WorldWideScience

Sample records for intellectual disability quality

  1. Understanding Quality of Working Life of Workers with Intellectual Disabilities

    Science.gov (United States)

    Flores, Noelia; Jenaro, Cristina; Orgaz, M. Begona; Martin, M. Victoria

    2011-01-01

    Background: This paper examines the perceived quality of working life of workers with intellectual disabilities. Specifically, this paper looks at participants' perceptions in relation to perceived job demands and resources and their impact on experienced job satisfaction. Methods: In this cross-sectional survey, 507 workers with intellectual…

  2. An Initial Evaluation of the Comprehensive Quality of Life Scale--Intellectual Disability.

    Science.gov (United States)

    Cummins, Robert A.; And Others

    1997-01-01

    A study of 59 Australian people with an intellectual disability and 69 university students evaluated a new scale to measure the life quality of people with an intellectual disability. The Comprehensive Quality of Life Scale--Intellectual Disability was found to be a useful instrument to measure comparative life quality. (Author/CR)

  3. Measuring quality in services for children with an intellectual disability.

    Science.gov (United States)

    Koornneef, Erik

    2006-01-01

    To evaluate the application of one particular quality measurement tool, the SERVQUAL instrument, as a potential mechanism to measure quality in services for children with disabilities Staff and family of children with an intellectual disability in two organisations providing specialist therapy and day completed an adapted SERVQUAL questionnaire. A total of 81 SERVQUAL questionnaires were distributed and 59 questionnaires were returned (response rate of 73 per cent). The SERVQUAL instrument can be considered as a useful diagnostic tool to identify particular strengths and areas for improvement in services for people with disabilities as the instrument lends itself for the monitoring of the effectiveness of quality improvement initiatives over time. The findings also showed relatively high customer expectations and the organisations involved in this research are currently not meeting all of these high expectations as significant quality gaps were found in the areas of reliability and responsiveness. The sample size was relatively small and the measurement of quality using the SERVQUAL instrument remains a challenge, due to the conceptual and empirical difficulties. The SERVQUAL instrument is probably most be attractive to service managers and funding organisations because of its ability to identify gaps in the quality of the service. The tool had been used to measure quality in services for people with disabilities and the research has shown that this tool might be an important additional quality measurement tool for services.

  4. Sibling Relationship Quality and Social Functioning of Children and Adolescents with Intellectual Disability

    Science.gov (United States)

    Floyd, Frank J.; Purcell, Susan E.; Richardson, Shana S.; Kupersmidt, Janis B.

    2009-01-01

    We examined sibling relationships for children and adolescents with intellectual disability and assessed implications for their social functioning. Targets (total N = 212) had either intellectual disability, a chronic illness/physical disability, or no disability. Nontarget siblings reported on relationship quality, sibling interactions were…

  5. Agreement in Quality of Life Assessment between Adolescents with Intellectual Disability and Their Parents

    Science.gov (United States)

    Golubovic, Spela; Skrbic, Renata

    2013-01-01

    Intellectual disability affects different aspects of functioning and quality of life, as well as the ability to independently assess the quality of life itself. The paper examines the agreement in the quality of life assessments made by adolescents with intellectual disability and their parents compared with assessments made by adolescents without…

  6. Quality of Life and Quality of Support for People with Severe Intellectual Disability and Complex Needs

    Science.gov (United States)

    Beadle-Brown, J.; Leigh, J.; Whelton, B.; Richardson, L.; Beecham, J.; Baumker, T.; Bradshaw, J.

    2016-01-01

    Background: People with severe and profound intellectual disabilities often spend substantial time isolated and disengaged. The nature and quality of the support appears to be important in determining quality of life. Methods: Structured observations and staff questionnaires were used to explore the quality of life and quality of support for 110…

  7. The Impact of Intellectual Disability, Caregiver Burden, Family Functioning, Marital Quality, and Sense of Coherence

    Science.gov (United States)

    Al-Krenawi, Alean; Graham, John R.; Al Gharaibeh, Fakir

    2011-01-01

    The present article is the first to consider the impact of intellectual disability on Bedouin-Arab families' caregiver burden, family functioning, marital quality, and sense of coherence. A random sample of 300 Bedouin-Arab parents with one or more intellectually disabled children, and a control group (n = 100) completed the McMaster Family…

  8. Intellectual disability

    Science.gov (United States)

    ... below average Development way below that of peers Intelligence quotient (IQ) score below 70 on a standardized ... Social. Nutrition programs can reduce disability associated with malnutrition. Early intervention in situations involving abuse and poverty ...

  9. Rare diseases and intellectual disability: assessment of quality of life of children and adolescents

    Directory of Open Access Journals (Sweden)

    Erica GONZÁLEZ MARTÍN

    2017-02-01

    Full Text Available Antecedents. The main objective of this study was to evaluate the quality of life in children and young people with rare diseases and intellectual disability, as well as to determine the incidence of certain predictors (i. e., gender, age, level of intellectual disability, type of school, type of illness and autonomous community in the criterion variable. Method. The KidsLife Scale was applied, a questionnaire based on the eight domain model of quality of life by Schalock and Verdugo. The sample comprised 103 participants with rare diseases and intellectual disability, aged between 3 and 21, who received supports in any organization providing educational, social, or health services. Results. The best scores were found in physical wellbeing, while the lowest were in social inclusion. The level of intellectual disability and support needs resulted in significant differences for the total score of the scale. Analyses by domains showed differences by gender, intellectual disability level, and type of schooling. Conclusions. The results argue for designing practices aimed to improve quality of life-related personal outcomes with regard to self-determination, inclusion, and interpersonal relationships.

  10. [Aging and quality of life: challenges and opportunities for people with intellectual disabilities].

    Science.gov (United States)

    Schäper, S; Graumann, S

    2012-10-01

    In the coming years, a growing number of people with an intellectual disability will reach retirement age. In line with the change of paradigms, the leading ideas of participation, inclusion and self-determination have become the principles of the ideological and conceptual framework in social services for people with disabilities. However, in many places convincing concepts and arrangements of support for elderly people with intellectual disabilities are lacking, particularly beyond institutionalized concepts. The research project "Lebensqualität inklusiv(e)" (quality of life included) tries to bridge this gap. On the base of an estimation of the demographic development for this group of people, models of best practice have been documented and evaluated focusing on living conditions and the special requirements for elderly people with intellectual disabilities in order to gather ideas for the development of arrangements of support. The results show that an interdisciplinary cooperation is indispensable.

  11. Quality of Life Indicators for Individuals with Intellectual Disabilities: Extending Current Practice

    Science.gov (United States)

    Brown, Ivan; Hatton, Chris; Emerson, Eric

    2013-01-01

    Quality of life is a social construct that is measured by what are considered to be its most appropriate indicators. Quality of life measurement in intellectual disability reflects a variety of indicators, often grouped under life domains. Subjective and objective methods of measuring indicators each have strengths and drawbacks, but it is…

  12. Mothers with intellectual disabilities

    OpenAIRE

    Kolarič, Sandra

    2015-01-01

    For the theoretical part of this master's thesis foreign literature and finished foreign researches were studied. In this part of the thesis the characteristics of mothers with intellectual disabilities; factors, which influence the success of carrying out their mother role; and the rights of people with intellectual disabilities as parents, all based on Slovene legislation are included. We listed reasons for limiting reproduction for women with intellectual disabilities and issues concerning...

  13. Caring, Employment, and Quality of Life: Comparison of Employed and Nonemployed Mothers of Adults with Intellectual Disability

    Science.gov (United States)

    Chou, Yueh-Ching; Pu, Cheng-Yun; Kroger, Teppo; Fu, Li-yeh

    2010-01-01

    The effects of caregiving on mothers of adults with intellectual disability was examined by determining whether there are differences in quality of life and related factors between mothers with different employment status. Study participants were 302 working-age mothers who had adult children with intellectual disability based on the 2008 census…

  14. Quality of care and service trajectories for people with intellectual disabilities: defining the aspects of quality from the client's perspective.

    Science.gov (United States)

    Barelds, Anna; van de Goor, Ien; van Heck, Guus; Schols, Jos

    2010-03-01

    Care and service trajectories for people with intellectual disabilities (i.e. people with mental retardations) are routes within the healthcare delivery system that consist of all the steps that people with intellectual disabilities and their families have to take in order to realise the needed care and services. This article aims to identify the quality aspects of trajectories that are considered important by people with intellectual disabilities and their parents/relatives. In addition, it examines how these aspects are related to quality determinants mentioned in the literature on integrated care and to authoritative models for quality assessment of care and service delivery. Quality aspects were collected during eight focus group discussions with people with intellectual disabilities or their parents/relatives. In addition, quality determinants of integrated care and authoritative models for quality assessment were selected by means of a thorough review of the literature. Finally, the quality aspects identified using focus groups were compared to the determinants and models found in the literature. The quality aspects presented by people with intellectual disabilities referred particularly to the immediate situation in receiving care and services, such as 'keeping appointments' and 'time and attention', whereas parents/relatives also referred to broader 'organisational issues', such as 'access to support' and 'problems with placement'. The quality aspects, however, are minimally related to the quality determinants of integrated care, probably because clients and their parents/relatives find it difficult to have an overview of the coherence between the various actions that have to be performed, when going through the trajectories. In contrast, the quality aspects seem to fit into the domains of the authoritative models for quality assessment, probably because of the minimal focus of the models on long-term aspects in care and service delivery.

  15. What is an Intellectual Disability?

    Science.gov (United States)

    ... for Educators Search English Español What Is an Intellectual Disability? KidsHealth / For Kids / What Is an Intellectual Disability? ... learning and becoming an independent person. What Causes Intellectual Disabilities? Intellectual disabilities happen because the brain gets injured ...

  16. Anesthesia for intellectually disabled

    Directory of Open Access Journals (Sweden)

    Kapil Chaudhary

    2017-01-01

    Full Text Available Anesthetizing an intellectually disabled patient is a challenge due to lack of cognition and communication which makes perioperative evaluation difficult. The presence of associated medical problems and lack of cooperation further complicates the anesthetic technique. An online literature search was performed using keywords anesthesia, intellectually disabled, and mentally retarded and relevant articles were included for review. There is scarcity of literature dealing with intellectually disabled patients. The present review highlights the anesthetic challenges, their relevant evidence-based management, and the role of caretakers in the perioperative period. Proper understanding of the associated problems along with a considerate and unhurried approach are the essentials of anesthetic management of these patients.

  17. RELATION BETWEEN QUALITY OF LIFE, CHOICE MAKING, AND FUTURE EXPECTATIONS IN ADULTS WITH INTELLECTUAL DISABILITY

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    Vesna KOSTIKJ-IVANOVIKJ

    2016-09-01

    Full Text Available Introduction: Quality of life of individuals depends significantly on the ability to have control over everyday life, realized through the freedom to make choices from available options and self-determination. Objective: To determine the correlation between possibilities for making choices and expectations for the future with the quality of life in adults with intellectual disabilities according self-assessment and assessment by others. Methods: Descriptive, method of correlation and comparative analysis ware applied. From techniques, analysis of documents, surveys with the Quality of life questionnaire by Schalock and Keith and Questionnaire for expectations for the future by Speck, and scaling with the Scale for assessment of the opportunities for making choices by Kishi et al. Sample consisted of 130 intellectually disabled adults and 130 proxies. For establishing connection between the examined phenomena Pearson correlation coefficient (r was used, at p<0,01. Results: There is a strong correlation between the results obtained from the questionnaires about quality of life and opportunities for making choices, self-assessment r(130=0,497, p<0,01, assessment by others r(130=0,482, p<0,01. There is a correlation between the results obtained from the questionnaires about quality of life and expectations for the future, but not very strong, self-assessment r(130=0,233, p=0,008<0,01, assessment by others r(130=0,305, p<0,01. Conclusion: There is a correlation between opportunities for making choices and expectations for the future with the quality of life in adults with intellectual disabilities. To improve the quality of life in these individuals, it is necessary to design programs that will develop self-concept, abilities for self-determination and making personal choices.

  18. Friendship Quality in Adolescents with and without an Intellectual Disability

    Science.gov (United States)

    Tipton, Leigh A.; Christensen, Lisa; Blacher, Jan

    2013-01-01

    Background: High friendship quality is often defined by high levels of intimacy, companionship, closeness and low levels of conflict. Quality friendships develop over time and may be influenced by both behaviour problems and social skills. Materials and methods: Participants were 103, 13-year-old adolescents with or without intellectual…

  19. A Comparison of Quality of Life Outcomes for People with Intellectual Disabilities in Supported Employment, Day Services and Employment Enterprises

    Science.gov (United States)

    Beyer, Stephen; Brown, Tony; Akandi, Rachel; Rapley, Mark

    2010-01-01

    Background: Policy objectives for people with intellectual disabilities include day service modernization and the promotion of paid employment and quality of life. Quality of life is under represented as an outcome measure in vocational research. This research compares subjective and objective quality of life, and quality of work environment for…

  20. Oral health-related quality of life of Portuguese adults with mild intellectual disabilities

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    Pereira, Paulo Almeida; Nunes, Manuel; Mendes, Rui Amaral

    2018-01-01

    Individuals with disabilities are regarded as a highly vulnerable population group, particularly as far as oral health is concern. However, few studies have assessed the impact of the oral condition on the quality of life of these individuals. Therefore, the aim of this study is to expand knowledge on the oral health status of the Portuguese adults with mild intellectual disability, and to assess how the patient’s oral health is related to their quality of life. A sample of 240 adults with mild intellectual disabilities linked to the Portuguese Federation for Intellectual Disability, were interviewed using a previously validated version of the Oral Health Impact Profile. An oral health examination was also conducted using three oral health indexes: Clinical Oral Health Index (COHI); Clinical Oral Care Needs Index (COCNI) and the Clinical Oral Prevention Index (COPI). Sociodemographic characteristics and dental health factors were also collected, following statistical analysis. More than half of the individuals (54,9%) presented one or more problems of major to severe impact on health (COHI level 2); only 4,6% of the individuals do not need treatment or examination (COCNI level 0) and 85% of the study sample needs measures of educational or preventive action (COPI level 1). In 76,9% of the participants, oral health had impact on the quality of life. The most affected dimensions of life were physical pain with 61,9%, followed by psychological discomfort and psychological disability with 45,1% and 45%, respectively. With relation to oral health factors and sociodemographic variables it was verified that fewer teeth and higher self-perception of need for dental treatment had a negative impact on the quality of life. On the other hand, institutionalization and an increase in at least one category in the self-perception of the oral health status had a positive impact on the quality of life. Given the high burden of oral disease and the considerable impact on quality of

  1. Quality of Life in Caregivers of Children and Adolescents with Intellectual Disabilities: Use of WHOQOL-BREF Survey

    Science.gov (United States)

    Lin, Jin-Ding; Hu, Jung; Yen, Chia-Feng; Hsu, Shang-Wei; Lin, Lan-Ping; Loh, Ching-Hui; Chen, Mei-Hua; Wu, Sheng-Ru; Chu, Cordia M.; Wu, Jia-Ling

    2009-01-01

    The present study based on World Health Organization quality of life (WHOQOL-BREF) scale to examine quality of life of the caregivers caring for their children/adolescents with intellectual disabilities in Taiwan, and the factors contributing to their quality of life. Structured interviews were conducted with 597 caregivers of children/adolescents…

  2. Sexuality and Intellectual Disability

    Science.gov (United States)

    ... for loving and fulfilling relationships with others. Individual rights to sexuality, which is essential to human health and well-being, have been denied. This loss has negatively affected people with intellectual disabilities in gender identity, friendships, self-esteem, body image ...

  3. Family quality of life of Chinese families of children with intellectual disabilities.

    Science.gov (United States)

    Hu, X; Wang, M; Fei, X

    2012-01-01

    The concepts of quality of life and family quality of life (FQOL) are increasingly being studied in the field of intellectual disabilities (ID) in China as important frameworks for: (1) assessing families' need for supports and services; (2) guiding organisational and service delivery system changes; and (3) evaluating quality family outcomes. The present study focused on exploring the perceptions of Chinese families who have a child with an ID regarding FQOL as well as examining the factor structure of FQOL concept from Chinese families. The Chinese version of the Family Quality of Life Scale was used to survey Chinese families living in the urban and suburban areas of Beijing who have a child with ID. A total of 442 families participated in this study. Confirmatory factor analysis was used to test the factor structure of FQOL. Multivariate analysis was also used to examine group differences among families in terms of family demographic variables. A five-factor structure of the FQOL construct was found in the Chinese sample, suggesting a similar factor structure found from US families in the literature. Different living conditions (e.g. housing and transportation) tended to affect significantly families' satisfaction ratings of their FQOL. It is also found that family income and severity of disability of the child are predictors of families' satisfaction ratings of FQOL. The preliminary findings of this study suggest a cross-cultural factor structure comparability of FQOL between samples in the USA and China. Results call for further examination of the family-centred service and support as a mediator on the interactive relationship between family characteristics, family needs and FQOL outcomes. © 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

  4. Understanding Intellectual Disability through Rasopathies

    OpenAIRE

    Alvaro, San Martín; Rafael, Pagani Mario

    2014-01-01

    Intellectual disability, commonly known as mental retardation in the International Classification of Disease from World Health Organization, is the term that describes an intellectual and adaptive cognitive disability that begins in early life during the developmental period. Currently the term intellectual disability is the preferred one. Although our understanding of the physiological basis of learning and learning disability is poor, a general idea is that such condition is quite permanent...

  5. Qualities in friendship - Within an outside perspective - Definitions expressed by adolescents with mild intellectual disabilities.

    Science.gov (United States)

    Sigstad, Hanne Marie Høybråten

    2017-03-01

    This study examined how adolescents with mild intellectual disabilities define qualities of friendship and discussed the extent to which these definitions adhere to established definitions of close friendship. The study was based on qualitative interviews with 11 adolescents in secondary school. The interviews were supplemented with information from six parents. A thematic structural analysis was used to identify themes. Qualities of friendship were categorized as mutual preference, mutual enjoyment, shared interactions, care, mutual trust and bonding. The criteria for close friendship seem to be fulfilled, albeit to a moderate degree. Closeness and reciprocity appear to be significant in this study, although these features have been considered less relevant within this target group in previous research. Differences in definitions may explain divergent results compared with other studies, and the need to achieve equivalence in friendship may be another.

  6. Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring.

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    Totsika, Vasiliki; Hastings, Richard P; Vagenas, Dimitrios

    2017-05-01

    There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors. © 2016 John Wiley & Sons Ltd.

  7. The Effect of Classical Music on Painting Quality and Classroom Behaviour for Students with Severe Intellectual Disabilities in Special Schools

    Science.gov (United States)

    Waugh, Russell F.; Riddoch, Jane V.

    2007-01-01

    There are few studies measuring the effects on painting quality of playing background classical music at special schools. Primary students with severe intellectual disabilities (N=24) were taught abstract painting in a two-part method. The first part involved a Pictorial Only method and the second, immediately following it, involved a Pictorial…

  8. Perspectives on quality of life of people with intellectual disabilities: the interpretation of discrepancies between clients and caregivers

    NARCIS (Netherlands)

    Janssen, C.G.C.; Schuengel, C.; Stolk, J.

    2005-01-01

    Large discrepancies have sometimes been found between the quality of life (QOL) experienced by clients with intellectual disabilities and their QOL as described by their caregivers. Olsen and Schober (Soc Indi Res 1993; 28: 173-193) may have provided a framework useful to conceptualize such

  9. Qualities in Friendship--Within an Outside Perspective--Definitions Expressed by Adolescents with Mild Intellectual Disabilities

    Science.gov (United States)

    Sigstad, Hanne Marie Høybråten

    2017-01-01

    Background: This study examined how adolescents with mild intellectual disabilities define qualities of friendship and discussed the extent to which these definitions adhere to established definitions of close friendship. Materials and Methods: The study was based on qualitative interviews with 11 adolescents in secondary school. The interviews…

  10. Quality of Life as a Mediator between Behavioral Challenges and Autistic Traits for Adults with Intellectual Disabilities

    Science.gov (United States)

    Garcia-Villamisar, Domingo; Dattilo, John; Matson, Johnny L.

    2013-01-01

    A multiple mediation model was proposed to integrate core concepts of challenging behaviors with autistic traits to increase understanding of their relationship to quality of life (QoL). It was hypothesized that QoL is a possible mediator between the severity of challenging behaviors and autistic traits in adults with intellectual disability.…

  11. Five Essential Features of Quality Educational Programs for Students with Moderate and Severe Intellectual Disability: A Guide for Administrators

    Science.gov (United States)

    Pennington, Robert; Courtade, Ginevra; Jones Ault, Melinda; Delano, Monica

    2016-01-01

    Despite encouraging changes in the expectations of programming for persons with moderate to severe intellectual disability (MSD), data suggest that programs for these individuals are still lacking in several critical areas. Building administrators play a key role in promoting high quality programs for students with MSD within local schools but may…

  12. Quality-Enhancing Interventions for People with Profound Intellectual and Multiple Disabilities: A Review of the Empirical Research Literature

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    Maes, Bea; Lambrechts, Greet; Hostyn, Ine; Petry, Katja

    2007-01-01

    Background: This study provides an overview of empirical research on the effectiveness of quality-enhancing interventions for people with profound intellectual and multiple disabilities (PIMD). Method: Through computerised searches of the PsycINFO and ERIC databases, and using several search criteria specifically relating to the target group and…

  13. Social networks of people with mild intellectual disabilities: characteristics, satisfaction, wishes and quality of life.

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    van Asselt-Goverts, A E; Embregts, P J C M; Hendriks, A H C

    2015-05-01

    A supportive social network is crucial for facilitating social inclusion, which can, in turn, contribute to the quality of life (QOL) for people with intellectual disabilities (ID). In this study, we investigate how people with mild ID perceive their social networks and which network characteristics relate to satisfaction with the network and perceived QOL. Data were gathered from 33 young adults with a mild to borderline ID using structured questionnaires: the MSNA to map the social network, the IDQOL-16 to assess QOL, and a questionnaire to determine satisfaction and wishes with regard to the social network. The majority of the participants (73.1%) were satisfied with their social networks. Improvement in the area of strengthening existing ties (e.g. more frequent contact, better contact) was desired as opposed to expansion of the network. Affection--especially towards family and professionals--was most strongly related to perceived QOL. It appears to be essential that relatives live in the same town, can frequently meet up and provide both emotional and practical support. The significance of family and the importance of high-quality interpersonal relationships between professional and client in the lives of young adults with ID cannot be overestimated. Although measures of satisfaction and wishes can have limitations, in actual practice it is considered useful to assess the opinions of clients with respect to their social networks. Interventions can then be tailored to the needs and wishes of the persons themselves. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  14. The Effectiveness of the Quality of Life Therapy on Parental Stress and its Dimensions among Mothers with Intellectually Disabled Children

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    صدیقه آقائی

    2017-09-01

    Full Text Available The purpose of this research was to examine the effectiveness of quality of life therapy on reducing parental stress and its dimensions among mothers who have children with intellectual disability. The research was designed as semi-experimental pretest-posttest with a control group. The statistical population was all mothers who had school children with intellectual disability in Semirom town. The statistical sample contained 30 mothers with intellectually disabled children who were voluntary selected. They were randomly assigned in experimental (15 mothers and control (15 mothers groups. While the control group was in waiting list, the experimental group received eight 90-minutes sessions of quality of life therapy. The measurement was the short form of Parental Stress Questionnaire (Abedin, 1983. Both groups were evaluated in pre-test and post-test. Collected data were analyzed by descriptive (means and standard deviations and inferential statistic (multivariate covariate analysis methods. The results showed that the scores of control group in posttest parental stress was higher in comparison to experimental group. As regard to the results it can be said that the quality of life therapy training is significantly effective on improving parental stress and its dimensions among mothers with Intellectually Disabled Children.

  15. Subjective Quality of Life of Women with Intellectual Disabilities: The Role of Perceived Control over Their Own Life in Self-Determined Behaviour

    Science.gov (United States)

    Strnadova, Iva; Evans, David

    2012-01-01

    Background: Quality of life for people with intellectual disabilities has been reported in the research literature across differing demographics. There has been, however, little research that has examined in-depth the experiences of women with intellectual disabilities aged 40 years or older. Materials and methods: Fifty-five women from Sydney,…

  16. Intellectual disability and homelessness.

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    Mercier, C; Picard, S

    2011-04-01

    The association between poverty and intellectual disability (ID) has been well documented. However, little is known about persons with ID who face circumstances of extreme poverty, such as homelessness. This paper describes the situation of persons with ID who were or are homeless in Montreal and are currently receiving services from a team dedicated to homeless persons. (1) To describe the characteristics, history and current situation of these persons; and (2) to report within-group differences as a function of gender and current residential status. The data were collected from files using an anonymous chart summary. Descriptive statistics on the whole sample (n = 68) and inferential statistics on cross-tabulations by gender and residential status were performed. Persons with ID exhibited several related problems. Some of these persons, primarily women, experienced relatively short periods of homelessness and their situations stabilised once they were identified and followed up. Other persons with ID experienced chronic homelessness that appeared to parallel the number and severity of their other problems. When compared with a previous epidemiological study of the homeless in Montreal, the population of homeless persons with ID differed from the overall homeless population in a number of respects. The results suggest prevention and intervention targets. The need for epidemiological research appears particularly clear in light of the fact that below-average intellectual functioning has been identified as a risk factor for homelessness and a predisposing factor for vulnerability among street people. © 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

  17. The Association Between Dental Anxiety and Oral Health Related Quality of Life Among Individuals with Mild Intellectual Disability

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    Sultan Keleş

    2018-04-01

    Full Text Available Objective: The aim of this study is to determine the oral health related quality of life and the effect of dental anxiety on the oral health related quality of life in young, mildly intellectually disabled individuals who are attending a special school. Materials and Methods: Eighty six mildly intellectually disabled students participated this cross-sectional study. Oral health-related quality of life-United Kingdom Scale and Oral Health Impact Profile-14 were used to evaluate the effects of oral health of the individuals on their quality of life. Modified Dental Anxiety Scale was used to determine the dental anxiety levels of the individuals. Data were analyzed statistically. Results: The mean age of the participants was 17.12±1.40 years and the mean decayed, missing, and filled teeth (DMFT score of the students was 3.10±2.76. According to the Modified Dental Anxiety Scale, 28.0% of the students had dental anxiety. A significant inverse relationship was detected between dental anxiety levels and oral health-related quality of life (r=-0.239; p=0.028. Conclusion: Nearly 30% of individuals with mild intellectual disabilities were determined to have dental anxiety. Considering that the oral health-related quality of life decreases with increasing dental anxiety, it may be beneficial for dentists to administer premedication before treatment to decrease the anxiety levels of these patients.

  18. Sibling advocates of people with intellectual disabilities.

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    Ying Li, Eria Ping

    2006-06-01

    The aim of this study was to examine the experience of the first generation of sibling advocates in Hong Kong. A qualitative approach was adopted and six sibling advocates of people with intellectual disabilities from one non-government organization were interviewed. Data were analyzed using a constant comparative method and content analysis. Findings revealed that the six participants were reactive in the process of taking up the caregiver responsibility and they performed three functions: to advocate for more service provision, to improve service quality, and to facilitate communication between individual service units and family members of people with intellectual disabilities. All of the participants expressed that they needed support from service providers when they tried to function as the sibling advocates. Strategies to promote the involvement of siblings of people with intellectual disabilities as advocates are discussed and it is expected that more siblings of people with intellectual disabilities will be supported to have a higher level of involvement in advocacy.

  19. Epilepsy and Intellectual and Developmental Disabilities

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    Oguni, Hirokazu

    2013-01-01

    The co-occurrence of epilepsy in people with intellectual disabilities (ID) and other developmental disabilities (DD) has received attention because it has a significant negative impact on health, well-being, and quality of life. The current research investigating the frequency and form of epilepsy in children with ID and DD is reviewed, with…

  20. Does Quality of Life Differ for Children with Autism Spectrum Disorder and Intellectual Disability Compared to Peers without Autism?

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    Arias, Víctor B.; Gómez, Laura E.; Morán, Ma. Lucía; Alcedo, Ma. Ángeles; Monsalve, Asunción; Fontanil, Yolanda

    2018-01-01

    The main goal was to test if children with intellectual disability (ID) and autism spectrum disorder (ASD) show lower quality of life (QOL) in comparison to those with only ID. The KidsLife Scale was applied to 1060 children with ID, 25% of whom also had ASD, aged 4-21 years old. Those with ASD showed lower scores in several QOL domains but, when…

  1. Intellectual Disability and Parenthood

    Directory of Open Access Journals (Sweden)

    Isack Kandel

    2005-01-01

    Full Text Available Parenthood in persons with intellectual disability (ID is an issue of concern for the family, guardians, and professionals as there are many sentiments and problems involved: financial, technical, medical, legal, and above all moral. People with intellectual, developmental, or other disabilities have feelings, want relationships, and are able to have children also. The attitude of society has changed through time from the early eugenic concern with heredity and fertility, to a focus on the risk to the children due to parental neglect or abuse, to acceptance and a search for solutions to parental training and support. This change can be seen as a result of a shift from institutional care to community care and normalization. This paper reviews available research, prevalence, service issues, experience from around the world, and relates to the situation in Israel. Jewish Law has been very progressive regarding the possibility of marriage between persons with ID (in contrast to American Law where historically this right has been denied, until recently. Recent research has shown that, in the case of such a union resulting in children, although they require some supervision, family, friends, and social welfare agencies have scrutinized these families so much they are in constant fear of their child being taken away. There is little information on the number of such cases and an overall dearth of information on the effects on the children, although one recent study from the U.K. has shown a varied picture of resilience and a close, warm relationship later on with the family and especially the mother.

  2. Quality of Life in Persons with Intellectual Disabilities and Mental Health Problems: An Explorative Study

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    Filip Morisse

    2013-01-01

    Full Text Available The field of intellectual disability (ID is strongly influenced by the Quality of Life paradigm (QOL. We aimed at investigating whether or not the QOL paradigm also applies to clients with ID and cooccurring mental health problems. This paper aims at stimulating a debate on this topic, by investigating whether or not QOL domains are universal. Focus groups with natural and professional network members were organized to gather qualitative data, in order to answer two questions: (1 Are the QOL dimensions conceptualized in the model of Schalock et al. applicable for persons with ID and mental health problems? (2 What are indicators relating to the above-mentioned dimensions in relation to persons with ID and mental health problems? The results offer some proof for the assumption that the QOL construct seems to have universal properties. With regard to the second question, the study revealed that the natural and professional network members are challenged to look for the most appropriate support strategies, taking specific indicators of QOL into account. When aspects of empowerment and regulation are used in an integrated manner, the application of the QOL paradigm could lead to positive outcomes concerning self-determination, interdependence, social inclusion, and emotional development.

  3. Understanding intellectual disability through RASopathies.

    Science.gov (United States)

    San Martín, Alvaro; Pagani, Mario Rafael

    2014-01-01

    Intellectual disability, commonly known as mental retardation in the International Classification of Disease from World Health Organization, is the term that describes an intellectual and adaptive cognitive disability that begins in early life during the developmental period. Currently the term intellectual disability is the preferred one. Although our understanding of the physiological basis of learning and learning disability is poor, a general idea is that such condition is quite permanent. However, investigations in animal models suggest that learning disability can be functional in nature and as such reversible through pharmacology or appropriate learning paradigms. A fraction of the cases of intellectual disability is caused by point mutations or deletions in genes that encode for proteins of the RAS/MAP kinase signaling pathway known as RASopathies. Here we examined the current understanding of the molecular mechanisms involved in this group of genetic disorders focusing in studies which provide evidence that intellectual disability is potentially treatable and curable. The evidence presented supports the idea that with the appropriate understanding of the molecular mechanisms involved, intellectual disability could be treated pharmacologically and perhaps through specific mechanistic-based teaching strategies. Copyright © 2014 Elsevier Ltd. All rights reserved.

  4. Assessment of the quality of life in families with children who have intellectual and developmental disabilities in Slovenia.

    Science.gov (United States)

    Cagran, B; Schmidt, M; Brown, I

    2011-12-01

    Research was conducted, within the framework of the International Family Quality of Life Project, on the quality of life of families with a member who has a disability. We concentrated on the nine specific domains that the family life measure used, and recorded data from five of its six measurement dimensions: Importance, Opportunities, Initiative, Attainment and Satisfaction. The sample consisted of 20 families from Slovenia with children who have intellectual or developmental disabilities. The data were collected using the Family Quality of Life Survey-2006. Except for Community Interaction, the other domains (Health, Financial Well-Being, Family Relations, Support from Others, Support Services, Influence of Values, Careers, Leisure and Recreation) show statistically significant differences among the five dimensions measured. Importance was rated highest, and Attainment and Opportunities were rated lowest, while Initiative and Satisfaction were evaluated lower than Importance but higher than Attainment and Opportunities. Among the domains of family life, Family Relations was evaluated the highest from the perspective of all five dimensions. The family members rated Importance high for all of the quality of family life domains, but it appears from the lower Opportunities scores that their opportunities are limited; this may result in fewer possibilities for attaining a better quality of life. The results of our research are useful to Slovene researchers who work in the areas of special pedagogy and rehabilitation, politicians, non-governmental organisations and social services. The quality of life of families with children with disabilities, their empowerment and their inclusion into community life should be significantly enhanced when consideration is given to all the family members' support and service needs. © 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

  5. Relationship between individual quality of life and family quality of life for people with intellectual disability living in Italy.

    Science.gov (United States)

    Bertelli, M; Bianco, A; Rossi, M; Scuticchio, D; Brown, I

    2011-12-01

    There is substantial literature investigating quality of life (QoL) of individuals with intellectual disability (ID). QoL of families of people with ID is emerging as an important field of research. Despite this, there is a lack of studies regarding their relationship. The present paper aimed to study the relationship between QoL scores of individuals with ID and members of their families. Twenty-seven parents or relatives of 27 adults with ID were recruited by four different research centres across Tuscany (Italy) to be interviewed through the Italian adaptation of the Family Quality of Life Survey - 2006 (FQoLS-2006), a tool developed for use in a multiple-country study on family QoL. The FQoLS-2006 was translated and adapted to Italian through three revisions. The last was submitted to the authors of the original version, who also maintain an electronic data file and data archive for statistical evaluations in various countries. QoL of persons with ID was assessed through the administration of the Quality of Life - Instrument Package. QoL scores were analysed to describe population characteristics and to examine the relationships among measures of individual and family QoL using correlations (Pearson and Spearman). Findings showed that family ratings of QoL were generally low. Families interviewed reported a low level of QoL in 'Support from Others' and 'Community Interaction', while 'Family Relationships' and 'Health of the Family' rated higher. For individual QoL, individuals had the lowest scores in the area of 'Spiritual being' and higher scores in the area of 'Physical being'. Correlations examining possible relationships among Importance, Satisfaction and Opportunities found some statistically significant correlation coefficients between some aspects of the three main areas of individual QoL (Being, Belonging and Becoming) and the nine family domains. Most of these correlations regarded family 'Financial Well-Being', 'Family Relationships, 'Support from

  6. Influence of the type of housing on the quality of life of the elderly with intellectual or development disability

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    Irene SÁENZ MURGA

    2018-03-01

    Full Text Available One of the factors that affect the quality of life of people with intellectual or developmental disabilities is the type of housing in which they live. The purpose of this study is to determine the influence of the type of housing on the quality of life of old people with intellectual or developmental disabilities. To obtain the information, a reliable and valid questionnaire was used as instrument, which is the GENCAT Scale, to which a series of items has been added to gather the sociodemographic variables, in an ad hoc questionnaire. The number of participants is 268, aged between 45 and 81 years old, belonging to the Communities of Castilla y León and La Rioja. The results show that the participants present higher quality of life when they live in dwellings in the community. Of the types of housing analyzed, it has been detected that those in which the specific supports and resources are offered to the users, the scores are higher in the dimensions Interpersonal Relations, Personal Development, Self-determination and Physical Wellbeing. Therefore, as stated in the starting hypothesis, in these mentioned areas a higher quality of life is detected.

  7. Fruit flies and intellectual disability

    OpenAIRE

    Bolduc, François V.; Tully, Tim

    2009-01-01

    Mental retardation—known more commonly nowadays as intellectual disability—is a severe neurological condition affecting up to 3% of the general population. As a result of the analysis of familial cases and recent advances in clinical genetic testing, great strides have been made in our understanding of the genetic etiologies of mental retardation. Nonetheless, no treatment is currently clinically available to patients suffering from intellectual disability. Several animal models have been use...

  8. Life Satisfaction in Persons with Intellectual Disabilities

    Science.gov (United States)

    Lucas-Carrasco, Ramona; Salvador-Carulla, Luis

    2012-01-01

    We appraised life satisfaction using the Satisfaction with Life Scale (SWLS), and analysed its psychometric properties in persons with intellectual disability (ID). Ninety-nine persons with ID from four services in Spain participated. A battery of subjective assessments was used, including the SWLS, a Quality of Life measure (WHOQOL-BREF), and…

  9. Mood disorders in intellectual disability.

    Science.gov (United States)

    Hurley, Anne D

    2006-09-01

    This article examines reviews and research on the diagnosis and treatment of mood disorders in people with intellectual disability published from September 2004 to December 2005. Patients with intellectual disability have limitations in verbal ability, and with increasing levels of disability may have an atypical clinical presentation. Thus, methods to diagnose mood disorders were a major research focus. Informant-rating scales and two self-report instruments provided data on thought patterns, aberrant behavior, appetite, and suicidality. Behavioral symptoms such as aggression were frequently associated with mood disorders. Pharmacotherapy and electroconvulsive therapy were found to be effective treatments. Mood disorders were frequently identified in people with intellectual disability, although suicide was still quite rare. Patients with milder levels of disability can use self-report measures and can be diagnosed using standard criteria with little modification. For those with more severe disability, diagnosis is challenging and often requires the use of residual categories. Atypical clinical presentation, including maladaptive behaviors, lent support for 'behavioral equivalent' substitutes of standard criteria. Typical pharmacological agents were effective for depression and electroconvulsive therapy for treatment-resistant bipolar disorder.

  10. Rights and quality of life of individuals with intellectual disability and extensive support needs

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    Patricia NAVAS MACHO

    2018-04-01

    Full Text Available People with intellectual (ID and developmental disabilities who have generalized or extensive support needs constitute a particularly vulnerable group that has traditionally experienced situations of exclusion. Despite this, their situation has not been a priority subject of study nor have there been specific developments in social policy to respond to their needs, which can be translated into an absence of interest in knowing the reality of these group, difficulties to guarantee the fulfillment of their rights, and lack of initiative aimed to achieve their full inclusion in society. Is therefore necessary to undertake different actions, translated into objectives of the present work: to explore and synthesize existing data on this group in our country; to detect their needs and their fulfillment; and to propose evidence-based guidelines to ensure their well-being and rights. For this purpose, the methodology used consisted of: (a a review of the most relevant scientific literature of the last ten years on ID and extensive support needs; and (b the analysis of the results yield by two national surveys carried out in Spain: the Disability, Independence, and Dependency Situations survey, EDAD (INE, 2008, and the System for Autonomy and Care for Dependency, SAAD (IMSERSO, 2016, among others. Considering the disparities observed within this group, urgent lines of action are highlighted, which are aimed to improve the knowledge about the living conditions of people with more significant ID and drive better practices in the provision of supports to this group.

  11. Undernutrition in children with profound intellectual and multiple disabilities (PIMD): its prevalence and influence on quality of life.

    Science.gov (United States)

    Holenweg-Gross, C; Newman, C J; Faouzi, M; Poirot-Hodgkinson, I; Bérard, C; Roulet-Perez, E

    2014-07-01

    To estimate the prevalence of undernutrition among children with profound intellectual and multiple disabilities (PIMD) and to explore its influence on quality of life. Seventy-two children with PIMD (47 male; 25 female; age range 2 to 15 years 4 months; mean age 8.6, SD 3.6) underwent an anthropometric assessment, including body weight, triceps skinfold thickness, segmental measures and recumbent length. Undernutrition was determined using tricipital skinfold percentile and z-scores of weight-for-height and height-for-age. The quality of life of each child was evaluated using the QUALIN questionnaire adapted for profoundly disabled children. Twenty-five children (34.7%) were undernourished and seven (9.7%) were obese. Among undernourished children only eight (32 %) were receiving food supplements and two (8%) had a gastrostomy, of which one was still on a refeeding programme. On multivariate analysis, undernutrition was one of the independent predictors of lower quality of life. Undernutrition remains a matter of concern in children with PIMD. There is a need to better train professionals in systematically assessing the nutritional status of profoundly disabled children in order to start nutritional management when necessary. © 2013 John Wiley & Sons Ltd.

  12. Adolescents with intellectual disability and suicidal behavior.

    Science.gov (United States)

    Merrick, Joav; Merrick, Efrat; Morad, Mohammed; Kandel, Isack

    2005-09-08

    It has been assumed that impaired intellectual capacity could act as a buffer to suicidality in the population of children and adolescents with intellectual disability. The few studies that have been conducted contest this assumption and in fact the findings showed that the characteristics of suicidality in the population of children and adolescents with intellectual disability are very similar to other adolescents without intellectual disability. This paper reviews the few studies conducted and describe the symptomatology in this population.

  13. Adolescents with Intellectual Disability and Suicidal Behavior

    Directory of Open Access Journals (Sweden)

    Joav Merrick

    2005-01-01

    Full Text Available It has been assumed that impaired intellectual capacity could act as a buffer to suicidality in the population of children and adolescents with intellectual disability. The few studies that have been conducted contest this assumption, and in fact, the findings showed that the characteristics of suicidality in the population of children and adolescents with intellectual disability are very similar to other adolescents without intellectual disability. This paper reviews the few studies conducted and describe the symptomatology in this population.

  14. Construction of a Family Quality of Life Support Program for families of young and adults with intellectual disability

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    Natxo MARTÍNEZ RUEDA

    2017-02-01

    Full Text Available This paper is grounded on current conceptions on Family Quality of Life (FQoL and family-centered intervention. It describes a part of the building process of a ‘Program for Supporting Family Quality of Life’, within the SAIOA-BBK frame a Gorabide’s information, guidance and support service for people with intellectual disability and their families. A major goal of this project is making proposals for professionals to fit the link between FQoL assessment and its improvement. The program was developed, constructed and tested through collaborative methods between professionals and university researchers, aiming to an increase of FQoL of families with sons or daughters among the youth and adulthood period. Program features, and how it was experimented in a pilot sample of families (n = 5 is presented.

  15. A comparison of individual qualities of resiliency in adolescents with mild intellectual disability and typically developing adolescents

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    Pavlović Miroslav V.

    2017-01-01

    Full Text Available Intellectual disability (ID is a chronic adversity that increases the likelihood of negative developmental outcomes. The aim of this research is to examine differences between adolescents with mild ID and typically developing (TD adolescents in personal qualities which contribute to successful adaptation. The sample consisted of 92 adolescents with mild ID and 772 TD adolescents, 13-19 years of age, of both sexes. Resiliency was assessed using the Resiliency Scales for Children and Adolescents. In comparison to TD adolescents, adolescents with mild ID have significantly lower levels of sense of mastery and sense of relatedness and a higher level of emotional reactivity. In the subsample of adolescents with mild ID there were no age or sex differences for resiliency. Adolescents with mild ID have a lower level of resiliency than TD adolescents, which highlights the need to develop programs focused on personal qualities associated with positive developmental outcomes.

  16. Adverse events and the relation with quality of life in adults with intellectual disability and challenging behaviour using psychotropic drugs.

    Science.gov (United States)

    Scheifes, Arlette; Walraven, Sanne; Stolker, Joost Jan; Nijman, Henk L I; Egberts, Toine C G; Heerdink, Eibert R

    2016-01-01

    Psychotropic drugs are prescribed to approximately 30-40% of adults with intellectual disability (ID) and challenging behaviour, despite the limited evidence of effectiveness and the potential of adverse events. To assess the prevalence of adverse events in association with psychotropic drug use in adults with ID and challenging behaviour and to examine the relation of these adverse events with the person's quality of life. The presence of adverse events was measured with a questionnaire that had to be filled in by the physicians of the participants. Movement disorders were measured separately with a standardised protocol. The strength of the association between adverse events and Intellectual Disability Quality of Life-16 (IDQOL-16), and daily functioning was investigated using linear regression analyses, taking into account the severity of disease (CGI-S) as potential confounder. Virtually all of 103 adults with ID and challenging behaviour had at least one adverse event (84.4%) and almost half had ≥3 adverse events (45.6%) across different subclasses. Using psychotropic drugs increased the prevalence of adverse events significantly. Respectively 13% of the patients without psychotropic drugs and 61% of the patients with ≥2 psychotropic drugs had ≥3 adverse events. Having adverse events had a significantly negative influence on the quality of life. A large majority of all patients had at least one adverse event associated with psychotropic drug use. More attention is needed for these adverse events and their negative influence on the quality of life of these patients, taking into account the lack of evidence of effectiveness of psychotropic drugs for challenging behaviour. Copyright © 2015. Published by Elsevier Ltd.

  17. Neighbourhood and Community Experience, and the Quality of Life of Rural Adolescents with and without an Intellectual Disability.

    Science.gov (United States)

    Pretty, Grace; Rapley, Mark; Bramston, Paul

    2002-01-01

    A comparison of 14 Australian adolescents with mild intellectual disabilities and 13 typical adolescents found no significant differences between the groups on community usage and lifestyle patterns. The discussion promotes the inclusion of community factors when investigating community integration of adolescents with a disability. (Contains…

  18. Job Satisfaction, Quality of Work Life and Work Motivation in Employees with Intellectual Disability: A Systematic Review.

    Science.gov (United States)

    Kocman, Andreas; Weber, Germain

    2018-01-01

    Current research on employment options for people with Intellectual Disability emphasizes the importance of employee needs and satisfaction. The study aims at systematically reviewing the literature on job satisfaction and related constructs. A systematic literature search was conducted. Studies were included if (i) they are specific to effects of work, (ii) assessed variables are related to job satisfaction, QoWL, attitudes towards work or work motivation and if (iii) studies reported intellectual disability-specific results. Twenty-three studies met the inclusion criteria. Findings were classified according to the socio-cognitive model of job satisfaction. Current literature suggests high job satisfaction in people with intellectual disability. Predictors of job satisfaction are similar to people without disabilities, albeit the importance of factors differs. Stronger consideration of well-established theories and measures from organizational psychology would enhance future research. Findings indicate that high satisfaction ratings might result from lack of control over vocational decisions. © 2016 John Wiley & Sons Ltd.

  19. Whose Job Is It? Everyday Routines and Quality of Life in Latino and Non-Latino Families of Children with Intellectual Disabilities

    Science.gov (United States)

    Holloway, Susan D.; Domínguez-Pareto, Irenka; Cohen, Shana R.; Kuppermann, Miriam

    2014-01-01

    Previous studies indicate that families construct daily routines that enable the household to function smoothly and promote family quality of life. However, we know little about how activities are distributed between parents caring for a child with an intellectual disability (ID), particularly in Latino families. To address this gap, we…

  20. Changes on Quality of Life, Self-Efficacy and Social Support for Activities and Physical Fitness in People with Intellectual Disabilities through Multimodal Intervention

    Science.gov (United States)

    Pérez-Cruzado, David; Cuesta-Vargas, Antonio I.

    2016-01-01

    Background: People with intellectual disability have poor levels of physical activity, quality of life, fitness condition and self-efficacy and social support when they want to undertake physical activity so it is very important to improve these parameters in this population. Method: A prospective study was conducted. Data were measured before and…

  1. Health Professionals Working Effectively with Support Workers to Enhance the Quality of Support for Adults with Intellectual Disabilities: A Meta-Ethnography

    Science.gov (United States)

    Haines, David; Brown, Alexander

    2018-01-01

    Background: Paid support workers are often central to the quality of life of adults with intellectual disabilities. Health and social care professionals increasingly carry out interventions indirectly through those support workers and therefore need to understand how best to collaborate. Methods: This article synthesizes findings from the…

  2. Effects of the CD-Rom Version of the "Self-Advocacy Strategy" on Quality of Contributions in IEP Meetings of High School Students with Intellectual Disability

    Science.gov (United States)

    Cease-Cook, Jennifer; Test, David W.; Scroggins, La' Shawndra

    2013-01-01

    This study used a multiple-probe across participants design to examine the effects of the CD-Rom version of the "Self-Advocacy Strategy" on quality of contributions in Individual Education Plan (IEP) meetings of five high school students with intellectual disability. Results indicated a functional relationship between using the CD-Rom…

  3. Fruit flies and intellectual disability.

    Science.gov (United States)

    Bolduc, François V; Tully, Tim

    2009-01-01

    Mental retardation--known more commonly nowadays as intellectual disability--is a severe neurological condition affecting up to 3% of the general population. As a result of the analysis of familial cases and recent advances in clinical genetic testing, great strides have been made in our understanding of the genetic etiologies of mental retardation. Nonetheless, no treatment is currently clinically available to patients suffering from intellectual disability. Several animal models have been used in the study of memory and cognition. Established paradigms in Drosophila have recently captured cognitive defects in fly mutants for orthologs of genes involved in human intellectual disability. We review here three protocols designed to understand the molecular genetic basis of learning and memory in Drosophila and the genes identified so far with relation to mental retardation. In addition, we explore the mental retardation genes for which evidence of neuronal dysfunction other than memory has been established in Drosophila. Finally, we summarize the findings in Drosophila for mental retardation genes for which no neuronal information is yet available. All in all, this review illustrates the impressive overlap between genes identified in human mental retardation and genes involved in physiological learning and memory.

