Quality of life in caregivers of children and adolescents with intellectual disabilities: Use of WHOQOL-BREF survey

The present study based on World Health Organization quality of life (WHOQOL-BREF) scale to examine quality of life of the caregivers caring for their children/adolescents with intellectual disabilities in Taiwan, and the factors contributing to their quality of life. Structured interviews were conducted with 597 caregivers of children/adolescents with intellectual disabilities. The results found that the mean scores in each domain of WHOQOL-BREF of the caregivers as the followings: physical capacity (PC) was 13.71 ± 2.35, psychological well-being (PW) was 12.21 ± 2.55, social relationship (SR) was 12.99 ± 2.43 and environment (EN) was 12.32 ± 2.38. These mean scores were lower than the general population and slight higher than the caregivers of adults with intellectual disabilities in Taiwan. Finally, multiple stepwise regressions were conducted to examine the characteristics of caregiver and children/adolescents with intellectual disabilities will more likely explained the WHOQOL-BREF mean scores. The study found the following three factors: self-perceived health status, household income and stress from insufficient family support were significantly correlated to all four domains in multiple stepwise regression analyses. The results highlights that caregivers of children and adolescents with intellectual disabilities seem to display a lower WHOQOL-BREF mean score than the general population, probably for a combination of stress, health and household income factors. These finding must be taken into account in policy making to provide better and more specific supports and interventions for the caregivers of people with intellectual disabilities.     

The assessment of the quality of life of adults with intellectual disability: The use of self-report and report of others assessment strategies

Assessment strategies that reliably and validly assess the indicators of quality of life (QOL) of individuals with intellectual disability (ID) are necessary for planning interventions and evaluating outcomes. In the present study, inter-rater reliability and concordance of the two assessment strategies report of others and self-report were evaluated in a group of 176 Italian adults with ID using the Personal Outcomes Scale, which employs the same QOL indicators in the self-report and report of others versions. Report of others resulted a reliable assessment strategy. Clients’ point of view was compared with both the estimation of their point of view and third-party-point-of-view obtained by two independent caregivers for each client. Results indicated that both self-report and report of others assessment strategies are necessary and that estimation of the client's point of view may be a valid and reliable substitute of self-report when clients are not able to answer.     

Quality of life of persons with profound intellectual and multiple disabilities: A narrative literature review of concepts,assessment methods and assessors

Background: The objective of this study was to provide an overview of concepts, methods of assessment and assessors in empirical studies on quality of life (QoL) of persons with Profound Intellectual and Multiple Disabilities (PIMD).

Method: A narrative literature review was conducted by searching electronic databases until December 2016, and the included studies were then analysed thematically.

Results: Twenty-one articles were included in the analysis. Multidimensional concepts of QoL consisting of both subjective and objective components were found, although the articles used different distinctions for each. QoL was assessed by behavioural observations or interviews/questionnaires. Family members, primary caregivers and more distant observers (or a combination of these three) determined QoL. Triangulation of assessors and methodological pluralism were used.

Conclusions: This review highlighted several components of QoL in persons with PIMD, as well as challenges in researching the QoL of persons who are not able to express themselves verbally. The distinction between objective and subjective QoL was difficult to clarify, with interpretation being both inevitable and necessary. Although triangulation is seen to be good practice in QoL assessment, the role of proxies in assessing the QoL of persons with PIMD needs further investigation.     

Quality of life for people with intellectual disabilities in China: a cross-culture perspectives study

Background The concept of quality of life (QOL) is explained on the basis of traditional Chinese culture and contemporary social and cultural trends. Method The importance of internationally recognized QOL domains and indicators was determined for three respondent groups: consumers, parents of the consumers, and teachers and rehabilitation professionals working with the clients. Results Principal component analysis confirmed seven factors influencing QOL for people with intellectual disabilities (ID) in China. These seven components are conceptually equivalent to the eight domains found in the international QOL literature. Conclusion The concept of QOL has become one of the most sensitive issues in present Chinese society and peoples’ lives, and an important theoretical framework for the education and rehabilitation for people with ID in several ways: curriculum development, service delivery models, education and rehabilitation practices, and employment models.     

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.     

