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Menstrual profile and early menopause in women with Down syndrome aged 26–40 years
- Authors:
- EJSKJAER Kirsten, ULDBJERG Niels, GOLDSTEIN Henri
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 31(3), September 2006, pp.166-171.
- Publisher:
- Taylor and Francis
It is known that women with Down syndrome can be fertile, but it is not known whether all women with Down syndrome are fertile or sub-fertile. The age at menopause for women with Down syndrome is lower compared to women without Down syndrome. A cross sectional study of 11 women was undertaken, in which the participating women had a blood sample taken and were also examined using transabdominal ultrasound scanning (ULS). Definite signs of ovulation were evident in 2 women; hormone values in 5 women showed that they were in the luteal phase of the menstrual cycle; 1 woman was anovulatory; and in 1 woman it was not possible to judge the time of the menstrual cycle. Two of the women were postmenopausal according to medical information, ultrasound examination and hormone values. Safe contraceptives should be considered and offered if women with Down syndrome are engaging in sexual relations. Early menopause (before the age of 40 years) and the possibility of hormonal replacement therapy should be kept in mind.
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.
Successful experience of people with Down syndrome
- Authors:
- LI Eria Ping-Ying, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 10(2), June 2006, pp.143-154.
- Publisher:
- Sage
- Place of publication:
- London
The aim of this study was to investigate the successful experiences of people with Down syndrome to provide insights into the potential of people with intellectual disabilities. A qualitative approach was adopted, and 10 recipients of the Stevie Award for Outstanding Persons with Down syndrome were interviewed. Interviews with the participants' parents and other significant persons were also conducted. Content analysis and constant comparative method were adopted for data analysis. All 10 participants achieved in life when they demonstrated the motivation and perseverance to try new things and active involvement in extra-curricular activities and volunteer service. Role modeling and support from parents and teachers helped participants to develop talents in sports and arts. Effective family support and ongoing collaboration among family, school and community facilities are vital in enabling people with intellectual disabilities to develop their potential for a life of quality
Family quality of life when there is a child with a developmental disability
- Authors:
- BROWN Roy I., et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 3(4), December 2006, pp.238-245.
- Publisher:
- Wiley
The conceptualization of individual quality of life is reasonably well established, and now family quality of life and intellectual disability is emerging as an important field of study. This article examines comparative family quality of life in three types of families in Canada: those with a child who has Down syndrome, those with a child with autism, and those of similar household composition but without a child with a disability. Data were collected using the Family Quality of Life Survey, which was sent to participating families, and by interviews with selected families on a follow-up basis. Data from the 3 groups were analyzed in terms of quantitative and qualitative information. The needs and choices of families were contrasted in terms of the child's diagnosis. Findings showed that families' satisfaction and needs varied within the 9 quality of life domains assessed, raising questions of support and care and the ability of families to pursue desired goals. The authors suggest that there is a need to both identify and provide measures of care and support that would enable families to function at an optimum level within their home and community, so they may experience a quality life similar to that of families without a child with a disability.
Down syndrome: an introduction for parents and carers
- Author:
- CUNNINGHAM Cliff
- Publisher:
- Souvenir Press
- Publication year:
- 2006
- Pagination:
- 464p.
- Place of publication:
- London
- Edition:
- 3rd
Compares behaviours of a normal child and those of a Down's Syndrome child. Written to help parents understand the condition by explaining the medical details in lay terms, with photographs and diagrams showing the different characteristics and the vital chromosomes that create the syndrome.
From a genetic innovation to mass health programmes: the diffusion of Down's Syndrome prenatal screening and diagnostic techniques in France
- Author:
- VASSY Carine.
- Journal article citation:
- Social Science and Medicine, 63(8), October 2006, pp.2041-2051.
- Publisher:
- Elsevier
Down's Syndrome prenatal diagnostic and screening techniques have spread widely in France over the last 30 years and are now part of the routine clinical practice of prenatal care. These techniques, which originated in the field of genetics, ultrasonography and biochemistry, were the first to provide the possibility of choosing the features of the foetus, or at least to reject some of its characteristics. They lead to new norms of healthy foetuses and a progressive acceptance of medical abortions. The aim of this paper is to understand how the use of these tests has been generalised in France despite scientific controversies about their risks and ethical questioning about a potential renewal of eugenics. It analyses the representations of public needs that have been articulated by key players in the scientific and medical fields. This research explores political and administrative decision making processes to understand how progressively widening public access to prenatal testing has been organised and funded. The results highlight the scientific and political role of biomedical researchers, the forms of involvement of health authorities and politicians, and the passive participation of the vast majority of the users. The paper also examines the characteristics of the French health system that facilitated the generalised use of the technology.
Young people with Down syndrome: a preliminary investigation of health knowledge and associated behaviours
- Authors:
- JOBLING Anne, CUSKELLY Monica
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 31(4), December 2006, pp.210-218.