  4. Quality of Diagnosis and Treatment Plans After Using the 'Diagnostic Guideline for Anxiety and Challenging Behaviours' in People with Intellectual Disabilities: A Comparative Multiple Case Study Design

    NARCIS (Netherlands)

    Pruijssers, A.; Meijel, B. van; Maaskant, M.; Keeman, N.; Achterberg, T. van

    2016-01-01

    BACKGROUND: People with intellectual disabilities often have a multitude of concurrent problems due to the combination of cognitive impairments, psychiatric disorders (particularly anxiety) and related challenging behaviours. Diagnoses in people with intellectual disabilities are complicated. This

  5. INTELLECTUAL DISABILITY IN INDIVIDULAS WITH MENTAL DISORDERS

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    Miodrag VUJOVIKJ

    2017-10-01

    Full Text Available Introduction: A successful treatment of any disorder, condition or disease requires timely detection and accurate diagnostics. This is precisely what is missing in individuals with a dual diagnosis of an intellectual disability and a mental disorder, both in Macedonia and worldwide. In order to overcome the deficiencies in the treatment, and to improve the quality of life for these individuals as well, they should be detected on time and then approached with diagnosing and preparation of a plan for treating them. Goal: The main goal of this research is obtaining a result of the presence of intellectual disability among institutionalized individuals with mental disorders on the basis of the type of mental disorder, the age and the gender of the person. Also, one of the main goals is presenting the mental deterioration in individuals with mental disorders, as well as its connection with the age of the individuals with mental disorder. Despite having the basic goals, this research, as well as research on this subject from all over the world, serves as an example for raising the awareness about the diversity and atypical presentations of the patients with a dual diagnosis of intellectual disability and mental disorder. Methodology: For achieving the goal and tasks of this research, 50 individuals with different diagnosis of mental disorder, different age and different gender were tested. The sample that took part in this research was a suitable sample, i.e. individuals that during the research were hospitalized in the below mentioned public health institution. The research took place in PHI Psychiatric Hospital „Skopje“ from Skopje. For collecting the data in this research, as well as for achieving the goals of the research, two methods, three research techniques and two instruments were used. The methods that were used during this research included the method of comparative analysis and the method of correlation analysis, while the techniques

  6. An inexorable rise in intellectual disability?

    OpenAIRE

    Michiel Ras; Isolde Woittiez; Hetty van Kempen; Klarita Sadiraj

    2010-01-01

    Original title: Steeds meer verstandelijk gehandicapten? Demand for intellectual disability care has grown strongly in the Netherlands in recent years. Partly at the request of the Dutch Ministry of Health, Welfare and Sport, the Netherlands Institute for Social Research/SCP measured the number of people with intellectual disabilities applying for care. The results are contained in this report. Our inventory reveals that demand for intellectual disability care has risen by an average of 9% pe...

  7. Sexuality and Intellectual Disability.

    Science.gov (United States)

    Wenger, Jodi; Downes, Alison; Blum, Nathan; Augustyn, Marilyn

    Amad is a wonderful 16-year-old young man from Syria who has recently relocated to the United States from his war-torn native country. In his last few years in Syria, he was primarily at home with his mother, and they sought refuge with a maternal aunt in the United States seeking asylum and treatment of Amad's disability.At 8 years of age, he had intelligence testing in the United Arab Emirates, which showed a verbal intelligence score on the Wechsler intelligence scale for children (WISC) of 68 and a performance of 64. His working memory was 67 and his processing speed was 65. On arrival in the United States, his achievement was roughly at a third-grade level in Arabic. In the year and a half that he has been in the United States, he quickly improved his English skills, which he learned as a toddler. His father remains in Syria unable to safely immigrate and his mother is raising him alone in the United States with the help of her sister.They come to you for an urgent care visit because Amad recently was accused of sexual harassment by two girls at his high school. He is in a substantially separate program but is included for lunch and technology. While in the computer laboratory, he repeatedly approached the girls and asks them to "date" him, and on 1 occasion sat behind 1 girl and repeatedly reached out to stroke her long blonde hair.His mother is distraught because she recently found out that Amad also has a Facebook page and had been attempting to contact the same two girls on social media. The girls' parents recently threatened to file criminal harassment charges and Amad's mother comes to you asking for help with making Amad stop this activity. What would you do next?

  8. The health-related quality of life of children with refractory epilepsy: a comparison of those with and without intellectual disability.

    Science.gov (United States)

    Sabaz, M; Cairns, D R; Lawson, J A; Bleasel, A F; Bye, A M

    2001-05-01

    To determine whether refractory epilepsy affects the health-related quality of life (HRQOL) of children with or without intellectual disability (ID), and if the presence of ID independently compromises HRQOL in children with refractory epilepsy. Subjects were parents of children with refractory epilepsy, whose syndrome had been defined using ILAE (International League Against Epilepsy) criteria and video-EEG monitoring. Children had the presence or absence of ID determined by formal neuropsychological or educational assessment. The relative effect of epilepsy on the two intellectual ability groups was determined using relevant clinical variables. Parents completed a valid epilepsy-specific HRQOL questionnaire for children, the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE), and, depending on intellectual ability level, the Child Behaviour Checklist or Developmental Behaviour Checklist. Both intellectually normal children with epilepsy and children with epilepsy and ID were more likely to have psychosocial problems compared with their respective intellectual ability reference populations. The results also revealed that children with ID had reduced HRQOL compared with intellectually normal children; a result independent of epilepsy. Analysis of the relationship between epilepsy variables and HRQOL revealed that the QOLCE was the most sensitive in detecting variation in age at onset, seizure frequency, and medications taken. The HRQOL of children with refractory epilepsy is greatly affected, regardless of intellectual ability level. The presence of ID in children with epilepsy independently depresses HRQOL outcomes. Compared with two generic HRQOL measures, the QOLCE was the most sensitive measure to variation in epilepsy variables.

  9. Genetics Home Reference: X-linked intellectual disability, Siderius type

    Science.gov (United States)

    ... Cleft Lip and Palate MalaCards: x-linked intellectual disability, siderius type March of Dimes: Cleft Lip and Cleft Palate Merck Manual Consumer Version: Intellectual Disability Orphanet: X-linked intellectual disability, Siderius type Patient ...

  10. Job Satisfaction, Quality of Work Life and Work Motivation in Employees with Intellectual Disability: A Systematic Review

    Science.gov (United States)

    Kocman, Andreas; Weber, Germain

    2018-01-01

    Background: Current research on employment options for people with Intellectual Disability emphasizes the importance of employee needs and satisfaction. The study aims at systematically reviewing the literature on job satisfaction and related constructs. Methods: A systematic literature search was conducted. Studies were included if (i) they are…

  11. Psychometric qualities of a tetrad WAIS-III short form for use in individuals with mild to borderline intellectual disability

    NARCIS (Netherlands)

    Duijvenbode, N. van; Didden, H.C.M.; Hazel, T. van den; Engels, R.C.M.E.

    2016-01-01

    Objective: To investigate the reliability and validity of a Wechsler Abbreviated Scale of Intelligence-based Wechsler Adult Intelligence Scale - third edition (WAIS-III) short form (SF) in a sample of individuals with mild to borderline intellectual disability (MBID) (N=117; M-IQ=71.34; SDIQ=8.00,

  12. Do inclusive work environments matter? Effects of community-integrated employment on quality of life for individuals with intellectual disabilities.

    Science.gov (United States)

    Blick, Rachel N; Litz, Katherine S; Thornhill, Monica G; Goreczny, Anthony J

    2016-01-01

    More individuals with an intellectual disability now possess prerequisite skills and supports necessary for successful work force integration than did previous generations. The current study compared quality of life of community-integrated workers with those participating in sheltered vocational workshops and adult day care programs. We considered numerous indices of quality of life, including inclusion and community participation; satisfaction within professional services, home life, and day activities; dignity, rights, and respect received from others; fear; choice and control; and family satisfaction. Our data revealed several important differences in quality of life across daytime activities; participants involved in community-integrated employment tended to be younger, indicated a greater sense of community integration, and reported more financial autonomy than did those who participated in adult day care programs and sheltered workshops. However, individuals reported no differences in overall satisfaction across daytime activities. We discuss generational differences across employment status as well as possible explanations to account for high levels of satisfaction across daytime activities. Copyright © 2016 Elsevier Ltd. All rights reserved.

  13. Expanding Opportunities for Students with Intellectual Disability

    Science.gov (United States)

    Giangreco, Michael F.

    2017-01-01

    Research and experience tell us a great deal about how to successfully educate students with intellectual disability, but unfortunately this knowledge remains underutilized and inconsistently applied, writes researcher Michael F. Giangreco. Students with intellectual disability who have virtually identical profiles but live in different locales…

  14. Reliability and Utility of the Behaviour Support Plan Quality Evaluation Tool (BSP-QEII) for Auditing and Quality Development in Services for Adults with Intellectual Disability and Challenging Behaviour

    Science.gov (United States)

    McVilly, K.; Webber, L.; Paris, M.; Sharp, G.

    2013-01-01

    Background: Having an objective means of evaluating the quality of behaviour support plans (BSPs) could assist service providers and statutory authorities to monitor and improve the quality of support provided to people with intellectual disability (ID) who exhibit challenging behaviour. The Behaviour Support Plan Quality Evaluation Guide II…

  15. Exploring quality of life of children with cerebral palsy and intellectual disability: What are the important domains of life?

    Science.gov (United States)

    Davis, E; Reddihough, D; Murphy, N; Epstein, A; Reid, S M; Whitehouse, A; Williams, K; Leonard, H; Downs, J

    2017-11-01

    Although it is estimated that half of all children with cerebral palsy also have comorbid intellectual disability, the domains of quality of life (QOL) important for these children are not well understood. The aim of this study was to identify important domains of QOL for these children and adolescents. Due to the children's communication impairments, qualitative semi-structured interviews were conducted with 18 parents. The children (9 males) had a median age of 12 (range 7 to 17) years at interview and nearly two thirds were classified as Gross Motor Function Classification System IV or V. A grounded theory approach was used to identify domains of QOL. The 11 domains identified as important to QOL were physical health, body comfort, behaviour and emotion, communication, predictability and routine, movement and physical activity, nature and outdoors, variety of activity, independence and autonomy, social connectedness, and access to services. The domains of QOL that emerged from this study will be useful for professionals who support children with cerebral palsy and their families. They will also be important for developing a QOL instrument essential for informing the development of interventions and their monitoring and evaluation. © 2017 John Wiley & Sons Ltd.

  16. Health promotion for people with intellectual disabilities - A concept analysis.

    Science.gov (United States)

    Roll, Anne E

    2018-03-01

    Whereas 'health promotion' is a well-known concept for healthcare professionals, the concept of 'health promotion for people with intellectual disabilities' and its unique associated challenges are not well understood. This article provides a systematic analysis of how health promotion is being conceptualised for people with intellectual disabilities and how health promotion can work best in the light of this group's specific needs and limitations. Rodgers' evolutionary concept analysis. MEDLINE, PsycINFO, CINAHL and SocINDEX were searched using the search terms 'health promotion', 'people with intellectual disabilities' and 'developmental disabilities'. This review includes studies published between 1992 and 2014. A total of 52 articles were included. Health promotion for people intellectual disabilities, as discussed in the literature, focuses on four aspects, namely supporting a healthy lifestyle, providing health education, involving supporters and being person-centred. Antecedents of the concept 'health promotion for people with intellectual disabilities' were healthcare access and sensitised healthcare providers. The outcomes were improved health, being empowered, enhanced quality of life and reduced health disparities. This analysis provides a solid foundation for healthcare stakeholders' planning, implementing and evaluating health-promotion activities for people with intellectual disabilities at the policy level and in the community. © 2017 Nordic College of Caring Science.

  17. Quality of life assessment in intellectual disabilities: the Escala Pessoal de Resultados versus the World Health Quality of Life-BREF.

    Science.gov (United States)

    Simões, Cristina; Santos, Sofia; Claes, Claudia

    2015-02-01

    The aim of this study is to compare the applications of the Escala Pessoal de Resultados (EPR) and the World Health Quality of Life-BREF (WHOQOL-BREF) in quality of life (QOL) assessment of people with intellectual disabilities (ID). A total of 216 adults with ID were assessed (age ranging from 18 to 64 years; 128 people were diagnosed with mild, and 88 with moderate ID). The two scales were administered to each person to obtain their perception about their QOL. Statistically significant correlations (weak to moderate) were observed between both scales. The EPR and the WHOQOL-BREF demonstrated adequate reliability, construct, and discriminant validity in our sample. However, the group of adults with moderate ID scored higher on the WHOQOL-BREF than on the EPR. Results indicated that the two assessment instruments aim to evaluate different measures, and seem to be not interchangeable. Copyright © 2014 Elsevier Ltd. All rights reserved.

  18. Children with intellectual disability and hospice utilization.

    Science.gov (United States)

    Lindley, Lisa C; Colman, Mari Beth; Meadows, John T

    2017-02-01

    Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital conditions, and comorbidities. Yet, little is known about hospice care for children with intellectual disability. The purpose of this study was to explore the relationship between intellectual disability and hospice utilization. Additionally, we explored whether intellectual disability combined with motor dysfunction, progressive congenital conditions, and comorbidities influenced pediatric hospice utilization. Using a retrospective cohort design and data from the 2009 to 2010 California Medicaid claims files, we conducted a multivariate analysis of hospice utilization. This study shows that intellectual disability was negatively related to hospice enrollment and length of stay. We also found that when children had both intellectual disability and comorbidities, there was a positive association with enrolling in hospice care. A number of clinical implications can be drawn from the study findings that hospice and palliative care nurses use to improve their clinical practice of caring for children with ID and their families at end of life.

  19. Sexual health for people with intellectual disability.

    Science.gov (United States)

    Eastgate, Gillian

    2008-01-01

    People with intellectual disability experience the same range of sexual needs and desires as other people. However, they experience many difficulties meeting their needs. They may be discouraged from relieving sexual tension by masturbating. They face a high risk of sexual abuse. They are likely not to be offered the full range of choices for contraception and sexual health screening. Poor education and social isolation may increase their risk of committing sexual offences. However, with appropriate education and good social support, people with intellectual disability are capable of safe, constructive sexual expression and healthy relationships. Providing such support is an essential part of supporting people with intellectual disability.

  20. Quality of Diagnosis and Treatment Plans After Using the 'Diagnostic Guideline for Anxiety and Challenging Behaviours' in People with Intellectual Disabilities: A Comparative Multiple Case Study Design.

    Science.gov (United States)

    Pruijssers, Addy; van Meijel, Berno; Maaskant, Marian; Keeman, Noortje; van Achterberg, Theo

    2016-07-01

    People with intellectual disabilities often have a multitude of concurrent problems due to the combination of cognitive impairments, psychiatric disorders (particularly anxiety) and related challenging behaviours. Diagnoses in people with intellectual disabilities are complicated. This study evaluates the quality of the diagnoses and treatment plans after using a guideline that was developed to support professionals in their diagnostic tasks. A comparative multiple case study with an experimental and control condition, applying deductive analyses of diagnoses and treatment plans. The analyses revealed that the number of diagnostic statements and planned treatment actions in the experimental group was significantly larger and more differentiated than in the control condition. In the control group, consequential harm and protective factors were hardly mentioned in diagnoses and treatment plans. Working with the 'Diagnostic Guideline for Anxiety and CB' leads to improved diagnoses and treatment plans compared with care as usual. © 2015 John Wiley & Sons Ltd.

  1. The role of marital quality and spousal support in behaviour problems of children with and without intellectual disability.

    Science.gov (United States)

    Wieland, Natalie; Baker, B L

    2010-07-01

    Children with intellectual disability (ID) have been found to be at an increased risk for developing behavioural problems. The purpose of this study was to examine the relationship between the marital domain, including marital quality and spousal support, and behaviour problems in children with and without ID. The relationship between the marital domain and child behaviour problems was examined in 132 families of 6-year-olds with and without ID. Using hierarchical regression, these relationships were also studied over time from child ages 6-8 years. Child behaviour problems were assessed with mother-reported Child Behavior Checklist. The marital domain was measured using the Dyadic Adjustment Scale-7 and the Spousal Support and Agreement Scale. Mother-reported parenting stress and observed parenting practices were tested as potential mediators of the relationship between the marital domain and child behaviour problems. Mean levels of the marital domain were not significantly different between typically developing (TD) and ID groups, but there were significantly greater levels of variance in reported marital quality in the ID group at ages 6, 7 and 8. The marital domain score at child age 6 years predicted child behaviour problems at age 8 for the TD group only. This predictive relationship appeared to be a unidirectional effect, as child behaviour problems at age 6 were not found to predict levels of the marital domain at age 8. Parenting stress partially mediated this relationship for the TD group. The marital domain may have a greater impact on behavioural outcomes for TD children. Implications for future research and interventions are discussed.

  2. Mortality in People with Intellectual Disabilities

    Science.gov (United States)

    Heslop, Pauline; Lauer, Emily; Hoghton, Matt

    2015-01-01

    This paper reviews why an understanding of mortality data in general, and in relation to people with intellectual disabilities in particular, is an important area of concern, and introduces the papers in this Special Edition.

  3. 228 THE INTELLECTUAL DISABLED (MENTALLY IMPAIRED) IN ...

    African Journals Online (AJOL)

    Elizabeth

    The Intellectual disabled child is characterized by significantly sub average general intellectual ... by abnormal development, learning difficulties, and problem in social ... softened and classifications redefined some what to mild (IQ of 55 –70) moderate .... parents do not like the isolation of their children from normal children.

  4. STRUCTURE AND VALIDATION OF A CONTEXTUAL QUALITY OF LIFE SCALE FOR PEOPLE WITH INTELLECTUAL DISABILITIES IN SOCIAL SERVICES: AN ORGANIZATION-ORIENTED MEASURE FROM AN EXTERNAL PERSPECTIVE

    Directory of Open Access Journals (Sweden)

    Carolina Moliner

    2013-09-01

    Full Text Available The aim of this study is to develop and validate a scale on the Quality of Life (QoL of people with intellectual disabilities as assessed by family members (external perspective. The instrument measures improvement in QoL due to actions by organizations delivering services to individuals with intellectual disabilities (organization-oriented measure. In order to design the items for the scale, focus groups were set up with professionals dedicated to attending to individuals with intellectual disabilities. An initial scale of 20 items was constructed by consensus. A total of 1195 family members answered the questionnaire. In order to assess the structure of the scale, EFA recommended deleting 3 overlapping items. The final scale consisted of 17 items (α=95 and was composed of four main dimensions: self-determination (SD, social inclusion (SI, rights (RI and overall improvement (OI, which explained 74.83% of the variance. Finally, the consistency and validity were assessed. Convergent validity and discriminant validity were satisfactory. Moreover, CFA confirmed the structure of the scale. Main conclusions, limitations and practical implications are discussed.

  5. Epigenetic Etiology of Intellectual Disability.

    Science.gov (United States)

    Iwase, Shigeki; Bérubé, Nathalie G; Zhou, Zhaolan; Kasri, Nael Nadif; Battaglioli, Elena; Scandaglia, Marilyn; Barco, Angel

    2017-11-08

    Intellectual disability (ID) is a prevailing neurodevelopmental condition associated with impaired cognitive and adaptive behaviors. Many chromatin-modifying enzymes and other epigenetic regulators have been genetically associated with ID disorders (IDDs). Here we review how alterations in the function of histone modifiers, chromatin remodelers, and methyl-DNA binding proteins contribute to neurodevelopmental defects and altered brain plasticity. We also discuss how progress in human genetics has led to the generation of mouse models that unveil the molecular etiology of ID, and outline the direction in which this field is moving to identify therapeutic strategies for IDDs. Importantly, because the chromatin regulators linked to IDDs often target common downstream genes and cellular processes, the impact of research in individual syndromes goes well beyond each syndrome and can also contribute to the understanding and therapy of other IDDs. Furthermore, the investigation of these disorders helps us to understand the role of chromatin regulators in brain development, plasticity, and gene expression, thereby answering fundamental questions in neurobiology. Copyright © 2017 the authors 0270-6474/17/3710773-10$15.00/0.

  6. Disability impact and coping in mothers of children with intellectual disabilities and multiple disabilities.

    Science.gov (United States)

    Kishore, M Thomas

    2011-12-01

    Understanding the disability impact on parenting and caregiving is important for intervention. The present study was designed to understand the differences in perceived disability impact and related coping in mothers having children with intellectual disabilities alone compared to those having children with intellectual disabilities and additional disabilities. Accordingly, 30 mothers of children with intellectual disabilities and 30 mothers of children with intellectual and additional disabilities were assessed for disability impact and coping. Group differences for disability impact were present in specific domains but not overall. Despite variations in coping pattern, both positive and negative coping strategies were observed in both groups. The results may imply that the impact of intellectual disability is so pervasive that except in certain domains mothers may not perceive the further impact of additional disabilities. Positive coping does not rule out negative coping strategies. These findings have specific relevance to service delivery in a cultural context.

  7. A Descriptive Investigation of Dysphagia in Adults with Intellectual Disabilities

    Science.gov (United States)

    Chadwick, Darren D.; Jolliffe, J.

    2009-01-01

    Background: Dysphagia has rarely been investigated in adults with intellectual disabilities (ID) despite being a serious condition affecting health and quality of life. Method: This study collected information about 101 adults with ID, living in community settings, referred for an assessment of their eating and drinking. Ninety-nine people were…

  8. Spinal and Limb Abnormalities in Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Lin, Jin-Ding; Lin, Pei-Ying; Lin, Lan-Ping; Lai, Chia-Im; Leu, Yii-Rong; Yen, Chia-Feng; Hsu, Shang-Wei; Chu, Chi-Ming; Wu, Chia-Ling; Chu, Cordia M.

    2010-01-01

    There are not many studies pertaining to the spinal or limb abnormalities in people with intellectual disabilities, without a clear profile of these deformities of them, efforts to understand its characters and improve their quality of life will be impossible. Therefore, this paper aims to describe the prevalence and related factors of spinal and…

  9. Intellectual Disability in Children; a Systematic Review

    Directory of Open Access Journals (Sweden)

    Dasteh Goli N.*BSc

    2016-03-01

    Full Text Available Abstract Aims: Intellectual disability is a condition characterised by the inability of a person to undertake normal psychological activities. The purpose of this study was to systematically review the intellectual disability in children and discuss the implications of different environmental and genetic factors, which describe particular categories of intellectual disable cases. Information & Methods: This systematic review was performed in 2014 by searching the existing literature in PubMed database in the scope of “intellectual disability in children”. 38 articles written from 1987 to 2014 were selected and surveyed for review. Findings: The prevalence of ID in the general population is estimated to be approximately 1%. ID disorder is multi-causal, encompassing all factors that interfere with brain development and functioning. Causes usually are classified according to the time of the insult, as prenatal, perinatal, and postnatal or acquired. Some causes, such as environmental toxins or endocrine disorders, may act at multiple times. Others, such as genetic disorders, have different manifestations during postnatal development. The outcome for ID is variable and depends upon the aetiology, associated conditions, and environmental and social factors. The goals of management of ID are to strengthen areas of reduced function, minimize extensive deterioration in mental cognitive and adaptability, and lastly, to promote optimum or normal functioning of the individuals in their community. Conclusion: Prominent features of ID include significant failures in both intellectual functioning and adaptive behaviour, which comprises daily social and practical life skills, commencing earlier in life.

  10. Identifying classes of persons with mild intellectual disability or borderline intellectual functioning: a latent class analysis.

    Science.gov (United States)

    Nouwens, Peter J G; Lucas, Rosanne; Smulders, Nienke B M; Embregts, Petri J C M; van Nieuwenhuizen, Chijs

    2017-07-17

    Persons with mild intellectual disability or borderline intellectual functioning are often studied as a single group with similar characteristics. However, there are indications that differences exist within this population. Therefore, the aim of this study was to identify classes of persons with mild intellectual disability or borderline intellectual functioning and to examine whether these classes are related to individual and/or environmental characteristics. Latent class analysis was performed using file data of 250 eligible participants with a mean age of 26.1 (SD 13.8, range 3-70) years. Five distinct classes of persons with mild intellectual disability or borderline intellectual functioning were found. These classes significantly differed in individual and environmental characteristics. For example, persons with a mild intellectual disability experienced fewer problems than those with borderline intellectual disability. The identification of five classes implies that a differentiated approach is required towards persons with mild intellectual disability or borderline intellectual functioning.

  11. Psychopathology in Young People With Intellectual Disability

    Science.gov (United States)

    Einfeld, Stewart L.; Piccinin, Andrea M.; Mackinnon, Andrew; Hofer, Scott M.; Taffe, John; Gray, Kylie M.; Bontempo, Daniel E.; Hoffman, Lesa R.; Parmenter, Trevor; Tonge, Bruce J.

    2008-01-01

    Context Comorbid severe mental health problems complicating intellectual disability are a common and costly public health problem. Although these problems are known to begin in early childhood, little is known of how they evolve over time or whether they continue into adulthood. Objective To study the course of psychopathology in a representative population of children and adolescents with intellectual disability. Design, Setting, and Participants The participants of the Australian Child to Adult Development Study, an epidemiological cohort of 578 children and adolescents recruited in 1991 from health, education, and family agencies that provided services to children with intellectual disability aged 5 to 19.5 years in 6 rural and urban census regions in Australia, were followed up for 14 years with 4 time waves of data collection. Data were obtained from 507 participants, with 84% of wave 1 (1991-1992) participants being followed up at wave 4 (2002-2003). Main Outcome Measures The Developmental Behaviour Checklist (DBC), a validated measure of psychopathology in young people with intellectual disability, completed by parents or other caregivers. Changes over time in the Total Behaviour Problem Score and 5 subscale scores of the DBC scores were modeled using growth curve analysis. Results High initial levels of behavioral and emotional disturbance decreased only slowly over time, remaining high into young adulthood, declining by 1.05 per year on the DBC Total Behaviour Problem Score. Overall severity of psychopathology was similar across mild to severe ranges of intellectual disability (with mean Total Behaviour Problem Scores of approximately 44). Psychopathology decreased more in boys than girls over time (boys starting with scores 2.61 points higher at baseline and ending with scores 2.57 points lower at wave 4), and more so in participants with mild intellectual disability compared with those with severe or profound intellectual disability who diverged from

  12. Intellectual disability sport and Paralympic classification

    OpenAIRE

    Anna van Dijk; Klára Daďová; Irena Martínková

    2017-01-01

    Sometimes it might seem that elite disability sport, especially as represented by the Paralympic Movement, is only for athletes with an amputation, or a spinal cord injury, or cerebral palsied or blind athletes, rather than for athletes with an intellectual disability (ID). However, after we set out the various opportunities open to ID athletes, that offer different kinds of sporting engagement, we find interesting and alarming issues with respect to the elite competitive event offer for athl...

  13. Needs and Supports of People with Intellectual Disability and Their Families in Catalonia

    Science.gov (United States)

    Vilaseca, Rosa; Gràcia, Marta; Beltran, Francesc S.; Dalmau, Mariona; Alomar, Elisabeth; Adam-Alcocer, Ana Luisa; Simó-Pinatella, David

    2017-01-01

    Background: The study assesses the support needs of individuals with intellectual disability and their families in Catalonia. The present authors examine family quality of life (FQoL), identify the individual services required and assess families' perceptions of the extent to which their family member with intellectual disability and they…

  14. Staff Stress and Burnout in Intellectual Disability Services: Work Stress Theory and Its Application

    Science.gov (United States)

    Devereux, Jason; Hastings, Richard; Noone, Steve

    2009-01-01

    Background: Staff in intellectual disability services can be at risk of stress and burnout at work. Given that staff well-being has implications for the quality of life of the staff themselves and people with intellectual disabilities themselves, this is an important research and practical topic. In this paper, we review work stress theories that…

  15. Suicide behavior in persons with intellectual disability.

    Science.gov (United States)

    Merrick, Joav; Merrick, Efrat; Lunsky, Yona; Kandel, Isack

    2005-09-08

    Suicide is today in the Western world one of the leading causes of death and most people have had suicidal ideation at some time during their life. In the population of persons with intellectual disability some researchers have thought that impaired intellectual capacity could act as a buffer to suicidal behavior, but the fact is that the few studies conducted in that population contest this assumption and showed that the characteristics of suicidality in this population are very similar to persons without intellectual disability. This paper reviews the studies conducted and describe the symptomatology in this population. Professionals working with this population should therefore be aware of and assess for this behavior. Sadness or depression are symptoms that could indicate later suicidal behavior.

  16. Suicide Behavior in Persons with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Joav Merrick

    2005-01-01

    Full Text Available Suicide is today in the Western world one of the leading causes of death and most people have had suicidal ideation at some time during their life. In the population of persons with intellectual disability some researchers have thought that impaired intellectual capacity could act as a buffer to suicidal behavior, but the fact is that the few studies conducted in that population contest this assumption and showed that the characteristics of suicidality in this population are very similar to persons without intellectual disability. This paper reviews the studies conducted and describe the symptomatology in this population. Professionals working with this population should therefore be aware of and assess for this behavior. Sadness or depression are symptoms that could indicate later suicidal behavior.

  17. Best Practices in Intellectual Disability Identification

    Science.gov (United States)

    Fiorello, Catherine A.; Jenkins, Tiffany K.

    2018-01-01

    This article is an overview of identification of intellectual disabilities (ID), with a focus on meeting legal and ethical requirements when assessing children from culturally and linguistically diverse backgrounds and those living in poverty. Specific procedures and recommended instruments will be reviewed.

  18. Aging in Rare Intellectual Disability Syndromes

    Science.gov (United States)

    Dykens, Elisabeth M.

    2013-01-01

    This review highlights several methodological challenges involved in research on aging, health, and mortality in adults with rare intellectual disability syndromes. Few studies have been performed in this area, with research obstacles that include: the ascertainment of older adults with genetic versus clinical diagnoses; likelihood that adults…

  19. Perceptions of the Judiciary and Intellectual Disability.

    Science.gov (United States)

    Cockram, Judith; And Others

    1993-01-01

    Seventeen Supreme Court Judges, District Court Judges, and Magistrates in Western Australia were surveyed to examine perceptions concerning overrepresentation of individuals with intellectual disability in the criminal justice system. The judiciary felt these individuals had several characteristics that would disadvantage them in contacts with the…

  20. An inexorable rise in intellectual disability?

    NARCIS (Netherlands)

    Michiel Ras; Isolde Woittiez; Hetty van Kempen; Klarita Sadiraj

    2010-01-01

    Original title: Steeds meer verstandelijk gehandicapten? Demand for intellectual disability care has grown strongly in the Netherlands in recent years. Partly at the request of the Dutch Ministry of Health, Welfare and Sport, the Netherlands Institute for Social Research/SCP measured the

  1. Legal Rights & Intellectual Disability: A Short Guide.

    Science.gov (United States)

    Hall, Julia, Ed.; And Others

    The book examines actions that may be taken to redress wrongs illegally perpetrated against people with intellectual disabilities in New South Wales, Australia. Ten topic areas are addressed (sample subtopics in parentheses): protecting rights (complaints to government departments, use of the ombudsman); discrimination (legal aid); personal…

  2. Parent training support for intellectually disabled parents.

    Science.gov (United States)

    Coren, Esther; Hutchfield, Jemeela; Thomae, Manuela; Gustafsson, Carina

    2010-06-16

    Intellectual disability may impact on an individual's capacity to parent a child effectively. Research suggests that the number of intellectually disabled people with children is increasing. Children of parents with intellectual disabilities may be at increased risk of neglectful care which could lead to health, developmental and behavioural problems, or increased risk of intellectual disability.However, there is some indication that some parents with intellectual disabilities are able to provide adequate child care if they are given appropriate training and support to do so. To assess the effectiveness of parent training interventions to support the parenting of parents with intellectual disabilities We searched the following databases: Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library), MEDLINE, EMBASE, CINAHL, PsycINFO, ASSIA, Sociological Abstracts, Dissertation Abstracts International, MetaRegister of Controlled Trials, and ZETOC. Randomised controlled trials comparing parent training interventions for parents with intellectual disabilities with usual care or with a control group. Outcomes of interest were: the attainment of parenting skills specific to the intervention, safe home practices and the understanding of child health. Two review authors independently assessed risk of bias and undertook data extraction. Three trials met the inclusion criteria for this review but no meta-analysis was possible. One study reported improved maternal-child interaction following group parent training compared with the control group. The second study reported some improvements in parents knowledge of life threatening emergencies, ability to recognise dangers and identify precautions and smaller improvements in their ability to implement precautions, use medicines safely and recognise child illness and symptoms. The third study reported improvement in child care and safety skills following the intervention. There is some risk of bias in the

  3. Genetic testing of aetiology of intellectual disability in a dedicated physical healthcare outpatient clinic for adults with intellectual disability.

    Science.gov (United States)

    Wallace, R A

    2016-02-01

    No guidelines exist for assessment of aetiology of intellectual disability in adults with intellectual disability by adult physicians, although robust guidelines exist for paediatric populations. It was speculated that the paediatric guidelines would also be suitable for adults. In rural/regional setting with limited clinical genetics, to perform a quality assurance evaluation on genetics assessment of aetiology of developmental disability in adults attending a dedicated healthcare clinic for adults with intellectual disability, compared results with paediatric standards, speculates if these seem appropriate for adults and speculates on a role for clinical genetics services. Retrospective chart audit of eligible patients looking at genetic clinical assessment, tests selected (molecular karyotype, G banding, metabolics), and yields of positive results. The results were compared with the recommended paediatric guidelines. Of 117 eligible adult patients, ideal genetic history was incomplete for 40% of patients without Down syndrome because of physician cause and lack of information. The number of abnormal genetic results increased from 46% to 66%, mainly from the molecular karyotype, though not all may have been clinically relevant. The improved yield from this test was similar to that in paediatric studies. Use of G banding and metabolic testing could be refined. Improvement can be made in clinical genetic assessment, but results generally support use of molecular karyotyping as first tier testing of cause of unknown intellectual disability in adults, as in the case for paediatric populations. The study highlights a necessary complementary role for clinical geneticists to interpret abnormal results. © 2016 Royal Australasian College of Physicians.

  4. Intellectual disability and the prison setting

    Directory of Open Access Journals (Sweden)

    V. Tort

    2016-06-01

    Full Text Available Introduction: The prevalence of intellectual disability (ID in the prison setting has scarcely been studied. Although some approximations or estimates regarding people with intellectual disabilities have been performed in Spain, there is little in the way of reliable data. Objectives: 1 To determine the prevalence of ID in a sample population in the residential modules of a Spanish prison, 2 Obtain data on the prevalence of ID in prison psychiatric units and hospitals. Methods: 1 A TONI II test was performed on a sub-sample (n = 398 of a prevalence study in Spanish prisons33 to identify inmates with intellectual disabilities. 2 We reviewed the reports of the psychiatric department of Parc Sanitari Sant Joan de Deu to establish the diagnosis at discharge of patients with a primary diagnosis of intellectual disability 3 Data from the Directorate General of Prisons on the prevalence of ID in Prison Psychiatric Hospitals was reviewed. Results: The data obtained from the TONI II test found 3.77% of the study population has an IQ below 70, and 7.54 % has a borderline IQ rate. Assessment of penitentiary psychiatric hospitalization data showed these figures to be higher. Conclusions: The data from a Spanish prison population showed that ID levels were higher than those in the community, especially amongst prisoners requiring specialized psychiatric care. What is also evident is that adequate resources are required in prisons and in the community to provide better care for people with intellectual disabilities who are in the pathway of the criminal justice system.

  5. Comparison of Quality of Life Perceptions of Caregivers of Individuals with Intellectual Disabilities in the United States and the Czech Republic

    Science.gov (United States)

    Raver, Sharon A.; Michalek, Anne M.; Michalik, Jan; Valenta, Milan

    2010-01-01

    Caregivers of individuals with disabilities in the United States have been reported to experience additional hardships than families with typical children as they attempt to balance family and work (Parish, Rose, Grinstein-Weiss, Richman, & Andrews, 2008). In this study, 31 caregivers of individuals with intellectual disabilities from the…

  6. Psychometric qualities of a tetrad WAIS-III short form for use in individuals with mild to borderline intellectual disability.

    Science.gov (United States)

    van Duijvenbode, Neomi; Didden, Robert; van den Hazel, Teunis; Engels, Rutger C M E

    2016-01-01

    To investigate the reliability and validity of a Wechsler Abbreviated Scale of Intelligence-based Wechsler Adult Intelligence Scale - third edition (WAIS-III) short form (SF) in a sample of individuals with mild to borderline intellectual disability (MBID) (N = 117; M(IQ) = 71.34; SD(IQ) = 8.00, range: 52-85). A full WAIS-III was administered as a standard procedure in the diagnostic process. The results indicate an excellent reliability (r = 0.96) and a strong, positive correlation with the full WAIS-III (r = 0.89). The SF correctly identified ID in general and the correct IQ category more specifically in the majority of cases (97.4% and 86.3% of cases, respectively). In addition, 82.1% of the full scale IQ (FSIQ) estimates fell within the 95% confidence interval of the original score. We conclude that the SF is a reliable and valid measure to estimate FSIQ. It can be used in clinical and research settings when global estimates of intelligence are sufficient.

  7. From "Learning Disability to Intellectual Disability"--Perceptions of the Increasing Use of the Term "Intellectual Disability" in Learning Disability Policy, Research and Practice

    Science.gov (United States)

    Cluley, Victoria

    2018-01-01

    Background: The term "intellectual disability" is increasingly used to refer to people with learning disabilities in British learning disability policy, practice and research. This change is undoubtedly a reflection of the changing international context. The inclusion of the term "intellectual disability" has been particularly…

  8. The combined impact of social support and perceived stress on quality of life in adults with autism spectrum disorder and without intellectual disability.

    Science.gov (United States)

    Bishop-Fitzpatrick, Lauren; Mazefsky, Carla A; Eack, Shaun M

    2017-06-01

    Identifying modifiable correlates of good quality of life in adults with autism spectrum disorder is of paramount importance for intervention development as the population of adults with autism spectrum disorder increases. This study sought to examine social support and perceived stress as potential modifiable correlates of quality of life in adults with autism spectrum disorder. We hypothesized that adults with autism spectrum disorder without co-occurring intellectual disabilities ( N = 40; aged 18-44 years) would report lower levels of social support and quality of life than typical community volunteers who were matched for age, sex, and race ( N = 25). We additionally hypothesized that social support would buffer the effect of perceived stress on quality of life in adults with autism spectrum disorder. Results indicated that adults with autism spectrum disorder reported significantly lower levels of social support and quality of life than matched typical community volunteers. In addition, findings showed significant direct effects of social support and perceived stress on quality of life in adults with autism spectrum disorder. Social support did not buffer the effect of perceived stress on quality of life. Interventions that teach adults with autism spectrum disorder skills to help them better manage stress and cultivate supportive social relationships have the potential to improve quality of life.

  9. Effect of Perceived Stigmatisation on the Quality of Life among Ageing Female Family Carers: A Comparison of Carers of Adults with Intellectual Disability and Carers of Adults with Mental Illness

    Science.gov (United States)

    Chou, Y. C.; Pu, C. Y.; Lee, Y. C.; Lin, L. C.; Kroger, T.

    2009-01-01

    Background: Little account has been taken of quality of life (QoL) among family carers of adults with an intellectual disability (ID) and family carers of adults with a mental illness (MI), particularly the female ageing carers' perceived stigma. We explore whether there are differences in the significant predictors of female ageing family carers'…

  10. Evaluating the Quality of the Interaction between Persons with Profound Intellectual and Multiple Disabilities and Direct Support Staff: A Preliminary Application of Three Observation Scales from Parent-Infant Research

    Science.gov (United States)

    Hostyn, Ine; Petry, Katja; Lambrechts, Greet; Maes, Bea

    2011-01-01

    Background: Affective and reciprocal interactions with others are essential for persons with profound intellectual and multiple disabilities (PIMD), but it is a challenge to assess their quality. This study aimed to investigate the usefulness of instruments from parent-infant research to evaluate these interactions. Method: Eighteen videotaped…

  11. Inclusive Education for Students with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Janaki Balakrishnan

    2012-08-01

    Full Text Available This paper traces briefly the evolution of Inclusive Education for students with special education needs (SEN and discusses some significant challenges in its implementation. While the aim of Inclusive Education is to include all children with SEN in mainstream schools, there are many challenges that have to be overcome for their education to be meaningful. This paper focuses primarily on the inclusion of students with intellectual disability, since they are likely to be the largest number with special education needs in ‘inclusive’ schools. It offers the outline of a curriculum that may be derived from the mainstream one in use, and suggests a model that emphasises the replacement of age / grade placement, as is the present practice, with experience and maturity underpinning learning in persons with intellectual disability. The proposed model needs, of course, to be field-tested.doi 10.5463/DCID.v23i2.111

  12. Social support and intellectual disabilities: a comparison between social networks of adults with intellectual disability and those with physical disability.

    Science.gov (United States)

    Lippold, T; Burns, J

    2009-05-01

    Social support has been identified as a major protective factor in preventing mental health problems and also as a major contributor to quality of life. People with intellectual disabilities (ID) have been identified as having limited social support structures. Interventions have been focused on promoting their social presence and integration. However, previous studies have shown that this does not always lead to the formation of social relationships. To date few studies have looked at how having an ID leads to impoverished social networks. This study aimed to do this by contrasting the social relationships of people with physical disabilities (PD) and people with ID. Two groups of participants were recruited; 30 people with mild ID and 17 people with PD. Social and functional support networks were assessed, in addition to life experiences. Between and within group differences were then explored statistically. Adults with ID had more restricted social networks than PD, despite being involved in more activities. Social support for adults with ID was mainly provided by family and carers and few relationships with non-disabled people were identified. In contrast adults with PD had larger social networks than had been reported in the mainstream literature and had a balance of relationships with disabled and non-disabled people. The results suggest that there are additional processes attached to having an ID, which lead to continued impoverished lifestyles. The findings also endorse other work that suggests being physically integrated and engaged in a wide range of activities does not guarantee good social and emotional support.

  13. The Relation between Intellectual Functioning and Adaptive Behavior in the Diagnosis of Intellectual Disability

    Science.gov (United States)

    Tassé, Marc J.; Luckasson, Ruth; Schalock, Robert L.

    2016-01-01

    Intellectual disability originates during the developmental period and is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. In this article, we present a brief history of the diagnostic criteria of intellectual disability for both…

  14. Bereavement process of people with intellectual disability

    Directory of Open Access Journals (Sweden)

    Virginia MUÑIZ FERNÁNDEZ

    2018-03-01

    Full Text Available The main goal of this work is focused on detecting the support needs of people with intellectual disabilities during the bereavement process in order to guide about professional interventions and practices aimed to provide more adequate individualized support to their real needs. The sample consists of 93 adults with ID, with ages ranging from 21 to 72 years old (M = 49.9; SD = 11.79, who have suffered the loss of a significant person. The professionals who worked with them and knew them well completed two questionnaires: Staff Attitude Questionnaire (SAQ and Bereavement Needs Assessment (BNAT. Beside descriptive analyses, results were analyzed according to several variables (i.e., gender, age, level of intellectual disability, and level of dependency. Level of intellectual disability and level of dependency were the ones that resulted significant. In order to provide the best answer to their needs, good practices are suggested such as facilitating the understanding of loss, helping them express feelings and emotions, dealing with each case individually, and encouraging to continue education about death.

  15. National Disability Insurance Scheme, health, hospitals and adults with intellectual disability.

    Science.gov (United States)

    Wallace, Robyn A

    2018-03-01

    Preventable poor health outcomes for adults with intellectual disability in health settings have been known about for years. Subsequent analysis and the sorts of reasonable adjustments required in health and disability support settings to address these health gaps are well described, but have not really been embedded in practice in any significant way in either setting. As far as health is concerned, implementation of the National Disability Insurance Scheme (NDIS, the Scheme) affords an opportunity to recognise individual needs of people with intellectual disability to provide reasonable and necessary functional support for access to mainstream health services, to build capacity of mainstream health providers to supply services and to increase individual capacity to access services. Together these strands have potential to transform health outcomes. Success of the Scheme, however, rests on as yet incompletely defined operational interaction between NDIS and mainstream health services and inherently involves the disability sector. This interaction is especially relevant for adults with intellectual disability, known high users of hospitals and for whom hospital outcomes are particularly poor and preventable. Keys to better hospital outcomes are first, the receiving of quality person-centred healthcare from physicians and hospitals taking into account significance of intellectual disability and second, formulation of organised quality functional supports during hospitalisation. Achieving these require sophisticated engagement between consumers, the National Disability Insurance Agency, Commonwealth, State and Territory government leaders, senior hospital and disability administrators, NDIS service providers and clinicians and involves cross fertilisation of values, sharing of operational policies and procedures, determination of boundaries of fiscal responsibility for functional supports in hospital. © 2018 Royal Australasian College of Physicians.

  16. Psychodynamic Therapy and Intellectual Disabilities: Dealing with Challenging Behaviour.

    Science.gov (United States)

    Berry, Paul

    2003-01-01

    Four case studies concerning long-term psychodynamic treatment of German individuals with intellectual disabilities are presented: an aggressive young man with a mild intellectual disability; a young man with multiple disabilities with destructive behavior; a withdrawn young woman with self-destructive behavior; and a young man with autism with…

  17. Cell Phone Use by Adults with Intellectual Disabilities

    Science.gov (United States)

    Bryen, Diane Nelson; Carey, Allison; Friedman, Mark

    2007-01-01

    Although cell phone use has grown dramatically, there is a gap in cell phone access between people with disabilities and the general public. The importance of cell phone use among people with intellectual disabilities and studies about use of cell phones by adults with intellectual disabilities was described. Our goal was to determine the extent…

  18. The factors associated with care-related quality of life of adults with intellectual disabilities in England: implications for policy and practice.

    Science.gov (United States)

    Rand, Stacey; Malley, Juliette

    2017-09-01

    Over the last three decades, quality of life (QoL) has been advocated as an indicator of social care outcomes for adults with intellectual disabilities. In England, the Adult Social Care Survey (ASCS) is conducted annually by local authorities to contribute to the evidence base of the care-related QoL of people receiving publicly funded adult social care. This study explores relationships between QoL and non-care-related factors to identify relationships that could inform social care policy and practice. Cross-sectional data collected from 13,642 adults who participated in the 2011 and 2012 ASCS were analysed using regression to explore the factors associated with QoL measured using the Adult Social Care Outcomes Toolkit (ASCOT). Self-rated health, rating of the suitability of home design and anxiety/depression were all found to be significantly associated with ASCOT. Other individual and survey completion factors were also found to have weak significant relationships with ASCOT. The models also indicate that there was an increase in overall ASCOT-QoL and in five of the eight ASCOT domains (Personal comfort and cleanliness, Safety, Social participation, Occupation and Dignity) between 2011 and 2012. These findings demonstrate the potential value of QoL data for informing policy for people with intellectual disabilities by identifying key factors associated with QoL, the characteristics of those at risk of lower QoL, and QoL domains that could be targeted for improvement over time. Future research should establish causal relationships and explore the risk adjustment of scores to account for variation outside of the control of social care support. © 2016 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.

  19. The analysis of challenging relations : Influences on interactive behaviour of staff towards clients with intellectual disabilities

    NARCIS (Netherlands)

    Willems, A.P.A.M.; Embregts, P.J.C.M.; Bosman, A.M.T.; Hendriks, A.H.C.

