Psychosocial and cultural needs of children with intellectual disability and their families among the Syrian refugee population in Turkey.

BACKGROUND: Turkey is the country hosting the largest number of refugees from Syria, with currently 3 571 175 million persons. The general health needs of the refugees are being addressed; however, people with intellectual disabilities (IDs), particularly children, are relatively missed. The aim of this study was to identify medical, psychological and social needs of children with ID and their families, among the Syrian refugee population in Turkey, and to define psychosocial and cultural needs for planning of future services. METHODS: One hundred forty-two children (67.6% men; mean age 90.5 months) diagnosed with intellectual disorders were included in the study. Family Needs Survey, with additional open-ended and close-ended questions, was used to evaluate family needs. Items from Developmental Disabilities Profile-2 were used to evaluate and screen cognitive, motor and language development as well as medical concerns and behavioural problems. Data on sociodemographic characteristics were also collected. RESULTS: The highest needs were identified in information and financial needs domains. Other indicated needs were on child care and community services domains. The least indicated items were on family and social support and explaining to others domains. An average of 63.5% of the respondents definitely agreed with the Family Needs Survey items. The overall level of identification of need items was higher than that in some previous studies, indicating the level of unmet needs of the studied population. Family income, parents' employment and parents' education were not significantly associated with unmet family needs. Special education services were unreachable for most of the families in the study. CONCLUSIONS: Families reported the highest needs in information and financial needs domains. The overall level of identification of needs was higher than that in some previous studies, indicating the level of unmet needs of the studied population. The majority of the parents reported that they had sufficient family and social support, which might be a protective factor for parental mental health. Parents' Turkish fluency was very significantly associated with every domain of unmet needs. Language barriers and translation problems had significant negative effects on families, as confirmed by the answers to open-ended questions. Another important factor identified was access to service professionals. Special education services, sorely needed for most of the families, could not always be reached. Although the progress of children who had received special education was not very encouraging, it was better than those who did not receive it. The first implication of the study is that increasing Turkish proficiency or providing high-quality and consistent translation services is vital for this category of children with ID. The second implication is that information and financial needs must be met with priority. Information must be tailored for each child's needs and developmental level. Special education and physical therapy must be more accessible and at higher quality.

Factors Influencing Low Prevalence of Neurodevelopmental Disabilities Among US Hispanic/Latino Children.

OBJECTIVES: Hispanic/Latino (H/L) children have lower prevalence of neurodevelopmental disabilities (NDD) than other groups. The explanations for this are complex, but may be related to nativity, language barriers, and lack of access to and utilization of healthcare. Previous research focused on how these factors affect children with NDD, but little research has jointly examined whether these factors predict NDD. This study examines whether social and environmental factors explain low prevalence of NDD in this population. METHODS: This study uses nationally representative Integrated Public Use Microdata Series National Health Interview Survey data (N = 200,622) and multivariate logistic regression analysis to compare NDD prevalence in white and H/L children (average age of 10.2), and examines whether nativity, healthcare access, healthcare utilization, and language barriers explain this disability disparity. RESULTS: Findings reveal that the H/L NDD disparity is not explained by differences in access to or utilization of healthcare, or as a result of language differences that may create barriers to NDD diagnosis. While H/L children whose sampled adult was born in the USA have lower rates of NDD than whites, H/Ls whose sampled adult were not born in the USA have even lower probability of NDD than H/Ls who were born in the USA. CONCLUSIONS: These findings may be a result of cultural differences in knowledge or understanding of what constitutes a disability or the result of differential treatment within the healthcare system among H/Ls. The findings underscore the importance of accessible and culturally appropriate health and clinical care interventions among H/L communities.

Racial and ethnic disparities in birth outcomes and labour and delivery-related charges among women with intellectual and developmental disabilities.

