Search results for ‘Subject term:"downs syndrome"’ Sort:
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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.
Attitudes to Down's Syndrome: an investigation of attitudes to mental handicap in urban and rural Yorkshire
- Author:
- SINSON Jamie C
- Publisher:
- Mental Health Foundation
- Publication year:
- 1985
- Pagination:
- 52p., tables, diags, bibliog.
- Place of publication:
- London
The perception of friendship in adults with Down syndrome
- Authors:
- WATT K. J., JOHNSON P., VIRIJ-BABUL N.
- Journal article citation:
- Journal of Intellectual Disability Research, 54(11), November 2010, pp.1015-1023.
- Publisher:
- Wiley
The authors test their hypothesis that individuals with Downs syndrome (DS) have specific perceptual deficits that influence the interpretation of social interactions and, consequently, the understanding of friendship behaviours in a manner that differs from individuals with typical development. While studies have investigated friendship in children with DS, few have considered how adults with DS view the concept of friendship. This Canadian study evaluated the perception of friendship in adults with DS using a visually based scale. Sixty-six individuals participated: 22 adults with DS (aged 20.4-36.4 years with a mental age between 4-11.3 years), 22 typical mental age (MA) matched children and 22 typical adults matched for chronological age (CA). The Friendship Scale consisted of photographs depicting social interactions. It was composed of two parts: participants were shown two photographs and asked to select the photograph that best depicted friends and then asked to view one photograph and asked, ‘Is it okay for friends to do this?’. Adults with DS scored lower on the Friendship Scale compared with both matched groups. They made more errors in identifying ‘friends’ from ‘non-friends’ but were equally able to distinguish friendly behaviours and actions from non-friendly behaviours as were the comparator groups. Individuals with DS were more likely to incorrectly identify photographs depicting a teacher, or a mother with a child as friends. Actions or behaviours that depicted subtle negative emotions were also incorrectly identified.
‘I will never be old’: adults with Down syndrome and their parents talk about ageing-related challenges
- Authors:
- FINKELSTEIN Adi, TENENBAUM Ariel, BACHNER Yaacov G.
- Journal article citation:
- Ageing and Society, 40(8), 2020, pp.1788-1807.
- Publisher:
- Cambridge University Press
The life expectancy of people with Down syndrome (DS) has increased significantly over the last few decades. Consequently, they and their families face new ageing-related challenges, the first signs of which appear in people with DS around the age of 30. The goal of this study was to explore the perceptions of adults with DS regarding their own and their parents’ ageing and end of life, and to examine the views and concerns of the parents regarding the ageing of their children with DS. The unique approach used in this study was to convene not only the ageing people with DS but also their parents, to discuss the subject together. A total of 33 people with DS participated in the study. Most of them were interviewed with one or two parents. Participants with DS found it difficult to talk about their own old age and addressed the issue mainly through the decline in the functioning of an older person they knew. The parents emphasised the changes needed in terms of the official regulations, so as to ensure that their children with DS age with dignity and quality of life. The study identifies the increasingly pressing need to prepare adults with DS for their own and their parents’ ageing and end of life in a timely manner. (Edited publisher abstract)
Adaptation and resilience in families of individuals with down syndrome living in Ireland
- Authors:
- CAPLES Maria, et al
- Journal article citation:
- British Journal of Learning Disabilities, 46(3), 2018, pp.146-154.
- Publisher:
- Wiley
Background: The aim of this study, which is guided by the Resiliency Model of Stress, Adjustment and Adaptation was to examine linkages between family demands, family appraisal, family resources, family problem‐solving communication and family adaptation in families of individuals with Down syndrome living in Ireland. Methods: Ninety‐five parents (79 mothers, 16 fathers) of children with Down syndrome aged between 1 and 30 years completed six self‐report measures designed to assess key dimensions of the Resiliency Model of Family Stress, Adjustment and Adaptation. Results: This study found that families of children with Down syndrome can adapt and become resilient. Factors found to positively influence this process include family hardiness and affirming family communication. Factors that negatively influenced this process were incendiary family communication and view of the condition impact. Conclusion: Families of children with Down syndrome have the potential to lead full and productive lives and positively adapt to their child’s diagnosis. Early recognition of the difficulties being experienced by families and the provision of interventions that target and foster positive resiliency traits such as affirmative communication and the development of overall family hardiness are key to adaptation. (Publisher abstract)
Physical activity engagement in young people with Down Syndrome: investigating parental beliefs
- Authors:
- ALESI Marianna, PEPI Annamaria
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(1), 2017, pp.71-83.
