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PubMedDate not supplied

Non-verbal communication method based on a biochemical marker for people with severe motor and intellectual disabilities.

This study evaluated a novel non-verbal communication method for people with severe motor and intellectual disabilities (SMID) based on a biochemical marker, salivary amylase. The physical and psychological status of 10 people with SMID was quantitatively evaluated using a hand-held salivary amylase activity monitor. Each patient needed daily gastric and/or bronchial tube exchanges and these medical procedures were thought to cause severe distress and pain. Salivary amylase activity and heart rate were simultaneously measured during 32 medical procedures. The medical procedures resulted in a significant mean increase for individuals of 70% in salivary amylase activity. The increase in salivary amylase activity was more than four-fold that observed for heart rate. The structural equation modelling analysis also demonstrated a significant correlation between pain and salivary amylase activity. Our data indicate that salivary amylase activity might be used as a non-verbal method of assessing pain in people with SMID.

Adolescent↗

PubMed1998

Service support to people in Wales with severe intellectual disability and the most severe challenging behaviours: processes, outcomes and costs.

A survey of people with severe intellectual disability and the most severe challenging behaviour in Wales identified five adults living in family homes, 17 in new specialist community housing and 19 in traditional services. With the omission of two people from the latter group and with a restricted collection of data for people living in the family home, the present study explored service input, outcome and costs across the three setting types. Process and outcome indicators for the family home group, who received little service input, were better than those for the traditional service group, although less good than those for the community house group. The specialist community home model produced significant gains over the traditional services in virtually all areas. Across the residential data set as a whole, there was no association between staff:resident ratios and severity of disability or between costs and severity of disability. This was largely true of the service types separately. There was a relationship between costs and service quality. However, this association was underpinned by gross differences between community houses and traditional settings. Costs, processes and outcomes ceased to be related when the two residential types were considered separately. Although higher costs of new community services compared to traditional services may be set against improved outcomes, high costs within the former could not be related to benefit. Outcome indicators were generally related to each other, suggesting that high quality in one sense was matched by high quality in other senses. Outcome was significantly associated with the ability of residents. Outcome indicators also tended to be related to observed staff performance, which was independent of resident ability. Therefore, outcome may be considered as dually determined by differences in resident ability and in what staff did.

Adult↗

PubMed2001

Health status of mothers of adults with intellectual disability.

A cross-sectional survey was conducted to describe the health of mothers of adults with intellectual disability (ID), and the influence of the mother's and her adult child's characteristics on her health. The sample consisted of 108 mothers divided into mid-life and later-life groups. Four service agencies mailed SF-36 forms and demographic questionnaires to their clients. The return rate from primary caregivers was 70%. The physical and the mental components of health of both groups of mothers were found to be similar to or better than those of their counterparts in the US national norms. Arthritis was found to influence the physical health of both groups of mothers. Employment was found to influence physical health of the mid-life mothers, while family income was found to influence mental health of the later-life mothers. The characteristics of adults with ID did not influence the mothers' health significantly. Mothers' caregiving for their adult children with ID might not be as detrimental to the mid-life mothers' physical component of health as it might be to the later-life mothers. Further studies are needed.

Adult↗

PubMed2001

Police attitudes toward people with intellectual disability: an evaluation of awareness training.

It is argued that more favourable police attitudes to people with intellectual disability (ID) are essential in meeting the police code of ethics, which stresses impartiality and respect for human dignity. The need to acknowledge and investigate the extent of support for eugenic attitudes in other key professionals who have a significant role in the successful inclusion of people with ID in community settings is discussed. The present paper reports on the evaluation of an awareness training event conducted by the Royal Ulster Constabulary in terms of the impact on attitudes towards people with ID held by police officers. The quasi-experimental design involved the measurement of participants' attitudes prior to and following awareness training, and the comparison of these data with a control group of participants who did not undertake awareness exercises. The Attitudes toward Mental Retardation and Eugenics (AMRE) scale was the instrument used to measure attitudes. Analysis identified the presence of varying degrees of support for the application of eugenic principles to people with ID. Furthermore, the results indicate that participation in the awareness exercise and subsequent discussions is associated with a significant reduction in support for eugenic-based attitudes towards people with ID by the police officers involved. Investment in training events which target attitudes towards people with ID can bring about a shift in reported attitudes. The importance of evaluating such awareness-raising exercises and their impact on police behaviour is highlighted.