    2014-01-01

    Background Relationships between support staff and clients with intellectual disability (ID) are important for quality of care, especially when dealing with challenging behaviour. Building upon an interpersonal model, this study investigates the influence of client challenging behaviour, staff

  20. Attitudes towards People with Disabilities--What Do People with Intellectual Disabilities Have to Say?

    Science.gov (United States)

    Corr McEvoy, Sandra; Keenan, Emer

    2014-01-01

    Attitudes towards people with intellectual disabilities have traditionally been very negative, resulting in people with intellectual disabilities being treated badly by other. This claim was explored by conducting focus groups with adults who have an intellectual disability to find out about their everyday experiences in different places and using…

  1. Exploring the self-concepts of persons with intellectual disabilities.

    Science.gov (United States)

    Li, Eria Ping-Ying; Tam, Alan Sing-Fai; Man, David Wai-Kwong

    2006-03-01

    This study explores the self-concepts of Hong Kong Chinese with intellectual disabilities. Face-to-face and individual interviews were conducted in Cantonese, using the Chinese version of the Adult Source of Self-Esteem Inventory (ASSEI) together with three open-ended questions to explore the participants' self-conceptions in different life domains. An opportunity sample of 135 young adults with intellectual disabilities was interviewed. The findings showed that the family self, the social self and achievement in school and work were the self-concept attributes most important to the participants. The participants of this study had a higher total self-concept than that of a comparison group of people without disabilities when the participants used the in-group social comparison to maintain positive self-perception. The importance of partnership with family, self-concept enhancement strategies and quality employment service are discussed in order to facilitate people with intellectual disabilities to develop more positive self-concepts and thus achieve better community integration.

  2. 'It's our everyday life' - The perspectives of persons with intellectual disabilities in Norway.

    Science.gov (United States)

    Witsø, Aud Elisabeth; Hauger, Brit

    2018-01-01

    This study illuminates how adults with intellectual disabilities understand and describe their everyday life and its shortcomings when it comes to equal rights in the context of Norwegian community living. An inclusive research design, including nine persons with mild intellectual disability, two university researchers and two intellectual disability nurses from the municipality, was undertaken. An inductive thematic analysis of data identified three key themes: everyday life - context, rhythm and structure, social participation and staff - an ambiguous part of everyday life. Results show that service provision had institutional qualities; participants experienced lack of information and reduced possibilities for social inclusion and community participation like everyone else. More attention on the role of policy development, support staff and leadership, in relation to facilitating an everyday life with more user involvement, social inclusion and community participation of people needing support, is essential. Participatory, appreciative, action and reflection in workshops for persons with intellectual disabilities and support staff represent a promising approach to promote the voices and interests of persons with intellectual disabilities. Accessible abstract This article tells you about the everyday life of people with intellectual disabilities living in Norway. Nine people with intellectual disabilities worked together with two university researchers and two intellectual disability nurses in the community, in workshops. The people with intellectual disabilities liked to have their own apartment and going to work every day. They said that they wanted more social participation with friends and more participation in activities in the community, just like everyone else. They wanted to be treated with more respect by their staff. All participants in the project saw great value in working together and some of them are working together in a new project about

  3. Consensus statement of the International Summit on Intellectual Disability and Dementia on valuing the perspectives of persons with intellectual disability.

    Science.gov (United States)

    Watchman, Karen; Janicki, Matthew P; Udell, Leslie; Hogan, Mary; Quinn, Sam; Beránková, Anna

    2018-01-01

    The International Summit on Intellectual Disability and Dementia covered a range of issues related to dementia and intellectual disability, including the dearth of personal reflections of persons with intellectual disability affected by dementia. This article reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from the Summit attendees and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Systemic recommendations included reinforcing the value of the involvement of persons with intellectual disability in (a) research alongside removing barriers to inclusion posed by institutional/ethics review boards, (b) planning groups that establish supports for dementia and (c) peer support. Practice recommendations included (a) valuing personal perspectives in decision-making, (b) enabling peer-to-peer support models, (c) supporting choice in community-dwelling arrangements and (d) broadening availability of materials for persons with intellectual disability that would promote understanding of dementia.

  4. Organising healthcare services for persons with an intellectual disability.

    Science.gov (United States)

    Balogh, Robert; McMorris, Carly A; Lunsky, Yona; Ouellette-Kuntz, Helene; Bourne, Laurie; Colantonio, Angela; Gonçalves-Bradley, Daniela C

    2016-04-11

    three assessed the costs associated with the interventions. None of the included studies reported data on the effect of organisational interventions on adverse events. Most studies were assessed as having low risk of bias.It is uncertain whether interventions that increase the frequency and intensity of delivery or outreach treatment decrease behavioural problems for persons with an intellectual disability (two and one trials respectively, very low certainty evidence). Behavioural problems were slightly decreased by community-based specialist behavioural therapy (one trial, low certainty evidence). Increasing the frequency and intensity of service delivery probably makes little or no difference to care giver burden (MD 0.03, 95% CI -3.48 to 3.54, two trials, moderate certainty evidence). It is uncertain whether outreach treatment makes any difference for care giver burden (one trial, very low certainty evidence). There was very limited evidence regarding costs, with low to very low certainty evidence for the different interventions. There is very limited evidence on the organisation of healthcare services for persons with an intellectual disability. There are currently no well-designed studies focusing on organising the health services of persons with an intellectual disability and concurrent physical problems. There are very few studies of organisational interventions targeting mental health needs and the results of those that were found need corroboration. There is an urgent need for high-quality health services research to identify optimal health services for persons with an intellectual disability and concurrent physical problem.

  5. Genetics Home Reference: alpha thalassemia X-linked intellectual disability syndrome

    Science.gov (United States)

    ... Alpha thalassemia X-linked intellectual disability syndrome Alpha thalassemia X-linked intellectual disability syndrome Printable PDF Open ... to view the expand/collapse boxes. Description Alpha thalassemia X-linked intellectual disability syndrome is an inherited ...

  6. Genetic Testing in Intellectual Disability Psychiatry: Opinions and Practices of UK Child and Intellectual Disability Psychiatrists

    Science.gov (United States)

    Wolfe, Kate; Stueber, Kerstin; McQuillin, Andrew; Jichi, Fatima; Patch, Christine; Flinter, Frances; Strydom, André; Bass, Nick

    2018-01-01

    Background: An increasing number of genetic causes of intellectual disabilities (ID) are identifiable by clinical genetic testing, offering the prospect of bespoke patient management. However, little is known about the practices of psychiatrists and their views on genetic testing. Method: We undertook an online survey of 215 psychiatrists, who…

  7. Staffs' documentation of participation for adults with profound intellectual disability or profound intellectual and multiple disabilities.

    Science.gov (United States)

    Talman, Lena; Gustafsson, Christine; Stier, Jonas; Wilder, Jenny

    2017-06-21

    This study investigated what areas of International Classification of Functioning, Disability and Health were documented in implementation plans for adults with profound intellectual disability or profound intellectual and multiple disabilities with focus on participation. A document analysis of 17 implementation plans was performed and International Classification of Functioning, Disability and Health was used as an analytic tool. One hundred and sixty-three different codes were identified, especially in the components Activities and participation and Environmental factors. Participation was most frequently coded in the chapters Community, social and civic life and Self-care. Overall, the results showed that focus in the implementation plans concerned Self-care and Community, social and civic life. The other life areas in Activities and participation were seldom, or not at all, documented. A deeper focus on participation in the implementation plans and all life areas in the component Activities and participation is needed. It is important that the documentation clearly shows what the adult wants, wishes, and likes in everyday life. It is also important to ensure that the job description for staff contains both life areas and individual preferences so that staff have the possibility to work to fulfill social and individual participation for the target group. Implications for rehabilitation There is a need for functioning working models to increase participation significantly for adults with profound intellectual disability or profound intellectual and multiple disabilities. For these adults, participation is achieved through the assistance of others and support and services carried out must be documented in an implementation plan. The International Classification of Functioning, Disability and Health can be used to support staff and ensure that information about the most important factors in an individual's functioning in their environment is not omitted in

  8. The Concept of Quality of Life and Its Role in Enhancing Human Rights in the Field of Intellectual Disability

    Science.gov (United States)

    Verdugo, M. A.; Navas, P.; Gomez, L. E.; Schalock, R. L.

    2012-01-01

    Background: The changed societal views of persons with disabilities are reflected in the 2006 United Nations "Convention on the Rights of Persons with Disabilities". However, what is not specified in the Convention is how to operationalise and measure the Articles composing the Convention, and how to use that information to further…

  9. Vision, spatial cognition and intellectual disability.

    Science.gov (United States)

    Giuliani, Fabienne; Schenk, Françoise

    2015-02-01

    Vision is the most synthetic sensory channel and it provides specific information about the relative position of distant landmarks during visual exploration. In this paper we propose that visual exploration, as assessed by the recording of eye movements, offers an original method to analyze spatial cognition and to reveal alternative adaptation strategies in people with intellectual disabilities (ID). Our general assumption is that eye movement exploration may simultaneously reveal whether, why, and how, compensatory strategies point to specific difficulties related to neurological symptoms. An understanding of these strategies will also help in the development of optimal rehabilitation procedures. Copyright © 2014 Elsevier Ltd. All rights reserved.

  10. Aerobic capacity of adults with intellectual disabilities

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    Krystyna Gawlik

    2016-12-01

    1. A large sample of the study population (30% female, 46,3% male showed very low levels of aerobic capacity. 2. Our investigations did not demonstrate a relationship between physical fitness and age or the degree of intellectual disability. Gender turned out to be a differentiating factor but only for the absolute PWC170 and VO2max. 3. The level of physical fitness was significantly related to somatic parameters including body mass, waist and hips circumference, percentage of body fat, BMI and WHR.

  11. Community Involvement of Young Adults with Intellectual Disabilities: Their Experiences and Perspectives on Inclusion.

    Science.gov (United States)

    Hall, Sarah A

    2017-09-01

    Inclusion in the community is essential to enhancing a person's quality of life. Although people with intellectual disabilities have a desire to be more involved in activities, they experience barriers that limit their inclusion. The purpose of this study was to describe the community involvement of young adults with intellectual disability. I interviewed fourteen young adults with intellectual disability to explore their involvement in work, recreation and leisure activities. Four themes emerged from the data: vocational endeavours, leisure pursuits, social inclusion and supports. The contexts of their experiences either facilitated or hindered their community involvement. The community involvement of young adults with intellectual disability varies depending on the opportunities and supports available to them. Their inclusion in the community may be enhanced by additional transportation options, continuing education in vocational and social skills, personalized guidance from group members and environments that are welcoming to people with disabilities. © 2016 John Wiley & Sons Ltd.

  12. Resilience and professional quality of life in staff working with people with intellectual disabilities and offending behavior in community based and institutional settings

    Directory of Open Access Journals (Sweden)

    Erik Søndenaa

    2013-01-01

    Full Text Available Staff in forensic services for people with intellectual disabilities (ID are expected to deal with a wide range of emotional challenges when providing care. The potential impact of this demanding work has not been systematically explored previously. This article explores the professional quality of life (QoL and the resilience (hardiness of the staff in this setting. The Professional QoL questionnaire and the Disposional Resilience Scale were completed by staff (n=85, 80% response rate in the Norwegian forensic service for ID offenders. Responses from staff working in institutional settings were compared to those from staff in local community services. Staff in the local community services had higher resilience scores compared to the staff in the institutional setting, (t=2.19; P<0.05. However in the other QoL and resilience domains there were no differences between the staff in the two settings. The greater sense of resilient control among community staff may be a function of both the number of service users they work with and the institutional demands they face. Even though these participants worked with relatively high risk clients, they did not report significantly impaired quality of life compared to other occupations.

  13. Intellectual disability sport and Paralympic classification

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    Anna van Dijk

    2017-06-01

    Full Text Available Sometimes it might seem that elite disability sport, especially as represented by the Paralympic Movement, is only for athletes with an amputation, or a spinal cord injury, or cerebral palsied or blind athletes, rather than for athletes with an intellectual disability (ID. However, after we set out the various opportunities open to ID athletes, that offer different kinds of sporting engagement, we find interesting and alarming issues with respect to the elite competitive event offer for athletes with ID. In this paper, we discuss the following: the problem of inclusion, some concerns that arise in the classification of paralympic athletes such as self-declaration and eligibility, the open nature of ID sports competition, and the sport offer available for these athletes.

  14. Mortality Among Adults With Intellectual Disability in England: Comparisons With the General Population

    Science.gov (United States)

    Hosking, Fay J.; Shah, Sunil M.; Harris, Tess; DeWilde, Stephen; Beighton, Carole; Cook, Derek G.

    2016-01-01

    Objectives. To describe mortality among adults with intellectual disability in England in comparison with the general population. Methods. We conducted a cohort study from 2009 to 2013 using data from 343 general practices. Adults with intellectual disability (n = 16 666; 656 deaths) were compared with age-, gender-, and practice-matched controls (n = 113 562; 1358 deaths). Results. Adults with intellectual disability had higher mortality rates than controls (hazard ratio [HR] = 3.6; 95% confidence interval [CI] = 3.3, 3.9). This risk remained high after adjustment for comorbidity, smoking, and deprivation (HR = 3.1; 95% CI = 2.7, 3.4); it was even higher among adults with intellectual disability and Down syndrome or epilepsy. A total of 37.0% of all deaths among adults with intellectual disability were classified as being amenable to health care intervention, compared with 22.5% in the general population (HR = 5.9; 95% CI = 5.1, 6.8). Conclusions. Mortality among adults with intellectual disability is markedly elevated in comparison with the general population, with more than a third of deaths potentially amenable to health care interventions. This mortality disparity suggests the need to improve access to, and quality of, health care among people with intellectual disability. PMID:27310347

  15. The effects of rehabilitation on intellectually-disabled people – a systematic review

    Directory of Open Access Journals (Sweden)

    Ernest J. Sechoaro

    2014-08-01

    Objective: To synthesise critically and summarise the best available evidence of the effects of rehabilitation on intellectually-disabled people. Method: Literature searches of different electronic databases and manual searches were conducted using selected keywords. Studies on the effects of rehabilitation on intellectually-disabled people were selected systematically, appraised critically for methodological quality and summarised. Results: Rehabilitation interventions indicated good outcomes with regard to intellectually-disabled people. Findings showed that people with mild to moderate intellectual disabilities improved in terms of activities of daily living (ADL after rehabilitation. Improvement was noted in ADL, self-care skills, communication skills and cognitive achievements. Conclusion: Findings demonstrated positive rehabilitation effects on intellectually-disabled people. This study contributes to the comprehensive nursing care of intellectually-disabled people by endorsement of the effectiveness of rehabilitation in terms of ADL, self-care skills, communication skills and cognitive achievements. The collected evidence of this study may contribute to the education of more effective nurse practitioners involved in the daily care and rehabilitation of intellectually-disabled people.

  16. Teaching Reading for Students with Intellectual Disabilities: A Systematic Review

    Science.gov (United States)

    Alnahdi, Ghaleb Hamad

    2015-01-01

    A systematic review of the literature related to instructional strategies to improve reading skills for students with intellectual disabilities was conducted. Studies reviewed were within three categories; early reading approaches, comprehensive approaches, and one method approach. It was concluded that students with intellectual disabilities are…

  17. Students' Attitudes towards Individuals with an Intellectual Disability

    Science.gov (United States)

    Patel, Meera; Rose, John

    2014-01-01

    The aim of the study was to investigate attitudes held by a British student population towards individuals with an intellectual disability. Students participated in focus groups addressing their attitudes, behaviours and perceptions of individuals with an intellectual disability. Thematic analysis was the method used to identify emergent themes.…

  18. Intellectual Disability and Space: Critical Narratives of Exclusion

    Science.gov (United States)

    Gabel, Susan L.; Cohen, Carie J.; Kotel, Kathleen; Pearson, Holly

    2013-01-01

    The language of intellectual disability is rife with spatial terms. Students labeled with intellectual disability are "placed in" special education where they may be "self-contained," "segregated," "excluded," or "included." Conversations ensue about where to seat them, "next" to whom, and at what distance "from" the teacher and other students. In…

  19. Overweight and Obesity in Older People with Intellectual Disability

    Science.gov (United States)

    de Winter, C. F.; Bastiaanse, L. P.; Hilgenkamp, T. I. M.; Evenhuis, H. M.; Echteld, M. A.

    2012-01-01

    Overweight and obesity are major health problems associated with increased cardiovascular disease risk, which is not sufficiently studied in people with intellectual disability yet. The present study was part of the Healthy Ageing in Intellectual Disability (HA-ID) study. The aim of this study was to establish (1) the prevalence of overweight,…

  20. Physical Fitness and Fatness in Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Salaun, Laureline; Berthouze-Aranda, Sophie E.

    2012-01-01

    Background: This study investigated health-related fitness in adolescents with intellectual disabilities and analysed the various performances in physical fitness tests according to degrees of obesity. Materials and Methods: Eighty-seven French intellectual disabilities adolescents (14.24 [plus or minus] 1.48 years) performed the EUROFIT physical…

  1. Measurement of Mood in Adolescents with Intellectual Disability

    Science.gov (United States)

    Argus, Geoffrey R.; Terry, Peter C.; Bramston, Paul; Dinsdale, Sarah L.

    2004-01-01

    To date, there has been limited research into mood responses among adolescents with intellectual disability. One reason for this is the absence of a reliable and valid measure for the assessment of mood among this population. The present study evaluated such a measure among a sample of 135 adolescents with mild intellectual disability. Results…

  2. Qualitative Study of Malnutrition in People with Intellectual Disabilities

    Science.gov (United States)

    Franssen, Janine J. L.; Maaskant, Marian A.; van Schrojenstein Lantman-de Valk, Henny M. J.

    2011-01-01

    The prevalence of underweight status is relatively high in persons with intellectual disabilities. However, it is not clear whether this is due to malnourishment. The authors sought to examine the awareness and knowledge of physicians, dieticians, and direct care staff regarding malnutrition in people with intellectual disabilities. They also…

  3. An Audit of the Irish National Intellectual Disability Database

    Science.gov (United States)

    Dodd, Philip; Craig, Sarah; Kelly, Fionnola; Guerin, Suzanne

    2010-01-01

    This study describes a national data audit of the National Intellectual Disability Database (NIDD). The NIDD is a national information system for intellectual disability (ID) for Ireland. The purpose of this audit was to assess the overall accuracy of information contained on the NIDD, as well as collecting qualitative information to support the…

  4. Stressful Social Interactions Experienced by Adults with Mild Intellectual Disability

    Science.gov (United States)

    Hartley, Sigan L.; MacLean, William E., Jr.

    2009-01-01

    Adults with intellectual disability are vulnerable to stressful social interactions. We determined frequency and severity of various stressful social interactions, identified the social partners in these interactions, and examined the specific interpersonal skill difficulties of 114 adults with mild intellectual disability. Participants'…

  5. Age at Death in Individuals with Intellectual Disabilities.

    Science.gov (United States)

    Arvio, Maria; Salokivi, Tommi; Bjelogrlic-Laakso, Nina

    2017-07-01

    We aimed to ascertain the average age at death (AD) in the intellectual disability population for each gender and compare them to those of the general population during 1970-2012. By analysing medical records, we calculated the ADs of all deceased clients (N = 1236) of two district organizations responsible for intellectual disability services. Statistics Finland's database generated data regarding ADs of all inhabitants who had died after having resided in same district. During the follow-up, average ADs for the intellectual disability population and general population increased, and simultaneously the AD difference between these populations decreased. In the 2000s, the AD difference between the intellectual disability population and the whole population was 22 years for men (95% CI: -24 to -20) and 30 years for women (95% CI: -33 to -27). In 2000s, the mean AD of those with mild-to-moderate intellectual disability (IQ 50-69) for women and men was 56 (SD17) and 54 (SD18), and those with severe to profound intellectual disability (IQ<50), 44 (SD23) and 43 (SD21). Intellectual disability is still a considerable risk factor for early death. Among the intellectual disability population, unlike in general population, the lifespans of women and men are equal. © 2016 John Wiley & Sons Ltd.

  6. Teaching Students with Intellectual Disabilities: Constructivism or Behaviorism?

    Science.gov (United States)

    Algahtani, Faris

    2017-01-01

    Many teaching strategies have been postulated over the past years by various scholars in an effort to enhance the education system among students with intellectual disabilities. There is much debate on the application of constructivist and behaviorist perspectives for teaching students with intellectual disabilities as addressed in this paper.…

  7. Effectiveness of Speech Therapy in Adults with Intellectual Disabilities

    Science.gov (United States)

    Terband, Hayo; Coppens-Hofman, Marjolein C.; Reffeltrath, Maaike; Maassen, Ben A. M.

    2018-01-01

    Background: This study investigated the effect of speech therapy in a heterogeneous group of adults with intellectual disability. Method: Thirty-six adults with mild and moderate intellectual disabilities (IQs 40-70; age 18-40 years) with reported poor speech intelligibility received tailored training in articulation and listening skills delivered…

  8. Parenting Training for Intellectually Disabled Parents: A Cochrane Systematic Review

    Science.gov (United States)

    Coren, Esther; Thomae, Manuela; Hutchfield, Jemeela

    2011-01-01

    Objectives: This article presents a Cochrane/Campbell systematic review of the evidence on the effect of parent training to support the parenting of parents with intellectual disabilities. Method: Randomized controlled trials (RCTs) comparing parent training interventions for parents with intellectual disability with usual care or with a control…

  9. What Is Right? Ethics in Intellectual Disabilities Research

    Science.gov (United States)

    McDonald, Katherine E.; Kidney, Colleen A.

    2012-01-01

    There are important benefits to including adults with intellectual disabilities in research. Calls for their increased participation in research co-occur with notable discussion about how to conduct ethically strong research with adults with intellectual disabilities, a population widely considered vulnerable in the context of research. The…

  10. The Siblings Relationship of Adolescents with and without Intellectual Disabilities

    Science.gov (United States)

    Begum, Gazi; Blacher, Jan

    2011-01-01

    The sibling relationship of adolescents with and without intellectual disabilities was examined. Participants were 70 sibling dyads--each dyad was comprised of one 12-year old adolescent with (N = 23) or without intellectual disabilities (N = 47). Sibling relationships, behavior problems, and social skills were assessed using mother reports.…

  11. Expanding the genetic heterogeneity of intellectual disability.

    Science.gov (United States)

    Anazi, Shams; Maddirevula, Sateesh; Salpietro, Vincenzo; Asi, Yasmine T; Alsahli, Saud; Alhashem, Amal; Shamseldin, Hanan E; AlZahrani, Fatema; Patel, Nisha; Ibrahim, Niema; Abdulwahab, Firdous M; Hashem, Mais; Alhashmi, Nadia; Al Murshedi, Fathiya; Al Kindy, Adila; Alshaer, Ahmad; Rumayyan, Ahmed; Al Tala, Saeed; Kurdi, Wesam; Alsaman, Abdulaziz; Alasmari, Ali; Banu, Selina; Sultan, Tipu; Saleh, Mohammed M; Alkuraya, Hisham; Salih, Mustafa A; Aldhalaan, Hesham; Ben-Omran, Tawfeg; Al Musafri, Fatima; Ali, Rehab; Suleiman, Jehan; Tabarki, Brahim; El-Hattab, Ayman W; Bupp, Caleb; Alfadhel, Majid; Al Tassan, Nada; Monies, Dorota; Arold, Stefan T; Abouelhoda, Mohamed; Lashley, Tammaryn; Houlden, Henry; Faqeih, Eissa; Alkuraya, Fowzan S

    2017-11-01

    Intellectual disability (ID) is a common morbid condition with a wide range of etiologies. The list of monogenic forms of ID has increased rapidly in recent years thanks to the implementation of genomic sequencing techniques. In this study, we describe the phenotypic and genetic findings of 68 families (105 patients) all with novel ID-related variants. In addition to established ID genes, including ones for which we describe unusual mutational mechanism, some of these variants represent the first confirmatory disease-gene links following previous reports (TRAK1, GTF3C3, SPTBN4 and NKX6-2), some of which were based on single families. Furthermore, we describe novel variants in 14 genes that we propose as novel candidates (ANKHD1, ASTN2, ATP13A1, FMO4, MADD, MFSD11, NCKAP1, NFASC, PCDHGA10, PPP1R21, SLC12A2, SLK, STK32C and ZFAT). We highlight MADD and PCDHGA10 as particularly compelling candidates in which we identified biallelic likely deleterious variants in two independent ID families each. We also highlight NCKAP1 as another compelling candidate in a large family with autosomal dominant mild intellectual disability that fully segregates with a heterozygous truncating variant. The candidacy of NCKAP1 is further supported by its biological function, and our demonstration of relevant expression in human brain. Our study expands the locus and allelic heterogeneity of ID and demonstrates the power of positional mapping to reveal unusual mutational mechanisms.

  12. Expanding the genetic heterogeneity of intellectual disability

    KAUST Repository

    Anazi, Shams

    2017-09-22

    Intellectual disability (ID) is a common morbid condition with a wide range of etiologies. The list of monogenic forms of ID has increased rapidly in recent years thanks to the implementation of genomic sequencing techniques. In this study, we describe the phenotypic and genetic findings of 68 families (105 patients) all with novel ID-related variants. In addition to established ID genes, including ones for which we describe unusual mutational mechanism, some of these variants represent the first confirmatory disease-gene links following previous reports (TRAK1, GTF3C3, SPTBN4 and NKX6-2), some of which were based on single families. Furthermore, we describe novel variants in 14 genes that we propose as novel candidates (ANKHD1, ASTN2, ATP13A1, FMO4, MADD, MFSD11, NCKAP1, NFASC, PCDHGA10, PPP1R21, SLC12A2, SLK, STK32C and ZFAT). We highlight MADD and PCDHGA10 as particularly compelling candidates in which we identified biallelic likely deleterious variants in two independent ID families each. We also highlight NCKAP1 as another compelling candidate in a large family with autosomal dominant mild intellectual disability that fully segregates with a heterozygous truncating variant. The candidacy of NCKAP1 is further supported by its biological function, and our demonstration of relevant expression in human brain. Our study expands the locus and allelic heterogeneity of ID and demonstrates the power of positional mapping to reveal unusual mutational mechanisms.

  13. Expanding the genetic heterogeneity of intellectual disability

    KAUST Repository

    Anazi, Shams; Maddirevula, Sateesh; Salpietro, Vincenzo; Asi, Yasmine T.; Alsahli, Saud; Alhashem, Amal; Shamseldin, Hanan E.; AlZahrani, Fatema; Patel, Nisha; Ibrahim, Niema; Abdulwahab, Firdous M.; Hashem, Mais; Alhashmi, Nadia; Al Murshedi, Fathiya; Al Kindy, Adila; Alshaer, Ahmad; Rumayyan, Ahmed; Al Tala, Saeed; Kurdi, Wesam; Alsaman, Abdulaziz; Alasmari, Ali; Banu, Selina; Sultan, Tipu; Saleh, Mohammed M.; Alkuraya, Hisham; Salih, Mustafa A.; Aldhalaan, Hesham; Ben-Omran, Tawfeg; Al Musafri, Fatima; Ali, Rehab; Suleiman, Jehan; Tabarki, Brahim; El-Hattab, Ayman W.; Bupp, Caleb; Alfadhel, Majid; Al Tassan, Nada; Monies, Dorota; Arold, Stefan T.; Abouelhoda, Mohamed; Lashley, Tammaryn; Houlden, Henry; Faqeih, Eissa; Alkuraya, Fowzan S.

    2017-01-01

    Intellectual disability (ID) is a common morbid condition with a wide range of etiologies. The list of monogenic forms of ID has increased rapidly in recent years thanks to the implementation of genomic sequencing techniques. In this study, we describe the phenotypic and genetic findings of 68 families (105 patients) all with novel ID-related variants. In addition to established ID genes, including ones for which we describe unusual mutational mechanism, some of these variants represent the first confirmatory disease-gene links following previous reports (TRAK1, GTF3C3, SPTBN4 and NKX6-2), some of which were based on single families. Furthermore, we describe novel variants in 14 genes that we propose as novel candidates (ANKHD1, ASTN2, ATP13A1, FMO4, MADD, MFSD11, NCKAP1, NFASC, PCDHGA10, PPP1R21, SLC12A2, SLK, STK32C and ZFAT). We highlight MADD and PCDHGA10 as particularly compelling candidates in which we identified biallelic likely deleterious variants in two independent ID families each. We also highlight NCKAP1 as another compelling candidate in a large family with autosomal dominant mild intellectual disability that fully segregates with a heterozygous truncating variant. The candidacy of NCKAP1 is further supported by its biological function, and our demonstration of relevant expression in human brain. Our study expands the locus and allelic heterogeneity of ID and demonstrates the power of positional mapping to reveal unusual mutational mechanisms.

  14. New innovations: therapeutic opportunities for intellectual disabilities.

    Science.gov (United States)

    Picker, Jonathan D; Walsh, Christopher A

    2013-09-01

    Intellectual disability is common and is associated with significant morbidity. Until the latter half of the 20th century, there were no efficacious treatments. Following initial breakthroughs associated with newborn screening and metabolic corrections, little progress was made until recently. With improved understanding of genetic and cellular mechanisms, novel treatment options are beginning to appear for a number of specific conditions. Fragile X and tuberous sclerosis offer paradigms for the development of targeted therapeutics, but advances in understanding of other disorders such as Down syndrome and Rett syndrome, for example, are also resulting in promising treatment directions. In addition, better understanding of the underlying neurobiology is leading to novel developments in enzyme replacement for storage disorders and adjunctive therapies for metabolic disorders, as well as potentially more generalizable approaches that target dysfunctional cell regulation via RNA and chromatin. Physiologic therapies, including deep brain stimulation and transcranial magnetic stimulation, offer yet another direction to enhance cognitive functioning. Current options and evolving opportunities for the intellectually disabled are reviewed and exemplified. Copyright © 2013 American Neurological Association.

  15. KEMANDIRIAN ANAK INTELLECTUAL DISABILITY TERKAIT DENGAN TINGKAT KEMATANGAN SOSIAL

    OpenAIRE

    Muh Khoironi Fadli; Dewi Retno Pamungkas; Retno Sumiyarini

    2014-01-01

    Background:Intellectual disability is disorder of intellectual function that is significantly below averagewith various deficits in adaptive function, such as taking care of oneself or occupational activities thatemerge before the age of 18 years old. One characteristic of intellectuallydisabled children in adaptivefunction is social maturity disorder. Children with intellectual disability haveproblem in social maturityandlimitation in fulfilling needs in daily activities.Objective:To identif...

  16. BEHAVIORAL PROBLEMS IN CHILDREN WITH MILD AND MODERATE INTELLECTUAL DISABILITY

    Directory of Open Access Journals (Sweden)

    Vesna KOSTIKJ-IVANOVIKJ

    2009-06-01

    Full Text Available Large number of children with intellectual disabilities encounters behavioral problems or show disharmonic behavior within the family, at school and in the community. Researches show that 30-50% of persons with intellectual disabilities have some behavioral problems. The behavior of children with intellectual disabilities depends on many factors: age of the child, level of intellectual disability, cognitive potentials, level of psycho-physical development, differentiation of emotions, communicative skills, social status and conditions of the environment (in the family and the wider community where the child lives. The influence of some of these factors has been analyzed by this research. There are many ins truments (questionnaires, scales that evaluate behavior of persons with intellectual disabilities, and reveal problems that these persons have in their psychosocial development and social life. This research used the AAMD Adaptive behavior Scale (part II and Scale for evaluating behavior of the child in school by authors Bojanin, Savanovikj.

  17. Lived experiences of student nurses caring for intellectually disabled people in a public psychiatric institution

    Directory of Open Access Journals (Sweden)

    Annie Temane

    2016-06-01

    Full Text Available Background: Caring for intellectually disabled people can be demanding for student nurses who are novices in the nursing profession. To ensure that quality nursing care is provided, student nurses should have an understanding of and a positive attitude towards intellectually disabled people. Nursing intellectually disabled people can be a challenge for the student nurses. Therefore, student nurses need to be able to deal with challenges of caring for intellectually disabled people. Objective: This article aims to explore and describe experiences of student nurses caring for intellectually disabled people in a public psychiatric institution. Design and method: A qualitative, exploratory, descriptive and contextual research design was used. Data were collected through individual in-depth phenomenological interviews, naïve sketches and field notes. Thematic analysis was utilised to analyse the collected data. Results were contextualised within the literature and measures to ensure trustworthiness were adhered to. Ethical principals were also applied throughout the research process. Results: Five themes emerged from the data. Student nurses experienced a profoundly unsettling impact on their whole being when caring for intellectually disabled people; they developed a sense of compassion and a new way of looking at life, and experienced a need for certain physical, mental and spiritual needs to be met. Conclusion: From the results, it is evident that student nurses were challenged in caring for intellectually disabled people. However, they developed a sense of awareness that intellectually disabled people have a need to be cared for like any other person. Keywords: experiences, student nurses, caring, intellectually disabled people, public psychiatric institution

  18. Autonomy Support in People with Mild-to-Borderline Intellectual Disability: Testing the Health Care Climate Questionnaire-Intellectual Disability

    Science.gov (United States)

    Frielink, Noud; Schuengel, Carlo; Embregts, Petri J. C. M.

    2018-01-01

    Background: Autonomy support in people with intellectual disability (ID) is an important yet understudied topic. Psychometrically sound instruments are lacking. This study tested the factor structure and reliability of an instrument for assessing the extent people with intellectual disability perceive their support staff as autonomy supportive.…

  19. Epilepsy in Children with Intellectual Disability in Bosnia and Herzegovina: Effects of Sex, Level and Etiology of Intellectual Disability

    Science.gov (United States)

    Memisevic, Haris; Sinanovic, Osman

    2009-01-01

    The purpose of this study was to examine the occurrence of epilepsy in children with intellectual disability. An additional goal was to determine if there were statistical differences in the occurrence of epilepsy related to the sex, level and etiology of intellectual disability of children. The sample consisted of 167 children with intellectual…

  20. Everyday Life of Young Adults with Intellectual Disabilities: Inclusionary and Exclusionary Processes among Young Adults of Parents with Intellectual Disability

    Science.gov (United States)

    Starke, Mikaela

    2013-01-01

    Ten young adults with an intellectual disability whose parents, too, have an intellectual disability were interviewed and completed questionnaires for this exploratory study aimed at charting their experiences of everyday life. Most of the participants reported high life satisfaction, especially with the domains of friends, leisure time, and…

  1. Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

    Science.gov (United States)

    2012-01-01

    When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability. PMID:28729979

  2. Friendships and Intimate Relationships among People with Intellectual Disabilities: A Thematic Synthesis.

    Science.gov (United States)

    Fulford, Casey; Cobigo, Virginie

    2018-01-01

    The purpose of this thematic synthesis was to review qualitative studies on perspectives of persons with intellectual disabilities regarding friendships and intimate relationships. A literature search was conducted, including studies published between 2004 and 2014, involving participants 14 years of age or older, who had intellectual disabilities, and participated in focus groups or interviews. Eighteen studies were included. Three master themes were identified: (i) How do I know someone is my friend? (ii) How do I know someone is my boyfriend or girlfriend? and (iii) What helps and hinders relationships? Understanding how people with intellectual disabilities describe relationships, and being aware of factors that support and impede relationships, will aid stakeholders in developing training, policies, programmes and services. Knowledge translation of research that focuses on strategies aimed at supporting relationships is crucial to affect change in applied settings and improve quality of life for persons with intellectual disabilities. © 2016 John Wiley & Sons Ltd.

  3. Is There Really a Difference? Distinguishing Mild Intellectual Disability from "Similar" Disability Categories

    Science.gov (United States)

    Bouck, Emily C.; Satsangi, Rajiv

    2015-01-01

    Students with mild intellectual disability generally garner less individual attention in research, as they are often aggregated with students with moderate and severe intellectual disability or students with other high incidence disabilities. This study used the National Longitudinal Transition Study-2 (NLTS2) to look at the personal…

  4. Identifying the key concerns of Irish persons with intellectual disability.

    Science.gov (United States)

    García Iriarte, Edurne; O'Brien, Patricia; McConkey, Roy; Wolfe, Marie; O'Doherty, Siobhain

    2014-11-01

    Internationally, people with intellectual disability are socially marginalized, and their rights under the United Nations Convention for the Rights of Persons with Disabilities (CRPD) are often ignored. This paper aims to define the key concerns of adults with an intellectual disability in relation to their participation in society using an inclusive research strategy for both data gathering and data analysis. A national study involving 23 focus groups and 168 persons was conducted on the island of Ireland with people with intellectual disability as co-facilitators. A thematic content analysis was undertaken of the verbatim transcripts initially by university co-researchers, and 19 themes were identified. Co-researchers with intellectual disability joined in identifying the eight core themes. These were as follows: living options, employment, relationships, citizenship, leisure time, money management, self-advocacy, and communication. The concerns are discussed within the framework of the CRPD, and implications for transforming service policy are drawn. Why we did the research In many countries, people with intellectual disability have difficulties doing things other people without disabilities do, for example to study, to get a job or to live independently. They also find that their rights are not respected under the Convention on the Rights of Persons with Disabilities (the Convention). We did this study to Learn what are the main issues for adults with intellectual disability in Ireland. Do research with people with intellectual disability. How we did the research People with intellectual disability and their supporters worked with university researchers to plan and do the research. We met with people in groups and 168 people told us about things important to them. What we found out We found that there were very important things that people talked about in the groups. We chose the most important: living options, employment, relationships, rights, leisure, money

  5. Genetics of intellectual disability in consanguineous families.

    Science.gov (United States)

    Hu, Hao; Kahrizi, Kimia; Musante, Luciana; Fattahi, Zohreh; Herwig, Ralf; Hosseini, Masoumeh; Oppitz, Cornelia; Abedini, Seyedeh Sedigheh; Suckow, Vanessa; Larti, Farzaneh; Beheshtian, Maryam; Lipkowitz, Bettina; Akhtarkhavari, Tara; Mehvari, Sepideh; Otto, Sabine; Mohseni, Marzieh; Arzhangi, Sanaz; Jamali, Payman; Mojahedi, Faezeh; Taghdiri, Maryam; Papari, Elaheh; Soltani Banavandi, Mohammad Javad; Akbari, Saeide; Tonekaboni, Seyed Hassan; Dehghani, Hossein; Ebrahimpour, Mohammad Reza; Bader, Ingrid; Davarnia, Behzad; Cohen, Monika; Khodaei, Hossein; Albrecht, Beate; Azimi, Sarah; Zirn, Birgit; Bastami, Milad; Wieczorek, Dagmar; Bahrami, Gholamreza; Keleman, Krystyna; Vahid, Leila Nouri; Tzschach, Andreas; Gärtner, Jutta; Gillessen-Kaesbach, Gabriele; Varaghchi, Jamileh Rezazadeh; Timmermann, Bernd; Pourfatemi, Fatemeh; Jankhah, Aria; Chen, Wei; Nikuei, Pooneh; Kalscheuer, Vera M; Oladnabi, Morteza; Wienker, Thomas F; Ropers, Hans-Hilger; Najmabadi, Hossein

    2018-01-04

    Autosomal recessive (AR) gene defects are the leading genetic cause of intellectual disability (ID) in countries with frequent parental consanguinity, which account for about 1/7th of the world population. Yet, compared to autosomal dominant de novo mutations, which are the predominant cause of ID in Western countries, the identification of AR-ID genes has lagged behind. Here, we report on whole exome and whole genome sequencing in 404 consanguineous predominantly Iranian families with two or more affected offspring. In 219 of these, we found likely causative variants, involving 77 known and 77 novel AR-ID (candidate) genes, 21 X-linked genes, as well as 9 genes previously implicated in diseases other than ID. This study, the largest of its kind published to date, illustrates that high-throughput DNA sequencing in consanguineous families is a superior strategy for elucidating the thousands of hitherto unknown gene defects underlying AR-ID, and it sheds light on their prevalence.

  6. Sibling relationship quality and psychosocial outcomes among adult siblings of individuals with autism spectrum disorder and individuals with intellectual disability without autism.

    Science.gov (United States)

    Tomeny, Theodore S; Ellis, Brandi M; Rankin, James A; Barry, Tammy D

    2017-03-01

    Research on adult typically-developing (TD) siblings of individuals with developmental disabilities remains limited, and outcomes for TD siblings appear to vary widely. For the current study, 82 adult TD siblings of individuals with autism spectrum disorder (ASD) or intellectual disability (ID) completed questionnaires about themselves and their affected sibling. Results of this study suggest that the attitudes possessed by adult TD siblings are important to consider when understanding adult TD sibling outcomes. Specifically, data indicate that higher levels of positive sibling relationship attitudes are related to TD siblings providing more aid/support to their sibling with a disability, along with having higher levels of general life satisfaction, and negatively related to levels of stress and depressive symptoms among TD siblings. Consistent with previous child research, siblings of individuals with ASD reported fewer positive sibling relationship attitudes compared to siblings of individuals with ID. Finally, group membership related to aid provided, depressive symptoms, and stress of TD siblings indirectly through sibling relationship attitudes. Overall, results indicate that sibling relationship attitudes may be particularly important to consider when conceptualizing sibling relationships when one sibling has an intellectual or developmental disability. Copyright © 2017 Elsevier Ltd. All rights reserved.

  7. A critical appraisal of Western Cape Forum for Intellectual Disability ...

    African Journals Online (AJOL)

    The 2011 the Western Cape Forum for Intellectual Disability v Government of The Republic of South Africa case flagged a lot of issues faced by persons with disabilities relating to access to education in South Africa. The case tackled certain perceptions about the ineducability of persons with profound and severe disability ...

  8. The Relation Between Intellectual Functioning and Adaptive Behavior in the Diagnosis of Intellectual Disability.

    Science.gov (United States)

    Tassé, Marc J; Luckasson, Ruth; Schalock, Robert L

    2016-12-01

    Intellectual disability originates during the developmental period and is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. In this article, we present a brief history of the diagnostic criteria of intellectual disability for both the DSM-5 and AAIDD. The article also (a) provides an update of the understanding of adaptive behavior, (b) dispels two thinking errors regarding mistaken temporal or causal link between intellectual functioning and adaptive behavior, (c) explains that there is a strong correlational, but no causative, relation between intellectual functioning and adaptive behavior, and (d) asserts that once a question of determining intellectual disability is raised, both intellectual functioning and adaptive behavior are assessed and considered jointly and weighed equally in the diagnosis of intellectual disability. We discuss the problems created by an inaccurate statement that appears in the DSM-5 regarding a causal link between deficits in intellectual functioning and adaptive behavior and propose an immediate revision to remove this erroneous and confounding statement.

  9. Genetics Home Reference: SYNGAP1-related intellectual disability

    Science.gov (United States)

    ... intellectual disability develops epilepsy, and about half have autism spectrum disorder . Related Information What does it mean if a disorder seems to run in my family? What is the prognosis of a genetic condition? ...

  10. Foundations of reading comprehension in children with intellectual disabilities

    NARCIS (Netherlands)

    Wingerden-Fontein, E.G. van; Segers, P.C.J.; Balkom, L.J.M. van; Verhoeven, L.T.W.

    2017-01-01

    Background Knowledge about predictors for reading comprehension in children with intellectual disabilities (ID) is still fragmented. Aims This study compared reading comprehension, word decoding, listening comprehension, and reading related linguistic and cognitive precursor measures in children

  11. Intellectual disability, oncogenes and tumour suppressor genes: the ...

    Indian Academy of Sciences (India)

    Identifying pathogenic copy number variations (CNV) involved in genomic disorders ... pathogenicity in the diagnosis of patients with intellectual disability, the ... tein has an essential role in the developing nervous system for the correct timing ...

  12. Genomic imbalance in subjects with idiopathic intellectual disability ...

    Indian Academy of Sciences (India)

    Department of Human Genetics, Sri Ramachandra University, Chennai 600 116, India. [Mohan S., Venkatesan ... Intellectual disability (ID) is a complex disorder with hetero- geneous aetiology. .... The ratios are tabulated on the right. Table 2.

  13. Intellectually disabled students’ conceptions concerning the earth and heavenly bodies

    Directory of Open Access Journals (Sweden)

    Engin Baysen

    2014-08-01

    Full Text Available Learning scientific concepts are crucial for both normally achieving and intellectually disabled students attending inclusion classes. This research study aimed to reveal intellectually disabled students’ conceptions and thinkings utilizing data of interviews and drawings concerning the earth and heavenly bodies and comparing them with the findings belonging to those showing normal mental achievement. Thirty intellectually disabled students (19 boys and 11 girls participated to this research. They were questioned individually using clinical interview technique. Intellectually disabled students have main similarities to those of normally achieving concerning the phenomenon. All the students participating in the present research study do have misconceptions concerning the phenomenon. Their thinking approaches (tendencies and the way they are affected by certain context while constructing their conceptions is similar to those of normally achieving. They used their concepts consistently and showed theory-like mental constructions.

  14. Extracurricular activities and the development of social skills in children with intellectual and specific learning disabilities.

    Science.gov (United States)

    Brooks, B A; Floyd, F; Robins, D L; Chan, W Y

    2015-07-01

    Children with intellectual disability and specific learning disabilities often lack age-appropriate social skills, which disrupts their social functioning. Because of the limited effectiveness of classroom mainstreaming and social skills training for these children, it is important to explore alternative opportunities for social skill acquisition. Participation in social activities is positively related to children's social adjustment, but little is known about the benefits of activity participation for children with intellectual and specific learning disabilities. This study investigated the association between frequency and type of social activity participation and the social competence of 8-11-year-old children with intellectual disability (n = 40) and specific learning disabilities (n = 53), in comparison with typically developing peers (n = 24). More time involved in unstructured activities, but not structured activities, was associated with higher levels of social competence for all children. This association was strongest for children with intellectual disability, suggesting that participation in unstructured social activities was most beneficial for these children. Future research on the quality of involvement is necessary to further understand specific aspects of unstructured activities that might facilitate social development. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  15. Changes in Energy Intake and Diet Quality during an 18-Month Weight-Management Randomized Controlled Trial in Adults with Intellectual and Developmental Disabilities.

    Science.gov (United States)

    Ptomey, Lauren T; Steger, Felicia L; Lee, Jaehoon; Sullivan, Debra K; Goetz, Jeannine R; Honas, Jeffery J; Washburn, Richard A; Gibson, Cheryl A; Donnelly, Joseph E

    2018-06-01

    Previous research indicates that individuals with intellectual and developmental disabilities (IDDs) are at risk for poor diet quality. The purpose of this secondary analysis was to determine whether two different weight-loss diets affect energy intake, macronutrient intake, and diet quality as measured by the Healthy Eating Index-2010 (HEI-2010) during a 6-month weight-loss period and 12-month weight-management period, and to examine differences in energy intake, macronutrient intake, and HEI-2010 between groups. Overweight/obese adults with IDDs took part in an 18-month randomized controlled trial and were assigned to either an enhanced Stop Light Diet utilizing portion-controlled meals or a conventional diet consisting of reducing energy intake and following the 2010 Dietary Guidelines for Americans. Proxy-assisted 3-day food records were collected at baseline, 6 months, and 18 months, and were analyzed using Nutrition Data System for Research software. HEI-2010 was calculated using the data from Nutrition Data System for Research. The study took place from June 2011 through May 2014 in the greater Kansas City metropolitan area. This was a secondary analysis of a weight-management intervention for adults with IDDs randomized to an enhanced Stop Light Diet or conventional diet, to examine differences in energy intake, macronutrient intake, and HEI-2010 across time and between groups. Independent- and paired-samples t tests and general mixed modeling for repeated measures were performed to examine group differences and changes at baseline, 6 months, and 18 months between the enhanced Stop Light Diet and conventional diet groups. One hundred and forty six participants (57% female, mean±standard deviation age=36.2±12.0 years) were randomized to either the enhanced Stop Light Diet or conventional diet group (77 enhanced Stop Light Diet, 69 conventional diet) and provided data for analysis at baseline, 124 completed the 6-month weight-loss period, and 101 completed

  16. Autonomy support in people with mild to borderline intellectual disability : Testing the Health Care Climate Questionnaire-Intellectual Disability (HCCQ-ID)

    NARCIS (Netherlands)

    Frielink, N.; Schuengel, C.; Embregts, P.J.C.M.

    2017-01-01

    Background Autonomy support in people with intellectual disability (ID) is an important yet understudied topic. Psychometrically sound instruments are lacking. This study tested the factor structure and reliability of an instrument for assessing the extent people with intellectual disability

  17. Interrogated with Intellectual Disabilities: The Risks of False Confession.

    Science.gov (United States)

    Schatz, Samson J

    2018-02-01

    False confessions happen. At least 245 people have been exonerated from convictions in cases featuring confessions that were simply not true. Confessions offer a narrative that allows law enforcement, and society in general, to neatly resolve cases with apparent clarity and closure. And yet the pressures officers place on suspects to provide that closure weigh disproportionately on the vulnerable, including individuals with intellectual disabilities. These individuals are disadvantaged at every step of the custodial interrogation, and they face heightened risks of falsely confessing. Moreover, the principal judicial safeguards against false confessions--assessing a suspect's Miranda waiver and determining whether a confession was voluntarily given within the bounds of the Fourteenth Amendment’s Due Process Clause--provide little protection for the innocent with intellectual disabilities. Few pieces of scholarship focus specifically on the heightened risks faced by individuals with intellectual disabilities throughout the process of police interrogation. This Note describes the various ways these individuals are disadvantaged. And it offers an additional data point illustrating the vulnerability of people with intellectual disabilities. This Note analyzes the 245 individuals (as of June 2, 2017) on the National Registry of Exonerations who have falsely confessed. Over one-quarter of them display indicia of intellectual disability. This percentage dwarfs the prevalence of people with intellectual disabilities in the general population and even exceeds most estimates of the proportion of the prison population suffering from intellectual disabilities. This Note concludes with several policy and doctrinal suggestions to better protect individuals with intellectual disabilities from the risks of false confession.

