Longitudinal changes in well-being of parents of individuals with developmental or mental health problems.

RATIONALE: A large body of work demonstrates the impact of caregiving burden on the well-being of parents of individuals with developmental conditions or mental health problems. However, a relative dearth of research examines this impact longitudinally into parents' older age. OBJECTIVE: The current study examines (1) longitudinal changes in the effect of having a child with a developmental or mental health problem on parental negative affect, psychological well-being, and somatic symptoms, (2) age and gender moderations on these effects, and (3) the unique impact of factors related to the child's condition. METHOD: This study employs hierarchical linear regression models to examine longitudinal survey data from midlife adults (N = 1,101) from two waves of the National Study of Midlife in the United States (MIDUS). RESULTS: Models revealed some evidence for age attenuation of the impact of caregiving stress. Parents of children with developmental problems still had higher negative affect, poorer psychological well-being, and more somatic symptoms on average than parents in a comparison sample, whereas parents of children with mental health problems only showed evidence of higher negative affect compared to this sample. Within-group analyses also revealed differences between each parenting group into later adulthood. CONCLUSIONS: Parents of individuals with developmental or mental health problems may be at risk for poorer well-being late in life. Yet, age and gender differences as well as diagnostic group differences nuance these findings.

FMR1 Low Zone CGG Repeats: Phenotypic Associations in the Context of Parenting Stress.

The FMR1 gene on the X chromosome has varying numbers of CGG repeats. The modal number is 30, and expansion to >200 results in fragile X syndrome, but the copy number extends down to 6. Past research suggests that individuals whose CGGs are in the "low zone" (LZ; defined here as ≤ 25 CGGs) may be more environmentally-reactive than those with normal range repeats (26-40 CGGs)-a gene x environment interaction. Using a population-based DNA biobank, in our primary analysis we compared 96 mothers with LZ CGG repeats on both alleles to 280 mothers who had CGG repeats in the normal range. Secondarily, we conducted parallel analyses on fathers. We investigated how parents in these two CGG repeat categories differentially responded to stress, defined as parenting a child with disabilities. Significant gene x environment interactions indicated that LZ mothers who had children with disabilities had greater limitations (in executive functioning, depression, anxiety, daily health symptoms, and balance) than LZ mothers whose children did not have disabilities. In contrast, mothers with normal-range CGG repeats did not differ based on stress exposure. For fathers, a similar pattern was evident for one phenotype only (hand tremors). Although on average LZ CGGs are not associated with compromised functioning, the average masks differential response to the environment.

Apolipoprotein ɛ4 Allele and Subjective Cognitive Functioning in Parents of Adults With Disabilities.

OBJECTIVES: Parents of individuals with disabilities face ongoing responsibilities of providing care and support for their children, even during the child's adulthood. Past research has shown that this caregiving role is linked to chronic stress and subsequent adverse health outcomes for parents, including impaired cognition. This study examines the impacts of genetic risk for cognitive impairment (apolipoprotein [APOE] ɛ4 allele) among parents of adults with disabilities and comparison parents whose adult children do not have disabilities. METHOD: We performed rank order regression analysis of data from the Wisconsin Longitudinal Study (2004-2006 and 2010-2012 surveys and DNA samples). Participants included parents of adults with disabilities (247 mothers and 159 fathers) and comparison parents whose adult children were not disabled (1,482 mothers and 954 fathers). RESULTS: Mothers who had adult children with disabilities and who were APOE ɛ4 carriers reported significantly declining levels of subjective cognitive functioning over time, but mothers of adults with disabilities who did not have the APOE ɛ4 allele did not manifest this change. Among comparison group mothers, cognitive change over time was not a function of their APOE ɛ4 carrier status. Fathers' cognitive function did not differ significantly by either parental status or APOE ɛ4 carrier status. DISCUSSION: The results show that older mothers of adults with disabilities are more susceptible to cognitive impairment than their age peers if they have the genetic risk factor of APOE ɛ4 allele.

Trajectories of Change in the Behavioral and Health Phenotype of Adolescents and Adults with Fragile X Syndrome and Intellectual Disability: Longitudinal Trends Over a Decade.

This study examined trajectories of daily living skills, behavior problems, body mass index (BMI), and health conditions spanning nearly a decade in adolescents and adults with fragile X syndrome (N = 134; age range at study end = 19-49 years), examining influences of sex and autism spectrum disorder (ASD) symptoms. Hierarchical linear modeling revealed early increases in daily living skills, with decreases at older ages. Behavior problems became less severe over time, with some increases at older ages. Individuals gained weight and had increasing health problems over time. Fewer ASD symptoms were associated with greater daily living skills and fewer behavior problems at study start. This study offers some of the first prospective quantitative analyses of behavioral and health life course trajectories in FXS.

