Richard C. Urbano

Divorce in families of children with Down syndrome: a population-based study.

In this study, we examined the nature, timing, and correlates of divorce in families of children with Down syndrome (647), other birth defects (10,283) and no identified disability (361,154). Divorce rates among families of children with Down syndrome were lower than in the other two groups. When divorce did occur in the Down syndrome group, however, a higher proportion occurred within the first 2 years after the childs birth. Mothers and fathers of children with Down syndrome were much more likely to divorce if they were younger, had not graduated from high school, and if fathers were less educated and lived in a rural area. Few effects on divorce were noted for a variety of family structure variables.

Predictors of Future Caregiving by Adult Siblings of Individuals with Intellectual and Developmental Disabilities.

With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving expectations. Siblings expected to assume greater caregiving responsibility for their brother or sister with disabilities if they were female, had closer relationships with and lived closer to their brother or sister with intellectual and developmental disabilities, and were the lone sibling without a disability. Siblings who expected to assume higher levels of caregiving had parents who were currently more able to care for their brother or sister with disabilities. With a better understanding of who intends to fulfill future caregiving roles, support can be provided to these siblings.

Adult female and male siblings of persons with disabilities: Findings From a national survey

In this study, the authors used a national, Web-based survey to examine female and male siblings of individuals with disabilities. More than 1,160 adult siblings completed a 163-question survey about themselves, their siblings, and their sibling relationships. Most respondents reported fairly close contact with their siblings and positive sibling relationships, good health, and benefits from being a sibling to a brother-sister with disabilities. Compared with men, women reported benefiting more from the sibling relationship. Relative to the U.S. population, female (though not male) siblings married later and divorced less often, and these women had their first child at later ages. Implications are discussed regarding future research and service needs.

Determining the amount, timing and causes of mortality among infants with Down syndrome

OBJECTIVE To examine the amount, timing and causes/correlates of infant mortality among newborns with Down syndrome. METHODS Using the Tennessee Department of Health Birth, Hospital Discharge and Death records, infants were identified who were born with Down syndrome from 1990 to 2006. Those who died during the first year were separated into three groups (first day death, neonatal mortality, post-neonatal mortality) and data from the Birth and Death records were used to compare the three death groups and the survival group on correlates of mortality. RESULTS Of 1305 infants born in Tennessee with Down syndrome from 1990 to 2006, 97 died within the first year, for a mortality rate of 74 per 1000. Most Down syndrome infant deaths occurred during the post-neonatal period (56%), although many occurred during the first day (27%). Newborns who died during the first day had significantly lower birthweight, 5-min Apgar scores and gestational lengths, whereas those who died in the post-neonatal period had significantly more heart-related causes of death (all Ps < 0.001). No associations were found in this sample between increased infant mortality and maternal age, education, race, marital status or familial urban residence. CONCLUSIONS Infants with Down syndrome experience high rates of mortality occurring at three distinct times during the first year. These groupings are tied to specific, different causes of death.

Involvement in Transition Planning Meetings Among High School Students With Autism Spectrum Disorders

Although students with autism spectrum disorders (ASD) are least likely to attend and participate in transition planning meetings, little is known about factors related to their involvement. Using a national data set, we conducted regressions to identify predictors of the involvement of 320 youth with ASD. Attendance positively related to higher expressive language skills, greater time spent in general education, and more frequent discussions about postschool plans at home. Attendance negatively related to greater parent involvement at school. Active participation was shown by students who had higher self-advocacy skills, spent more time in general education, and more often discussed postschool plans at home. Active participants were also more likely to be younger and Caucasian. Implications for research and practice are discussed.

Deaths Among Children, Adolescents, and Young Adults with Down Syndrome

BACKGROUND Although life expectancies in Down syndrome (DS) have doubled over the past 3-4 decades, there continue to be many early deaths. Yet, most research focuses on infant mortality or later adult deaths. MATERIALS AND METHODS In this US study, hospital discharge and death records from the state of Tennessee were linked to examine 2046 hospitalized individuals with DS (85 died) in three age groups: children (1-9), adolescents (10-19) and young adults (20-29). RESULTS Most deaths occurred to young adults, while children had the most hospitalizations. Leading causes of death were cardiovascular and pulmonary conditions, and patients who died had longer hospital stays. Proportions of female deaths rose in young adulthood, and disproportionately more African Americans died at each age period. CONCLUSION Mortality is high among young adults with DS. Special vigilance is needed for individuals with DS who are female, African American and in their 20s.