BACKGROUND: Women with intellectual and developmental disabilities (IDD) in the USA are bearing children at increasing rates. However, very little is known whether racial and ethnic disparities in birth outcomes and labour and delivery-related charges exist in this population. This study investigated racial and ethnic disparities in birth outcomes and labour and delivery-related charges among women with IDD. METHODS: The study employed secondary analysis of the 2004-2011 Healthcare Cost and Utilization Project National Inpatient Sample, the largest all-payer, publicly available US inpatient healthcare database. Hierarchical mixed-effect logistic and linear regression models were used to compare the study outcomes. RESULTS: We identified 2110 delivery-associated hospitalisations among women with IDD including 1275 among non-Hispanic White women, 527 among non-Hispanic Black women and 308 among Hispanic women. We found significant disparities in stillbirth among non-Hispanic Black and Hispanic women with IDD compared with their non-Hispanic White peers [odds ratio = 2.50, 95% confidence interval (CI): 1.16-5.28, P < 0.01 and odds ratio = 2.53, 95% CI: 1.08-5.92, P < 0.01, respectively]. There were no racial and ethnic disparities in caesarean delivery, preterm birth and small-for-gestational-age neonates among women with IDD. The average labour and delivery-related charges for non-Hispanic Black and Hispanic Women with IDD ($18 889 and $22 481, respectively) exceeded those for non-Hispanic White women with IDD ($14 886) by $4003 and $7595 or by 27% and 51%, respectively. The significant racial and ethnic differences in charges persisted even after controlling for a range of individual-level and institutional-level characteristics and were 6% (ln(ß) = 0.06, 95% CI: 0.01-0.11, P < 0.05) and 9% (ln(ß) = 0.09, 95% CI: 0.03-0.14, P < 0.01) higher for non-Hispanic Black and Hispanic Women with IDD compared with non-Hispanic White women with IDD. CONCLUSIONS: Our findings highlight the need for an integrated approach to the delivery of comprehensive perinatal services for racial and ethnic minority women with IDD to reduce their risk of having a stillbirth. Additionally, further research is needed to examine the causes of racial and ethnic disparities in hospital charges for labour and delivery admission among women with IDD and ascertain whether price discrimination exists based on patients' racial or ethnic identities.

"We Had to Keep Pushing": Caregivers' Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care.

Black children with autism spectrum disorder (ASD) are diagnosed later than their White peers, are more likely to be misdiagnosed, and are less likely to receive early intervention services or a developmental evaluation by three years old. Using a grounded theory approach, we solicited the perspectives of parents and other primary caregivers of Black children with ASD on barriers and facilitators to ASD screening and referrals in primary care. A socioeconomically diverse sample of 22 female caregivers participated. Four themes emerged. First, while some caregivers noted their child's primary healthcare providers facilitated a timely ASD diagnosis, other participants reported these providers ignored early concerns about child developmental delays. Second, many participants felt racial bias negatively impacted caregiver-primary healthcare provider interactions. Third, legal/custodial issues slowed caregivers' abilities to follow up on referrals from their primary healthcare providers. Finally, caregivers described denial, shame, and stigma relating to ASD in the Black community as possible factors for delayed follow up to referrals. Differences based on socioeconomic status are discussed. Efforts to improve family-centered, culturally relevant care for all Black caregivers raising children with or at-risk for ASD are needed, particularly for those families experiencing the multiple effects of poverty.

Dietary patterns, cost and compliance with low-protein diet of phenylketonuria and other inherited metabolic diseases.

