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PubMed2001

Depression in mothers and fathers of children with intellectual disability.

Parental depression was assessed using the Beck Depression Inventory (BDI) in 216 families with children with autism and/or intellectual disability (ID), and in 214 control families. Mothers with children with autism had higher depression scores (mean = 11.8) than mothers of children with ID without autism (mean = 9.2), who in turn, had higher depression scores than fathers of children with autism (mean = 6.2), fathers of children with ID without autism (mean = 5.0), and control mothers (mean = 5.0) and fathers (mean = 4.1). Forty-five per cent of mothers with children with ID without autism and 50% of mothers with children with autism had elevated depression scores (BDI > 9), compared to 15-21% in the other groups. Single mothers of children with disabilities were found to be more vulnerable to severe depression than mothers living with a partner.

Adolescent↗

PubMed2005

Applying the developmental perspective in the psychiatric assessment and diagnosis of persons with intellectual disability: part I--assessment.

BACKGROUND: In generic psychiatry there has been increasing interest among scientists for the developmental perspective. However, professionals active in the mental health care of people with intellectual disability (ID) have not shown the same degree of interest. The author of this article, who has had a liberal amount of rewarding experiences with the developmental approach in the field of ID, considers the developmental perspective to be innovative and very useful in psychiatric assessment, diagnosis and treatment of this population. The aim of the article is to stimulate a wider application of the developmental perspective as well as to challenge a professional discussion on this issue. METHODS: Basic assumptions of the developmental perspective are discussed and assessment tools and methods are described. RESULTS: In a case vignette, the advantages of developmentally based assessment are emphasized. Emotional development and personality development are viewed as the developmental components that play an important role in adaptive and maladaptive behaviour as well as in the onset and presentation of psychopathology. It is clear that interpretative insight into the totality of the psychosocial aspects of these individuals cannot only be obtained by measuring the level of cognitive development. A wider frame of mind is needed for unambiguous psychiatric diagnostics. Therefore, a replacement of the three dimensional paradigm (bio-psycho-social) by a four dimensional one (bio-psycho-socio-developmental) for the assessment and diagnosis of persons with ID is proposed.

Adult↗

PubMed2001

Cancer incidence among people with intellectual disability.

The aim of the present study was to address the unresolved question of the risk of neoplasms among people with intellectual disability (ID). A total of 2173 individuals with ID from a large, representative, nation-wide population study conducted in Finland in 1962 were followed-up for cancer incidence between 1967 and 1997. Standardized incidence ratios (SIRs) were defined as ratios of observed to expected numbers of cancer cases. Expected rates were based on national incidence rates. The observed number of cancers in the cohort (173) was close to what was expected [SIR = 0.9, 95% confidence interval (95% CI) = 0.8-1.0]. There was a significantly reduced risk of cancers of the prostate (SIR = 0.2, 95% CI = 0.0-0.5), urinary tract (SIR = 0.3, 95% CI = 0.1-0.7) and lung (SIR = 0.6, 95% CI = 0.4-1.0). The risk was increased in cancers of the gallbladder (SIR = 2.8, 95% CI = 1.1-5.8) and thyroid gland (SIR = 2.1, 95% CI = 1.0-4.8). The risks of lung and gallbladder cancer were lowest and highest, respectively, in those subjects with profound and severe ID, a group who also had significantly elevated SIRs for brain cancer (SIR = 3.46, 95% CI = 1.5-14.4) and testicular cancer (SIR = 9.9, 95% CI = 1.2-35.6). The incidence of cancer among people with ID was comparable with the general population, despite their low prevalence of smoking and apparently decreased diagnostic screening activity. Nevertheless, a few types of cancer carry a higher risk in the population with ID, possibly because of conditions typical among this group, such as gallstones or oesophageal reflux.

Adolescent↗

PubMed2005

[Tracheostomy for home-care patients with severe motor and intellectual disabilities].