The siblings relationship of adolescents with and without intellectual disabilities

The sibling relationship of adolescents with and without intellectual disabilities was examined. Participants were 70 sibling dyads - each dyad was comprised of one 12-year old adolescent with (N = 23) or without intellectual disabilities (N = 47). Sibling relationships, behavior problems, and social skills were assessed using mother reports. Results revealed three findings. First, for typically developing adolescents, mothers reported more warmth in the sibling relationship for opposite sex dyads. For adolescents with intellectual disabilities, mothers reported more warmth in the sibling relationship for same-sex dyads. Second, for typically developing adolescents, mothers reported more status/power differences when the sibling was younger than when the sibling was older. For adolescents with intellectual disabilities, birth order did not affect status/power in the sibling relationship. Third, for typically developing adolescents, conflict was related to internalizing behavior problems. For adolescents with intellectual disabilities, conflict was related to externalizing behavior problems. Implications, limitations, and future directions are discussed.     

The impact of health checks for people with intellectual disabilities: An updated systematic review of evidence

Health checks for people with intellectual disabilities have been recommended as one component of international health policy responses to the poorer health of people with intellectual disabilities. This review updates a previously published review summarising evidence on the impact of health checks on the health and well-being of people with intellectual disabilities. Electronic literature searches and email contacts were used to identify literature relevant to the impact of health checks for people with intellectual disabilities published from 1989 to 2013. Forty-eight publications were identified, of which eight articles and two reports were newly identified and not included in the previous review. These involved checking the health of people with intellectual disabilities from a range of countries including a full range of people with intellectual disabilities. Health checks consistently led to detection of unmet health needs and targeted actions to address health needs. Health checks also had the potential to increase knowledge of the health needs of people with intellectual disabilities amongst health professionals and support staff, and to identify gaps in health services. Health checks are effective in identifying previously unrecognised health needs, including life threatening conditions. Future research should consider strategies for optimising the cost effectiveness or efficiency of health checks.     

Gait characteristics in individuals with intellectual disabilities: A literature review

Gait is a functionally highly relevant aspect of motor performance. In the general population poorer gait increases the risk of falls and is a predictor for future disability, cognitive impairment, institutionalization and/or mortality. People with intellectual disabilities (ID) show a delayed motor development, which brings to attention the abnormalities that might accompany gait in this population throughout childhood and adulthood. Therefore, this paper aims (a) to provide a focused review of the available literature on gait characteristics in individuals with ID and (b) to gain insight into available instrumentations measuring gait in this population. We searched the database of PubMed for relevant articles and the reference lists of included articles, resulting in 44 included articles. Forty one studies reported gait characteristics during over-ground walking and six studies during perturbed walking conditions. Most studies investigated syndrome-specific ID populations, only five studies investigated the general ID population. The studies show that gait abnormalities are evident during over-ground walking in the ID population, both in people with genetic syndromes and with ID without genetic syndromes. During perturbed conditions people with ID altered their gait with stability-enhancing adaptations. Abnormalities in gait may be partly explained by physical features, but the interrelatedness between gait and cognition may also be an explanation for the gait abnormalities seen in the ID population. Further research regarding gait characteristics of the ID population, and its relation to cognitive functioning, and adverse health outcomes is needed.     

Measuring the quality of life of people with profound multiple disabilities using the QOL-PMD: First results

The present study focused on the objective components of quality of life (QOL) of people with profound multiple disabilities (PMD). More specific, we aimed at evaluating different dimensions of QOL of people with PMD and investigating the association between their QOL and several personal (age, gender, intellectual capabilities, motor limitations, sensory limitations, physical and mental health status) as well as setting characteristics (location of the setting, type of setting, size of the setting, group size, group composition, staffing level and staff turnover). As a measure of the QOL of people with PMD we used the QOL-PMD, a questionnaire that we specifically developed for this purpose. To measure the personal and setting characteristics we also used a self-developed questionnaire. Forty-nine people with PMD were selected. For each of these people three informants were chosen who each filled out the QOL-PMD. To account for the clustered nature of the data, data were analysed by means of mixed models. Characteristics regarding the medical condition of the person with PMD turned out to be most strongly associated with the QOL-PMD scores. Other personal characteristics such as age, gender, motor limitations and sensory limitations did not have a significant effect on the QOL-PMD scores. With regard to the setting characteristics, location of the setting and staffing level turned out to have a significant effect on the QOL-PMD scores.     

The making of a field: The development of comorbid psychopathology research for persons with intellectual disabilities and autism

Knowledge in the area of developmental disabilities has been expanding rapidly. One area that has received particular attention is the topic of related comorbid conditions. This phenomenon is not exclusive to the field of developmental disabilities. However, research with this population is of recent origin. The purpose of this paper is to review the origins of this field including some of the notable developments and potential future trends.     

