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PubMed2002

Emotional and behavioral problems in children and adolescents with and without intellectual disability.

BACKGROUND: The main objective of this study was to assess and compare the prevalence of a wide range of emotional and behavioral problems in children with and without intellectual disability (ID). METHODS: We studied 1,041 non-residential children randomly selected from special schools for educable (IQ 60 to 80) and trainable (IQ 30 to 60) children without severe additional physical or sensory impairments, and compared them to 1,855 children randomly selected from the general population (both ages 6 to 18). Parents completed the Child Behavior Checklist (CBCL), and teachers the Teacher's Report Form (TRF). RESULTS: Controlling for sex, age, and socioeconomic status, we found that both educable and trainable children had significantly higher mean scores on all CBCL and TRF scales than children without ID, except for trainable children on the scales Anxious/Depressed and Somatic Complaints. Almost 50% of children with ID had a Total Problem score in the deviant range compared to about 18% in children without ID. Compared to children without ID, the most prominent problem behaviors of educable children were Social Problems, Attention Problems, and Aggressive Behavior, and trainable children had an increased risk for Social Problems, Attention Problems, Withdrawn and Thought Problems. CONCLUSIONS: Elevated scale scores reflected differences between children with and without ID over a broad range of items, and not solely on items more likely to be related to developmental delay. Therefore, problem areas covered by the items in these scales deserve special attention in the mental health care of children with ID.

Adolescent↗

PubMed2005

Refining diagnoses: applying the DC-LD to an Irish population with intellectual disability.

BACKGROUND: The diagnostic criteria for psychiatric disorders for use with adults with learning disabilities/mental retardation (DC-LD) is a diagnostic tool developed in 2001 to improve upon existing classification systems for adults with learning disability. The aim of this study was to apply the classification system described by the DC-LD to a residential intellectual disability (ID) population to examine whether it improved our diagnostic understanding of residents. METHODS: Chart reviews of 113 of 178 people in a residential ID service were conducted. For each resident, information was recorded according to the DC-LD multi-axial system. Each resident's case was then discussed with a member of nursing staff familiar with the resident. If diagnosis was unclear, the case was discussed with a senior clinical psychiatrist. RESULTS: The percentage of residents with a moderate to profound ID was 87.6%. In total, 94 diagnoses of psychiatric illness (Axis III, Level B, DC-LD) were made. Of those 94 diagnoses, seven new diagnoses were found because of DC-LD criteria. Of the total number of psychiatric diagnoses made, 72.3% were non-specific, residual category diagnoses. A total of 79 residents (69.9%) had at least one behaviour problem diagnosed on Axis III, Level D, Problem behaviours. Fifty-six (49.6%) of residents in this sample had co-morbid epilepsy. CONCLUSIONS: In people with moderate to profound learning disabilities, diagnosis continues to be challenging. The DC-LD is a useful tool in helping to clarify diagnoses in this population by providing revised criteria and a system to classify problem behaviours. The DC-LD would be more helpful if specific axes were included to document medical and psychosocial problems independently from other diagnoses. Further research is warranted to determine whether the DC-LD hierarchical approach to diagnosis improves diagnostic validity.

Adult↗

PubMed2000

Developing a model for quality evaluation in residential care for people with intellectual disability.

The present article describes the development of a general model for the evaluation, enhancement and assurance of quality of care processes in residential facilities for children and adults with intellectual disability. The framework is based on current theories regarding quality of life and quality evaluation, on a consensus between several participants in Delphi discussion-rounds, and on a questionnaire for care providers and clients in all Flemish residential facilities. The model describes 13 quality standards and a list of indicators concerning organization and support interventions. Facilities may use this set of criteria and indicators in several ways within a continuous and dynamic system of internal quality assurance. Finally, the prospects of and conditions for the implementation of this model are discussed.