- Publisher:
- Taylor and Francis
Adults with intellectual disability have a range of significant health problems. If they are to live independently, they need to engage in behaviours that are health promoting, as well as avoiding behaviours that might directly lead to ill health. A group of 38 adolescents with Down syndrome (DS) and their families, all from the Down Syndrome Research Program (University of Queensland) participated in this study. A semi-structured interview and a series of tasks were used to collect data on individuals' health knowledge and behaviour relating to 4 aspects of health: hygiene, substance use, exercise and healthy eating. While the majority of young people demonstrated some awareness of basic hygiene, they were not yet at the level where these behaviours could be guaranteed to occur without parental support. Knowledge about substance use, exercise and healthy food was generally poor. Knowledge of most aspects of health assessed in this study was poor and pointed to a gap in the preparation of these young people for independent living.
The learn at play program (LAPP): merging family developmental research, early intervention, and policy goals for children with Down Syndrome
- Author:
- IAROCCI Grace
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 3(1), March 2006, pp.11-21.
- Publisher:
- Wiley
This article addresses the dynamics of parent–child interactions and their potential influence on the development of social competence among children with Down syndrome (DS). The authors argue that a strong parent–child relationship is fundamental for building the social competence of children with DS and the integration and inclusion of these children into their communities. The Learn at Play Program (LAPP), a model of early intervention that prioritizes the goals of nurturing and shaping the development of interpersonal skills and social competence among children with DS, is proffered. Discussed first is a brief overview of early intervention and the rationale for the need to focus on parent–child interactions and social competence when DS is present. The LAPP early intervention model for children with DS and their families is presented along with data from seven mother–child dyads assessed with the LAPP longitudinal study of parent–child interactions in DS to demonstrate the use of the model. The author's experiences with the LAPP program are also used to illustrate the utility of linking supportive networks (such as nonprofit organizations), academic and provincial government funding partnerships and public policy forums, and publicly funded organizations providing services to children with developmental delays from birth to 3 years old.
Family subtyping and early intervention
- Authors:
- MARGALIT Malka, AL-YAGON Michal, KLEITMAN Talia
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 3(1), March 2006, pp.33-41.
- Publisher:
- Wiley
The goal of the study was to identify and differentiate subgroups among mothers whose infants were diagnosed as having a developmental disability. The sample consisted of 80 mothers from intact families in Israel whose infants had such diagnoses, most of whom were diagnosed with Down syndrome. All mothers were receiving early intervention services. Acknowledging the mothers' heterogeneous reactions to their situation, the study attempted to identify discrete family profiles, based on mothers' sense of coherence as a measure of personal strength and family cohesion as a measure of systemic support. Four family subtypes were identified. The authors examined experiences of stress, coping, and affect among these subgroups. Significant differences emerged among these four subgroups in mothers' stress experience, as well as their negative and positive moods. Relations between mothers' strengths and their needs are discussed as related to the early intervention program.
Personality and behaviour changes mark the early stages of Alzheimer's disease in adults with Down's syndrome: findings from a prospective population-based study
- Authors:
- BALL Sarah L., et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 21(7), July 2006, pp.661-673.
- Publisher:
- Wiley
Research based on retrospective reports by carers suggests that the presentation of dementia in people with Down's syndrome may differ from that typical of Alzheimer's disease (AD) in the general population, with the earliest changes tending to be in personality or behaviour rather than in memory. This is the first long-term prospective study to test the hypothesis that such changes, which are more typical of dementia of frontal type (DFT) in the general population, mark the preclinical stage of AD in DS. A previously identified population sample of older people with DS, first assessed in 1994 and followed-up 18 months later, were reassessed after a further 5 years. This study focuses on the 55 individuals who took part in the second follow-up. Dementia diagnosis was made using the modified CAMDEX informant interview and neuropsychological assessment was undertaken using the CAMCOG. Progression in clinical presentation was examined and degree of cognitive decline over time (on the CAMCOG and derived measures of executive function (EF) and memory) was compared across groups based on diagnosis and age: AD, DFT, personality/behaviour changes insufficient for a diagnosis of DFT (PBC), no diagnosis <50 years and no diagnosis 50 + years. Progression was observed from early changes in personality and behaviour to an increase in characteristics associated with frontal lobe dysfunction and/or a deterioration in memory, prior to the development of full AD. Individuals who met criteria for DFT were significantly more likely to progress to a diagnosis of AD over the following 5 years than those who did not and those with PBC were significantly more likely to progress to a more severe diagnosis (DFT or AD) than those without. In the 5 years prior to diagnosis, participants with PBC and DFT had shown a degree of global cognitive decline intermediate between those with no dementia and those with AD. Both these groups had shown a significant decline in EF but not in memory, while the AD group had shown significant decline on both measures, with a significantly greater degree of decline in memory. Older participants without informant reported changes showed a more generalised pattern of decline. These findings confirm that the early presentation of AD in DS is characterized by prominent personality and behaviour changes, associated with executive dysfunction, providing support for the notion that the functions of the frontal lobes may be compromised early in the course of the disease in this population. This has important implications for the diagnosis, treatment and management of dementia in people with DS.