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PubMed1997

Mental disorders and problematic behaviours in people with intellectual disability: future directions for research.

In recent years there has been a major growth of interest in the field of mental health and intellectual disability. This article outlines some of the issues that will be important to address in the coming years. The issues discussed include: the interaction of biological and environmental factors in the aetiology of behavioural and psychiatric disorders; diagnosis and classification; epidemiology; dementia; recognition of mental illness in the community; treatment; service provision; and training.

Conduct Disorder↗

PubMed2003

Prevalence, aetiology and comorbidity of severe and profound intellectual disability in Finland.

BACKGROUND: The aim of the present study was to describe the aetiology, associated impairments and prevalence of severe and profound intellectual disability (SPID) in Finland. METHODS: The number of people with SPID in the catchment area of the Pääjärvi Centre for the Mentally Retarded, Lammi, Finland, (total population = 341,227) was calculated from the client register of this centre. Aetiological factors and background diagnoses for all subjects with SPID were analysed retrospectively. RESULTS: The number of people with SPID was 461, giving a prevalence of 0.13%. The aetiology of their SPID was genetic or congenital in 235 (50.9%) individuals, acquired in 89 (19.3%), genetic and/or acquired in 84 (18.3%), and unknown in 53 (11.5%) subjects. Out of the 53 individuals with an SPID of unknown origin, 48 (90.6%) had an associated impairment; the remaining five were the only members of the study group showing normal growth, and having neither dysmorphic features, physical abnormalities nor family members with ID. Out of the 461 subjects, 422 (91.5%) had between one and six associated impairments (total = 954), and the remaining 39 (8.5%) had SPID as their only impairment. Uncomplicated SPID was mainly of genetic or congenital origin, whereas all subjects with acquired encephalopathy had multiple disabilities. Speech defects, epilepsy and cerebral palsy were the most common associated impairments. CONCLUSIONS: Severe and profound ID almost always occurs concomitantly with other severe neurological or psychiatric impairments. The proportion of people with SPID described in the present study is similar to that found in Finland in 1966. The aetiology of SPID in the vast majority of cases is biopathological.

Adolescent↗

PubMedDate not supplied

Fathers of children with Down's syndrome versus other types of intellectual disability: perceptions, stress and involvement.

BACKGROUND: The present study examined fathers' perceptions of, stress relating to and involvement with children with Down's syndrome (DS) (n = 30) versus those with other types of intellectual disability (ID) (n = 20). METHODS: Fathers and mothers completed questionnaires about their children's personalities and maladaptive behaviours, their own parenting stress, and the fathers' level of involvement. RESULTS: Both fathers and mothers rated their children with DS as having more positive personality traits and fewer maladaptive behaviours. Possibly because of these positive perceptions, fathers of children with DS also reported less child-related stress, particularly in the areas of acceptability, adaptability and demandingness. The two groups of fathers were very similarly involved in child rearing. The personality, age and maladaptive behaviours of the children related to stress levels in the fathers of children with DS, while maladaptive behaviours, gender and the fathers' education levels related to stress levels in the fathers of children with other types of ID. CONCLUSIONS: These results highlight the importance of examining parental stress and involvement with children with different types of ID.

Child↗

PubMed1996

Dutch consensus on diagnosis and treatment of hearing impairment in children and adults with intellectual disability. The Consensus Committee.

This is an abridged translation of a recent Dutch consensus on diagnosis and treatment of hearing impairment in children and adults with intellectual disability. Available diagnostic methods are discussed. The use of Oto-Acoustic Emissions as a rapid and low-cost objective screening method is particularly encouraged. Risk groups, protocols for early identification and diagnostic screening in older children and adults, recommendations for treatment and support, and priorities for research have been formulated.

Acoustic Impedance Tests↗

PubMedDate not supplied

Explaining the parental stress of fathers and mothers caring for a child with intellectual disability: a Double ABCX Model.

BACKGROUND: Twenty variables based on the Double ABCX Model of adaptation and selected on the basis of previous research were chosen to explain the parental stress of the mothers (n = 116) and fathers (n = 120) of children with an intellectual disability (age range = 1- 10 years). METHODS: Principal component analysis, rotated into varimax-criterion, was done separately for mothers and fathers. The solution containing eight factors was considered best for both groups. They accounted for more than 70% of the total variance of the original variables. These eight orthogonal components were then entered into a stepwise regression analysis that was done separately for mothers and fathers. RESULTS: The multiple regression equations obtained explained 72% of the variance in maternal stress and 78% of the variance in paternal stress. The equations for mothers and fathers contained six and seven components, respectively. CONCLUSIONS: The variables used in the present study were highly successful in accounting for parental stress. The results confirm the importance of intervening factors in explaining the stress. The single most important predictor of parental stress was the negative definition of the situation. In mothers, the negative definition was associated with the behavioural problems of the child while, in fathers it was connected with the experienced social acceptance of the child.