Adult↗

PubMed2004

Comparing rates of psychiatric and behavior disorders in adolescents and young adults with severe intellectual disability with and without autism.

Eight males and four females with an Autism Diagnostic Interview-Revised (ADI-R) diagnosis of autism (mean age of 16.3 years) and severe intellectual disability (IQ < 40) were individually matched to controls on the basis of chronological age, gender, and nonverbal IQ. The dependent measure was the Diagnostic Assessment for the Severely Handicapped-II, which is used to screen for psychiatric and behavior disorders in lower-functioning individuals. Participants with autism showed significantly greater disturbances as measured by the Diagnostic Assessment for the Severely Handicapped-II total score and seven of 13 subscales. They also averaged 5.25 clinically significant disturbances compared with 1.25 disturbances for participants without autism. Specific vulnerabilities to anxiety, mood, sleep, organic syndromes, and stereotypies/ tics were found in the participants with comorbid autism.

Adolescent↗

PubMed2004

Burnout in direct care staff in intellectual disability services: a factor analytic study of the Maslach Burnout Inventory.

BACKGROUND: There is gathering research interest in the well-being of staff working in services for people with intellectual disability (ID), including the assessment of burnout and its correlates. However, no previous studies have considered the applicability of the main three dimensions of burnout to staff in ID services. METHODS: Data were analysed from two samples of staff (total n=184) who participated in research studies that included completion of the Maslach Burnout Inventory (MBI). RESULTS: Nineteen of the MBI items loaded clearly onto factors closely resembling the three original subscales: emotional exhaustion, depersonalization and personal accomplishment. Internal consistency for the three MBI subscales was fair to good (range 0.68-0.87). CONCLUSIONS: The original three MBI dimensions were found to be highly relevant to the present sample of staff. The analyses support the construct validity and reliability of the MBI for staff in ID services.

Adult↗

PubMed1996

A longitudinal study of the grief of mothers and fathers of children with intellectual disability.

As a follow-up to a single-point-in-time study which suggested support for the proposition that grieving is an ongoing feature of parenting children with intellectual disability, the present investigation reports findings based on annual interviews conducted over a three-year period. Longitudinal outcomes on measures used to define grief largely confirmed the original findings. Of particular interest were (a) indications of the presence of grief over time (b) the finding that the 49 mothers and 49 fathers report similar intensity of continued wishing for what might have been, and (c) the conclusion that the responses of the mothers on the Impact of Event Scale and to current levels of distress when thinking about time of diagnoses are significantly more intense than those of the fathers. Attention is drawn to patterns emerging from gender-related differences. Resulted are discussed within the framework of four mandates for research and practice, with particular reference to psycho-educational support through groupwork.

Adolescent↗

PubMed2003

Medical needs of people with intellectual disability require regular reassessment, and the provision of client- and carer-held reports.

BACKGROUND: Previous work has indicated a wide range of unmet medical health needs in people with intellectual disability (ID). METHODS: A profile of recorded medical needs was produced for 589 people with ID through a detailed search of individual medical and nursing case records. Specialist optometric and audiological assessments were offered, and reports were provided in technical and plain English terms. A Health Watch project delivered folders with copies of the plain English reports to 60 individuals and carers. RESULTS: The case record review indicated a wide range of medical disorders; however, exact diagnoses and counselling regarding underlying neurological conditions were seldom recorded. Assessed levels of hearing and vision loss were much greater than had been previously recognized. The Health Watch reports were welcomed by the clients and carers. CONCLUSIONS: If satisfactory healthcare is to be achieved for people with ID, medical needs must be monitored, regular specialist reassessments offered, access to specialist services facilitated and reports clearly explained to carers.

Adolescent↗

PubMed2006

Long-term outcome from a medium secure service for people with intellectual disability.