Generativity and Well-Being of Midlife and Aging Parents With Children With Developmental or Mental Health Problems.

Parents who have a child with a developmental problem or mental disorder often provide support and assistance to their child throughout their lives, and the burden of caregiving can have an adverse impact on parents' mental and physical health. Using Erikson's theory as a framework, the present study investigated generativity as a moderator of the effects of parenting a child with a disability on parents' well-being during mid- to late life. Using data from the study of Midlife in the United States, we identified 220 parents who had a child with a disability and 3,784 parents whose children did not have a disability. Regression analyses showed that the effect of parenting a child with a disability on negative affect, positive affect, and physical health was conditional on both parental gender and generativity, with mothers experiencing greater adverse effects of parenting but showing a benefit from high levels of generativity.

Effects of parenting adults with disabilities on later-life health: The role of intergenerational ambivalence.

According to family systems theory, strains from parenting an adult with disabilities may spill over to parents' relationships with their other children and disrupt family dynamics and their well-being in later-life. This study examined whether parental ambivalence toward their nondisabled children is greater in families of adults with disabilities (developmental disabilities [DD] or serious mental illnesses [SMI]) than families without any adult children with disabilities. The study also investigated whether ambivalence mediates the associations between having an adult child with DD or SMI and parents' health. Data were from the 2011 Wisconsin Longitudinal Study in which aging parents (Mage = 71; n = 6,084) were asked about their relationship with each of their adult children. Multilevel regression models and multilevel structural equation models were estimated to analyze the data. Our findings showed that parents of an adult with SMI felt greater ambivalence toward their nondisabled adult children than comparison group parents of adult children without disabilities, whereas no significant differences were found between parents of an adult child with DD and comparison group parents. Parental ambivalence toward their nondisabled adult children played a significant indirect role in the negative association between having a child with SMI and parental physical and mental health. The findings have implications for clinical practice with aging families of adults with disabilities and suggest the need for additional research to better understand intergenerational parent-adult child dynamics in these families. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

Positive Emotional Support in Premutation Carrier Mothers of Adolescents and Adults With Fragile X Syndrome: Gene by Environment Interactions.

We examined the benefit of emotional support on daily health in premutation carrier mothers of adolescents and adults with fragile X syndrome (n = 114), and whether this benefit was moderated by the mother's genetic status (FMR1 CGG repeat length). In an 8-day daily diary, maternal daily health was assessed subjectively through self-reported number of physical health symptoms and physiologically via cortisol awakening response. Multilevel lagged-day models indicated that premutation carrier mothers with midrange CGG repeats derived less health benefit from a day with high positive emotional support than those with lower or higher numbers of repeats within the premutation range. The data support the influence of both genetic and environmental influences on the health of this population.

Mortality in parents after the death of a child.

OBJECTIVE: The death of a child is a traumatic stressor that takes a toll on the health of parents. This study examined long-term impacts of the death of a child on the risk of early mortality in bereaved parents. In a follow-up analysis, a twin subsample was analyzed to examine potential genetic confounding. METHOD: We analyzed data from the Midlife in the United States (MIDUS) study. The primary sample consists of two groups of MIDUS 2 participants (2004-06); (1) parents who experienced the death of a child prior to MIDUS 2 (n = 451) and (2) comparison parents who had not experienced death of any children (n = 1804) (mean age = 63). We also analyzed 52 twin pairs in which one twin experienced the death of a child and 271 twin pairs in which both twins had all living children. Mortality status of parents was assessed in 2017. RESULTS: Parents who had experienced the death of a child had a 32% higher likelihood of early mortality (defined as dying earlier than life expectancy) than their peers who did not have any deceased children, and they were more likely to die of heart disease. Analyses of the twin subsample revealed significantly lower concordance for early mortality among the pairs with a bereaved twin than among control twins, consistent with non-genetic effects. CONCLUSIONS: The findings suggest that the death of a child has lasting impacts on the risk of early mortality in bereaved parents. This study provides the first U.S. estimate of bereavement effects on mortality extending through the parents' full life course, with significant public health implications. In addition, analysis of concordance of early death rates in the twin subsample suggests the impact on mortality of parental bereavement, net of genetic factors.

Loss in services precedes high school exit for teens with autism spectrum disorder: A longitudinal study.