BACKGROUND/OBJECTIVES: Phenylketonuria (PKU) and several other inherited metabolic diseases (IMD) require a lifelong low-protein diet (LPD), otherwise they lead to many health complications. LPDs, however, carry a significant economic burden for patients and their families. The objective of this study was to explore the costs of low-protein foods (LPFs) necessary for LPD as well as dietary patterns and compliance towards an LPD. SUBJECTS/METHODS: A detailed questionnaire was created in cooperation with National Association of PKU and other IMD (NSPKU), and consequently sent to all NSPKU members treated with an LPD (n=303). A total of 184 respondents from the Czech Republic were included in the study (174 had PKU, 10 had other IMD). RESULTS: The average daily consumption of LPF was equal to 411.7 g (PKU) and 345.6 g (other IMD), which corresponds to energy value of 5558 kJ and 4438 kJ, respectively, per patient per day. Patients mostly consumed low-protein flour (≈30% of energy intake), pasta (≈18%), basic pastry (≈15%) and sweets (≈10%). The average monthly costs of LPDs were equal to [euro ]130 (PKU) and [euro ]129 (other IMD) per patient per month. The compliance with LPD was decreasing with increasing age (P<0.0001). CONCLUSIONS: This is the largest study examining costs and dietary patterns of LPDs in patients with PKU and the first study of this kind in other IMD patients requiring an LPD. The study clearly showed that an LPD carries a very high economic burden for families, which may lead to less LPD compliance and potential severe health consequences.

Racial and Ethnic Health Disparities Among People With Intellectual and Developmental Disabilities.

Racial and ethnic health disparities are a pervasive public health problem. Emerging research finds similar health disparities among people with intellectual and developmental disabilities (IDD) compared to nondisabled adults. However, few studies have examined racial and ethnic health disparities among adults with IDD. Using national data, we examined racial and ethnic disparities in health status among adults with IDD, and investigated differences in health status between adults with IDD and nondisabled adults within each racial and ethnic group. We found that Latino and Black adults with IDD had worse health outcomes compared to White adults with IDD, and Latino and Black adults with IDD had worse health outcomes than nondisabled adults from the same racial and ethnic group.

Marital satisfaction of Chinese mothers of children with autism and intellectual disabilities in Hong Kong.

BACKGROUND: Previous research showed an association among perceived stigma, perceived caregiving burden and marital satisfaction of mothers. However, little is known about their relationship among mothers of young children with disabilities in the Chinese context. The mediating role of perceived caregiving burden between perceived stigma and marital satisfaction was seldom explored. Hence, the present study aims to investigate the relationship between perceived stigma, perceived caregiving burden and marital satisfaction of Chinese mothers of children with intellectual disabilities or autism spectrum disorders in Hong Kong. METHODS: A cross-sectional survey using convenience sampling was conducted with mothers of pre-school children with disabilities aged from 2 to 6. A total of 160 completed questionnaires were collected from five special child care centres in Hong Kong. RESULTS: The findings in the hierarchical regression analyses showed that perceived stigma and perceived caregiving burden were significant predictors of mothers' marital satisfaction. Perceived burden, including perceived social burden, emotional burden and developmental burden but excluding time-dependence and physical burden, were found to be significant mediators between perceived stigma and marital satisfaction. CONCLUSION: To address the negative consequences brought on by stigma, measures can be taken to prevent stigmatisation and minimise the harmful effects. To alleviate mothers' perceived burden, Acceptance and Commitment Therapy, mutual support groups and psycho-educational and skills training programmes can be conducted for the mothers.

Was cultural deprivation in fact sensory deprivation? Deprivation, retardation and intervention in the USA.

In the 1950s, the term "deprivation" entered American psychiatric discourse. This article examines how the concept of deprivation permeated the field of mental retardation, and became an accepted theory of etiology. It focuses on sensory deprivation and cultural deprivation, and analyzes the interventions developed, based on these theories. It argues that the controversial theory of cultural deprivation derived its scientific legitimization from the theory of sensory deprivation, and was a highly politicized concept that took part in the nature-nurture debate.

Investigation of raising burden of children with autism, physical disability and mental disability in China.

The family economic burden of raising autistic children, physical disabled children and mental disabled children were evaluated in China. 227 parents of children with autism, children with physical disability, children with mental disability and normal children were interviewed for children's costs, family income and economic assistance, etc. The medical cost and caring cost of disabled children were significantly more than those of normal children, and the education cost, clothes cost and amusement cost of disabled children were significantly less than those of normal children. Family income was only predicted by parents' education level. Families of disabled children received more economic assistance than families of normal children except families of autistic children. More children the family had, less economic assistance the family acquired. Compared with normal children, the raising burden of children with disabilities were as follows: children with autism (19582.4 RMB per year), children with physical disability (16410.1 RMB per year), children with mental disability (6391.0 RMB per year). Families of autistic children, physical disabled children and mental disabled children have heavier raising burden than families of normal children, they need more help from many aspects.