Adult↗

PubMed2001

Sensory impairments, intellectual disability and psychiatry.

The present review looks at: (1) prevalence studies of sensory impairments in people with intellectual disability (ID); (2) studies looking at psychological and psychiatric disorders in people with sensory impairments; and (3) studies that have examined the association of sensory impairments with autism. Research has indicated that sensory impairments are more common in people with ID. Psychiatric disorders are believed to be more common in children with visual impairment (VI) when associated with other handicaps. Some authors believe that hearing impairment (HI) can result in personality disorders. Studies have also shown a higher prevalence of psychiatric disorders in children with HI and a higher incidence of deaf people in psychiatric hospitals than in the general population. Psychiatric disorders in children with HI are particularly associated with low IQ and low communication ability, especially in those with multiple handicaps. There is little evidence for a higher incidence of schizophrenia in people with HI. Blind people demonstrate many autistic-like features and there has been discussion in the literature as to their cause. Deaf people also demonstrate some similar features to those in autism, but an association with autism has not been conclusively made. Deaf-blind people commonly demonstrate problem behaviour (e.g. self-injury). Usher syndrome, which is the most common cause of deaf-blindness, is associated with psychiatric disorders, particularly psychosis. The need for assessment of sensory functioning in people with ID, the difficulties inherent in this and the need for specialist services is stressed.

Autistic Disorder↗

PubMed2005

Factors affecting placement of a child with intellectual disability.

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

Child↗

PubMed2007

Melatonin and sleep disorders associated with intellectual disability: a clinical review.

BACKGROUND: Melatonin is used to treat sleep disorders in both children and adults with intellectual disability (ID), although it has no product license for such use. The evidence for its efficacy, potential adverse effects and drug interactions are reviewed in the context of prescribing to people with ID. METHODS: A literature search was performed using multiple electronic databases. More literature was obtained from the reference lists of papers gathered through the searches. RESULTS: Most of the studies were uncontrolled and the few controlled trials available were of small size. Melatonin appears effective in reducing sleep onset latency and is probably effective in improving total sleep time in children and adolescents with ID. It appears to be ineffective in improving night-time awakenings. Melatonin is relatively safe for short-term use. Its safety for long-term use is not established. Potential drug interactions, possible effects on puberty and concerns regarding the use of melatonin in epilepsy, asthma and depressive disorders are discussed. CONCLUSIONS: Melatonin appears to be an effective sleep-initiator for children and adolescents with ID and probably has a similar effect for adults. There may be heterogeneity of response depending on the nature of the sleep problem and cause of the ID or associated disabilities. Further studies are necessary before firm conclusions can be drawn and guidelines for the use of melatonin for people with ID formulated.

Adolescent↗

PubMed1992

Appraised significance of intellectual disability for parents of children in three age cohorts: exploring the stress process.

The conceptualization of stress as a process involving stressors, mediators and manifestations of stress has opened up a way of more systematically investigating the impact of perceptions on stress experienced by parents of children with intellectual disabilities. Results obtained at the end of the first part of a two-stage panel design study indicate that appraised significance perceptions of parents are potentially exacerbating mediators of parental stress. Findings of a multiple regression analysis were interpreted as being consistent with the proposition that the parent-appraised significance of the child's disability for their parental role becomes increasingly salient as an exacerbating mediator of parental stress during the later childhood to early adolescent years. An attempt will be made to test this proposition when the children in the 3-5 year old cohort moves into the 10-12 year-old age category.