We discuss here the indication and complications of tracheostomy performed in 57 home-care pateints with severe motor and intellectual disabilities (SMID) during the past 13 years at our hospital. Thirty-five cases underwent tracheostomy following emergency endotracheal intubation for acute respiratory failure. Recently, the number of cases without preceding endotracheal intubation have increased. Many patients underwent tracheostomy at the age of 1 to 4 years and 10 to 14 years. The quality of life (QOL) of almost all the patients without preceding intubation markedly improved, as well as that of their families, and they were able to return to home. The most decisive reason for tracheostomy was secretions and recurrent aspiration pneumonia in 8 patients, gastroesophageal reflux in 4 and upper airway obstructions in 3. Several complications of tracheostomy were observed: tracheal granulations in 9 patients, tracheal malacia in 8, and tracheoinnominate artery fistula in 5. Among 8 patients with tracheal malacia, bleeding from the tracheoinnominate artery fistula occurred in 3. In 7 patients, self-made long tracheostomy tubes were necessary for the initial management of the tracheal malacia or tracheal granulations. Subsequently, made-to-order long tracheostomy tubes were used in three of these patients. In 12 patients, improved endotracheal T-tube with the tip sealed on the vocal cord side was used to prevent aspiration. Home-care SMID patients with respiratory disturbance require tracheostomy timely performed, followed by careful observation to prevent postoperative complications.

Adolescent↗

PubMed2004

An exploratory study into health care policy for persons with intellectual disabilities in Taiwan.

BACKGROUND: Although Taiwan has already had a higher quality of health care compared with other countries, there still is a need to review the quality and effectiveness of services provided. The lack of health care policy for persons with disabilities is a reflection of health care provision in Taiwan. Health care provision problems will limit persons with disabilities in their access to the health care system. The purpose of the present study was to examine the general beliefs about the current health care policies for persons with intellectual disabilities (ID) in Taiwan. METHODS: Data were obtained from two sources, namely government policies analysis and interviews with representatives for key stakeholders in the field of ID. RESULTS: The results illustrate that health care service problems for persons with ID include: how to enforce the discovery system and early intervention service, disability evaluation system, National Health Insurance medical payment and medical care resource development are still confining their quality of care. Furthermore, the links between social welfare, education and health care have been lost because the different roles and perspectives of people in these fields are fundamentally at odds with one another. Health care professionals have become less reform-minded as a consequence of the conditions of their work. Consequently, a complete and coordinated health care policy for persons with ID has become unattainable in society. The present paper draws on evidence from research and policies to explore the problems and potential of service development for persons with ID, and to identify review and action points for managing its implementation.

Health Policy↗

PubMed2000

BIOMED-MEROPE project: service provision for adults with intellectual disability: a European comparison.

The aim of the present paper is to describe and compare services for adults with intellectual disability (ID) and mental health needs in five European countries: Austria, England, Greece, Ireland and Spain. A framework and structure for collecting information about service provision was designed. This information was collected through a mixture of interviews with service providers, questionnaires and a review of the research literature within each country. Information was collected on historical context, policy, legislation, assessment, treatment and the structure of services for people with ID and mental health problems. Overall, the needs of those with additional mental health needs have not been specifically addressed at a national level with perhaps the exception of England and Ireland, although there are still gaps in services in these nations. Normalization has been adopted in each of the five countries, and there are moves toward deinstitutionalization, integration and inclusion. Families and self-advocacy groups have grown. The pace of this change varies between and even within countries. The main findings of the study include: unclear policy, trends for legislative changes, increased prevalence of mental health problems, inadequate generic service provision, a need for specialist mental health services, a need for improved interconnections of services, and a need for training developments. Policy and legislation in the five European countries under consideration tend to separate the disability aspects of people with ID from their mental health needs. Consequently, the service needs of this group remain largely invisible. This might be a direct reflection of policy clarity and legislation, or could be the result of a failure to implement existing guidelines. This has a detrimental effect on the lives of people with ID, and their families and carers.

Adult↗

PubMed2006

Psychiatric symptoms and problem behaviours in people with intellectual disabilities.

BACKGROUND: Previous studies have suggested different patterns of associations between psychiatric symptoms and problem behaviours in people with intellectual disabilities (ID). The aim of this study was to investigate which problem behaviours are associated with specific psychiatric symptoms and the relative strength of these specific associations. METHOD: A cross sectional survey using the Psychiatric Assessment Schedule for Adults with Developmental Disabilities Checklist and the Disability Assessment Schedule was carried out in a sample of 214 adults with ID. RESULTS: Self-injurious and, to a lesser extent, aggressive problem behaviours were most associated with affective type symptoms. Screaming and destructive behaviours tended to be more associated with autism-related social impairment rather than conventional psychiatric symptoms. CONCLUSIONS: This study gives further evidence of associations between psychiatric symptoms and specific problem behaviours in people with ID. It may be particularly useful to consider the diagnosis of affective disorders if a person with ID shows self-injurious or aggressive behaviours.

