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Results for “Intellectual Disability”

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PubMed2005

Care staff attributions about challenging behaviors in adults with intellectual disabilities.

A number of researchers have explored the attributions that care staff make about challenging behavior. The expectation, based on behavioral and cognitive models, is that these attributions may help predict why staff inadvertently reinforce challenging behavior. Two studies of staff attributions about challenging behavior are reported. In the first, a high level of consistency in attributions across staff was found. In a second quasi-experimental study, staff made attributions about two known clients' behavior. Analysis of these data showed that attributions varied in a manner broadly consistent with the hypothesized functions of the behaviors. The weight of the evidence suggests that staff may be sensitive to the causes of challenging behavior. The practical implications of these data are discussed.

Adult↗

PubMed2004

Attitudes of American and Israeli staff toward people with intellectual disabilities.

We compared the inclusion-related attitudes of community agency staff in the United States and Israel. Samples of 147 (United States) and 74 (Israel) staff members were assessed with the Community Living Attitudes Scale (CLAS). Results showed that higher educational levels, regardless of nation, were associated with higher Empowerment scores, lower Exclusion scores, lower Sheltering scores, and higher Similarity scores. Empowerment attitudes were strongly related to differences in the agencies in which individuals were employed. Controlling for age, education, and agency, we found that staff in the United States had higher Empowerment scores than did Israeli staff. Israeli staff had higher Sheltering and Similarity scores and marginally higher Exclusion scores than did the United States staff.

Adult↗

PubMed2005

Multi-agency working in support of people with intellectual disabilities.

Although health and social services in Northern Ireland are jointly commissioned and delivered, the recent emphasis in government policy on multi-agency working for people with learning disabilities has not extended as yet to the region. A qualitative research study, with informants drawn from a range of sectors and agencies beyond health and social services, nonetheless identified at least 24 different organizations who were participating in some form of joint working. The benefits were seen to outweigh potential difficulties and respondents identified the factors that they had found facilitated joint working as well as the obstacles to it. These centred on the need to build relationships among participants, creating opportunities for partnership working to occur and increasing the capacity of individuals and organizations to work together. The need for further evaluation and research into system change and user involvement is highlighted.

Cooperative Behavior↗

PubMedDate not supplied

Prevention of intellectual disabilities: early interventions to improve cognitive development.

This paper presents a conceptual framework that has guided three randomized, controlled early intervention trials designed to improve cognitive development and social competence in high-risk young children from birth to 3 years of age. Two of the projects (Abecedarian and CARE) enrolled infants from economically and socially low-resource families and the other project (IHDP) was an eight-site randomized controlled trial with 985 low birth-weight and premature infants and their families. IHDP families varied widely in their economic and social resources. Results consistently indicated positive effects of the intervention on child IQ during the first 3 years of life. Children from the lowest resource families consistently benefited the most from the early intervention.

Child, Preschool↗

PubMed2004

The molecular basis of intellectual disability: novel genes with naturally occurring mutations causing altered gene expression in the brain.

This review on the genes implicated in mental retardation, and its X-chromosome linked forms, we presented at the symposium 'The Regulation of Gene Expression in the Brain' (January 23-26, 2003, Heron Island Australia). The main purpose of the review was to highlight the current knowledge of the spectrum of the genes causing mental retardation, provide an insight in to their function(s), where known, and to speculate about the evolutionary processes which shaped such an unexpected concentration of these genes on the human sex chromosome X. Such genes with naturally occurring mutations provide an invaluable opportunity for identifying the pathways essential for the normal function of the brain. Once identified, cellular and animal models can then be used for experimentation

Brain↗

PubMed2005

Long-term outcome for people with severe intellectual disabilities: impact of social impairment.

Results from a 25-year follow-up study of the Camberwell Cohort (L. Wing & Gould, 1978, 1979) were presented. Ninety-one people, ranging in age from 27 to 41 years, were traced, and an outcome measure was developed incorporating independent functioning, residential placement, employment, and quality of life. Outcome was rated as either poor (53%) or fair (43%), with only 3% having a good outcome. Using logistic regression methods, we found that the best predictor of outcome was social impairment, with those who were socially impaired, particularly those in the aloof category, having a poorer outcome. Higher IQ at Time 1 and lower challenging behavior were also predictive of better outcome. An in-depth look at social impairment revealed that social impairment remained stable over time.

Adaptation, Psychological↗

PubMed2024

Recurrent ATP1A1 variant Gly903Arg causes developmental delay, intellectual disability, and autism.

