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PubMed2004

Impact of service supply, need, and municipal factors on the use of residential services for people with intellectual disabilities.

We examined the use of residential services for people with intellectual disabilities in Finland from a regional perspective. Our aims were to investigate how service supply and need, as well as municipal factors, impact the use of residential services and to analyze whether the available information in registers and databases can be effectively utilized in studies of this kind. According to the model based on the register data, after age adjustment the most important factors determining service use were service supply, the prevalence of intellectual disabilities, the municipality's level of urbanization, the number of persons granted long-term care as a percentage of all care recipients, and the percentage of middle-class and managerial households in a given municipality.

Finland↗

PubMed2006

Intellectual disability and mental illness in the NSW criminal justice system.

There has been increasing international, national and local recognition of the need for more appropriate responses and services for individuals who come in contact with the criminal justice system and who have an intellectual disability and mental health issues. This article provides an overview of prevalence data that indicates a significant over representation of people with intellectual disabilities in correctional facilities and reviews the problems facing this population. Findings from two specific evaluation studies undertaken by the Centre for Developmental Disability Studies are presented, along with recommendations for future provision based on these results. One of these projects trialled a case management approach to supporting offenders with an intellectual disability upon their release from prison. The 20-month follow-up found that a number of serious barriers were encountered within the overall system of provision for this population; the most serious of which related to lack of adequate accommodation upon release. The second project involved a two-stage evaluation of one model of provision for individuals with intellectual disabilities who are sex offenders, only some of whom were on parole. This service provided both residential and therapy services in a small group home located in the community. Residents were found to have high levels of emotional and behavioural difficulties, in addition to offending behaviour, that continue to require support and supervision. Critical issues, including guardianship involvement, restrictive practices and retrieval, therapy provision, and risk management issues are discussed in relation to overall clinical and lifestyle outcomes.

Adult↗

PubMed2002

People with intellectual disabilities: activities, social contacts and opportunities to exert influence (an interview study with staff).

The aim of this article is to describe the relationship between activities, social network and the possibility of influencing daily lives for about 24 people with intellectual disabilities. The study is based on data collected through interviews with staff at day centres and in group homes and with one relative. The results indicated that several of the people with intellectual disabilities had little or no opportunity to exert influence on choice of activities or social contacts. The study also suggests that if the environment makes it possible for people with intellectual disabilities to make choices, learn social competence and technical know-how and to communicate, it will support the opportunity for choosing activities, participating and influencing. Increased possibilities for communication are one way of changing the balance of power. An important factor for the participants was relatives and contact people, those participants who have these had more variation in their activities and in more different environments. The study shows that it is important to offer different experiences to people with intellectual disabilities in order that they learn to take initiatives and try new things.

Adult↗

PubMed1997

Dental erosions and gastro-oesophageal reflux disease in institutionalized intellectually disabled individuals.

OBJECTIVE: Both exogenous acids, from the diet, and endogenous acids, from stomach juice, can dissolve the enamel mineral, resulting in dental erosions. Gastric acid may reach the mouth by gastro-oesophageal reflux disease (GERD), recurrent vomiting, rumination and regurgitation. These conditions are frequently found in the intellectually disabled population. Therefore, we investigated the presence of dental erosions in combination with GERD among intellectually disabled inhabitants, with an IQ < 50, taken from three Dutch institutes. MATERIALS AND METHODS: At random 63 individuals underwent an oesophageal pH test and dental screening and possible predisposing and attributable factors were determined. An abnormal pH level was defined as a pH < 4, > 4.5% of the measured time. Subjects with dental erosions were compared to those without dental erosions. RESULTS: In 29 out of 63 (46.0%) cases evidence of dental erosions was found. In 19 of these 29 subjects with erosions (65.5%) GERD was diagnosed, compared to nine (26.5%) out of 34 subjects without erosions (P = 0.04). In the subjects with erosions mean duration of pH < 4 was 15.6% (range: 0.5-90.5) compared to 6.3% (range 0-40.4) in subjects without erosions (P = 0.02). An IQ < 35 was found to be predisposing (P < 0.001). CONCLUSION: In this population of 63 institutionalised intellectually disabled persons dental erosions were diagnosed in 46%. Sixty-five per cent of them had GERD. Individuals with longer duration of pH < 4 than 6.3% of the measured time and with an IQ < 35 were at higher risk to develop dental erosions. This study shows that dental erosions in the intellectually disabled population might be an oral manifestation of GERD.

