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PubMed1994

Methodological difficulties encountered in determining the service needs of a 'hidden population'.

This report describes some of the methodological difficulties encountered in carrying out a 4-year project designed to locate and determine the service needs of adults in Hong Kong with an intellectual disability over the age of 45 years. The project located 263 adults with an intellectual disability across a wide spectrum of Hong Kong society. The methodological difficulties encountered in attempting to locate these individuals and conducting the survey to determine the service needs of this 'hidden population' included: an interviewing process that was extremely tedious and which took much longer than originally anticipated; problems encountered in trying to convince potential subjects to be interviewed; contending with different dialects and speech comprehension; conceptions of options and choices that were often very limited because of the highly restrictive lifestyle of the individual surveyed; and discrepancies between the views of carers and adults with intellectual handicaps. Data analyses were also hampered by problems in constructing a reliable registry, computerization because of translations of names and responses, and respondent refusals as a result of concerns over stigmatization. The authors offer a discussion of these problems as learning aids for future research.

Aged↗

PubMed1999

Cohesion and parents' social relations in families with a child with disability or chronic illness.

We studied how a child's physical or intellectual disability or diabetes affected family cohesion, the parents' social life, work and leisure-time activities, and whether there was any association between the parents' social relations and family cohesion. The parents of 89 children aged 12-17 years returned a questionnaire and were interviewed by a social worker. Family cohesion increased in all the groups by an average of 27%. The effect was smallest in the families of children with diabetes, whereas in the families with intellectual or physical disability family cohesion increased from 6 to 13 times more often compared to the families of children with diabetes. The increased family cohesion was not associated with the change in the parents' social relationships, work, career or leisure-time activities; the importance of these activities did not decrease even though family cohesion increased. However, a child's chronic illness or disability affects the everyday life of the family, for instance 71% of the parents with diabetic children thought that the regularity of family life increased and about a half of the parents with physically or intellectually disabled children had to change their hobbies because of the child. In planning treatment and rehabilitation for a chronically ill or disabled child more attention should be paid to the whole family and its needs, not only to the child.

Adolescent↗

PubMed2002

Rights not restrictions for learning disabled adults: a response to Spiecker and Steutel.

What follows is a response to an article by Spiecker and Steutel in which they pose the question of whether sex between people with "mental retardation" (sic) is morally permissible and in which they argue that since many such people cannot give "valid consent", the additional consent of caretakers may be required. However, we argue that the term "mental retard" is offensive and that either the UK terminology ("the learning disabled") or the internationally accepted term ("intellectually disabled") are more acceptable. Moreover, we point out that Spiecker and Steutel are mistaken. Many "learning disabled" people can and do give "valid consent". In any case, their question is itself dubious. Why should two learning disabled people who want to have sex together need anyone else's consent? In addition, we briefly address the rights of the learning disabled to the same sexual freedom as others, on the one hand, and to freedom from sexual exploitation on the other hand. Finally, we consider the implications of these issues for moral education. We suggest that carers need to develop empathy and, where necessary, advocacy skills. We point to the existence of training programmes on sexuality and protection issues.

Adult↗

PubMed2024

Effect of the OPHN1 novel variant c.1025+1 G>A on RNA splicing: insights from a minigene assay.

This research analyzes the clinical data, whole-exome sequencing results, and in vitro minigene functional experiments of a child with developmental delay and intellectual disability. The male patient, aged 4, began experiencing epileptic seizures at 3 months post-birth and has shown developmental delay. Rehabilitation training was administered between the ages of one and two. There were no other significant family medical histories. Through comprehensive family exome genetic testing, a hemizygous variant in the 11th exon of the OPHN1 gene was identified in the affected child: c.1025 + 1G > A. Family segregation analysis confirmed the presence of this variant in the patient's mother, which had not been previously reported. According to the ACMG guidelines, this variant was classified as a likely pathogenic variant. In response to this variant, an in vitro minigene functional experiment was designed and conducted, confirming that the mutation affects the normal splicing of the gene's mRNA, resulting in a 56 bp retention on the left side of Intron 11. It was confirmed that OPHN1: c.1025 + 1G > A is the pathogenic cause of X-linked intellectual disabilities in the child, with clinical phenotypes including developmental delay and seizures.

Humans↗

PubMed2006

Mental health, behaviour and intellectual abilities of people with Down syndrome.