The research on the status, rehabilitation, education, vocational development, social integration and support services related to intellectual disability in China.

Intellectual disability (ID) is a prevalent form of non-progressive cognitive impairment. The objectives of this articles are: to analyze the changes of ID in China, including its definition, prevalence, rehabilitation, education, vocational development, social life and support services; to review and to compare the issues of intellectual disability in China with the international literatures and research studies and to provide useful updated information and reference data for scholars and researchers who study intellectual disability. Analyzed the data obtained from two national sample surveys on disability with respect to intellectual disability in China. The estimated prevalence of individuals with intellectual disabilities in China was 7.5‰ in 2006 nationally which was lower than the previous results obtained in the 1987 national survey. The fourth level of ID showed a downward trend, while the proportion among the population aged 60 and over with ID tended to increase. The 2006 national survey indicated that the prevalence of ID in rural areas was higher than that in urban areas. This finding was consistent with the national survey conducted in 1987. As indicated by the 2006 national survey, 29.4% cases had no known causes for the ID, the proportion tended to decrease as compared with the first survey. However, when compared to the 1987 report, the proportion of senile dementia among older people as indicated by the 2006 report was higher than before. During the past years, the prevention of ID and the quality of life of individuals with ID have improved due to the enactment and implementation of a series of national laws and regulations, however, there is more that needs to be done in the areas of education, vocational development, social integration and support services for individuals with ID in order to improve the quality of life of individuals with ID in China. The findings of this study are consistent with the research findings presented in the international literatures. ID is the conditions that deserve further study and deserve the attention of policy makers and rehabilitation professionals in China. Furthermore, with the ageing of population in China and its impact to the social security system, the in-depth study of ID and its implications has become more pertinent in China in the future.

Sampling survey on intellectual disability in 0 approximately 6-year-old children in China.

OBJECTIVES: To understand the current status of intellectually disabled children and the prevalence of intellectual disability (ID) in children aged 0 approximately 6 years and its risk factors, and to provide scientific evidence to formulate relevant policies for helping intellectually disabled children. METHODS: Multiphase, stratified, unequal proportional and cluster sampling was adopted to investigate 60 124 children aged 0 approximately 6 years. All the children investigated were screened for ID using the Denver Developmental Screening Test, and those with positive screening test would be further diagnosed by varied specialists using the Gesell Developmental Inventory. RESULTS: In total, 560 of 60 124 children were diagnosed as intellectually disabled with an overall prevalence of 0.93%. Prevalence of ID was highest in children living in medium-developed areas with a prevalence of 1.20%, higher than in those living in developed areas (0.75%) and in underdeveloped areas (0.84%). It was higher in rural areas (1.03%) than in urban areas (0.83%), and higher in boys (1.01%) than in girls (0.84%). Prevalence of ID increased with the age of children and decreased with the educational level of their parents. CONCLUSIONS: The study suggested that ID is still prevalent in the children of China, and rehabilitation for them is lagging behind current needs. Early prevention of ID in children and pre-school education for them should be strengthened.

The impact on mothers of bringing up a child with intellectual disabilities: a cross-cultural study.

