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PubMed2003

The palliative care needs of people with intellectual disabilities: a literature review.

People with intellectual disabilities are among the most disadvantaged groups in society. A literature review was conducted aiming to answer the following question: What are the palliative care needs of people with intellectual disabilities? The literature review covers case histories, morbidity and mortality patterns for people with intellectual disabilities, their healthcare needs and primary care provision, the way they may present symptoms, their conceptualization of illness and death and issues around education and training. While the literature review reveals a lack of empirical data around the palliative care needs of people with intellectual disabilities, a number of potential problem areas are highlighted. These include late presentation of illness, difficulties in assessing symptoms, difficulties in understanding the illness and its implications and ethical issues around decision making and consent to treatment. It is suggested that future studies will need to include the views and experiences of people with intellectual disabilities themselves. Areas for possible future development include symptom assessment, evaluation of current practice and access to services and the development of information and training materials.

Adult↗
PubMed2006

Vitamin D and fractures in people with intellectual disability.

BACKGROUND: People with intellectual disability (ID) are thought to be at an increased risk of fractures. The extent of this increase in risk has been incompletely documented in the literature, and the underlying reasons remain to be elucidated. METHODS: The aims of our study were to document the vitamin D status and fracture incidence in an intellectually disabled population, to test for associations between vitamin D status and possible risk factors for reduced vitamin D levels, and to determine the efficacy of oral vitamin D supplementation in restoring appropriate vitamin D levels in those found to be vitamin D insufficient. A 5-year retrospective audit of fractures in 337 individuals with ID receiving health care at a residential facility was performed. Data analysed included age, gender, mobility, dietary status, incident fractures, medications and 25-hydroxyvitamin D levels. Vitamin D insufficient individuals received oral vitamin D supplementation, and had repeat testing to assess treatment efficacy. RESULTS: In total, 57% of individuals tested were found to be vitamin D insufficient. Vitamin D insufficiency was strongly correlated with reduced mobility (P < 0.001) and difficulty with consuming solids (P < 0.001). However, the correlation between vitamin D levels and fractures was not significant (P = 0.3). Oral vitamin D supplementation using cholecalciferol (vitamin D3) 100,000 IU every 4 months was effective in correcting vitamin D insufficiency. Sixty-eight fractures occurred over the study period in 52 individuals, a rate of 1 fracture every 23.8 person years. A total of 55% of these fractures involved the extremities. Fractures were more common in men than in women. Peripheral fractures (hand, foot, wrist, ankle) accounted for 54% of all fractures, and were particularly prevalent in the most mobile individuals. CONCLUSIONS: Fractures and vitamin D insufficiency are relatively common in people with ID. This study did not find a significant association between vitamin D insufficiency and fractures in the study population. Oral vitamin D supplementation is effective in restoring normal vitamin D levels, and should be considered routinely for those at the highest risk.

Adult↗
PubMed2002

Psychiatric disorders in children with intellectual disability.

We investigated psychiatric disorders in intellectually disabled children; the prevalence rate and types of psychiatric disorders, and the association of psychiatric disorders with sex, residence type, level of disability, and epilepsy were examined. The population comprised 155 intellectually disabled children. Medical information was obtained from case files, which indicated that a psychiatric disorder had previously been diagnosed for 11% of patients. A careful re-examination of the case files revealed a psychiatric disorder for 33%. The criteria of a psychiatric ICD-10 diagnosis were fulfilled by 23%, and a further 10% had an unspecified mental disorder. The most common diagnoses were pervasive developmental disorders and hyperkinetic disorders. The former were less common among children with mild intellectual disability. In conclusion, about one-third of children with intellectual disability have a psychiatric disorder which needs to be taken into account in treatment.

Adolescent↗
PubMed2003

Health needs of adults with intellectual disability relevant for the family physician.

People with developmental disability, mental retardation, or intellectual disability are living longer and becoming prone to age-related health problems and diseases of old age much like the general population. This worldwide trend is also seen in Israel, where today 39.8% of persons with intellectual disability in residential care are 40 years old and above. There is a need for service and staff providers to receive training; a need for more research and better service for this aging population. This review presents health concerns for older persons with different levels of intellectual disability, health concerns in persons with Down syndrome, and persons with epileptic seizures and cerebral palsy in relation to general practice and family medicine. The review is concluded with recommendations on health and aging in adults with intellectual disabilities and the call for formalized training in the topic for specialists in family medicine.