The mental health, adaptive behaviour and intellectual abilities of people with Down syndrome (n=129) were evaluated in a population-based survey of social and health care records. Females had better cognitive abilities and speech production compared with males. Males had more behavioural problems than females. Behaviour suggestive of attention deficit hyperactivity disorder was often seen in childhood. Depression was diagnosed mainly in adults with mild to moderate intellectual disability. Autistic behaviour was most common in individuals with profound intellectual disability. Elderly people often showed decline of adaptive behaviour associated with Alzheimer's disease. Case descriptions are presented to illustrate the multitude of mental health and behavioural issues seen from childhood to old age in this population.

Adaptation, Psychological↗

PubMed2005

Historical research: examining documentary sources.

In this paper John Sweeney outlines key principles for conducting a study employing an historical design based on documentary analysis. It derives in part from his PhD study, in which he employs an historical design based on documentary analysis to investigate the delay in introduction of intellectual disability nursing into the Republic of Ireland from 1921 until 1958. This study examines the social, political and professional context to the decision to forgo the recognition of a professional nursing qualification and education process in intellectual disability until 1958.

Documentation↗

PubMedDate not supplied

Analyzing Pennsylvania community residential facilities for individuals with intellectual and developmental disabilities.

Evolving residential requirements for individuals with mild and moderate intellectual disabilities and related developmental disabilities increasingly place these persons in community settings. The increasing numbers of these individuals are dependent upon local practitioners for needed health services. National and Pennsylvania data are reviewed in an effort to provide a general awareness of these community living arrangements, which in turn may assist in the delivery and the follow-up of oral health services.

Adolescent↗

PubMed2000

Predictors of hippocampal, cerebral, and cerebellar volume reduction in childhood epilepsy.

PURPOSE: We examined the factors related to brain volume reduction in a pediatric sample of patients that included those with nonintractable epilepsy. METHODS: Entry criteria were children less than 18 years old with epilepsy referred for MRI, including a whole brain volumetric sequence. The sample size was 231. Risk factors were ascertained from interviews and reviews of medical records. Factors included age of onset, seizure years, family history, status epilepticus, intellectual disability, and febrile convulsions. MRI data were obtained for 44 normal childhood control subjects. RESULTS: Cerebral and cerebellar volumes were significantly associated with age, gender, moderate-to-severe intellectual disability (p < 0.001), seizure years, and status epilepticus (p < 0.03). Compared with controls, the brain volume of all patients was reduced by 10% (p < 0.001). Hippocampal volume was significantly associated with total brain volume, age (p < 0.001), focal cerebral ischemic injury, and complex febrile convulsions (p < 0.05). CONCLUSIONS: Significant brain volume reduction is present in children with epilepsy. A component of this reduction is due to acquired insults. The reduction is seen even in children with infrequent seizures over a brief time, suggesting an innate structural abnormality. When evaluating possible etiologic factors in the development of hippocampal volume reduction, one must control for total brain volume. We have confirmed the association of complex febrile convulsions with unilateral hippocampal volume reduction.

Adolescent↗

PubMed2006

The response to challenging behaviour by care staff: emotional responses, attributions of cause and observations of practice.

BACKGROUND: Previous studies have attempted to apply Weiner's attributional model of helping behaviour to care staff who work with service users with intellectual disabilities and challenging behaviours by using studies based on vignettes. The aims of the current study were to investigate the application of Weiner's model to 'real' service users with intellectual disabilities and challenging behaviours and to observe the care staff's actual responses to challenging behaviours displayed by service users. Also, to compare care staff attributions, emotions, optimism, willingness to help and observed helping behaviours for self-injurious behaviours in comparison to other forms of challenging behaviours. METHOD: A total of 27 care staff completed two sets of measures, one set regarding a self-injurious behaviour and the other regarding other forms of challenging behaviour. An additional 16 staff completed one set of measures. The measures focused on care staff attributions, emotions, optimism and willingness to help. Also, 16 of the care staff were observed interacting with the service users to collect data regarding their responses to challenging behaviours. RESULTS: For both self-injurious behaviours and other forms of challenging behaviour, associations were found between the care staff internal, stable and uncontrollable attribution scores and care staff negative emotion scores. However, no associations were found between the care staff levels of emotion, optimism and willingness to help. Some associations were found between the care staff levels of willingness to help and observed helping behaviours. There were significant differences between the care staff attribution scores with higher scores being obtained for uncontrollable and stable attributions for other forms of challenging behaviours. No significant differences were found between the care staff emotions, optimism, willingness to help and observed helping behaviours. CONCLUSIONS: The results did not provide support for Weiner's attributional model of helping behaviour. However, a preliminary model of negative care staff behaviour was derived from the exploratory analyses completed. This model proposes that there are associations between internal, stable and uncontrollable attributions and negative emotions in care staff and also between negative emotions and negative behaviours displayed by care staff in response to the actions of service users.

