Search results for ‘Subject term:"downs syndrome"’ Sort:
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The effect of diagnostic label on care staff's perceptions of cause of challenging behaviour in individuals with learning disabilities
- Authors:
- GIFFORD Clive, KNOTT Fiona
- Journal article citation:
- British Journal of Learning Disabilities, 44 (4), 2016, pp.322-328.
- Publisher:
- Wiley
Background: This study investigated whether care staff's causal attributions and emotional reactions to the challenging behaviour displayed by service users were influenced by the service user's diagnostic label. Materials and Method: One hundred and twenty care staff were randomly allocated to one of three conditions. Participants viewed a video of a senior staff member describing a service user, varying only in diagnostic label (autism, learning disability or Down syndrome). Participants then rated their endorsement of possible causes and emotional reactions to challenging behaviour. Results: Participants in the autism and Down syndrome groups made more use of biomedical causes and less use of learned behaviour as an explanation for challenging behaviour than those in the learning disabilities group. Those in the former groups reported more positive and fewer negative emotions than those in the learning disabilities group. Conclusions: The way staff viewed people with learning disabilities was affected by their diagnostic label. Implications for further research and training have been discussed. (Edited publisher abstract)
Understanding maternal support for autonomy in young children with Down syndrome
- Authors:
- GILMORE Linda, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(2), 2016, pp.92-101.
- Publisher:
- Wiley
Prior research has highlighted the importance of supporting the autonomy of children with Down syndrome from early childhood. There is some evidence to suggest that mothers of children with Down syndrome are more directive than those whose children are developing typically. However, the factors that contribute to maternal autonomy supportive vs. directive behaviours are not well understood. The current study aimed to explore the value and importance that mothers place upon their child's autonomy, as well as the specific factors that influence the support they provide. Interviews were conducted with 14 mothers of young children with Down syndrome. It was revealed that mothers held aspirations for their children's future that included autonomy and independence; however, their capacity to promote autonomy was sometimes constrained by a range of child and family factors, as well as by their focus on developing skills for independent functioning. Understanding the factors that may constrain support for autonomy represents an essential step in the process of designing interventions for promoting maternal support for autonomy in families of children with Down syndrome and other developmental disabilities. (Edited publisher abstract)
The assessment of executive functioning in people with intellectual disabilities: an exploratory analysis
- Authors:
- BEVINS Shelley, HURSE Emily
- Journal article citation:
- British Journal of Learning Disabilities, 44(2), 2016, pp.87-94.
- Publisher:
- Wiley
The following article details a piece of service development work undertaken as part of the Plymouth Down Syndrome Screening Programme. The work aimed to review the use of three measures assessing executive functioning skills used within the Programme as well as with people without Down syndrome. Three tasks assessing executive functioning (the Weigl, Cats and Dogs, and verbal fluency task) were evaluated. The Weigl task was removed from the Programme and analyses due to floor effects and difficulties in administration. Correlation analyses showed relationships between the Cats and Dogs task and two other measures, cognitive skills as reported by carers and object memory. No relationships were found between the verbal fluency task and other measures. A full consideration is given to these findings, and implications for future practice are considered. Further data are needed to make full conclusions about the value of the tasks in predicting dementia in people with intellectual disabilities and people with Down syndrome. Further recommendations concerning the development of the assessment of executive skills are also considered. (Publisher abstract)
Will general practitioners be adequately prepared to meet the complexities of enhanced dementia screening for people with learning disabilities and Down syndrome: key considerations
- Author:
- ROWE Michelle
- Journal article citation:
- British Journal of Learning Disabilities, 44(1), 2016, pp.43-48.
- Publisher:
- Wiley
This article provides a timely response in regard to the Department of Health's current initiative to financially reward GPs to prioritise and undertake dementia screening for people with learning disabilities over the age of 50 years and for people with Down syndrome over the age of 40 years. Whilst GPs are becoming increasingly aware of their responsibility to care for the complex needs of people with learning disabilities, the implementation of dementia screening poses a multitude of challenges. Research has continued to suggest how difficult it is to detect the early and often ambiguous signs of dementia for someone who has pre-existing cognitive impairments and may present with atypical symptomology. And it continues to be a difficult process even for those who specialise within this area. However, GPs who choose to opt into this financially incentivised scheme will now be offering dementia screening. This article outlines the main GP aims within the dementia screening process and the difficulties that may be encountered, with specific focus upon: offering a dementia screen; obtaining consent; undertaking screening within the most appropriate setting; choosing a dementia screening tool and developing a baseline; detecting early dementia signs. (Edited publisher abstract)
Investigating the lived experience of people with Down syndrome with dementia: overcoming methodological and ethical challenges
- Author:
- WATCHMAN Karen
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(2), 2016, p.190–198.
