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Understandings of Down's syndrome: A Q methodological investigation
- Authors:
- BRYANT Louise D., GREEN Josephine M., HEWISON Jenny
- Journal article citation:
- Social Science and Medicine, 63(6), September 2006, pp.1188-1200.
- Publisher:
- Elsevier
Down's syndrome has been, and continues to be, a central focus of prenatal testing technology. However, there has been surprisingly little examination of how parental understandings of the condition relate to prenatal testing choices. This study, carried out at the University of Leeds, uses Q methodology to identify ‘competing equivalent stories’ of Down's syndrome and to highlight the shared and distinct themes within these stories. Seventy-six people were selected as being likely to represent a diverse range of views about Down's syndrome, approximately half of whom had some known experience or expertise related either to the condition or to prenatal testing. The participants were asked to Q sort 50 propositions about Down's syndrome that were selected to reflect different views about the condition in terms of its impact on the affected person, on families with an affected child, and on society. Using Principal Components Analysis, five statistically independent factors were extracted that reflected a range of views towards, and experiences of, people with Down's syndrome. Despite a virtual consensus about the rights of existing people with Down's syndrome to healthcare, an education, and inclusion in their community, there were significant differences in how participants believed they personally would adjust to an affected child. Furthermore, whether or not people with Down's syndrome were seen to be within ‘a continuum of normality’ sheds light on how views about the condition may be linked to views about prenatal testing and termination of pregnancy. The study demonstrates that people hold complex and sometimes seemingly contradictory views about Down's syndrome, and that these are likely to influence their prenatal testing decisions. Antenatal settings currently provide little opportunity for people to discuss and explore their beliefs about disability. It is argued that this may affect the ability of some individuals to make decisions that are informed by their own views and values.
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)
Social competence in persons with Prader-Willi, Williams and Down's Syndromes
- Authors:
- RISNER Beth A., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 17(3), September 2004, pp.209-217.
- Publisher:
- Wiley
This study explores everyday social competence in the lives of persons with three genetic intellectual disability syndromes. Using parent reports on the Social and Activity Competence domains of Achenbach's Child Behavior Checklist (CBCL), socially competent behaviours were examined in 58 persons with Williams syndrome, 54 persons with Prader-Willi syndrome, and 65 persons with Down's syndrome. The Down's syndrome group showed the highest overall social competence scores, while individuals with Prader-Willi syndrome fared worst in terms of their behaviour with others. The Williams syndrome group scored lowest in terms of skill with jobs and chores, and the Down's syndrome group showed the least skill in non-sport activities. Regarding specific activities, musical activities were popular in both Williams syndrome and Down's syndrome, but more participants with Williams syndrome played musical instruments. Compared with the other groups, individuals with Prader-Willi syndrome were five to 25 times more likely to play with jigsaw puzzles, and those with Williams syndrome were least likely to engage in any visual–spatial leisure activities. Age was found to be a positive correlate of social competence for the Williams and Down's syndrome groups, but not for the Prader-Willi group. Implications are discussed for interventions and for future behavioural phenotype work
The Multidimensional Observation Scale for Elderly Subjects (MOSES): studies in adults with intellectual disability
- Authors:
- DALTON Arthur J., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 27(4), December 2002, pp.310-324.
- Publisher:
- Taylor and Francis
Describes the results of five studies aimed at evaluating the usefulness, reliability, and validity of the Multidimensional Observation Scale for Elderly Subjects (MOSES) in the assessment of change in ageing persons with intellectual disability. Three hundred and thirty-six individuals with an average age of 49.8 years, including an equal number of men and women, were participants in one or more of the five studies. There were 220 participants with Down syndrome, 81 persons without Down syndrome with intellectual disability, and 35 persons from the general ageing population who were clinically diagnosed with Alzheimer's disease. Results concluded that the MOSES is a behavioural observation scale that can provide useful information in clinical settings as well as in research.
Development of an instrument for early detection of dementia in people with Down syndrome
- Authors:
- JOHANSSON Per Erik, TERENIUS Olle
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 27(4), December 2002, pp.325-345.
- Publisher:
- Taylor and Francis
The successful detection of early signs of dementia in people with Down syndrome could form a basis for useful early support and for drug treatment. This report describes the development and preliminary application of an interview and test instrument for the assessment of dementia among people with intellectual disability, as well as a framework for diagnosis. Reported are the assumptions for the items used, descriptions of the process and items used, and the associations of test items with predicting the presence of dementia. The authors conclude that a protocol combining testing and interview has promise and potential for detecting early signs of dementia in this population and could prove feasible for use in practice.
Descriptive functional analysis of behavioral excesses shown by adults with Down syndrome and dementia
- Authors:
- MILLICHAP David, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 18(9), September 2003, pp.844-854.
- Publisher:
- Wiley
The study examined the hypothesis that a functional relationship exists between social environmental events and behavioural excesses in individuals with Down syndrome and dementia. A case-series design was employed (n = 4) using an direct observation-based descriptive functional assessment procedure. Observations were conducted in the natural environments of four participants over periods ranging from 11 to 15.4 hours. Data were collected on non-verbal and verbal behavioural excesses, appropriate engagement and verbal interaction with others. Social environmental events observed including both staff and peer behaviour. Analysis of co-occurrence for behavioral excesses and social environmental events indicated significant relationships for some behaviours consistent with operant reinforcement processes. Sequential analysis showed that changes in the probability of social contact occurred in the period directly preceding and following verbal behaviours. Results support the hypothesis that, consistent with literature for older adults with dementia in the general population, some behavioral excesses were functional in nature and not randomly occurring events. No relationship was found between appropriate engagement and staff contact. Evidence of the functional nature of target behavioral excesses indicates that behavioural interventions have potential for this client group.