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.

Prevalence, Health and Resource Utilization, and Unmet Healthcare Needs of Native Hawaiian and Pacific Islander Children With Developmental Disabilities.

Little is known about health limitations and service utilization among the Native Hawaiian and Pacific Islander (NHPI) children with developmental disabilities (DDs) due to limited data. Our study examined the prevalence of DDs, health limitations, services used, and the unmet needs of NHPI children aged 3 to 17 years using cross-sectional data from the 2014 NHPI National Health Interview Survey. Results showed that prevalence of DDs among NHPI children was lower than American children of other races. DDs were negatively associated with health and functioning of NHPI children. There is a need to promote understanding of DDs among NHPI families and to inform public policy makers to identify appropriate intervention services for NHPI children.

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.

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.

Developmental Screening With Spanish-Speaking Families in a Primary Care Setting.

Cultural beliefs may influence parents' willingness to raise concerns on a developmental screener. Our study evaluated the performance of the Parents' Evaluation of Developmental Status (PEDS) in an urban community health center where 75% of families are Spanish speaking. Our primary outcome was the presence of parent-reported concerns either in the medical record or on the PEDS before the PEDS was introduced compared with after it became routine care (post-PEDS). Covariates included family language and child age, gender, and risk status. The adjusted odds of a concern being identified was 1.5 times greater in the post-PEDS period for Developmental concerns and 2.1 times greater for Behavioral concerns. There was no association with family language indicating that the PEDS performs equally well for English- and Spanish-speaking families. The systematic inclusion of developmental screening as part of culturally competent primary care may aid in reducing current disparities in the identification of developmental concerns.

Massage therapy improves the development of HIV-exposed infants living in a low socio-economic, peri-urban community of South Africa.

The aim of this study was to assess the effect of massage therapy on the growth and development of infants of HIV-infected mothers in a low socio-economic community in Cape Town. It was a prospective, randomised, controlled intervention trial that included massage therapy and control groups of HIV-infected mothers and their normal birth weight infants who were enrolled in the prevention of mother-to-child transmission (PMTCT) programme. Participants were recruited at the 6-week clinic visit and followed up every 2 weeks until their infants were 9 months of age. Mother-infant pairs in the massage therapy and control groups included 73 and 88 at 6 weeks and 55 and 58 at 9 months, respectively. Mothers in the intervention group were trained to massage their infants for 15 min daily. The socioeconomic status, immunity, relationship with the partner and mental pain of mothers; the infants' dietary intake, anthropometry and development (Griffiths Mental Development Scales); and haematological and iron status of mothers and infants were assessed at baseline and follow-up. Nine infants (5.3%) were HIV-infected on the HIV DNA PCR test at 6 weeks. Despite significantly higher levels of maternal mental pain, infants in the massage therapy compared to control group scored higher in all five of the Griffiths Scales of Mental Development and significantly higher in the mean quotient (p=0.002) and mean percentile (p=0.004) for the hearing and speech scale at 9 months. Based on the mean difference in scores, the massage therapy group showed greater improvement for all five scales compared to the control group. The mean difference in scores was significantly greater for the hearing and speech quotient (21.9 vs. 11.2) (p<0.03) and the general quotient percentile (19.3 vs. 7.7) (p=0.03) in the massage therapy compared to the control group. These scales remained significant when adjusting for the relationship with the partner and maternal mental pain. Both groups had lower scores in the performance scale at 9 months although this was significantly worse in the control compared to the massage therapy group when adjusting for maternal CD4 count, anaemia, relationship with the partner and mental pain. There were no significant differences in the anthropometric measurements between the two groups. In conclusion, based on the Griffiths Scales, massage therapy improved the overall development and had a significant effect on the hearing and speech and general quotient of HIV-exposed infants in this study.

Differences in adult day services center participant characteristics by center ownership: United States, 2012.

KEY FINDINGS: Data from the National Study of Long-Term Care Providers. In 2012, more than one-third of participants in adult day services centers were younger than 65. A higher percentage of participants in nonprofit centers than in for-profit centers were younger than 65. About one-half of participants in adult day services centers were non-Hispanic white persons. A higher percentage of participants in for-profit centers than in nonprofit centers were Hispanic or were non-Hispanic and of a race other than black or white. Almost one-third of adult day services center participants had Alzheimer's disease or other dementias, and about one-quarter had a developmental disability. A lower percentage of participants in for-profit than in nonprofit centers had Alzheimer's disease or other dementias or a developmental disability. The 4,800 adult day services centers nationwide provide a variety of services to their 273,200 participants, the majority of whom are older adults and women (1). The number of for-profit adult day services centers has grown in recent years (2). The 1,900 for-profit centers, representing 40% of centers nationally, served nearly one-half (47%) of center participants in 2012 (3). Using data from the National Study of Long-Term Care Providers, this report presents selected characteristics of adult day services center participants in 2012 and compares the characteristics of participants in for-profit centers with those in nonprofit centers.