BACKGROUND: The purpose of this paper is to describe long-term outcomes for patients discharged over a 12-year period from a medium secure service for people with intellectual disabilities (ID). METHODS: A cohort study using case-notes analysis and a structured interview of current key informants. RESULTS: Eleven per cent of the sample was reconvicted. Fifty-eight per cent of the sample showed offending-like behaviour that did not lead to police contact. Twenty-eight per cent of the sample was currently detained in hospital under the Mental Health Act. The presence of a personality disorder, a history of theft or burglary, and young age increased the risk of reconviction. Contact with the police was less likely in those with schizophrenia. Re-admission to hospital was associated with the presence of offending-like behaviours, rather than any specific diagnosis. CONCLUSION: In terms of reconviction, these results are good compared with those from general forensic services; however, behavioural problems continue for many years and are managed without recourse to the criminal justice system. There is a borderline group whose needs are poorly defined and serviced. Declaration of interests Horizon National Health Service Trust, the managing authority of the service, gave the grant for this study; the corresponding author was working in the service.

Cohort Studies↗

PubMed2000

Life expectancy of people with intellectual disability: a 35-year follow-up study.

A 35-year follow-up study based on a nation-wide population study of the life expectancy of people with intellectual disability (ID) was undertaken. The study population consisted of a total of 60,969 person-years. A prospective cohort study with mortality follow-up for 35 years was used and the life expectancy of people with ID was calculated for different levels of intelligence. Proportional hazard models were used to assess the influence of level of intelligence and associated disorders on survival. People with mild ID did not have poorer life expectancy than the general population and subjects with mild ID did not have lower life expectancy in the first 3 decades of life. In cases with profound ID, the proportion of expected life lost was > 20% for almost all age groups. The female preponderance was manifested from the age of 60 years onwards, 25 years later than in the general population. Respectively, survival between sexes differed less. Epilepsy and/or hearing impairment increased the relative risk of death for all levels of ID. The prevalence of people with ID over 40 years was 0.4%. People with ID now live longer than previously expected, and the ageing of people with mild ID appears to be equal to that of the general population, posing new challenges to health care professionals.

Adolescent↗

PubMed2005

Emotional and behavioural needs of children and adolescents with intellectual disabilities in an urban conurbation.

BACKGROUND: Over the past decade, increased attention has been paid to identifying and responding to the emotional and behavioural needs of children and adolescents with intellectual disability (ID). The aims of the present study were to add to this body of knowledge by identifying factors associated with emotional and behavioural needs among a sample of children with ID drawn from a large urban conurbation. METHOD: Information was collected by postal questionnaire (or interview for family carers who did not have English as their first language) from teachers and from family carers of 615 children administratively identified as having ID (47% of all children with ID). RESULTS: Results indicated that: (1) the administrative prevalence of moderate but not severe ID was associated with social deprivation whereas the prevalence of severe but not moderate ID appeared to be associated with ethnicity; (2) 54% of children scored above the threshold on the Developmental Behaviour Checklist (DBC)-primary family carer, and 37% of children scored above the threshold on the DBC-teacher; (3) social deprivation, male gender, less severe ID and having fewer physical or sensory impairments were associated with antisocial and disruptive behaviour; and (4) more severe ID and additional impairments were associated with anxiety, communication disturbance, social relating and self-absorbed behaviours. CONCLUSIONS: These results identify a range of risk factors associated with behavioural and emotional problems experienced by children with ID.

Adolescent↗

PubMed2002

Injury risk in young people with intellectual disability.