- Publisher:
- Wiley
Background: Despite the wide documentation of the physical/psychological benefits derived from regular physical activity (PA), high levels of inactivity are reported among people with Down syndrome. This study aims to explore parental beliefs concerning involvement, facilitators/barriers and benefits of PA in young people. Method: Semi-structured interviews were conducted with 13 parents of young people with Down syndrome. Results: Three facilitation themes were identified: (i) the support derived from family; (ii) the availability of APA (Adapted Physical Activity) expert instructors and coaches; (iii) the challenging nature of sport activities. Three barrier themes were identified: (i) the lack of APA expert coaches and specialized gyms; (ii) the characteristics of Down syndrome; and (iii) the parental beliefs and worries. Conclusions: Family plays a key role, as facilitator and barrier, to the participation of their children with Down syndrome in PA. Crucial is the implementation of evidence-based exercise programmes involving people with Down syndrome and their families. (Publisher abstract)
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)
Staff views of a music therapy group for people with intellectual disabilities and dementia: a pilot study
- Authors:
- BEVINS Shelley, et al
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 9(1), 2015, pp.40-48.
- Publisher:
- Emerald
Purpose: Despite the longstanding use of music therapy with people with intellectual disabilities and the growing evidence base for using music therapy as a tool to aid behavioural and psychological symptoms of dementia in the general population, there is little work published which details the use of music therapy groups for people with intellectual disabilities who have a diagnosis of dementia. The purpose of this paper is to report a qualitative evaluation of staff views of a music therapy group for people with intellectual disabilities and dementia. Design/methodology/approach: Carers of service users attending the group were interviewed either individually or through a focus group in order to ascertain their views about the music therapy group. The interview transcripts were then analysed using thematic analysis. Findings: Two core themes and eight sub themes emerged from the data. These themes show that the group was felt to be pleasurable and enjoyable for the service users and that some tangible benefits of attending the group were observed by staff members. Notwithstanding the positive feedback, the results also suggested that more work is needed to inform carers of the goals and purpose of such groups. Further psycho-education for carers is suggested as a strategy to support future groups to run successfully. Originality/value: There is little published research into the use of music therapy for people with intellectual disabilities who also have dementia. The current paper provides a starting point for future work in the area and further recommendations for future practice and research are considered. (Publisher abstract)
Supported housing for people with Down's syndrome
- Authors:
- CUMELLA Stuart, HESLAM Sheila
- Journal article citation:
- British Journal of Learning Disabilities, 42(4), 2014, pp.251-256.
- Publisher:
- Wiley
There has been limited research on the attitudes of family carers and the part they play in helping people with a learning disability choose accommodation. A postal questionnaire was sent to family carers of people with Down's Syndrome, to identify their attitudes to supported living, their experience of the application process, and the support they provided to residents. It was found that main family carers of people with Down's Syndrome in supported living were generally satisfied with the housing and support provided, particularly with respect to activities of daily living. There was less satisfaction with the help received with managing finance and employment. There had been a mean of 2 years delay between application and securing accommodation. The large number of people providing care at home who wished their family-member to move into supported living suggests that there is a large unmet need for this type of accommodation. Almost all family carers continued to provide support after participants moved into supported living, particularly with more complex tasks such as financial management, and with responding to crises and ill-health. This indicates that people with a learning disability in supported living who do not have active contact with their family may be vulnerable financially and less likely than others to receive help at times of crisis. The proportion of residents in supported living who experience such problems will increase as family carers die or otherwise become too infirm to continue to provide support. (Publisher abstract)
'What's the next stage?' Mothers of young adults with Down syndrome explore the path to independence: a qualitative investigation
- Authors:
- DOCHERTY Julie, REID Kate
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 22(5), September 2009, pp.458-467.
- Publisher:
- Wiley
The values and beliefs of eight mothers of young adults with Down syndrome who are currently involved in supporting their offspring in the possible transition from dependence to independence are explored. The mothers, all living in Scotland, were interviewed and the results were thematically analysed using the qualitative approach, Interpretative Phenomenological Analysis (IPA). The mothers described themselves as having a dynamic role as both gate-keepers and facilitators in aiding their offspring on the path to adulthood. These findings are not consistent with findings of previous research, which suggested that mothers in this situation are personally and socially inclined to limit the transition of their offspring to an independent adulthood. The discussion explores the possible reasons for this change and proposes clarification to existing theoretical frameworks for understanding mothers' perspectives.