Parental wellbeing of Iranian families with children who have developmental disabilities.

To date, most research with families who have a child with developmental disabilities has been undertaken in English speaking countries. Poorer health, allied with increased levels of stress has been commonly reported for mothers but less is known about the impact on fathers and on overall family functioning. This study aimed to document the correlates of these parental impacts with Iranian mothers and fathers who had children with either intellectual disabilities (ID) or with autism spectrum disorders (ASD). In all 121 parents (69 mothers and 52 fathers from 94 families) who had a child with a diagnosis of ADS, along with 115 parents of children with ID (83 mothers and 32 fathers from 101 families) volunteered to take part in the study. Each participant completed through interview standardised rating scales of parenting stress, emotional well-being, family functioning and satisfaction with caring role along with demographic information and details of informal supports. Structural Equation Modeling identified that family functioning was much poorer in families whose child had ASD and both mothers and fathers reported higher levels of stress. Poorer emotional well-being contributed to higher stress and was more frequent among mothers, single parents and those whose children had behaviour problems. Having other dependents living at home and more sources of informal support improved the emotional wellbeing of parents but not their stress or family functioning. Parents who derived greater satisfaction from their caring role tended to have better emotional health and less stress. Although the impact on Iranian parents of having a child with developmental disabilities is broadly similar to those of parents in other cultures, there are indications that children with ASD present distinct challenges to these families. The model derived in this study is a useful guide both for further research as well as family-centred interventions.

Chronic conditions, functional difficulties, and disease burden among American Indian/Alaska Native children with special health care needs, 2009-2010.

The purpose of this study was to determine the prevalence of chronic conditions and functional difficulties of American Indian/Alaska Native (AIAN) children with special health care needs (CSHCN). We conducted bivariate and multivariable analysis of cross-sectional data on 40,202 children from the 2009-2010 National Survey of Children with Special Health Care Needs aged birth through 17 years, including 1,051 AIAN CSHCN. The prevalence of AIAN CSHCN was 15.7 %, not significantly different from the prevalence of US white CSHCN (16.3 %). As qualifiers for special needs status among AIAN children the use of or need for prescription medication was the most frequent (70 %), compared to the lower rates of need for elevated service use (44 %) and emotional, mental, or behavioral treatment/counseling (36 %). Asthma (45 %), conduct disorder (18 %), developmental delay (27 %), and migraine headaches (16 %) were significantly more common chronic conditions among AIAN CSHCN compared to white CSHCN, as were functional difficulties with respiration (52 %), communication (42 %), anxiety/depression (57 %), and behavior (54 %). AIAN CSHCN were also more likely to have 3 or more chronic conditions (39 vs. 28 %, respectively) and 3 or more functional difficulties (70 vs. 55 %, respectively) than white CSHCN. Results indicated a greater impact on the daily activities of AIAN CSHCN compared to white CSHCN (74 vs. 63 %). Significantly greater disease burden among AIAN CSHCN suggests that care must be taken to ensure an appropriate level of coordinated care in a medical home to ameliorate the severity and complexity of their conditions.

Pediatrician identification of Latino children at risk for autism spectrum disorder.

BACKGROUND AND OBJECTIVES: Latino-white disparities in age at autism spectrum disorder (ASD) diagnosis may be modified by primary care pediatrician (PCP) practices and beliefs. The objectives of this study were to assess ASD and developmental screening practices, attitudes toward ASD identification in Latino children, and barriers to ASD identification for Latino children, in a sample of 267 California PCPs. METHODS: In mail-based PCP survey, we assessed rates of bilingual general developmental and ASD screening, perceptions of parent ASD knowledge in Latino and white families, reports of difficulty assessing for ASDs in Latino and white children, and perceptions of barriers to early ASD identification for Latinos. RESULTS: Although 81% of PCPs offered some form of developmental screening, 29% of PCPs offered Spanish ASD screening per American Academy of Pediatrics guidelines, and only 10% offered both Spanish general developmental and Spanish ASD screening per American Academy of Pediatrics guidelines. Most PCPs thought that Latino (English and Spanish primary family language) parents were less knowledgeable about ASDs than white parents. PCPs had more difficulty assessing ASD risk for Latino children with Spanish primary family language than for white children, even when the PCP conducted recommended ASD screening or had >25% Latino patients. The most frequent barrier to ASD identification in Latinos was access to developmental specialists. CONCLUSIONS: Multiple factors in the primary care setting may contribute to delayed ASD identification for Latinos. Promoting language-appropriate screening, disseminating culturally appropriate ASD materials to Latino families, improving the specialist workforce, and providing PCP support in screening and referral of Latino children may be important ways to reduce racial and ethnic differences in care.