Adult↗

PubMed2006

Social inclusion in workplaces where people with intellectual disabilities are employed: implications for supported employment professionals.

This research investigated elements of workplace culture across eight New Zealand workplaces where people with intellectual disability were employed. Using a semi-structured interview format, eight employers were surveyed, and variations in job entry procedures, orientation and training, company policies, job design, customs and practice, and social opportunities were examined. Factors influencing inclusion in the workplace culture of a total of 16 employees, eight supported employees and eight co-workers without disabilities, were identified and compared. The findings indicated that supported workers had a lower level of inclusion than co-workers. Several factors influencing inclusion of employees in the workplace culture were identified; full-time vs. part-time, level of employment support, limiting expectations and employer/co-worker attitudes. The use of a workplace culture survey by supported employment professionals has several benefits, including the identification of potentially inclusive workplaces, the facilitation of a good person and workplace environment match, the possibility of monitoring inclusion levels, encouragement of full work shift placements, and the provision of effective support on the job.

Humans↗

PubMed2000

Epilepsy and intellectual disability.

A Medline and Psychline literature review of epilepsy in people with intellectual disability was performed. The review has highlighted the importance of the impact of epilepsy on the lives of individuals and their families, affecting physical morbidity, leading to an increased mortality and increasing the care-giving burden. Interventions with a strong evidence base are mainly pharmacological with an increasing body of work on the novel antiepileptic drugs. Surprisingly little research exists into the quality of service provision for this population. The authors suggest three areas for future work: (1) an increasing application of research methodologies such as direct observation and qualitative studies into this field; (2) an exploration of the broad impact of treatment and (3) the possibility that epilepsy is a barrier to care provision.

Cognition Disorders↗

PubMed2005

Assessment of patients with intellectual disability using the International Classification of Functioning, Disability and Health to evaluate dental treatment tolerability.

BACKGROUND: Patients with serious intellectual disability (ID) are occasionally unable to tolerate dental treatment when intravenous sedation or general anaesthesia (IVS/GA) is involved. In order to make a decision regarding the application of IVS/GA, the International Classification of Functioning, Disability and Health (ICF) is useful. Therefore, in this study, a set of codes involved in dental problems were chosen from the ICF, and patients with ID who could tolerate dental treatments were compared with those who could not. METHODS: From preliminary interviews of six patients with ID, 16 codes were chosen, and an objective five-rank scale was then constructed for use with all chosen codes. Forty-nine ID patients who visited the Okayama University Hospital for dental treatment between January and April 2003 were evaluated. Facility workers were interviewed according to the code set chosen. The participants were then divided into two subgroups depending on their tolerability of dental treatment. The results of these groups for all 16 codes were then compared. RESULTS: Of the 49 patients interviewed, 23 were able to tolerate the dental treatment. In the 'Activities & Participation' section of the ICF, the tolerable group showed lower disability levels with regard to d110 Watching, d540 Dressing and d550 Eating. In other sections, there were no significant differences between the groups. The code set chosen in this study and the five-rank scales in each code were useful as they enabled easy interviewing. CONCLUSIONS: The ICF was raised as a possibility for considering the application of IVS/GA for dental treatment on patients with ID. For clinical use of the ICF, it is recommended that significant codes should be selected and that the five-rank scale is used so that more objective results are obtained from interviews.

Adult↗

PubMed2003

Visual performance in specific syndromes associated with intellectual disability.

PURPOSE: To report visual performance in adults with specific causes of intellectual disability (ID) and to compare the test results to published reports. METHODS: In a large-scale multicenter epidemiologic study of sensory impairments in 1598 adults with ID, the authors performed ocular assessments in 1539 persons. They compared the test results of those with five specific genetic disorders (Angelman syndrome, Prader-Willi syndrome, fragile X syndrome, Williams-Beuren syndrome, and tuberous sclerosis). RESULTS: An overrepresentation of strabismus, low vision, and refractive errors was found. Apart from fragile X syndrome and Prader-Willi syndrome (with in general mild to moderate ID), the other syndrome groups contained one or more subjects with visual impairment or blindness. A number of them had never been seen by an ophthalmologist. CONCLUSIONS: The authors confirm a number of ocular features previously reported by other studies and suggest some additional ocular features. They found increased frequencies of treatable ophthalmologic conditions in the subgroups. Because reliable ocular assessment is feasible for 85% of persons with ID, the results are an incentive to address visual functioning in people with ID in order to correct ocular problems and maximize their possibilities.

