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[Assessment of behavioral problems in children with intellectual disability: the Nisonger Child Behavior Rating Form].

Epidemiological data show a high prevalence of emotional and behavioral problems in children with intellectual disability. However there is a lack of standardized instruments designed to assess emotions and behaviors typically seen in mentally handicapped children. The results of a survey using the "Nisonger Child Behavior Rating Form" are presented. Reliability coefficients, concordance of parent and teacher ratings, convergent and differential validity data are satisfactory to suggest its clinical use to identify problem areas which deserve special attention in the mental health care of children with intellectual disability.

Adolescent↗

PubMed2006

A test of counterfeit deviance: a comparison of sexual knowledge in groups of sex offenders with intellectual disability and controls.

Several authors have suggested that lack of sexual knowledge is a primary reason for inappropriate sexual behaviour in men with intellectual disabilities. This hypothesis, counterfeit deviance, is tested in the current report with two separate cohorts comparing sex offenders and controls, both with intellectual disability. The Socio-Sexual Knowledge and Attitudes Test was completed on all participants and any significant differences between groups indicated that the sex offender cohort had a higher level of knowledge. The hypothesis has not been supported. In addition, a positive relationship was found between intellectual ability and knowledge for the control cohort but not for the sex offender cohort.

Adult↗

PubMed2000

Behavioural and emotional difficulties in students attending schools for children and adolescents with severe intellectual disability.

BACKGROUND: For several decades, researchers and clinicians have been aware of an increased prevalence of psychiatric disorder in children with intellectual disability. However, there are few research studies exploring this issue. METHODS: The parents of 123 children attending schools for children with 'severe learning difficulties' completed the Developmental Behaviour Checklist (DBC) in order to identify those children with clinically significant behavioural and emotional problems. Comparisons were made with norms for the DBC and a range of child variables were investigated as possible correlates of disorder. RESULTS: Some 50.4% of the children scored above the cut-off on the DBC for psychiatric disorder. The child's severity of physical disability was related most strongly to parental ratings of behavioural and emotional problems. There were also effects for the child's age and the absence of Down's syndrome. CONCLUSIONS: The present study confirms previous research findings of a high prevalence of behavioural and emotional difficulties amongst children with intellectual disability, and identifies a number of correlates of disorder which require further investigation.

Adolescent↗

PubMed2000

Gastroesophageal reflux disease in intellectually disabled individuals: how often, how serious, how manageable?

Gastroesophageal reflux disease (GERD) is an important and frequently occurring problem among intellectually disabled individuals (IDI). Early suspicion and recognition of the presence of GERD in IDI is the cornerstone of adequate management of these patients. The prevalence of GERD among institutionalized IDI with an IQ < 50 is about 50%, with 70% of these reflux patients having endoscopically established reflux esophagitis. In case of symptoms as hematemesis, rumination, or dental erosions, there is an increased risk for GERD. GERD has also been shown to be associated with cerebral palsy, an IQ < 35, scoliosis, and the use of anticonvulsant drugs or benzodiazepines. To establish the diagnosis, 24-h pH measurement or endoscopy should be used in all those intellectually disabled individuals in whom GERD clinically is suspected. The efficacy of proton-pump inhibitors (PPIs) in IDI with GERD is indisputable. In IDI, adults as well as children, PPIs are highly effective, independent of the severity of esophagitis. Marked improvement of symptoms and quality of life can be noticed after medical treatment, thereby decreasing the need for surgery in this complicated group of patients.

Barrett Esophagus↗

PubMed2000

Working in the public and private domains: staff management of community activities for and the identities of people with intellectual disability.

In addition to describing how the concept of stigma continues to be a pervasive influence in encounters between people with intellectual disability and others, the present study suggests that the management of this situation has passed into the control of care staff. An ethnographic study of young adults and community relationships suggests that the activities of staff are crucial in shaping the social profile of people with intellectual disability. The views of care staff about the taken-for-granted rights which characterize presence and participation in the community domain encourage them to adopt a semi-insulation approach to their work. Staff extend this approach by adopting information control strategies to conceal important information from students. The present author argues that there is a need for on-going research into staff activity in the community domain.

Adult↗

PubMed2004

Life events and psychiatric symptoms in adults with intellectual disabilities.