Rasch analysis of the Developmental Test of Visual-Motor Integration in children with intellectual disabilities

The purpose of this study was to examine the measurement properties of the Developmental Test of Visual-Motor Integration (VMI) in children with intellectual disabilities (ID) ages 4–12 years using the dichotomous Rasch model. The VMI was administered individually to 454 children with ID. Rasch analysis was applied to investigate unidimensionality, item fit to the model, differential item functioning (DIF), and item targeting. Discriminative validity was obtained by receiver operating characteristic (ROC) curve analysis. Items were eliminated if the task was too easy or too difficult, or showed misfit to the Rasch model. The remaining items fitted the unidimensional construct the test was intended to measure and were free of DIF. The Rasch reduced version of the VMI with 9 items appeared to be suited to measure mild degrees of perceptual-motor impairment and demonstrated excellent reliability (0.91). VMI-9 had a larger area under the ROC curve in its ability to differentiate mild versus moderate to severe ID compared with the original version. Taken together, the VMI-9 provides a quick, reliable and valid measure for screening and identifying perceptual-motor deficits in children with ID.     

The relationship between Axis I psychopathology and quality of life in adults with mild to moderate intellectual disability

Individuals with intellectual disability are at risk for impaired quality of life (QOL) compared to the general population. Little is known, however, about factors that may affect QOL in those with intellectual disability. The current study examined the role that Axis I psychopathology plays in the QOL of 138 adults with moderate to borderline intellectual disability. Scores on the Quality of Life Questionnaire (QOL-Q) were compared between those with a Psychotic Disorder, those with a Mood/Anxiety Disorder, and those with no Axis I diagnosis. Additionally, the effects of number of Axis I diagnoses was explored. Those with no Axis I diagnosis were found to have significantly higher QOL-Q scores than those in either diagnostic group. No significant differences were found between the two diagnostic groups. Additionally, those with no Axis I diagnosis were found to have significantly higher QOL-Q scores than those presenting with two or more Axis I diagnoses. The results and their implications are discussed.     

Effectiveness of cognitive-behaviour therapy for hoarding disorder in people with mild intellectual disabilities

Evaluations of cognitive behavioural interventions for hoarding for those with intellectual disabilities (ID) have not been previously attempted. This investigation therefore examined the acceptability and effectiveness of cognitive-behavioural therapy (CBT) in a sample of N = 14 adults with mild ID. All participants had hoarding as their primary problem and received twelve individual CBT sessions, all conducted via domiciliary visits. The primary outcome measure was an environmental measure (Clutter Image Rating Scale), which was scored at baseline, end of treatment and at six-month follow-up. Acceptability of CBT was measured via the treatment refusal and dropout rate. Secondary self-report outcomes included measures of hoarding, depression and anxiety. Results demonstrate that hoarding significantly reduced following treatment on both self-report and environmental assessment. No participants refused or dropped out of treatment and that there was no evidence of relapse over the follow-up period. No adverse treatment incidences were reported. This open trial suggests that CBT may be a safe and effective intervention for hoarding difficulties in people with ID, but that the evidence base in this population needs urgent and detailed attention.     

Diabetes in people with intellectual disabilities: A systematic review of the literature

ObjectiveTo present an analysis of the evidence related to the prevalence of diabetes in people with intellectual disabilities (ID), their experiences of their condition and treatment and those of their carers.Materials and methodsA systematic literature review was conducted. A total of 22 studies exploring diabetes prevalence and 5 exploring views and experiences of diabetes in people with ID were identified and included. A narrative synthesis approach was utilised to amalgamate data extracted from the included studies regarding some 49,046 participants with ID and diabetes and 31 care professionals and family members across Europe, North America, New Zealand, Australia, China and Hong Kong.ResultsPrevalence rates of diabetes in people with ID were highly varied, ranging from 0.4% to 25%. 7 studies reported significantly higher rates of diabetes in people with ID than the general population. People with ID reported a basic understanding of diabetes and wanted to know more. Carers reported that they lack diabetes knowledge and do not routinely encourage diabetes self-management skills. Several studies neglected to report vital demographic information such as participants’ level of ID (13 studies) and diabetes type (16 studies) and the quality of included prevalence studies was variable.ConclusionsFurther research in this field is required, notably prevalence studies which control for participant demographics and personal situations to obtain more accurate diabetes prevalence rates in this population group. People with ID and diabetes should be encouraged to participate in future research and we recommend exploring the feasibility of adapting current mainstream diabetes management programmes for these individuals.     

