's availability of time. Those children with higher functional independence scores in daily tasks were more likely to have two or more friends than those with lower functional independence scores (OR: 1.02, 95%% CI 1.01–1.04 for a single point increase in WeeFIM score). All children participated in predominantly solitary and sedentary leisure activities.

Conclusions.?Leisure participation was affected by complex factors both within and external to the child with Down syndrome. Further investigation of the relevance of these factors to leisure may enable more satisfying and meaningful participation in leisure for school-aged children with Down syndrome.     

Safeguarding and promoting the well-being of children,families and communities

The Political Psyche Andrew Samuels London, Routledge, 1993 380 pp., Pb £14.99, Hb £40.00

Balancing Dreams and Discipline: the Manager in Practice Sally Irvine London, RCGP, 1992 137 pp., £13.50

Brief Counselling. A Practical Guide for Beginning Practitioners Windy Dryden &; Colin Feltham Buckingham, Open University Press, 1992 219 pp., Pb £11.99

Out of Bounds: Sexual Exploitation in Counselling and Therapy Janice Russell London, Sage Publications, 1993 176 pp., Pb £10.95, Hb £30.00

Death, Dying and Bereavement D. Dickenson &; M. Johnson London, Sage Publications, 1993 336 pp., Pb £12.95, Hb £35.00

Making the Right Decision: Ethics for Managers William D. Hall Chichester, John Wiley, 1993 248 pp., £10.95

Models for Mental Disorder: Conceptual Models in Psychiatry, 2nd edition Peter Tyrer &; Derek Steinberg John Wiley &; Sons, Chichester, 1993 142 pp., £9.95     

The profile of social functioning in children with Down syndrome

Background: Practitioners and researchers have asserted for decades that social functioning is a strength in children with Down syndrome (DS). Nevertheless, some studies have concluded that children with DS may be at greater risk of impaired social functioning compared to typically developing controls. This cross-sectional study explores the profile of social functioning (social capabilities and social problems) in six-year-old children with DS, compares it with that of typically developing children and reveals possible differences in predictors between groups.

Method: Parental reports and clinical tests were utilized.

Results: The children with DS had generally weaker social capabilities compared to nonverbal mental age-matched controls, but no significant differences were found for social interactive play, community functioning and prosocial behaviour. No significant differences in predictors for social capabilities between the groups were found. The children with DS had more social problems than the typically developing controls with a similar chronological age and those with a similar nonverbal mental age, but no significant differences in emotional symptoms were found between the children with DS and either comparison group. Vocabulary was a more important predictor of social problems in the children with DS than in the typically developing control groups.

Conclusion: Interventions for children with DS should strongly focus on integrating vocabulary skills and social functioning starting at an early age.

• Implications for Rehabilitation

• Children with Down syndrome need help and support in social functioning.

• Systematic training to optimize social capabilities and to prevent social problems should be prioritized.

• Structured and explicit learning of words important for social interaction with peers and for conflict solutions should be emphasized.

• Integrated interventions focusing on social functioning and vocabulary should begin in preschool to prepare children for participation in mainstream education.

     

Maternal serum invasive trophoblast antigen and first-trimester Down syndrome screening

BACKGROUND: In the United States, Down syndrome screening is still performed mainly in the second trimester, using 3 or 4 markers. Moving screening into the first trimester has the advantage of earlier diagnosis. Currently, first-trimester screening typically includes maternal serum pregnancy-associated plasma protein-A (PAPP-A), the free beta-subunit of human chorionic gonadotropin (free beta), and ultrasound measurement of nuchal translucency thickness (NT). The current report describes a case-control study of serum invasive trophoblast antigen (ITA) and its possible inclusion in first-trimester screening for Down syndrome. METHODS: As part of an earlier observational study, serum samples from 54 Down syndrome and 276 matched unaffected pregnancies were collected between 9 and 15 weeks of gestation. Samples had been aliquoted and stored at -20 degrees C for 8 years. ITA was measured and converted to weight-adjusted multiples of the median (MoM). The distributions of other first-trimester markers are from a single published study. RESULTS: Median ITA MoM in Down syndrome pregnancies increase as gestational age increases (2.02 MoM at 11 and 2.44 MoM at 13 completed weeks). At 75% detection, maternal age in combination with ITA and PAPP-A measurements have an 8.0% false-positive rate, slightly lower than the 8.8% found for the free beta and PAPP-A combination; adding NT measurements reduces false positives for the 2 combinations to 2.0% and 1.8%, respectively. CONCLUSION: Serum ITA appears to be a useful first-trimester Down syndrome marker that could replace free beta measurements while maintaining performance.     

Predictors of receptive and expressive vocabulary development in children with Down syndrome

Purpose: There is a lack of longitudinal data on predictors of vocabulary development in children with Down syndrome (DS). In typically developing children, many internal and external predictors of vocabulary development have been determined before. The purpose of the present study was to investigate the role of these variables in the receptive and expressive vocabulary development of children with DS.

Method: The present study used a longitudinal design in young children with DS to study the vocabulary development over a period of 1.6 years and investigated the possible predictive role of child-related and environmental variables.

Result: Receptive vocabulary development was best predicted by the adaptive level of functioning and early receptive vocabulary skills. Expressive vocabulary development was best predicted by the adaptive level of functioning, receptive vocabulary, maternal educational level, level of communicative intent of the child, attention skills and phonological/phonemic awareness.

Conclusion: A wide range of internal and external predictors for vocabulary development of children with DS was found. Predictors resemble those predicting vocabulary development in peers with typical development between 1 and 6 years of age, as identified in other studies.