BACKGROUND: Most research into the impact on mothers of having a child with an intellectual disability has been done in Western cultures. These mothers are at increased risk of stress, along with poorer health and weakened family relationships. Nurses are well placed to support these mothers. OBJECTIVES: (1) To describe across three different cultures-Irish, Taiwanese and Jordanian-the inter-relationships among three indicators of maternal well-being. (2) To identify the coping strategies of mothers and the professional and informal supports available to them. (3) To identify the variables that have a negative impact on maternal well-being and possible moderating influences on them. DESIGN: A survey approach with three groups of self-selected mothers. PARTICIPANTS: The characteristics of the child determined the inclusion criteria; namely aged 5-18 years with a diagnosis of intellectual disability of such severity that the children attended special schools or centres. In each country, the special services within particular geographical areas were approached and all families known to them were given the opportunity to participate. In all 206 mothers agreed to participate. METHODS: Mothers were interviewed individually at home or in the day centre attended by their child. They completed various rating scales of known reliability and validity. In addition they described in their own words, the impact the child had on their lives and how they coped. RESULTS: In all three countries, mothers experienced poor mental health, increased levels of child-related stress and poorer family functioning which the qualitative data further illuminated. Their child's behaviour problems were a major factor in this. The impacts on mothers' well-being were not alleviated by access to professional supports or use of coping strategies. CONCLUSIONS: Health professionals need to adopt family-centred approaches that embrace the support needs of mothers. Similar strategies would apply across all cultures although they must be responsive to individual need.

Sociocultural studies of families of children with intellectual disabilities.

This article reviews recent sociocultural studies of families of children with intellectual disabilities to introduce the range of research conducted from this perspective and to highlight the methodological, conceptual, and theoretical contributions of this approach to the study of mental retardation. Sociocultural studies examine families within their cultural, historical, and sociopolitical contexts. This type of research is comparative across different cultural groups, but is not limited to such comparisons. Sociocultural studies use varied theories and methods, but they share a focus on families' coproduction of meanings and practices related to intellectual disability; families' responses and adaptations to disability; and how their understandings and experiences are shaped within larger social institutions and inequities. Sociocultural approaches take into account community contexts that matter to families with members with mental retardation or developmental delay, and they examine the broader systems that define and position individuals with disabilities and their families. As a whole, these studies provide a more experiential and holistic view of families' beliefs and adaptations within sociopolitical worlds, and offer new tools by which to study the families of children with developmental delays within and across different cultural groups.

Paul Braune confronts the National Socialists' "euthanasia" program.

On July 9, 1940, asylum director Paul Braune completed a twelve-page memorandum, or Denkschrift, on the National Socialists' T-4 "euthanasia" program. The memorandum identified three killing centers within a carefully planned, Reich-wide program and summarized what Braune's research had uncovered about the fate of asylum patients at various T-4 facilities. Braune estimated that several thousand disabled people had been murdered between February and June 1940. After Protestant church leaders formally submitted Braune's memorandum to the Reich Chancellery, Braune was arrested by the Gestapo-pursuant to a direct order by Reinhard Heydrich-for having "sabotaged measures of the state in an irresponsible way." Despite Braune's protest, the killing of German asylum patients continued unabated. This article shows what a determined German citizen, assisted by an extensive network of information sources, was able to learn about the "euthanasia" program during the first six months of its implementation, and reveals the formidable difficulties that opponents of the program faced in their efforts to stop the killing of disabled people.

The adaptation of mothers of children with intellectual disability in Lebanon.

In many Middle Eastern countries, including Lebanon, there is a stigma attached to families who have an intellectually impaired child. These families complain of isolation and lack of community resources that could help them cope with their circumstances to optimize the child's abilities. Health professionals and researchers should be cognizant of factors related to the process of stress adaptation to help families cope with their circumstances. The aim of this cross-sectional study was to identify factors that play a role in mothers' adaptation to the care of their intellectually impaired children. The results, based on a sample of 127 mothers from Lebanon, reveal that a high percentage of mothers had depressive symptoms. Multiple regression analysis demonstrates that by order of importance, the factors that determine maternal depression are family strain, parental stress, and family income. The conclusions about nursing implications from a cultural perspective are discussed and recommendations proposed.

Hispanic caregivers of adults with mental retardation: importance of family functioning.

