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PubMed1994

Gynaecological care for women with intellectual disability.

Optimal gynaecological care for women with intellectual disability is complex. Many of these women suffer unique problems with regard to menstrual hygiene, sexuality, contraception and susceptibility to sexual abuse. Complex medical, ethical, social and legal issues must be carefully considered to address these problems. We discuss the "gynaecological" management of intellectually disabled women, with particular reference to contraception and menstrual suppression. We advocate endometrial ablation as an alternative to hysterectomy for women with intractable menstrual problems. Some ethical issues are reviewed which must be addressed to determine which approach is in the patient's "best interest" and adopts the "least restrictive option". Finally, we present Federal and State laws governing informed consent for medical procedures for women and children with intellectual disabilities.

Adult↗
PubMed2003

Prevalence of epilepsy and associated health service utilization and mortality among patients with intellectual disability.

We considered the prevalence of epilepsy and associated health service utilization for a population with intellectual disability. Registers for epilepsy and intellectual disability were created using a range of datasets. Of 1,595 people with an intellectual disability, 257 (16.1%) had epilepsy. Standardized activity ratios were 3.07 (95% CI 3.00 to 3.15), 2.03 (95% CI 1.94 to 2.11), and 3.09 (95% CI 2.78 to 3.41) for inpatients, outpatients, and accident and emergency, respectively. After excluding epilepsy-related inpatient admissions, we found the standardized activity ratio was 2.55 (2.48 to 2.62). Institutionalized patients were less likely to be admitted than were those in the community (standardized activity ratio = 0.63 (95% CI 0.54 to 0.73). Patients with intellectual disability and co-existing epilepsy used secondary care services more frequently than did those with intellectual disability only.

Adolescent↗
PubMed2006

The relationship between food refusal and social skills in persons with intellectual disabilities.

BACKGROUND: Feeding problems are common among individuals with intellectual disabilities. The aim of the current study was to determine the relationship between food refusal and social skills in people with intellectual disability. METHOD: The Screening Tool of Feeding Problems (STEP) was administered to all residents of a large developmental centre. This screening tool identified 82 residents who exhibited food refusal, and 81 residents who did not exhibit food refusal. The Matson Evaluation of Social Skills in Persons with Severe Retardation (MESSIER) was administered to the 163 participants. RESULTS: People who exhibited food refusal displayed significantly more negative nonverbal and general negative social skills when compared to controls. Food refusal was prevalent across all ages, genders, and levels of intellectual disability. CONCLUSIONS: As social skill deficits are associated with deficits in feeding skills, social skills training should be considered as a major component of behavioural interventions targeting food refusal in people with intellectual disability.

Adult↗
PubMedDate not supplied

CBCL in the assessment of psychopathology in Finnish children with intellectual disability.

Structured checklists have been used to supplement psychiatric assessment of children with normal intelligence, but for children with intellectual disability, only a few checklists exist. We evaluated the Child Behavior Checklist (CBCL) in the assessment of psychopathology in Finnish children with intellectual disability. The CBCL was completed by parents or other carers of 90 children aged 6-13 years. Of the 118 CBCL problem items, the lowest scores were for 'Suicidal talks' and 'Alcohol, drugs', and the highest score for 'Acts too young'. Total Problem, Internalizing, and Externalizing scores were highest among children with moderate intellectual disability and lowest among those with profound intellectual disability. Externalizing scores were significantly higher among children with mild or moderate intellectual disability than among those with severe or profound intellectual disability. Compared with the original normative samples, Total Problem scores were higher in the present study. With a T-score cut-off point of 60, the rated frequency of psychiatric disorders was 43%. We conclude that, despite certain limitations, the CBCL can be used in the assessment of psychopathology among children with mild intellectual disability but is less reliable for those with moderate, severe, or profound intellectual disability.

Adolescent↗
PubMed2004

ask for it: development of a health advocacy intervention for adults with intellectual disability and their general practitioners.

Two per cent of people in Australia have intellectual disability and the adults in this population often have poor health status. This poor health can be partly attributed to communication difficulties encountered by people with intellectual disability and also health professionals in consultation settings. The design and development processes of an educational intervention to improve communication between patients, general practitioners (GPs) and also advocates in a population of adults with intellectual disability are described. The design process was collaborative and involved adults with intellectual disability, GPs, parents, support workers and other professionals. It was a nine-step development process and led to the final communication tool package, the ask (advocacy skills kit) 5-year health diary and educational session. As a result of the collaborative design and development processes, this diary included qualities not found in most other medical record keeping systems: visual appeal, advice on how to be a health advocate, utility for a range of users, privacy, portability and sufficient capacity to record personal patient information which enhanced communication between doctor, patient and advocate. It is proving to be very popular. Clear implications were found for applying established criteria and incorporating the needs of users in the design of educational interventions in the intellectually disabled population. Health promotion tools aiming to improve the current poor health status of adults with intellectual disability should be developed further.