Adult↗

PubMed2000

Changes in skills for people with intellectual disability: a follow-up of the Camberwell Cohort.

The skills of a total population of children with severe intellectual disability and/or autism from Camberwell, South London, UK, and the initial follow-up data, taken when the subjects were adolescents and young adults (Shah 1986), are described in the present study. Changes in skills over time are presented within the categories of communication, self-care, and educational and cognitive skills, as assessed by the Handicaps, Behaviours and Skills schedule. The results indicated that skills had improved in many areas between times 1 and 2, but that this improvement was more noticeable for the children who had been youngest at time 1. The implications of these results and predictions for a further follow-up study are discussed.

Adolescent↗

PubMed2001

A comparison of physical and sexual abuse: histories of sexual and non-sexual offenders with intellectual disability.

OBJECTIVES: To review patterns of physical and sexual abuse in cohorts of sexual offenders and nonsexual offenders with intellectual disability. METHOD: Forty-six sexual offenders were compared with 48 male nonsexual offenders in relation to their experiences of sexual and physical abuse in childhood. Comprehensive assessments were taken over a period of at least one year, and were conducted independently by a range of professionals. RESULTS: Thirty-eight percent of the sexual offenders and 12.7% of the nonsexual offenders had experienced sexual abuse, while 13% of the sexual offenders and 33% of the nonsexual offenders had experienced physical abuse. CONCLUSIONS: Sexual abuse seems a significant variable in the history of sexual offenders, while physical abuse seems a significant variable in the history of nonsexual offenders. The results support the view that the "cycle of abuse" is neither inevitable nor an adequate explanation of future offending.

Adolescent↗

PubMed2006

Quality of life among people with epilepsy and mild intellectual disabilities in residential care.

This study examined quality-of-life (QOL) evaluations among people with epilepsy and mild intellectual disabilities in residential care to determine their covariation and potential determinants. Participants were 111 clients of the Bethel Institute, Bielefeld, Germany. They completed questionnaires on their overall QOL and life satisfaction, the PESOS scales on epilepsy-related QOL, the Brief Symptom Inventory (BSI), and scales on activities of daily life and work-related problems in face-to-face-interviews. QOL evaluations differed in the various domains and tended to be better on more concrete items. Correlations of generic QOL parameters with scales on epilepsy-related QOL were only weak. BSI scores reflecting the current emotional state were identified as the most influential predictors of all QOL measures. The weak relationship between non-health-related parameters of subjective QOL and epilepsy-related QOL requires further investigation and theoretical explanation, whereas the influence of negative affect on different QOL dimensions is in line with previous QOL findings.

Adult↗

PubMed2006

Multiple exposure to life events and clinical psychopathology in adults with intellectual disability.

BACKGROUND: Relatively few studies have examined the impact of life events on mental health in the field of intellectual disability (ID), despite the possibility that adults with ID and mental health problems might be particularly vulnerable to multiple events. AIMS: To examine the impact of multiple life events on mental health in people with ID. METHOD: The sample consisted of 281 men and women with ID consecutively referred to a specialist mental health service in South-East London. For each participant, key informants completed the PAS-ADD Life Events list, while psychiatric diagnoses were made by clinicians based on ICD-10 criteria. RESULTS: Logistic regression analysis revealed that single exposure to life events was significantly associated with female gender, schizophrenia, personality disorders and depression. However, multiple exposure to life events was associated with personality disorder, depression and adjustment reaction. CONCLUSIONS: The present results suggest an increased vulnerability to life events in people with ID. A better understanding of the relationship between life events and mental health can enhance the development of interventions, which may benefit substantially this particular population.

Adolescent↗

PubMed2004

Occurrence of mental health problems in Swedish samples of adults with intellectual disabilities.