BACKGROUND: Previous research has indicated that children and adults with intellectual disabilities (ID) may respond to traumatic and other life events in a similar way to the general population. However, few studies have charted the extent of exposure to recent life events in samples of adults with ID and the association of such exposure with general psychiatric problems. METHODS: Adults with ID (n = 1155) in community and residential services in a county district in North-east England were assessed using the Psychiatric Assessment for Adults with Developmental Disabilities Checklist (PAS-ADD Checklist), which includes a checklist of recent life events. Data were provided by informants who knew the index client well. RESULTS: Within the 12 months before data collection, the five most frequently experienced life events were: moving residence (15.5% of sample), serious illness of close relative or friend (9.0%), serious problem with close friend, neighbour or relative (8.8%), serious illness or injury to self (8.5%), and death of close family friend or other relative (8.3%). Overall, 46.3% had experienced one or more significant life events in the previous 12 months and 17.4% had experienced two or more. Logistic regression analysis revealed that the presence of one or more life events in the previous 12 months added significantly to the classification of psychiatric caseness predicted by demographic variables (age, sex, residence in community or hospital) on the PAS-ADD Affective Disorder scale. Overall, the odds ratio for affective disorder given exposure to one or more life events was 2.23 [95% confidence interval (CI) = 1.56, 3.18]. CONCLUSIONS: Small, but potentially significant relationships were found between life events exposure and psychiatric problems in adults with ID. Further research is needed to explore the causal direction of this relationship and also to develop more sensitive measures of life events relevant to the situation of adults in residential and community service environments.

Adolescent↗

PubMed2005

Psychiatric inpatient admissions of adults with intellectual disabilities: predictive factors.

Information on admission to psychiatric inpatient units is lacking from the literature on contemporary services for people with intellectual disability and mental health needs. Here we report on predictors of admission for a cohort of 752 adults from this population living in community settings; 83 were admitted. We also report on two subsamples of this cohort for whom different psychometric measures concerned with psychiatric symptoms and behavior had been completed. Schizophrenia spectrum disorders and mild intellectual disabilities independently predicted admission for the total cohort. The presence of symptoms associated with psychosis and the presence of physical aggression predicted admission in the subsamples.

Adolescent↗

PubMed1994

The consistency of reports about feelings and emotions from people with intellectual disability.

Sixty-seven subjects with mild or moderate intellectual disability were assessed on a variety of measures of emotion. All of the measures were self-report measures and all of the data is based on reports by the subjects' themselves. The battery included the Zung Self-Rating Anxiety Scale, the Zung Depression Inventory, the General Health Questionnaire and the Eysenck-Withers Personality Test. The results reveal an impressive amount of convergent validity in the subjects' emotional systems.

Adult↗

PubMed2003

Prenatal genetic screening for intellectual disability.

BACKGROUND: This paper argues that the main ground for the moral justification of screening and termination of foetuses on grounds of intellectual disability stems from a conception of what it is to lead a good human life. METHOD: Having established this claim, three well-known philosophical theories of a good human life are briefly presented. CONCLUSION: In the light of consideration of these theories, it is proposed that life with intellectual disability is not necessarily incompatible with the conditions necessary for leading a good human life.

Female↗

PubMed2005

Further examination of relationships between life events and psychiatric symptoms in adults with intellectual disability.

BACKGROUND: It has been proposed that people with intellectual disability (ID) might be similar to the general population in the way they respond to significant life events. Some preliminary findings have demonstrated that adults with ID who have experienced recent life events have an increased probability of having psychiatric problems. The aims of the present study were to determine whether previous findings can be replicated, and to examine the influence of additional diagnoses associated with ID on the strength of relationships between life event frequency and psychiatric problems. METHODS: Adults with ID (n = 624), living either in staffed community accommodation or in family or foster homes, were assessed on the Developmental Behaviour Checklist for Adults (DBC-A) and a 37-item life events checklist. Carers who knew the person well acted as proxy informants. RESULTS: People living in staffed accommodation experienced more life events than people living with natural or foster families. Life event frequency predicted DBC-A total score, five of six sub-scale scores, and caseness status, after significant demographic factors were taken into account. However, the strength of correlations between life event frequency and DBC-A total score varied among sub-groups identified by type of developmental disability and level of ID. CONCLUSIONS: Weak but significant associations between emotional and behavioural problems and life events experienced by adults with ID were demonstrated, but it was also shown that the strength of such associations varies among sub-groups of this heterogeneous population. Future research needs to take account of the circumstances surrounding the life changes, the period of time over which changes might have taken place, and the meaning that the person might attach to the changes. Research into the causal relationship between exposure to life events and the onset of psychiatric problems is also warranted.