Socioeconomic disadvantage and developmental delay among US children aged 18 months to 5 years.

BACKGROUND: Few studies have examined the relationship between sociodemographic factors and a population-based measure of developmental delay in US children. We identify sociodemographic factors associated with unlikely, probable and possible developmental delay in preschool US children using nationally representative data. METHODS: All children aged 18 months to 5 years in the 2007 National Survey of Children's Health were categorised into three groups based on the likelihood of developmental delay (unlikely delay, possible delay and probable delay) using a modified survey version of the Parents' Evaluation of Developmental Status questionnaire. Bivariate and multivariate multinomial logistic regressions were used to assess relations between sociodemographic variables and risk of developmental delay. RESULTS: Children had increased odds of probable delay (compared with unlikely delay) if they were older (adjusted OR (aOR)=1.41/additional year above the youngest age group (18 months-2 years), p<0.001), male (aOR=1.55, p<0.001), low birth weight (aOR=2.08, p<0.001), non-Hispanic black (aOR=1.50, p<0.01) or Hispanic in a non-English-speaking household (aOR=2.53, p<0.001) versus non-Hispanic white, had lower household income (aOR=1.33 for each decreasing category of poverty level, p<0.001), or received >10 h/week of care at another family's home (aOR=1.71, p<0.05). Only four characteristics (being older, male, low birth weight and Hispanic living in a non-English-speaking household) were associated with increased odds of possible delay compared with unlikely delay. CONCLUSIONS: Multiple factors, including demographic characteristics and indicators of social disadvantage, distinguish children with probable developmental delay from those unlikely to have developmental delay. Fewer factors identify children with possible delay.

Validation of rapid neurodevelopmental assessment for 2- to 5-year-old children in Bangladesh.

OBJECTIVE: Validate a tool to determine neurodevelopmental impairments (NDIs) in >2- to 5-year-old children in a country with limited child development expertise. METHODS: Rapid Neurodevelopmental Assessment (RNDA) is a tool designed to detect functional status and NDIs across multiple neurodevelopmental domains. Validity was determined in 77 children enrolled by door-to-door sampling in Dhaka and who were administered the RNDA by 1 of 6 testers (4 developmental therapists, 2 special education teachers) and simultaneously administered a test of adaptive behavior (AB; Independent Behavior Assessment Scale) and intelligence quotient (IQ) tests (Bayley Scales of Infant Development II, Stanford Binet Intelligence Scale, Wechsler Preschool and Primary Scales of Intelligence) by psychologists. RESULTS: Interrater reliability ranged from good to excellent. There were significant differences in AB in mean percentile scores on the Independent Behavior Assessment Scale for motor (P = .0001), socialization (P = .001), communication (P = .001), and full-scale (P = .001) scores in children with ≥1 NDI ("any NDI") versus no NDI. Significant differences in those with versus those without "any NDI" were found on IQ scores. Sensitivity and specificity for "significant difficulties" (defined as AB z-scores < -2 SDs and/or IQ <70) and "mild difficulties included" (AB z-scores < -1SD and/or IQ <85) were 90% and 60% and 80% and 76%, respectively. CONCLUSIONS: The RNDA validity results are promising for use by child care professionals in field and clinical settings, but the tool needs further replication and refinement for assessment of specific impairments of vision, hearing, and seizures.

Resilience in families of children with developmental disabilities.

This study aimed to identify strengths and resources associated with the adaptation of families from previously disadvantaged backgrounds in South Africa following the diagnosis of a child with a developmental disability. Data was collected from parents (N = 40), as family representatives, using 7 self-report questionnaires and an open-ended question. The results showed positive correlations between an acceptance of the situation, positive patterns of family communication, commitment to the family unit, a positive attitude toward new experiences and challenges, and family adaptation, whereas incendiary communication and the age of the child were found to be inversely correlated with family adaptation. The quality of family patterns of communication was found to be the most significant predictor of family adaptation. The findings can be used to enrich existing family interventions to promote family resilience and affirm the reparative potential of families.