Adult↗
PubMed1999

Using self-instructional pictorial manuals to teach child-care skills to mothers with intellectual disabilities.

Children of parents with intellectual disabilities (i.e., IQs less than 80, labeled as having mental retardation) are at risk for neglect due to inadequate parenting abilities. Previous studies have shown that these parents are responsive to parent-training packages consisting of instructions, pictorial cues, modeling, feedback, and reinforcement. This study evaluated the effectiveness of self-learning pictorial-parenting manuals in teaching basic child-care skills (diapering, treating diaper rash, bathing, safety) to parents with intellectual disabilities who are monitored by child protection agencies. The manuals alone increased child-care skills (to levels seen in parents without disabilities) in 9 out of the 10 mothers in the study and in 12 of 13 child-care skills. The remaining skill was acquired with the full training package. Follow-up indicated that the acquired skills were maintained for up to 3 years. Mean correct performance with the manual was positively correlated with the trainer's rating of the mother's reading level and acceptance of the manual when the mother was first given the manual. Consumer satisfaction ratings of the manuals were high. These results indicate that many parents with intellectual disabilities may improve their child-care skills without intensive training and that self-instruction may be an easily disseminable and cost-effective way of reducing the risk of child neglect due to parenting skill deficiencies.

Child Abuse↗
PubMed2004

Symptoms of ADHD and their correlates in children with intellectual disabilities.

Existing research suggests that children with intellectual disabilities are at increased risk for ADHD, and that the symptoms of the disorder might successfully be treated with stimulant drugs. However, there has been little exploration of ADHD symptoms and their correlates in children with intellectual disabilities. Analyses of three samples of children with intellectual disabilities are presented (total N=338). Correlational analyses showed that younger children, and those with a diagnosis of Autism were rated as having more ADHD/hyperactivity symptoms. There was little evidence of a sex difference, and no strong associations with domains of adaptive behavior (socialization, communication, and daily living skills). However, there was a small but significant negative association between mental age and ratings of symptoms. Finally, an increased prevalence of ADHD/hyperactivity symptoms was confirmed in the children with intellectual disabilities compared to their siblings. This effect remained after controlling for chronological and mental age differences between the siblings. These findings support those from previous research and suggest that ADHD/Hyperkinesis may be a valid psychiatric diagnosis for children with intellectual disabilities. However, a great deal more research is needed to explore the phenomenology of ADHD in intellectual disability and to develop an evidence base for psychosocial intervention.

Adolescent↗
PubMed2006

Visual imagery scanning in young adults with intellectual disability.

Fifteen young adults with intellectual disability and 17 college students learned the locations of 5 landmarks on an island map and then scanned from one landmark to another. In the perception condition, the landmarks were visible; in the imagery condition, they were not. The rate of scanning over distance was similar for perception and imagery conditions, but overall scan times were slower in the imagery condition. Participants with intellectual disability required slightly more trials to learn the landmark locations and had generally slower scan times. Both groups were identical in rate of scanning for both perception and imagery conditions. Results suggest that persons with intellectual disability have no particular deficit in image inspection and, perhaps, relatively good imagery capacities.

Adolescent↗
PubMed2006

Psychopathology in young people with intellectual disability.

CONTEXT: Comorbid severe mental health problems complicating intellectual disability are a common and costly public health problem. Although these problems are known to begin in early childhood, little is known of how they evolve over time or whether they continue into adulthood. OBJECTIVE: To study the course of psychopathology in a representative population of children and adolescents with intellectual disability. DESIGN, SETTING, AND PARTICIPANTS: The participants of the Australian Child to Adult Development Study, an epidemiological cohort of 578 children and adolescents recruited in 1991 from health, education, and family agencies that provided services to children with intellectual disability aged 5 to 19.5 years in 6 rural and urban census regions in Australia, were followed up for 14 years with 4 time waves of data collection. Data were obtained from 507 participants, with 84% of wave 1 (1991-1992) participants being followed up at wave 4 (2002-2003). MAIN OUTCOME MEASURES: The Developmental Behaviour Checklist (DBC), a validated measure of psychopathology in young people with intellectual disability, completed by parents or other caregivers. Changes over time in the Total Behaviour Problem Score and 5 subscale scores of the DBC scores were modeled using growth curve analysis. RESULTS: High initial levels of behavioral and emotional disturbance decreased only slowly over time, remaining high into young adulthood, declining by 1.05 per year on the DBC Total Behaviour Problem Score. Overall severity of psychopathology was similar across mild to severe ranges of intellectual disability (with mean Total Behaviour Problem Scores of approximately 44). Psychopathology decreased more in boys than girls over time (boys starting with scores 2.61 points higher at baseline and ending with scores 2.57 points lower at wave 4), and more so in participants with mild intellectual disability compared with those with severe or profound intellectual disability who diverged from having scores 0.53 points lower at study commencement increasing to a difference of 6.98 points below severely affected children by wave 4. This trend was observed in each of the subscales, except the social-relating disturbance subscale, which increased over time. Prevalence of participants meeting criteria for major psychopathology or definite psychiatric disorder decreased from 41% at wave 1 to 31% at wave 4. Few of the participants (10%) with psychopathology received mental health interventions during the study period. CONCLUSION: These results provide evidence that the problem of psychopathology comorbid with intellectual disability is both substantial and persistent and suggest the need for effective mental health interventions.