Epidemiological studies have established injury as a major public health problem for young people in the general population, but minimal population-based injury information exists on those with intellectual disability (ID). The present study investigated risk factors for injury to subjects in the Australian Child and Adolescent Development (ACAD) programme, which is examining emotional and behavioural problems in young people with ID. Extensive biopsychosocial data for the ACAD programme were collected at two time intervals (i.e. 1990-1991 and 1995-1996). Carer report of medically attended injury over one year was collected for the first time period (1995-1996) on a sample of 465 ACAD subjects (aged 5-29 years) representative of young people with ID (IQ < 70) to determine risk factors for injury using the ACAD biopsychosocial data. Psychopathology [odds ratio (OR)=3.4] epilepsy (OR = 2.4) and an overly sociable temperament (OR=2.2) are associated with injury in young people with ID. Social and family factors had minimal influence on injury risk in this population. Those who are highly disruptive, self-absorbed, anxious, have problems relating socially, have communication disturbance or have attention deficit hyperactivity symptoms are particularly at increased risk for injury. The present study demonstrates a largely under-recognized public health problem of a high unintentional injury risk for young people with ID, and identifies substantial and important risk factors for injury. Injury prevention programmes, with a particular focus on those with highly disturbed behaviours or epilepsy, are warranted in this population.

Accidents↗

PubMed2006

High outpatient visits among people with intellectual disabilities caring in a disability institution in Taipei: a 4-year survey.

Few studies reported in the literature have addressed the long-term trend of the use of medical care for people with intellectual disabilities (ID) in institutions. The subject cohort in this study was made of 168 individuals with ID in a public residential facility from 1999 to 2002 in Taipei, Taiwan. The average age of participants was 19.3 years, and their average stay in an institution was 6.6 years. The average annual outpatient visit of the study participants was 18.2 in the previous 4 years. It was found that they had more medical visits than the general population. Nearly 20.8-34.5% (average 29.0%) of the participants utilized more than 25 visits annually which was defined as high outpatient visit users. This group of high outpatient users consumed more than half of the total annual outpatient care visits in the past 4 years. In the full model of Generalized Estimating Equations to compare the high and non-high outpatient users, the factor of individuals with ID dwelling in the institution were more likely to be high outpatient care users than individuals who were only accepting institutional day care services (OR=6.29, 95% CI=1.35-29.30). The present study provides general information of high outpatient utilization and its determinants of people with ID and provides evidence for medical care decision makers dealing with policy development for people with ID care in institutions.

Adolescent↗

PubMed2001

Supporting independent indoor travel of people with blindness and intellectual disability with reduced frequencies of auditory cues.

This study evaluated the feasibility of supporting independent indoor travel using reduced frequencies of auditory cues with two persons having total blindness and profound intellectual disability. For these persons, who had acquired satisfactory travel performance with cues occurring every 8 sec., the cue frequencies were reduced to one-half or one-third of the original level. Analysis showed that both participants could manage accurate travel under the new cue conditions, even though their travel time (efficiency) seemed negatively affected. Implications of the findings were discussed.

Adolescent↗

PubMed2005

Model underpinning treatment for sex offenders with mild intellectual disability: current theories of sex offending.

Although many writers have provided a theoretical framework for treatment of mainstream sex offenders, this research has not been extended to sex offenders with mild intellectual disability. My purpose here is to bring together several research strands to provide a theoretical model for working in this field, including theories of sex offending, developmental theories for offending, and work on quality of life. In addition to dealing with issues of sex offending, researchers should also investigate developmental and societal issues crucial in the genesis of sex offending and offending in general. Because societal issues are also important for treatment, engagement and identification with society are suggested. Quality of life and issues directly related to sex offending are of central importance.

Community Mental Health Services↗

PubMed2006

Frequent aggression and attribution of hostile intent in people with mild to moderate intellectual disabilities: an empirical investigation.

We investigated whether aggressive individuals have an attributional bias of hostile intent compared to nonaggressive peers. We compared 43 frequently aggressive individuals who had mild to moderate intellectual disabilities with 46 nonaggressive controls on an attributional task. The aggressive participants attributed significantly more hostile intent to protagonists and indicated that they would respond more aggressively than did the controls to provocative scenes, but only when the threat was to themselves. Results suggest that differences in attribution of threat to self play a role in frequent aggression. These differences appear to be due, in part, to a positive bias of the nonaggressive participants on the self-referent scenes. Clinically, results highlight the importance of assessing and addressing aggressive individuals' interpersonal perceptions.