ATP1A1 encodes a sodium-potassium ATPase that has been linked to several neurological diseases. Using exome and genome sequencing, we identified the heterozygous ATP1A1 variant NM_000701.8: c.2707G>A;p.(Gly903Arg) in two unrelated children presenting with delayed motor and speech development and autism. While absent in controls, the variant occurred de novo in one proband and co-segregated in two affected half-siblings, with mosaicism in the healthy mother. Using a specific ouabain resistance assay in mutant transfected HEK cells, we found significantly reduced cell viability. Demonstrating loss of ATPase function, we conclude that this novel variant is pathogenic, expanding the phenotype spectrum of ATP1A1.

Child↗

PubMed2006

Survey on dysfunctional eating behavior in adult persons with intellectual disability living in the community.

Prevalence of dysfunctional eating behavior was investigated in 311 adult persons with mental retardation living in the West Coast of Norway. Reports from a questionnaire filled out by health workers were used as observational data. The main finding was that 64.3% of the clients showed indices of dysfunctional eating behavior. The five most frequent dysfunctional behaviors was eating to fast (27.7%) followed by bolting one's food (25.1%), refusal of food (19.9%), excessive eating (18.3%) and non co-operative during mealtime (17.0%). In 50% of the cases, one or more eating dysfunction was present every day and the intensity of the behavior was regarded as high or very high in 26.2% of the cases. It is suggested that more studies are needed to single out treatment approaches to eating dysfunction's in adult persons as has been done on food refusal in children.

Adult↗

PubMed2006

Cardiac diseases in people with intellectual disability.

BACKGROUND: In people with ID there is more morbidity than in the general population, including cardiac diseases. Dutch figures on this subject are scarce. METHODS: Descriptive study of the prevalence of cardiac diseases in 436 residential clients in Echt, the Netherlands, and comparisons between men and women, age groups, and level and aetiology of ID, were carried out. RESULTS: It was found that the total prevalence of cardiac diseases was 14%, with a higher prevalence among women, the elderly, and people with mild/moderate ID. CONCLUSIONS: The prevalence of cardiac diseases in residential clients is substantial. With the increasing number of ageing people with ID and people with ID living more independently in community-integrated residences, it is expected that the morbidity and mortality from cardiac diseases will increase further.

Adult↗

PubMed1999

Communications between staff and adults with intellectual disabilities in naturally occurring settings.

Videotapes were made of 43 staff-client dyads in small-scale residential and day service settings. Frequency counts were made of carers' communicative acts, and two experienced speech and language therapists rated these for appropriateness. Recommendations for enhancing communication were also noted. The results showed that clients were presented with few opportunities to engage as equal partners in the conversational interchanges: staff overly relied on verbal acts, even when they were communicating with predominantly non-verbal clients; they tended to favour the use of directives and questions, and the majority of staff failed to adjust their language to the client's level of understanding. The most commonly recommended changes for staff were to use simpler sentences and words, to increase their use of non-verbal signals and open questions, to provide more opportunities for clients to initiate topics, and to increase their responsiveness to client's non-verbal signals. The explanations for staff behaviour are reviewed and the implications for changing practice are discussed.

Adolescent↗

PubMed2001

Psychopathology of sexual abuse in young people with intellectual disability.

The present study addressed two issues using a sample of child and adolescent victims and perpetrators of sexual abuse: (1) the extent of post-traumatic stress disorder (PTSD) in the sample; and (2) the possible distinction between perpetrators whose motivations were sexually impulsive, and those who were controlling and abuse-reactive. Retrospective case material from 43 cases (21 victims only, and 22 perpetrators, of whom 16 were also victims) provided the data. Post-traumatic symptomatology was not common. Only one case of PTSD was found. Perpetrators could be distinguished by whether they had suffered sexual abuse alone, sexual and physical abuse, or neither. The proposed distinction between perpetrators received support. Sexual abuse directed at younger victims was associated with earlier experience of multiple forms of abuse. The present data does not support the view that post-traumatic symptoms following victimization are a mediator of sexual abuse perpetration. It is argued that an elaboration of the Williams & New developmental model of perpetration better fits the data.

Adolescent↗

PubMed2002

Measuring staff support in services for people with intellectual disability: the Staff Support and Satisfaction Questionnaire, Version 2.

