Intellectual Disabilities In Taiwan Research Articles

Unpacking the cultural paradox of attentive care for institutionalized people with intellectual disabilities.

This study contributes to the under-researched area of culture in institutional care for people with intellectual disabilities in an East Asian context. Drawing upon in-depth interviews with 20 women frontline care workers for institutionalized people with intellectual disabilities in Taiwan, we examined culture-specific caring relations such as the fictive kinships of Confucian care ethics (i.e., respect for elders and affection for the young), the charity paradigm, and religious compassion, which can induce attentive and respectful care in institutional spaces but also relegate residents to stigmatized subordination in a hierarchy of caring relations and legitimatize the voluntary exploitation of women workers. In situating the relational nature of care and the dis-enabling potentials of culture at the disability-care-place intersection, we promote an ethics of engagement that values and dignifies both recipients and providers of care.

A Pictorial Sexual Knowledge Scale for Male High School Students with Intellectual Disabilities in Taiwan

A Pictorial Sexual Knowledge Scale for Male High School Students with Intellectual Disabilities in Taiwan

Awareness of Sexual Rights and Empowerment: Quantitative and Qualitative Evaluation of a Sexual Health Intervention for Adults with Intellectual Disability

ABSTRACT Young people with intellectual disability (ID) rarely have opportunities to form intimate relationships or receive long-term interventions promoting their sexual health and awareness of sexual rights. To promote sexual health in adults with ID in Taiwan, we utilized intervention research and inclusive research to introduce three interventions that involved adults with ID, their parents, and service workers. This paper primarily evaluates the outcomes of a two-year intervention to promote sexual and reproductive health knowledge/positive attitudes and quality of life for adults with ID. A non-equivalent multiple-groups with replications design was used to gather data from 87 adults with ID. In-depth interviews and focus groups were used to collect the experiences and perspectives of adults with ID, service workers and parents. Although the experimental groups did not show a strong quantitative increase in sexual knowledge and sexual attitudes, the qualitative data indicated that the dialogues with and among the participants transformed their perceptions of sexual needs from being sexual problems to being sexual rights, which was empowering for adults with ID. Involving parents and service workers in the intervention and facilitating dialogue between these groups are essential to transform sexual problems of adults with ID into sexual rights.

Array-CGH increased the diagnostic rate of developmental delay or intellectual disability in Taiwan

Unexplained developmental delay or intellectual disability (DD/ID) has an estimated prevalence of about 3%-5% in the general population of Taiwan. Array comparative genomic hybridization (array-CGH) is a high-resolution tool that can detect about 50Kb chromosome aberrations. A previous study has reported a detection rate of 10%-20% for this array.1 This study aimed to investigate and compare the diagnosis rate for DD/ID using array-CGH and conventional chromosome study in DD/ID patients in Taiwan. We enrolled 177 patients with DD/ID who underwent array-CGH examination at the MacKay Memory Hospital between June 2010 and September 2017. The copy number variants (CNV) were classified into the following three groups: pathogenic (potential pathologic variant), benign (normal genomic variant), and uncertain clinical significance (variance of uncertain significance, VOUS), according to the ACMG guideline.2 RESULTS: Of the 177 enrolled patients, 100 (56.5%) were men and 77 (43.5%) were women. Ages ranged from 3 months to 50 years, with a median age of 5.2 years. Total 32.0% (32/100) male patients had pathogenic CNV, and 32.5% (25/77) female patients had pathogenic CNV. The ratio of pathogenic CNV in male and female patients was not significantly different (p=0.379). The proportions of pathogenic CNV at <3 years, 3-6 years, 6-12 years, 12-18 years, and >18 years of age were 32.3% (31/96), 19.4% (6/31), 34.8% (8/23), 16.7% (2/12), and 66.7% (10/15), respectively. The overall diagnosed rate of DD/ID with pathogenic CNV was 27.7% (49/177) using array-CGH in this study. There were 105 patients with conventional karyotyping and array-CGH data at the same time. Nineteen (18.1%) patients had visible chromosomal abnormality. Total 32/105 (30.5%) patients could find at least one pathogenic CNVs. The array-CGH had a higher diagnosed rate than the conventional karyotyping in clinical application. Although array-CGH could not detect point mutation, balanced translocations, inversions, or low-level mosaicism, the diagnosis rate in clinical application was up to 46.3% and 2.5 times that of conventional karyotyping analysis (18.1%). This study demonstrated that array-CGH is a powerful diagnostic tool and should be the first genetic test instead of conventional karyotyping analysis for patients with unexplained DD/ID.