The present longitudinal study investigated changes in service receipt and unmet service needs spanning 14 years before and after high school exit in a large community-based sample of individuals with autism spectrum disorder (ASD) (n = 204), of whom 59% had co-occurring intellectual disability (ID). Using multilevel models, potential discontinuity of service patterns at the point of high school exit was examined, as well as the rate of change in services received and needed during the high school years and into the post-high school period. Differences between those with and without ID were probed. Study findings indicated that overall, sample members experienced a reduction in receipt of services during high school, particularly for those without co-occurring ID. After high school exit, sample members experienced a decline in services received; for those without ID, there was a continuous rate of loss of services after leaving high school but for those with ID, there was a sharp decline in services received. Unmet service needs increased right after high school exit for both those with and without ID. These patterns reflect loss of entitlement for services that accompanies high school exit, and the limited availability of adult services for individuals with ASD. This study documented not only the post-high school service cliff that has been the subject of much concern, but also that the loss of services begins long before high school exit and that subgroups of the population with ASD are particularly vulnerable. Autism Res 2019, 12: 911-921. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: In this research, we studied changes in the number of services received before and after high school exit in a large sample of individuals with autism spectrum disorder (ASD). With each passing year during high school, individuals with ASD received fewer services. At the time of high school exit, there was a sharp drop in the number of services received, particularly for those with co-occurring intellectual disability. This study found not only that there is a post-high school service cliff, but also that the loss of services begins long before high school exit.

Mortality in individuals with autism spectrum disorder: Predictors over a 20-year period.

Research has shown that individuals with autism spectrum disorder have higher rates of health problems throughout childhood, adolescence, and adulthood, and that this may result in elevated risk of early mortality. This study reported the rate, timing, and causes of death in a large community-based cohort of adolescents and adults with autism spectrum disorder (n = 406) over a 20-year period (1998-2018) and identified predictors of mortality. Over this period, 6.4% of individuals died at an average age of 39 years. Causes of death included chronic conditions (such as cancer and heart disease), accidents (such as choking on food and accidental poisoning), and health complications due to medication side effects. Even after controlling for age and health status, significant predictors of mortality were early childhood levels of impairments in social reciprocity and high levels of functional impairments at the start of the study period. The results suggest the importance of social engagement and functional self-sufficiency across the life course, as well as adequate access to health care for individuals with autism spectrum disorder.

Validating psychosocial pathways of risk between neuroticism and late life depression using a polygenic score approach.

Neuroticism is a stable and heritable personality trait that is strongly linked to depression. Yet, little is known about its association with late life depression, as well as how neuroticism eventuates into depression. This study used data from the Wisconsin Longitudinal Study (WLS; N = 4,877) to examine the direct and indirect effects of neuroticism on late life depression at 3 points in the life course-ages 53, 64, and 71-via stressful life events (i.e., independent and dependent) and social supports measured across adulthood and into later life. Neuroticism was assayed using multiple methods, including self-report measures (phenotypic model) and a polygenic score (polygenic model) informed by a meta-analytic genome-wide association study. Results indicated that the phenotypic model of neuroticism and late life depression was partially mediated via dependent stressful life events experienced after the age of 53 and by age 64 social support. This association was replicated in the polygenic model of neuroticism, providing key evidence that the findings are robust. No indirect effects emerged with respect to age 53 social support, age 71 social support, adult dependent stressful life events (experienced between age 19 and 52), and adult and late life independent stressful life events in either the phenotypic or polygenic models as they pertained to late life depression. Results are consistent with previous findings that individuals with high neuroticism may be vulnerable to late life depression through psychosocial risk factors that are, in part, attributable to their own personality. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Friendships and social participation as markers of quality of life of adolescents and adults with fragile X syndrome and autism.

Friendships and social participation are key domains of quality of life for individuals with intellectual disabilities. This study examined the friendships, social and recreational activities, and family social networks of individuals with intellectual disabilities from two distinct diagnostic groups: individuals diagnosed with fragile X syndrome (n = 81) compared with those diagnosed with autistic disorder (n = 226). Within each diagnostic group, individuals in two developmental stages were compared: adolescence and adulthood. Quality of life in friendships and social participation domains was notably low for individuals with fragile X and those with autism. Individuals with fragile X had more friendships and a less negative social impact on the family than individuals with autism. Across both groups, adolescents spent less time with friends and neighbors, and more time in exercising, than did adults.

Unaffected siblings of adolescents and adults with fragile X syndrome: Effects on maternal well-being.