OBJECTIVE: The aim of this study was to investigate the occurrence of mental health problems in adults with intellectual disabilities (ID) and the number of adults with ID receiving care at general mental health clinics. METHOD: The Reiss Screen for Maladaptive Behaviour and the Psychopathology Inventory for Mentally Retarded Adults were used to investigate mental health problems in samples from two Swedish counties. Adults with ID receiving psychiatric care at general mental health clinics were investigated via the mental health services register in one county. RESULTS: The overall occurrence of mental health problems in adults with ID ranged from 34% to 64%. The most common mental health problems were aggressive, self-injurious behaviours, signs of depression, anxiety or adjustment problems. The occurrence of adults with ID among patients receiving out- or in-patient psychiatric care was approximately 1%. Between 70% and 90% of these persons had a mild level of ID. CONCLUSION: The overall occurrence of mental health problems was similar to reported overall figures in comparable studies conducted in the US, UK and Denmark. The number of adults with ID registered for out- or in-patient psychiatric care was low compared with the occurrence of mental health problems based on the screening results.

Adult↗

PubMed2002

Urine amino and organic acids analysis in developmental delay or intellectual disability.

OBJECTIVES: To determine the proportion of urine amino and organic acids screening tests (UMS) undertaken for patients referred with developmental delay or intellectual disability (DD/ID), and within the group with DD/ID, to determine the diagnostic yield, the proportion of diagnoses with a therapy and the associated recurrence risks. METHODS: A retrospective review of request forms and results of UMS, in individuals older than 28 days, referred to the Women's and Children's Hospital, North Adelaide, between 1 January 1992 and 31 December 1998 was carried out. Urine was analysed by ion exchange chromatography (amino acids), gas chromatography/mass spectrometry (organic acids), colorimetric assay (orotic acid) and stable isotope-dilution mass spectrometry (trimethylamine). RESULTS: A total of 3316 samples were received, 1447 being from patients with DD/ID. A diagnosis was determined for 1.8% of all referrals. For patients with DD/ID, the diagnostic yield was 1.1%, with a similar yield for isolated DD/ID and DD/ID with other features (9/828 vs 7/619; chi2 = 0.006; P = 0.93). Specific therapies were available for 69% of diagnoses associated with DD/ID and 87.5% had known Mendelian or mitochondrial inheritance. CONCLUSION: Urine metabolic screening is an important part of the evaluation of children with DD/ID as it can enable families to make reproductive decisions and children to receive appropriate therapy early.

Amino Acids↗

PubMed2005

Health issues and quality of life in women with intellectual disability.

BACKGROUND: Although there is anecdotal evidence of an increase in both period pain and premenstrual syndrome (PMS) in women with intellectual disabilities (ID), there are only brief mentions of it in the literature. METHOD: Questionnaires were distributed to parents of women with Down syndrome (DS) or Autism Spectrum Disorder (ASD), resulting in 24 respondents from Australia and New Zealand. The purpose of the study was to ascertain how period pain and PMS presents in women with ID. RESULTS: Results were analyzed by disability group, and communication ability. Women with DS were more often able to state that they had pain, or point to the location of the pain than women with either autism or Asperger Syndrome (AS). Additionally, women with DS or ASD appeared to have a higher rate of period pain than women in the general population, but the presence of pain more often had to be deduced from behavioural changes. CONCLUSION: Further research with a larger number of women with disability, and across a wider range of disabilities is required to determine generalizability of these findings.

Adolescent↗

PubMed2002

Responses of staff towards people with mild to moderate intellectual disability who behave aggressively: a cognitive emotional analysis.

BACKGROUND: Traditionally, research into interactions between staff and adults with an intellectual disability who engage in challenging behaviour has been carried out within a behavioural paradigm. Recent work has begun to examine cognitive factors. The majority of this research has drawn upon Weiner's attributional model of helping behaviour. Moreover, staff responses have usually been investigated in relation to client vignettes of challenging behaviour. METHOD: The present study involved 38 staff who worked with frequently aggressive clients and its aims were twofold: (1) to compare different methods of examining the cognitive and emotional responses of staff to aggression; namely, descriptive vignettes and real incidents of aggression which staff could recall; and (2) to attempt to replicate previous findings supportive of Weiner's model with a new carer group (day centre staff). RESULTS: When staff responses were compared across the hypothetical and real scenarios, using a series of one-way analyses of variance, it was revealed that staff experienced more negative emotions in response to the real incidents of aggression. The present study produced little evidence in support of Weiner's model. However, it was found that staff perceptions of the aggressive clients were linked to their cognitive and emotional responses to the aggression. CONCLUSION: The theoretical and clinical implications of these findings are considered, and the possible role played by interpersonal attributions in mediating staff responses to aggression is discussed.