Prevalence of overweight and obesity among students with intellectual disabilities in Taiwan: A secondary analysis

PurposeThe study aims to investigate the prevalence and likelihood of overweight and obesity in a large sample of students with intellectual disabilities (ID) from Taiwan. MethodA secondary analysis of a cross sectional study was employed to examine the body weight status among 7 to 18 year-old students with ID enrolled in public special education schools in 2013. The students were divided into three age groups (7–12yrs, 13–15yrs, and 16–18yrs), four ID levels (mild, moderate, severe, and profound) and six comorbidities of ID (ID only, ID caused by genetic disorders, ID with physical disability, ID with multiple disabilities without physical disabilities, ID with autism spectrum disorders, and others with rare diseases). ResultsThe sample represented 34.8% of students with ID attending public special education schools in Taiwan. Within this sample, 35.2% were identified as being overweight or obese. The 16 to 18 year-old age group were approximately two times (AOR=2.02, more likely to be obese than the 7–12 year-old group. Students with ID caused by genetic disorders such as Down syndrome (AOR=2.00) appeared to be more overweight or obese in comparison to those with ID only. Students with moderate (AOR=1.64) and severe ID (AOR=1.49) were more overweight/obese compared to those with profound ID. ConclusionThe findings not only highlight the high prevalence of overweight/obesity but also stress the need for health promotion initiatives to address issues of overweight/obesity within this population.

Attitudes Toward Male and Female Sexuality Among Men and Women With Intellectual Disabilities

Studies comparing the sexual attitudes of men and women with intellectual disabilities (ID) have been limited. A mixed-methods approach was employed to explore attitudes toward sexuality among men and women with ID in Taiwan and to ascertain the disparities between attitudes among men and women with ID. First, fifty-six men and forty-four women with mild and moderate ID completed a face-to-face interview survey. After this, focus groups were conducted for men and women with ID. Results indicated that women with ID were more likely to have negative attitudes toward parenting and non-reproductive sexual behavior than their male counterparts. Qualitative data indicated that men and women with ID had different sexual attitudes and experiences and were subject to different expectations from people around them. Both men and women with ID had very limited opportunities to develop romantic relationships and a healthy sexual identity. Sexual rights awareness and practice should be matters of concern for this group of adults and women with ID in particular.

Related factors and use of free preventive health services among adults with intellectual disabilities in Taiwan.

BackgroundThis study aimed to investigate the utilization of preventive health services in the adults with intellectual disabilities from the nationwide database.MethodsThe research method of this study is secondary data analysis. The data was obtained from three nationwide databases from 2006 to 2008. This study employed descriptive statistics to analyze the use and rate of preventive health services by intellectual disabled adults. Chi-square test was used to determine the relationship between the utilization of preventive health services and these variables. Multivariate logistic regression analysis was used to explore the factors that affect intellectual disabled adults’ use of preventive health services.ResultsOur findings indicated 16.65% of people with intellectual disabilities aged over 40 years used the preventive health services. Females were more frequent users than males (18.27% vs. 15.21%, p <0.001). The utilization rate decreased with increasing severity of intellectual disabilities. The utilization was lowest (13.83%) for those with very severe disability, whereas that was the highest (19.38%) for those with mild severity. The factors significantly influencing utilization of the services included gender, age, and marital status, urbanization of resident areas, monthly payroll, low-income household status, catastrophic illnesses status and relevant chronic diseases and severity of disability.ConclusionsAlthough Taiwan’s Health Promotion Administration (HPA) has provided free preventive health services for more than 15 years, people with intellectual disabilities using preventive health care tend to be low. Demographics, economic conditions, health status, relevant chronic diseases, environmental factor, and severity of disability are the main factors influencing the use of preventive healthcare. According to the present findings, it is recommended that the government should increase the reimbursement of the medical staff performing health examinations for the persons with intellectual disabilities. It is also suggested to conduct media publicity and education to the public and the nursing facilities for the utilization of adult preventive health services.