Adolescent↗

PubMed1997

Nutritional support for patients with intellectual disability and nutrition/dysphagia disorders in community care.

Patients with intellectual disability and neurological handicaps associated with swallowing difficulties are vulnerable to dehydration and undernutrition. Some patients are severely undernourished, a condition which is usually associated with recurrent food aspiration and respiratory infections. Underweight patients are usually provided with adequate dietary protein by carers: their low energy intakes reflect inadequate intakes of fat and carbohydrate. Many patients gain weight following the provision of easily assimilated energy-dense fat- and sugar-containing foods. Where these measures fail, the provision of a percutaneous endoscopic gastrostomy (PEG) tube may be life-saving. Optimal supervision of patients with severe nutrition/dysphagia problems requires a support network linking carers at home or in community care facilities with the primary health care team and the local district general hospital.

Anthropometry↗

PubMed2005

Fair shares? Supporting families caring for adult persons with intellectual disabilities.

BACKGROUND: Although the majority of adult persons with intellectual disabilities are cared for by their families, remarkably little is known of the characteristics of their carers, the support services they receive and their unmet needs. A particular concern is whether or not carers have equitable access to services. METHOD: Information was gathered from service staff who knew best the person with the disability. A standard pro forma was used with a representative sample of over 1500 family carers in Northern Ireland (26% of the estimated population). RESULTS: Nearly half of the people were being cared for by both parents, but around one third lived with lone carers and 20% with another relative. These subgroups of carers varied significantly in their personal characteristics and in terms of the person for whom they cared. However, Regression Analyses identified that their relative's higher dependency in person care was the only common variable that was predictive of carers' access to support services. A possible measure of unmet need for various support services was derived. CONCLUSIONS: Services need to pay greater attention to the characteristics of family carers so as to overcome some of the present inequities in supports offered to them. Further areas for future research are identified.

Adult↗

PubMed1995

Employment, retirement and elderly persons with an intellectual disability.

A national Australian study of people with an intellectual disability of 55 years of age and over investigated their employment and retirement patterns, attitudes to work and retirement, and the degree to which they were involved in leisure or recreational programmes. Two cohorts were recruited: one included all known members of the target group who agreed to participate in the study in the states of Queensland and Western Australia; and the second was a proportional, random sample drawn from a national database on a state population basis. A large number of the participants had never been involved in full- or part-time employment, either in a competitive or supported environment, or in workshops. The majority of those who had worked expressed strong positive attitudes toward employment and concern about retirement, suggesting the need for pre-retirement programmes including transition and choice-making skills to prepare participants for the future.

Aged↗

PubMed2002

Sleep problems and daytime problem behaviours in children with intellectual disability.

BACKGROUND: Sleep problems are common among children with intellectual disability (ID). METHOD: The present study assessed the prevalence of severe sleep problems in a sample of children (n=286) with mild to profound ID who lived at home with their parents(s) in the Netherlands. It also explored relationships between severe sleep problems, and family and child variables. Demographic information, data on children's sleep behaviours and parent variables were collected using questionnaires. RESULTS: Severe settling problems, night waking and early waking were present in 4.2%, 10.8% and 4.2% of cases, respectively; 16.1% of children had at least one type of sleep problem. Children with a severe sleep problem had more severe levels of ID, used medication more often, had a greater frequency of epilepsy, were younger, had a greater frequency of cerebral palsy, and showed more daytime drowsiness and daytime napping than children without a severe sleep problem. Furthermore, children with a severe sleep problem showed more severe levels of daytime problem behaviours; for example, aggression, non-compliance and hyperactivity. CONCLUSION: The results of the present study are discussed with regard to the assessment and treatment of sleep problems in children with ID.

Adolescent↗

PubMed2002

The relationship between levels of mood, interest and pleasure and 'challenging behaviour' in adults with severe and profound intellectual disability.