  18. Short-Term Memory Coding in Children With Intellectual Disabilities

    OpenAIRE

    Henry, L.; Conners, F.

    2008-01-01

    To examine visual and verbal coding strategies, I asked children with intellectual disabilities and peers matched for MA and CA to perform picture memory span tasks with phonologically similar, visually similar, long, or nonsimilar named items. The CA group showed effects consistent with advanced verbal memory coding (phonological similarity and word length effects). Neither the intellectual disabilities nor MA groups showed evidence for memory coding strategies. However, children in these gr...

  19. A survey of clinical nursing skills in intellectual disability nursing

    OpenAIRE

    McKeon, Michael

    2009-01-01

    In this study the question asked is: what clinical nursing skills are predominantly used in intellectual disability nursing? A survey of the nursing needs of people with moderate to severe intellectual disability in both residential and community units was undertaken with a questionnaire.The measure was a Likert design scale ranging across: skills used more than once a day, skills used daily, skills used weekly, skills used monthly, skills very rarely used, and skills never used.The results o...

  20. Therapy of depression in persons with intellectual disability

    OpenAIRE

    Tomić, Katarina; Mihajlović, Goran

    2012-01-01

    Considering the high frequency of depression among people with intellectual disability, the question of an appropriate therapeutic approach seems to be very important. The propper choice of therapy depends of the right diagnosis, which could present a problem, because of the atipical presentation of simptoms. Still, the efforts made to overcome onesidedness in treating depression among people with intellectual disability, which was seen mostly through insisting on psychopharmacotherapy, have ...

  1. Occupational burdens in special educators working with intellectually disabled students

    OpenAIRE

    Piotr Plichta

    2014-01-01

    Background: The article presents the results of psychosocial burdens in special educators (specialists in the field of oligophrenopedagogy) with intellectually disabled students. In theoretical part, specific context of occupational stress in special educators was introduced. Additionally, the need of broader research context regarding occupational stress and the risk of burnout in special educators working with intellectually disabled individuals were included. Material and Methods: The resu...

  2. Paediatric palliative care and intellectual disability-A unique context.

    Science.gov (United States)

    Duc, Jacqueline K; Herbert, Anthony Robert; Heussler, Helen S

    2017-11-01

    Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions. A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required. © 2017 John Wiley & Sons Ltd.

  3. Asthma in intellectual disability: are we managing our patients appropriately?

    Science.gov (United States)

    2016-01-01

    People with intellectual disability are a vulnerable group of people with asthma that has, to date, largely been ignored in the medical literature. Although guidelines for medication management for people with intellectual disability suggest asthma is treated as for other populations, there are special considerations that should be taken into account when managing asthma in this group. Due to their cognitive impairment as well as comorbidities, they are likely to require support with asthma self-management, including inhaler use. Their varying degrees of autonomy mean that there is often a need to provide education and information to both the person and their caregivers. Educational aims To understand general principles of health of people with intellectual disability and how this affects the healthcare professional’s approach to asthma management. To understand how intellectual disability affects cognition, autonomy and communication, and therefore the ability of a person to self-manage asthma. To recognise ways of mitigating respiratory disease risk in people with intellectual disability. To describe ways for healthcare professionals to support people with intellectual disability and their caregivers in asthma management. PMID:28210318

  4. Meeting the support needs of persons with mild intellectual disability or borderline intellectual functioning: still a long way to go.

    Science.gov (United States)

    Nouwens, P J G; Smulders, N B M; Embregts, P J C M; van Nieuwenhuizen, C

    2017-12-01

    Among persons with a mild intellectual disability or borderline intellectual functioning, differences in their characteristics imply that a differentiated approach is required to meet their needs. This retrospective study examined whether the history of support/treatment programs and the type of healthcare providers involved matched the specific support needs of persons with a mild intellectual disability or borderline intellectual functioning. Five (previously identified) profiles of persons with a mild intellectual disability or borderline intellectual functioning were used to investigate to what extent the support needs of this group had been met. For the 250 persons with mild intellectual disability or borderline intellectual functioning who matched these five profiles, data were collected retrospectively from their case files. Persons with mild intellectual disability or borderline intellectual functioning received a very similar amount and type of support/treatment programs. Differences between the profiles were found for non-verbal therapy, residential treatment and contacts with social work. Regarding the type of healthcare providers involved, differences between the profiles emerged for specialised intellectual disability services, youth services and specialised addiction services. The support programs for a heterogeneous population of persons with mild intellectual disability or borderline intellectual functioning seem to be suboptimal, indicating that more differentiation is required in the services offered to these individuals. © 2017 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  5. Identifying classes of persons with mild intellectual disability or borderline intellectual functioning : A latent class analysis

    NARCIS (Netherlands)

    Nouwens, P.J.G.; Lucas, R.; Smulders, N.B.M.; Embregts, P.J.C.M.; van Nieuwenhuizen, Ch.

    2017-01-01

    Background Persons with mild intellectual disability or borderline intellectual functioning are often studied as a single group with similar characteristics. However, there are indications that differences exist within this population. Therefore, the aim of this study was to identify classes of

  6. Motor Performance of Children with Mild Intellectual Disability and Borderline Intellectual Functioning

    Science.gov (United States)

    Vuijk, P. J.; Hartman, E.; Scherder, E.; Visscher, C.

    2010-01-01

    Background: There is a relatively small body of research on the motor performance of children with mild intellectual disabilities (MID) and borderline intellectual functioning (BIF). Adequate levels of motor skills may contribute to lifelong enjoyment of physical activity, participation in sports and healthy lifestyles. The present study compares…

  7. Motor performance of children with mild intellectual disability and borderline intellectual functioning

    NARCIS (Netherlands)

    Vuijk, P. J.; Hartman, E.; Scherder, E.; Visscher, C.

    2010-01-01

    Background There is a relatively small body of research on the motor performance of children with mild intellectual disabilities (MID) and borderline intellectual functioning (BIF). Adequate levels of motor skills may contribute to lifelong enjoyment of physical activity, participation in sports and

  8. Social inclusion and people with intellectual disability and challenging behaviour: a systematic review.

    Science.gov (United States)

    Bigby, Christine

    2012-12-01

    Social inclusion is central to disability policies internationally. The high risk of social exclusion for people with intellectual disability is compounded for those with challenging behaviour. A systematic literature review examined how social inclusion of people with intellectual disability and challenging behaviour has been researched and operationalised in the empirical literature, and aimed to determine what evidence exists about the extent of social inclusion by people with intellectual disability and challenging behaviour. A thematic analysis of the 14 papers identified that social inclusion has been poorly defined and measured, and that the little research that has occurred in respect of people with challenging behaviour has demonstrated their potential to be socially included. Clearer conceptualisation of inclusion, and greater understanding of practices that support social inclusion and system level mechanisms, which ensure goals around inclusion gain prominence in funding and support plans, may address the neglect of this critical quality-of-life domain for people with challenging behaviour.

  9. Interaction between Persons with Profound Intellectual and Multiple Disabilities and Their Partners: A Literature Review

    Science.gov (United States)

    Hostyn, Ine; Maes, Bea

    2009-01-01

    Background: High quality interactions are of crucial importance for quality of life of persons with profound intellectual and multiple disabilities (PIMD). This literature review describes and synthesises studies addressing the interaction between persons with PIMD and their partners. Method: A computerised literature search using defined…

  10. Suicidality among adults with intellectual disability.

    Science.gov (United States)

    Lunsky, Yona; Raina, Poonam; Burge, Philip

    2012-11-01

    The objective of the current study is to arrive at a better understanding of individuals with intellectual disability (ID) who threaten or attempt suicide. From a sample of 751 adults with ID who experienced a crisis, demographic and clinical profiles of 39 adults who threatened to commit suicide were compared to 28 adults who attempted suicide. These individuals were then compared to 337 adults who behaved aggressively toward others. Individuals who attempted suicide appeared similar to those who voiced suicide with the exception that suicide attempters were younger and more likely to visit the emergency department. Females, higher functioning individuals, and persons with a history of self-harm had higher odds of attempting or threatening suicide Research findings based on informant reported data, so diagnoses and delivery of services in hospital cannot be validated. Suicidality does occur in adults with ID, and can result in emergency department visits and hospitalizations. Recognition of variables associated with suicidality among those with ID by clinicians may allow for enhanced assessment, treatment services and ultimately more positive mental health outcomes for this group. Crown Copyright © 2012. Published by Elsevier B.V. All rights reserved.

  11. Reading skills among students with intellectual disabilities.

    Science.gov (United States)

    Ratz, Christoph; Lenhard, Wolfgang

    2013-05-01

    Students with intellectual disabilities (ID) display an extremely wide variety of skills in the field of literacy, and the ability to read and write are central learning aims in the education of students with ID. It is vital to gain detailed knowledge on the literacy skills of students with ID in order to plan instruction, create learning environments, implement educational policies or funding models and specify future fields of research. However, there has been little research into the prevalence and variation of their reading skills. The present study assessed the reading stages of 1629 school-aged students with ID regardless of aetiology (age 6-21) in Bavaria, one of the largest regions in Germany within a randomly chosen and representative sample. Teachers described the reading and writing stages of their students in a questionnaire following the developmental model of Frith. Results indicate that 29.3% do not read at all, 6.8% read at a logographic stage, 31.9% at an alphabetic and 32% at an orthographic level. Writing achievements are lower on average. We analyze and discuss the determinants of literacy in this sample with regard to the sociocultural background of students with ID and draw conclusions for teaching and school policies. Copyright © 2013 Elsevier Ltd. All rights reserved.

  12. Attitudes towards people with physical or intellectual disabilities among nursing, social work and medical students.

    Science.gov (United States)

    Kritsotakis, George; Galanis, Petros; Papastefanakis, Emmanouil; Meidani, Flora; Philalithis, Anastas E; Kalokairinou, Athena; Sourtzi, Panayota

    2017-12-01

    To examine and compare undergraduate healthcare students' attitudes towards people with physical or intellectual disabilities in Greece. The experience that people with disabilities have with health care is a complex interaction between their medical condition and the social and physical environment. Attitudes of the nursing and healthcare staff affect the quality of care and people's adaptation to their disability, self-image and rehabilitation outcomes. Descriptive cross-sectional survey. Nursing, Social Work and Medicine students (N = 1007, 79.4% female) attending three universities (Athens, Crete) completed during 2014-2016 two standardised scales regarding physical (ATDP-B) and intellectual disability (CLAS-ID). Descriptive and multivariate logistic regression analyses were performed. Attitudes towards people with physical disabilities in Greece (ATDP-B scores) were poor with scores just above the mid-point. Medical studies and higher knowledge and work with individuals with physical disabilities signified marginally more positive attitudes. Gender and age displayed no associations with attitudes. Regarding intellectual disability (CLAS-ID scores), nursing students had slightly less positive attitudes in "Similarity" but more positive attitudes in "Sheltering" subscales. Previous work and contact was related to more favourable and higher age to less favourable "Similarity" and "Sheltering" attitudes. Males had higher "Exclusion" scores. Those who knew people with intellectual disabilities had less favourable "Empowerment" attitudes. Knowledge was related to more positive attitudes in all four CLAS-ID subscales. Greek health and social care students showed poor attitudes towards people with physical and intellectual disability. When holding unfavourable attitudes, healthcare professionals become less involved with the people they care for and they do not provide nursing care to the best of their abilities. Undergraduate and continuing education, along with

  13. "It's My Life": Autonomy and People with Intellectual Disabilities

    Science.gov (United States)

    Björnsdóttir, Kristín; Stefánsdóttir, Guðrún V; Stefánsdóttir, Ástríður

    2015-01-01

    This article discusses autonomy in the lives of adults with intellectual disabilities. The article draws on inclusive research in Iceland with 25 women and 16 men and employs ideas of relational autonomy from the perspectives of the Nordic relational approach to disability. In this article, we examine autonomy in relation to private life, that is,…

  14. Dental Care among Young Adults with Intellectual Disability

    Science.gov (United States)

    Kancherla, Vijaya; Van Naarden Braun, Kim; Yeargin-Allsopp, Marshalyn

    2013-01-01

    Dental care among young adults with intellectual disability (ID) is poorly documented and largely unmet. By using population-based data from the Metropolitan Atlanta Developmental Disabilities Follow-Up Study, we assessed factors associated with at least one or two dental visits per year among young adults with and without ID. Significantly fewer…

  15. Intellectual Disabilities and Child Psychiatry: Looking to the Future

    Science.gov (United States)

    Hodapp, Robert M.; Dykens, Elisabeth M.

    2009-01-01

    We begin this article by examining the role of intellectual disabilities within child psychiatry, highlighting the relatively steady role of disabilities and the recent movement to examine behavior in specific genetic syndromes. We next propose five questions for future work. Questions relate to (1) specifying the nature of gene-brain-behavior…

  16. [Barcelona Test for Intellectual Disability: a new instrument for the neuropsychological assessment of adults with intellectual disability].

    Science.gov (United States)

    Esteba-Castillo, S; Pena-Casanova, J; Garcia-Alba, J; Castellanos, M A; Torrents-Rodas, D; Rodriguez, E; Deus-Yela, J; Caixas, A; Novell-Alsina, R

    2017-05-16

    Neuropsychological assessment in individuals with intellectual disability is of utmost importance in order to determine the cognitive deficits underlying brain dysfunction and limiting intellectual functioning and adaptive behavior. However, no neuropsychological batteries in Spanish language have been created and validated for this population. To adapt the 'programa integrado de exploracion neuropsicologica-test Barcelona' and to validate the new version, the Barcelona Test for Intellectual Disability (TB-DI). To create normative data for its clinical use. The original test was modified based on data from a pilot sample of 65 individuals with intellectual disability. In order to study the psychometric properties of the TB-DI, it was administered to a sample of 170 individuals with intellectual disability and to a group of 60 individuals without it. The relevant variables for stratification of normative data were determined by means of regression models. The TB-DI was finally composed by 67 subtests grouped in eight cognitive domains and it showed good psychometric properties. Normative data were created for five groups taking into account intellectual disability level, age and acquired curricular competence. These data were organized in percentiles in a way that allows the creation of cognitive profiles in the clinical and experimental fields. The TB-DI constitutes a tool of high applicability in the population with intellectual disability. It shows adequate validity and reliability, and it has good psychometric properties. The cognitive profiles obtained by the TB-DI will provide valuable information for the treatment of adult adults with mild and moderate intellectual disability.

  17. Model of Intellectual Disability and the Relationship of Attitudes Towards the Sexuality of Persons with an Intellectual Disability.

    Science.gov (United States)

    Parchomiuk, Monika

    2013-06-01

    The following article discusses the relationship between the model of intellectual disability and the attitudes towards sexuality of people with disabilities. This correlation has been verified during the author's own research conducted on students of several medical faculties such as nursing, public health, emergency medical services and physiotherapy. Tools of the author's design have been used in the research. Likert-type scale "Perspective of intellectual disability" has been used to determine the model of disability seen from the medical (individual) or social perspective. To examine the attitudes towards sexuality two tools of the author's own design have been used: a Likert-type scale "The essence of sexuality in persons with an intellectual disability" which has been used to analyze the cognitive aspect of the attitudes, and a semantic differential with notions concerning physical and psychosocial aspects of sexuality including the affective-evaluative aspect. As expected, significant correlations have been found between the model and the attitudes both in the cognitive and the affective-evaluative aspect. Higher scores for the individual model correlated with: (a) lover scores for most aspects of sexuality of people with intellectual disability, (b) perceiving them as asexual, (c) biological determinism in the sexual sphere. The social model concurred with positive values given to sexuality of people with intellectual disability and its normalization in the sphere of its determinants and symptoms.

  18. Pragmatic skills of children and youth with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Brojčin Branislav

    2016-01-01

    Full Text Available Pragmatic competence means the use of language in social context. Persons with intellectual disability experience numerous problems in this aspect of communication, but they are relatively pragmatically skilled in well-known situations, in which they are not subjected to significant cognitive and social requirements. The aim of this paper is to determine the level of pragmatic abilities of children and youth with mild intellectual disability and to perceive its relation to chronological age, speech comprehension, speech production, the level of intellectual functioning, gender and bilingualism of the participants. The level of pragmatic competence was tested in the sample of 120 children with mild intellectual disability, aged between 8 and 16, by using the Test of pragmatic language competence. The Clinical scales of Luria-Nebraska neuropsychological battery for children were also used. The results obtained in this research suggest that general level of achievement of children with mild intellectual disability in this domain of development is far below the expectations based on their chronological age. Significant progress appears between 12 and 14 years of age, but there are also two critical periods in their development. Important relations of pragmatic skills with speech comprehension, speech production, chronological age and intellectual level were established.

  19. Interventions for adults with mild intellectual disabilities and mental ill-health: a systematic review.

    Science.gov (United States)

    Osugo, M; Cooper, S-A

    2016-06-01

    People with intellectual disabilities have very high rates of mental ill health. Standard psychosocial interventions designed for the general population may not be accessible for people with mild intellectual disabilities, and drug usage tends to be modified - 'start low and go slow'. This systematic review aims to synthesise the evidence on psychological, pharmacological and electroconvulsive therapy (ECT) interventions for adults with mild intellectual disabilities and mental ill health. PRISMA guidelines were followed. Medline, Embase, PsycINFO and CINAHL were searched, as was grey literature and reference lists of selected papers. Papers were selected based on pre-defined inclusion and exclusion criteria. A proportion of papers were double reviewed. Data was extracted using a structured table. PROSPERO 2015:CRD42015015218. Initially, 18 949 records were identified. Sixteen studies were finally selected for inclusion; seven on psychological therapies, two on group exercise, five on antipsychotics and two on antidepressants. They do not provide definitive evidence for effectiveness of psychosocial interventions, nor address whether starting low and going slow is wise, or causes sub-optimum therapy. There are few evidence-based interventions for people with mild intellectual disabilities and mental ill-health; existing literature is limited in quantity and quality. Group cognitive-behavioural therapies have some supporting evidence - however, further randomised control trials are required, with longer-term follow-up, and larger sample sizes. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  20. Psychological status and coping styles of caregivers of individuals with intellectual disability and psychiatric illness.

    Science.gov (United States)

    Panicker, Anuja S; Ramesh, Sonali

    2018-06-27

    The psychological status of caregivers of individuals with intellectual disability and psychiatric illness (PI) is important for effective management. The aim of this study was to examine the psychological status and its relationship with coping styles among these caregivers. Caregivers (N = 80) of individuals with intellectual disability (n = 40) and PI (n = 40) were administered a socio-demographic questionnaire, depression, anxiety and stress scale and COPE Inventory. Caregivers experienced depression, anxiety and stress symptoms. These symptoms were found to be significantly higher among caregivers of individuals with intellectual disability than those with PI. The most common coping style used was religious coping. Use of positive reinterpretation and growth was associated with lower levels of depression and stress symptoms. Caregivers' mental health plays an important role in the quality of care delivery and outcome. Use of appropriate coping styles can reduce the impact of these symptoms. © 2018 John Wiley & Sons Ltd.

  1. Strategies to Advance Drug Discovery in Rare Monogenic Intellectual Disability Syndromes

    Science.gov (United States)

    Hettige, Nuwan C; Manzano-Vargas, Karla; Jefri, Malvin; Ernst, Carl

    2018-01-01

    Abstract Some intellectual disability syndromes are caused by a mutation in a single gene and have been the focus of therapeutic intervention attempts, such as Fragile X and Rett Syndrome, albeit with limited success. The rate at which new drugs are discovered and tested in humans for intellectual disability is progressing at a relatively slow pace. This is particularly true for rare diseases where so few patients make high-quality clinical trials challenging. We discuss how new advances in human stem cell reprogramming and gene editing can facilitate preclinical study design and we propose new workflows for how the preclinical to clinical trajectory might proceed given the small number of subjects available in rare monogenic intellectual disability syndromes. PMID:29040584

  2. The prevalence and nature of intellectual disability in Norwegian prisons.

    Science.gov (United States)

    Søndenaa, E; Rasmussen, K; Palmstierna, T; Nøttestad, J

    2008-12-01

    The objective of the study was to calculate the prevalence of inmates with intellectual disabilities (ID), and identify historical, medical and criminological characteristics of a certain impact. A random sample of 143 inmates from a Norwegian prison cross sectional sample was studied. The Hayes Ability Screening Index (HASI) was validated with the Wechsler Abbreviated Scale of Intelligence (WASI). The prevalence of inmates with ID, IQ intellectual handicap, are mostly absent in the Norwegian criminal justice system.

  3. Barriers in health care access faced by children with intellectual disabilities living in rural Uttar Pradesh

    Directory of Open Access Journals (Sweden)

    Jubin Varghese

    2015-09-01

    Full Text Available Purpose: People with disability in rural India face multiple barriers accessing healthcare; our hypothesis is that children with intellectual disability suffer the same but little is known about the barriers faced by them. The objectives of the study were to identify the health seeking behaviours of families with children with intellectual disabilities and the barriers they faced accessing healthcare. Methods: This qualitative study involved interviewing caregivers of children with intellectual disability from a pre-existing community development project in the Sahadoli Kadim block of rural Uttar Pradesh. Semi-structured interviews were also conducted with the local practitioners frequented by these caregivers. Results: Barriers identified were grouped under cognitive, structural and financial barriers which were found to be consistent with the Health Care Access Barrier Model (Carrillo, et al., 2011; WHO, 2011. Cognitive barriers included caregivers being unable to identify the complex health needs of their children. Caregivers lacked appropriate knowledge of intellectual disability, with doctors failing to educate them. Structural and financial barriers encompassed poor availability of healthcare providers and contributed to poor access to specialists. Caregivers had no information about government financial aid and healthcare providers did not refer them to these. Conclusion: Children with intellectual disabilities are forced to live with a poor quality of life because of cognitive, structural and financial barriers they face in accessing health care. Results are specific to children with intellectual disability in rural Sahadoli Kadim and could be used to inform policies and strategies to reduce disparities in health care access for these children.

  4. The Role of Sound in Residential Facilities for People With Profound Intellectual and Multiple Disabilities

    NARCIS (Netherlands)

    van den Bosch, Kirsten A.; Andringa, Tjeerd C.; Baskent, Deniz; Vlaskamp, Carla

    2016-01-01

    Attention to the auditory environment of people with profound intellectual and multiple disabilities (PIMD) is limited, both in research and practice. As there is a dynamic interplay between the quality of the auditory environment and well-being, a study was undertaken to test the validity of the

  5. Added value of facility management in institutes for intellectually disabled residents (with a severe behavioural disorder)

    NARCIS (Netherlands)

    Daatselaar, Rineke; Schaap, Mark; Mobach, Mark P.; Alexander, K.

    2013-01-01

    Within Facility Management (FM) the connection between organisation and space is a well-established topic. This study was made in the context of discovery and explored to what extent changes in organisation and space can contribute to the quality of life of intellectually disabled residents with a

  6. Joint efforts and shared responsibilities - Health information exchange in primary care for people with intellectual disabilities

    NARCIS (Netherlands)

    Mastebroek, M.

    2017-01-01

    People with intellectual disabilities (ID) have a considerably worse health than people without ID, for a great part related to the quality of healthcare provision and health communication. This research studied health information exchange (HIE) between people with ID, their support network, and

  7. Social Peer Interactions in Persons with Profound Intellectual and Multiple Disabilities: A Literature Review

    Science.gov (United States)

    Nijs, Sara; Maes, Bea

    2014-01-01

    Social interactions may positively influence developmental and quality of life outcomes. Research in persons with profound intellectual and multiple disabilities (PIMD) mostly investigated interactions with caregivers. This literature review focuses on peer interactions of persons with PIMD. A computerized literature search of three databases was…

  8. Rural Vocational and Transition Assessment Practices for Students with Intellectual Disabilities: What Do Educators Really Know?

    Science.gov (United States)

    Brendle, Janna; Tucker, Kathryn J.; Lock, Robin H.

    2018-01-01

    Transition planning requires quality vocational and transition assessment tailored to the student's needs, strengths, preferences and interests. Limited research is currently available that addresses assessment types and use of results that rural practitioners utilize to aid in transition planning for students with intellectual disabilities (ID).…

  9. Use of Transition Resources by Primary Care Providers for Youth with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Dressler, Paul B.; Nguyen, Teresa K.; Moody, Eric J.; Friedman, Sandra L.; Pickler, Laura

    2018-01-01

    Youth with intellectual and developmental disabilities (IDD) often experience difficulties with successful transition from pediatric to adult healthcare. A consultative Transition Clinic for youth with IDD was piloted as a quality improvement project, and assessed the engagement of primary care providers (PCPs) for transition planning after…

  10. Measuring Perceived Competence and Social Acceptance in Individuals with Intellectual Disabilities

    Science.gov (United States)

    Vermeer, Adri; Lijnse, Margot; Lindhout, Marleen

    2004-01-01

    The results of a study examining the psychometric quality of a pictorial scale to measure perceived physical competence, perceived cognitive competence and perceived social acceptance by peers and caregivers in individuals with intellectual disabilities are reported. The scale was administered twice to 100 subjects. The stability of the scale…

  11. Barriers to Sexuality for Individuals with Intellectual and Developmental Disabilities: A Literature Review

    Science.gov (United States)

    Sinclair, James; Unruh, Deanne; Lindstrom, Lauren; Scanlon, David

    2015-01-01

    Individuals with intellectual and developmental disabilities (ID/DD) experience multiple barriers that may prevent them from understanding and exploring their own sexuality. These barriers prevent them from achieving the same autonomy and quality of life as their peers. This research synthesis focuses on 13 articles published between 2000 and 2013…

  12. The Social Inclusion of Young Adults with Intellectual Disabilities: A Phenomenology of Their Experiences

    Science.gov (United States)

    Hall, Sarah A.

    2010-01-01

    Social inclusion enhances the quality of life of young adults with intellectual disabilities (ID). Young adults with ID continue to face prejudice and discrimination that limit their social inclusion. They experience limited social inclusion because there are not enough appropriate activities available and they have limited opportunities to…

  13. Examination of the Evidence Base for Using Visual Activity Schedules with Students with Intellectual Disability

    Science.gov (United States)

    Spriggs, Amy D.; Mims, Pamela J.; van Dijk, Wilhelmina; Knight, Victoria F.

    2017-01-01

    We conducted a comprehensive review of the literature to establish the evidence base for using visual activity schedules (VAS) with individuals with intellectual disability. Literature published after 2005 was evaluated for quality using the criteria developed by Horner et al.; a total of 14 studies were included as acceptable. Findings suggest…

  14. Acoustical Design Guidelines for Living Rooms for Adults with intellectual Disabilities

    NARCIS (Netherlands)

    Saher, K.

    2013-01-01

    The aim of this thesis is to investigate the effects of building design tools on acoustical quality parameters in living rooms for adults with intellectual disabilities (ID) and develop acoustical design guidelines for architects. This study is specifically concerned with the validation of

  15. Attentional Processes in Interactions between People with Profound Intellectual and Multiple Disabilities and Direct Support Staff

    Science.gov (United States)

    Ine, Hostyn; Heleen, Neerinckx; Bea, Maes

    2011-01-01

    Few studies have examined joint attention in interactions with persons with profound intellectual and multiple disabilities (PIMD), despite its important role in high-quality interaction. The purpose of this study is to describe the attention-directing behaviours of persons with PIMD and their direct support staff and the attention episodes…

  16. The Influence of Staff Training on Challenging Behaviour in Individuals with Intellectual Disability: A Review

    Science.gov (United States)

    Cox, Alison D.; Dube, Charmayne; Temple, Beverley

    2015-01-01

    Many individuals with intellectual disability engage in challenging behaviour. This can significantly limit quality of life and also negatively impact caregivers (e.g., direct care staff, family caregivers and teachers). Fortunately, efficacious staff training may alleviate some negative side effects of client challenging behaviour. Currently, a…

  17. Training Staff Serving Clients with Intellectual Disabilities: A Meta-Analysis of Aspects Determining Effectiveness

    Science.gov (United States)

    van Oorsouw, Wietske M. W. J.; Embregts, Petri J. C. M.; Bosman, Anna M. T.; Jahoda, Andrew

    2009-01-01

    The last decades have seen increased emphasis on the quality of training for direct-care staff serving people with intellectual disabilities. Nevertheless, it is unclear what the key aspects of effective training are. Therefore, the aim of the present meta-analysis was to establish the ingredients (i.e., goals, format, and techniques) for staff…

  18. The Close Relationships of People with Intellectual Disabilities: A Qualitative Study

    Science.gov (United States)

    Sullivan, Faye; Bowden, Keith; McKenzie, Karen; Quayle, Ethel

    2016-01-01

    Background: Positive interpersonal relationships have been found to enhance an individual's quality of life. However, people with intellectual disabilities (PWID) often have restricted social networks, and little is known about their views on close social relationships. The study aimed to explore how this group perceives and experiences close…

  19. READING-WRITING AND LITERACY IN CHILDREN WITH INTELLECTUAL DISABILITIES

    Directory of Open Access Journals (Sweden)

    Marilene Bortolotti Boraschi

    2013-07-01

    Full Text Available This article focuses on the role and learning of reading and wrinting to human development as a social practice, considering the necessary condition to reading and writing as an exercise in citizenship. Aims to reflect on the occurrence of reading-writing processes and literacy in children with intellectual disabilities. The study was conducted by means of literature, and are based on a qualitative research. The reflections made throughout the investigation brought some considerations on intellectual disability, charactering it. Allowed some notes on the processes of reading-writing and literacy. As the survey results, some thoughts were about the possible occurrence of the processes of reading-writing and literacy in intellectually disabled children, discussing how these processes can take place through pedagogical practices in classrooms common regular education, contributing to the appropriation of the world literate and active participation by such child in society.

  20. Short-term memory coding in children with intellectual disabilities.

    Science.gov (United States)

    Henry, Lucy

    2008-05-01

    To examine visual and verbal coding strategies, I asked children with intellectual disabilities and peers matched for MA and CA to perform picture memory span tasks with phonologically similar, visually similar, long, or nonsimilar named items. The CA group showed effects consistent with advanced verbal memory coding (phonological similarity and word length effects). Neither the intellectual disabilities nor MA groups showed evidence for memory coding strategies. However, children in these groups with MAs above 6 years showed significant visual similarity and word length effects, broadly consistent with an intermediate stage of dual visual and verbal coding. These results suggest that developmental progressions in memory coding strategies are independent of intellectual disabilities status and consistent with MA.

  1. Interventions to promote physical activity for adults with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Viviene A Temple

    2017-07-01

    Full Text Available Objective. To describe interventions designed to promote physical activity for adults with intellectual disabilities and the effects on overall physical activity levels and on health outcomes. Materials and methods. A systematic review of eight databases until January 31, 2015 identified 383 citations. The inclusion criteria were: a the study sample consisted of adults with intellectual disabilities, b the study implemented an intervention to initiate, increase, or maintain physical activity, and c quantitative or qualitative data were used to report the effectiveness of the intervention. Six articles from the 383 citations met this criterion. Results. Three studies resulted in significant increases in physical activity behaviour; however well-controlled trials designed to improve weight status by increasing physical activity did not produce significant effects. Conclusion. Overall, the results indicate that interventions to increase physical activity should simultaneously target the individual with intellectual disability as well as their proximal environment over a sustained period of time.

  2. LEARNING PROBLEMS IN CHILDREN WITH MILD INTELLECTUAL DISABILITY

    Directory of Open Access Journals (Sweden)

    Keskinova Angelka

    2018-04-01

    Full Text Available School failure is one of the more complex, more difficult and unfortunately frequent problem that modern school meets. Many factors can cause school failure, such as: child development characteristics, family and school-originated factors. The purpose of the research is analysis of the specific learning problems in students with a mild intellectual disability. For our research we used ACADIA test, which contains 13 subtests for assessing the overall individual functioning. The research involved 144 students. We divided the sample into two groups, children with intellectual disability (our target group and control group. We found that generally all students with the intellectual disability have special learning problems. According to individual subtests analysis we concluded that the ability for visual association is best developed among these students while on the subtest for auditory memory they achieved worse results. With the analysis of the control group we found that 13.75% of the students have special learning problems.

  3. [Psychiatric disorders and neurological comorbidity in children with intellectual disability].

    Science.gov (United States)

    Wriedt, Elke; Wiberg, Anja; Sakar, Vehbi; Noterdaeme, Michele

    2010-05-01

    This article gives an overview of the consultant child and adolescent psychiatric services in the region of Upper Bavaria (Germany). The data of 257 children and adolescents with intellectual disability and psychiatric disorders were evaluated. About 14% of the children with ID in special schools or day care centers, and 40% of the children with ID in residential care showed a definite psychiatric disorder. The most frequently diagnosed disorders were adjustment disorders, hyperkinetic disorders and conduct disorders, as well as emotional problems and pervasive developmental disorders. Children with severe intellectual disability had more additional somatic disorders and were more impaired in their psychosocial functions. The results show the need for psychiatric services for children and adolescents with intellectual disability and psychiatric disorders. The development and implementation of integrative and interdisciplinary models is necessary to allow for adequate medical care for these patients.

  4. Behaviour Problems in Children with Intellectual Disabilities in a Resource-Poor Setting in India--Part 1: Association with Age, Sex, Severity of Intellectual Disabilities and IQ

    Science.gov (United States)

    Lakhan, Ram; Kishore, M. Thomas

    2018-01-01

    Background: Behaviour problems are most common in people with intellectual disabilities. Nature of behaviour problems can vary depending upon the age, sex and intellectual level (IQ). Objectives: This study examined the distribution of behaviour problems across intellectual disability categories and their association with IQ age and sex in…

  5. Health promotion and intellectual disability: listening to men.

    Science.gov (United States)

    Bollard, Martin

    2017-01-01

    Taking responsibility for your own health has been a central tenet of public health policy internationally for a number of decades. Governments in the UK and internationally continue to promote a plethora of health promotion strategies, encouraging individuals and communities to adopt healthy lifestyle choices. Although it is widely recognised that men are not as proactive in seeking out medical help or taking on health promotion advice as women, limited gender-sensitive research exists in the field of intellectual disability. Despite many health promotion policy and practice strategies targeted at this population, little research exists exploring whether men with intellectual disability acknowledge health promotion advice. The study aimed to explore how men with mild-to-moderate intellectual disability understood and perceived their health and what health promotion messages they acted upon. The study was based on a participatory approach which enabled 11 men with intellectual disability to contribute as steering group members and as participants through one-to-one interviews. Data were collected between September 2011 and July 2012. Thematic analysis was undertaken. The participants demonstrated a capacity to understand their own health. This was inclusive of a concern about associating being obese with being unhealthy. The participants reported good relationships with their general practitioners (GPs) and felt valued, in particular when the GP was prepared to offer specific intellectual disability and health promotion advice. More gendered research inclusive of the views of this male population is required and the study reiterates the importance of promoting the health of men and women with intellectual disability. © 2015 John Wiley & Sons Ltd.

  6. Cyberbullying among students with intellectual and developmental disability in special education settings

    NARCIS (Netherlands)

    Didden, H.C.M.; Scholte, R.H.J.; Korzilius, H.P.L.M.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.B.; Lancioni, G.E.

    2009-01-01

    Objective: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. Methods: Students (n = 114) with intellectual and developmental disability who were between 12–19 years of age

  7. Cyberbullying among students with intellectual and developmental disability in special education settings.

    NARCIS (Netherlands)

    Didden, R.; Scholte, R.H.J.; Korzilius, H.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.; Lancioni, G.E.

    2009-01-01

    OBJECTIVE: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. METHODS: Students (n = 114) with intellectual and developmental disability who were between 12-19 years of age

  8. Cyberbullying among students with intellectual and developmental disability in special education settings

    NARCIS (Netherlands)

    Didden, R.; Scholte, R.H.J.; Korzilius, H.P.L.M.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.; Lancioni, G.E.

    2009-01-01

    OBJECTIVE: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. METHODS: Students (n = 114) with intellectual and developmental disability who were between 12-19 years of age

  9. Knowledge about the joy in children with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Jasielska Aleksandra

    2017-06-01

    Full Text Available The aim of this study was to characterize the knowledge about the joy in children with mild intellectual disability. The premises relating to mental functioning of these children suggest that this knowledge is poorer and less complex than the knowledge of their peers in the intellectual norm. The study used the authoring tool to measure children’s knowledge of emotions including the joy. This tool takes into account the cognitive representation of the basic emotions available in three codes: image, verbal, semantic and interconnection between the codes - perception, symbolization and conceptualization which perform the functions of perception, expression and understanding. The study included children with the intellectual norm (N = 30 and children with mild intellectual disability (N = 30. The obtained results mainly indicate the differences in how the happiness is understood by particular groups, to the detriment of children with disability. The character of the results is largely determined by the level of organization of knowledge about the joy and accompanying mental operations. The results will be discussed, among others, in the context of the adjustment of the programs of lasting increase of happiness for people with intellectual disability.

  10. Management challenges in children with both epilepsy and intellectual disability.

    Science.gov (United States)

    Buelow, Janice M; Shore, Cheryl P

    2010-01-01

    People who have both epilepsy and intellectual disability have significant problems requiring skilled health care management. Clinical nurse specialists have the unique opportunity to work with these people and their families to help them develop self-management and family management skills. In this article, we describe some factors associated with intellectual disability and epilepsy. In addition, we address the management challenges associated with this dual diagnoses in 3 areas: (1) problems associated with the management of seizure and prescription management, (2) problems associated with the seizure management other than prescriptions, and (3) life management issues. Finally, we suggest ways that clinical nurse specialists can foster development of management skills.

  11. The main signs of ageing in people with intellectual disability.

    Science.gov (United States)

    Wark, Stuart; Hussain, Rafat; Edwards, Helen

    2016-12-01

    Investigations around ageing with an intellectual disability have increased substantially in the past three decades. A research gap continued to exist regarding the detection of ageing issues in this cohort of people, particularly in rural areas where access to specialist support continued to be limited. The purpose of this study was to identify the main signs of ageing in rural people with intellectual disabilities. A multi-round Delphi design was used to examine what signs of ageing were observed by disability support staff, who assisted people with intellectual disability. The project was conducted across nine of the ten rural regions (as defined by the government funding body) in New South Wales (NSW). There were 31 participants representing 14 non-government organisations. The group was composed of 26 women and 5 men, with a mean age of 47 years, who averaged 10-year experience with people with intellectual disabilities. The objective was to gain the direct input of rurally based disability workers to identify the main signs of ageing in people with intellectual disabilities. Thirty-two specific signs of ageing, including emerging mental health issues, grief, loss of identity and aggression, were identified. A thematic analysis indicated two main categories: mental/emotional functioning and physical functioning. When carers have the information and skills needed to identify the main signs of ageing, they can more accurately recognise and address potential problems in a timely manner. Such understandings have the potential to reduce premature admissions to residential aged-care. © 2016 National Rural Health Alliance Inc.

  12. Special education for intellectual disability: current trends and perspectives.

    Science.gov (United States)

    Kauffman, James M; Hung, Li-Yu

    2009-09-01

    To inform readers of current issues in special education for individuals with intellectual disabilities and summarize recent research and opinion. Two issues dominate special education for students with intellectual disabilities in the early 21st century. First, what should be taught to such students and who should teach them? Second, where should such students be taught - in 'inclusive' settings alongside normal peers or in special settings dedicated to their special needs? Research on teaching reading, arithmetic, and functional daily living skills to students with disabilities suggests the superiority of direct, systematic instruction. Universal design is often seen as supportive of inclusion. Inclusion has been seen as the central issue in special education but is gradually giving way to concern for what students learn. Direct, systematic instruction in reading, arithmetic, and daily living skills is the most effective approach to teaching students with intellectual disabilities. Basic concepts and logic suggest that special and general education cannot be equivalent. We conclude that what students are taught should be put ahead of where they are taught. Our fundamental concern is that students with intellectual disabilities be respected and be taught all they can learn.

  13. The Role of Learning Disability Nurses in Promoting Cervical Screening Uptake in Women with Intellectual Disabilities: A Qualitative Study

    Science.gov (United States)

    Lloyd, Jennifer L.; Coulson, Neil S.

    2014-01-01

    Research suggests that the uptake of cervical screening by women with intellectual disabilities (commonly known as learning disabilities within UK policy frameworks, practice areas and health services) is poor compared to women without intellectual disabilities. The present study explored learning disability nurses' experiences of supporting women…

  14. Mothering with an Intellectual Disability: A Phenomenological Exploration of Making Infant-Feeding Decisions

    Science.gov (United States)

    Guay, Amanda; Aunos, Marjorie; Collin-Vézina, Delphine

    2017-01-01

    Background: Mothers with intellectual disability are less likely than mothers without intellectual disability to breastfeed their infants, but there is little literature that addresses infant-feeding decisions among this population. This study explores experiences of mothers with intellectual disability in making and carrying out infant-feeding…

  15. Is It Worth It? Benefits in Research with Adults with Intellectual Disability

    Science.gov (United States)

    McDonald, Katherine E.; Conroy, Nicole E.; Olick, Robert S.

    2016-01-01

    Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family…

  16. Transition and Students with Mild Intellectual Disability: Findings From the National Longitudinal Transition Study-2

    Science.gov (United States)

    Bouck, Emily C.; Joshi, Gauri S.

    2016-01-01

    Students with intellectual disability historically struggle with post-school outcomes. However, much of the research on students with intellectual disability relative to post-school outcomes and transition services is aggregated for students with mild, moderate, and severe intellectual disability. This secondary analysis of the National…

  17. Genetics Home Reference: PPP2R5D-related intellectual disability

    Science.gov (United States)

    ... Health Conditions PPP2R5D-related intellectual disability PPP2R5D-related intellectual disability Printable PDF Open All Close All Enable Javascript ... view the expand/collapse boxes. Description PPP2R5D -related intellectual disability is a neurological disorder characterized by moderate to ...

  18. Eye movement desensitization and reprocessing in an adolescent with epilepsy and mild intellectual disability

    NARCIS (Netherlands)

    Rodenburg, R.; Benjamin, A.; Meijer, A.M.; Jongeneel, R.

    2009-01-01

    Intellectual disability is a comorbid condition in epilepsy. People with epilepsy and intellectual disability are at high risk of developing behavioral problems. Among the many contributors to behavioral problems in people with epilepsy and intellectual disability are those of traumatic experiences.

  19. "I Never Thought about It": Teaching People with Intellectual Disability to Vote

    Science.gov (United States)

    Agran, Martin; MacLean, William; Andren, Katherine Anne Kitchen

    2015-01-01

    Despite an increasing commitment in promoting the full inclusion of people with intellectual disability in their communities, it appears that few adults with intellectual disability participate in elections as registered voters. We surveyed a variety of stakeholders about voting by people with intellectual disability using quantitative and…

  20. Predictors of Visual-Motor Integration in Children with Intellectual Disability

    Science.gov (United States)

    Memisevic, Haris; Sinanovic, Osman

    2012-01-01

    The aim of this study was to assess the influence of sex, age, level and etiology of intellectual disability on visual-motor integration in children with intellectual disability. The sample consisted of 90 children with intellectual disability between 7 and 15 years of age. Visual-motor integration was measured using the Acadia test of…

  1. "You Have to Care." Perceptions of Promoting Autonomy in Support Settings for Adults with Intellectual Disability

    Science.gov (United States)

    Petner-Arrey, Jami; Copeland, Susan R.

    2015-01-01

    This study from the south-western United States investigated the perceptions of persons with intellectual disability receiving support and of persons providing support regarding the autonomy of people with intellectual disability. The participants included 10 people with intellectual disability and 10 support workers. Through interviews, this…

  2. Contextual Predictors of Self-Determined Actions in Students with and without Intellectual Disability

    Science.gov (United States)

    Mumbardó-Adam, Cristina; Shogren, Karrie A.; Guàrdia-olmos, Joan; Giné, Climent

    2017-01-01

    Research in the field of intellectual disability suggests that promotion of self-determination triggers positive transition outcomes for youth with intellectual disability. This article examines the contributions of personal and environmental variables in predicting self-determined action in students with and without intellectual disability. The…

  3. Gender Differences in Psychiatric Diagnoses among Inpatients with and without Intellectual Disabilities

    Science.gov (United States)

    Lunsky, Yona; Bradley, Elspeth A.; Gracey, Carolyn D.; Durbin, Janet; Koegl, Chris

    2009-01-01

    There are few published studies on the relationship between gender and psychiatric disorders in individuals with intellectual disabilities. Adults (N = 1,971) with and without intellectual disabilities who received inpatient services for psychiatric diagnosis and clinical issues were examined. Among individuals with intellectual disabilities,…

  4. Processing of Facial Expressions of Emotions by Adults with Down Syndrome and Moderate Intellectual Disability

    Science.gov (United States)

    Carvajal, Fernando; Fernandez-Alcaraz, Camino; Rueda, Maria; Sarrion, Louise

    2012-01-01

    The processing of facial expressions of emotions by 23 adults with Down syndrome and moderate intellectual disability was compared with that of adults with intellectual disability of other etiologies (24 matched in cognitive level and 26 with mild intellectual disability). Each participant performed 4 tasks of the Florida Affect Battery and an…

  5. AGING ADULTS WITH INTELLECTUAL DISABILITIES: PERSPECTIVES ON EMERGING SERVICE CONCERNS

    Directory of Open Access Journals (Sweden)

    Matthew P. JANICKI

    2010-04-01

    Full Text Available With improved general health status many adults with intellectual disabilities (ID are living to old age, much like other adults. The World Health Organization has recognized the needs of this older population and identified the challenges they pose for governmental ministries and non-governmental organizations charged with planning, advocacy, financing, and delivery of specialty lifecare services and rehabilitation programs. These challenges include a range of issues normally confronting older adults, such as pensioning and financial security, changes in lifestyles associated with retirement and adaptations to living arrangements and housing, modifications in daily activities and community inclusion, changing physical and sensory abilities, and greater demands for support for aging families and other carers. As older adults with ID may also be affected by latelife or age-related conditions and begin to experience secondary impairments, these challenges may be more pronounced when encountered by NGOs located in countries with developing market economies. In these instances, the onus on promoting healthy aging will fall upon national entities which are responsible for targeting people with disabilities from infancy and childhood, and providing lifelong supports for adolescents, adults, and families. Ideally, if such efforts are undertaken early, they will lead to actions that can be undertaken to promote better health as people with ID age and ensure that the latter part of their lives are experienced as ‘quality of life years.’

  6. KEMANDIRIAN ANAK INTELLECTUAL DISABILITY TERKAIT DENGAN TINGKAT KEMATANGAN SOSIAL

    Directory of Open Access Journals (Sweden)

    Muh Khoironi Fadli

    2014-04-01

    Full Text Available Background:Intellectual disability is disorder of intellectual function that is significantly below averagewith various deficits in adaptive function, such as taking care of oneself or occupational activities thatemerge before the age of 18 years old. One characteristic of intellectuallydisabled children in adaptivefunction is social maturity disorder. Children with intellectual disability haveproblem in social maturityandlimitation in fulfilling needs in daily activities.Objective:To identify correlation between social maturity and self-reliance of children with intellectualdisability.Methods:The study was non experimental. It used cross sectional design and quantitative approach.Samples were taken throughproportionate stratified random samplingtechnique. Research instrumentused to assess social maturity was Vineland Social Maturity Scale (VSMS and self-reliance wasFunctional Independence Measure for Children (WeeFIM. Subject of the study were children withintellectual disability in SLB Bakti Siwithat met inclusion and exclusion criteria as many as 61children.The study usednon parametricSpearman’s Rank Correlationtestat significancep<0.05.Result:Social maturity was high in 9 children (14.8%, medium in 23 children (37.7%, and low in 29children (47.9%. Self-reliance of children with intellectual disability showed average score (mean105.36with deviation standard15.43and range56-126.Score of correlation between social maturity andself-reliance of children with intellectual disability inSLB Bakti Siwishowedpvalue 0.000 (p<0.05.Conclusion: There was significant correlation between social maturity and sel-reliance of children withintellectual disability in SLB Bakti Siwi with score of correlation in strong category.