The characteristics and relevant factors of Pap smear test use for women with intellectual disabilities in Taiwan.

BackgroundThis study examines the Pap smear usage conditions and relevant influential factors for 18,204 women aged 30 years and above with intellectual disabilities, using nationwide data from 2008.MethodsThe research method of this study is secondary data analysis. The data was obtained from three nationwide databases from 2006 to 2008. This study employed descriptive statistics to analyze the use and rate of Pap smear testing by women with intellectual disabilities. Chi-square test was used to assess the correlation between Pap smear test usage and several variables. Logistic regression analysis was employed to explore the factors that influence Pap smear test usage.ResultsThe results show that 4.83% (n =880) of women with intellectual disabilities underwent Pap smear tests. Pap smear test usage rates exhibit a declining trend with increases in age. Factors that significantly influence Pap smear test use include age, urbanization level of resident area, monthly salary, aboriginal status, marital status, existence of DM, severity of disability.ConclusionsThe women with intellectual disabilities had a low use rate of Pap smear test, which is significantly less than the 28.8% usage rate for the general population of women aged 30 years and above.

Association of early-onset dementia with activities of daily living (ADL) in middle-aged adults with intellectual disabilities: The caregiver's perspective

Few studies have investigated in detail which factors influence activities of daily living (ADL) in adults with intellectual disabilities (ID) comorbid with/without dementia conditions. The objective of the present study was to describe the relation between early onset dementia conditions and progressive loss of ADL capabilities and to examine the influence of dementia conditions and other possible factors toward ADL scores in adults with ID. This study was part of the "Healthy Aging Initiatives for Persons with an Intellectual Disability in Taiwan: A Social Ecological Approach" project. We analyzed data from 459 adults aged 45 years or older with an ID regarding their early onset symptoms of dementia and their ADL profile based on the perspective of the primary caregivers. Results show that a significant negative correlation was found between dementia score and ADL score in a Pearson's correlation test (r=-0.28, p<0.001). The multiple linear regression model reported that factors of male gender (β=4.187, p<0.05), marital status (β=4.79, p<0.05), education level (primary: β=5.544, p<0.05; junior high or more: β=8.147, p<0.01), Down's syndrome (β=-9.290, p<0.05), severe or profound disability level (β=-6.725, p<0.05; β=-15.773, p<0.001), comorbid condition (β=-4.853, p<0.05) and dementia conditions (β=-9.245, p<0.001) were variables that were able to significantly predict the ADL score (R(2)=0.241) after controlling for age. Disability level and comorbidity can explain 10% of the ADL score variation, whereas dementia conditions can only explain 3% of the ADL score variation in the study. The present study highlights that future studies should scrutinize in detail the reasons for the low explanatory power of dementia for ADL, particularly in examining the appropriateness of the measurement scales for dementia and ADL in aging adults with ID.

A national survey of caregivers’ perspective of early symptoms of dementia among adults with an intellectual disability based on the DSQIID scale

As life expectancy increases for persons with an intellectual disability, concerns have been raised that there will be an increased demand for health or social services, particularly to address the challenges posed by the problems of dementia. To plan services for people with an intellectual disability who might experience the consequences of aging, an important first step is to obtain epidemiological data on the prevalence of dementia in this vulnerable population. This study aimed to investigate the dementia prevalence rate and its associated demographical factors in adults with an intellectual disability in Taiwan. A national survey was conducted to recruit 460 community residents of at least 45 years of age with an intellectual disability. The Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) was administered to caregivers to determine the symptoms of dementia in adults with an intellectual disability. The results indicated that 16.5% of the adults with an intellectual disability might have dementia conditions (DSQIID score≧20). After controlling for other factors in a multiple logistic regression analysis, the older adults with intellectual disability (≧55 vs. 45–54, OR=2.594, 95% CI=1.438–4.679) and those individuals with a comorbid diagnosis of mental illness or neurological disease (with vs. without, OR=2.826, 95% CI=1.593–5.012) had a higher risk of dementia than their counterparts. This study suggests that further longitudinal studies are needed to examine the specific aspects of the functions of living and morbidity that might be affected by aging and concomitant conditions in adults with an intellectual disability.