Abnormalities, Multiple↗

PubMed2005

Chronicity of challenging behaviours in people with severe intellectual disabilities and/or autism: a total population sample.

The skills, social impairments and challenging behaviours of a total population of 166 children, with severe intellectual disabilities and/or autism, were assessed through interview with the main carers, when the children were under 15 years old (time 1). Twelve years later, 141 of these individuals were re-assessed, using the same measures (time 2). "Abnormal" behaviours tended to reduce with age and were associated with poorer language skills and poorer quality of social interaction. Individuals with most abnormal behaviours at time 1, tended to have most at time 2. Abnormal behaviour at time 2 was predicted by the presence of abnormal behaviour at time 1, poor expressive language at time 1, poor quality of social interaction at time 1 and a diagnosis of autism/autistic continuum at time 1.

Adolescent↗

PubMed2001

Patterns of offending among people with intellectual disability: a systematic review. Part II: predisposing factors.

In the present study, the second part of a review of offending by adults with intellectual disability (ID), data on predisposing factors are presented and there is a discussion of the overall conclusions. The available data are shown to be problematic in a number of respects: there is no offence-specific data; and a number of dimensions are under-explored, specifically race, class and subjective accounts of offenders. Age and gender were the most highly correlated factors, as they are with offenders generally; however, there does appear to be evidence that the average age of offenders with ID is higher than for other offenders. The present authors note with concern the inattention to mainstream criminological research, and a tendency to downplay the extent to which an 'offender' is the outcome of complex and multifarious social processes. The authors also argue that the literature is dominated by unsubstantiated assumptions regarding the direction which policy and practice should take.

Causality↗

PubMed2005

Health, healthcare utilization and psychiatric disorder in people with intellectual disability in Taiwan.

OBJECTIVES: The aims of the present study were to examine health characteristics and healthcare utilization in relation to people with intellectual disability (ID) having psychiatric disorders in Taiwan. METHODS: A cross-sectional study was employed; study subjects were recruited from the National Disability Registration Database. Taiwan, stratified by administrative geographical area for the study. Statistical analysis of 1026 carers for people with ID was made to examine the health status and healthcare utilization of individuals with ID having psychiatric disorders. RESULTS: Approximately 12.1% of people with ID had psychiatric disorders. These individuals were more likely to be poorer in health condition and consuming more medical services (in the outpatient, inpatient and emergency care areas), than those individuals without psychiatric disorders. These individuals with psychiatric disorders were also taking medicines regularly at a far greater percentage than did those without psychiatric disorders. CONCLUSIONS: Given the high prevalence of psychiatric disorders among individuals with ID, the healthcare system should take further steps to develop an appropriate health status monitoring system and community-based and easily accessible mental health services for them.

Adolescent↗

PubMed1989

A comparison of symbol transparency in nonspeaking persons with intellectual disabilities.

This investigation compared the transparency of 11 different types of symbols representing objects with 40 nonspeaking subjects who experienced various degrees of intellectual disability. The subjects included a number of individuals with physical impairments or autism in addition to mild, moderate, or severe mental retardation. The symbol sets included: nonidentical objects, miniature objects, identical colored photographs, nonidentical colored photographs, black-and-white photographs, Picture Communication Symbols (PCS), Picsyms, Rebus, Self-Talk, Blissymbols, and written words. Statistical analyses indicated that real objects were more readily recognized than were any of the symbol sets and that Blissymbols and written words were more difficult than were any of the other sets. In addition, the results suggest the existence of a hierarchy of difficulty at the object (noun) level for the symbol sets assessed. The results are discussed in terms of their implications for selecting an initial symbol set for nonspeaking individuals. In addition, some suggestions for using the assessment protocols in clinical practice are presented, along with future research implications.

Adolescent↗

PubMed2001

Psychiatric adjustment to leaving school in adolescents with intellectual disability: a pilot study.

The negotiation of stressful life cycle transitions may contribute to the higher prevalence of psychiatric disorders amongst people with intellectual disability (ID). It is possible that leaving school at the age of 16 years might place particular psychological demands on adolescents, increasing the risk of psychiatric morbidity at a time when they are vulnerable as a result of losing the links with health services sustained through school attendance. The present pilot study was designed as a prospective cohort study to investigate whether there is an increase of psychiatric morbidity [rated with the Strengths and Difficulties Questionnaire (SDQ), and through semi-structured interviews with parents] in adolescents with ID at the time of their transition from school to adult education and services. Although there was a high frequency (eight out of 10 subjects) of reported emotional and behavioural problems prior to transition, there was no increase or decrease in psychiatric morbidity for the group as a whole during the 6 months after leaving school. However, there were marked individual differences in scores on the SDQ, which may be worth investigating in a larger study.