Adult↗
PubMed2006

Aripiprazole use in individuals with intellectual disability and psychotic or behavioural disorders: a case series.

People with intellectual disabilities may be at greater risk of developing movement disorders as a consequence of their underlying neurological damage, especially when they are treated with typical antipsychotic agents. Aripiprazole is a novel antipsychotic quinolone derivative that has been approved for the treatment of schizophrenia in adults. However, there are few reports on the use of aripiprazole in people with intellectual disabilities. Herein, we report on the use of aripiprazole in five individuals with intellectual disabilities and psychotic illness (four cases) or challenging behaviour (one case). Four of the five patients had an additional diagnosis of schizophrenia and one had autism spectrum disorder and challenging behaviour. Issues related to the usefulness of aripiprazole in the management of schizophrenia and challenging behaviour in people with intellectual disabilities are also discussed. Aripiprazole was well tolerated and effective in each of the cases and appears to be a safe and efficacious alternative in the management of patients with both intellectual disabilities and schizophrenia. It can also be a useful treatment option in the management of challenging behaviour, especially when it is used as a part of a biopsychosocial approach.

Adolescent↗
PubMed1997

Schizophrenia in people with intellectual disability: the role of pregnancy and birth complications.

The literature suggests that mental illness is more common in people with intellectual disability than in the general population. Having reviewed the literature, Turner (1989) [Psychological Medicine 19, 301-14] suggested that about 3% of people with intellectual disability also have schizophrenia. As pregnancy and birth complications (PBCs) occur more commonly in people with intellectual disability than in the general population and are also implicated in the aetiology of schizophrenia, it is possible that these conditions share a common aetiology. This study reports on the occurrence of PBCs in those people with intellectual disability who develop schizophrenia. Fifty people with intellectual disability and schizophrenia were matched for age, sex, degree of intellectual disability and presence of epilepsy with a control group who did not suffer from schizophrenia or a schizophreniform psychosis. The obstetric history was obtained and events rated on a scale specifically designed for this study. This PBCs scale consists of six sub-scales covering areas of general maternal health, pregnancy, delivery, medication in labour, total medication score and neonatal score, as well as an overall total score. The study found that people with intellectual disability who develop schizophrenia have significantly higher rates of PBCs than controls. All of the sub-scales on the PBCs scale were significantly higher in people with schizophrenia, with the exception of the medication scales. Only five out of the 50 people with schizophrenia had not had a major obstetric complication, compared to 13 subjects from the control group. A number of abnormalities were specifically higher in people who later developed schizophrenia. These included: abnormally long or short labour; maternal episiotomy; maternal preeclamptic toxaemia; induction of labour; dysmaturity; maternal smoking in pregnancy; and a delay in neonatal crying. The results suggest that PBCs are important in the aetiology of schizophrenia in people with intellectual disability.

Adult↗
PubMed2006

Caring for adults with intellectual disabilities: perceived challenges for nurses in accident and emergency units.

AIM: This paper reports a study exploring the experiences of nurses in accident and emergency units caring for people with intellectual disabilities. BACKGROUND: People with intellectual disabilities are increasingly in contact with healthcare professionals in accident and emergency units. Often this contact occurs within the accident and emergency service, an area in which staff care for a diverse range of people. The experiences of people with intellectual disabilities within acute general hospitals in the United Kingdom and internationally has largely been reported as quite negative. Conversely, little is known about the experiences of nurses working in acute general hospitals, nor the exact nature of any challenges they encounter, in providing care to people with intellectual disabilities. This lack of understanding weakens opportunities for nurses to reduce barriers to providing an equitable service for people with intellectual disabilities. METHOD: Five focus groups were conducted with 27 accident and emergency nurses from five hospitals in Northern Ireland in the spring of 2004. The data were then coded and recurring themes identified. FINDINGS: This paper focuses on two themes: lack of knowledge of the nature of intellectual disability and dependence on carers. Whilst these themes have been acknowledged in the existing literature, they have received limited attention and exploration. The experience of fear and vulnerability was considered by participants to be a consequence of their lack of knowledge. The experience of these emotions is viewed as a key factor in nurses' over-dependence on patients' informal carers. CONCLUSION: Increased awareness is needed among professionals in accident and emergency units of the abilities and needs of people with intellectual disabilities.

Adaptation, Psychological↗
PubMed2005

Self-reported smoking and alcohol use among adolescents with intellectual disabilities.