Disparities in provider elicitation of parents' developmental concerns for US children.

OBJECTIVE: To examine factors associated with provider elicitation of parents' developmental concerns among US children. METHODS: The 2007 National Survey of Children's Health was used to examine factors associated with parents' reports of provider elicitation of developmental concerns in the previous 12 months. Independent variables included child characteristics, sociodemographic factors, insurance status, and having a medical home. RESULTS: One-half of US parents reported provider elicitation of developmental concerns. African-American (41%) and Latino (49% in households with English as the primary language and 33% with a non-English primary language) parents were significantly less likely than white parents (55%) to report elicitation of developmental concerns. With multivariate adjustment, African-American (odds ratio [OR]: 0.67 [95% confidence interval [CI]: 0.55-0.81]) and Latino (OR: 0.61 [95% CI: 0.44-0.84]) parents, compared with white parents, had significantly lower adjusted odds of provider elicitation of developmental concerns. Lack of insurance (OR: 0.61 [95% CI: 0.44-0.85]) and having a medical home (OR: 1.42 [95% CI: 1.21-1.67]) were associated with elicitation of developmental concerns. Parents of African-American and Latino children who received family-centered care had almost twice the odds of provider elicitation. For Latino parents in households with a non-English primary language, other medical home components, including having a personal provider (OR: 1.51 [95% CI: 1.08-2.11]) and a usual source of care (OR: 1.76 [95% CI: 1.13-2.74]), were significantly associated with elicitation of developmental concerns. CONCLUSIONS: Racial/ethnic and linguistic disparities exist in provider elicitation of developmental concerns. Addressing lack of insurance, medical homes, and specific medical-home components might reduce disparities.

Toward autonomy in love and work: situating the film "Yo, también" within the political project of disability studies.

This essay looks at the representation of disability in the recent Spanish film "Yo, también" through the lens of disability studies, understood as a political project. The film's portrayal of a character who is, like the actor who plays him, Europe's first university graduate with Down syndrome, is unique. Moreover, "Yo, también" provides the opportunity to assess the state of the struggle for rights for persons with disabilities both in the film's narrative arc and also in the wider Spanish (and global) society. Among other sources, specific articles of the United Nations's recent Convention on the Rights of People with Disabilities are incorporated into the essay. Both essay and film coincide in emphasizing the need to grant disabled populations greater autonomy in the spheres of love and work.

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.

Mothers of children with developmental disorders in the bedouin community in Israel: family functioning, caregiver burden, and coping abilities.

This preliminary study compares the family functioning, caregiver burden, and coping abilities between mothers of 300 children with developmental disorders and mothers of 100 children with no such disorders in the Bedouin community in Israel. The mothers completed the McMaster Family Assessment Device Scale, the Caregiver Burden Index, and the Sense of Coherence Scale. Mothers of children with developmental disorders reported lower family functioning, a higher caregiver burden, and a lower sense of coherence and thus lower coping abilities than mothers of children with no disorders. The study highlights the need to provide professional support for mothers of children with developmental disorders and to develop awareness and culturally appropriate intervention programs to enhance these mothers' coping abilities.

Child developmental assessment at two-years of age: data from the Pacific Islands Families Study.

AIMS: To describe the developmental profile of Pacific children living in New Zealand at two years of age in personal/social, language, cognitive, fine motor, and gross motor domains, and to examine how sociodemographic, maternal, and cultural factors influence children's development. METHODS: A cohort of Pacific infants born during 2000 in Auckland, New Zealand, was followed up at two-years postpartum. Maternal interviews were administered and the developmental status of the child was measured using the Australian Developmental Screening Test. RESULTS: Maternal child development reports are presented for 1,018 two-year-old children. The majority of children were identified as having no developmental delay. The prevalence of no delay in any of these five domains was 64.8%. For those children (35%) who were identified with possible overall delay the significant risk factors were child ethnicity, low birth weight, being breastfed for less than six weeks, and single parenthood. DISCUSSION: The powerful associations of these factors and developmental outcome suggest that interventions need to have the flexibility to address such issues within individual Pacific families and communities.

Parental preference or child well-being: an ethical dilemma.

An ethical dilemma that is not uncommon to encounter when caring for children occurs when parental preference does not appear to be in the child's best interest. Challenges facing the health care team are further amplified when the family's cultural background does not match that of the team. A case study will be used to illustrate the challenges of a pediatric palliative care ethical dilemma further complicated by cultural diversity. Review of the child's medical condition, patient/parent preferences, quality of life, and contextual features will be followed by an analysis and recommendations for resolution of this challenging situation.