  7. Injury among adolescents with intellectual disability: A prospective cohort study.

    Science.gov (United States)

    White, David; McPherson, Lyn; Lennox, Nicholas; Ware, Robert S

    2018-04-12

    Injury is the leading cause of mortality and morbidity in adolescents worldwide, and injury rates have been shown to be higher among youth with intellectual disability. Despite this, injury among adolescents with intellectual disability remains poorly investigated. This study aimed to identify characteristics associated with injury among adolescents with intellectual disability living in the community. A cohort of adolescents with intellectual disability living in southern Queensland, Australia was investigated prospectively between January 2006 and June 2010. Personal characteristics were collected via postal questionnaire. Injury information, including mechanism and location of injury, was extracted from general practitioner records. The association between demographic, social and clinical characteristics of participants and episodes of injury was investigated using negative binomial regression. A total of 289 injuries were recorded from 432 participants over 1627.3 years of study-time. The overall annual injury incidence was 17.5 (95%CI 14.7, 20.9) per 100 person years. Presence of ADHD and less severe disability was associated with increased risk of injury. Down syndrome and reduced verbal communication capacity were associated with decreased risk of injury. Falls accounted for the highest single mechanism of injury (19.0%) with the majority (73.2%) of injuries involving either upper or lower limbs. ADHD is a co-morbidity that increases risk of injury among adolescents with intellectual disability. A critical component of injury prevention is avoidance of the great variety of environmental risk factors for injury relevant to this population. Copyright © 2018 Elsevier Ltd. All rights reserved.

  8. Ethnic Variation in Service Utilisation among Children with Intellectual Disability

    Science.gov (United States)

    Dura-Vila, G.; Hodes, M.

    2009-01-01

    Background: This study examined whether service utilisation among children with intellectual disability (ID) varied by ethnic cultural group. Method: Survey carried out in four special schools in London. Information was provided by school teachers using case files, and 242 children aged 7 to 17 years with mild and moderate ID were identified.…

  9. The effects of rehabilitation on intellectually-disabled people - a ...

    African Journals Online (AJOL)

    Background: Rehabilitation has emerged as a comprehensive approach to addressing intellectually-disabled peoples' skill deficits, improving competencies and facilitating optimal functioning in order to provide the greatest possible measure of social and economic participation, self-reliance and independence. Objective: ...

  10. Study healthy ageing and intellectual disabilities : Recruitment and design

    NARCIS (Netherlands)

    Hilgenkamp, Thessa I. M.; Bastiaanse, Luc P.; Hermans, Heidi; Penning, Corine; van Wijck, Ruud; Evenhuis, Heleen M.

    2011-01-01

    Problems encountered in epidemiologic health research in older adults with intellectual disabilities (ID) are how to recruit a large-scale sample of participants and how to measure a range of health variables in such a group. This cross-sectional study into healthy ageing started with founding a

  11. ADAT3-related intellectual disability: Further delineation of the phenotype.

    Science.gov (United States)

    El-Hattab, Ayman W; Saleh, Mohammed A; Hashem, Amal; Al-Owain, Mohammed; Asmari, Ali Al; Rabei, Hala; Abdelraouf, Hanem; Hashem, Mais; Alazami, Anas M; Patel, Nisha; Shaheen, Ranad; Faqeih, Eissa A; Alkuraya, Fowzan S

    2016-05-01

    ADAT3-related intellectual disability has been recently described in 24 individuals from eight Saudi families who had cognitive impairment and strabismus. Other common features included growth failure, microcephaly, tone abnormalities, epilepsy, and nonspecific brain abnormalities. A single homozygous founder mutation (c.382G>A:p.(V128M)) in the ADAT3 gene, which encodes a protein that functions in tRNA editing, was identified in all affected individuals. In this report, we present additional 15 individuals from 11 families (10 Saudis and 1 Emirati) who are homozygous for the same founder mutation. In addition to the universal findings of intellectual disability and strabismus, the majority exhibited microcephaly and growth failure. Additional features not reported in the original cohort include dysmorphic facial features (prominent forehead, up-slanted palpebral fissures, epicanthus, and depressed nasal bridge), behavioral problems (hyperactivity and aggressiveness), recurrent otitis media, and growth hormone deficiency. ADAT3-related intellectual disability is an important recognizable cause of intellectual disability in Arabia. © 2016 Wiley Periodicals, Inc.

  12. Exclusion of children with intellectual disabilities from regular ...

    African Journals Online (AJOL)

    Study investigated why teachers exclude children with intellectual disability from the regular classrooms in Nigeria. Participants were, 169 regular teachers randomly selected from Oyo and Ogun states. Questionnaire was used to collect data result revealed that 57.4% regular teachers could not cope with children with ID ...

  13. Educational Outcomes for Secondary Students with Mild Intellectual Disability

    Science.gov (United States)

    Bouck, Emily C.

    2017-01-01

    Attention to the educational programming of secondary students with mild intellectual disability has declined in recent decades, although the need for the attention has not, particularly when considering the postschool outcomes of this population. This paper discusses the current state postschool outcomes and secondary education services for…

  14. Paediatric Palliative Care and Intellectual Disability--A Unique Context

    Science.gov (United States)

    Duc, Jacqueline K.; Herbert, Anthony Robert; Heussler, Helen S.

    2017-01-01

    Background: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. Method: This study describes the complex care of children with life-limiting conditions and intellectual…

  15. Obesity in School Children with Intellectual Disabilities in France

    Science.gov (United States)

    Salaun, Laureline; Berthouze-Aranda, Sophie

    2011-01-01

    Background: The aims of this study were to assess the prevalence of obesity in school children with intellectual disabilities and to determine the most appropriate indicators of obesity measurement. Materials and Methods: The weight, height, body mass index (BMI), waist circumference, waist-to-height ratio and body fat percentage as measured by…

  16. Life Online: Resources for Students with an Intellectual Disability.

    Science.gov (United States)

    Weeks, Kerri

    2001-01-01

    Two Australian agencies planned, developed, piloted, and evaluated an online resource for teaching independent living skills to adult students with a mild intellectual disability using technology and the Internet. The resource, called Life Online, is a package of support resource materials tested in regional classrooms in Victoria, Australia.…

  17. ADHD Symptoms in Children with Mild Intellectual Disability

    Science.gov (United States)

    Simonoff, Emily; Pickles, Andrew; Wood, Nicky; Gringras, Paul; Chadwick, Oliver

    2007-01-01

    Objectives: To determine whether the nature and correlates of attention-deficit/hyperactivity disorder (ADHD) symptoms are different in subjects with mild intellectual disability (ID) compared to subjects with average ability. Method: From a general population sample of 2,726 12- to 15-year-olds, a stratified subsample was selected to enrich for…

  18. Conceptions of Work in Italian Adults with Intellectual Disability

    Science.gov (United States)

    Ferrari, Lea; Nota, Laura; Soresi, Salvatore

    2008-01-01

    People's ideas about work can greatly affect the ways in which they characterize their own work experience and their lives. The first aim of the present study was to analyze the concept of work in individuals with mild or moderate intellectual disability working in competitive or sheltered work settings and, second, to compare the notions of work…

  19. System Dynamics Modeling for Intellectual Disability Services: A Case Study

    Science.gov (United States)

    Duryan, Meri; Nikolik, Dragan; van Merode, Godefridus; Curfs, Leopold

    2012-01-01

    Organizations providing services to persons with intellectual disabilities (ID) are complex because of many interacting stakeholders with often different and competing interests. The combination of increased consumer demand and diminished resources makes organizational planning a challenge for the managers of such organizations. Such challenges…

  20. Short-Term Memory Coding in Children with Intellectual Disabilities

    Science.gov (United States)

    Henry, Lucy

    2008-01-01

    To examine visual and verbal coding strategies, I asked children with intellectual disabilities and peers matched for MA and CA to perform picture memory span tasks with phonologically similar, visually similar, long, or nonsimilar named items. The CA group showed effects consistent with advanced verbal memory coding (phonological similarity and…

  1. Cardiovascular Disease Risk Factors in Older People with Intellectual Disabilities

    NARCIS (Netherlands)

    C.F. de Winter (Channa)

    2014-01-01

    markdownabstract__Abstract__ Chapter 1 General introduction There is an increasing group of older people with intellectual disability in The Netherlands, reaching almost the same life expectancy as the general population. Age-related diseases, such as cardiovascular disease, cancer and dementia

  2. Aggression as Positive Reinforcement in People with Intellectual Disabilities

    Science.gov (United States)

    May, Michael E.

    2011-01-01

    From an applied behavior-analytic perspective, aggression in people with intellectual disabilities is mostly maintained by social reinforcement consequences. However, nonsocial consequences have also been identified in functional assessments on aggression. Behaviors producing their own reinforcement have been labeled "automatic" or "nonsocial" in…

  3. Development of physical fitness in children with intellectual disabilities

    NARCIS (Netherlands)

    Hartman, Esther; Smith, J.; Westendorp, M.; Visscher, C.

    BackgroundFew studies examined the development of physical fitness in children and youth with intellectual disabilities (ID), but the developmental patterns of physical fitness are largely unknown. The first aim was to examine physical fitness of primary school children with ID, aged 8-12, and

  4. The prevalence of constipation in institutionalized people with intellectual disability

    NARCIS (Netherlands)

    Böhmer, C. J.; Taminiau, J. A.; Klinkenberg-Knol, E. C.; Meuwissen, S. G.

    2001-01-01

    Constipation is a common problem in people with intellectual disability (ID). Laxatives are frequently prescribed with disappointing results. The prevalence of constipation was investigated in a random population of 215 people with ID (IQ < 50) and constipation was correlated with clinical symptoms.

  5. Prevalence of chronic diseases in adolescents with intellectual disability

    NARCIS (Netherlands)

    Oeseburg, B.; Jansen, D. E. M. C.; Dijkstra, G. J.; Groothoff, J. W.; Reijneveld, S. A.

    2010-01-01

    Valid community-based data on the prevalence of chronic diseases in adolescents (12-18 years) with intellectual disability (ID-adolescents) are scarce. The aim of this study was to assess the prevalence rates and the nature of chronic diseases in a population of ID-adolescents and to compare them

  6. Scaling Methods to Measure Psychopathology in Persons with Intellectual Disabilities

    Science.gov (United States)

    Matson, Johnny L.; Belva, Brian C.; Hattier, Megan A.; Matson, Michael L.

    2012-01-01

    Psychopathology prior to the last four decades was generally viewed as a set of problems and disorders that did not occur in persons with intellectual disabilities (ID). That notion now seems very antiquated. In no small part, a revolutionary development of scales worldwide has occurred for the assessment of emotional problems in persons with ID.…

  7. Same-Sex Relationships and Women with Intellectual Disabilities

    Science.gov (United States)

    Burns, Jan; Davies, Danielle

    2011-01-01

    Background: Limited existing research looking at homosexuality and people with intellectual disabilities has identified a low level of knowledge, homophobic attitudes and negative experiences for gay men. Mainstream research has identified traditional gender role beliefs to be highly associated with negative attitudes towards homosexuality. This…

  8. Verbal Working Memory in Children with Mild Intellectual Disabilities

    Science.gov (United States)

    Van der Molen, M. J.; Van Luit, J. E. H.; Jongmans, M. J.; Van der Molen, M. W.

    2007-01-01

    Background: Previous research into working memory of individuals with intellectual disabilities (ID) has established clear deficits. The current study examined working memory in children with mild ID (IQ 55-85) within the framework of the Baddeley model, fractionating working memory into a central executive and two slave systems, the phonological…

  9. College Students' Conceptualizations of Deficits Involved in Mild Intellectual Disability

    Science.gov (United States)

    Musso, Mandi W.; Barker, Alyse A.; Proto, Daniel A.; Gouvier, Wm. Drew

    2012-01-01

    Precedential rulings in recent capital murder trials may, in some cases, leave it up to a jury to determine whether or not an individual meets criteria for an intellectual disability (ID) and should be spared from the death penalty. Despite the potential for misconceptions about ID to bias decisions, few empirical studies have examined the…

  10. Risk of Fall for Individuals with Intellectual Disability

    Science.gov (United States)

    Chiba, Yoichi; Shimada, Atsuyoshi; Yoshida, Futoshi; Keino, Hiromi; Hasegawa, Mariko; Ikari, Hiroyuki; Miyake, Shikako; Hosokawa, Masanori

    2009-01-01

    Our aim was to identify risk factors for falling and establish a method to assess risk for falls in adults with intellectual disabilities. In a cross-sectional survey of 144 Japanese adults, we found that age, presence of epilepsy, and presence of paretic conditions were independent risk factors. The Tinetti balance and gait instrument was…

  11. An Assessment of Intellectual Disability Among Aboriginal Australians

    Science.gov (United States)

    Glasson, E. J.; Sullivan, S. G.; Hussain, R.; Bittles, A. H.

    2005-01-01

    Background: The health and well-being of Indigenous people is a significant global problem, and Aboriginal Australians suffer from a considerably higher burden of disease and lower life expectancy than the non-Indigenous population. Intellectual disability (ID) can further compromise health, but there is little information that documents the…

  12. Depression in Adults with Intellectual Disability: Symptoms and Challenging Behaviour

    Science.gov (United States)

    Hurley, A. D.

    2008-01-01

    Background: Psychiatric evaluation of adults with intellectual disability (ID) remains complex because of limitations in verbal abilities, atypical clinical presentation and challenging behaviour. This study examines the clinical presentation of adults with depression compared with bipolar disorder, anxiety disorders and non-psychiatric control…

  13. Intellectual Disability Modifies Gender Effects on Disruptive Behaviors

    Science.gov (United States)

    Einfeld, Stewart L.; Gray, Kylie M.; Ellis, Louise A.; Taffe, John; Emerson, Eric; Tonge, Bruce J.; Horstead, Sian K.

    2010-01-01

    In typically developing children, boys are more commonly diagnosed than girls with disruptive behavior disorders, namely, attention-deficit/hyperactivity disorder, conduct disorder, and oppositional defiant disorder. For children with intellectual disability (ID), the evidence for this gender effect is less clear. In this report we examine gender…

  14. Caregiving and Adults with Intellectual Disabilities Affected by Dementia

    Science.gov (United States)

    Courtenay, Ken; Jokinen, Nancy S.; Strydom, Andre

    2010-01-01

    Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997-2008 on the current knowledge on social-psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level…

  15. Cancer Screening in Women with Intellectual Disabilities: An Irish perspective

    Science.gov (United States)

    Reidy, Mary; Denieffe, Suzanne; Foran, Sinéad

    2014-01-01

    In the Republic of Ireland, more than 8000 women with intellectual disabilities (IDs), aged 20 years and over, are registered for service provision. Their health needs challenge preventative health services including breast and cervical cancer screening programmes. This review explores the literature about cancer screening participation rates and…

  16. Positive Group Psychotherapy Modified for Adults with Intellectual Disabilities

    Science.gov (United States)

    Tomasulo, Daniel J.

    2014-01-01

    Mental health disorders are considerably more prevalent among people with intellectual disabilities than in the general population, yet research on psychotherapy for people with dual diagnosis is scarce. However, there is mounting evidence to show that adults with a dual diagnosis can find help through group therapy and have more productive and…

  17. Recruitment to Intellectual Disability Research: A Qualitative Study

    Science.gov (United States)

    Nicholson, L.; Colyer, M.; Cooper, S. -A.

    2013-01-01

    Background: Difficulties in the recruitment of adults with intellectual disability (ID) to research studies are well described but little studied. The aim of this study was to investigate the difficulties in recruiting to a specific research project, in order to inform future recruitment to ID research. Methods: Individual semi-structured…

  18. Healthy Persons with Intellectual Disabilities in an Inclusive Society

    Science.gov (United States)

    van Schrojenstein Lantman-de Valk, H. M. J.

    2009-01-01

    Persons with intellectual disabilities (ID) have twice as many health problems than the general public. The author discusses evidence-based research on prevalence and best treatment of primary and secondary health problems in persons with ID. Citing the pan-European Pomona project, European data were collected on training for health professionals…

  19. The Impact of Simulated Interviews for Individuals with Intellectual Disability

    Science.gov (United States)

    Walker, Zachary; Vasquez, Eleazar; Wienke, Wilfred

    2016-01-01

    The purpose of this research study was to explore the efficacy of role-playing and coaching in mixed-reality environments for the acquisition and generalization of social skills leading to successful job interview performance. Using a multiple baseline across participants design, five young adults with intellectual disability practiced…

  20. Comparison of patients with and without intellectual disability under ...

    African Journals Online (AJOL)

    Background and Purpose: We analyzed and retrospectively compared patients with and without intellectual disability (ID) who underwent oral surgery under general anesthesia at Istanbul University, Faculty of Dentistry, Department of General Anesthesia, between October 2012 and June 2013 with regard to the following ...

  1. Dementia in intellectual disability: a review of diagnostic challenges ...

    African Journals Online (AJOL)

    The evaluation of dementia in individuals with intellectual disability (ID), which will guide subsequent intervention, care and management depends on the systematic review of a number of factors: (1) the individual historical context, obtained from multiple sources, (2) evaluation of the pre-existing cognitive, behavioural, ...

  2. Review of Parent Training Interventions for Parents with Intellectual Disability

    Science.gov (United States)

    Wade, Catherine; Llewellyn, Gwynnyth; Matthews, Jan

    2008-01-01

    Background: This paper reviews recent research to provide an updated perspective on the effectiveness of parent training interventions for parents with intellectual disability. The degree to which these studies meet previous recommendations for future research is explored, particularly with regard to the influence of context on intervention…

  3. Parenting of children with borderline to mild intellectual disability

    NARCIS (Netherlands)

    Kleefman, Marijke

    2015-01-01

    Raising children with borderline to mild intellectual disability (BMID) may cause parenting stress, especially when the child with BMID has psychosocial problems. To improve support, it is important to have a better understanding of the effectiveness of interventions to reduce problems in raising

  4. Sexual Risk Assessment for People with Intellectual Disabilities

    Science.gov (United States)

    Embregts, P.; van den Bogaard, K.; Hendriks, L.; Heestermans, M.; Schuitemaker, M.; van Wouwe, H.

    2010-01-01

    Given that sexually offensive behavior on the part of people with intellectual disabilities has been identified as a significant problem, we developed a risk assessment questionnaire, that takes not only various static and dynamic factors into account but also environmental risk variables. Psychologists and staff members completed this Risk…

  5. Enabling Integration in Sports for Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Grandisson, Marie; Tetreault, Sylvie; Freeman, Andrew R.

    2012-01-01

    Background: Promoting the health and social participation of adolescents with intellectual disability is important as they are particularly vulnerable to encountering difficulties in those areas. Integration of these individuals in integrated sports is one strategy to address this issue. Methods: The main objective of this study was to gain a…

  6. Caregiver Attitudes to Gynaecological Health of Women with Intellectual Disability

    Science.gov (United States)

    Lin, Lan-Ping; Lin, Jin-Ding; Chu, Cordia M.; Chen, Li-Mei

    2011-01-01

    Background: There is little information available related to the reproductive health of people with intellectual disability (ID). The aims of the present study are to describe caregiver attitudes and to examine determinants of gynaecological health for women with ID. Method: We recruited 1152 caregivers (response rate = 71.87%) and analysed their…

  7. Including People with Intellectual Disabilities in Qualitative Research

    Science.gov (United States)

    Hall, Sarah A.

    2013-01-01

    The voice of people with intellectual disabilities (ID) is needed in the literature to best understand their unique experiences and perspectives. Researchers face challenges in conducting interviews with people with ID who are limited in conceptual and verbal language skills. It can also be difficult to obtain participants with ID because of…

  8. A Systematic Review of Suicidality in People with Intellectual Disabilities.

    Science.gov (United States)

    Dodd, Philip; Doherty, Ailbhe; Guerin, Suzanne

    2016-01-01

    Suicidality in people with intellectual disability has not been extensively researched. To identify the nature of the research that has actually been conducted on this topic. A search of research databases was conducted according to predefined criteria. Key information was extracted and rated for methodological merit. Twenty-four studies met the inclusion criteria for this systematic review. The aspects of suicidality investigated, which varied among studies, included suicidal attempts, behavior, ideation, and completed suicide. Thirteen studies highlighted risk factors for suicidality in this population. The most frequently noted risk factors were a concurrent mental health difficulty and the level of intellectual disability. Eight studies referred to people with intellectual disabilities' understanding of the concept of death or suicide. Various methodological issues were identified in the studies included. In what we believe to be first systematic review of suicidality in people with intellectual disabilities, it was apparent that well-designed, standardized research studies on the topic are scarce. There is consequently limited evidence to guide prevention and intervention strategies for suicidality in this population.

  9. Dementia in intellectual disability: a review of diagnostic challenges

    African Journals Online (AJOL)

    important in the context of rising life expectancies in this ... The evaluation of dementia in individuals with intellectual disability (ID), which will guide subsequent intervention, ... approach to the diagnosis of dementia in ID. .... reduced capacity for new learning. ..... mild memory decline, slightly shorter attention span, slower.

  10. Stability of cognitive performance in children with mild intellectual disability.

    Science.gov (United States)

    Jenni, Oskar G; Fintelmann, Sylvia; Caflisch, Jon; Latal, Beatrice; Rousson, Valentin; Chaouch, Aziz

    2015-05-01

    Longitudinal studies that have examined cognitive performance in children with intellectual disability more than twice over the course of their development are scarce. We assessed population and individual stability of cognitive performance in a clinical sample of children with borderline to mild non-syndromic intellectual disability. Thirty-six children (28 males, eight females; age range 3-19y) with borderline to mild intellectual disability (Full-scale IQ [FSIQ] 50-85) of unknown origin were examined in a retrospective clinical case series using linear mixed models including at least three assessments with standardized intelligence tests. Average cognitive performance remained remarkably stable over time (high population stability, drop of only 0.38 IQ points per year, standard error=0.39, p=0.325) whereas individual stability was at best moderate (intraclass correlation of 0.58), indicating that about 60% of the residual variation in FSIQ scores can be attributed to between-child variability. Neither sex nor socio-economic status had a statistically significant impact on FSIQ. Although intellectual disability during childhood is a relatively stable phenomenon, individual stability of IQ is only moderate, likely to be caused by test-to-test reliability (e.g. level of child's cooperation, motivation, and attention). Therefore, clinical decisions and predictions should not rely on single IQ assessments, but should also consider adaptive functioning and previous developmental history. © 2014 Mac Keith Press.

  11. Centres for People with Intellectual Disabilities: Attendees' Perceptions of Benefit

    Science.gov (United States)

    Gajewska, Urszula; Trigg, Richard

    2016-01-01

    Background: Day and community learning centres aim to provide intellectually disabled (ID) people with social support, life skills and greater control over their lives. However, there is little research exploring the benefits of attendance from the perspective of attendees and whether these goals are met. Materials and methods: Unstructured…

  12. Incidence of Dementia in Older Adults with Intellectual Disabilities

    Science.gov (United States)

    Strydom, Andre; Chan, Trevor; King, Michael; Hassiotis, Angela; Livingston, Gill

    2013-01-01

    Dementia may be more common in older adults with intellectual disability (ID) than in the general population. The increased risk for Alzheimer's disease in people with Down syndrome (DS) is well established, but much less is known about dementia in adults with ID who do not have DS. We estimated incidence rates from a longitudinal study of…

  13. Seizure detection using dynamic warping for patients with intellectual disability

    NARCIS (Netherlands)

    Wang, L.; Arends, J.B.A.M.; Long, X.; Wu, Y.; Cluitmans, P.J.M.

    2016-01-01

    Electroencephalography (EEG) is paramount for both retrospective analysis and real-time monitoring of epileptic seizures. Studies have shown that EEG-based seizure detection is very difficult for a specific epileptic population with intellectual disability due to the cerebral development disorders.

  14. Transition for Teenagers with Intellectual Disability: Carers' Perspectives

    Science.gov (United States)

    Bhaumik, Sabyasachi; Watson, Joanna; Barrett, Mary; Raju, Bala; Burton, Tracey; Forte, Jane

    2011-01-01

    Teenagers with intellectual disabilities (ID) have significantly more health problems than the rest of the population and many encounter difficulties accessing the services they need during the transition from children's to adult services. A multidisciplinary, interagency study was carried out in one area of the UK with the intent to estimate the…

  15. Hypertension, Hyperglycemia, and Hyperlipemia among Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Lin, Pei-Ying; Lin, Lan-Ping; Lin, Jin-Ding

    2010-01-01

    The present paper aims to assess the hypertension, hyperglycemia and hyperlipidemia prevalence of adolescents with intellectual disabilities, and to recognize the health disparities between the study participants and the general population. This study conducted a cross-sectional medical chart analysis of 856 students who participated in school…

  16. Learning capacity in adolescents with mild intellectual disabilities

    NARCIS (Netherlands)

    Tiekstra, Marlous; Hessels, Marco G P; Minnaert, Alexander E M G

    2009-01-01

    Scores on a learning potential test (the Hessels Analogical Reasoning Test) were examined to assess how to provide a better estimate of the learning capacity of students with mild intellectual disabilities compared to IQ scores. As a criterion, a dynamic test of chemistry learning was used. 46

  17. Age at Death in Individuals with Intellectual Disabilities

    Science.gov (United States)

    Arvio, Maria; Salokivi, Tommi; Bjelogrlic-Laakso, Nina

    2017-01-01

    Background: We aimed to ascertain the average age at death (AD) in the intellectual disability population for each gender and compare them to those of the general population during 1970-2012. Methods: By analysing medical records, we calculated the ADs of all deceased clients (N = 1236) of two district organizations responsible for intellectual…

  18. Motivational Aspects of Gaming for Students with Intellectual Disabilities

    Science.gov (United States)

    Saridaki, Maria; Mourlas, Constantinos

    2011-01-01

    The attention to learners with special needs, in particular those with intellectual disabilities, is an area of continuous development. It is considered important to develop adaptive educational solutions for the integration of people with educational difficulties according to their needs. Digital games provide an attractive and direct platform in…

  19. Pre-Partum Distress in Women with Intellectual Disabilities

    Science.gov (United States)

    McConnell, David; Mayes, Rachel; Llewellyn, Gwynnyth

    2008-01-01

    Background: This study investigates depression, anxiety and stress in pregnant women with intellectual disabilities and/or self-reported learning difficulties, and examines the association between these negative emotional states and perceived support and conflict in the women's interpersonal relationships. Method: Eight-hundred-and-seventy-eight…

  20. The Sexuality of Adults with Intellectual Disability in Poland.

    Science.gov (United States)

    Kijak, Remigiusz

    2013-06-01

    Sexuality is one of the most important aspects of human life that relates to sex, one's identification, sexual role, sexual preferences, eroticism, pleasure and intimacy. It fulfils such functions as procreative, hedonistic and relationship-building as well as constitutes an integral part of human's personality. The sexuality of people with intellectual disability is a special case - both from medical, pedagogical, psychological and ethical point of view. Little available research shows that it may become a significant factor that modifies their psychological and sexual functioning. The basic poll involved altogether 133 people with mild intellectual disability. The work was carried out in 11 schools and special institutions of three provinces in Poland: kujawsko - pomorskie, wielkopolskie and dolnośląskie (provinces of Kujavy and Pomerania, Great Poland and Lower Silesia) The respondents qualified to take part in the poll constituted a very uniform group - homogenous as regards their age of 18-25 as well as IQ level that was average for the people with higher degree of intellectual disability (HDID). Their age was of importance as in that life period one can observe the formation of first partner relationships with the clear aim of establishing a family. It is accompanied by a quick development of sexual desire and taking up various forms of sexual activity. People with intellectual disability don't form a homogenous group as regards their psychological and sexual development. In this group, one can observe both different forms of clinical mental handicap which definitely affects the whole process of sexual development. The sexual development is delayed by an average period of 3 years. The people with intellectual disability take up mostly autoerotic behaviour whereas partner relationships wthin that group are more seldom. The phenomenon of sexuality of people with higher degree of intellectual disability is an issue that needs further constant analysis. The

  1. Central nervous system medication use in older adults with intellectual disability: Results from the successful ageing in intellectual disability study.

    Science.gov (United States)

    Chitty, Kate M; Evans, Elizabeth; Torr, Jennifer J; Iacono, Teresa; Brodaty, Henry; Sachdev, Perminder; Trollor, Julian N

    2016-04-01

    Information on the rates and predictors of polypharmacy of central nervous system medication in older people with intellectual disability is limited, despite the increased life expectancy of this group. This study examined central nervous system medication use in an older sample of people with intellectual disability. Data regarding demographics, psychiatric diagnoses and current medications were collected as part of a larger survey completed by carers of people with intellectual disability over the age of 40 years. Recruitment occurred predominantly via disability services across different urban and rural locations in New South Wales and Victoria. Medications were coded according to the Monthly Index of Medical Specialties central nervous system medication categories, including sedatives/hypnotics, anti-anxiety agents, antipsychotics, antidepressants, central nervous system stimulants, movement disorder medications and anticonvulsants. The Developmental Behaviour Checklist for Adults was used to assess behaviour. Data were available for 114 people with intellectual disability. In all, 62.3% of the sample was prescribed a central nervous system medication, with 47.4% taking more than one. Of those who were medicated, 46.5% had a neurological diagnosis (a seizure disorder or Parkinson's disease) and 45.1% had a psychiatric diagnosis (an affective or psychotic disorder). Linear regression revealed that polypharmacy was predicted by the presence of neurological and psychiatric diagnosis, higher Developmental Behaviour Checklist for Adults scores and male gender. This study is the first to focus on central nervous system medication in an older sample with intellectual disability. The findings are in line with the wider literature in younger people, showing a high degree of prescription and polypharmacy. Within the sample, there seems to be adequate rationale for central nervous system medication prescription. Although these data do not indicate non-adherence to

  2. Obesity in adolescents with intellectual disability: Prevalence and associated characteristics.

    Science.gov (United States)

    Krause, Sharon; Ware, Robert; McPherson, Lyn; Lennox, Nicholas; O'Callaghan, Michael

    Studies from a number of countries have indicated an increased risk of obesity in adolescents with intellectual disability. Whether risk factors for adults with intellectual disability apply to adolescents however is uncertain. This study examines obesity in a community sample of adolescents with intellectual disability in Australia, and investigates risk factors associated with obesity and overweight. A cross-sectional survey and medical record review on 261 adolescents with intellectual disability attending special education facilities in South-East Queensland, Australia between January 2006 and September 2010 was conducted. Information on age, gender, weight, height, syndrome specific diagnoses, problematic behaviours, mobility, taking psychotropic or epileptic medication, and perceived household financial difficulties was collected. Body mass index (BMI) was calculated and participants categorised as normal/underweight, overweight or obese according to the International Obesity Taskforce definitions. Overall 22.5% (95% CI: 17.8-28.0%) of adolescents were obese, and 23.8% (95% CI: 19.0-29.4%) were overweight, a marked increase compared to Australian norms. Adolescents with Down syndrome were more likely to be obese than other participants (odds ratio=3.21; 95% CI: 1.41-7.30). No association was found with other risk factors examined. Prevalence of obesity and overweight were increased compared to general Australian adolescents. The only significant risk factor was the presence of Down syndrome. These findings reinforce the need for a health policy and practice response to obesity that is inclusive of individuals with intellectual disability. Copyright © 2015 Asia Oceania Association for the Study of Obesity. Published by Elsevier Ltd. All rights reserved.

  3. [Occupational burdens in special educators working with intellectually disabled students].

    Science.gov (United States)

    Plichta, Piotr

    2014-01-01

    The article presents the results of psychosocial burdens in special educators (specialists in the field of oligophrenopedagogy) with intellectually disabled students. In theoretical part, specific context of occupational stress in special educators was introduced. Additionally, the need of broader research context regarding occupational stress and the risk of burnout in special educators working with intellectually disabled individuals were included. The results were obtained using Plichta and Pyzalski's Questionnaire of Occupational Burdens in Teaching (QOBT). The presented results are based on a research sample (N = 100) of special educators (female) teaching intellectually disabled students attending special schools in the city of Lódz. The obtained results were compared with the results coming from a large random sample of public school teachers working with non-intellectually disabled children from the Lodi voivodeship (N = 429) and referred to the norms of QOBT. The results show significant percentage of respondents obtaining high level of occupational burdens (conflict situations - 45%, organizational burdens - 31%, lack of work sense - 40%, global score - 40%). Seniority is not related to the level of burdens. Some significant differences concerning the level of occupational burdens between both groups of teachers were found. The study showed e.g. the strong need for supporting special educators in the workplace context and the need of implementing preventive and remedial measures at both individual and organizational levels (especially in terms of improving personal relationships in a workplace). Generally, the results show similarity of the stressors' ranking in special educators and school teachers working with non-intellectually disabled children.

  4. Occupational burdens in special educators working with intellectually disabled students

    Directory of Open Access Journals (Sweden)

    Piotr Plichta

    2014-04-01

    Full Text Available Background: The article presents the results of psychosocial burdens in special educators (specialists in the field of oligophrenopedagogy with intellectually disabled students. In theoretical part, specific context of occupational stress in special educators was introduced. Additionally, the need of broader research context regarding occupational stress and the risk of burnout in special educators working with intellectually disabled individuals were included. Material and Methods: The results were obtained using Plichta and Pyżalski's Questionnaire of Occupational Burdens in Teaching (QOBT. The presented results are based on a research sample (N = 100 of special educators (female teaching intellectually disabled students attending special schools in the city of Łódź. The obtained results were compared with the results coming from a large random sample of public school teachers working with non-intellectually disabled children from the Łodź voivodeship (N = 429 and referred to the norms of QOBT. Results: The results show significant percentage of respondents obtaining high level of occupational burdens (conflict situations - 45%, organizational burdens - 31%, lack of work sense - 40%, global score - 40%. Seniority is not related to the level of burdens. Some significant differences concerning the level of occupational burdens between both groups of teachers were found. Conclusions: The study showed e.g. the strong need for supporting special educators in the workplace context and the need of implementing preventive and remedial measures at both individual and organizational levels (especially in terms of improving personal relationships in a workplace. Generally, the results show similarity of the stressors' ranking in special educators and school teachers working with non-intellectually disabled children. Med Pr 2014;65(2:239–250

  5. Residential Transitions among Adults with Intellectual Disability across 20 Years

    Science.gov (United States)

    Woodman, Ashley C.; Mailick, Marsha R.; Anderson, Kristy A.; Esbensen, Anna J.

    2014-01-01

    The present study addresses critical gaps in the literature by examining residential transitions among 303 adults with intellectual disability over 10 years (Part 1) and 75 adults with Down syndrome over 20 years (Part 2). All adults lived at home at the start of the study, but many moved to a variety of settings. Several characteristics of the adults with intellectual disability differed across settings, most notably adaptive behavior and the number of residential transitions, while characteristics such as age, type of disability, and behavior problems were less predictive of residential placements. The number of moves over the course of the study varied widely, with critical links to earlier family dynamics, social relationships, and health and adaptive behavior. PMID:25354121

  6. Intellectual disability, consumerism and identity: to have and have not?

    Science.gov (United States)

    McClimens, Alex; Hyde, Martin

    2012-06-01

    Here we consider the consumer society as it currently exists in the UK and examine its relationship and relevance to the population of individuals with intellectual disability. We do this through a reading of the associated literature on theories of shopping and consumption which we then contrast with research evidence as it applies to the lives of people with intellectual disability. By brining together these two perspectives we hope to shine some light on ideas around identity and choice. We then transfer these arguments to the health and social care sector. Here we ask whether an economic model which has been exposed as divisive and exclusionary should be used in the administration of social secutity benefits of the kind accesed by people with a range of disabilities. We conclude that the unchallenged advance of marketisation within health and social care may benefit those who are financially able but for those who are economically disadvantaged the choices offered are illusory at best.

  7. Setting Global Research Priorities for Developmental Disabilities, Including Intellectual Disabilities and Autism

    Science.gov (United States)

    Tomlinson, M.; Yasamy, M. T.; Emerson, E.; Officer, A.; Richler, D.; Saxena, S.

    2014-01-01

    Objectives: The prevalence of intellectual disabilities (ID) has been estimated at 10.4/1000 worldwide with higher rates among children and adolescents in lower income countries. The objective of this paper is to address research priorities for development disabilities, notably ID and autism, at the global level and to propose the more rational…

  8. Does visual impairment lead to additional disability in adults with intellectual disabilities?

    NARCIS (Netherlands)

    Sjoukes, L.; Koot, H. M.; Kooijman, A. C.; Evenhuis, H.

    This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with observant-based

  9. Does visual impairment lead to additional disability in adults with intellectual disabilities?

    NARCIS (Netherlands)

    Evenhuis, H.M.; Sjoukes, L.; Koot, H.M.; Kooijman, A.C.

    2009-01-01

    Background: This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). Method: In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with

  10. Aged and Dependency Ratios among Autism, Intellectual Disability and Other Disabilities: 10-Year Trend Analysis

    Science.gov (United States)

    Lin, Jin-Ding; Lin, Lan-Ping; Sung, Chang-Lin; Wu, Jia-Ling

    2011-01-01

    Dependency ratios are useful as general indicators of future economic and social health. The present paper focuses on the description of dependency ratios and over time change in different kind of disability which include autism, intellectual disability, vision, hearing, and limb impairments. We analyzed data mainly from the public web-access…

  11. Executive Function in Children with Intellectual Disability--The Effects of Sex, Level and Aetiology of Intellectual Disability

    Science.gov (United States)

    Memisevic, H.; Sinanovic, O.

    2014-01-01

    Background: Executive function is very important in the children's overall development. The goal of this study was to assess the executive function in children with intellectual disability (ID) through the use of the Behavior Rating Inventory of Executive Function (BRIEF) teacher version. An additional goal was to examine the differences in…

  12. Prevalence and outcomes of heart transplantation in children with intellectual disability.

    Science.gov (United States)

    Wightman, Aaron; Bartlett, Heather L; Zhao, Qianqian; Smith, Jodi M

    2017-03-01

    Heart transplantation in children with intellectual disability is a controversial issue. We sought to describe the prevalence and outcomes of heart transplantation in children with intellectual disability and hypothesized that recipients with intellectual disability have comparable short-term outcomes compared to recipients without intellectual disability. We performed a retrospective cohort analysis of children receiving a first heart-alone transplant in the UNOS STAR database from 2008 to 2013. Recipients with intellectual disability were compared to those without using chi-square tests. Kaplan-Meier curves were constructed for patient and graft survival. Cox proportional hazard models were used to estimate the association between intellectual disability and graft failure and patient survival. Over the study period, 107 children with intellectual disability underwent initial heart transplantation, accounting for 8.9% of first pediatric heart transplants (total=1204). There was no difference in the incidence of acute rejection between groups in the first year after transplant. Mean functional status scores at follow-up improved in both groups after transplantation, but tended to be lower among children with intellectual disability than children without. Log-rank tests did not suggest significant differences in graft survival between those with and without intellectual disability during the first 4 years following transplantation. Children with intellectual disability constitute a significant portion of total heart transplants with short-term outcomes comparable to children without intellectual disability. © 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

  13. Self-Esteem of Greek Mothers of Children with Intellectual Disabilities.

    Science.gov (United States)

    Argyrakouli, Effi; Zafiropoulou, Maria

    2003-01-01

    This study examined the self-esteem of 50 mothers of children with intellectual disabilities living in central Greece and 50 similar mothers of non-disabled children. Results indicated significantly lower self-esteem for mothers of children with intellectual disabilities. The best predictor of positive maternal self-esteem in the disabled group…

  14. A narrative review of acute care nurses' experiences nursing patients with intellectual disability: underprepared, communication barriers and ambiguity about the role of caregivers.

    Science.gov (United States)

    Lewis, Peter; Gaffney, Ryan J; Wilson, Nathan J

    2017-06-01

    To describe how nurses experience caring for people with intellectual disability in an acute care setting. Recent advances in the care of people with intellectual disability in hospital are primarily based upon the experiences of people with intellectual disability and their caregivers. Little is known about the experiences of registered nurses caring for people with intellectual disability, yet the experiences of nurses in delivering care largely determine the quality of care experienced by people with intellectual disability and their caregivers. A narrative literature review using electronic database searches was conducted using variants of the terms disability, nursing and acute care. Through our reading of the recent literature describing the experiences of nurses caring for people with intellectual disability in an acute care setting, we have identified three themes: (1) nurses feel underprepared when caring for patients with intellectual disability, (2) nurses experience challenges when communicating with people with intellectual disability and (3) nurses have ambiguous expectations of paid and unpaid caregivers. The enablers of and barriers to the delivery of nursing care in acute care settings need to be made explicit and researchers and nurses need to collaborate in the development, implementation and evaluation of care delivery strategies. Nurses need to be adequately prepared to care for people with intellectual disability. Preparation should include dealing with the complexities of communicating with people with intellectual disability and practical experience of doing so in clinical and educational environments that ensure the safety and dignity of nurses and people with intellectual disability. Nurses need supportive strategies for developing therapeutic relationships with a range of informal and formal caregivers. © 2016 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd.

  15. Twenty-Five Year Survival of Children with Intellectual Disability in Western Australia.

    Science.gov (United States)

    Bourke, Jenny; Nembhard, Wendy N; Wong, Kingsley; Leonard, Helen

    2017-09-01

    To investigate survival up to early adulthood for children with intellectual disability and compare their risk of mortality with that of children without intellectual disability. This was a retrospective cohort study of all live births in Western Australia between January 1, 1983 and December 31, 2010. Children with an intellectual disability (n = 10 593) were identified from the Western Australian Intellectual Disability Exploring Answers Database. Vital status was determined from linkage to the Western Australian Mortality database. Kaplan-Meier product limit estimates and 95% CIs were computed by level of intellectual disability. Hazard ratios (HRs) and 95% CIs were calculated from Cox proportional hazard regression models adjusting for potential confounders. After adjusting for potential confounders, compared with those without intellectual disability, children with intellectual disability had a 6-fold increased risk of mortality at 1-5 years of age (adjusted HR [aHR] = 6.0, 95%CI: 4.8, 7.6), a 12-fold increased risk at 6-10 years of age (aHR = 12.6, 95% CI: 9.0, 17.7) and a 5-fold increased risk at 11-25 years of age (aHR = 4.9, 95% CI: 3.9, 6.1). Children with severe intellectual disability were at even greater risk. No difference in survival was observed for Aboriginal children with intellectual disability compared with non-Aboriginal children with intellectual disability. Although children with intellectual disability experience higher mortality at all ages compared with those without intellectual disability, the greatest burden is for those with severe intellectual disability. However, even children with mild to moderate intellectual disability have increased risk of death compared with unaffected children. Copyright © 2017 Elsevier Inc. All rights reserved.

  16. Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support.

    Science.gov (United States)

    Dodd, Karen; Watchman, Karen; Janicki, Matthew P; Coppus, Antonia; Gaertner, Claudia; Fortea, Juan; Santos, Flavia H; Keller, Seth M; Strydom, Andre

    2017-09-07

    Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death. An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services. The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person's needs as dementia progresses. Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

  17. Intellectual disability in Africa: implications for research and service development.

    Science.gov (United States)

    McKenzie, Judith Anne; McConkey, Roy; Adnams, Colleen

    2013-09-01

    Although intellectual disability (ID) is probably the largest impairment grouping on the African continent, few indigenous research and evaluation studies have been undertaken. This article is an initial attempt to relate service delivery issues to an African research agenda. We critically analysed the available literature, drawing on academic publications and those of non-governmental agencies. In this process we identified several key issues for further investigation, namely: understanding ID in African contexts, access to education and health care, the provision of appropriate assistance and support, and income generation. We relate our analysis to the recommendations made in the World Report on Disability but with a specific focus on ID in Africa. The need for mainstreaming and prioritising ID in non-disability related and across impairment programmes is highlighted. We note the importance of families and emphasise the need to draw on informal and traditional forms of care and participation. The need for reliable research evidence to support practice is highlighted. We conclude with a call to action by and on behalf of individuals with ID to be included in the development priorities of the continent. Implications for Rehabilitation Service provision for people with intellectual disabilities in Africa is not always well served by insights obtained from western research agendas. Appropriate and effective rehabilitation requires an understanding of the context and the environment in which the disabled person operates. Indigenous research into the provision of support to families and the inclusion of persons with intellectual disability into mainstream programmes as well as disability specific provision is recommended.

  18. Narrative ethics in nursing for persons with intellectual disabilities.

    Science.gov (United States)

    Meininger, Herman P

    2005-04-01

    Both in The Netherlands and in Britain, practices of 'life story work' have emerged in nursing for persons with intellectual disabilities. The narrative approach to care and support may at the same time be considered as an attempt to compensate for the 'disabled authorship' of many persons with intellectual disabilities and as a sign of controversy with standard practices of diagnosis and treatment that tend to neglect the personal identities of both clients and care givers, their particular historical and relational contexts and their spiritual needs. This paper argues that narrative ethics not only offers an appropriate moral framework for practices of life story work, but that these practices are a narrative ethics in action. Starting with an account of the concept of 'life story work' as it has been introduced in nursing practices in the field of intellectual disability, the paper explains its relationship with key characteristics of narrative ethics. The teleological dimension in narrative ethics and in practices of life story work sparks off a dialectic process of understanding of the client and self-understanding of the care giver. It also invites a respect for life in its openness toward the future and presupposes an openness toward other possible versions of the life narrative. The phenomenological and hermeneutic-interpretative methodologies in narrative ethics aim at a 'sudden moment of intimacy' in relationships of nurses and clients. The 'epiphany' of this essential moment of recognition, insight and engagement cannot, however, be brought about by methodology.

  19. A review of suicidality in persons with intellectual disability.

    Science.gov (United States)

    Merrick, Joav; Merrick, Efrat; Lunsky, Yona; Kandel, Isack

    2006-01-01

    It has been assumed that impaired intellectual capacity could act as a buffer to suicidality in the population of persons with intellectual disability (ID), developmental disability or mental retardation. The few studies conducted contest this assumption and in fact findings show that the characteristics of suicidality in that population were very similar to that in persons without intellectual disability. This paper reviews the studies conducted and describes the symptomatology in this population, risk factors, screening and intervention. Professionals working with this population should therefore be aware of and assess for this behavior, since in one study it was found that many caregivers were unaware of suicidality in their clients. Only two studies had systematically examined differences between suicidal and non-suicidal individuals with ID with regard to risk factors. Risk factors found were history of prior psychiatric hospitalization, comorbid physical disabilities, loneliness, sadness, depression or anxiety. There is limited research on intervention for suicidal behavior in the ID population, but professionals should consider risk factors for suicide in this population and intervene when suicidal risk/behavior is found.

  20. A survey on awareness of parents about friendship between their children with an intellectual disability and children without a disability

    OpenAIRE

    渋谷, 真二; 今野, 和夫; SHIBUYA, Shinji; KONNO, Kazuo

    2009-01-01

    The awareness of parents about friendship between their children with an intellectual disability and children without a disability is an important factor for their children to make friends without a disability. A questionnare survey was used to parents of upper secondary department of special schools for students with an intellectual disability. They thought that their children had fewer opportunities to get involved with children without a disability. Many of them wished that their children ...

  1. The World Report on Disability and People with Intellectual Disabilities

    Science.gov (United States)

    Officer, Alana; Shakespeare, Tom

    2013-01-01

    The "World Report on Disability" was requested by the World Health Assembly, the governing body of the World Health Organization (WHO). Because disability is broader than health, WHO partnered with the World Bank. The "World Report" was published in 2011 and provides a comprehensive scientific analysis on the global situation…

  2. "It Is Only Natural….": Attitudes of Young People with Intellectual Disabilities toward Sexuality in Greece

    Science.gov (United States)

    Karellou, Ioanna

    2017-01-01

    Although there is an increasing awareness of the rights of people with intellectual disabilities, limited progress has been made in supporting people with intellectual disabilities to create and sustain intimate personal relationships in Greece. This article looks at the attitudes of 66 adolescents and young adults with intellectual disabilities…

  3. EDUCATIONAL POLICIES AND PRACTICAL IMPLICATIONS FOR CHILDREN WITH INTELLECTUAL DISABILITY IN REPUBLIC OF MACEDONIA

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    Aleksandra Karovska Ristovska

    2017-12-01

    Full Text Available Educational policy for children with intellectual disability in Republic of Macedonia is not always consistent with the practical implications. The subject of this research was to gain an insight into the current condition of the persons with intellectual disabilities in Macedonia, before all an insight into the barriers that they are facing in their attempts to access educational information and services. This was done through conducting a qualitative (desk-top analyses of the national legislations; semi-structured interviews with parents of persons with intellectual disabilities and focus groups with relevant stakeholders and a quantitative research (quality of life research for the disabled persons. In the research a total number of 213 examinees were included. As in many other cases, and in many other countries, policy and practice are not always coherent. Legislation in the area of education in our country has to be modified and accommodated to the needs of the persons with disabilities and their parents or care-givers. The final conclusion from our research is that the persons with ID are still on the margins of society, and they lead everyday battles to prove that their needs must be taken into consideration in context of their human rights. Although awareness for the importance of the rightful treatment of this problem is not on a satisfactory level, still we can notice a shift in perception and liberation of prejudice.