Self-reported smoking and alcohol use were examined among 95 adolescents (aged 11-15) with intellectual disabilities and 4069 adolescents who did not have intellectual disabilities. Results indicated that adolescents with intellectual disabilities reported increased rates of smoking and decreased rates of using alcohol at least once a month. There were no marked differences between the two groups on smoking seven or more cigarettes a day, having ever smoked at all and having ever used alcohol. Elevated levels of smoking appeared to be an artefact of increased rates of poverty among adolescents with intellectual disabilities. Distinct patterns of risk were associated with smoking and alcohol use among adolescents with intellectual disabilities. Smoking was closely associated with the experience of poverty and adolescent mental health. Alcohol use was associated with less punitive child management practices and carer mental health. Results are discussed in the context of health promotion.

Adolescent↗
PubMed1999

Newborn infants and the moral significance of intellectual disabilities.

This article presents moral philosophical arguments regarding life-saving medical treatment that may be more available to infants without disabilities than to infants with intellectual disabilities. The ideas are that children with disabilities are a burden to their families and to society and that a happy life may not be attainable for these children and their families. I argue that human well-being is not based merely on individual characteristics, but is a result of the individual's relation to other people. Further, children with disabilities are not inevitably a burden to their families or society. Accordingly, intellectual disability is not a sufficient reason for withholding life-saving treatment.

Children with Disabilities↗
PubMed1993

Cognitive therapy for depression with individuals with intellectual disabilities.

The increase in research into psychopathology in people with intellectual disability has recently spread to include depression. Several reports have appeared on the assessment of depression in the client group and there is a pressing need for research into treatment of depression in people with intellectual disability. The present paper reviews cognitive behaviour therapy for depression and reports on its adaptation for people with intellectual disability. Two case studies of individuals with mild intellectual disability illustrate the clinical applications. All the elements of cognitive behaviour therapy for depression were maintained and simplified. Both subjects were able to monitor their feelings of depression and subject 2 monitored the frequency of suicidal thoughts. Improvements were seen in both cases on the Zung Depression Inventory and daily monitoring of depressive feelings.

Adult↗
PubMed2006

Sexual health care in persons with intellectual disabilities.

In the past, preventive health concerning sexuality of people with intellectual disabilities was addressed through surgical sterilization as part of nationwide eugenic programs in many countries. For more than 30 years now, it has come progressively to light in the scientific literature that, besides major ethical and legal problems, these programs also failed to assess many of the individual's needs in sexual health. The fact that an increasing number of people with intellectual disabilities live in the community rather than in institutions has heightened public awareness that these individuals have sexual expectancies, desires, and needs that must be supported through both education and health services. The emergence of AIDS, including descriptions of cases among people with intellectual disabilities, has further demonstrated that surgical sterilization cannot be considered a global option to achieve preventive sexual health. The aim of this paper is to review scientific studies that have assessed the expectancies and support needs of persons with intellectual disabilities in terms of sexual health. These needs vary widely from one individual to another, according to life milieu, level of disability, and potential comorbidity. From this review, it appears that hygiene management, global gynecological care, and prevention of unplanned pregnancy, sexually transmitted diseases, and abuse have been frequently identified as areas in which the presence of intellectual disability dictates specific support needs. Different approaches that have been evaluated to address these issues will also be discussed.

Acquired Immunodeficiency Syndrome↗
PubMed2005

Intellectual disability, challenging behaviour and cost in care accommodation: what are the links?

The paper examines the links between degree of intellectual disability, challenging behaviour, service utilisation and cost for a group of people with intellectual disabilities living in care accommodation in England. A cross-sectional survey was conducted of people with intellectual disabilities, identified via provider organisations, with supplementary collection of costs data. Multivariate analyses of cost variations were carried out for 930 adults with intellectual disabilities. There were strong, nonlinear, interdependent links between degree of intellectual disability, behaviour, service use and costs. Higher costs were associated with more severe intellectual disabilities and more challenging behaviour. Sector and scale of residence also influenced cost in quite complex ways. Access to and use of services by people with intellectual disabilities were not always appropriately linked to perceived or actual needs. Policy makers and local commissioning agencies need to explore the sources of cost variation between individuals, sectors and types of accommodation in order to achieve national policy objectives on quality, choice, independence and inclusion.

Adolescent↗
PubMed2002

Working memory performance in children with and without intellectual disabilities.

Performance on working memory span tasks by children with intellectual disabilities ages 11 to 12 was compared to that of CA- and MA-matched controls. Limited evidence was available to support a "difference" position, whereby the intellectual disabilities group obtained lower scores than both the CA and MA groups. Some evidence was found for the "developmental" position, whereby the intellectual disabilities group performed at the same level as the MA group but more poorly than the CA-matched group. Finally, some evidence supported an unconventional "difference" account; children in the intellectual disabilities group performed better than the MA group, although still not as well as the CA-matched group. Results were interpreted with reference to the role of strategies in working memory performance.