Adult↗

PubMed1996

Care dependence and activities of daily living in relation to ageing: results of a longitudinal study.

From 1990 to 1993, the University of Limburg and the Pepijn Centre, the Netherlands, have performed a prospective cohort study on ageing and intellectual disability. The key questions of the study were: "To what degree do the level of care dependence and activities of daily living (ADL) differ between age groups, and to what degree do these skills change during the study period (3 years)? Are the changes age related?'. Looking at the changes in time, the results show that the level of care dependence did not change substantially in the sample of 1602 residents of Dutch facilities for people with intellectual disability. Only the oldest residents (70+ years) showed a significant decline in independence. The results also show that the skills of young people with Down's syndrome (< 40 years) did not change substantially, whereas older people with Down's syndrome (40+ years) showed a substantial decrease in ADL-skills. The ADL-skills of the residents with other aetiological diagnoses younger than 60 years of age did not change substantially, while the older residents (60-69 and 70+ years) showed a significant decrease in ADL-functions. The trend between changes in ADL and age in both aetiological groups was statistically significant. Attention is paid to the implications of these findings in the discussion.

Activities of Daily Living↗

PubMed2026

De Novo 2.2 Mb 19q13.42-q13.43 Microdeletion Encompassing U2AF2: Support for a Haploinsufficiency Model.

U2 small nuclear RNA auxiliary factor 2 (U2AF2) is an essential pre-mRNA splicing factor involved in the early stages of pre-mRNA splicing. To date, multiple individuals have been reported with predominantly heterozygous missense variants presenting intellectual disability, speech and motor delays, seizures, hypotonia, and thin or hypoplastic corpus callosum. Here, we describe a patient with a de novo 2.2 Mb interstitial deletion involving chromosome 19q13.42-q13.43, encompassing U2AF2, presenting with intellectual disability, epilepsy, corpus callosum hypoplasia, dysmorphic features, and congenital heart disease. The patient's clinical features overlap substantially with those reported in individuals harboring heterozygous U2AF2 variants, supporting haploinsufficiency as a plausible disease mechanism. To our knowledge, this represents the first postnatal report of complete U2AF2 gene deletion. In addition, this is the first detailed phenotypic characterization of a distal 19q chromosomal interstitial deletion, further delineating the clinical spectrum associated with this genomic region.

Humans↗

PubMed2002

Collaboration--together we can find the way in dual diagnosis.

Service systems in health and community agencies are struggling to deliver mental health services to adults with an intellectual disability. Many professionals feel ill equipped to assess and treat mental health disorders in this population. This Australian case study describes the collaborative effort required to meet the complex health needs of a client with an intellectual disability and the needs of her family, and the role played by a specialist, Disability Health Service. The key elements of this successful interagency collaboration are outlined and include good communication, adequate resourcing, and a willingness to resolve dynamic tensions and learn from each other.

Diagnosis, Dual (Psychiatry)↗

PubMed1995

Factors affecting age of walking by children with mental retardation.

The relationship between age of walking and two factors of severity of intellectual disability and clinical types (autism, Down syndrome, epilepsy, and "residual") in children with mental retardation was investigated. Subjects were 118 children whose disabilities ranged from severe to mild. Measures by clinical type were significant, and the differences of any two clinical types except between children with epilepsy and the "residual" group were significant, but severity of intellectual disability was not significant. Most children with autism (27 subjects, 93%) walked by the normal time limit of 18 months. Only 3 children (11%) with Down syndrome began to walk within that limit, and 9 of them (33%) walked after 2 years of age. In the "residual" group (including children with epilepsy), 37 children (60%) walked within the normal limit but 15 (25%) only after 2 years of age.