  4. Current evidence on antenatal care provision for women with intellectual disabilities: A systematic review.

    Science.gov (United States)

    Homeyard, Claire; Montgomery, Elsa; Chinn, Deborah; Patelarou, Evridiki

    2016-01-01

    changing attitudes, alongside integration, more independent living and recognition of rights to family life have meant a steady rise in women with intellectual disabilities becoming pregnant. However, existing evidence shows that women with intellectual disabilities are less likely to seek or attend for regular antenatal care. This population experiences poorer maternal wellbeing and worse pregnancy outcomes compared to the general population, including preterm and low-birthweight babies. to identify and review the existing evidence on the provision of antenatal care among women with intellectual disabilities. a systematic search strategy was formulated using key Medical Sub-Headings terms and related text words for pregnancy, antenatal care and intellectual disability. Comprehensive searches dating back to 1980 using pre-determined criteria followed by a hand search of reference lists and citations were undertaken. Data were extracted using a data extraction form and methodological quality assessed using the framework developed by Caldwell et al. (2011). A three stage textual narrative synthesis was used to integrate the findings from the included studies. searches identified 16 papers that met the inclusion criteria. A majority of the papers focused on women's experience of pregnancy and antenatal care with a paucity of papers identified on midwives knowledge and experience. The four broad themes of the analysis and synthesis performed included: In the Family Way ('I've a baby inside. I've got a life inside of me.׳); Knowledge and advocacy ('...everyone was looking at one another and no one was talking to me...'); Midwives educational needs ('...helpful to have guidance...') and Midwives Attitudes ('...women with [intellectual disabilities]...should not be pregnant'). significant gaps in the evidence base were apparent, however evidence was identified which showed that intellectually disabled pregnant women struggle to understand antenatal information

  5. Feasibility of Eight Physical Fitness Tests in 1,050 Older Adults with Intellectual Disability : Results of the Healthy Ageing with Intellectual Disabilities Study

    NARCIS (Netherlands)

    Hilgenkamp, Thessa I. M.; van Wijck, Ruud; Evenhuis, Heleen M.

    Although physical fitness is relevant for well-being and health, knowledge on the feasibility of instruments to measure physical fitness in older adults with intellectual disability (ID) is lacking. As part of the study Healthy Ageing with Intellectual Disabilities with 1,050 older clients with ID

  6. Feasibility of Eight Physical Fitness Tests in 1,050 Older Adults with Intellectual Disability: Results of the Healthy Ageing with Intellectual Disabilities Study

    Science.gov (United States)

    Hilgenkamp, Thessa I. M.; van Wijck, Ruud; Evenhuis, Heleen M.

    2013-01-01

    Although physical fitness is relevant for well-being and health, knowledge on the feasibility of instruments to measure physical fitness in older adults with intellectual disability (ID) is lacking. As part of the study Healthy Ageing with Intellectual Disabilities with 1,050 older clients with ID in three Dutch care services, the feasibility of 8…

  7. Developing Reception Competence in Children with a Mild Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Ana Koritnik

    2015-06-01

    Full Text Available The paper presents research paradigms which study factors that allow influencing the language development of children with mild intellectual disabilities to the greatest extent possible. Special attention is dedicated to the development of the reception competence with the use of reception didactics methods based on a relatively frequent use of less demanding non-language semiotic functions. The core of the paper presents results of an experimental case study (on a sample of five children with a mild intellectual disability over a one school year period, through which the reception competence in these children was developed with a systematic use of an adapted communication model of literary education as an experimental factor. The results have confirmed the initially set hypothesis about reception progress.

  8. A study on mobility improvement for intellectually disabled student commuters

    Directory of Open Access Journals (Sweden)

    Fumihiko Nakamura

    2017-07-01

    Overall, our findings suggested that to actually implement mobility support in school commuting environments in a way that will improve the mobility of intellectually disabled people requires not only the cooperation of schools, but also contributions from transport operators, road administrators, and traffic administrators. Because the contributions of these entities are essential, awareness-raising activities and a system for promoting common understanding among them are vital.

  9. Gait Transitions of Persons with and without Intellectual Disability

    Science.gov (United States)

    Agiovlasitis, Stamatis; Yun, Joonkoo; Pavol, Michael J.; McCubbin, Jeffrey A.; Kim, So-Yeun

    2008-01-01

    This study examined whether the walk-to-run transition speed (W-RTS) and the run-to-walk transition speed (R-WTS) were different or more variable between participants with and without intellectual disability (ID). Nine adults with ID and 10 adults without ID completed in a series of walk-to-run and run-to-walk trials on a treadmill. W-RTS and…

  10. Neuromuscular fatigue and recovery profiles in individuals with intellectual disability

    OpenAIRE

    Borji , Rihab; Zghal , Firas; Zarrouk , Nidhal; Martin , Vincent; Sahli , Sonia; Rebai , Haithem

    2017-01-01

    International audience; Purpose: This study aimed to explore neuromuscular fatigue and recovery profiles in individuals with intellectual disability (ID) after exhausting submaximal contraction.Methods: Ten men with ID were compared to 10 men without ID. The evaluation of neuromuscular function consisted in brief (3 s) isometric maximal voluntary contraction (IMVC) of the knee extension superimposed with electrical nerve stimulation before, immediately after, and during 33 min after an exhaus...

  11. Forensic aspects of intellectual disabilities and autism spectrum disorders

    OpenAIRE

    Nugent, Stella

    2016-01-01

    Overview This thesis reviewed forensic aspects of Intellectual Disabilities (ID) and Autism Spectrum Disorder (ASD). Chapter two was a case study where an individual with ID and ASD who exhibited forensic/Challenging Behaviour (CB) was assessed and intervention offered. Chapter three then focussed on the assessment of people with ID and ASD by critiquing the Wechsler Adult Intelligence Scale (WAIS), version 3 and 4 (WAIS-III & WAIS-IV) (Wechsler, 1997; Wechsler, 2008a, 2008b, 2008c) and ...

  12. Parenting of children with borderline to mild intellectual disability

    OpenAIRE

    Kleefman, Marijke

    2015-01-01

    Raising children with borderline to mild intellectual disability (BMID) may cause parenting stress, especially when the child with BMID has psychosocial problems. To improve support, it is important to have a better understanding of the effectiveness of interventions to reduce problems in raising such children and of the problems these parents are dealing with. Therefore, the aim of this thesis was to assess the effectiveness of the parenting support program Stepping Stones Triple P (SSTP). F...

  13. Comparison of Measures of Ability in Adolescents with Intellectual Disability

    OpenAIRE

    Mungkhetklang, Chantanee; Crewther, Sheila G.; Bavin, Edith L.; Goharpey, Nahal; Parsons, Carl

    2016-01-01

    Finding the most appropriate intelligence test for adolescents with Intellectual Disability (ID) is challenging given their limited language, attention, perceptual, and motor skills and ability to stay on task. The study compared performance of 23 adolescents with ID on the Wechsler Intelligence Scale for Children-Fourth Edition (WISC-IV), one of the most widely used intelligence tests, and three non-verbal IQ tests, the Raven's Colored Progressive Matrices (RCPM), the Test of Non-verbal Inte...

  14. Role of nucleosome remodeling in neurodevelopmental and intellectual disability disorders

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    Alberto J Lopez

    2015-04-01

    Full Text Available It is becoming increasingly important to understand how epigenetic mechanisms control gene expression during neurodevelopment. Two epigenetic mechanisms that have received considerable attention are DNA methylation and histone acetylation. Human exome sequencing and genome-wide association studies have linked several neurobiological disorders to genes whose products actively regulate DNA methylation and histone acetylation. More recently, a third major epigenetic mechanism, nucleosome remodeling, has been implicated in human developmental and intellectual disability disorders. Nucleosome remodeling is driven primarily through nucleosome remodeling complexes with specialized ATP-dependent enzymes. These enzymes directly interact with DNA or chromatin structure, as well as histone subunits, to restructure the shape and organization of nucleosome positioning to ultimately regulate gene expression. Of particular interest is the neuron-specific Brg1/hBrm Associated Factor (nBAF complex. Mutations in nBAF subunit genes have so far been linked to Coffin-Siris syndrome, Nicolaides-Baraitser syndrome, schizophrenia, and Autism Spectrum Disorder. Together, these human developmental and intellectual disability disorders are powerful examples of the impact of epigenetic modulation on gene expression. This review focuses on the new and emerging role of nucleosome remodeling in neurodevelopmental and intellectual disability disorders and whether nucleosome remodeling affects gene expression required for cognition independently of its role in regulating gene expression required for development.

  15. NDST1 missense mutations in autosomal recessive intellectual disability.

    Science.gov (United States)

    Reuter, Miriam S; Musante, Luciana; Hu, Hao; Diederich, Stefan; Sticht, Heinrich; Ekici, Arif B; Uebe, Steffen; Wienker, Thomas F; Bartsch, Oliver; Zechner, Ulrich; Oppitz, Cornelia; Keleman, Krystyna; Jamra, Rami Abou; Najmabadi, Hossein; Schweiger, Susann; Reis, André; Kahrizi, Kimia

    2014-11-01

    NDST1 was recently proposed as a candidate gene for autosomal recessive intellectual disability in two families. It encodes a bifunctional GlcNAc N-deacetylase/N-sulfotransferase with important functions in heparan sulfate biosynthesis. In mice, Ndst1 is crucial for embryonic development and homozygous null mutations are perinatally lethal. We now report on two additional unrelated families with homozygous missense NDST1 mutations. All mutations described to date predict the substitution of conserved amino acids in the sulfotransferase domain, and mutation modeling predicts drastic alterations in the local protein conformation. Comparing the four families, we noticed significant overlap in the clinical features, including both demonstrated and apparent intellectual disability, muscular hypotonia, epilepsy, and postnatal growth deficiency. Furthermore, in Drosophila, knockdown of sulfateless, the NDST ortholog, impairs long-term memory, highlighting its function in cognition. Our data confirm NDST1 mutations as a cause of autosomal recessive intellectual disability with a distinctive phenotype, and support an important function of NDST1 in human development. © 2014 Wiley Periodicals, Inc.

  16. PHYSICAL AND SPORT ACTIVITIES OF INTELLECTUALLY DISABLED INDIVIDUALS

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    Zoran Stanišić

    2012-06-01

    Full Text Available The low level of physical fitness of intellectually disabled individuals is most often the result of a sedentary lifestyle and the lack of the possibility for these individuals to take part in various forms of physical activity, and as a consequence these individuals are often unable to take part in any form of planned physical activities, are unable to adequately perform everyday activities and have limited abilities for performing workrelated duties. Regular physical activity can have a preventive effect, can reduce health risks and prevent the onset of various illnesses, as well as to promote an active lifestyle and increase physical and work capacities among the members of this particular population. Sport can play an important role in the life of individuals with intellectual disability as it represents a good basis for the development of physical and cognitive abilities. Team sports, which include interaction among a large number of people, a decision-making processes in a variety of situations and the understanding of the game itself in its constituent parts can be used as an effective and practical treatment of individuals with intellectual disability.

  17. Expectations from different perspectives on future work outcome of young adults with intellectual and developmental disabilities

    NARCIS (Netherlands)

    Holwerda, Anja; Brouwer, Sandra; de Boer, Michiel R.; Groothoff, Johan W.; van der Klink, Jac J. L.

    2015-01-01

    Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental

  18. Expectations from Different Perspectives on Future Work Outcome of Young Adults with Intellectual and Developmental Disabilities

    NARCIS (Netherlands)

    Holwerda, A.; Brouwer, S.; de Boer, M.R.; Groothoff, J.W.; van der Klink, J.J.L.

    2015-01-01

    Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental

  19. Expectations from Different Perspectives on Future Work Outcome of Young Adults with Intellectual and Developmental Disabilities

    NARCIS (Netherlands)

    Holwerda, Anja; Brouwer, Sandra; de Boer, Michiel R.; Groothoff, Johan W.; van der Klink, Jac J. L.

    Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental

  20. Understanding suicide and disability through three major disabling conditions: Intellectual disability, spinal cord injury, and multiple sclerosis.

    Science.gov (United States)

    Giannini, Margaret J; Bergmark, Brian; Kreshover, Samantha; Elias, Eileen; Plummer, Caitlin; O'Keefe, Eileen

    2010-04-01

    Disability is not a category of disease but rather relates to the physical, sensory, cognitive, and/or mental disorders that substantially limit one or more major life activities. These functional limitations have been found to be predictive of suicide, with psychiatric comorbidities increasing the risk for suicide. Enormous gaps exist in the understanding of the relationship between disability and suicide. We reviewed the current literature addressing the prevalence of and risk factors for suicide among persons with three major disabling conditions and identify priorities for future research. We performed a literature review investigating the relationship between three major disabilities (intellectual disability, spinal cord injury, multiple sclerosis) and suicide. To ensure thorough evaluation of the available literature, we searched PubMed, the Cochrane Library, and Google Scholar with terms including "suicide," "disability," "intellectual disability," "spinal cord injury," "multiple sclerosis," and permutations thereof. By this method we evaluated 110 articles and included 21 in the review. Suicide rates are significantly higher among persons with multiple sclerosis and spinal cord injury than in the general population. A more nuanced picture of suicide rates and risk factors exists for the intellectual disability population, in which it appears that rates of suicide risk factors are higher than among the general population while suicide rates may be lower. The highest rates of suicide are reported among study populations of persons with multiple sclerosis, followed by persons with spinal cord injury, and then individuals with intellectual disability. Suicide among persons with disabilities is a complex and pressing public health concern. Urgent research priorities include (1) valid estimates of suicide rates among persons with disabilities by age cohort; (2) assessment of the predictive importance of suicide risk factors; and (3) determination of best

  1. Prevalence of Overweight and Obesity in Children with Intellectual Disabilities in Korea

    Science.gov (United States)

    Choi, Eunsook; Park, HyunJu; Ha, Yeongmi; Hwang, Won Ju

    2012-01-01

    Background: Overweight and obesity in children with intellectual disabilities may be a major health threat. The purpose of this study was to examine the prevalence of overweight and obesity in Korean children with intellectual disabilities aged 7-18 years who did not have specific genetic syndromes or physical disabilities. Materials and methods:…

  2. Social Inclusion and People with Intellectual Disability and Challenging Behaviour: A Systematic Review

    Science.gov (United States)

    Bigby, Christine

    2012-01-01

    Background: Social inclusion is central to disability policies internationally. The high risk of social exclusion for people with intellectual disability is compounded for those with challenging behaviour. Method: A systematic literature review examined how social inclusion of people with intellectual disability and challenging behaviour has been…

  3. Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability

    Science.gov (United States)

    Rice, Catherine E.; Zablotsky, Benjamin; Avila, Rosa M.; Colpe, Lisa J.; Schieve, Laura A.; Pringle, Beverly; Blumberg, Stephen J.

    2016-01-01

    Objective To characterize wandering, or elopement, among children with autism spectrum disorder (ASD) and intellectual disability. Study design Questions on wandering in the previous year were asked of parents of children with ASD with and without intellectual disability and children with intellectual disability without ASD as part of the 2011 Survey of Pathways to Diagnosis and Services. The Pathways study sample was drawn from the much larger National Survey of Children with Special Health Care Needs conducted in 2009-2010. Results For children with special healthcare needs diagnosed with either ASD, intellectual disability, or both, wandering or becoming lost during the previous year was reported for more than 1 in 4 children. Wandering was highest among children with ASD with intellectual disability (37.7%) followed by children with ASD without intellectual disability (32.7%), and then children with intellectual disability without ASD (23.7%), though the differences between these groups were not statistically significant. Conclusions This study affirms that wandering among children with ASD, regardless of intellectual disability status, is relatively common. However, wandering or becoming lost in the past year was also reported for many children with intellectual disability, indicating the need to broaden our understanding of this safety issue to other developmental disabilities. PMID:27157446

  4. A systematic review of interventions aiming to improve involvement in physical activity among adults with intellectual disability.

    Science.gov (United States)

    Brooker, Katie; van Dooren, Kate; McPherson, Lyn; Lennox, Nick; Ware, Robert

    2015-03-01

    Evidence suggests that most adults with intellectual disability do not participate in sufficient amounts of physical activity (PA). A systematic review of peer-reviewed studies that reported an intervention aiming to improve PA levels of adults with intellectual disability was conducted. Keywords related to intellectual disability and physical activity were used to search relevant databases. Studies were excluded if they did not measure PA as an outcome for adults with intellectual disability, were non-English, and were not peer-reviewed. All relevant studies were included in the review regardless of methodological quality and design. Six articles met the inclusion criteria. These included health education or health promotion programs with PA, nutrition, and weight loss components. The quality of studies included in this review was generally poor. Most studies used a prepost design, sample sizes were small, and measurement tools were used that are not valid and reliable for the population assessed. PA interventions have the potential to improve the health and wellbeing of people with intellectual disability, a vulnerable group who require attention from public health practitioners and researchers. Given the health inequities that exist, public health researchers should target efforts to improve PA levels among this group.

  5. Family-Peer Linkages for Children with Intellectual Disability and Children with Learning Disabilities.

    Science.gov (United States)

    Floyd, Frank J; Olsen, Darren L

    2017-09-01

    Family interactions are potential contexts for children with intellectual and learning disabilities to develop skillful social behaviors needed to relate effectively with peers. This study examined problem solving interactions within families of elementary school-age children (7-11 years) with intellectual disability (n = 37), specific learning disabilities (n =48), and without disabilities (n = 22). After accounting for group differences in children's behaviors and peer acceptance, across all groups, mothers' behaviors that encouraged egalitarian problem solving predicted more engaged and skillful problem solving by the children. However, mothers' controlling, directive behaviors predicted fewer of these behaviors by the children. Fathers' behaviors had mixed associations with the children's actions, possibly because they were reactive to children's unengaged and negative behaviors. For the children, greater involvement, more facilitative behaviors, and less negativity with their families were associated with greater acceptance from their peers, supporting family-peer linkages for children at risk for peer rejection.

  6. Teaching menstrual care skills to intellectually disabled female students.

    Science.gov (United States)

    Altundağ, Sebahat; Çalbayram, Nazan Çakırer

    2016-07-01

    The aim of this study was to teach pad replacement skills to intellectually disabled adolescent female students during their menstruation periods by demonstrating on a dummy. It may be difficult to make intellectually disabled adolescents achieve self-care during menstruation. In addition, there are difficulties experienced in explaining menstruation, such as physical changes and the practice of cleaning during this period. The study used a 'One group pretest and post-test model'. The study was performed in a special educational institution. The population consisted of 77 female students in the high school section. Calculation of a sample size was not attempted, and 54 students with no attendance issues agreed to take part in the study and were included. In this work, we found that pad replacement training significantly changed the scores of mentally disabled adolescents before and after training. Our training yielded positive results, and the population improved their skills at all stages of skill building. Training adolescents with mental disabilities helped them gain hygiene habits. Performance of these trainings occurs at the beginning of menstrual hygiene education. To achieve improved success in life, it is important that adolescents assume the responsibility of self-care and manage sustained care activity on their own. © 2016 John Wiley & Sons Ltd.

  7. Health promotion in families who have children with intellectual and developmental disabilities

    Directory of Open Access Journals (Sweden)

    Emira Švraka

    2011-04-01

    Full Text Available Intellectual disability is the state of stopped or incomplete mental development which is featured by the impairment of abilities occurring at the development age and contributes to general level of intelligence, such as speech, cognitive, motor and social abilities. Disability can occur together or separately from other mental or physical disorders. 290 million people worldwide are estimated to have disabilities. Health is a core element in quality of life, but poverty, marginalization, limited access to primary health care, and lack of health promotion knowledge compromise health. Based on a research results in all nine areas of the family life quality (health, nancial status, family relations, support of other, support of services, influence of values, career, leisure and recreation, and community interaction community could influence with the permanent preventive measures on 6 concepts of family life quality: importance, possibility, initiative, achievement, stability and satisfaction. The research could be of great help for the development of comprehensive strategies for improvement of quality of life for families that have one or more members with intellectual disability. From inclusion we expect approach to individual and his/her family by the society, to take into account all their diversities, preservation and improvement of their personal physical and mental health, for optimal possible functioning, at all personal and social levels.

  8. A study of behaviour problems and psychiatric disorders among people with intellectual disability

    OpenAIRE

    Myrbakk, Even

    2008-01-01

    The present thesis investigates behaviour problems and their relationship to psychiatric disorders in people with intellectual disability living in the northern part of Norway, as well as the concordances between four of the most commonly used assessment instruments for psychiatric disorders in people with intellectual disability. A total of one hundred and eighty-one individuals with intellectual disability living in the counties of Nordland, Troms and Finnmark participated in the studies. ...

  9. Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique.

    Science.gov (United States)

    Tuffrey-Wijne, I; Wicki, M; Heslop, P; McCarron, M; Todd, S; Oliver, D; de Veer, A; Ahlström, G; Schäper, S; Hynes, G; O'Farrell, J; Adler, J; Riese, F; Curfs, L

    2016-03-24

    Empirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe. A two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance. A total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities. The proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be

  10. Children With Intellectual Disability and Hospice Utilization: The Moderating Effect of Residential Care.

    Science.gov (United States)

    Lindley, Lisa C

    2017-01-01

    Children with intellectual disability commonly lack access to pediatric hospice care services. Residential care may be a critical component in providing access to hospice care for children with intellectual disability. This research tested whether residential care intensifies the relationship between intellectual disability and hospice utilization (ie, hospice enrollment, hospice length of stay), while controlling for demographic characteristics. Multivariate regression analyses were conducted using 2008 to 2010 California Medicaid claims data. The odds of children with intellectual disability in residential care enrolling in hospice care were 3 times higher than their counterparts in their last year of life, when controlling for demographics. Residential care promoted hospice enrollment among children with intellectual disability. The interaction between intellectual disability and residential care was not related to hospice length of stay. Residential care did not attenuate or intensify the relationship between intellectual disability and hospice length of stay. The findings highlight the important role of residential care in facilitating hospice enrollment for children with intellectual disability. More research is needed to understand the capability of residential care staff to identify children with intellectual disability earlier in their end-of-life trajectory and initiate longer hospice length of stays.

  11. Do individuals with intellectual disability have a lower peak heart rate and maximal oxygen uptake?

    Science.gov (United States)

    Hilgenkamp, Thessa Irena Maria; Baynard, Tracy

    2017-12-12

    Individuals with intellectual disability (ID) have very low physical activity and low peak oxygen uptake (VO 2peak ), potentially explained by physiologically lower peak heart rates (HR peak ). The present authors performed a retrospective analysis of a large data set of individuals with intellectual disability (n = 100), with Down syndrome (DS) (n = 48) and without intellectual disability (n = 224) using multiple linear regression analyses, to determine if individuals with intellectual disability exhibit lower HR peak and VO 2peak than individuals without intellectual disability, controlling for age, sex and body mass index (BMI). Individuals with intellectual disability on average have significantly lower HR peak and VO 2peak than individuals without intellectual disability, even when controlling VO 2peak for the lower HR peak . This study suggests potential physiological differences in individuals with intellectual disability and warrants further investigation to determine their relevance to physical activity promotion and exercise testing in individuals with intellectual disability. © 2017 John Wiley & Sons Ltd.

  12. Intellectual disability and patient activation after release from prison: a prospective cohort study.

    Science.gov (United States)

    Young, J T; Cumming, C; van Dooren, K; Lennox, N G; Alati, R; Spittal, M J; Brophy, L; Preen, D B; Kinner, S A

    2017-10-01

    Intellectual disability and patient activation may be important drivers of inequities in health service access and health outcomes for people with intellectual disability transitioning from prison to the community. We assessed the association between intellectual disability and patient activation after prison release and examined whether this association varied, depending on whether intellectual disability was identified prior to prison release. Overall, 936 prisoners were screened for intellectual disability by using the Hayes Ability Screening Index and completed the Patient Activation Measure (PAM) within 6 weeks of prison release and again at 1, 3 and 6 months post-release. We estimated the association between intellectual disability status and PAM scores by using a multilevel linear model, adjusting for sociodemographic, behavioural, health and criminogenic factors. We used propensity score matching to estimate the impact of being identified with intellectual disability prior to release from prison on the change in mean PAM score after prison release. Compared with those who screened negative for intellectual disability, ex-prisoners who screened positive, both with and without prior identification of intellectual disability, had significantly decreased mean PAM scores [(B = -4.3; 95% CI: -6.3, -2.4) and (B = -4.5; 95% CI: -6.8, -2.3), respectively] over 6 months of follow-up. Among those who reported being identified with intellectual disability prior to release from prison, a significant increase in PAM score at the 6-month follow-up interview (B = 5.89; 95% CI: 2.35, 9.42; P = 0.001) was attributable to being identified with intellectual disability prior to release. Ex-prisoners screening positive for possible intellectual disability have decreased patient activation for at least 6 months after release from prison. However, individuals whose possible intellectual disability is unidentified appear to be particularly vulnerable. Incarceration is a

  13. 76 FR 68486 - President's Committee for People With Intellectual Disabilities: Committee Meeting via Conference...

    Science.gov (United States)

    2011-11-04

    ...) should notify Genevieve Swift, PCPID Executive Administrative Assistant, at Edith.Swift@acf.hhs.gov , or... Taylor Roach, Senior Advisor, President's Committee for People with Intellectual Disabilities, The...

  14. Are we ignoring the problem of sleep disorder in children with intellectual disabilities?

    LENUS (Irish Health Repository)

    MacCrosain, A M

    2009-12-01

    Sleep problems are more common amongst children with intellectual disability than other children. The implications for families, teachers and classmates, as well as the children themselves, are profound.

  15. Psychiatric morbidity in prisoners with intellectual disabilities: analysis of prison survey data for England and Wales.

    Science.gov (United States)

    Hassiotis, Angela; Gazizova, Dina; Akinlonu, Leah; Bebbington, Paul; Meltzer, Howard; Strydom, Andre

    2011-08-01

    A substantial number of prisoners have intellectual disabilities. We analysed data on a sample drawn from all prisons in England and Wales. Intellectual disability was defined as Quick Test scores equivalent to an IQ of ≤65. We found a significantly higher prevalence of probable psychosis, attempted suicide and cannabis use in prisoners with intellectual disabilities. Presence of intellectual disability was twice as likely to be associated with probable psychosis but the relationship was fully mediated by self-rated health status. It is important to identify this group as early as possible in order to provide timely interventions to cope in adverse environments and manage substance misuse.

  16. The practical implication of comparing how adults with and without intellectual disability respond to music

    DEFF Research Database (Denmark)

    Hooper, Jeff; Wigram, Tony; Carson, Derek

    2011-01-01

    Previous researchers who compared how people with, and without, an intellectual disability respond to music focused on musical aptitude, but not on arousal. This paper presents the background, methodology, and results of a study that selected fifteen different pieces of music, and compared...... the arousal response of adults with (n = 48), and without (n = 48), an intellectual disability. There was a very strong significant positive correlation (rho = 0.831, N = 15, P ... an intellectual disability, can be used appropriately in an intervention predicated for lowering the arousal levels of the intellectually disabled population....

  17. Severe Intellectual Disability: Systematic Review of the Prevalence and Nature of Presentation of Unipolar Depression.

    Science.gov (United States)

    Walton, Catherine; Kerr, Mike

    2016-09-01

    The diagnosis of depression in severe and profound intellectual disability is challenging. Without adequate skills in verbal self-expression, standardized diagnostic criteria cannot be used with confidence. The purpose of this systematic review was to investigate the assessment and diagnosis of unipolar depression in severe and profound intellectual disability. The review aimed to examine the methods used to assess for depression. The secondary aim was to explore the frequency and symptoms of depression. The PRISMA (2009) Checklist for systematic review was followed, and a search of electronic databases was undertaken. Nine studies were included in the qualitative synthesis from over 2000 records identified. The quality of the studies was assessed and scored, with a wide range of results. Individual studies scored between 2 and 7 of a maximum possible score of 8. The diagnostic tools utilized by each of the studies were assessed and compared. In terms of the methods used to assess for depression, results were varied. This was due to the heterogeneous nature of the individual study designs. The Aberrant Behaviour Checklist consistently showed promise, in particular when combined with other instruments or clinical examination. Qualitative analysis of the selected studies has shown a wide variation in the quality of primary research in this field, with more required to make firm conclusions regarding the diagnosis, frequency and presentation of depression in severe and profound intellectual disability. © 2015 John Wiley & Sons Ltd.

  18. Problem solving verbal strategies in children with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Gligorović Milica

    2013-01-01

    Full Text Available Problem solving is a process conditioned by the development and application of efficient strategies. The aim of this research is to determine the level of verbal strategic approach to problem solving in children with mild intellectual disability (MID. The sample consists of 93 children with MID, aged between 10 and 14. Intellectual abilities of the examinees are within the defined range for mild intellectual disability (AM=60.45; SD=7.26. The examinees with evident physical, neurological, and emotional disorders were not included in the sample. The closed 20 Questions Test (20Q was used to assess the development and use of verbal strategy, where the examinee is presented with a poster containing 42 different pictures, and instructed to guess the picture selected by the examiner by asking no more than 20 closed questions. Test χ2, and Spearman and Pearson's correlation coefficient were used in statistical analysis. Research results indicate that most children with MID, aged between 10 and 14, use non-efficient strategy in solving the 20 Questions Test. Although strategic approach to problem solving is present in most children (72%, more than half of the examinees (53.5% use an inadequate strategy. Most children with MID have the ability to categorize concepts, however, they do not use it as a strategy in problem solving.

  19. Non-verbal communication between Registered Nurses Intellectual Disability and people with an intellectual disability: an exploratory study of the nurse's experiences. Part 1.

    Science.gov (United States)

    Martin, Anne-Marie; Connor-Fenelon, Maureen O'; Lyons, Rosemary

    2012-03-01

    This is the first of two articles presenting the findings of a qualitative study which explored the experiences of Registered Nurses Intellectual Disability (RNIDs) of communicating with people with an intellectual disability who communicate non-verbally. The article reports and critically discusses the findings in the context of the policy and service delivery discourses of person-centredness, inclusion, choice and independence. Arguably, RNIDs are the profession who most frequently encounter people with an intellectual disability and communication impairment. The results suggest that the communication studied is both complicated and multifaceted. An overarching category of 'familiarity/knowing the person' encompasses discrete but related themes and subthemes that explain the process: the RNID knowing the service-user; the RNID/service-user relationship; and the value of experience. People with an intellectual disability, their families and disability services are facing a time of great change, and RNIDs will have a crucial role in supporting this transition.

  20. Individuals with mild intellectual disability or borderline intellectual functioning in a forensic addiction treatment centre: Prevalence and clinical characteristics

    NARCIS (Netherlands)

    Luteijn, I.; Didden, H.C.M.; Nagel, J.E.L. van der

    2017-01-01

    Knowledge regarding substance-related problems and offending behavior in individuals with mild intellectual disability or borderline intellectual functioning (MBID; IQ 50-85) has increased over the last years, but is still limited. The present study examined differences in prevalence and clinical

  1. Meeting the support needs of persons with mild intellectual disability or borderline intellectual functioning : Still a long way to go

    NARCIS (Netherlands)

    Nouwens, P J G; Smulders, N B M; Embregts, P J C M; van Nieuwenhuizen, C

    2017-01-01

    Background: Among persons with a mild intellectual disability or borderline intellectual functioning, differences in their characteristics imply that a differentiated approach is required to meet their needs. This retrospective study examined whether the history of support/treatment programs and the

  2. Factors Affecting Placement of a Child with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Isack Kandel

    2005-01-01

    Full Text Available Parents of disabled children often face the question whether or not to keep the child at home or to place them. The choice between the two alternatives resides with the parents and various factors influence their decision. Several researchers have identified these factors, which include child-related parameters, family and parental attitudes, the influence of the social environment, and the external assistance provided to the family. In a pilot study, we attempted to isolate the main factors involved in the parental decision either to keep the child at home or place the child by examining a sample comprised of 50 parents of children suffering severe intellectual disability studying in a special education school and 48 parents of adults with intellectual disability working in sheltered workshops. Each parent filled out a questionnaire used in a study in the United States and results of the research indicated parental-related factors as the dominant factors that delayed the placement of their child in residential care; guilt feelings were the main factor.

  3. A study about siblings in the face of intellectual disability

    Directory of Open Access Journals (Sweden)

    Olga Lizasoain

    2010-05-01

    Full Text Available Research has shown that siblings of a person with intellectual disabilities can present problems of identification and socialization, the need for compensation, early adoption of large responsibilities, feelings of abandonment, guilt, shame or sadness. Nevertheless, if the needs of these brothers and sisters are facing, disability can become a source of personal and family enrichment. This article presents the initial conclusions drawn after a series of personal interviews conducted with siblings of students in a special education school. Awareness of the issue leads us to approach this study with the aim of providing guidelines of intervention to help siblings to minimize the potential negative impact of having a brother or sister with intellectual disabilities, and facilitate the development of attitudes and behaviours that enable them to face stressful situations in a constructive manner. Thanks to the direct experience of those who have been confronted with this situation, is issued to prevent psychosocial problems associated with having a brother or sister with these features.

  4. 77 FR 43335 - Administration on Intellectual and Developmental Disabilities; Agency Information Collection...

    Science.gov (United States)

    2012-07-24

    ... Intellectual and Developmental Disabilities; Agency Information Collection Activities; Proposed Collection; Comment Request; Financial Status Reporting Form for State Councils on Developmental Disabilities AGENCY... hours per Total burden respondents respondent response hours Financial Status Reporting Form for State...

  5. MEANS OF ORIENTEERING IN EDUCATION OF JUNIOR SCHOOLCHILDREN WITH INTELLECTUAL DISABILITY

    Directory of Open Access Journals (Sweden)

    Irina V. Mayorkina

    2015-01-01

    Full Text Available The purpose of this study is to examine the impact of the adapted methods of basic training in orienteering (BTIO on the correction of physical fitness and mental development of junior schoolchildren with intellectual disability (ID.Methods. The following methods were used: theoretical analysis of literature, generalization, «forming» experiment, mathematical statistics, testing of physical qualities, psychological testing and pedagogical observation.Results and scientific novelty. The conditions of basic training in orienteering for junior schoolchildren with intellectual disability are determined wherein the correction of physical fitness and mental functions through the means of orienteering will be the most effective. Methods of basic training were substantiated and adapted for the capabilities of junior schoolchildren with ID. The author has defined the effect of orienteering exercises on the development of speed-andstrength qualities, overall endurance, movement speed, coordination; fine motor skills; stability, volume and switching of attention, volume of picturesque and verbal memory, representational thought and verbal-logical thinking; volitional qualities.The study has revealed wholesome influence of orienteering on correction of physical fitness and mental functions of schoolchildren of 9–10 years with intellectual disability.Practical significance. The results could be used for education of junior schoolchildren with ID during extra classes in special (correctional schools of Type-7 and during remedial classes (remedial and developing teaching in schools of general education. The results could also be applied for training of teachers of additional education. The adapted methods of BTIO for junior schoolchildren with ID could be used for normally developing children of younger age. Practical recommendations on the organization and conditions of orienteering exercises for junior schoolchildren with ID, games and intellectual

  6. Ageing in individuals with intellectual disability: issues and concerns in Hong Kong.

    Science.gov (United States)

    Tse, M My; Kwan, R Yc; Lau, J L

    2018-02-01

    The increasing longevity of people with intellectual disability is testimony to the positive developments occurring in medical intervention. Nonetheless, early-onset age-related issues and concerns cause deterioration of their overall wellbeing. This paper aimed to explore the issues and concerns about individuals with intellectual disability as they age. Articles that discussed people older than 30 years with an intellectual disability and those that identified ageing health issues and concerns were included. Only studies reported in English from 1996 to 2016 were included. We searched PubMed, Google Scholar, and Science Direct using the terms 'intellectual disability', 'ageing', 'cognitive impairment', 'health', and 'screening'. Apart from the early onset of age-related health problems, dementia is more likely to develop by the age of 40 years in individuals with intellectual disability. Geriatric services to people with intellectual disability, however, are only available for those aged 60 years and older. Cognitive instruments used for the general population are not suitable for people with intellectual disability because of floor effects. In Hong Kong, the Chinese version of the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities is the only validated instrument for people with intellectual disability. The use of appropriate measurement tools to monitor the progression of age-related conditions in individuals with intellectual disability is of great value. Longitudinal assessment of cognition and function in people with intellectual disability is vital to enable early detection of significant deterioration. This allows for therapeutic intervention before substantial damage to the brain occurs such as dementia that hastens cognitive and functional decline.

  7. Monitoring the prevalence of severe intellectual disability in children across Europe

    DEFF Research Database (Denmark)

    van Bakel, Marit; Einarsson, Ingolfur; Arnaud, Catherine

    2014-01-01

    Our aim was to study the feasibility of creating a framework for monitoring and undertaking collaborative research on intellectual disability at the European level, based on existing databases of children with such disability.......Our aim was to study the feasibility of creating a framework for monitoring and undertaking collaborative research on intellectual disability at the European level, based on existing databases of children with such disability....

  8. Measuring physical activity with accelerometers for individuals with intellectual disability: A systematic review.

    Science.gov (United States)

    Leung, Willie; Siebert, Erin A; Yun, Joonkoo

    2017-08-01

    Multiple studies have reported differing physical activity levels for individuals with intellectual disabilities when using accelerometers. One of the potential reasons for these differences may be due to how researchers measure physical activity. Currently there is a lack of understanding on measurement protocol of accelerometers. The purpose of this study was to synthesize the current practice of using accelerometers to measure physical activity levels among individuals with intellectual disabilities. A systematic search was conducted using multiple databases including Medline (1998-2015), Sport Discus (1992-2015), Web of Science (1965-2015), and Academic Research Premier (2004-2015). Seventeen articles were found that met the inclusion criteria. There is a lack of consistent research protocols for measuring physical activity levels with accelerometers. Issues with the amount of time participants wore the accelerometer was a challenge for multiple studies. Studies that employed external strategies to maximize wear time had higher compliance rates. There is a need to establish and standardize specific accelerometer protocols for measuring physical activity levels of individuals with intellectual disabilities for higher quality and more comparable data. Copyright © 2017 Elsevier Ltd. All rights reserved.

  9. People with Intellectual Disabilities Talk About Sexuality: Implications for the Development of Sex Education.

    Science.gov (United States)

    Schaafsma, D; Kok, G; Stoffelen, J M T; Curfs, L M G

    2017-01-01

    Existing sex education programmes have failed in involving people with intellectual disabilities in the development of these programmes. Not involving the target population decreases the likelihood that the sex education programme will be effective. This study was conducted to assess the perspectives of people with intellectual disabilities on several sexuality-related topics. Semi-structured interviews were held with 20 people with intellectual disabilities covering topics such as: sex education, relationships, sex, social media, parenthood and support. The reported frequency of sex education the participants receive is low. Their knowledge regarding sex education is mainly limited to topics such as safe sex, contraception and STI's and tends to be superficial. Additionally, knowledge on safe sex does not always translate to safe sex behaviour. Finally, relationships are important for most participants; mainly because they don't want to be alone. Findings from both this study and literature shows that there seems to be a need for high quality sex education. Topics to consider to include are: online relationships, social media and parenthood. It would also be beneficial to focus on sexuality-related skills. Finally, to increase the effectiveness of a sex education programme, it is advisable that a theory-and evidence-based framework, such as Intervention Mapping, is used for its development.

  10. The implications of having attention-deficit/hyperactivity disorder in male adolescents with intellectual disability.

    Science.gov (United States)

    Carmeli, Eli; Klein, Neomy; Sohn, Mordechai

    2007-01-01

    Attention-deficit/hyperactivity disorder (ADHD) is currently defined as a cognitive/behavioral developmental disorder where all clinical criteria are behavioral. The purpose of this study was to demonstrate a correlation between social skills and ADHD among adolescents with intellectual disabilities (ID). The study concerns the specific cognitive and adaptive skills of adolescents dually diagnosed with mild intellectual disabilities and comorbid pathology as ADHD. Three age-and IQ-match groups (males, n = 12 in each group) were investigated. Group I--composed of adolescent diagnosed with mild ID, group II--adolescents diagnosed with ADHD, and group III--adolescents diagnosed with ID and ADHD. The instruments used in the study were Wechsler Intelligence Scale for Children (WISC, according to the chronological age of the subjects) and the short version of the Developmental Behavior Checklist (DBC). Results confirm that comorbidity is a factor differentiating. ADHD strongly increased the impairment of social skills, while behavioral disorders were less damaging in ID performance. The WISC and DBC instruments should be used with confidence in clinical and service settings, to allow a better assessment of co-occurrence morbidity in adolescents with ID. The interactions between intellectual disability and psychopathology behavior highlight the need to plan a more accurate diagnosis and appropriate rehabilitative intervention program, essential for improving the quality of life of the ID population.

  11. Ask: a health advocacy program for adolescents with an intellectual disability: a cluster randomised controlled trial

    Directory of Open Access Journals (Sweden)

    Lennox Nicholas

    2012-09-01

    Full Text Available Abstract Background Adolescents with intellectual disability often have poor health and healthcare. This is partly as a consequence of poor communication and recall difficulties, and the possible loss of specialised paediatric services. Methods/Design A cluster randomised trial was conducted with adolescents with intellectual disability to investigate a health intervention package to enhance interactions among adolescents with intellectual disability, their parents/carers, and general practitioners (GPs. The trial took place in Queensland, Australia, between February 2007 and September 2010. The intervention package was designed to improve communication with health professionals and families’ organisation of health information, and to increase clinical activities beneficial to improved health outcomes. It consisted of the Comprehensive Health Assessment Program (CHAP, a one-off health check, and the Ask Health Diary, designed for on-going use. Participants were drawn from Special Education Schools and Special Education Units. The education component of the intervention was delivered as part of the school curriculum. Educators were surveyed at baseline and followed-up four months later. Carers were surveyed at baseline and after 26 months. Evidence of health promotion, disease prevention and case-finding activities were extracted from GPs clinical records. Qualitative interviews of educators occurred after completion of the educational component of the intervention and with adolescents and carers after the CHAP. Discussion Adolescents with intellectual disability have difficulty obtaining many health services and often find it difficult to become empowered to improve and protect their health. The health intervention package proposed may aid them by augmenting communication, improving documentation of health encounters, and improving access to, and quality of, GP care. Recruitment strategies to consider for future studies in this population

  12. End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives.

    Science.gov (United States)

    Wagemans, Annemieke M A; Van Schrojenstein Lantman-de Valk, Henny M J; Proot, Ireen M; Metsemakers, Job; Tuffrey-Wijne, Irene; Curfs, Leopold M G

    2013-09-01

    Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. A qualitative study based on semi-structured interviews, recorded digitally and transcribed verbatim. Data were analysed using Grounded Theory procedures. We interviewed 16 patient representatives after the deaths of 10 people with intellectual disabilities in the Netherlands. The core category 'Deciding for someone else' describes the context in which patient representatives took end-of-life decisions. The patient representatives felt highly responsible for the outcomes. They had not involved the patients in the end-of-life decision-making process, nor any professionals other than the doctor. The categories of 'Motives' and 'Support' were connected to the core category of 'Deciding for someone else'. 'Motives' refers to the patient representatives' ideas about quality of life, prevention from suffering, patients who cannot understand the burden of interventions and emotional reasons reported by patient representatives. 'Support' refers to the support that patient representatives wanted the doctors to give to them in the decision-making process. From the perspective of the patient representatives, the process of end-of-life decision-making can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Regular discussion between everyone involved including people with intellectual disabilities themselves can improve knowledge about each other's motives for end-of-decisions and can clarify expectations towards each other.

  13. Ask: a health advocacy program for adolescents with an intellectual disability: a cluster randomised controlled trial

    Science.gov (United States)

    2012-01-01

    Background Adolescents with intellectual disability often have poor health and healthcare. This is partly as a consequence of poor communication and recall difficulties, and the possible loss of specialised paediatric services. Methods/Design A cluster randomised trial was conducted with adolescents with intellectual disability to investigate a health intervention package to enhance interactions among adolescents with intellectual disability, their parents/carers, and general practitioners (GPs). The trial took place in Queensland, Australia, between February 2007 and September 2010. The intervention package was designed to improve communication with health professionals and families’ organisation of health information, and to increase clinical activities beneficial to improved health outcomes. It consisted of the Comprehensive Health Assessment Program (CHAP), a one-off health check, and the Ask Health Diary, designed for on-going use. Participants were drawn from Special Education Schools and Special Education Units. The education component of the intervention was delivered as part of the school curriculum. Educators were surveyed at baseline and followed-up four months later. Carers were surveyed at baseline and after 26 months. Evidence of health promotion, disease prevention and case-finding activities were extracted from GPs clinical records. Qualitative interviews of educators occurred after completion of the educational component of the intervention and with adolescents and carers after the CHAP. Discussion Adolescents with intellectual disability have difficulty obtaining many health services and often find it difficult to become empowered to improve and protect their health. The health intervention package proposed may aid them by augmenting communication, improving documentation of health encounters, and improving access to, and quality of, GP care. Recruitment strategies to consider for future studies in this population include ensuring potential

  14. The Intersection of Intellectual Disability and Dementia: Report of The International Summit on Intellectual Disability and Dementia.

    Science.gov (United States)

    Watchman, Karen; Janicki, Matthew P

    2017-11-02

    An International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland (October 13-14, 2016), drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (a) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with ID), (b) individualized services and clinical supports (advancing and advanced dementia, post-diagnostic supports, community supports and services, dementia-capable care practice, and end-of-life care practices), and (c) advocacy, public impact, family caregiver issues (nomenclature/terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into a series of publications and topical summary bulletins designed to be international resources, practice guidelines, and the impetus for planning and advocacy with, and on behalf of, people with ID affected by dementia, as well as their families. The general themes of the conceptual areas are discussed and the main recommendations are associated with three primary concerns. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  15. Assessing client-caregiver relationships and the applicability of the 'student-teacher relationship scale' for people with intellectual disabilities

    NARCIS (Netherlands)

    Roeden, J.M.; Maaskant, M.A.; Koomen, H.M.Y.; Candel, M.J.J.M.; Curfs, L.M.G.

    2012-01-01

    Improvements in client-caregiver relationships may lead to improvements in the quality of life of clients with intellectual disabilities (ID). For this reason, interventions aimed at influencing these relationships are important. To gain insight into the nature and intention of these relationships

  16. The Use of Assistive Technology to Improve Time Management Skills of a Young Adult with an Intellectual Disability

    Science.gov (United States)

    Green, Julie M.; Hughes, Elizabeth M.; Ryan, Joseph B.

    2011-01-01

    A growing literature base suggests the need for positive interventions to help individuals with intellectual disabilities improve their time management skills. Time management is a crucial area that must be addressed in the effort to equip adults with the skills necessary to achieve independence, success in employment, and improved quality of…

  17. A Pilot Investigation into the Efficacy of a Signing Training Strategy for Staff Working with Adults with Intellectual Disabilities

    Science.gov (United States)

    Chadwick, Darren D.; Jolliffe, Jane

    2009-01-01

    To contribute to increasing the quality and quantity of communication between staff and adults with intellectual disabilities, training was undertaken to enhance the awareness and knowledge of signing as a method of communication. Multidisciplinary team members, residential and day centre staff were trained to use 20 core signs. Training methods…

  18. Utility of Staff Training on Correcting Sleep Problems in People With Intellectual Disabilities Living in Residential Settings

    NARCIS (Netherlands)

    Hylkema, T.; Petitiaux, W.; Vlaskamp, C.

    While sleep problems in people with intellectual disabilities (ID) living in residential settings are very common, scant attention is paid to them. This study examined how to improve the knowledge and understanding of sleep quality and sleep problems in people with ID among care staff at a

  19. Developing a questionnaire on physical activity support of people with (profound) intellectual (and multiple) disabilities : Experiences from the Netherlands

    NARCIS (Netherlands)

    Bossink, Leontien; van der Putten, Annette; Vlaskamp, Carla

    2017-01-01

    Introduction: People with intellectual disabilities (ID) undertake extremely low levels of physical activity, which is even more true in people with profound intellectual and multiple disabilities (PIMD). Physical activity approaches, particularly for people with PIMD, are more likely to be

  20. Perspectives of Employees with Intellectual Disabilities on Themes Relevant to Their Job Satisfaction. An Explorative Study using Photovoice

    NARCIS (Netherlands)

    Akkerman, A.; Janssen, C.G.C.; Kef, S.; Meininger, H.P.