Activities of Daily Living↗

PubMed2006

Effectiveness of treatment programmes for depression among adults with mild/moderate intellectual disability.

BACKGROUND: The current study describes the development and evaluation of group treatment programme for people with mild/moderate intellectual disability (ID). METHODS: A total of 34 participants (16 males, 18 females) completed the treatment programme and 15 participants (six males, nine females) comprised a control group. RESULTS: Compared to the control group, the intervention group showed an improvement in levels of depression, positive feelings about the self, and lower levels of automatic negative thoughts after the intervention. These changes were maintained at 3-month follow-up. CONCLUSIONS: These results demonstrate that intervention programmes are effective for the treatment of depression among people with ID.

Adult↗

PubMed1999

The use of ECT in intellectual disability.

The present survey examines the use of electroconvulsive therapy (ECT) by consultant psychiatrists working with people with intellectual disability in Trent Region, UK, which has a population of 4.7 million people. In the first phase of the study, all consultants in the area were sent a questionnaire to find out how many patients had been given ECT during the previous 5 years. Some 92% of the consultant psychiatrists returned the questionnaires. Eight patients were given a total of 122 ECTs, which is low when compared with the use of ECT by general adult psychiatrists. The second phase of the research involved a study of the individual medical case notes to obtain information about individual indications for ECT, outcome and consent issues. The commonest indication for ECT was depression, and the best response was obtained when the clinical picture was dominated by biological and/or psychotic symptoms.

Adult↗

PubMed2001

Patterns of offending among people with intellectual disability: a systematic review. Part I: methodology and prevalence data.

A systematic review of research on offenders with intellectual disability (ID) was conducted. In the present study, the first of a two-part presentation of the findings, the authors outline the methodology of the review and present data on the prevalence of offending by adults with ID. The review highlights the methodological problems of the research and the low level of rigour in many of the studies. The organization of the penal and 'care' systems are seen to have a huge impact on research findings. In addition, studies which adopt an IQ-based concept of ID show low rates of offending, whilst those which use wider definitions (e.g. attendance at special school) show higher ones. There is also preliminary evidence for believing that the prevalence of arson and sexual offences may be higher relative to other kinds of crimes for people with ID than for other offenders.

Conduct Disorder↗

PubMed2006

Breaking the hype cycle: using the computer effectively with learners with intellectual disabilities.

There has been huge growth in the use of information technology (IT) in classrooms for learners of all ages. It has been suggested that computers in the classroom encourage independent and self-paced learning, provide immediate feedback and improve self-motivation and self-confidence. Concurrently there is increasing interest related to the role of technology in educational programs for individuals with intellectual disabilities. However, although many claims are made about the benefits of computers and software packages there is limited evidence based information to support these claims. Researchers are now starting to look at the specific instructional design features that are hypothesised to facilitate education outcomes rather than the over-emphasis on graphics and sounds. Research undertaken as part of a post-school program (Latch-On: Literacy and Technology - Hands On) at the University of Queensland investigated the use of computers by young adults with intellectual disabilities. The aims of the research reported in this paper were to address the challenges identified in the 'hype' surrounding different pieces of educational software and to develop a means of systematically analysing software for use in teaching programs.

Adolescent↗

PubMed2003

Diagnostic instruments for dementia in older people with intellectual disability in clinical practice.

There is a need for simple and reliable screening instruments for dementia in the intellectual disability (ID) population that can also be used to follow their progress, particularly if they are being treated with anti-dementia drugs. Commonly used tests for the general population such as the Mini Mental State Examination (MMSE) are not appropriate for many people with ID. This paper is a literature review of alternative instruments that have been used in research or recommended by experts since 1991 and have the potential to be used as screening instruments. Two types of tests have been identified: those administered to informants, and those that rely on direct assessment of the individual. The most promising informant rated screening tool in most adults with ID including Down syndrome (DS) diagnosis is the Dementia Questionnaire for Persons with Mental Retardation (DMR). However, sensitivity in single assessments is variable and cut-off scores need further optimisation. In those with DS, the Dementia Scale for Down Syndrome (DSDS) has good specificity but mediocre sensitivity. The Test for Severe Impairment and Severe Impairment Battery are two direct assessment tools that show promise as screening instruments, but need further evaluation.