Activities of Daily Living↗

PubMed1994

Assessing the fears of children with disability using the Revised Fear Survey Schedule for Children: a comparative study.

This study compared the self-reported fears of children with disability using the Fear Survey Schedule for Children-Revised (FSSC-R). Children with intellectual disability reported a significantly greater number of fears than children with no disability, children with hearing impairment and children with visual impairment. Also the children with intellectual disability reported more idiosyncratic fears related to the unknown, injury and small animals. Consistent with normative findings (King et al., 1989b; Ollendick, King & Frary, 1989), girls reported significantly more fears than boys. Methodological issues are discussed including the reliability and validity of self-reported fears for children with disability.

Adolescent↗

PubMed1980

Disability and intellectual function in multiple sclerosis patients.

Forty-eight multiple sclerosis patients were rated on the Kurtzke Disability Status Examination and tested on the Wechsler Adult Intelligence Scale. Their disability status scores, ranging from 1 to 9, with a mean of 3.98, correlated significantly only with duration of illness (r = .33, significant at the.05 level). Severity of disability was not significantly correlated with age of patient, age at onset of multiple sclerosis symptoms, Verbal IQ, Performance IQ, or Full Scale IQ. Wechsler Adult Intelligence Scale mean subtest scores ranged from average to bright normal. Scores on Performance subtests with a large motor component were lower than on Verbal subtests measuring verbal overlearned information, abstract reasoning, and vocabulary.

Adolescent↗

PubMed2005

The early development of stereotypy and self-injury: a review of research methods.

BACKGROUND: The origin and developmental course of stereotypic and self-injurious behaviour among individuals with developmental disabilities such as intellectual disability (ID) or pervasive development disorders such as autism is not well understood. METHOD: Twelve studies designed to document the prevalence, nature, or development of stereotypic and/or self-injurious behaviour in children under 5 years of age and identified as at risk for developmental delay or disability were reviewed. Comparisons were made with similar studies with typically developing children. RESULTS: It appears that the onset of naturally occurring rhythmic motor stereotypies is delayed in young at-risk children, but that the sequencing may be similar. A very small database, differences in samples, measures, and designs limited the degree to which comparisons could be made across studies. CONCLUSION: Future work is needed based on appropriately designed prospective comparison studies and uniform quantitative measures to provide an empirical basis for new knowledge about the early development of one of the most serious behaviour disorders afflicting children with ID and related problems of development.

Autistic Disorder↗

PubMed1999

The behavioural phenotype in velo-cardio-facial syndrome (VCFS): from infancy to adolescence.

In this contribution the current status and recent findings of the behavioural phenotype in VCFS (22q11 deletion) are discussed with regard to motor development, cognition and neurodevelopment, and behaviour and temperament. Motor: hypotonia in infancy, gross-motor milestones are delayed, problems with coordination and balance from preschool age on, problems with tempo/speed during adolescence. Cognition and neurodevelopment: learning disabilities (82-100%), intellectual disability (45%), better verbal abilities than performal abilities, poor attention and concentration, visuo-perceptual-spatia problems, good (auditory) memory. An important subgroup of children (55%) has a non-verbal learning disability (NLD). Behaviour and social-emotional development AD(H)D, withdrawn and shy, person-dependent social problems in relationships with peers, anxious, risk for child psychiatric problems as well as for the development of psychiatric problems during adolescence and early adulthood. Information on the behavioural phenotype in VCFS (22q11 deletion) is of great importance to clinicians as an aid to syndrome diagnosis, but even more to parents because it offers immense direct practical value to the management of the behaviour of their child. Appropriate counseling and information on the long-term expectations, and better insight in the behaviour will lead to the development of realistic ways of coping with their child.

Adolescent↗

PubMed2006

An analysis of key principles in Valuing People: implications for supporting people with dementia.

This article reports an analysis of practitioner and policy implementers' views on implementing the strategy document Valuing People. It is based on empirical data generated from the first phase of a research project that seeks to develop best practice in supporting people with an intellectual disability and dementia. The analysis focuses on how Valuing People's four key principles (choice, independence, rights and inclusion) were drawn on and talked about spontaneously by participants. Each of these four principles has important implications for the provision of services for people with intellectual disabilities and dementia. This article adds to the growing dialogue on service provision for this group.

Activities of Daily Living↗