Chapter 5 Using Large-Scale Databases to Examine Families of Children with Intellectual and Developmental Disabilities

Abstract In this chapter, we argue for the increased use of large-scale databases to examine families of individuals with disabilities. To date, three main approaches have been employed. First, researchers have analyzed data from among the wide array of national surveys that have been supported by the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), US Census Bureau, Department of Education, and other (mostly federal) agencies. In the second approach, national Vital Statistics records have been examined, including information about all of the United States’ births or deaths in a particular calendar year. In the third approach, examinations have been more targeted to all families of children or adults with disabilities residing in a particular city, state, region, or area. Though each has its own strengths and weaknesses, all three large-scale approaches can address many questions about families of children and adults with disabilities. We end this chapter by providing two examples of how we have used Tennessee administrative data sets to answer questions about the structure and characteristics of families of children with Down syndrome; we also discuss continuing issues concerning the use of large-scale databases to tell us about the nature and functioning of families of individuals with disabilities.

Subsequent births in families of children with disabilities: using demographic data to examine parents' reproductive patterns.

The authors determined family reproductive patterns after the birth of a child with (vs. without) a disability. Using Tennessee birth records, the authors examined families of children with Down syndrome (N  =  1,123), spina bifida (N  =  368), and population group (N  =  734,189). Families of children with Down syndrome and with spina bifida were more likely to have subsequent children and larger family sizes than the population group. When a 1st-born target child was born, 28.8% of families had a 2nd child in the population group compared with 37.1% and 45.7% when the child had spina bifida or Down syndrome, respectively. Families of children with disabilities were more likely to have subsequent children regardless of maternal race, marital status, and educational level.

Record Linkage: A Research Strategy for Developmental Epidemiology**

Publisher Summary Calendar time constitutes the central dimension upon which human development progresses; it is a limiting factor for developmental researchers. Creative cross‐sectional and cross‐sequential research designs have been invented to compress time by combining short‐term longitudinal and cross‐sectional data. Combined use of data and record linkage can effectively compress time and efficiently study full life‐span development. The electronic recording and linkage of life events allows identifying important risk and protective factors that influence human developments, within the academic lifetime of a developmental researcher. With the affordable technology available at the desktop, developmental epidemiologists evaluate hundreds of variables, over millions of people, across long periods. Using record linkage technology leads the way to a better understanding of human development and helps to understand, treat, and develop effective policies for children with mental retardation/developmental disabilities (MR/DD) and their families.

What's Age Got to Do with It? Implications of Maternal Age on Families of Offspring with Down Syndrome

Abstract This paper assesses the implications of advanced maternal age on children and adults with Down syndrome and their families. From national and Tennessee-based data, mothers continue to be (on average) 4–5 years older at the birth of newborns with (vs. without) Down syndrome, with more mothers giving birth above age 35, fewer during their teens and early-to-mid 20s. Increased maternal age relates to higher levels of formal education, to more often being married at childbirth, and to less often divorcing. In population studies, more educated mothers also more often work outside the home, have husbands who actively participate in childrearing, and have families that provide their offspring greater financial and social resources. Though rarely examined, maternal-age correlates should also apply to persons with Down syndrome and their families. During childhood, more often having older, more educated parents—and less often having younger, less educated parents—should relate to more accurate caregiver assessments of the child’s development; increased access to available services; and enhanced abilities to benefit from services. But once adults with Down syndrome reach their mid-40s, having parents who are 30+ years older may result in simultaneous health declines for these adults and for their parents, causing a pile-up of caregiving challenges for the family’s adult siblings. Maternal age has much to do with offspring, parent, and sibling functioning during the offspring with Down syndrome’s childhood and adult years.