Our aim in this study was to validate a stress-process model for Hispanic caregivers of adults with mental retardation that incorporates family functioning. The model postulates that maladaptive adult behaviors are related to poorer family relationships and higher levels of family burden, which in turn is related to caregiver psychological distress and self-reported health. The 153 Hispanic caregivers were interviewed in their homes with structured interviews and self-report measures. We analyzed cross-sectional data using structural equation modeling. The hypothesized model provided an excellent fit to the data. Also, family relationships mediated the relationship between maladaptive adult behaviors and family burden, and higher levels of family burden were related to greater caregiver distress. Acculturation was negatively related to caregiver distress.

Syndrome specificity and behavioural disorders in young adults with intellectual disability: cultural differences in family impact.

BACKGROUND: This study examined whether behaviour problems and adaptive behaviour of low functioning young adults, and well-being of their families, varied by diagnostic syndrome [intellectual disability (ID) only, cerebral palsy, Down syndrome, autism], as well as by cultural group. METHODS: Behaviour disorders in young adults with moderate to severe ID were assessed from information provided by 282 caregivers during in-home interviews. The sample consisted of 150 Anglo participants, and 132 Latino, primarily Spanish-speaking, participants drawn from Southern California. RESULTS: Behaviour disorders and maternal well-being showed the same pattern across disability syndromes. Autism was associated with the highest scores in multiple behaviour problem areas as well as maternal reports of lower well-being. Down syndrome was associated with the lowest behaviour problem scores and the highest maternal well-being. When behaviour problems were controlled for, diagnostic groups accounted for no additional variance in maternal stress or depression. The pattern of behaviour problems and well-being did not differ by sample (Anglo vs. Latino), although level on well-being measures did. Latina mothers reported significantly higher depression symptoms and lower morale, but also higher positive impact from their child than did Anglo mothers. CONCLUSIONS: Caregivers of young adults with autism report more maladaptive behaviour problems and lower personal well-being, or stress, relative to other diagnostic groups, regardless of cultural group. However, cultural differences exist in caregiver reports of depression, morale, and positive perceptions. Implications for service provision aimed at families of children with challenging behaviour problems are discussed in the context of culture.

An assessment of intellectual disability among Aboriginal Australians.

BACKGROUND: The health and well-being of Indigenous people is a significant global problem, and Aboriginal Australians suffer from a considerably higher burden of disease and lower life expectancy than the non-Indigenous population. Intellectual disability (ID) can further compromise health, but there is little information that documents the prevalence of ID among indigenous populations. This study provides information on ID among the Aboriginal population of Western Australia. METHODS: The Disability Services Commission (DSC) of Western Australia has maintained a statewide database of people with ID since 1953. Data on people of Aboriginal descent were extracted from the DSC database and linked to two other state-based databases, the Hospital Morbidity Data System and the Deaths Registry, with additional linkage to the National Death Index. The linked data were used to assess the prevalence, survival patterns and causes of death in Aboriginal people with ID. RESULTS: Although comprising 3.5% of the population, Aboriginal Australians represented 7.4% of all people registered for ID services. The level of ID was assessed as borderline or mild in 40.7% of cases, moderate in 19.9%, severe or profound in 12.1%, but had not been specified in 27.2% cases. Median survival was 55.1 years for men and 64.0 years for women, with a mean age at death (n = 102) of 19.6 years. The leading causes of death were respiratory diseases, diseases of the circulatory system, and accidents. CONCLUSIONS: The study presents unique population summary data for ID in the Aboriginal community of Western Australia. To provide appropriate prevention and intervention strategies, there is an urgent need for more detailed information on the prevalence and patterns of ID.

Cross-cultural study of quality of life indicators.

The concept of quality of life is increasingly being used internationally in the field of intellectual disabilities. We surveyed three respondent groups representing five geographical groupings on the importance and use of the 24 core quality of life indicators most commonly reported in the international quality of life literature. Results suggest (a) similar profiles on importance and use across respondent and geographical groups, but differences in the frequency per response category; (b) significant differences in mean quality of life importance and use scores for both respondent and geographic groupings; and (c) factors on importance and use generally grouped into eight core quality of life domains. Results are discussed in reference to the etic (universal) and emic (culture-bound) properties of the quality of life concept.