Adolescent↗

PubMed2002

Coping with twins discordant for intellectual disabilities: the mothers' view.

In this exploratory study of 15 families with a twin-pair, of which one has an intellectual disability, the Nijmegen Questionnaire on Childrearing Situations (NQCS) was used to ask mothers about their perceptions and experiences of parenting. An interview with the mothers was done to understand the initial stages of coping with this double problem: educating a twin-pair and a child with an intellectual disability. Four groups of mothers were identified, depending on whether they accepted the intellectual disability of their child and/or whether they perceived their children as a twin-pair or not. Finally, some critical questions for further research and management were formulated.

Adaptation, Psychological↗

PubMed1995

Medical aspects of ageing in a population with intellectual disability: II. Hearing impairment.

Hearing function of an institutionalized population with intellectual disability, consisting of 70 subjects with a mean age of 70.1 (range 60-92) years at initial evaluation, was assessed during a 10-year longitudinal study. One subject had Down's syndrome and could not be assessed as a result of dementia. The total prevalence of mild to severe hearing loss (33.3% in the 60-70 age group and 70.4% in those over age 70) was comparable to reported data from an ageing population without intellectual disability in the United Kingdom (37%, respectively 60%). However, the proportion of moderate to severe losses might be higher (16.7% vs. 7% in the 60-70 age group and 33.3% vs. 18% in the older age group). Excess impairment was caused by severe congenital and childhood hearing impairment on one hand, and by conductive losses, probably caused by unrecognized chronic middle ear infections, superposed upon presbyacusis, on the other. Impacted ear wax was also a major problem. The incidence of new cases with hearing loss during follow-up was 50%. After individual habituation training hearing aids were used without difficulties by 20 out of 24 subjects. The importance of active screening and treatment of middle ear infections and hearing impairment from a young age onwards, and regular cleaning of the external ear canals is stressed.

Aged↗

PubMed1996

Vision care requirements among intellectually disabled adults: a residence-based pilot study.

Intellectually disabled adults have an high incidence of visual problems and they are often unable to communicate their visual difficulties. At Lennox Castle and Waverley Park Hospitals, vision care is through referral by medical and nursing staff to designated optometrists and ophthalmologists. This practice has provided a good service when visual difficulties are noticed. The vision care requirements of all residents had not been comprehensively assessed and a new interdisciplinary procedure developed at Waverley Park Hospital had drawn attention to the fact that only 11% had been offered vision assessment within the previous 5 years. In this study, 63 residents without specific referral received a comprehensive visual and medical assessment. The residents ranged from age 20 to 85 years and included the full range of disabilities. Objective assessments, ophthalmoscopy and retinoscopy were generally successful for all levels of disability. Visual acuity and visual fields were tested using methods suitable for nonverbal subjects. Success rates for these subjects were generally good, except in the profoundly disabled group where less than 30% were able to respond. A high prevalence of visual impairment, refractive error, squint and other ocular conditions was found. Visual impairment was most common in the severe and profoundly disabled groups because of optic nerve or cortical dysfunction. New spectacles were recommended for 23 residents (seven others had adequate correction). Nine residents were referred for ophthalmologic consultation, mainly for cataract. Three required monitoring for visual conditions. Thirty-one residents (49%) required no immediate action beyond documentation of the visual status. This study has shown a high prevalence of visual difficulties which were not previously detected. Routine biennial vision assessment of all residents is recommended to allow timely intervention to correct vision problems, and also to provide the necessary information about vision to plan appropriate programmes of activity.

Adult↗

PubMedDate not supplied

Depression: its trajectory and correlates in mothers rearing children with intellectual disability.