Aggression↗

PubMed2002

Subjective judgements of quality of life: a comparison study between people with intellectual disability and those without disability.

The present study investigated the relationship between objective and subjective measures of quality of life (QoL), and in particular, health status and primary care services. Thirty-one people with intellectual disability (ID) were interviewed using a QoL questionnaire. Thirty-one matched controls from the general population filled in a parallel questionnaire. The results in both groups support the findings of many researchers which indicate that satisfaction with aspects of life is generally high (i.e. approximate 75% of maximum possible satisfaction). The present study also confirms previous findings which indicate that satisfaction with aspects of life does not generally correlate with objective circumstances in either group. The importance that people attach to aspects of their lives did not generally correlate with their objective circumstances or their satisfaction with life. However, people with ID attached greater importance to all aspects of their lives than those without disability. This may be linked to their aspirations, preferences and opportunities for choice, and therefore, these factors may be a more meaningful way of considering their QoL. The present findings call into question the use of satisfaction as a general measure of QoL, and also indicate that the use of importance as a mediating variable in understanding satisfaction may not be a solution. The participants with ID had poorer health than the controls, and were significantly less satisfied with their health. Contrary to other findings, the present participants with ID reported that they had received more health checks than the controls over the previous year. Half of these checks had been carried out by 'special' services rather than primary care services.

Humans↗

PubMed2001

Helicobacter pylori: has the killer escaped from the institution? A possible cause of increased stomach cancer in a population with intellectual disability.

Advancing knowledge of the existence of Helicobacter pylori and its association with gastrointestinal tract malignancy, and previous research showing higher-than-expected gastrointestinal tract malignancy in institutionalized adults with intellectual disability (ID) prompted a review of all deaths as a result of cancer in the Stoke Park group of hospitals for people with ID between 1946 and 1996. A 50-year, retrospective case note analysis of all deaths from cancer in an institution for people with ID was undertaken. Death from stomach cancer accounted for up to 48% of all cancer deaths. A further 25 residents had died of perforated stomach ulcers. The higher proportion of deaths specifically caused by stomach cancer in a population with ID has not been noted previously. It is postulated that the high levels of H. pylori infection found in institutionalized populations may be instrumental in this higher mortality rate and that the closure of the institutions without evaluation of H. pylori status transfers the problem unresolved to the community. Existing guidelines for the screening and eradication of H. pylori developed for the general population are inadequate when applied to people with ID, and therefore, the value of population screening and mass eradication programmes is explored.

Cause of Death↗

PubMed1999

Aetiology of intellectual disability--the Finnish classification: development of a method to incorporate WHO ICD-10 coding.

The present authors made an attempt to ease the diagnostic work of physicians who have patients with intellectual disability by creating an aetiological classification system based on the time and mechanism of injury to the central nervous system (CNS). The current paper presents the work-up needed for understanding at least the timing of the causative factor/factors. The timing principle opens a direct course to family counselling. This method has been very well accepted during its 18 years of use in Finland, and therefore, it was felt that it would be helpful to organize the relevant ICD-10 diagnoses according to the timing principle. This method has been published as a manual. An image of a tree became the obvious metaphor for this system. The genetic category forms the main root and stem, from which multiple branched roots and limbs emerge. The individual diagnoses appear as root nodules and leaves. The system is flexible, making it possible to add new branches for groups of diagnoses when improved diagnostic methods create these options (e.g. microdeletions). The aetiological diagnoses change accordingly. Over the course of further development, new incidents damaging the CNS may affect the functional level of an individual and require additional diagnoses. It is a constant challenge for physicians to keep the diagnoses of their patients up to date. The image of the tree helps professionals to think in terms of timing, and thus, makes family counselling easier. It is also helpful in the education of medical professionals.

Central Nervous System↗