Child↗
PubMed2006

Effects of repeated listening experiences on the recognition of synthetic speech by individuals with severe intellectual disabilities.

PURPOSE: To examine the perception of synthetic speech by individuals with severe intellectual disabilities using a closed-response format task. METHOD: Participants were 14 individuals with severe intellectual disabilities and a group of 14 typical individuals. A between-groups design was used to compare the performance of the 2 groups on word identification accuracy and word latency tasks. Data were analyzed using a repeated measures design. RESULTS: The results indicated that the performance of a group of individuals with severe intellectual disabilities was significantly poorer (p<.05) than that of typical individuals on the word identification task. Data analyzed for practice effects indicated that individuals with severe intellectual disabilities demonstrated a significant reduction (p<.01) in their word latency scores across sessions. Furthermore, there was an absence of significant effect (p>.01) of stimulus type (i.e., repeated vs. novel), indicating that individuals with intellectual disabilities are able to generalize their knowledge of the acoustic-phonetic properties of synthetic speech to novel stimuli. CONCLUSIONS: This study indicates that persons with severe intellectual impairments become more proficient at recognizing synthetic speech as a result of repeated exposure to it. These results have significant clinical implications for people who use speech-generating devices.

Acoustic Stimulation↗
PubMed2004

Offenders with intellectual disability: a prospective comparative study.

BACKGROUND: Intellectually disabled offenders (IDO) are a poorly served and under-recognized group, who are likely to require long-term specialist treatments and interventions. METHOD: This prospective study investigated the characteristics and factors that influence outcome in this group, with particular reference to therapeutic interventions. Sixty-one individuals were identified from contact with either (1) specialist health and social services for people with intellectual disability (ID) or (2) nonspecialist services in the criminal justice or (forensic) mental health/social service systems. The participants were assessed at baseline and after a mean of 10 months in order to compare recidivism rates and the impact of therapeutic interventions. RESULTS: The findings suggest that IDO start offending at an early age, that they frequently have a history of multiple offences, and that sex offending and arson are over-represented offence types. Those participants recruited from nonspecialist ID services had significantly higher IQs and were less likely to have had contact with community social and health support agencies. Despite the high rates of psychopathology, there was little evidence for efficacy of therapeutic interventions, which, where offered, appeared to be of a nonspecific nature. At second interview, approximately half of the sample had re-offended.

Adult↗
PubMed2005

Conscious sedation for the performance of gynecologic examination of individuals with intellectual disability.

OBJECTIVE: Gynecologic examination of some individuals with intellectual disability can be especially problematic. Many of these women reside in a community setting and a widely applicable method for performing these examinations is desirable. METHODS: Intellectually disabled women were referred by their primary care providers for gynecologic examinations under sedation in the emergency room facility of a community hospital. Intravenous conscious sedation was administered under the direction of an emergency room physician. RESULTS: Thirteen adult women underwent 22 examinations over a four-year period. Papanicolau smears, screening for sexually transmitted disease and cervical and endometrial biopsies were obtained without complications. Hospital charges were relatively low and lengths of stay were short. CONCLUSION: In selected individuals with intellectual disability, intravenous conscious sedation in a community hospital emergency room setting provides a safe, effective and relatively inexpensive means for performing gynecologic examinations.

Adult↗
PubMed2005

The relationships among three factors affecting the financial decision-making abilities of adults with mild intellectual disabilities.

BACKGROUND: Among adults with intellectual disabilities (IDs), there is a need not only to assess financial decision-making capacity, but also to understand how it can be maximized. Although increased financial independence is a goal for many people, it is essential that individuals' decision-making abilities are sufficient, and many factors may affect the development of such abilities. METHOD: As part of a wider project on financial decision-making, we analysed previous data from a group of 30 adults with mild IDs, identifying correlations among four variables: (i) financial decision-making abilities; (ii) intellectual ability; (iii) understanding of some basic concepts relevant to finance; and (iv) decision-making opportunities in everyday life. RESULTS: The analysis indicated a direct relationship between ID and basic financial understanding. Strong relationships of a potentially reciprocal nature were identified between basic financial understanding and everyday decision-making opportunities, and between such opportunities and financial decision-making abilities. CONCLUSIONS: The findings suggest that the role of intellectual ability in determining financial decision-making abilities is only indirect, and that access to both basic skills education and everyday decision-making opportunities is crucial for maximizing capacity. The implications of this are discussed.

Adolescent↗