Outpatient physical therapy utilization for children and adolescents with intellectual disabilities in Taiwan: A population-based nationwide study

This study analyzed the utilization and utilization determinants of outpatient physical therapy (PT) among children and adolescents with intellectual disabilities (ID) in Taiwan. A cross-sectional study was conducted to analyze 2007 national health insurance (NHI) claim data from 35,802 eighteen-year-old and younger persons with intellectual disabilities. A total of 3944 (11.02%) claimants received outpatient physical therapy. Variables that affected PT utilization included age, residence urbanization level, ID level, copayment status and major co-morbidity. The average annual PT visit frequency was 25.4 ± 33.0; pre-school children, claimants suffering from catastrophic disease and ID co-occurring with cerebral palsy had a higher mean cost per visit. Age, ID level, copayment status and co-morbidity were factors that influenced expenditure. Pre-school children, males, individuals who resided in the lowest urbanization areas and individuals with a catastrophic disease tended to use hospital services. The point prevalence of epilepsy and cerebral palsy were 12.10% and 19.80%, respectively. Despite the NHI program and government regulations to provide special services, the use of physical therapy for children and adolescents with intellectual disabilities was low, and the utilization decreased as the subjects aged.

Trends in the use of psychotropic drugs in people with intellectual disability in Taiwan: A nationwide outpatient service study, 1997–2007

This study aims to examine trends in outpatient psychotropic drug use among people with intellectual disabilities in Taiwan. The NHI outpatient medication records between January 1, 1997 and December 31, 2007 for people with intellectual disabilities were analyzed to observe the percent change, prevalence and prescription trends in psychotropic drugs. The overall prevalence of psychotropic medication increased from 17.82% to 23.22% during the study period. Results from stepwise logistic analysis demonstrated that females, the elderly, and individuals suffering from catastrophic disease were more prone to receive psychotropic drugs and that those with mild intellectual disability were less likely to receive psychotropic drugs. The percentage change in prescription rates of antipsychotics, hypnotics/sedatives, and antidepressants were 85.30%, 127.25%, and 167.50%, respectively, and the trends were statistically significant (p<0.05). Taiwan's NHI program and off-label use of psychotropic drugs might have attributed to this trend.

An Illustrated Scale Measuring the Sexual‐Abuse Prevention Knowledge of Female High School Students with Intellectual Disabilities in Taiwan

The aim of this study was to develop an illustrated sexual-abuse prevention knowledge scale and to examine the knowledge of female high school students (tenth- to twelfth-graders) with intellectual disabilities studying at special education schools in Taiwan. An illustrated scale with 20 true/false items and 10 multiple-choice items was developed to assess the participants’ relevant knowledge. Each item consisted of a written question and corresponding illustration(s). A total of 196 female high school students in Taiwan participated in the study. Factor analysis generated five factors: puberty physiology, body boundaries, identification of improper sexual relationships, identification of abusive situations, and coping methods when facing abusive situations. These five factors explained 61.71 and 70.70 % of the variance for the true/false and multiple-choice items, respectively. The reliability analysis of the scale showed a value of .81 for true/false items, .74 for multiple-choice items, and .84 for the whole scale. The participants demonstrated a relatively better level of knowledge of puberty physiology, body boundaries, and identification of improper sexual relationships compared to knowledge of coping methods when facing abusive situations and identification of abusive situations.

Are adults with intellectual disabilities socially excluded? An exploratory study in Taiwan