BACKGROUND: Research on affective disorders in adults with intellectual disability (ID) suggests that depression may not present a 'classic picture' in individuals with severe and profound ID, but may include challenging behaviours, which are referred to as 'atypical symptoms', such as self-injury, aggression and irritability. The aim of the present study was to explore whether there is an association between constructs relating closely to the core symptoms of depression and challenging behaviours in adults with severe and profound ID. METHOD: Mood and levels of interest and pleasure were measured in 53 adults with severe or pro-found ID using the Mood, Interest and Pleasure Questionnaire (MIPQ). RESULTS: Two groups of adults were identified based on MIPQ scores: (1) a 'low mood' group (lowest score = 12); and (2) a comparison group (highest scoring = 12). The groups were clearly differentiated on the MIPQ (P < 0.0001), but were comparable on age, gender and medication use. The Challenging Behaviour Interview showed no difference between the two groups in self-injury, aggression or disrupting the environment. A secondary analysis revealed that participants who showed challenging behaviour scored significantly lower on the MIPQ than those who did not show challenging behaviour. CONCLUSIONS: Possible reasons for these results and considerations for future studies are discussed.

Adult↗

PubMed2002

Contraception of women with intellectual disability: prevalence and determinants.

The contraception of women with intellectual disability (ID) is a major concern for caregivers. However, the prevalence of contraception and the frequency of use of different methods (e.g. sterilization) remain generally unknown. Moreover, indications specific to women with ID are controversial. The present authors conducted a population-based study among 97% of the women with ID aged between 18 and 46 years attending government-funded facilities in Brussels and the nearby province of Walloon Brabant in Belgium. Out of 397 subjects, 40.8% did not use any contraceptive method, 22.2% were sterilized, 18.4% used an oral contraceptive agent, 17.6% used depotmedroxyprogesterone acetate and 1% used an intrauterine device. These figures differ widely from those of the general Belgian population. Binary logistic regression for 'contraceptive utilization' showed the strong influence of institutional factors such as sleeping environment (i.e. institutional or parental), sexual relationship policy and contraception policy. Having or having had a boyfriend is also correlated with a stronger probability of contraceptive use. Other factors have a smaller influence (e.g. a milder level of ID). Very few factors, none of which are medical, are correlated with an increased use of a specific method. The present results are discussed in the light of the general medical application of contraception and the commonly assumed specific indications for women with ID.

Adult↗

PubMed2001

The prevalence of constipation in institutionalized people with intellectual disability.

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. All subjects were scored for bowel habits. Constipation was defined as having a bowel movement less than three times a week or the necessity of using laxatives more than three times a week. Further possible accompanying factors were evaluated. The control subjects were defined as individuals who did not use laxatives. Subjects with constipation were defined as patients and were compared to subjects without constipation (controls). One hundred and forty-nine out of 215 cases (69.3%) showed constipation. Constipation was significantly correlated with non-ambulancy, cerebral palsy, the use of anticonvulsive medication or benzodiazepines, H2-receptor antagonists or proton pump inhibitors, food refusal, and an IQ < 35. Fifty-eight per cent of the patients used bisacodyl or magnesium oxide, 39% lactulose, 13% sodiumlaurylsulphoacetate/sodium citrate/sorbitol and only 10% were given sodium phosphate enemas. Faecal soiling was found in 15% of subjects, while manual evacuation of faeces was performed in nearly 7% of cases. Constipation was randomly demonstrated in almost 70% of the population with ID. Subjects with the above-mentioned accompanying factors are especially at risk for constipation. Contrary to the general population, constipation in people with ID is associated with little use of phosphate enemas, microlax, a low incidence of faecal soiling and manual evacuation of faeces, suggesting an aetiology without distal faecal impaction. The regimen and effect of therapy has to be studied to define adequate treatment schedules.

Adolescent↗

PubMed1998

Prevalence of fragile-X syndrome and FRAXE among children with intellectual disability in a Caribbean island, Guadeloupe, French West Indies.

Fragile-X syndrome (FXS) is the most common cause of inherited intellectual disability. Although FXS has been identified in all the main ethnic groups, little is known about its prevalence with respect to ethnicity. Since the identification of the FXS primary defect, diagnosis involving DNA analysis has been made possible, allowing efficient screening strategies to be considered. The present authors have carried out FXS screening among children belonging mainly to the Afro-Caribbean ethnic group (163 boys and 85 girls) affected with moderate to severe intellectual disability of previously unknown origin. We have found a 6.7% and 0% prevalence among boys and girls, respectively, yielding a minimum FXS incidence of 0.42 per 1000 male births per year. Family studies have resulted in genetic counselling for several individuals. FRAXE screening was also achieved and no FRAXE case was detected in this study.

Adolescent↗