Social support is an important determinant of well-being, including the stress experienced within the work setting. The present paper reports on the development of the Staff Support and Satisfaction Questionnaire (3SQ), from a previously published measure: the Staff Support Questionnaire. The 3SQ was piloted with 21 health professionals and examined for evidence of test-retest reliability with 24 staff. Data on internal reliability were collected on three occasions from a total sample of 177 staff. The validity of the 3SQ was examined in four studies with a total of 238 staff by testing it against validated measures of psychological well-being. The data showed that the total scale had a high level of test--retest reliability (rs=0.82, P < 0.001) and consistently high internal reliability. Three out of the four validity studies showed statistically significant inverse relationships between the total scale and measures of psychological well-being. The weakest link was the 'Supportive People' subscale. The reliability and validity studies suggest that the psychometric properties of the 3SQ are generally robust, except for the 'Supportive People' subscale, which should be interpreted with caution.

Adult↗

PubMedDate not supplied

Evaluation of a long-term oral health program by carers of children and adults with intellectual disabilities.

The oral health program presented here was undertaken in three French centers for persons with special needs. The program aimed to educate the carers about dental disease, to motivate them with regard to prevention, and to improve the oral hygiene and oral health of the residents. This study evaluated the impact of the program in terms of change in attitudes and behavior expressed by the carers by means of a questionnaire. Following demonstration of oral hygiene techniques on an individual basis, the number of residents who had their teeth cleaned more than once a day rose from 24% to 52% (p < 0.05). The percentage of carers able to clean both posterior and anterior teeth of their key residents increased from 24% to 60% (p < 0.05), and the percentage finding tooth cleaning easy increased from 36% to 60% (non-significant). The intervention was thus deemed moderately successful, although the carers continued to take better care of their own oral health than that of the residents. The need for ongoing training is emphasized, both for the carers of those with special needs and for the dental profession. The lack of a validated means of measuring the impact of such interventions on care providers for this population is discussed.

Adult↗

PubMed2001

Experiences of staff in dealing with client sexuality in services for teenagers and adults with intellectual disability.

Previous studies have focused on staff attitudes to sexuality rather than their experience of dealing with sexual incidents. A self-completion questionnaire was devised in which seven scenarios were proposed relating to client sexuality (e.g. public masturbation and accusation of sexual abuse). Staff noted whether or not they had encountered this type of incident, and if so, how confident they felt (or would feel) in dealing with it, and whether or not they would enlist the help of colleagues. Questionnaires were sent to all statutory, voluntary and private service providers (including schools) within one community health and social services trust area in Northern Ireland, and 150 staff responded. Around two-thirds of staff reported having dealt with at least one of the seven incidents listed. Staff with previous experience of the incident listed, felt that they could deal with it more confidently in future, as did staff working in residential services rather than day services. The latter group of staff were more likely to enlist the help of colleagues than were residential staff. Nearly 50% of staff identified more training and clear policy guidelines as the two means of increasing their confidence in dealing with issues of client sexuality. These results highlight the need for staff training that spans agencies and results in common approaches to client sexuality. Suggestions for further research are noted.

Adolescent↗

PubMed2006

A cascade of disparities: health and health care access for people with intellectual disabilities.

People with ID represent approximately 2% of the population and, as a group, experience poorer health than the general population. This article presents recent conceptualizations that begin to disentangle health from disability, summarizes the literature from 1999 to 2005 in terms of the cascade of disparities, reviews intervention issues and promising practices, and provides recommendations for future action and research. The reconceptualization of health and disability examines health disparity in terms of the determinants of health (genetic, social circumstances, environment, individual behaviors, health care access) and types of health conditions (associated, comorbid, secondary). The literature is summarized in terms of a cascade of disparities experienced by people with ID, including a higher prevalence of adverse conditions, inadequate attention to care needs, inadequate focus on health promotion, and inadequate access to quality health care services. Promising practices are reviewed from the perspective of persons with ID, providers of care and services, and policies that influence systems of care. Recommendations across multiple countries and organizations are synthesized as guidelines to direct future action. They call for promoting principles of early identification, inclusion, and self-determination of people with ID; reducing the occurrence and impact of associated, comorbid, and secondary conditions; empowering caregivers and family members; promoting healthy behaviors in people with ID; and ensuring equitable access to quality health care by people with ID. Their broadscale implementations would begin to reduce the health disparity experienced by people with ID.

Cross-Cultural Comparison↗

PubMed1998

Benzodiazepines in the treatment of epilepsy in people with intellectual disability.