The aim of this exploratory study is to examine to what extent adults with intellectual disabilities (ID) in Taiwan are socially excluded and to identify the factors that are potentially associated with such social exclusion. The research method of this study is secondary data analysis, using descriptive and χ2 statistical analysis. Two data sets, from the 2003 and 2006 surveys entitled 'Survey of Living Situation for People with Disabilities in Taiwan', were used (n = 572; n = 618). In addition, 'independent living/living within the community' (as opposed to residing in an institution), 'employment' and 'household economic situation/residing in a low-income household' were social exclusion indicators in this study. The results revealed that in the 2003 (2006) survey, 81.9% (79.6%) of the subjects fell into at least one category of social exclusion, 11.3% (12.3%) fell into two or more categories and 0.2% (1.1%) fell into all three categories. Moreover, older women with ID, with no spouse or partner, lower educational levels and greater severity of the disability had a significantly greater likelihood of being subjected to more categories of social exclusion. The finding that the proportion of adults with ID and no social exclusion has risen from 18.1% in 2003 to 20.4% in 2006 represents an encouraging trend. However, there has been a marked increase in the proportion of the subjects with more categories of social exclusion, particularly with regard to those who have to endure all three categories, from 0.2% in 2003, to 1.1% in 2006. This implies that, at the time of the last survey, there was still considerable room for improvement in the social inclusion of adults with ID in Taiwan.

Comparison of outpatient services between elderly people with intellectual disabilities and the general elderly population in Taiwan

This study aims to analyze the ambulatory visit frequency and medical expenditures of the general elderly population versus the elderly with intellectual disabilities in Taiwan, while examining the effects of age, gender, urbanization and copayment status on ambulatory utilization. A cross-sectional study was conducted to analyze data from 103,183 national health insurance claimants aged 65 or older. A total of 1469 had a principal diagnosis of mental retardation (intellectual disability) and claimed medical outpatient services in 2007. The average number of ambulatory visits was 30.1 ± 23.1, which is much higher than in the United States and other developed countries, and the mean annual visits of the elderly with intellectual disabilities was significantly higher than the general population in Taiwan (35.2 ± 28.7 vs. 30.0 ± 23.1). Age and copayment status affected outpatient visit frequency. The mean medical expenditure per visit and the mean annual outpatient cost were 1146.5 ± 4497.7 NT$ and 34,533.7 ± 115,891.7 NT$, respectively. Male beneficiaries tended to have higher average annual medical expenses and mean medical expenses per visit than female beneficiaries. The three most frequent principal diagnoses at ambulatory visits were circulatory system diseases, musculoskeletal system and connective tissue diseases and digestive system diseases. We conclude that the elderly with intellectual disabilities had higher demand than the general population for healthcare services, and the NHI program lowers the barrier to care for populations with special needs.

Quantifying morbidity burdens and medical utilization of children with intellectual disabilities in Taiwan: A nationwide study using the ACG case-mix adjustment system

The purpose of this study was to quantify morbidity burdens of children with intellectual disability (ID) and to examine its association with total medical utilization and expenditure on a national basis in Taiwan. People under 18 years of age that had been continuously enrolled in the National Health Insurance (NHI) between year 2008 and 2010 were selected from one million randomly-sampled NHI beneficiaries. The Johns Hopkins Adjusted Clinical Group (ACG) System was applied to evaluate an individual's morbidity burden using 2008-2010 claims data, including age, sex, diagnosis, pharmacy, ambulatory, and inpatient utilization and expenditure (in New Taiwan Dollars, NTDs). The ID prevalence rate was 0.69% for people aged under 18. People with ID could be assigned to 20 mutually exclusive ACGs and to five simplified morbidity categories: healthy (0.1%), low (1.5%), moderate (31.9%), high (44.0%), and very high (22.4%). People with ID had more per capita visits (108.4 vs. 51.5, p<0.001), hospital admission (27.7% vs. 13.1%, p<0.001), pharmacy (NTD 21,069 vs. 4983, p<0.001) and total expenditure (NTD 144,962 vs. 29,764, p<0.001) than those without ID over 3 years. Those who assigned to the high-morbid categories cost more in ambulatory and inpatient services than those with low to moderate morbidities. In conclusion, the morbidity burdens of people with ID can be quantified by the ACG System based on readily available data. Regularly evaluating morbidity burdens and medical utilization has particular relevance for planning high-quality and efficient care. People's disabilities and comorbid illnesses shall be treated by integrated multidisciplinary teams.