- Publisher:
- Wiley
Adults with Down syndrome are at increased risk of dementia at a significantly younger age and remain under-represented as participants in dementia-related research. Because little is known about their personal experiences either immediately postdiagnosis or as dementia progresses, there is little opportunity that shared individual experiences can shape future policy and practice. To remedy this omission, the author examined methodological and ethical challenges identified as part of a research study that included people with Down syndrome affected by dementia. It has been contended that traditional qualitative approaches are less effective when participants are affected by changing cognitive functioning and reduced verbal communication. To counteract this contention overt participant observation and an adapted narrative research method were used as part of a three-year longitudinal study to help better understand the lived experiences of three adults with Down syndrome affected by dementia. Methodological and ethical challenges were shown to collide, and factors contributing to this effect included identifying process consent, accurate representation of participants, the role of and relationship with the researcher, participants, lack of awareness of their diagnosis of dementia, and need to recognize the importance of social interaction while maintaining academic rigor. Reflections are proffered on two conceptual and practice issues, with a call for both to be recognised and addressed in terms of future policy and practice. First is a lack of awareness of a sense of “self” or identity, resulting in individuals with Down syndrome and dementia being defined by their situation rather than individual preference or need. Second is the lack of information postdiagnosis about dementia being shared with people who have Down syndrome. (Publisher abstract)
Development of self-help, language, and academic skills in persons with Down syndrome
- Authors:
- DE GRAAF Gert, DE GRAAF Erik
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(2), 2016, p.120–131.
- Publisher:
- Wiley
Using visual analysis by means of scatterplots, correlational analysis, and linear regressions, the authors explored the skills of individuals with Down syndrome in the areas of self-help, language, academics, and computer skills. By combining data of several Dutch studies, they obtained 1,252 different observations made by parents on 862 individuals, aged <1–35 years. Research shows advancement in language skills up to the age of 12, with plateauing afterward. In contrast, self-help skills still increase in adolescence and young adulthood. Academics and computer skills improve up to the age of 14. However, less developed academic skills (and computer skills) of adolescents and young adults appear to be a generational difference, rather than a loss of acquired skills. In their analysis, the authors differentiated between students with a primarily regular school career vs. those with a primarily special school career. In addition, in both groups, the studies were differentiated between students with an IQ >50 vs. an IQ between 35 and 50. The comparison between the various subgroups revealed that children with special education backgrounds in the higher IQ range demonstrated less advanced academic skills than children with regular education backgrounds in the lower IQ range. This suggests that regular education is more stimulating for academic skill development. Using age, “school career,” and IQ (<35; 35–50; 50–60; 60–70; >70) as predictors, regressions confirmed this conclusion. The authors conclude that their analyses show that the shift in the early 1990s in the Netherlands toward more inclusion in education for students with Down syndrome has led to better outcomes in academic skill development for these students. (Publisher abstract)
Comprehension of pictograms for pain quality and pain affect in adults with Down syndrome
- Authors:
- DE KNEGT Nanda C., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(3), 2016, pp.222-232.
- Publisher:
- Taylor and Francis
Background: Adults with Down syndrome (DS) are at risk for age-related painful physical conditions, but also for under-reporting pain. Pictograms may facilitate self-report of pain, because they seem suitable for the global visual processing in DS and for iconic representation of abstract concepts. Method: Participants (N = 39, M age = 41.2) assigned pain qualities to pictograms, rated pain affect levels in facial scales (pictograms vs. drawn faces), and performed cognitive tests. Results: Recognition of all intended pain qualities was above chance level. Pain affect levels of both facial scales were ordered equally well. Both facial scales were preferred equally well. Comprehension of the 3 scales was positively associated with mental age, receptive language ability, and verbal memory. Most participants (74%) had pictograms in their direct environment, mainly to communicate activities or objects. Conclusion: Using pictograms may optimise communication about pain for a subgroup of cognitively higher functioning adults with DS. (Edited publisher abstract)
Family caregiving of aging adults with Down syndrome
- Authors:
- HODAPP Robert M., et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(2), 2016, p.181–189.
- Publisher:
- Wiley
Although persons with Down syndrome now live to approximately 60 years, the implications of increased longevity on family caregiving have received inadequate attention. Even compared with adults with other types of intellectual disabilities, by their late 40s and 50s adults with Down syndrome often show multiple health problems, cognitive-adaptive declines, and changes in daily work and activities. If alive, their parents are more often elderly, as mothers give birth to newborns with Down syndrome at a median age of 32 years (with high percentages age 40 and older). In addition, higher percentages of adults with (vs. without) Down syndrome live in their family homes and greater percentages may ultimately reside with siblings. Compared with caring for other adults with intellectual disabilities, ageing adults with Down syndrome may present earlier—and possibly more severe and more health-related—caregiving challenges to their parents and siblings. As a field and as a society, the authors note that there is a need to promote revisions of family support policies and interventions; recognise the inter-relations of aeging-related changes and their effects; and anticipate how aeging-related changes in the brother–sister with Down syndrome and the parent(s) might affect sibling caregivers. (Edited publisher abstract)
Parental stress, coping strategies and social support in families of children with a disability
- Authors:
- CUZZOCREA Francesca, et al
- Journal article citation:
- Child Care in Practice, 22(1), 2016, pp.3-19.
- Publisher:
- Taylor and Francis
The aim of this research was to compare parental stress, coping strategies and social support perceived in families of children with low functioning autism (n = 8), high functioning autism (n = 10), Down syndrome (n = 12) and parents of typically developing children (n = 20). Specifically, the objective was to investigate which variables (coping strategies and perception of social support available) might better predict different stress outcomes in the four groups. Parents were asked to fill in three questionnaires: Parent Stress Index, Coping Orientation to Problems Experienced and Social Support Questionnaire. Significant differences among groups in all of the variables considered were found. These results suggest the advisability of fostering functional coping strategies and social support received in families of children with disabilities, and especially in those with children with low functioning autism. (Publisher abstract)