Adolescent↗
PubMed2005

[Written language and intellectual disability].

AIMS: Following the diagnosis of intellectual disability, a prognosis can be offered concerning the degree of autonomy the child will be able to achieve based on prior experience, but which depends on the aetiology of the disability. It is still difficult to give a prospective answer regarding the capacity to reach an operative level of written language. The goal of being able to offer an experience-based prognosis involves prior analysis of how learning dysfunctions are approached in the disabled population. DEVELOPMENT: Although we have an increasingly deeper understanding of the neurocognitive foundations of specific learning difficulties and the careful neuropsychological management of children with disorders affecting the acquisition of written language with a typical intellectual level, those with intellectual disability continue to be treated using a simplistic approach in which their intelligence quotient is still taken as the most relevant feature. Little attention is paid to neuropsychological aspects, the pedagogical and social environment or comorbid aspects that may affect the acquisition of the function. Yet, these are aspects that are submitted to thorough evaluation in children who are not disabled. CONCLUSIONS: The current concept of intellectual disability has gone beyond the definition based on the intelligence quotient. The wide variability in the reading function in children with intellectual disability cannot be explained only according to a psychometric assessment. A more complete neuropsychological approach, as carried out in the population with no disability, will enable us to detect cognitive, pedagogical, social and pathological dysfunctions that interfere with the acquisition of written language.

Learning Disabilities↗
PubMed2000

Cerebral dominance and schizophrenia-spectrum disorders in adults with intellectual disability.

Studies of the general population without intellectual disability have suggested an association between atypical handedness and schizophrenia-spectrum disorders (SSDs). Mixed handedness is taken as an index of diminished cerebral dominance or laterality. The present study addressed the question of whether such findings extend to the neurodevelopmentally 'at risk' population of adults with intellectual disability and SSDs compared with appropriate controls. Fourteen patients with a dual diagnosis of intellectual disability and SSD were compared with 14 controls with intellectual disability alone. Assessments of self-reported hand preference and relative hand skill were completed. Self-report of hand preference revealed highly significantly greater mixed-handedness in the SSD group. Furthermore, relative hand skill performance was significantly diminished for the dominant hand. The discrepancy between dominant and non-dominant hand functioning was lower in the SSD group and this association was highly significant. The results of the present study support the usefulness of such detailed laterality assessment in this population. Mixed laterality, over and above that of the population with general intellectual disability and developmental disorder, was associated with SSD. These results are consistent with the neurodevelopmental hypothesis of schizophrenia and its cognitive neuropsychiatric/neuropsychological sequelae.

Adult↗
PubMed2004

Retreat and resilience: life experiences of older women with intellectual disabilities.

Older women with intellectual disabilities remain the least studied and understood members of the disability population, and yet they often live well into late adulthood. In this exploratory study we used extensive interviews to examine the demographics, economic and personal safety nets, health, social roles, and well-being of 29 Irish and American older women with intellectual disabilities. Results suggest that these women have very limited resources, social networks, and opportunities. All the women were poor and most lived in group residences, with paid staff as their main allies and careproviders. They reported that their health was good, though it often limited their activities. Despite their societal limitations, these women reported this is the happiest period of their lives.

Aged↗
PubMed1997

Attitudes of general practitioners towards health care for people with intellectual disability and the factors underlying these attitudes.