All the benzodiazepines (BZDs) in clinical use have the capacity to promote the binding of the major inhibitory neurotransmitter, gamma-amino-butyric acid (GABA), to sub-types of GABA receptors which exist as multi-subunit ligand-gated chloride channels. Thus, the BZDs facilitate the actions of GABA in the brain. The BZDs in use as antiepileptic drugs are diazepam, clonazepam, clobazam, nitrazepam, and lately, also lorazepam and midazolam as emergency therapy. The BZDs have a wide-spectrum of proven clinical efficacy in the prevention of different kind of seizures. Clonazepam and clobazam, as well as nitrazepam in some cases, can be useful as an adjunct treatment in refractory epilepsies. However, the clinical use of BZDs for the prophylactic treatment of epilepsy is associated with two major problems which have limited the long-term use of these drugs: the potential for side-effects, especially sedative effects, and the high risk of development of tolerance. Despite the limitations of BZDs in the prophylactic treatment of epilepsies, these drugs play a prominent role in clinical practice in the emergency management of acute seizures and status epilepticus. Diazepam, clonazepam and lorazepam are all considered first-line agents in the emergency management of acute seizures and status epilepticus. Furthermore, the value of midazolam as an emergency therapy in epilepsy has been increasingly recognized in recent years.

Adult↗

PubMed2005

Knowing you: the interpersonal perceptions of staff towards aggressive individuals with mild to moderate intellectual disabilities in situations of conflict.

OBJECTIVES: Staff attributions concerning challenging behaviour have been found to play a role in determining their responses. The emphasis in the literature has been on staff beliefs about the challenging behaviour itself. However, staff are also likely to be responding to the person engaging in the behaviour. The aim of this study was to explore workers' perceptions of individuals who are frequently aggressive. DESIGN AND METHODS: Thirty-six staff members working with individuals presenting problems of frequent aggression participated in this study. They were interviewed about an incident of aggression involving the person they worked with. The semi-structured interview, based on a Rational Emotive Therapy format, aimed to tap into the emotions aroused in the staff members and interpersonal appraisals that they made at the time of the incident. The responses were content analyzed. RESULTS: The strength of the staff member's emotional reactions were noteworthy. Furthermore, approximately half of the staff members believed that the clients' aggression was directed at them personally. In turn, the majority of staff members described their clients in negative terms, and said that their first impulse had been to confront the clients. CONCLUSIONS: The findings suggest that interpersonal perceptions may have a role in determining staff responses to individuals who behave aggressively. The clinical and theoretical implications of the findings were discussed, alongside directions for future research.

Adult↗

PubMed2000

Olanzapine for chronic, stereotypic self-injurious behaviour: a pilot study in seven adults with intellectual disability.

Dopamine one (D1) receptor supersensitvity in the corpus striatum is said to be the primary mechanism within the dopamine model proposed for chronic, refractory self-injurious behaviour (SIB), which may explain why conventional neuroleptics have proven largely ineffective. In common with other atypical antipsychotic agents, olanzapine has more affinity for the D1 receptor. The present study explored whether olanzapine could reduce rates of the stereotypic form of chronic SIB, a subtype where dopamine dysfunction is the most likely underlying mechanism. A clinical sample of seven patients with various levels of learning disability who displayed features of stereotypic SIB were assessed over a 6-week period of baseline measurement and a 15-week treatment phase during which olanzapine was added to existing medication. Both SIB and other aberrant behaviours were measured by daily nurse rating and the Self-Injury Trauma Scale (SITS). All measurements were unblind. Doses ranged from 5 to 15 mg. Out of the seven subjects, three showed a clear improvement, one showed a marginal improvement, one deteriorated, and the data was equivocal for the remaining two individuals. The means of the SITS Number and Severity Indices (NI and SI, respectively) reduced significantly from baseline during both the 5- and 10-mg treatment phases, and taking treatment as a whole, by 53% and 48%, respectively (NI: mean = 0.7 units reduction, P = 0.02; SI: mean = 0.9 units reduction, P = 0.04). The risk index also reduced, but did not reach significance. A modest reduction in mean nurse-rated SIB was not significant for either phase or for treatment as a whole. At doses above 5mg, mean scores deteriorated on balance, although two responders showed a marginal additional improvement. Olanzapine was well tolerated with one adverse event reported (somnolence) which was mild and transient. The present pilot study suggests that olanzapine can reduce stereotypic SIB. A larger trial is indicated.

Adult↗