    2014-01-01

    Background: This study explored the perspectives of people with intellectual disabilities on themes relevant to their job satisfaction in integrated and sheltered employment. Method: The photovoice method was used. Nine participants with moderate to mild intellectual disabilities, working in

  1. The Development of Research Skills in Young Adults with Intellectual Disability in Participatory Research

    Science.gov (United States)

    Morgan, Michelle F.; Moni, Karen B.; Cuskelly, Monica

    2015-01-01

    There is limited information about specific research constructs developed by adults with intellectual disability in undertaking research despite increasing involvement in research "with" rather than "on" these individuals. Participatory research was used with three young adults with intellectual disability to collaboratively…

  2. Enabling Access and Enhancing Comprehension of Video Content for Postsecondary Students with Intellectual Disability

    Science.gov (United States)

    Evmenova, Anya S.; Behrmann, Michael M.

    2014-01-01

    There is a great need for new innovative tools to integrate individuals with intellectual disability into educational experiences. This multiple baseline study examined the effects of various adaptations for improving factual and inferential comprehension of non-fiction videos by six postsecondary students with intellectual disability. Video…

  3. Thematic Analysis of the Effectiveness of an Inpatient Mindfulness Group for Adults with Intellectual Disabilities

    Science.gov (United States)

    Yildiran, Hatice; Holt, Rachel R.

    2015-01-01

    The study focused on the effectiveness of group mindfulness for people with intellectual disabilities in an assessment and treatment unit. Six participants with mild or moderate intellectual disabilities were interviewed using semi-structured interviews. The interviews focused on identifying the benefits and difficulties of using mindfulness. The…

  4. Examining Rater Effects of the TGMD-2 on Children with Intellectual Disability

    Science.gov (United States)

    Kim, Youngdeok; Park, Ilhyeok; Kang, Minsoo

    2012-01-01

    The purpose of this study was to investigate rater effects on the TGMD-2 when it applied to children with intellectual disability. A total of 22 children with intellectual disabilities participated in this study. Children's performances in each of 12 subtests of the TGMD-2 were recorded via video and scored by three adapted physical activity…

  5. Carer Knowledge and Perceptions of Healthy Lifestyles for Adults with Intellectual Disabilities

    Science.gov (United States)

    Melville, Craig A.; Hamilton, Sarah; Miller, Susan; Boyle, Susan; Robinson, Nicola; Pert, Carol; Hankey, Catherine R.

    2009-01-01

    Background: Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers' training needs on diet and physical activity. Methods: A cross-sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities.…

  6. Self Stigma in People with Intellectual Disabilities and Courtesy Stigma in Family Carers: A Systematic Review

    Science.gov (United States)

    Ali, Afia; Hassiotis, Angela; Strydom, Andre; King, Michael

    2012-01-01

    People with intellectual disability are one of the most stigmatised groups in society. Despite this, research in this area has been limited. This paper provides a review of studies examining self stigma in people with intellectual disability, and courtesy and affiliate stigma in family carers. An electronic search of studies published between 1990…

  7. Understanding Sources of Knowledge for Coaches of Athletes with Intellectual Disabilities

    Science.gov (United States)

    MacDonald, Dany J.; Beck, Katie; Erickson, Karl; Côté, Jean

    2016-01-01

    Background: Recent research has investigated development of coaching knowledge; however, less research has investigated the development of coaches who coach athletes with intellectual disabilities. The purpose of this study was to understand how coaches of athletes with intellectual disabilities gain their knowledge. Method: Forty-five Special…

  8. Mortality among a Cohort of Persons with an Intellectual Disability in New South Wales, Australia

    Science.gov (United States)

    Florio, Tony; Trollor, Julian

    2015-01-01

    Objectives: The main objective of the study was to compare mortality for people with an intellectual disability (ID) to the general population in New South Wales (NSW), Australia. A second objective was to provide mortality data for people with an intellectual disability from NSW in a standardized format, which allows for international comparisons…

  9. End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives

    NARCIS (Netherlands)

    Wagemans, A.M.; Schrojenstein Lantman-de Valk, H.M. van; Proot, I.M.; Metsemakers, J.; Tuffrey-Wijne, I.; Curfs, L.M.G.

    2013-01-01

    Background: Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. Aim: To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. Design: A qualitative study

  10. Exogenous Melatonin for Sleep Problems in Individuals with Intellectual Disability: A Meta-Analysis

    Science.gov (United States)

    Braam, Wiebe; Smits, Marcel G.; Didden, Robert; Korzilius, Hubert; van Geijlswijk, Ingeborg M.; Curfs, Leopold M. G.

    2009-01-01

    Recent meta-analyses on melatonin has raised doubts as to whether melatonin is effective in treating sleep problems in people without intellectual disabilities. This is in contrast to results of several trials on melatonin in treating sleep problems in individuals with intellectual disabilities. To investigate the efficacy of melatonin in treating…

  11. Measuring Physical Activity with Pedometers in Older Adults with Intellectual Disability : Reactivity and Number of Days

    NARCIS (Netherlands)

    Hilgenkamp, Thessa; Van Wijck, Ruud; Evenhuis, Heleen

    The minimum number of days of pedometer monitoring needed to estimate valid average weekly step counts and reactivity was investigated for older adults with intellectual disability. Participants (N = 268) with borderline to severe intellectual disability ages 50 years and older were instructed to

  12. Early Detection of Dementia in People with an Intellectual Disability--A German Pilot Study

    Science.gov (United States)

    Kuske, Bettina; Wolff, Christian; Gövert, Uwe; Müller, Sandra Verena

    2017-01-01

    Background: This study investigated the application of a newly developed neuropsychological assessment, the Wolfenbütteler Dementia Test for Individuals with Intellectual Disabilities (WDTIM) in combination with the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID). Methods: The instruments were evaluated in…

  13. Barriers and Enablers to Accessing Mental Health Services for People with Intellectual Disability: A Scoping Review

    Science.gov (United States)

    Whittle, Erin Louise; Fisher, Karen R.; Reppermund, Simone; Lenroot, Rhoshel; Trollor, Julian

    2018-01-01

    Background: It is well established that people with an intellectual disability have high rates of mental health problems, yet rates of uptake of services do not match need. Aim: To identify the current literature pertaining to the barriers and facilitators to access to mental health services for people with an intellectual disability. Method: A…

  14. Augmented Reality for Teaching Science Vocabulary to Postsecondary Education Students with Intellectual Disabilities and Autism

    Science.gov (United States)

    McMahon, Don D.; Cihak, David F.; Wright, Rachel E.; Bell, Sherry Mee

    2016-01-01

    The purpose of this study was to examine the use of an emerging technology called augmented reality to teach science vocabulary words to college students with intellectual disability and autism spectrum disorders. One student with autism and three students with an intellectual disability participated in a multiple probe across behaviors (i.e.,…

  15. Physical Activity Benefits and Needs in Adults with Intellectual Disabilities: Systematic Review of the Literature

    Science.gov (United States)

    Bartlo, Pamela; Klein, Penelope J.

    2011-01-01

    Regular physical activity is vital for adult individuals with intellectual disabilities. The purpose of this review was to assess critically the evidence on effectiveness of physical activity interventions for adults with intellectual disability. An electronic database search was conducted. Research was then assessed for methodological rigor, and…

  16. Communication problems in children with autism and intellectual disability : depicting the phenotype

    NARCIS (Netherlands)

    Maljaars, Janne Pieternella Wilhelmina

    2012-01-01

    Children with autism and intellectual disability form a particularly vulnerable group, as both disorders have a significant impact on the way and level of information processing and communication. However, children with autism and co-occurring intellectual disability are often excluded from

  17. Concept Acquisition in Children with Mild Intellectual Disability: Factors Affecting the Abstraction of Prototypical Information.

    Science.gov (United States)

    Hayes, Brett K.; Conway, Robert N.

    2000-01-01

    A study investigated effects of variations in the number of instances comprising a category on concept acquisition by 31 children (ages 9-14) with mild intellectual disability and 19 controls. Intellectual disability had little effect on ability to abstract a category prototype but did reduce use of exemplar-specific information for recognition.…

  18. Attributional and Emotional Determinants of Aggression in People with Mild Intellectual Disabilities.

    Science.gov (United States)

    Baker, Warren; Bramston, Paul

    1997-01-01

    People (n=103) with mild intellectual disabilities responded to several scales of anger, hostility, aggression, and personality. Results were consistent with earlier studies of relationships among anger, hostility, and aggression conducted with the general population. Findings suggest that people with intellectual disabilities may benefit from…

  19. Child Welfare-Involved Youth with Intellectual Disabilities: Pathways into and Placements in Foster Care

    Science.gov (United States)

    Slayter, Elspeth; Springer, Cheryl

    2011-01-01

    Existing literature suggests that youth with intellectual disabilities are at increased risk for child maltreatment. Little is known about youth with intellectual disabilities who are supervised by child welfare authorities or living in foster care. Reasons for child welfare system involvement and placement types are explored. In this…

  20. Changes in Domain Specific Self-Perception amongst Young People with Intellectual Disability: A Longitudinal Study

    Science.gov (United States)

    O'Byrne, Clara; Muldoon, Orla T.

    2018-01-01

    This study examines the changes that occur in multidimensional self-concept of adolescents with a diagnosis of intellectual disabilities, across gender and category of intellectual disability (borderline, mild, moderate) groups. A sample of 54 young people completed the Harter Self-Perception Profile. Using a three-wave longitudinal study…

  1. Practitioners Who Work with Parents with Intellectual Disability: Stress, Coping and Training Needs

    Science.gov (United States)

    Clayton, Olivia; Chester, Andrea; Mildon, Robyn; Matthews, Jan

    2008-01-01

    Background: Challenges for practitioners who work with parents with intellectual disability arise from several sources. The purpose of the current study was to identify the stressors experienced by practitioners who work with parents with intellectual disability in Australia, investigate coping strategies and explore training needs so as to inform…

  2. Family Members' Reports of the Technology Use of Family Members with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Palmer, S. B.; Wehmeyer, M. L.; Davies, D. K.; Stock, S. E.

    2012-01-01

    Background: A nationwide survey of family members of people with intellectual and developmental disabilities ranging in age from birth through adulthood was conducted to replicate a similar effort by Wehmeyer and update the knowledge base concerning technology use by people with intellectual and developmental disabilities. Method: Survey responses…

  3. Prevalence of Falls and Risk Factors in Adults with Intellectual Disability

    Science.gov (United States)

    Hsieh, Kelly; Rimmer, James; Heller, Tamar

    2012-01-01

    The purpose of this study was to examine the prevalence of falls and risk factors for falls in 1,515 adults (greater than or equal to 18 years) with intellectual disability using baseline data from the Longitudinal Health and Intellectual Disability Study. Nearly 25% of adults from the study were reported to have had one or more falls in the past…

  4. Mainstream Students' Attitudes to Possible Inclusion in Unified Sports with Students Who Have an Intellectual Disability

    Science.gov (United States)

    Townsend, Michael; Hassall, John

    2007-01-01

    Background: Schools in New Zealand do not normally include students with intellectual disability in their sports programmes. This study examined regular students' attitudes towards the possible inclusion of students with an intellectual disability in an integrated sports programme within their school. Materials and Methods: A total of 170 school…

  5. Parental Explanatory Models of Child's Intellectual Disability: A Q Methodology Study

    Science.gov (United States)

    John, Aesha; Montgomery, Diane

    2016-01-01

    This study with families caring for an individual with an intellectual disability in a mid-sized Indian city explored the diverse explanatory models that parents constructed of causes, preferred treatment approaches and perceived social effects of their child's intellectual disability. Seventeen mothers and three fathers rank ordered 48 disability…

  6. Barriers to Increasing the Physical Activity of People with Intellectual Disabilities

    Science.gov (United States)

    Cartwright, Luke; Reid, Marie; Hammersley, Richard; Walley, Robert M.

    2017-01-01

    Background: The prevalence of obesity, inactivity and related morbidity and mortality is higher amongst people with intellectual disabilities than in the population in general, an issue of global concern. This research examined the perspectives of people with intellectual disabilities and their carers, on exercise and activity. Materials and…

  7. Social Interaction with Adults with Severe Intellectual Disability: Having Fun and Hanging Out

    Science.gov (United States)

    Johnson, Hilary; Douglas, Jacinta; Bigby, Christine; Iacono, Teresa

    2012-01-01

    Background: Social interaction is integral to social inclusion. Little is known about the nature of social interaction between adults with severe intellectual disability and those with whom they engage. Method: Participants were six adults with intellectual disability and people identified as those with whom they shared demonstrable pleasurable…

  8. Physical Activity Levels among Adolescent and Young Adult Women and Men with and without Intellectual Disability

    Science.gov (United States)

    Sundahl, Lina; Zetterberg, Marie; Wester, Anita; Rehn, Börje; Blomqvist, Sven

    2016-01-01

    Background: As physical activity can prevent overweight and promote general health, the aim was to investigate the amount of physical activity among adolescent and young adult women and men with intellectual disability (ID), compared to age-matched control groups without intellectual disability. A further aim was to examine whether physical…

  9. How Do People with Intellectual Disability Describe the Experience of Falling in Love?

    Science.gov (United States)

    Mattila, Jenni; Uusiautti, Satu; Määttä, Kaarina

    2017-01-01

    The phenomenon of falling in love among people with intellectual disability has not received much attention in research. In this study, seven Finnish young adults (5 women and 2 men) with mild intellectual disability (ID) were asked about their experiences of falling in love. They were interviewed with a qualitative themed interview method. The…

  10. Mortality of People with Intellectual Disabilities in England: A Comparison of Data from Existing Sources

    Science.gov (United States)

    Heslop, Pauline; Glover, Gyles

    2015-01-01

    Background: At present, there is limited statistical information about mortality of people with intellectual disabilities in England. This study explores the data that are currently available. Materials and Methods: Four recent sources of data about mortality of people with intellectual disabilities in England are reviewed: the Confidential…

  11. Making Work Fit Care: Reconciliation Strategies Used by Working Mothers of Adults with Intellectual Disabilities

    Science.gov (United States)

    Chou, Yueh-Ching; Fu, Li-yeh; Chang, Heng-Hao

    2013-01-01

    Background: This study explored the experiences of working mothers with an adult child with intellectual disabilities to understand how they reconcile paid work and care responsibilities. Methods: Fifteen working mothers in Taiwan with an adult child with intellectual disabilities were interviewed, and an interpretative phenomenological approach…

  12. Older and Younger Family Caregivers of Adults with Intellectual Disability: Factors Associated with Future Plans

    Science.gov (United States)

    Chou, Yueh-Ching; Lee, Yue-Chune; Lin, Li-Chan; Kroger, Teppo; Chang, Ai-Ning

    2009-01-01

    A structured interview survey was conducted in a major city in Taiwan to explore and compare older and younger family primary caregivers' well being and their future caregiving plans for these adults with intellectual disability. The sample size was 315 caregivers who were 55 years or older and who cared for adults with intellectual disability and…

  13. Perceptions of the Risks and Benefits of Internet Access and Use by People with Intellectual Disabilities

    Science.gov (United States)

    Chadwick, Darren D.; Quinn, Sally; Fullwood, Chris

    2017-01-01

    Background: Information and communication technologies, with the Internet at the forefront, have the potential to enhance the knowledge, service, employment, development and social interactional opportunities available to people with intellectual disabilities. Despite this, people with intellectual disabilities are not accessing the Internet to…

  14. Characteristics of People with Intellectual Disabilities in a Secure U.S. Forensic Hospital

    Science.gov (United States)

    Stinson, Jill Diane; Robbins, Sharon Bradford

    2014-01-01

    Prior research examining persons with intellectual disabilities who have committed criminal offenses has focused primarily on correctional populations, or those who reside in secure forensic settings in the United Kingdom and Australia. This study describes 235 persons with intellectual, developmental, and cognitive disabilities who reside in a…

  15. Evaluation of a Social Network Intervention for People with Mild to Borderline Intellectual Disabilities

    Science.gov (United States)

    van Asselt-Goverts, A. E.; Embregts, P. J. C. M.; Hendriks, A. H. C.

    2018-01-01

    Background: Little is known about the effectiveness of interventions aimed at enhancing the social networks of people with intellectual disabilities. This study explores the results of such an intervention. How did the clients with mild to borderline intellectual disabilities and their support workers evaluate the intervention? What did they learn…

  16. Cognitive-Behavioral Therapy for Depression in Individuals with Intellectual Disabilities: A Review

    Science.gov (United States)

    James, Jessica S.

    2017-01-01

    Depression is common in individuals with intellectual disabilities, but evidence regarding treatment for this population is lacking. Through a systematic literature review of cognitive-behavioral therapy (CBT) with individuals with intellectual disabilities, a total of six studies were identified that used pretest-post-test nonequivalent control…

  17. Evaluation of a social network intervention for people with mild to borderline intellectual disabilities

    NARCIS (Netherlands)

    van Asselt-Goverts, A.E.; Embregts, P.J.C.M; Hendriks, A.H.C.

    2018-01-01

    Background: Little is known about the effectiveness of interventions aimed at enhancing the social networks of people with intellectual disabilities. This study explores the results of such an intervention. How did the clients with mild to borderline intellectual disabilities and their support

  18. Young children's attitudes toward peers with intellectual disabilities: effect of the type of school.

    Science.gov (United States)

    Georgiadi, Maria; Kalyva, Efrosini; Kourkoutas, Elias; Tsakiris, Vlastaris

    2012-11-01

    This study explored typically developing children's attitudes towards peers with intellectual disabilities, with special reference to the type of school they attended. Two hundred and fifty-six Greek children aged 9-10 (135 in inclusive settings) completed a questionnaire and an adjective list by Gash (European Journal of Special Needs Education 1993; 8, 106) and drew a child with intellectual disabilities, commenting also on their drawings. Typically developing children expressed overall neutral attitudes towards peers with intellectual disabilities. Type of school differentiated their attitudes, with children from inclusive settings being more positive towards peers with intellectual disabilities and choosing less negative adjectives to describe them than children from non-inclusive settings. Girls and students who expressed more positive social, emotional and overall attitudes towards students with intellectual disabilities chose more positive adjectives to describe a child with intellectual disabilities. It was also found that children from inclusive settings drew children with intellectual disabilities as more similar to a child with Down syndrome in comparison with children from non-inclusive settings. Effective inclusive practices should be promoted to foster social acceptance of students with intellectual disabilities. © 2012 Blackwell Publishing Ltd.

  19. Mutations in HIVEP2 are associated with developmental delay, intellectual disability, and dysmorphic features

    NARCIS (Netherlands)

    Steinfeld, Hallie; Cho, Megan T.; Retterer, Kyle; Person, Rick; Schaefer, G. Bradley; Danylchuk, Noelle; Malik, Saleem; Wechsler, Stephanie Burns; Wheeler, Patricia G.; van Gassen, Koen L I; Terhal, P. A.; Verhoeven, Virginie J M; van Slegtenhorst, Marjon A.; Monaghan, Kristin G.; Henderson, Lindsay B.; Chung, Wendy K.

    Human immunodeficiency virus type I enhancer binding protein 2 (HIVEP2) has been previously associated with intellectual disability and developmental delay in three patients. Here, we describe six patients with developmental delay, intellectual disability, and dysmorphic features with de novo likely

  20. Medical Students' Attitudes towards Health Care for People with Intellectual Disabilities: A Qualitative Study

    Science.gov (United States)

    Ryan, Travis A.; Scior, Katrina

    2016-01-01

    Background: People with intellectual disabilities experience serious health inequalities (e.g. they die younger than people without intellectual disabilities). Medical students' attitudes towards health care for this population warrant empirical attention because, as tomorrow's doctors, they will affect the health inequalities that people with…

  1. Effectiveness of Mobile Skill Teaching Software for Parents of Individuals with Intellectual Disability

    Science.gov (United States)

    Cankaya, Serkan; Kuzu, Abdullah

    2018-01-01

    Mobile skill teaching software has been developed for the parents of the children with intellectual disability to be used in teaching daily life skills. The purpose of this research is to investigate the effectiveness of the mobile skill teaching software developed for the use of the parents of the children with intellectual disability. In…

  2. Research Ethics and the Use of Visual Images in Research with People with Intellectual Disability

    Science.gov (United States)

    Boxall, Kathy; Ralph, Sue

    2009-01-01

    The aim of this paper is to encourage debate about the use of creative visual approaches in intellectual disability research and discussion about Internet publication of photographs. Image-based research with people with intellectual disability is explored within the contexts of tighter ethical regulation of social research, increased interest in…

  3. Masculinity Theory in Applied Research with Men and Boys with Intellectual Disability

    Science.gov (United States)

    Wilson, Nathan John; Shuttleworth, Russell; Stancliffe, Roger; Parmenter, Trevor

    2012-01-01

    Researchers in intellectual disability have had limited theoretical engagement with mainstream theories of masculinity. In this article, the authors consider what mainstream theories of masculinity may offer to applied research on, and hence to therapeutic interventions with, men and boys with intellectual disability. An example from one research…

  4. Serum Uric Acid, Hyperuricemia and Body Mass Index in Children and Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Lin, Jin-Ding; Lin, Pei-Ying; Lin, Lan-Ping; Hsu, Shang-Wei; Yen, Chia-Feng; Fang, Wen-Hui; Wu, Sheng-Ru; Chien, Wu-Chien; Loh, Ching-Hui; Chu, Cordia M.

    2009-01-01

    The aims of the preset study were to describe the profile of serum uric acid, the prevalence of hyperuricemia and its risk factors among children and adolescents with intellectual disabilities. We conducted a cross-sectional study of 941 children and adolescents with intellectual disabilities (aged 4-18 years) who participated in annual health…

  5. Attention-Deficit/Hyperactivity Disorder among Children with and without Intellectual Disability: An Examination across Time

    Science.gov (United States)

    Neece, C. L.; Baker, B. L.; Blacher, J.; Crnic, K. A.

    2011-01-01

    Background: Children with intellectual and developmental disabilities are at heightened risk for mental disorders, and disruptive behaviour disorders appear to be the most prevalent. The current study is a longitudinal examination of attention-deficit/hyperactivity disorder (ADHD) among children with and without intellectual disability (ID) across…

  6. Promoting Health of People with Intellectual Disabilities: Views of Professionals Working in Group Homes

    Science.gov (United States)

    Wahlström, Lina; Bergström, Helena; Marttila, Anneli

    2014-01-01

    Deinstitutionalisation has influenced the life situation for people with intellectual disabilities, whilst the experiences of health promotion in group homes now are limited. This study aimed to explore aspects important to consider when promoting health amongst persons with intellectual disabilities in group homes, from the perspective of…

  7. Staffs' Knowledge and Perceptions of Working with Women with Intellectual Disabilities and Mental Health Problems

    Science.gov (United States)

    Taggart, L.; McMillan, R.; Lawson, A.

    2010-01-01

    Aim: There is a growing evidence of the physical and mental health inequalities in people with intellectual disability (ID) although less has been written concerning the mental health of women with ID (International Association for the Scientific Study of Intellectual Disabilities). This is compared with the substantive literature published within…

  8. Groups for Parents with Intellectual Disabilities: A Qualitative Analysis of Experiences

    Science.gov (United States)

    Gustavsson, Marie; Starke, Mikaela

    2017-01-01

    Background: Parents with intellectual disabilities (IDs) are often socially isolated and need support. Materials and Methods: This qualitative study is based on participant observations of a group for parents with with intellectual disabilities. Data were categorized and interpreted in the framework of social capital and symbolic interactionism.…

  9. Effects of Mindfulness-Based Intervention to Improve Task Performance for Children with Intellectual Disabilities

    Science.gov (United States)

    Kim, Jeongil; Kwon, Miyoung

    2018-01-01

    Background: Task performance is a critical factor for learning in individuals with intellectual disabilities. This study aimed to examine mindfulness-based intervention (MBI) to improve task performance for children with intellectual disability (ID). Methods: Three elementary school children with ID participated in the study. A multiple baseline…

  10. A Comparison of Two Methods for Recruiting Children with an Intellectual Disability

    Science.gov (United States)

    Adams, Dawn; Handley, Louise; Heald, Mary; Simkiss, Doug; Jones, Alison; Walls, Emily; Oliver, Chris

    2017-01-01

    Background: Recruitment is a widely cited barrier of representative intellectual disability research, yet it is rarely studied. This study aims to document the rates of recruiting children with intellectual disabilities using two methods and discuss the impact of such methods on sample characteristics. Methods: Questionnaire completion rates are…

  11. Sources of Stress among Parents of Children with Intellectual Disabilities: A Preliminary Investigation in Saudi Arabia

    Science.gov (United States)

    Aldosari, Mubarak S.; Pufpaff, Lisa A.

    2014-01-01

    This study identified differences in sources of stress between parents of male children with intellectual disabilities in Saudi Arabia. Seventeen pairs of parents completed the Parent Stress Index (Abidin, 1995). Each pair of parents had a male child diagnosed with intellectual disability who either attended an institute for male children with…

  12. Impact of Physical Activity on Obesity and Lipid Profile of Adults with Intellectual Disability

    Science.gov (United States)

    Gawlik, Krystyna; Zwierzchowska, Anna; Celebanska, Diana

    2018-01-01

    Introduction: This study assessed overweight, obesity and lipid profiles in adults with intellectual disability and compared these metrics with their physical activity. Materials and Method: Basic somatic parameters, lipid profile and weekly physical activity were examined in 27 adults with moderate intellectual disability. Chi-square independence…

  13. Love and Resistance of Mothers with Intellectual Disability from Ethnocultural Communities in Canada

    Science.gov (United States)

    Pacheco, Laura; McConnell, David

    2017-01-01

    Background: Mothers with intellectual disability are thought to be passive, dependent and in need of protection. This study contributes to a nascent body of research that challenges this schema, revealing how women with intellectual disability who are mothers resist oppression. Methods: Narrative research methods underpinned by intersectionality…

  14. Training of Child and Adolescent Psychiatry Fellows in Autism and Intellectual Disability

    Science.gov (United States)

    Marrus, Natasha; Veenstra-VanderWeele, Jeremy; Hellings, Jessica A.; Stigler, Kimberly A.; Szymanski, Ludwik; King, Bryan H.; Carlisle, L. Lee; Cook, Edwin H., Jr.; Pruett, John R., Jr.

    2014-01-01

    Patients with autism spectrum disorders and intellectual disability can be clinically complex and often have limited access to psychiatric care. Because little is known about post-graduate clinical education in autism spectrum disorder and intellectual disability, we surveyed training directors of child and adolescent psychiatry fellowship…

  15. Comparative Policy Brief: Status of Intellectual Disabilities in the Republic of Haiti

    Science.gov (United States)

    Jacobson, Erik

    2008-01-01

    An estimated 800,000 persons have disabilities in Haiti, but there are no data that refer specifically to those with intellectual disabilities. Traditional fears and stigma about disability are widespread. While the constitution supports the idea that people with disabilities should have autonomy and education, there are no laws to mandate…

  16. Test Anxiety Research: Students with Vision Impairments and Students with Mild Intellectual Disabilities

    Science.gov (United States)

    Datta, Poulomee

    2014-01-01

    There is an absence of research on test anxiety in students with disabilities although such testing is taken for granted among students without disabilities. This study investigated the test anxiety of the students in each of the two disability groups, those with vision impairments and those with intellectual disabilities who are placed in…

  17. Academic self-regulation in students with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Đurić-Zdravković Aleksandra

    2012-01-01

    Full Text Available The aim of this research is to determine the types of academic self-regulation in students with mild intellectual disability and their relation with the examinees' age. The sample consists of 120 examinees of both genders. The selection criteria were: IQ characteristic of mild intellectual disability (51 to 69, age between 12 and 15.11, 5th to 8th grade of primary school, and absence of neurological, psychiatric, expressed emotional and multiple disorders. Academic Self-Regulation Questionnaire was used in this research. The results show the dominance of identified academic regulation in students from the sample. However, by weighting variables, the sample manifested a controlled type according to the unique motivation continuum. It was determined that intrinsic motivation of twelve-year-olds is higher than intrinsic motivation of students in other age groups. Also, we can conclude that statistically significant difference was determined in the level of self-regulation among the examinees of different ages. This means that the behavior of twelve-year-olds is more self-regulated than that of fifteen-year-old students.

  18. Credibility assessment of testimonies provided by victims with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Antonio L. MANZANERO

    2017-09-01

    Full Text Available One of the main obstacles in the way of access to justice for the victims with intellectual disability comes from the stereotypes referred to their ability to produce a statement at police legal procedures, with the consequence that some consider their statements less reliable than the rest of the victims, and others considerate their statements more reliable given their inability to create complex lies. This article reviews three of the most recent studies done by the UCM group of Psychology of Testimony, with the objective of analyzing the role of experience and intuition in the evaluation of credibility in people with intellectual disability (ID, and also it aims to prove whether the credibility analysis procedures such as Reality Monitoring (RM and Statement Validity Assessment (SVA would be valid procedures to discriminate between real and false statements within these collectives. From the results of these studies, it can be deducted that experience may not seem to be enough in order to discriminate between real and simulated victims, but analyzing the characteristics of the statements as the only indicator doesn’t seem to be enough either. As an alternative, the general procedure HELPT is proposed for the evaluation of credibility of people with ID.

  19. Human rights and intellectual disabilities in an era of 'choice'.

    Science.gov (United States)

    Fyson, R; Cromby, J

    2013-12-01

    Efforts to uphold and promote the human rights of people with intellectual disabilities (ID) are being affected by the increasing emphasis on 'choice' in the delivery of social care services. While rights presume subjects or selves to whom they apply, there is a disconnect between the subjects presumed within human rights frameworks and the variable capacities of a heterogeneous ID population. This disconnect is amplified by choice discourses which characterise current service provision based upon neoliberal ideologies. Conceptual assumptions and theoretical positions associated with human rights in relation to people with ID are critically examined. The analysis results in an argument that current conceptualisations of personhood in relation to human rights exclude people with ID. The adverse effects of this exclusion are exacerbated within services which emphasise the permissive rights associated with a neoliberal agenda of 'choice' over protective rights. In order to ensure that the human rights of people with ID are upheld, neoliberal emphases on choice need to be tempered and a more nuanced and inclusive notion of personhood in relation to universal human rights needs to be adopted. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 John Wiley & Sons Ltd, MENCAP & IASSID.

  20. Modifying the 'Positive Parenting Program' for parents with intellectual disabilities.

    Science.gov (United States)

    Glazemakers, I; Deboutte, D

    2013-07-01

    Many parents with intellectual disabilities (ID) want and/or need professional guidance and support to learn skills and strategies to prevent and manage child behaviour problems. However, the available support is rarely suitable, and suitable support is rarely available. The aim of this study was to determine whether a popular mainstream parenting training programme, known as 'Group Triple P' (Positive Parenting Program), could be successfully modified for this parent group. A pilot study was undertaken to determine whether a modified version of Group Triple P would engage and retain parents with ID. A non-experimental, pre-test post-test study, involving a total of 30 parents with ID, was then undertaken to obtain preliminary efficacy data. Parent engagement and participation levels were high. No parent 'dropped out' of the programme. After completing the modified Group Triple P programme, parents reported a decrease in psychological distress, maladaptive parenting and child conduct problems. Parents reported high levels of satisfaction with the information and support they received. Research-informed adaptation of mainstream behavioural family interventions, such as Group Triple P, could make 'suitable support' more readily available, and more engaging for parents with ID. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 John Wiley & Sons Ltd, MENCAP & IASSID.

  1. [Community trajectories of mentally ill and intellectually disabled young people].

    Science.gov (United States)

    Fleury, Marie-Josée; Grenier, Guy

    2013-01-01

    In the context of reforms in the field of disability, this study documents the trajectories and mechanisms of support for young people with mental illness or intellectual disability or pervasive developmental disorders, during the teen-adult life transition period; andfactorsfostering or impeding this transition for their maintenance in an everyday environment, particularly in SESSAD (special education and home care service) and the SAMSAH/ SPAC (medico-social support for adults with disabilities/support services in social life). This study was conducted in the French department of Seine-et-Marne. It was supported by a mixed call for tenders, in which 77 respondents (professionals, families and users), and 26 organizations were consulted. The study shows that few young adults in SAMSAH/SPAC programmes are derived from SESSAD, and they encounter major difficulties living in an everyday environment, particularly during the transition period. Clinical or socio-economic factors related to the profiles of users or healthcare service organization facilitate or hinder the inclusion of young people in an everyday environment. Support for users was also often limited to followup over a suboptimal period, and was hampered by insufficient networking within the regional healthcare system. On the other hand, empowerment of users and their optimal inclusion in an everyday environment, as founding principles of the reform, constitute major action priorities for healthcare structures. Strengthening services for young people (16-25 years), including integration strategies, is recommended in order to establish an integrated network of services in the field of disability.

  2. Familias de Adultos con Discapacidad Intelectual en Cali, Colombia, Desde el Modelo de Calidad de Vida Families of Adults With Intellectual Disability in Cali, Colombia, Using the Model of Quality of Life

    Directory of Open Access Journals (Sweden)

    Leonor Córdoba

    2007-11-01

    Full Text Available Cada día aumenta la expectativa de vida para personas con discapacidad intelectual (DI/RM. El objetivo de esta investigación fue describir la calidad de vida de familias de adultos con DI/RM en Cali, Colombia. La muestra estuvo conformada por 158 familias. Se utilizaron dos instrumentos de recogida de información un Cuestionario Sociodemográfico y la Escala de Calidad de Vida Familiar (Beach Center, 2001, ésta última adaptada previamente a población colombiana (Verdugo, Córdoba & Gómez, 2005, 2006. Los principales hallazgos demostraron que la calidad de vida de las familias está afectada por la falta de oportunidades para la inclusión social de personas adultas con DI/RM. Estas dificultades, aparentemente, desencadenan efectos en el bienestar del adulto con DI/RM y su familia. Los resultados proveen información para la definición de políticas sociales para estas familias.Everyday the life expectancy for people with intellectual disabilities (ID/MR increases. The aim of this research was to describe the quality of life of the families of adults with ID in Cali, Colombia. The sample consisted of 158 families. Two instruments for gathering information were used: a Sociodemographic Questionnaire, and the Family Quality of Life Scale (Beach Center, 2001. The latter was previously adapted for the Colombian population (Verdugo, Córdoba & Gómez, 2005, 2006. The main findings showed that family quality of life is affected by the lack of opportunities for social inclusion in adults with ID/MR. These difficulties lead to repercussions on the wellbeing of the adult with ID/MR and his or her family. The results provide information for the definition of social policies for these families.

  3. Patterns of sport participation for youth with autism spectrum disorder and intellectual disability.

    Science.gov (United States)

    Ryan, Stephanie; Fraser-Thomas, Jessica; Weiss, Jonathan A

    2018-05-01

    Little is known about sport participation in youth with Autism Spectrum Disorder (ASD). The current study examined sport characteristics (frequency, diversity, positive social experiences [PSE]) for youth with ASD and intellectual disability compared to youth with intellectual disability alone and explored the personal and contextual correlates of involvement. Parents (N = 409) completed an online survey, and multiple mediation analyses were used to examine the factors that explained the relationships between sport involvement in youth with ASD and intellectual disability. No significant main effects of ASD status were found for frequency or diversity, but youth with intellectual disability alone had higher scores for PSE compared to youth with ASD and intellectual disability. Sociocommunicative abilities, coach relationship and resources mediated the relationship between ASD status and PSE. A better understanding of the factors related to sport is essential for allowing families, service providers and policy makers to improve involvement for youth with ASD. © 2017 John Wiley & Sons Ltd.

  4. The Association between Education and Mortality for Adults with Intellectual Disability.

    Science.gov (United States)

    Landes, Scott D

    2017-03-01

    Although the relationship between education and mortality is well documented in the general population, it has not been examined for adults with intellectual disability. Informed by fundamental cause theory, I explore the association between education and mortality in a sample of 4,241 adults with intellectual disability from the 1986-2009 National Health Interview Survey with Linked Mortality Files through 2011. Cox regression models were utilized to analyze the predictive effect of education on mortality risk while taking into account birth cohort differences. Increased education was associated with lower mortality risk for adults with intellectual disability, and this relationship strengthened in later birth cohorts who had greater access to the public education system. Comparison with a sample of 21,205 adults without intellectual disability demonstrates that the association between education and mortality risk was not as robust for adults with intellectual disability and highlights the ongoing socioeconomic challenges faced by this population.

  5. Intellectual disability, mental illness and offending behaviour: forensic cases from early twentieth-century Ireland.

    Science.gov (United States)

    Kelly, B D

    2010-09-01

    The history of institutional care for individuals with intellectual disability is under-researched, complex and troubling. To explore the experiences of women who may have had intellectual disability and/or mental illness and were admitted to forensic psychiatric care in early twentieth-century Ireland. All female case records at the Central Mental Hospital, Dublin from 1910 to 1948 (n = 42) were studied for evidence of possible intellectual disability and a series of five cases is presented in detail. These committals occurred in the context of adverse social conditions, over-crowding in asylums and a belief that rates of mental illness were rising. Particular challenges included diagnostic issues (especially in relation to intellectual disability), adjustment to asylum environments, mental illness and physical ill-health. The institutional experiences of individuals with intellectual disability represents an important area for further historical research, using larger and more varied forensic populations.

  6. Eye movement desensitization and reprocessing in an adolescent with epilepsy and mild intellectual disability.

    Science.gov (United States)

    Rodenburg, Roos; Benjamin, Anja; Meijer, Anne Marie; Jongeneel, Ruud

    2009-09-01

    Intellectual disability is a comorbid condition in epilepsy. People with epilepsy and intellectual disability are at high risk of developing behavioral problems. Among the many contributors to behavioral problems in people with epilepsy and intellectual disability are those of traumatic experiences. As such, behavioral problems can be seen as a reflection of these traumatic experiences. Among established trauma therapies, eye movement desensitization and reprocessing (EMDR) is an emerging treatment that is effective in adults and also seems to be effective in children. This article is a case report of EMDR in an adolescent with epilepsy and mild intellectual disability, in whom the EMDR children's protocol was used. The aim was to assess whether clinical trauma status significantly diminished to nonclinical status posttreatment. Change in trauma symptoms was evaluated with the Reliable Change Index (RCI). Results showed a significant decrease in trauma symptoms toward nonclinical status from pretreatment to posttreatment. EMDR consequences for epilepsy and intellectual disability are discussed.

  7. Use of health services in the last year of life and cause of death in people with intellectual disability: a retrospective matched cohort study.

    Science.gov (United States)

    Brameld, Kate; Spilsbury, Katrina; Rosenwax, Lorna; Leonard, Helen; Semmens, James

    2018-02-25

    To describe the cause of death together with emergency department presentations and hospital admissions in the last year of life of people with intellectual disability. A retrospective matched cohort study using de-identified linked data of people aged 20 years or over, with and without intellectual disability who died during 2009 to 2013 in Western Australia. Emergency department presentations and hospital admissions in the last year of life of people with intellectual disability are described along with cause of death. Of the 63 508 deaths in Western Australia from 2009 to 2013, there were 591 (0.93%) decedents with a history of intellectual disability. Decedents with intellectual disability tended to be younger, lived in areas of more social disadvantage, did not have a partner and were Australian born compared with all other decedents. A matched comparison cohort of decedents without intellectual disability (n=29 713) was identified from the general population to improve covariate balance.Decedents with intellectual disability attended emergency departments more frequently than the matched cohort (mean visits 3.2 vs 2.5) and on average were admitted to hospital less frequently (mean admissions 4.1 vs 6.1), but once admitted stayed longer (average length of stay 5.2 days vs 4.3 days). People with intellectual disability had increased odds of presentation, admission or death from conditions that have been defined as ambulatory care sensitive and are potentially preventable. These included vaccine-preventable respiratory disease, asthma, cellulitis and convulsions and epilepsy. People with intellectual disability were more likely to experience potentially preventable conditions at the end of their lives. This indicates a need for further improvements in access, quality and coordination of healthcare to provide optimal health for this group. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved

  8. A mixed methods study to develop and pilot a competency assessment tool to support midwifery care of women with intellectual disabilities.

    Science.gov (United States)

    Beake, Sarah; Clark, Louise L; Turner, Toni; Bick, Debra

    2013-08-01

    Recent reports have highlighted the poor quality of health care received by people with intellectual disabilities (otherwise known as 'learning disabilities') in the United Kingdom (UK). UK Confidential Enquiries into maternal deaths have highlighted adverse pregnancy outcomes for women with intellectual disabilities and need for timely and appropriate clinical care. To develop and test a competency assessment tool to support midwifery care of women with intellectual disabilities. A mixed methods study. Large inner city maternity unit. Midwives and key experts in intellectual disabilities, maternity policy and midwifery education. Phase one comprised a systematic narrative review of the literature. Evidence identified informed phase two which included focus groups and interviews. Emergent themes informed the development of a competency assessment tool which was piloted in phase three. Phase one: Four primary research papers and two systematic reviews met the review inclusion criteria. Support to develop parenting skills of women with intellectual disabilities was highlighted as was the need to optimise organisation of maternity services. No studies specifically considered midwifery competencies to support women with intellectual disabilities. Phase two: 23 midwives attended three focus groups and individual interviews were conducted with national leaders in intellectual disability (n=6) and midwifery policy and education (n=7). Themes identified included need for individualised care provided by a known midwife, the importance of effective communication skills and need for clear knowledge and understanding of the legislative framework relevant to intellectual disability. Phase three: A convenience sample of 60 midwives was asked to participate in a pilot study to test the tool, 46 (77%) of whom responded. Thirty midwives (65%) felt competent in their ability to recognise intellectual disability and 37 (80%) competent or expert in understanding women have the right

  9. Contribution of Leisure Satisfaction, Acceptance Disability, and Social Relationship to Life Satisfaction among Korean Individuals with Intellectual Disability

    Science.gov (United States)

    Kim, Junhyoung; Schilling, Mary Lou; Kim, May; Han, Areum

    2016-01-01

    There is a dearth of literature that explores the relationships among leisure satisfaction, acceptance of disability, social relationships, and life satisfaction among adults with intellectual disability from Eastern countries. The purpose of this study was to examine how leisure satisfaction, disability acceptance, and social relationships are…

  10. Oral health in children with physical (Cerebral Palsy) and intellectual (Down Syndrome) disabilities: Systematic review I.

    Science.gov (United States)

    Diéguez-Pérez, Montserrat; de Nova-García, Manuel-Joaquín; Mourelle-Martínez, M Rosa; Bartolomé-Villar, Begona

    2016-07-01

    Traditionally, patients with physical and/or intellectual disabilities presented greater oral pathology, owing to their condition and to other external factors. Improved social and health conditions make it necessary to update knowledge on their oral and dental health. For this purpose, a bibliographic review was done regarding the state of oral health of children with these two types of disability, in comparison with a control group. Some of the guidelines of the PRISMA statement were taken into account. The ranking of the articles found is based on the modified Newcastle-Ottawa Quality Assessment Scale. The final number of articles evaluated was 14. Parameters such as dental caries, oral hygiene, gingival health, dental traumas, malocclusion and habits were considered. There is no consensus among authors regarding dental caries, oral hygiene and gingival health. The different results obtained are due in part to the fact that the methodologies used were not the same. However, it has been noted that, when studying other parameters and regardless of the methodology employed, the results obtained are similar. Children with physical and intellectual disabilities constitute a group that needs early and regular dental care in order to prevent and limit the severity of the pathologies observed. Oral health, dental caries, malocclusion, oral habits, dental trauma, oral hygiene, disabled child, cerebral palsy and Down syndrome.

  11. Intellectual disability in cerebral palsy: a population-based retrospective study.

    Science.gov (United States)

    Reid, Susan M; Meehan, Elaine M; Arnup, Sarah J; Reddihough, Dinah S

    2018-04-18

    A population-based observational study design was used to describe the epidemiology of intellectual disability in cerebral palsy (CP) in terms of clinical and neuroimaging associations, and to report the impact of intellectual disability on utilization of health services and length of survival. Population CP registry data were used to retrospectively assess the frequency of intellectual disability and strength of associations between intellectual disability and mobility, epilepsy, vision, hearing, communication, and neuroimaging patterns (n=1141). Data linkage was undertaken to assess usage of hospital inpatient and emergency department services. Survival analysis was performed in a 30-year birth cohort (n=3248). Intellectual disability, present in 45% of the cohort, was associated with non-ambulation (47% vs 8%), later walking (mean 2y 7mo vs 1y 9mo), hypotonic (8% vs 1%) or dyskinetic (9% vs 5%) CP, a quadriplegic pattern of motor impairment (42% vs 5%), epilepsy (52% vs 12%), more emergency and multi-day hospital admissions, and reduced 35-year survival (96% vs 71%). Grey matter injuries (13% vs 6%), malformations (18% vs 6%), and miscellaneous neuroimaging patterns (12% vs 4%) were more common in people with intellectual disability. Intellectual disability adds substantially to the overall medical complexity in CP and may increase health and mortality disparities. Cerebral maldevelopments and grey matter injuries are associated with higher intellectual disability rates. Health care is more 'crisis-driven' and 'reactive' in children with co-occurring intellectual disability. Length of survival is reduced in individuals with CP and co-occurring intellectual disability. © 2018 Mac Keith Press.

  12. Parents of children with and without intellectual disability: couple relationship and individual well-being.

    Science.gov (United States)

    Norlin, D; Broberg, M

    2013-06-01

    Research on parents of children with intellectual disability (ID) has identified a range of risk and protective factors for parental well-being. In family research, the association between marital quality and depression is a vital field of investigation. Still little research has addressed how aspects of the couple relationship affect the adaptation of parents of children with ID. The present study examined predictive links between couple relationship factors (marital quality and coparenting quality) and individual well-being. Data were obtained through self-report questionnaires completed by parents of children with ID (mothers, n = 58; and fathers, n = 46) and control children (mothers, n = 178; and fathers, n = 141). To test the hypothesis that couple relationship factors predicted individual well-being, multiple regression analyses were performed controlling for the following risk factors identified by previous research: child self-injury/stereotypic behaviour, parenting stress, and economic risk. Marital quality predicted concurrent well-being, and coparenting quality predicted prospective well-being. Mothers of children with ID reported lower well-being than other parents. There is a continued need for investigation of the details of the links between couple relationship and individual well-being in parents of children with ID. Couple relationship factors should be given consideration in clinical interventions. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 John Wiley & Sons Ltd, MENCAP & IASSID.

  13. Numerical and spatial cognition of students with physical disabilities and mild intellectual disabilities

    OpenAIRE

    Vidmar, Anja

    2017-01-01

    Mathematics has an important effect on an individual's successfulness and satisfaction in the field of education and life. Numerical and spatial cognition are of crucial importance to successfully master mathematics. If this kind of cognition is poorly developed, it represents one of the most important obstacles to achieving success in the field of mathematics. Students with mild intellectual disabilities are in a worse position already at the starting point of the educational process, as the...

  14. Systemic therapy and the social relational model of disability: enabling practices with people with intellectual disability

    OpenAIRE

    Haydon-Laurelut, Mark

    2009-01-01

    Therapy has been critiqued for personalizing the political (Kitzinger, 1993). The social-relational model (Thomas, 1999) is one theoretical resource for understanding the practices of therapy through a political lens. The social model(s) have viewed therapy with suspicion. This paper highlights – using composite case examples and the authors primary therapeutic modality, systemic therapy – some systemic practices with adults with Intellectual Disability (ID) that enact a position that it is s...

  15. Intellectual developmental disorders: towards a new name, definition and framework for "mental retardation/intellectual disability" in ICD-11.

    Science.gov (United States)

    Salvador-Carulla, Luis; Reed, Geoffrey M; Vaez-Azizi, Leila M; Cooper, Sally-Ann; Martinez-Leal, Rafael; Bertelli, Marco; Adnams, Colleen; Cooray, Sherva; Deb, Shoumitro; Akoury-Dirani, Leyla; Girimaji, Satish Chandra; Katz, Gregorio; Kwok, Henry; Luckasson, Ruth; Simeonsson, Rune; Walsh, Carolyn; Munir, Kemir; Saxena, Shekhar

    2011-10-01

    Although "intellectual disability" has widely replaced the term "mental retardation", the debate as to whether this entity should be conceptualized as a health condition or as a disability has intensified as the revision of the World Health Organization (WHO)'s International Classification of Diseases (ICD) advances. Defining intellectual disability as a health condition is central to retaining it in ICD, with significant implications for health policy and access to health services. This paper presents the consensus reached to date by the WHO ICD Working Group on the Classification of Intellectual Disabilities. Literature reviews were conducted and a mixed qualitative approach was followed in a series of meetings to produce consensus-based recommendations combining prior expert knowledge and available evidence. The Working Group proposes replacing mental retardation with intellectual developmental disorders, defined as "a group of developmental conditions characterized by significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills". The Working Group further advises that intellectual developmental disorders be incorporated in the larger grouping (parent category) of neurodevelopmental disorders, that current subcategories based on clinical severity (i.e., mild, moderate, severe, profound) be continued, and that problem behaviours be removed from the core classification structure of intellectual developmental disorders and instead described as associated features.