An intellectual disability attitude questionnaire was used to explore the attitudes of general practitioners (GPs) towards primary health care, organizing health promotion and the role of specialist services for people with intellectual disability. The results of this questionnaire from GPs in Gwent (Wales) and GPs in west Gloucestershire (England) were compared. The GPs in both areas responded similarly and tended to agree that they were responsible for the medical care of people with intellectual disability in the community. They also tended to feel that the move from hospitals to the community of people with intellectual disability would greatly increase their workload. The GPs in both areas were generally against a responsibility on their part for health promotion and health screening initiatives for people with intellectual disability. However, GPs in west Gloucestershire felt more strongly against these issues. Further analysis of the data revealed factors which influenced the response of GPs to the questionnaire, including their position regarding health promotion and screening, and their view of the role of specialist health services. The GPs generally felt that community learning disability teams provided useful support, and there is clearly scope for team members to liaise more closely with GP practices and to provide helpful information to GPs about intellectual disability and the specialist health services available. Professionals seeking to work collaboratively with GPs should be sensitive to their workload pressures and to their attitudes towards health promotion initiatives and health screening.

Adult↗
PubMed2002

Environmental, medical, behavioural and disability factors associated with Helicobacter pylori infection in adults with intellectual disability.

In institutionalized adults with intellectual disability (ID), Helicobacter pylori infection occurs at approximately twice the rate it appears in the general population, and it may be responsible for the twofold higher rates of peptic ulcer disease and gastric cancer in this population. Medical, behavioural and additional environmental factors, as well as level of ID, may be related to the risk of infection with H. pylori. One hundred and sixty-eight adults with ID who were currently, had previously been or had never been institutionalized underwent a biopsychosocial evaluation. This included assessment of: level of ID using the Adaptive Behaviour Scale (ABS) Part I; levels of maladaptive behaviour using the ABS Part II; demographic, medical and environmental factors; as well as H. pylori tests using serology and faecal antigen. The overall rates of past or current infection with H. pylori in institutionalized and previously institutionalized participants were about twice that of the overall group of never-institutionalized participants, i.e. 87% and 79% compared to 44%, respectively (P < 0.001). The rates of H. pylori infection appeared to increase with age in the never-institutionalized group, but were consistently high across all ages in the other groups. The rate of infection was higher in those institutionalized for more than 5 years (95% versus 76%, P=0.02), in those with flatmates with excessive oral secretions (65% versus 21%, P < 0.001) or faecal incontinence (67% versus 27%, P < 0.001), and in those with more chronic illness and medications. All mean domain scores of the ABS Part I (Intellectual Disability) were significantly lower (indicating more severe ID) in the group currently infected with H. pylori compared to their non-infected counterparts. The majority of mean domain scores of the ABS Part II (Behaviour) were also worse, with half of these score differences reaching statistical significance in the currently infected group. The presence of alarm symptoms (e.g. vomiting, weight loss, haematemesis and melena), iron deficiency and body mass index were not significantly different in currently infected subjects. Adults with ID appear to be particularly at risk of infection with H. pylori. Environmental associations with infection include past or current institutionalization, a longer period of institutionalization, living with flatmates with excessive oral secretions and faecal incontinence. Medical associations include chronic disease and more medications, but not alarm symptoms or body mass index. Demographic associations may include increasing age in never-institutionalized adults, but no age effect in currently or previously institutionalized individuals. Psychosocial associations include more severe ID and maladaptive behaviour with current infection.

Adaptation, Psychological↗
PubMed2005

People with intellectual disabilities and their need for cancer information.

Many people with intellectual disabilities will be affected by cancer in their lifetime. There is a lack of available knowledge about people with intellectual disabilities' understanding and experience of cancer, and about their need for cancer information. The principal aim of the study was to explore the information needs of people with intellectual disabilities who are affected by cancer. This was a qualitative, hypothesis generating study. Nine people with intellectual disabilities who were affected by cancer were identified using a purposive sampling method; five of these participated in the study. Data collection included observation of the use of a pictorial cancer information book designed for people with intellectual disabilities, and semi-structured interviews. Data analysis revealed three themes: (1) "Nobody told me": the desperate need for cancer information; (2) "That reminds me": telling my own story; and (3) "I don't know much about cancer": the difficulties of the staff supporting people with intellectual disabilities to read the cancer information book. The people with intellectual disabilities in this study were not provided with information about cancer. They wanted this information, and appeared to be capable of comprehending it. Further development of accessible information materials around cancer and palliative care is needed.

Adult↗
PubMed2000

Intellectual disability in Western Australia.