The risk of metabolic syndrome among institutionalized adults with intellectual disabilities

People with metabolic syndrome (MS) are at increased risk of coronary heart disease and other health problems, such as diabetes and stroke. However, there is little previous information on the prevalence and determinants of MS among people with intellectual disabilities (IDs). The present study aimed to examine the prevalence of MS risk factors among institutionalized adults with IDs. We analyzed the annual health check data of 164 institutionalized adults with IDs whose age was ≧20 years in 2009. The measure of MS in the study was the presence of three or more of the following five components: central obesity, elevated blood pressure (BP), elevated fasting glucose (FG), elevated triglycerides (TG), and reduced high-density lipoprotein (HDL-C). The prevalence of MS was 11.6% in the study participants (8% in males and 17.2% in females), which is lower than that in the general population of Taiwan. In the logistic regression analysis of the occurrence of MS, we found that gender, TG and HDL-C were variables that could significantly predict MS after controlling for other potential factors. Adults with IDs who were female (OR = 38.354, 95% CI = 1.985-741.029) and who had higher TG levels (OR = 1.043, 95% CI = 1.008-1.079) and reduced HDL-C levels (OR = 0.696, 95% CI = 0.549-0.883) had a statistically higher risk of MS. This study was one of the first to provide information on the prevalence of MS and its risk factors among institutionalized adults with IDs. We suggest that further study should focus on the specifics of MS, such as incidence, age-specific risk factors and further prevention or treatment in people with ID.     

Psychometric evaluation of a questionnaire to measure the quality of life of people with profound multiple disabilities (QOL-PMD)

Because of a shortage of valid instruments to measure the QOL of people with profound multiple disabilities (PMD), the QOL-PMD was developed. In the present study, possibilities for item reduction as well as the psychometric properties of the questionnaire were examined. One hundred and forty-seven informants of people with PMD participated in the study. Fifty items were removed from the questionnaire on the basis of preset criteria. Internal consistency was good for the total questionnaire as well as for the subscales. Evidence of the construct validity of the questionnaire was found. Correspondence between the groups of informants was moderate. The results of this preliminary analysis of the psychometric properties of the QOL-PMD are encouraging, but further validation of the measure is warranted.     

Characteristics of the least frail adults with intellectual disabilities: A positive biology perspective

The current study focuses on the characteristics of older people with intellectual disabilities with the lowest frailty levels. Frailty is an increased risk of adverse health outcomes and dependency. Older adults with intellectual disabilities (ID) show more signs of early frailty than the general population. Knowledge of the least frail group characteristics may provide insight into possibilities to prevent early frailty in older people with intellectual disabilities. This study was part of the Healthy Aging and Intellectual Disability study (HA-ID) which incorporated 1050 adults aged 50 years and over with all levels of ID. Frailty was measured with a frailty index. The least frail group was selected based on a frailty index score ≤0.10. Odds ratios were used to compare the occurrence of health deficits in the least frail group to the remaining group. The least frail group consisted of 65 participants, corresponding with 6.6% of the study population. The least frail group was significantly younger, had less severe levels of ID, and less often Down syndrome than the remaining group. The lack of mobility and physical fitness limitations, dependence, no signs of depression/dementia, and little medical problems characterized the least frail group. The percentage of 50+ adults with intellectual disabilities within the least frail group is very low compared to that in the general aging population (>43%). Interventions to prevent or delay frailty in this population are highly recommended and can focus on health characteristics of the least frail group.     

Impact of severe intellectual disability on proxy instrumental assessment of quality of life

Background: Proxy quality of life (QoL) evaluation has been reported to be influenced by many factors. The present study was designed to investigate the impact that the presence of severe intellectual disability (ID) may have on proxy attribution of QoL in the instrumental assessment.

Methods: The “other person” form (proxy questionnaire) of the Italian adaptation of the Quality of Life Instrument Package (QoL-IP), the BASIQ [BAtteria di Strumenti per l’Indagine della Qualità di Vita] was administered to 20 first-line operators to assess their perceptions of the QoL of 92 subjects with severe ID and 34 volunteers without ID. The 54-item BASIQ measures three psychological domains (Being; Belonging; Becoming) and nine sub-domains, with each item also assessed across four dimensions (Importance; Satisfaction; Decision-making; and Opportunities).

Results: Subjects with ID (as rated by proxies) had higher scores on BASIQ domains than those of non-ID subjects except for the sub-domain of Psychological Being. People with ID also received lower scores from proxies on the Decision-making dimension but higher scores on the Opportunities dimension. Differences between groups were statistically significant for most variables.

Conclusions: Findings suggest that prejudicial attitudes towards the QoL of people with severe ID may be either absent in proxies or contained within the scope of the excercise. Previous research indicating that non-integrated QoL assessment may give paradoxical results was also supported.