BACKGROUND: Rearing a child with an intellectual disability (ID) is a lifelong activity, and research needs to reflect the extended nature of the task as well as its complexity. The present longitudinal study reports on an 11-year follow-up of adoptive and birth families rearing children with ID. Its focus was on depressive symptoms and how these changed over time in a sample of 187 mothers. In particular, the authors were interested in whether initial differences in depression between adoptive mothers who knowingly and willingly decided to rear their children with disabilities, and birth mothers for whom the diagnosis of disability was unexpected and frequently crisis-inducing, would persist over time. METHODS: A longitudinal method with three times of measurement provided data which were analysed with analysis of variance and regression techniques. Moreover, several other individual and family adjustment measures were examined with respect to their correlations with depression and an outcome variable that measured subjective well-being with regard to the child. Furthermore, mothers were classified as typical or atypical for their adoptive/birth group based on their depression scores at the first time of measurement. The authors predicted that later depression would be different based on the earlier scores. RESULTS: Both adoptive and birth mothers reported low depression, not significantly different from each other, at the 11-year follow-up. The personality variable of neuroticism was the strongest predictor of depression for both adoptive and birth mothers, accounting for 24% and 23% of the variance, respectively, but it did not predict the mother's subjective well-being with regard to the child. Mothers classified as typical or atypical for their groups at initial measurement continued to report significantly different depression scores 11 years later. CONCLUSIONS: The low depression scores, not significantly different for birth and adoptive mothers, portray the long-term prognosis for adjustment to rearing children with disabilities as primarily positive. Moreover, the predictive value of neuroticism suggests that general mental health is an important component influencing this adjustment. Nevertheless, a different pattern for a different outcome variable suggests that multiple measures are necessary to portray accurately the complexity of reaction over time.

Adult↗

PubMed2005

Supporting patients who have intellectual disabilities: a survey investigating staff training needs.

AIMS: This article reports on a small exploratory survey aimed at establishing the perceived training needs of palliative care staff related to supporting people with intellectual disabilities. METHODS: Questionnaires were collected from a sample of 46 palliative care staff. Respondents were asked to describe 'worrying issues' about supporting a person with intellectual disabilities. Answers were analysed using content analysis. RESULTS: Most respondents (37, 80%) highlighted communication as a concern. Other major issues included assessment and symptom control, patient comprehension, empowerment and ethical issues/consent. DISCUSSION: Communication and symptom assessment can be challenging, particularly in people with limited verbal communication skills. Palliative care staff need to be aware of the range of communication methods used by people with intellectual disabilities. CONCLUSION: There is a lack of information and training materials around intellectual disabilities for palliative care staff. This needs to be addressed. More work is needed to develop appropriate training in this area.

Attitude of Health Personnel↗

PubMed2003

Olanzapine for self-injurious, aggressive, and disruptive behaviors in intellectually disabled adults: a retrospective, open-label, naturalistic trial.

BACKGROUND: The effectiveness of olanzapine in treating challenging behaviors in the intellectually disabled and its ability to substitute for conventional antipsychotic drugs were evaluated. METHOD: A total of 20 institutionalized adults with a mean age of 42.7 years (range, 18-55 years) with intellectual disability and aggression, self-injurious behavior, destructive/disruptive behavior, or combinations of these behaviors were studied. These individuals were receiving multiple psychotropic medications at baseline and were given additional treatment with the atypical antipsychotic agent olanzapine. The mean dose of olanzapine was 9.1 mg/day (range, 2.5-22.5 mg/day). Effectiveness was determined by retrospective review of the summaries of quarterly neuropsychiatric behavioral reviews and retrospective review of longitudinal behavioral graphs of target symptoms. Data were collected from 1995 to 2000. RESULTS: A significant decrease in global challenging behaviors and specific target behaviors (i.e., aggression, self-injurious behaviors, destructive/disruptive behaviors) occurred (p <.05). A numerical decrease in the dosage of concurrent conventional antipsychotic medications occurred over the course of the first 6 months of olanzapine therapy, and a statistically significant (p <.005) decrease from the start of olanzapine therapy occurred in those subjects who received olanzapine for longer than 6 months (mean = 20.3 months). A significant increase in weight occurred in the subject group during the first 6 months of olanzapine treatment (p <.006), and sedation and constipation were the other common side effects noted. CONCLUSIONS: Olanzapine was found to be effective in the treatment of challenging behaviors in the intellectually disabled and in part could be substituted for administration of conventional antipsychotic drugs.