Cognition Disorders↗

PubMed2005

Self-concepts of parents with a child of school age with a severe intellectual disability.

The self-concepts of Hong Kong Chinese parents with a child of school age with severe intellectual disability were explored. A 20-item Adult Sources of Self-Esteem Inventory (ASSEI) and open-ended questions on self-evaluation and interviewing were adopted as the major procedures to identify the source and basis of their self-conceptions. One hundred and nine parents--35 males and 74 females, aged 31 to 45--participated in this study. The results indicated that the participants showed similar life priorities as the control group (parents of non-handicapped children). However, the participants showed significantly lower concept of self than the control group in most areas of life. An exploratory factor-analytic result showed that the parents' concept of self had a one-dimensional structure, which might indicate the parents' lack variety in their life. An analysis of the contents of the open-ended responses showed that family and work were the most important domains of the concept of self. However, most of the respondents stated that poor family relationships, the health problems of their child, and work and financial problems made them 'feel bad'.

Adult↗

PubMed2005

The reliability and validity of general psychotic rating scales with people with mild and moderate intellectual disabilities: an empirical investigation.

BACKGROUND: Whilst assessment tools have been developed to diagnose schizophrenia in people with mild intellectual disabilities (IDs), little attention has been paid to developing reliable and valid dimensional measures of psychotic experiences with this population. This study investigates the reliability and validity of two such measures developed for the general adult psychiatric population, the Positive and Negative Syndrome Scale (PANSS) and the Psychotic Symptom Rating Scales (PSYRATS), with a population of adults with mild IDs. METHOD: Sixty-two adults with mild IDs were interviewed using the PANSS and PSYRATS, and independently interviewed using the Psychiatric Assessment Schedule--Adults with Developmental Disability (PAS-ADD) to obtain psychiatric diagnoses to the criteria of the International Classification of Diseases--Tenth Revision (ICD-10). On the basis of ICD-10 diagnosis, participants were divided into three groups: psychosis (n=11); other mental health problem (n=14); no mental health problem (n=37). PANSS and PSYRATS subscale scores were compared across these three groups and were correlated with PAS-ADD symptom scores across a number of PAS-ADD symptom domains. RESULTS: All PANSS and PSYRATS subscales showed adequate internal reliability, largely good test-retest reliability, and logical inter-correlations between subscales. The PANSS positive symptoms and the PSYRATS auditory hallucinations subscales differentiated between the psychosis group and the other groups; the PANSS general symptoms subscale differentiated between the psychosis and no mental health problem groups; and the PANSS negative symptoms and the PSYRATS delusions subscales did not differentiate between the three groups. CONCLUSIONS: The PANSS and PSYRATS are promising measures for use with people with mild IDs and psychotic experiences, although further investigation of items relating to negative symptoms and delusions is warranted.

Adolescent↗

PubMed2004

The incidence of cancer in people with intellectual disabilities.

OBJECTIVE: During the last 50 years there have been significant improvements in life expectancy among people with intellectual disability (ID), and so their incidence of age-associated diseases, such as cancer, is rising. The aim of this study was to compare the rate of cancer in people with ID with that found in the general population. METHODS: Information on 9409 individuals registered with the Disability Services Commission of Western Australia was linked to the State Cancer Registry, with 200 cases of cancer detected over 156,729 person-years. Standardised incidence ratios (SIRs) and 95% confidence intervals were calculated for both sexes separately by 5-year age groups for the period 1982-2001. The same procedures were adopted in the estimation of SIRs for specific types of cancers. RESULTS: The age-standardised incidence of all cancers in people with ID was not significantly different from the general population. However, males with ID were observed to have a significantly increased risk of leukaemia, brain and stomach cancers, and a reduced risk of prostate cancer, while leukaemia, corpus uteri and colorectal cancers were significantly higher in females. CONCLUSIONS: Health practitioners need to be aware that with improvements in life expectancy the incidence of cancer in people with ID is likely to rise. More proactive health promotion campaigns may be needed for people with ID, who are likely to be poor users of screening services and whose symptoms may not be reported until they are in more advanced, less treatable stages of disease.