Adaptation, Psychological↗

PubMed1999

Characteristics of older adults with intellectual disabilities referred for crisis intervention.

The aim of the present study was to identify the age correlates of behavioural crises in adults with intellectual disability (ID) living in the community. The cohort consisted of 185 clients (IQ < 70), ranging in age from 20 to > 70 years, who were referred to a crisis intervention programme specializing in services to individuals with dual diagnosis over a 7-year period. A retrospective cross-sectional analysis of historical and contemporaneous variables was completed. Referrals for crisis intervention were not related to the age of the client Aggression and non-compliant behaviour occurred with similar frequency in all age groups. Other behaviours, including withdrawal, self-injury, stereotypy and symptoms of psychiatric disorders, occurred less often in older clients. Severity of ID affected the pattern of behavioural crises that resulted in referral. The results suggest that people with ID residing in community settings still experience behavioural crises as they grow older. Confirmation of the trends reported in the present study might signal a need for accelerating the development of comprehensive age-span community mental health and behavioural supports.

Adult↗

PubMed2006

Help-seeking process of parents for psychopathology in youth with moderate to borderline intellectual disabilities.

OBJECTIVE: To study the help-seeking process of parents for emotional or behavioral problems in their child with borderline to moderate intellectual disabilities. METHOD: In 2003, in a special education-based sample of 522 youths (ages 10-18 years, response = 77.9%), we studied the parents' perception of their child's problems, their subsequent felt need for professional help, actual help-seeking, and the factors possibly related to taking these steps. RESULTS: Even when parents indicated their child's emotional or behavioral functioning as "neither good nor bad," in about 70%, these problems were present according to standardized measures. Of the 213 parents (40.8%) who perceived problems, 70.6% felt a need, and 55.2% of these parents subsequently sought professional help. Parents more often sought help when their child had problems of anxiety and depression, experienced negative life events, and when parents perceived child psychopathology before the past year. Reported barriers to seeking help predominantly related to parents' evaluation of the severity of these problems and wanting to solve the problems themselves. CONCLUSIONS: Clinicians and other service providers should address parents' concerns regarding their child's emotional/behavioral functioning and treatment seeking. Also, they should provide information on treatment options and on signs and potential negative prospects of their child's problems.

Adolescent↗

PubMed1998

Reliability and validity of the PAS-ADD Checklist for detecting psychiatric disorders in adults with intellectual disability.

The PAS-ADD Checklist is a screening instrument specifically designed to help staff recognize mental health problems in the people with intellectual disability for whom they care, and to make informed referral decisions. The instrument consists of a life-events checklist and 29 symptom items scored on a four-point scale. Scores are combined to provide three threshold scores. The crossing of any of these thresholds indicates the need for a fuller assessment. The items are worded in everyday language, making the Checklist suitable for use by individuals who do not have a background in psychopathology. The present paper presents the results of a number of studies evaluating the reliability and validity of the Checklist. Factor analysis of Checklists completed on a community sample of 201 individuals yielded eight factors, of which seven were readily interpretable in diagnostic terms. Internal consistency of the scales was generally acceptable. Inter-rater reliability in respect to individual items gave a fairly low average Kappa of 0.42. However, agreement on case identification, the main purpose of the Checklist, was quite good, with 83% of the decision being in agreement. Validity in relation to clinical opinion was also satisfactory, case detection rising appropriately with the clinically judged severity of disorder. The PAS-ADD Checklist is published and distributed by the Hester Adrian Research Centre, Manchester, England, from where further information and order forms are available on request.

Adolescent↗

PubMed2001

Sexual abuse in children and adolescents with intellectual disability.

The present authors conducted a study of the occurrence of victimization and the perpetration of sexual abuse among 43 in-patients with intellectual disability aged between 9 and 21 years who were admitted to a child and adolescent psychiatric in-patient department over a period of 5 years. A retrospective case-note review was employed that explored the nature and severity of abuse in relation to the age, gender and level of disability. The prevalence of abuse or abusive behaviour, i.e. 14% of 300 admissions, did not change over time. In 13 out of the 43 cases, the issue of sexual abuse was identified after admission. Victimization alone occurred in 21 cases, perpetration alone in six cases, and both victimization and perpetration in 16 cases. Fifty per cent of the victims had been abused by a member of their close or extended family. Most cases (62%) were adolescents. There was only one instance of a victim being abused by a female. However, there were five girls who were perpetrators, all of whom had previously been victims. By contrast, 11 out of the 17 male perpetrators had been victims. Despite difficulties of disclosure, it was possible to establish that severely disabled patients had suffered sexual abuse. The present data support theories which (1) recognize gender differences in sexual abuse patterns and (2) have a developmental perspective, incorporating the influence of adolescence.

Adolescent↗