Adult↗

PubMed2006

A prospective analysis of life events, problem behaviours and depression in adults with intellectual disability.

BACKGROUND: Life events have consistently been found to be associated with behaviour problems and depression among individuals with intellectual disability (ID). However, prior findings have typically been based on correlational or retrospective analyses of case files. The current study attempted to replicate prior findings from life events with concurrent data and extend them to the prospective prediction of behaviour problems and depression. The influence of impact ratings of life events was also explored. METHODS: Seventy-four informants rated 104 adults with ID on measures of life events, behaviour problems and depressive symptoms. Life events were rated as having either a positive, negative or no impact on the life of the individual with ID. Measures were completed twice, at a 4-month interval. RESULTS: Behaviour problems were both correlated with and predicted by frequency counts of life events and life events perceived as negative. However, the predictive ability depended on which measure of problem behaviour was selected. Positive life events were not associated with concurrent behaviour problems. Depressive symptoms were correlated with all life changes, but only predicted by frequency counts of life events and life events perceived as negative. Again, the predictive ability depended on which measure of depression was selected. Findings were corroborated with a group of individuals with clinical diagnoses of major depression. CONCLUSIONS: Frequency counts of all life events and life events perceived as negative play a role in the development of behaviour problems and depressive symptoms among adults with ID. The results have implications for interventions for behaviour problems following a life event, and for reducing depressive symptoms for adults with mild ID.

Adult↗

PubMed2003

Healthcare needs of people with intellectual disability in institutions in Taiwan: outpatient care utilization and implications.

BACKGROUND: The present study assessed the outpatient care use of people with intellectual disability (ID) in order to identify patterns of healthcare needs and the factors affecting this utilization. METHODS: The primary method used in this study was a cross-sectional survey of 1390 subjects with ID in Taiwan. Data were obtained from questionnaires completed at 30 registered institutions caring for people with ID. RESULTS: The findings show that people with ID in Taiwan are likely to make more outpatient visits per year than members of the general population. The prevalence of illness in people with ID was 41%, with epilepsy being the most frequently reported disease. A total of 39.5% of individuals with ID took medicine regularly, and 38.9% had used alternative forms of medication besides Western medicine. In terms of the use of outpatient facilities by people with ID, paediatric clinics were the most frequently utilized. The average monthly number of outpatient visits per person with ID was 2.18 (around 26 visits per year). This study found that the need for outpatient care is determined by a variety of factors relating to: the age of people with ID, the type of handicap, the place of medical treatment, having a family physician, the accessibility of medical care, the time-consuming nature of the medical visits, having an illness, ID accompanied with other disabilities, and finally, a need for rehabilitative care. CONCLUSIONS: From the examination of the expressed needs of people with ID, it was found that these individuals have a heightened need for healthcare and the treatment of special diseases/disorders in comparison to members of the general population in Taiwan. Within the context of ordinary services, it is particularly important to have a precise view of the ways in which the health needs of people with ID are different from the general population as a whole. This will enable healthcare services to respond to these needs, either through support systems within generic care or, in some cases, through the delivery of specific healthcare through specialized services which are kept separate from generic care.

Adolescent↗

PubMed2006

Prevalence of maltreatment of people with intellectual disabilities: a review of recently published research.

Maltreatment can have a profound adverse effect on the health of individuals with intellectual disabilities (ID). People with ID may also be more likely to experience maltreatment than other groups. Historically, data on prevalence of maltreatment among people with ID have been sparse and methodologically weak but have suggested that the scope of the problem is considerable. Studies published between 1995 and 2005 were reviewed to determine estimated maltreatment prevalence among people with ID based on recent literature. Prevalence estimates for people with ID were compared to estimates for people with no disabilities and people with other types of disabilities. Only five studies provided maltreatment prevalence estimates for people with ID. The limited data suggest that maltreatment is more prevalent for people with ID than for people with no disabilities and may be higher for people with ID than for people with certain other disabilities. Most of the available research is still based on convenience samples. More population-level data are needed to provide reliable estimates of the prevalence of this important health problem.

Adolescent↗