Adolescent↗

PubMed1999

Dysthymic disorder in adolescents with intellectual disability.

The present report examines the clinical features of dysthymic disorder in a sample of adolescents with mild intellectual disability (ID). Frequency of symptoms, comorbidity, agreement between reports of subjects and parents, comparison between the frequency of depressive symptoms in subjects with ID and in two different groups of normal IQ dysthymic subjects (aged 7-11, 11 and 12-18 years) are described. The sample consisted of 12 subjects (age range = 12-25.6 years; mean age = 16.3 years) screened from unselected consecutively referred patients with mild ID. All the subjects were comprehensively diagnosed with a structured diagnostic interview, the Kiddie-Schedule for Affective Disorder and Schizophrenia (K-SADS), according to DSM-IV criteria. A symptomatic profile in the group with ID showed that intrapsychic and cognitive symptoms, such as depressed mood, irritability, pathological guilt and low self-image, were frequently reported in people with ID. Parents were less aware of depressed mood, but they reported high rates of low self-esteem; the agreement between the depressive reports of ID subjects and their parents was higher than in previous findings in normal IQ children. The symptomatic profile of subjects with ID was more comparable to that of prepubertal dysthymic children than that of dysthymic adolescents, but more significant are the analogies between dysthymic disorder in ID and normal IQ subjects. High rates of comorbidity with generalized anxiety disorder were evident in the group with ID. According to the present data, dysthymic disorder can be diagnosed in adolescents with mild ID. The K-SADS clinical interview seems to be a reliable instrument for the diagnosis and clinical definition of depressive symptomatology in this special population.

Adolescent↗

PubMed2006

Living conditions of adults with intellectual disabilities from a gender perspective.

BACKGROUND: The role of gender has been a neglected issue in research on intellectual disability (ID). People with ID are generally treated as a homogenous group that are largely categorized by their level of ID. This study compared living conditions of women and men with ID and related the results to similarities and differences among the general population in corresponding age groups. METHODS: Persons with ID born in Uppsala County between 1959 and 1974 constituted the study sample. Information on the living conditions of 110 persons with ID was collected using questionnaires completed by relatives and staff. Information on living conditions of the general population was obtained through national welfare statistics conducted by Statistics Sweden (SCB). RESULTS: In both samples corresponding diversities were revealed for type of employment/daily activities, where women worked in traditional female job sectors and men were occupied with traditional male jobs. Women and men with ID participated to about the same extent in recreational and cultural activities and on only four of the 19 activities listed in the questionnaire (visits to the cinema and library, reading books and practising hobbies alone) significant differences were observed. Among women and men in the general population, we found gender-related differences in 13 of the activities listed. However, with the exception of women more frequently visiting the library and reading books, the two samples demonstrated no corresponding gender-related differences. For the remaining six domains (finances, family and social relations, housing, transport, community participation and personal safety), no differences were noted between women and men with ID. This finding contrasted sharply with the differences found between women and men in the general population. CONCLUSIONS: Surprisingly, the comparison yielded few differences in living conditions between women and men with ID compared with those found in women and men of the general population. This finding suggests that people with ID were treated as gender-neutral persons rather than as women and men with individual preferences and needs. Thus, it appears that having ID is a more important determinant than gender regarding living conditions for women and men with ID.

Activities of Daily Living↗