The Process of Perceiving Stigmatization: Perspectives from Taiwanese Young People with Intellectual Disability

There is a dearth of studies about the causes of stigmatization in people with intellectual disability. This study is aimed at gaining an understanding of how feelings of stigmatization are formed and perceived among young people with intellectual disability in Taiwanese cultural and social contexts. Fourteen young people with intellectual disability, ranging in age from 17 to 22 years, participated in this study. Data were collected and analysed using grounded theory. Three persistent themes were noted in regard to the formation of feelings of stigmatization among these young people with intellectual disability. (i) Being labelled: the sources of their stigma often resulted from the educational and social welfare systems. (ii) Perceiving oneself: they viewed themselves as 'not good' students, as troublemakers, as sick people and as odd people. (iii) Living with the labelling: they attempted to manage the impression that their intellectual disability had on others by using avoidance, isolation and self-promotion. Stigmatization among this intellectual disability group is invisibly formed while attending school and receiving social services. The value of the intellectual performance is not yet waived for young people with intellectual disability in Taiwan. Changing the social opinions of intellectual disability can help to avoid stigmatizing these people with intellectual disability.

Perspectives on intellectual disability in Taiwan

The present review examines the most recent published references to epidemiology, healthcare needs and utilization and social and health policy relating to people with intellectual disability in Taiwan. Electronic searches of Medline, PubMed and PsychInfo literature using the key terms of epidemiology, etiology, welfare policy, health policy, health services, intellectual disability, learning disability and mental retardation as well as a thorough manual search for relevant literature. The administrative prevalence of intellectual disability was 0.318-0.396%, and men accounted for a higher percentage of cases than women in Taiwan. Institutionalized care still dominates disability services provided in this society, and the number of institutions and staff working therein has increased steadily in recent years. Many studies also identify the high risk for ill health accompanied by physical/mental diseases in people with intellectual disability, with this group also requiring more healthcare services than the general population in Taiwan. There are still many barriers to accessibility and availability of health and social services confronting people with intellectual disability and their caregivers under the National Health Insurance scheme in Taiwan. As a result of this review process, this paper suggests that future study should focus on an evaluation of the efficacy of current health and social policies related to people with intellectual disability, and that supportive health environments be initiated for this group of people living in institutions or in the community.

Factors influencing administration of hepatitis B vaccine to community-dwelling teenagers aged 12–18 with an intellectual disability

The study aims to determine hepatitis B vaccination coverage rates among community-dwelling teenagers with an intellectual disability in Taiwan and to identify the possible influencing factors of their vaccination. The present paper was part of the results of the "2007 National Survey on Healthy Behaviors and Preventive Health Utilizations of People with Intellectual Disabilities in Taiwan," which was a cross-sectional survey of 1111 intellectually disabled (ID) teenagers ranging from 12 to 18 years of age. The results showed that the completed hepatitis B vaccination rate was 72.9%, a rate lower than that in the general population of Taiwan considering the same age group. There was no gender difference between each age group in the vaccination rate in this population. Multilevel logistic regression analyses revealed that those ID individuals whose primary caregivers were parents or siblings (OR = 2.45, 95% CI = 1.29-4.64), whose household monthly income was 20,000-59,999 NTD vs. less than 20,000 NTD (OR = 2.47, 95% CI = 1.00-6.12), and who had ever undergone an oral health exam (OR = 2.29, 95% CI = 1.24-4.01) were more likely to receive a complete hepatitis B vaccination than their counterparts. The study highlighted that most teenagers had received complete hepatitis B vaccination. Nonetheless, better public health strategies may be needed to deliver the hepatitis B vaccine to those who do not comply with the vaccination schedule in the community.

Outcomes of a new residential scheme for adults with intellectual disabilities in Taiwan: a 2‐year follow‐up

The Taiwanese government launched a new programme in November 2004 to support adults with intellectual disabilities living in smaller facilities. This paper aims to evaluate the service outcomes of this new residential scheme over 2 years including those residents who moved from an institution and those who moved from their family. A one-group repeated-measures analysis was conducted for five interviews after the adults with intellectual disabilities entered the new environment. Forty-nine adults were initially studied (T1) and 29 adults remained in the homes until the end of the study (T5). This study found significant improvements over the 2 years in the residents' quality of life and family contact. The results also highlight a decrease in maladaptive behaviour among the residents moving from institution and an increase in choice making and family contact among the residents moving from family. No significant changes in adaptive behaviour and community inclusion were found. Results revealed that further policy changes and financial support including service quality assurance are required in order to improve service outcomes for adults living in the new residential scheme.