  16. Adapting Building Design to Access by Individuals with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    L Castell

    2012-11-01

    Full Text Available Over the last 15 years, since introductionof the Disability Discrimination Act (DDA(Commonwealth Government of Australia,1992, there has been much discussionabout the extent and nature of buildingaccess for the disabled, particularly inresponse to proposed revisions to theBuilding Code of Australia (BCA and theintroduction of a Premises Standardcovering building access. Much of theargument which contributed to the twoyear delay in submitting a final version ofthese documents for government approvalrelated to the extent of access provisionsand the burden of cost. The final versionsubmitted to government by the AustralianBuilding Codes Board (ABCB (notreleased publicly appears to still containinconsistencies between the DDA and theBCA in several areas such as wayfindingand egress.In the debate preceding submission of thefinal version there appears to have beenlittle reference to access requirements forindividuals with intellectual disability (ID.This may be due to a general lack ofresearch on the topic. Consequently, thispaper uses a combination of theknowledge gained from a limited numberof previous wayfinding studies, literaturedescribing general problems faced bythose with ID and the author’s personalexperience observing others with ID tocreate a list of probable difficulties andsuggested solutions. The paperconcludes with a discussion about theassociated cost implications and benefitsin providing the required access.

  17. Stair-Walking Performance in Adolescents with Intellectual Disabilities

    Directory of Open Access Journals (Sweden)

    Wann-Yun Shieh

    2016-07-01

    Full Text Available Most individuals with intellectual disabilities (ID demonstrate problems in learning and movement coordination. Consequently, they usually have difficulties in activities such as standing, walking, and stair climbing. To monitor the physical impairments of these children, regular gross motor evaluation is crucial. Straight-line level walking is the most frequently used test of their mobility. However, numerous studies have found that unless the children have multiple disabilities, no significant differences can be found between the children with ID and typically-developed children in this test. Stair climbing presents more challenges than level walking because it is associated with numerous physical factors, including lower extremity strength, cardiopulmonary endurance, vision, balance, and fear of falling. Limited ability in those factors is one of the most vital markers for children with ID. In this paper, we propose a sensor-based approach for measuring stair-walking performance, both upstairs and downstairs, for adolescents with ID. Particularly, we address the problem of sensor calibration to ensure measurement accuracy. In total, 62 participants aged 15 to 21 years, namely 32 typically-developed (TD adolescents, 20 adolescents with ID, and 10 adolescents with multiple disabilities (MD, participated. The experimental results showed that stair-walking is more sensitive than straight-line level walking in capturing gait characteristics for adolescents with ID.

  18. DIAGNOSIS AND TREATMENT OF DEPRESSION IN PERSONS WITH INTELLECTUAL DISABILITY

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    Katarina Tomić1,

    2011-09-01

    Full Text Available This paper considers, from the theoretical point of view, the problem of diagnosing and treatment of depressive disorders in people with intellectual disability (ID, relying primarily on the results of previous researches, which stress the etiological, symptomatic, diagnostic and therapeutic specifics when it comes to depression and its correlates in this population. The interest in mental health and psychopathology of people with ID intensified during the seventh decade of the previous century, when it became clear that some cognitive and behavioral symptoms are not, as hitherto thought, only a part or a consequence of the syndrome of intellectual disability, but a sign of ongoing mental disorder. So, the idea of ''dual diagnosis'' was born, and now it provides guidelines for the growing number of studies which theoretically and empirically review different issues of mental health problems in people with ID. Likewise, the observation of syndrome groups of genetic disorders resulting in intellectual disability has led to the narrowing of the circle of genetic syndromes that carry increased risk for the onset of depression and its correlates, such as: Down syndrome, Fragile X syndrome and Prader-Willi syndrome. Potential diagnostic problem in people with ID, when it comes to depression, may arise from ''diagnostic overshadowing’’ of depression symptoms, which often remain hidden under abnormal behavior and adjustment disorders, especially in patients with severe forms of ID. As a possible way to overcome these problems some authors have proposed the concept of ''behavioral equivalents of depression'' or behavioral disorders that evidently can be associated with depression, such as social withdrawal, aggression, hostility, irritability, psychomotor agitation or retardation. Intensification of these forms of behavior may be a sign of developing depression, and in that sense, this view represents a useful starting point. When it comes to

  19. Postoperative adverse outcomes in intellectually disabled surgical patients: a nationwide population-based study.

    Directory of Open Access Journals (Sweden)

    Jui-An Lin

    Full Text Available BACKGROUND: Intellectually disabled patients have various comorbidities, but their risks of adverse surgical outcomes have not been examined. This study assesses pre-existing comorbidities, adjusted risks of postoperative major morbidities and mortality in intellectually disabled surgical patients. METHODS: A nationwide population-based study was conducted in patients who underwent inpatient major surgery in Taiwan between 2004 and 2007. Four controls for each patient were randomly selected from the National Health Insurance Research Database. Preoperative major comorbidities, postoperative major complications and 30-day in-hospital mortality were compared between patients with and without intellectual disability. Use of medical services also was analyzed. Adjusted odds ratios using multivariate logistic regression analyses with 95% confidence intervals were applied to verify intellectual disability's impact. RESULTS: Controls were compared with 3983 surgical patients with intellectual disability. Risks for postoperative major complications were increased in patients with intellectual disability, including acute renal failure (odds ratio 3.81, 95% confidence interval 2.28 to 6.37, pneumonia (odds ratio 2.01, 1.61 to 2.49, postoperative bleeding (odds ratio 1.35, 1.09 to 1.68 and septicemia (odds ratio 2.43, 1.85 to 3.21 without significant differences in overall mortality. Disability severity was positively correlated with postoperative septicemia risk. Medical service use was also significantly higher in surgical patients with intellectual disability. CONCLUSION: Intellectual disability significantly increases the risk of overall major complications after major surgery. Our findings show a need for integrated and revised protocols for postoperative management to improve care for intellectually disabled surgical patients.

  20. Co-researching with people who have intellectual disabilities: insights from a national survey.

    Science.gov (United States)

    O'Brien, Patricia; McConkey, Roy; García-Iriarte, Edurne

    2014-01-01

    Inclusive research with people with intellectual disabilities is growing internationally but with few studies examining its feasibility. In undertaking a national study exploring what life was like in Ireland for people with intellectual disabilities, a community of practice was developed involving a core group of co-researchers: five people with intellectual disabilities, four university researchers and three service support staff. An additional cadre of 15 co-researchers with intellectual disabilities was recruited to undertake data gathering and analysis with 23 focus groups involving 168 participants. The research experience was documented through oral feedback, progress reports, minutes and a project review. The key learning is documented arising from the setting up of an inclusive advisory group and implementation of each of six research steps. The study demonstrates feasibility and the added value of university co-researchers recruiting and developing skills together with co-researchers with intellectual disabilities. Topics for further research and development are identified. This paper tells you about how people with intellectual disabilities worked with a group of university researchers. Both groups were called co-researchers and together they ran 23 focus groups across Ireland. People with intellectual disabilities talked about their lives and what could make them better. They said they needed to have a good place to live; a job; enough money; relationships; and acceptance as respected citizens. The university co-researchers wrote about what it was like doing research together and how people with intellectual disabilities joined the advisory group; decided on the questions; ran focus groups; and presented findings. Together they grew into a community of researchers where the university co-researchers shared their research skills and people with intellectual disabilities shared what it was like living with a disability. They both saw great value in

  1. Concept of death in young people with intellectual disability: a contribution to the pedagogy on death

    Directory of Open Access Journals (Sweden)

    Pablo RODRÍGUEZ HERRERO

    2015-03-01

    Full Text Available Despite being an essential human condition, death is an under-researched area in the effort to improve people with intellectual disabilities’ life quality. In this article we describe the concept of death among young people with intellectual disabilities. A mixed research methodology that includes quantitative and qualitative approaches was employed, including both a questionnaire and a semi-structured interview. Results indicate that participants have difficulty understanding of biological dimensions of death. Moreover, it has been found that participants present a wide range of opinions, attitudes and beliefs about death. Conclusions reflect on implications of these results for a possible pedagogy on death in young adults that would include accompaniment during bereavement.

  2. General Practitioners' Perceptions on Clinical Management and Training Needs regarding the Healthcare of Community-Dwelling People with Intellectual Disability: A Preliminary Survey in Singapore.

    Science.gov (United States)

    Sajith, Sreedharan Geetha; Goh, Yen-Li; Wee, Joshua Marcus

    2017-11-01

    Studies worldwide indicate that people with intellectual disability have high risks of physical and mental morbidities, and poor quality of health care. This study was aimed at determining general practitioners' perceptions on barriers in clinical assessment and training needs with regard to the healthcare of community-dwelling people with intellectual disability. A survey questionnaire was developed specifically for the study through focus group discussions and a literature review. The study was conducted as a cross-sectional anonymous survey of private general practitioners practicing in Singapore. The survey contained questions on their experience and training needs in assessing and treating patients with intellectual disability. Forty-nine of the 272 questionnaires sent out were returned. The respondents were predominantly male general practitioners working in "solo" practices. For most general practitioners, the proportion of patients with intellectual disability ranged from 1% to 5%. Nearly 90% of general practitioners identified problems in communicating with such patients as an important barrier that affected the quality of assessment of their health conditions. Other barriers identified were behavioral issues and sensory impairments. Only one-third of the general practitioners were confident that they had sufficient knowledge of physical and mental health conditions related to patients with intellectual disability. Three-fourths of the general practitioners believed that further training in this area would be beneficial. Appropriate interventions to address barriers in assessment and management of patients with intellectual disability with further training for general practitioners may improve the standard of healthcare provided to this population group.

  3. How Do Children With Mild Intellectual Disabilities Perceive Loneliness?

    Directory of Open Access Journals (Sweden)

    Kalliopi Papoutsaki

    2013-02-01

    Full Text Available The present study examined 154 children with mild intellectual disability (MID attending special schools with regard to their reports of loneliness. Semi-structured interviews revealed that more than half of the students with MID reported feelings of loneliness. They tend to have as friends children from their neighborhood, friends of their siblings, children of their parents’ friends and from their school. Lonely children with MID tend to attribute their isolation to interpersonal deficits, lack of contact with peers and physical appearance, while one fourth cannot justify why they do not have any friends. Children with MID report that they withdraw from social interactions, engage in solitary activities and actively look for friends to cope with their feelings of loneliness and rejection, while very few resort to physical or verbal aggression. Moreover, boys and children living in smaller towns reported less feelings of loneliness than girls and children living in the capital.

  4. Prescribing psychotropic drugs to adults with an intellectual disability

    Science.gov (United States)

    Trollor, Julian N; Salomon, Carmela; Franklin, Catherine

    2016-01-01

    SUMMARY Mental illness is common in people with intellectual disability. They may also have physical health problems which can affect their mental state. Difficulties in communication can contribute to mental health problems being overlooked. These may present with changes in behaviour. Psychological management is usually preferable to prescribing psychotropic drugs. Behavioural approaches are the most appropriate way to manage challenging behaviour. If a drug is considered, prescribers should complete a thorough diagnostic assessment, exclude physical and environmental contributions to symptoms, and consider medical comorbidities before prescribing. Where possible avoid psychotropics with the highest cardiometabolic burden. Prescribe the minimum effective dose and treatment length, and regularly monitor drug efficacy and adverse effects. There is insufficient evidence to support the use of psychotropics for challenging behaviour. They should be avoided unless the behaviour is severe and non-responsive to other treatments. PMID:27756975

  5. Intellectual disability and impact on oral health: a paired study.

    Science.gov (United States)

    Oliveira, Juliana Santos; Prado Júnior, Raimundo Rosendo; de Sousa Lima, Kássio Rafael; de Oliveira Amaral, Heylane; Moita Neto, José Machado; Mendes, Regina Ferraz

    2013-01-01

    The objective was to assess the oral health status, the treatment needed, and the type of dental health services access of intellectually disabled (ID) subjects in Teresina, Brazil. The sample consisted of 103 ID subjects matriculated in centers for special needs people and 103 siblings. Results were analyzed using paired t-test, chi-square test, and odds ratio. ID subjects had fair (63.1%; p siblings had a good oral hygiene (n = 103 [55.3%]; p siblings. Thirty percent of ID subjects had never received dental treatment and had difficulty accessing public health services. Their treatment needs were, therefore, higher than non-ID subjects. The access to oral health services was unsatisfactory, thus it is important to implement educational and health promotion inclusion policies for people with ID. ©2013 Special Care Dentistry Association and Wiley Periodicals, Inc.

  6. Participation Patterns of Preschool Children With Intellectual Developmental Disabilities.

    Science.gov (United States)

    Gilboa, Yafit; Fuchs, Reut

    2018-04-01

    We aim to examine the pattern of participation of children with intellectual developmental disabilities (IDD) or global developmental delay (GDD) in comparison with typically developing preschoolers. In addition, to identify environmental and personal factors associated with their participation, 20 children with mild to moderate GDD or IDD, and 24 age- and gender-matched controls, aged 3 to 6 years, were assessed using the Assessment of Preschool Children's Participation and the Environmental Restriction Questionnaire. Significant differences were found between the groups, both for general scales of participation and for each activity area. For the IDD/GDD group, participation was significantly negatively correlated with environmental restrictions at home. For the control group, participation was correlated with demographic variables. Typically developing children participate at a higher frequency and in a more diverse range of activities compared with children with IDD/GDD. Associations between participation and contextual factors varied depending on the child's health condition.

  7. Experiences of parents of children with intellectual disabilities in the Ashanti Region of Ghana

    Directory of Open Access Journals (Sweden)

    Eric Badu

    2016-07-01

    Full Text Available Parents of children with intellectual disabilities could experience difficulties associated with their care. Yet, insight into individual experiences is inadequate to guide effective responses to the needs of parents and their sons and daughters with intellectual disability. This study sought to explore the experiences of parents of children with intellectual disability with the aim of making these experiences visible to guide the design and provision of support services for the parents and their children. In-depth interviews were conducted with 20 parents of children with intellectual disability between the ages of 4 and 15 years residing in the Ashanti Region of Ghana. Data were analyzed using qualitative content analysis to explore themes that describe the experiences of the parents. The study found that parents of intellectually disabled children encounter challenges looking after their children due to the negative perceptions associated with having such children. Financial costs and managing behavioral challenges of intellectually disabled children were also major sources of stressors for parents. Although informal support and assurances from professionals alleviated parental stress and gave them some hope about the future of their children, these support services seem inadequate. A more structured support programme that includes financial empowerment of the parents and recognizes the importance of early detection and intervention practices is needed.  Keywords: Intellectual disability, parents, caregivers, support services, health professionals

  8. Intelligence and specific cognitive functions in intellectual disability: implications for assessment and classification.

    Science.gov (United States)

    Bertelli, Marco O; Cooper, Sally-Ann; Salvador-Carulla, Luis

    2018-03-01

    Current diagnostic criteria for intellectual disability categorize ability as measured by IQ tests. However, this does not suit the new conceptualization of intellectual disability, which refers to a range of neuropsychiatric syndromes that have in common early onset, cognitive impairments, and consequent deficits in learning and adaptive functioning. A literature review was undertaken on the concept of intelligence and whether it encompasses a range of specific cognitive functions to solve problems, which might be better reported as a profile, instead of an IQ, with implications for diagnosis and classification of intellectual disability. Data support a model of intelligence consisting of distinct but related processes. Persons with intellectual disability with the same IQ level have different cognitive profiles, based on varying factors involved in aetiopathogenesis. Limitations of functioning and many biopsychological factors associated with intellectual disability are more highly correlated with impairments of specific cognitive functions than with overall IQ. The current model of intelligence, based on IQ, is of limited utility for intellectual disability, given the wide range and variability of cognitive functions and adaptive capacities. Assessing level of individual impairment in executive and specific cognitive functions may be a more useful alternative. This has considerable implications for the revision of the International Classification of Diseases and for the cultural attitude towards intellectual disability in general.

  9. Families' perceptions of the contribution of intellectual disability clinical nurse specialists in Ireland.

    Science.gov (United States)

    Doody, Owen; Slevin, Eamonn; Taggart, Laurence

    2018-01-01

    To explore families' perceptions of the contribution of clinical nurse specialists in intellectual disability nursing in Ireland. Clinical nurse specialists roles have developed over the years and are seen as complex and multifaceted, causing confusion, frustration and controversy. 2001 saw the formal introduction of clinical nurse specialists roles in Ireland across nursing including intellectual disability. A exploratory qualitative approach using semistructured one-to-one interviews with 10 family members regarding their perceptions of the clinical nurse specialists in intellectual disability. Data were audio-recorded, transcribed and analysed using Burnard's framework. Ethical approval was gained and access granted by service providers. The study highlights that intellectual disability clinical nurse specialists contribute and support care deliver across a range of areas, including personal caring, supporting and empowering families, liaison, education and leadership. Clinical nurse specialists have an important role and contribution in supporting families and clients, and Ireland is in a unique position to develop knowledge regarding specialist care for people with intellectual disability that can be shared nationally and internationally. Ireland is in a unique position to develop knowledge regarding specialist care for people with intellectual disability that can be shared and adapted by other healthcare professionals in other countries that do not have a specialised intellectual disability nurses. © 2017 John Wiley & Sons Ltd.

  10. Is Celiac Disease an Etiological Factor in Children with Nonsyndromic Intellectual Disability?

    Science.gov (United States)

    Sezer, Taner; Balcı, Oya; Özçay, Figen; Bayraktar, Nilufer; Alehan, Füsun

    2016-03-01

    To determine the prevalence of celiac disease in children and adolescents with nonsyndromic intellectual disability, we investigated serum levels of tissue transglutaminase antibody and total IgA from 232 children with nonsyndromic intellectual disability and in a healthy control group of 239 children. Study participants who were positive for tissue transglutaminase antibody underwent a duodenal biopsy. A total of 3 patients in the nonsyndromic intellectual disability group (5.45%) and 1 in the control group (0.41%) had positive serum tissue transglutaminase antibody (P > .05). Duodenal biopsy confirmed celiac disease in only 1 patient who had nonsyndromic intellectual disability. In this present study, children with nonsyndromic intellectual disability did not exhibit a higher celiac disease prevalence rate compared with healthy controls. Therefore, we suggest that screening test for celiac disease should not be necessary as a part of the management of mild and moderate nonsyndromic intellectual disability. However, cases of severe nonsyndromic intellectual disability could be examined for celiac disease. © The Author(s) 2015.

  11. Sibling relationships in adults who have siblings with or without intellectual disabilities.

    Science.gov (United States)

    Doody, Mairéad A; Hastings, Richard P; O'Neill, Sarah; Grey, Ian M

    2010-01-01

    There is relatively little research on the relationships between adults with intellectual disability and their siblings, despite the potential importance of these relationships for either individual's psychological well-being and future care roles that might be adopted by adult siblings. In the present study, sibling relationships of adults with adult siblings with (N=63) and without (N=123) intellectual disability were explored. Contact, warmth, conflict, and rivalry were measured using questionnaires available as an on-line survey. Expressed emotion was measured using the Five Minute Speech Sample over the telephone to establish an independently coded measure of criticism from the participant towards their sibling. Overall, there were few group differences in contact and sibling relationship. There was less telephone contact in the intellectual disability group, and less reported warmth in the relationship with siblings with intellectual disability although this was mainly associated with severe/profound intellectual disability. Exploratory analyses were conducted of the correlates of sibling relationships in both the intellectual disability and control groups. These analyses revealed a small number of different associations especially for conflict, which was lower when either the participant or sibling was younger in the control group but associated with relative age in the intellectual disability group.

  12. Intellectual disability health content within nursing curriculum: An audit of what our future nurses are taught.

    Science.gov (United States)

    Trollor, Julian N; Eagleson, Claire; Turner, Beth; Salomon, Carmela; Cashin, Andrew; Iacono, Teresa; Goddard, Linda; Lennox, Nicholas

    2016-10-01

    Individuals with intellectual disability experience chronic and complex health issues, but face considerable barriers to healthcare. One such barrier is inadequate education of healthcare professionals. To establish the quantity and nature of intellectual disability content offered within Australian nursing degree curricula. A two-phase national audit of nursing curriculum content was conducted using an interview and online survey. Australian nursing schools offering pre-registration courses. Pre-registration course coordinators from 31 universities completed the Phase 1 interview on course structure. Unit coordinators and teaching staff from 15 universities in which intellectual disability content was identified completed the Phase 2 online survey. Quantity of compulsory and elective intellectual disability content offered (units and teaching time) and the nature of the content (broad categories, specific topics, and inclusive teaching) were audited using an online survey. Over half (52%) of the schools offered no intellectual disability content. For units of study that contained some auditable intellectual disability content, the area was taught on average for 3.6h per unit of study. Units were evenly distributed across the three years of study. Just three participating schools offered 50% of all units audited. Clinical assessment skills, and ethics and legal issues were most frequently taught, while human rights issues and preventative health were poorly represented. Only one nursing school involved a person with intellectual disability in content development or delivery. Despite significant unmet health needs of people with intellectual disability, there is considerable variability in the teaching of key intellectual disability content, with many gaps evident. Equipping nursing students with skills in this area is vital to building workforce capacity. Crown Copyright © 2016. Published by Elsevier Ltd. All rights reserved.

  13. Supporting primary healthcare professionals to care for people with intellectual disability: a research agenda.

    Science.gov (United States)

    Lennox, Nicholas; Van Driel, Mieke L; van Dooren, Kate

    2015-01-01

    The vast health inequities experienced by people with intellectual disability remain indisputable. Persistent and contemporary challenges exist for primary healthcare providers and researchers working to contribute to improvements to the health and well-being of people with intellectual disability. Over two decades after the only review of supports for primary healthcare providers was published, this paper contributes to an evolving research agenda that aims to make meaningful gains in health-related outcomes for this group. The present authors updated the existing review by searching the international literature for developments and evaluations of multinational models of care. Based on our review, we present three strategies to support primary healthcare providers: (i) effectively using what we know, (ii) considering other strategies that offer support to primary healthcare professionals and (iii) researching primary health care at the system level. Strengthening primary care by supporting equitable provision of health-related care for people with intellectual disability is a much needed step towards improving health outcomes among people with intellectual disability. More descriptive quantitative and qualitative research, as well as intervention-based research underpinned by rigorous mixed-methods evaluating these strategies at the primary care level, which is sensitive to the needs of people with intellectual disability will assist primary care providers to provide better care and achieve better health outcomes. Many people with intellectual disability have poor health. The authors reviewed what has been written by other researchers about how to improve the health of people with intellectual disability. In the future, people who support adults with intellectual disability should continue doing what they do well, think of other ways to improve health, and do more research about health. At all times, the needs of people with intellectual disability should be the

  14. What’s the Harm? Harms in Research with Adults with Intellectual Disability

    Science.gov (United States)

    McDonald, Katherine E.; Conroy, Nicole E.; Olick, Robert S.

    2017-01-01

    Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability. PMID:28095059

  15. Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability.

    Science.gov (United States)

    McDonald, Katherine E; Conroy, Nicole E; Kim, Carolyn I; LoBraico, Emily J; Prather, Ellis M; Olick, Robert S

    2016-12-01

    Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public's views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.

  16. Non-verbal communication between nurses and people with an intellectual disability: a review of the literature.

    Science.gov (United States)

    Martin, Anne-Marie; O'Connor-Fenelon, Maureen; Lyons, Rosemary

    2010-12-01

    This article critically synthesizes current literature regarding communication between nurses and people with an intellectual disability who communicate non-verbally. The unique context of communication between the intellectual disability nurse and people with intellectual disability and the review aims and strategies are outlined. Communication as a concept is explored in depth. Communication between the intellectual disability nurse and the person with an intellectual disability is then comprehensively examined in light of existing literature. Issues including knowledge of the person with intellectual disability, mismatch of communication ability, and knowledge of communication arose as predominant themes. A critical review of the importance of communication in nursing practice follows. The paucity of literature relating to intellectual disability nursing and non-verbal communication clearly indicates a need for research.

  17. Beyond Specialist Programmes: A Study of the Needs of Offenders with Intellectual Disability Requiring Psychiatric Attention

    Science.gov (United States)

    Glaser, W.; Florio, D.

    2004-01-01

    Despite the increased prevalence of psychiatric disorder amongst offenders with an intellectual disability (ID), there is very little known about the characteristics and needs of those with dual disability. A study of admissions to a new community forensic dual disability clinic during the first 10 months of its operation. Typically, the offenders…

  18. Sex Offenders with Intellectual Disabilities and Their Academic Observers: Popular Methodologies and Research Interests

    Science.gov (United States)

    Hollomotz, A.

    2014-01-01

    Background: Over the past two decades, disability activists and scholars have developed research paradigms that aim to place (some of the) control over the research process in the hands of disabled people. This paper discusses the appropriateness of applying such paradigms to sex offenders with intellectual disabilities (ID). It exposes to what…

  19. Alleviating Parenting Stress in Parents with Intellectual Disabilities : A Randomized Controlled Trial of a Video-feedback Intervention to Promote Positive Parenting

    NARCIS (Netherlands)

    Hodes, Marja W.; Meppelder, Marieke; de Moor, Marleen; Kef, Sabina; Schuengel, Carlo

    2017-01-01

    Background: Adapted parenting support may alleviate the high levels of parenting stress experienced by many parents with intellectual disabilities. Methods: Parents with mild intellectual disabilities or borderline intellectual functioning were randomized to experimental (n = 43) and control

  20. Dr. Tulp attends the soft machine: patient simulators, user involvement and intellectual disability.

    Science.gov (United States)

    McClimens, Alex; Lewis, Robin; Brewster, Jacqui

    2012-09-01

    Simulation as a way to teach clinical skills attracts much critical attention. Its benefits, however, might be significantly reduced when the simulation model used relies exclusively on patient simulators. This is particularly true if the intended patient population for students taught is characterized by intellectual disability. Learning to care for people with intellectual disability might be better supplemented when the simulation model used incorporates input from 'real' people. If these people themselves have intellectual disabilities then the verisimilitude of the simulation will be higher and the outcomes for learners and potential patients will also be improved.

  1. Walk well: a randomised controlled trial of a walking intervention for adults with intellectual disabilities: study protocol

    Science.gov (United States)

    2013-01-01

    Background Walking interventions have been shown to have a positive impact on physical activity (PA) levels, health and wellbeing for adult and older adult populations. There has been very little work carried out to explore the effectiveness of walking interventions for adults with intellectual disabilities. This paper will provide details of the Walk Well intervention, designed for adults with intellectual disabilities, and a randomised controlled trial (RCT) to test its effectiveness. Methods/design This study will adopt a RCT design, with participants allocated to the walking intervention group or a waiting list control group. The intervention consists of three PA consultations (baseline, six weeks and 12 weeks) and an individualised 12 week walking programme. A range of measures will be completed by participants at baseline, post intervention (three months from baseline) and at follow up (three months post intervention and six months from baseline). All outcome measures will be collected by a researcher who will be blinded to the study groups. The primary outcome will be steps walked per day, measured using accelerometers. Secondary outcome measures will include time spent in PA per day (across various intensity levels), time spent in sedentary behaviour per day, quality of life, self-efficacy and anthropometric measures to monitor weight change. Discussion Since there are currently no published RCTs of walking interventions for adults with intellectual disabilities, this RCT will examine if a walking intervention can successfully increase PA, health and wellbeing of adults with intellectual disabilities. Trial registration ISRCTN: ISRCTN50494254 PMID:23816316

  2. The need to know: The information needs of parents of infants with an intellectual disability-a qualitative study.

    Science.gov (United States)

    Douglas, Tracy; Redley, Bernice; Ottmann, Goetz

    2017-11-01

    The aim of this study was to explore the information needs of parents of infants with an intellectual disability in the first year of life. Parents whose infant has an intellectual disability need access to information if they are to facilitate optimal care for their child. A lack of timely, accurate information provision by health professionals, particularly nurses and midwives, can increase parental stress and hinder access to the supports they and their infant require. A qualitative descriptive methodology was used for the study. Qualitative interviews were undertaken with parents of 11 children with intellectual disabilities in Victoria, Australia in 2014. Data were analysed using descriptive thematic analysis. Parents experienced challenges accessing quality information during the first year of their child's life. Parents required incremental information provision to build a strong knowledge base to facilitate optimal care for their infants. Three types of knowledge were identified as crucial for parents: knowledge about (1) the infant's condition; (2) the infant's specific needs and (3) available supports and services. Health professionals were the key resource to access this information. Health professionals' responsibilities include providing relevant, timely information to parents of infants with intellectual disabilities. This study conceptualises three types of information parents need to develop a strong knowledge base to guide their infant's care and provides guidance concerning the optimal timing for the delivery of information. © 2017 John Wiley & Sons Ltd.

  3. Motor Deficits of Girls with Down Syndrome in Comparing with Girls with Intellectual Disability in the School Ages Children

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    Tahereh Daftari-Anbardan

    2014-03-01

    Full Text Available Objective: Motor function in children with Down syndrome is similar to mentally retarded children. But the movements are slower and have lower quality. The purpose of this study was to identify weaknesses in motor function in children with Down syndrome, by using Bruininks Oseretsky Test of Motor Proficiency (BOTMP. Materials & Methods: In this cross-sectional study, thirty six children with intellectual disability, 18 girls with Down syndrome and 18 girls without Down syndrome, with chronological aged 8-13 years were investigated. The subjects of Down syndrome were selected by available sampling. The subjects of intellectual disability were selected by simple random sampling. Two groups of participants were matched for chronological age and IQ level. The measurement was BOTMP. Statistical analysis was performed using the Mann-Whitney U rank sum test and t-test. Results: The children with Down syndrome scored significantly lower than the mentally retarded children in the areas of gross motor skill composite (P<0.014 balance (P<0.029, response time (P<0.034 and visual motor control (P<0.048, but the fine motor and overlay motor skill composite, and subtests of bilateral coordination, strength, upper limb coordination scores were no significantly different between two groups. Conclusion: Motor rehabilitation is appropriate for children with intellectual disability, especially for children with Down syndrome, in throughout their adolescence. Key words: Motor skill/ Intellectual Disability/ Down syndrome/ BOTMP

  4. Inclusion in political and public life: the experiences of people with intellectual disability on government disability advisory bodies in Australia.

    Science.gov (United States)

    Frawley, Patsie; Bigby, Christine

    2011-03-01

    Civil and political participation lies at the core of citizenship. Increasingly, people with intellectual disability are members of disability advisory bodies. This study investigated the political orientations of advisory body members with intellectual disability, their participatory experiences, and the types of support they received. The 9 people with intellectual disability who in 2005 were members of disability advisory bodies at a state, national, and Victorian local government level were interviewed, together with 12 other members or secretariat staff of these bodies. Observations were also conducted of advisory body meetings. The political perspective of members with intellectual disability varied, but all had a background in self-advocacy. They found the work hard but rewarding and encountered both practical and intangible obstacles to participation. Members received varying types of practical support, but a supportive collegial milieu was characteristic among members who felt most confident about their participation. The milieu, structures, and processes of advisory bodies must all be adjusted to accommodate people with intellectual disability if they are to participate meaningfully.

  5. Treatments for the challenging behaviours of adults with intellectual disabilities.

    Science.gov (United States)

    Matson, Johnny L; Neal, Daniene; Kozlowski, Alison M

    2012-10-01

    To provide an overview and critical assessment of common problems and best evidence practice in treatments for the challenging behaviours (CBs) of adults with intellectual disabilities (IDs). Commonly observed problems that present obstacles to successful treatment plans are discussed, followed by an analysis of available research on the efficacy of behavioural and pharmacological therapies. Behavioural and pharmacological interventions are most commonly used when addressing CBs in people with IDs. However, within each of these techniques, there are methods that have support in the literature for efficacy and those that do not. As clinicians, it is important to follow research so that we are engaging in best practices when developing treatment plans for CBs. One of the most consuming issues for psychiatrists and other mental health professionals who work with people who evince developmental disabilities, such as IDs, are CBs. These problems are very dangerous and are a major impediment to independent, less restrictive living. However, there is a major gap between what researchers show is effective and much of what occurs in real-world settings.

  6. Social inclusion of individuals with intellectual disabilities in the military.

    Science.gov (United States)

    Werner, Shirli; Hochman, Yael

    2017-06-01

    Despite policies advocating the social inclusion of persons with disabilities in all settings that are a part of everyday life within society, individuals with intellectual disabilities (ID) are usually excluded from service in the military. This study examined the meaning of service in the military for individuals with ID from the perspective of various stakeholder groups. Semi-structured qualitative interviews were conducted with 31 individuals with ID, 36 relatives, and 28 commanders. The recent model for social inclusion developed by Simplican et al. (2015) served as the basis for analyses. Findings suggest a successful social inclusion process for individuals with ID, which resulted in them feeling as an integral part and as contributing members of the military unit and of society at large. Social inclusion in the military was described with reference to two overlapping and interacting domains of interpersonal relationships and community participation. The interaction between interpersonal relationships within the military and community participation has led to positive outcomes for soldiers with ID. Recommendations are provided for the continued inclusion of individuals with ID in the military and in other everyday settings. Copyright © 2017 Elsevier Ltd. All rights reserved.

  7. Minor Neurological Dysfunctions (MNDs in Autistic Children without Intellectual Disability

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    Gabriele Tripi

    2018-04-01

    Full Text Available Background: Children with autism spectrum disorder (ASD require neurological evaluation to detect sensory-motor impairment. This will improve understanding of brain function in children with ASD, in terms of minor neurological dysfunctions (MNDs. Methods: We compared 32 ASD children without intellectual disability (IQ ≥ 70 with 32 healthy controls. A standardized and age-specific neurological examination according to Touwen was used to detect the presence of MNDs. Particular attention was paid to severity and type of MNDs. Results: Children with ASD had significantly higher rates of MNDs compared to controls (96.9% versus 15.6%: 81.3% had simple MNDs (p < 0.0001 and 15.6% had complex MNDs (p = 0.053. The prevalence of MNDs in the ASD group was significantly higher (p < 0.0001 than controls. With respect to specific types of MNDs, children with ASD showed a wide range of fine manipulative disability, sensory deficits and choreiform dyskinesia. We also found an excess of associated movements and anomalies in coordination and balance. Conclusions: Results replicate previous findings which found delays in sensory-motor behavior in ASD pointing towards a role for prenatal, natal and neonatal risk factors in the neurodevelopmental theory of autism.

  8. Validation of intellectual disability coding through hospital morbidity records using an intellectual disability population-based database in Western Australia.

    Science.gov (United States)

    Bourke, Jenny; Wong, Kingsley; Leonard, Helen

    2018-01-23

    To investigate how well intellectual disability (ID) can be ascertained using hospital morbidity data compared with a population-based data source. All children born in 1983-2010 with a hospital admission in the Western Australian Hospital Morbidity Data System (HMDS) were linked with the Western Australian Intellectual Disability Exploring Answers (IDEA) database. The International Classification of Diseases hospital codes consistent with ID were also identified. The characteristics of those children identified with ID through either or both sources were investigated. Of the 488 905 individuals in the study, 10 218 (2.1%) were identified with ID in either IDEA or HMDS with 1435 (14.0%) individuals identified in both databases, 8305 (81.3%) unique to the IDEA database and 478 (4.7%) unique to the HMDS dataset only. Of those unique to the HMDS dataset, about a quarter (n=124) had died before 1 year of age and most of these (75%) before 1 month. Children with ID who were also coded as such in the HMDS data were more likely to be aged under 1 year, female, non-Aboriginal and have a severe level of ID, compared with those not coded in the HMDS data. The sensitivity of using HMDS to identify ID was 14.7%, whereas the specificity was much higher at 99.9%. Hospital morbidity data are not a reliable source for identifying ID within a population, and epidemiological researchers need to take these findings into account in their study design. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  9. Calidad de vida relacionada con la salud en personas con discapacidad intelectual en España Health-related quality of life among people with intellectual disabilities in Spain

    Directory of Open Access Journals (Sweden)

    José Antonio Mirón Canelo

    2008-11-01

    y los programas en marcha.OBJECTIVE: To measure health-related quality-of-life (HRQL among people with intellectual disabilities in the province of Salamanca, Spain. METHODS: A population-based, cross-sectional descriptive study. The SF-36 Health Survey, adapted and validated for the Spanish population, was selected and administered to 265 people with intellectual disabilities in the province of Salamanca, Spain. Personal interviews were also conducted with the participants in the presence of their parents, tutors, or close family. Eight quality-of-life scales were explored: general health, physical functioning, role-physical, bodily pain, role-emotional, social functioning, vitality, and mental health, based on questions on sociodemographic and lifestyle variables, health services utilization, support needs, and health status and HRQL. RESULTS: Of the 265 people studied, 69.8% were men and 30.2% were women (median age: 35 years; minimum: 16; maximum: 72. The highest number of points pertained to role-physical and physical functioning (more than 85 points, and the lowest, to general health and vitality (less than 70 points. No significant differences were found between men and women for any of the eight components. The independent variables, age, family income, level of education, and support needs showed the greatest number of independent associations with the general health, physical functioning, and social functioning components. Of the participants, 41.5% indicated that they felt their health was good. CONCLUSIONS: The study participants perceived their HRQL to be good, especially on the role-physical and physical functioning scales. Additional studies should be designed to evaluate HRQL in people with different degrees of intellectual disability to further contribute to intervention efforts and health and social programs designed specifically for this population group and to evaluate the interventions and program already underway.

  10. Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities.

    Science.gov (United States)

    Burke, Meghan M; Taylor, Julie Lounds; Urbano, Richard; Hodapp, Robert M

    2012-01-01

    With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving expectations. Siblings expected to assume greater caregiving responsibility for their brother or sister with disabilities if they were female, had closer relationships with and lived closer to their brother or sister with intellectual and developmental disabilities, and were the lone sibling without a disability. Siblings who expected to assume higher levels of caregiving had parents who were currently more able to care for their brother or sister with disabilities. With a better understanding of who intends to fulfill future caregiving roles, support can be provided to these siblings.

  11. Doing Research Together: A Study on the Views of Advisors with Intellectual Disabilities and Non-Disabled Researchers Collaborating in Research.

    Science.gov (United States)

    Puyalto, Carol; Pallisera, Maria; Fullana, Judit; Vilà, Montserrat

    2016-03-01

    Despite an increase in inclusive studies in recent years, research on the views of the people with and without disabilities who have participated in these studies is scarce. The aim of this study was to explore the perceptions and views of advisors with intellectual disabilities and non-disabled researchers who collaborated together on a joint project to study transition to adulthood. Two questionnaires were devised, one for advisors and one for researchers; two focus groups were held with people with intellectual disabilities, three focus groups with researchers, and one focus group with all participants together. Thematic analysis was used for the data analysis. The advisors valued this experience as an opportunity to learn new skills, freely express themselves on matters that affect them, and engage in a socially valued activity. The researchers considered that the participation of people with intellectual disabilities contributed to improving the quality of the research. The study provides a better understanding of inclusive research processes by taking into account participants' views. © 2015 John Wiley & Sons Ltd.

  12. Indigenous Australians, Intellectual Disability and Incarceration: A Confluence of Rights Violations

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    Claire E. Brolan

    2018-02-01

    Full Text Available Abstract: This article reviews the health and wellbeing of Aboriginal and Torres Strait Islander Australians with intellectual disability in the Australian prison system through a human rights lens. There is an information gap on this group of Australian prisoners in the health and disability literature and the multi-disciplinary criminal law and human rights law literature. This article will consider the context of Indigenous imprisonment in Australia and examine the status of prisoner health in that country, as well as the status of the health and wellbeing of prisoners with intellectual disability. It will then specifically explore the health, wellbeing and impact of imprisonment on Indigenous Australians with intellectual disability, and highlight how intersectional rights deficits (including health and human rights deficits causally impact the ability of Indigenous Australians with intellectual disability to access due process, equal recognition and justice in the criminal justice and prison system. A central barrier to improving intersectional and discriminatory landscapes relating to health, human rights and justice for Indigenous Australian inmates with intellectual disability, and prisoners with intellectual disability more broadly in the Australian context, is the lack of sufficient governance and accountability mechanisms (including Indigenous-led mechanisms to enforce the operationalisation of consistent, transparent, culturally responsive, rights-based remedies.

  13. On self-identity: the process of inclusion of individuals with intellectual disabilities in the military.

    Science.gov (United States)

    Werner, Shirli; Hochman, Yael

    2018-02-23

    Identity development among individuals with disabilities may depend on their being included in central institutions in society. The centrality of the military in Israeli society makes it a highly important setting for inclusion and identity development. We examined the self-identity of young adults with intellectual disabilities who serve in the "Equal in Uniform" project. Forty-nine interviews were conducted with 31 individuals with intellectual disabilities. Findings showed that military service helped develop the identity of soldiers, which enhanced their self-efficacy. Participants described their participation in the military as an opportunity to take an active part in socially valued roles. Findings are discussed with reference to the effect of the project on the self-identity of individuals with intellectual disabilities. The meaning of successfully serving in socially valued roles for self-efficacy is discussed. Implications for rehabilitation Completing socially valued roles leads to greater self-efficacy, enhanced self-esteem and greater psychological well-being among individuals with intellectual disabilities. Inclusion of individuals with intellectual disabilities within a central community setting (specifically the military) allows them to deal with issues of identity development, as it does for other young people without intellectual disabilities. Receiving ongoing positive input from others for one's abilities and success is a conducive factor in positive identity formation.

  14. International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans.

    Science.gov (United States)

    Watchman, Karen; Janicki, Matthew P; Splaine, Michael; Larsen, Frode K; Gomiero, Tiziano; Lucchino, Ronald

    2017-06-01

    The World Health Organization (WHO) has called for the development and adoption of national plans or strategies to guide public policy and set goals for services, supports, and research related to dementia. It called for distinct populations to be included within national plans, including adults with intellectual disability (ID). Inclusion of this group is important as having Down's syndrome is a significant risk factor for early-onset dementia. Adults with other ID may have specific needs for dementia-related care that, if unmet, can lead to diminished quality of old age. An International Summit on Intellectual Disability and Dementia, held in Scotland, reviewed the inclusion of ID in national plans and recommended that inclusion goes beyond just description and relevance of ID. Reviews of national plans and reports on dementia show minimal consideration of ID and the challenges that carers face. The Summit recommended that persons with ID, as well as family carers, should be included in consultation processes, and greater advocacy is required from national organizations on behalf of families, with need for an infrastructure in health and social care that supports quality care for dementia.

  15. Differentiating characteristics of deafblindness and autism in people with congenital deafblindness and profound intellectual disability.

    Science.gov (United States)

    Hoevenaars-van den Boom, M A A; Antonissen, A C F M; Knoors, H; Vervloed, M P J

    2009-06-01

    In persons with deafblindness, it is hard to distinguish autism spectrum disorders from several deafblind specific behaviours caused by the dual sensory impairments, especially when these persons are also intellectually disabled. As a result, there is an over-diagnosis of autism in persons who are deafblind leading to unsuitable interventions. Autism as specified by the DSM-IV was studied in 10 persons with congenital deafblindness with profound intellectual disabilities. Behaviours of people with deafblindness and autism (n = 5) and of people with deafblindness without autism (n = 5) were observed in a semi-standardised assessment. All people with deafblindness showed impairments in social interaction, communication and language. In contrast to persons without autism, people with deafblindness and autism showed significantly more impairments in reciprocity of social interaction, quality of initiatives to contact and the use of adequate communicative signals and functions. No differences between the groups were found for quantity and persistence of stereotyped behaviour, quality of play and exploration and adequate problem-solving strategies. This study indicates that there are some possibilities to differentiate autism from behaviours specific for deafblindness. It also confirms the large overlap in overt behaviours between people with deafblindness and persons with autism.

  16. Complexities in the Provision of Respite Care to Family Carers of Persons with Intellectual Disabilities

    Directory of Open Access Journals (Sweden)

    Frieda Finlay

    2011-10-01

    Full Text Available PurposeRespite care is generally thought to benefit family carers of persons with intellectual disabilities and is regarded as an important component of family-centred services.  However, the complexities associated with the provision of such services, from the carer’s perspective, have been rarely investigated.MethodThis qualitative research study was carried out through a participatory action research process that involved collaboration among researchers and family members as co-researchers.  Seven focus groups, involving seventy family carers (fifty mothers, fifteen fathers and five sisters, were held in seven locations across the Republic of Ireland. ResultsThree main themes dominated the discussions.  The first theme related to the ambivalence of carers towards using respite services, as expressed in their reluctance to relinquish care-giving for even a short period; the feelings of guilt they experienced; and the greater needs of other carers.  The second theme related to the benefits of respite breaks, but these were solely with respect to the carer and other family members, rather than to the person with an intellectual disability.  The third theme regarding the quality of provision was dominated by concerns for the care the person received in using the services. ConclusionsRespite care has the potential to make a difference, and these findings call for building much- needed alliances between all members of the family and professionals.  This is in order to support one another through the difficulties associated with the redesign of existing respite provision, and the extension of these services to the growing number of carers who require respite breaks.doi 10.5463/DCID.v22i2.22Key wordsIntellectual disability, respite, family members, Ireland 

  17. Does visual impairment lead to additional disability in adults with intellectual disabilities? A cross-sectional study

    NARCIS (Netherlands)

    Evenhuis, H.M.; Sjoukes, L.; Koot, H.M.; Kooijman, A.C.

    2009-01-01

    Background: This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). Method: In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with

  18. The role of learning disability nurses in promoting cervical screening uptake in women with intellectual disabilities: A qualitative study.

    Science.gov (United States)

    Lloyd, Jennifer L; Coulson, Neil S

    2014-06-01

    Research suggests that the uptake of cervical screening by women with intellectual disabilities (commonly known as learning disabilities within UK policy frameworks, practice areas and health services) is poor compared to women without intellectual disabilities. The present study explored learning disability nurses' experiences of supporting women with intellectual disabilities to access cervical screening in order to examine their role in promoting attendance and elucidate potential barriers and facilitators to uptake. Ten participants recruited from a specialist learning disability service completed a semi-structured interview and data were analysed using experiential thematic analysis. Identified individual barriers included limited health literacy, negative attitudes and beliefs and competing demands; barriers attributed to primary care professionals included time pressures, limited exposure to people with intellectual disabilities and lack of appropriate knowledge, attitudes and skills. Attendance at cervical screening was facilitated by prolonged preparation work undertaken by learning disability nurses, helpful clinical behaviours in the primary care context and effective joint working. © The Author(s) 2014.

  19. Non-suicidal self-injury among children with hearing loss and intellectual disability.

    Science.gov (United States)

    Akram, Bushra; Tariq, Amina; Rafi, Zeeshan

    2017-10-01

    To find the prevalence and to identify the predictors of non-suicidal self-injury among school-going children.. This cross-sectional study was conducted at the University of Gujrat, Gujrat Pakistan, from September 2015 to October 2016, and comprised children with intellectual disability and hearing loss. Participants were recruited from schools for special children located in Gujranwala, Jhelum and Gujrat. Multistage stratified sampling technique was used. Of the 325 children, 178(50.4%) had intellectual disability and 175(49.6%) had hearing loss. Findings indicated that the prevalence of self-injurious behaviour was higher in children with intellectual disability 48(27%) compared to their counterparts with hearing loss 3(2%). Neural network, when administered on whole data set, indicated type of disability 0.474(100%), education/training 0.99(20.9%) and access of counselling 0.114(24%) as important predictors of non-suicidal self-injury in both groups. On the other hand, the degree of disability (hearing loss 0.42[100%]; intellectual disability 0.32[100%]), education/ training (hearing loss 0.18[43%]; intellectual disability 0.27[84.5%]) and access of counselling (hearing loss 0.175[41.8%]; intellectual disability 0.256[78.7%]) were important predictors of non-suicidal self-injury among the participants, when neural network was run on the split files on the basis of disability. The prevalence of non-suicidal self-injury among children with intellectual disability was higher as compared to those with hearing loss.

  20. Feasibility of bioelectrical impedance analysis in persons with severe intellectual and visual disabilities

    NARCIS (Netherlands)

    Havinga-Top, Thamar; Waninge, Aly; van der Schans, Cees; Jager, Harriët

    2015-01-01

    Background: Body composition measurements provide importanti nformation about physical fitness and nutritional status. People with severe intellectual and visual disabilities (SIVD) have an increased risk for altered body composition. Bioelectrical impedance analysis (BIA) has been evidenced as a