Adolescent↗

PubMed1997

Classification, prevalence, prevention and rehabilitation of intellectual disability: an overview of research in the People's Republic of China.

The People's Republic of China is a developing country with all the problems and challenges that face such countries all over the world. Progress has been hampered by scarcity of resources, and a lack of relevant information and appropriate skills, as well as by the stigma traditionally attached to people with intellectual disability. The present rapid economic development has made possible further improvement and expansion of educational opportunities, and health and rehabilitation services. According to a recent census and sample surveys conducted in the People's Republic of China, the overall prevalence rate of people with disabilities was estimated to 4.9%. Thus, China has more individuals with disabilities than any other country in the world. According to these figures, the prevalence of intellectual disability in the population is approximately 1%. For children younger than 14 years of age, the prevalence is around 2%, which accounts for 66% of all handicapped children, making it the most frequent childhood disability. Today, the existing medical facilities, and educational and social welfare organizations cannot meet the tremendous need of care and services. The problems of the large number of disabled children and adults are a major challenge for contemporary Chinese society. This paper is devoted to research pertinent to intellectual disability in China. With a few exceptions, only publications in the English language were included in this review, which makes the overview selective rather than comprehensive. Publications on classification systems and diagnostic criteria, screening methods and assessment instruments, prevalence rates, aetiology and risk factors, prevention and intervention efforts, special education, and families with children with intellectual disability are presented.

Adaptation, Psychological↗

PubMed2006

Locus of control and sex offenders with an intellectual disability.

Locus of control has been implicated as an important construct that is related to treatment outcome for several groups of offenders, including sexual offenders. However, little attention has been paid to how this construct is related to sexual offending by people with intellectual disabilities. Given this, 41 participants with intellectual disabilities were recruited into three groups: sex offenders who had undergone psychological treatment, sex offenders who had no history of treatment, and nonoffenders. All participants completed measures of locus of control and distorted cognitions. There was a significant difference between those who had and had not completed treatment in terms of cognitive distortions relating to sexual offending. There was no significant difference between the three groups on the measure of locus of control, with all three groups endorsing an external locus of control. Three possible explanations for how locus of control relates to sexual offending by people with intellectual disabilities is explored and discussed.

Cognition↗

PubMed2004

[Etiology and bronchofiberscopic treatment of pulmonary atelectasis in patients with severe motor and intellectual disabilities].

Atelectasis is a common respiratory complication in patients with severe motor and intellectual disabilities. We encountered 3 patients with irreversible atelectasis due to delayed therapy, emphasizing the necessity of performing flexible bronchofiberscopy. A total of 21 patients with atelectasis were studied to assess the etiology and efficacy of bronchofiberscopy. The underlying condition was bronchitis/pneumonia in 19 cases, tracheal hemorrhage in 1, and lung cancer in 1. Most of the patients had predisposing factors, such as a bedridden status in 90% and a weak or absent cough reflex in 81%. It was statistically suggested that atelectasis is likely to occur on the side contralateral to thoracic scoliosis. Among the 18 patients who underwent bronchofiberscopy within 2 weeks after the diagnosis of atelectasis, 16 (89%) showed recanalization and resultant improvement of respiratory failure. Bronchofiberscopy is useful for treating atelectasis in patients with severe motor and intellectual disabilities.

Adolescent↗

PubMed2006

Comparison of reports by relatives and staff on living conditions of adults with intellectual disabilities.