OBJECTIVE: To investigate the prevalence of intellectual disability in Western Australia (WA), its causes, prevention, and trends over time. METHODOLOGY: Data from an administrative database of intellectual disability in WA were used to report on the trends in intellectual disability in childhood. RESULTS: The prevalence of intellectual disability was 8.3 per 1000 live births in 1980-90. For half the cases, there was no known cause for the intellectual disability. Down syndrome accounted for 14 to 15% of all cases. Since the introduction of newborn screening, no WA-born child participating in the screening program has been diagnosed with intellectual disability as a result of either phenylketonuria or congenital hypothyroidism. The rate of autism spectrum disorders rose from three to six per 10 000 in the 1980-83 WA birth cohort to 10-13 per 10 000 for the 1989-92 cohort. CONCLUSIONS: Recent linkage of this administrative database to the WA Maternal and Child Health Research Data Base provides a unique opportunity for more detailed investigation of intellectual disability and its risk factors in a large, well-ascertained population of children.

Autistic Disorder↗
PubMed1999

Parental scaffolding of the discourse of children and adolescents with intellectual disability: the case of, referential expressions.

Individuals with intellectual disability find the process of establishing referents to be an especially challenging component of discourse. The present study was designed to examine whether these problems partly result from a failure of parents to appropriately scaffold the discourse participation of individuals with intellectual disability. Children and adolescents with intellectual disability and their parents participated in two dyadic non-face-to-face referential tasks which afforded parents an opportunity to scaffold their children's behaviour as speaker and as listener. Comparisons were made with parents and their typically developing children who completed the same tasks. It was found that the parents of individuals with intellectual disability scaffolded their children's discourse participation to the same extent, as effectively and in the same manner as the parents of the typically developing children. The former were also found to adjust their scaffolding according to their children's level of behavioural competence. In summary, there is no evidence that parents contribute to the referential problems of individuals with intellectual disability.

Adolescent↗
PubMed2000

Predictors of admission to a high-security hospital of people with intellectual disability with and without schizophrenia.

Admission to secure hospital facilities is a rare outcome for people with intellectual disability with or without concomitant psychosis. The present study compares people with mild intellectual disability with and without schizophrenia resident in the Scottish and Northern Irish State Hospital, Carstairs, to matched mild intellectual disability controls, also with and without schizophrenia, in the community. It is hoped that this study may identify socio-demographic, clinical or historical predictors which may lead to admission to secure hospital facilities for people with mild intellectual disability. One hundred and eight subjects were identified from two previous studies which concerned State Hospital patients and patients with intellectual disability with and without schizophrenia. Four experimental groups were derived: (1) 14 individuals with comorbid intellectual disability and schizophrenia who had been resident in the State Hospital; (2) 34 comorbid community control subjects; (3) 33 individuals with intellectual disability and no psychosis who had been resident in the State Hospital; and (4) 27 community control subjects with mild intellectual disability. The four groups were compared on a range of socio-demographic, historical and clinical variables obtained from case records and subject interviews. Relative to community controls, people with intellectual disability and no psychosis in the State Hospital are likely to be single, to have a later age of first psychiatric hospital admission, and to have a history of previous suicide attempts, alcohol abuse or drug misuse. Subjects with comorbid intellectual disability and schizophrenia in the State Hospital are more likely to be male, to have an early age of first psychiatric admission, and to have no family history of either schizophrenia or intellectual disability. Strategies aimed at addressing suicidal behaviour, alcohol and drug misuse amongst people with intellectual disability may facilitate a reduction in the number of admissions to high-security hospitals in the UK. In people with comorbid intellectual disability and schizophrenia, males with an early age of onset and no known family history are more likely to require care and treatment in a secure psychiatric setting. Such comorbid subjects may be suffering from a particular malignant form of schizophrenia, manifesting in childhood as cognitive impairment prior to the early onset of psychosis in teenage years.

Adolescent↗
PubMed2003

Primary health care for adults with intellectual disability.

BACKGROUND: In recent decades people with intellectual disability have moved from institutional care into the community and are now reliant on general practice services for their primary medical care. Their complex health needs present a considerable challenge to the general practitioner. OBJECTIVE: This article aims to outline the common physical and psychiatric conditions found in adults with intellectual disability, and the need for a structured approach to health care in patients with limited communication skills. DISCUSSION: Adults with intellectual disability frequently have undiagnosed health problems. In many cases these will only be identified by specific examination and testing. Health assessment tools offer a useful guide to which conditions to look out for. Early identification and treatment enhances quality of life for both people with intellectual disability and their carers.

Adult↗