Proxies typically serve as information providers in studies of persons with intellectual disabilities. However, little is known about the concordance between different proxy categories and how proxy characteristics influence the information provided. We compared 89 pairs of relative and staff reports on the living conditions of persons with intellectual disabilities, using percentage agreement and Cohen's kappa statistics. Results demonstrate differences between relative and staff reports for most of the domains investigated, with moderate agreement for objective items and fair agreement for subjective items. Relative and staff proxies contributed different information related to diverse viewpoints and varying types of information. Thus, we suggest that information provided by proxies should not be treated as being interchangeable but, rather, as complementary.

Activities of Daily Living↗

PubMed2005

Health status, utilization patterns, and outcomes of persons with intellectual disabilities: review of the literature.

A literature review was conducted to analyze existing data on health status, health care utilization, and medical outcomes of persons with intellectual disabilities. We found that barriers exist, but evidence indicates that (a) individuals with intellectual disability and medical needs are living in the community, (b) people with significant medical conditions can be maintained in community settings, and (c) medical supports can and are provided to people with intellectual disabilities and allied medical conditions to enable community living. However, some people had unmet medical needs, and the availability of and access to community-based services were problematic for others. These contradictory findings indicate that it is possible to provide services in the community, but the service delivery system needs improvement.

Adult↗

PubMed2005

Relapse prevention with intellectually disabled sexual offenders.

The adaptation of relapse prevention theory to sexual offending (W. D. Pithers, J. K. Marques, C. C. Gibat, & G. A. Marlatt, 1983) has represented an important movement in cognitive-behavioural treatment for sexual offenders. However, this model of relapse prevention has been criticised for its limited view and oversimplification of the relapse prevention process (R. K. Hanson, 2000; T. Ward & S. M. Hudson, 1996). As a result, T. Ward and S. M. Hudson (2000a) have developed a multiple pathway model of the relapse prevention process based on self-regulation theory. Although this model continues to be empirically validated on sexual offenders (J. A. Bickley & A. R. Beech, 2002; T. Ward, S. M. Hudson, & J. C. McCormick, 1999), there has been no empirical research regarding the application of this theory to intellectually disabled sexual offenders. This paper discusses whether the characteristics of offenders in each of the relapse offence pathways, as described by T. Ward and S. M. Hudson (2000a), may be similar to the characteristics of intellectually disabled sexual offenders. From a review of the literature, it appears that the intellectually disabled sexual offender may be most likely to offend via the approach-automatic pathway or the avoidant-passive pathway. The potential treatment implications of the self-regulation model for intellectually disabled sexual offenders is discussed, as well as the need for empirical evaluation with regards to the application of this model to the intellectually disabled sexual offender population.

Behavior Therapy↗

PubMedDate not supplied

The assessment of emotional distress experienced by people with an intellectual disability: a study of different methodologies.

The assessment of emotional disorders such as anger, depression and stress among people with an intellectual disability has traditionally used one of three methodologies: ratings by a significant other, a clinical interview or self-report. Despite the widespread use of all three methodologies, there is little research into their equivalence. This paper assesses the convergence among these three approaches for 147 people with a mild or moderate intellectual disability across the affective domains of anger, depression and stress. The results showed the overlap among the three methods to be consistently low, although limited convergence was found between self-report and clinical interview. Ratings by work supervisors discriminated least clearly between anger, depression and stress while self-report was the most discriminating between these three overlapping but conceptually distinct states. Suggestions are made for ongoing research into the methodologies of assessing affective states among people with an intellectual disability.

Adolescent↗

PubMed2006

Sexuality and people with intellectual disabilities: assessment of knowledge, attitudes, experiences, and needs.

The topic of sexuality and romantic relationships of people with mild to moderate intellectual disabilities was examined. We developed a questionnaire to investigate the 76 respondents' sexual knowledge, attitudes, experience, and needs. During the interviews, observational data were gathered to check the validity of the instrument. Results show that sexuality and romantic relationships are important aspects in the lives of many persons with intellectual disabilities. Male respondents generally reported more sexual needs than did females. Correlations were found between sexual knowledge and attitudes and between attitudes and experience or needs, suggesting that general behavioral models may be fruitfully used to further explore the topic of sexuality among people with intellectual disabilities.

Adolescent↗