The present study investigated the effects of children without disabilities on maternal physical and mental health in families with adolescents or adults with fragile X syndrome. Mothers with the FMR1 premutation (N = 87) reported on behavior problems and functional limitations of their adolescent or adult child with fragile X syndrome and their own physical and mental health. Mothers also provided a blood sample to determine FMR1 CGG repeat length. The proportion of unaffected children in the family significantly buffered the effect of both child behavior problems and functional limitations on maternal self-rated health, such that having a higher proportion of unaffected children in the family had a protective effect on maternal health when the target child had more severe behavior problems and functional limitations. There was a similar buffering process for maternal depressive symptoms but at a trend level. Additionally, maternal CGG repeat length had a significant curvilinear association with self-rated health, indicating that mothers with midrange repeat lengths reported the poorest health, whereas mothers with lower and higher repeat lengths in the premutation range reported better health. The data suggest that unaffected children in the family may be an important resource for premutation carrier mothers. Findings are consistent with previous research indicating that mothers with varying levels of genetic liability have variable risk for health problems. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Health of parents of individuals with developmental disorders or mental health problems: Impacts of stigma.

OBJECTIVE: Parents of individuals with developmental disorders or mental health problems often provide life-long care and support to their children, which negatively affects their health in part due to chronic stress. This study aimed to examine the experience of stigma as a source of chronic stress among parents of individuals with developmental disorders or mental health problems and the effect of stigma on parental health outcomes. METHOD: Using data from the Survey of Midlife in the United States (MIDUS 2 and 3), we constructed a sample for a longitudinal analysis including 128 parents of individuals with developmental disorders (e.g., autism, cerebral palsy, epilepsy, Down syndrome, intellectual disabilities, brain injury, ADD/ADHD) or mental health problems (e.g., bipolar disorder, schizophrenia, major depression) and 2256 parents whose children were nondisabled. RESULTS: Parents who had children with developmental disorders or mental health problems prior to the beginning of the study (i.e., at MIDUS 1) reported higher levels of stigma related to embarrassment/shame and daily discrimination than parents of nondisabled individuals ten years later at MIDUS 2, which in turn were associated with poorer parental health outcomes (poorer self-rated health and a greater number of chronic conditions) nearly a decade after that at MIDUS 3. CONCLUSIONS: The findings suggest that the stigma associated with parenting a child with disabilities may be one mechanism that places such parents at risk for poor health. Efforts to alleviate the stigma associated with developmental disorders or mental health problems may have beneficial effects on health of parents of individuals with such conditions.

Health Profiles of Mosaic Versus Non-mosaic FMR1 Premutation Carrier Mothers of Children With Fragile X Syndrome.

The FMR1 premutation is of increasing interest to the FXS community, as questions about a primary premutation phenotype warrant research attention. 100 FMR1 premutation carrier mothers (mean age = 58; 67-138 CGG repeats) of adults with fragile X syndrome were studied with respect to their physical and mental health, motor, and neurocognitive characteristics. We explored the correlates of CGG repeat mosaicism in women with expanded alleles. Mothers provided buccal swabs from which DNA was extracted and the FMR1 CGG genotyping was performed (Amplidex Kit, Asuragen). Mothers were categorized into three groups: Group 1: premutation non-mosaic (n = 45); Group 2: premutation mosaic (n = 41), and Group 3: premutation/full mutation mosaic (n = 14). Group 2 mothers had at least two populations of cells with different allele sizes in the premutation range besides their major expanded allele. Group 3 mothers had a very small population of cells in the full mutation range (>200 CGGs) in addition to one or multiple populations of cells with different allele sizes in the premutation range. Machine learning (random forest) was used to identify symptoms and conditions that correctly classified mothers with respect to mosaicism; follow-up comparisons were made to characterize the three groups. In categorizing mosaicism, the random forest yielded significantly better classification than random classification, with overall area under the receiver operating characteristic curve (AUROC) of 0.737. Among the most important symptoms and conditions that contributed to the classification were anxiety, menopause symptoms, executive functioning limitations, and difficulty walking several blocks, with the women who had full mutation mosaicism (Group 3) unexpectedly having better health. Although only 14 premutation carrier mothers in the present sample also had a small population of full mutation cells, their profile of comparatively better health, mental health, and executive functioning was unexpected. This preliminary finding should prompt additional research on larger numbers of participants with more extensive phenotyping to confirm the clinical correlates of low-level full mutation mosaicism in premutation carriers and to probe possible mechanisms.

Using machine learning to identify patterns of lifetime health problems in decedents with autism spectrum disorder.

Very little is known about the health problems experienced by individuals with autism spectrum disorder (ASD) throughout their life course. We retrospectively analyzed diagnostic codes associated with de-identified electronic health records using a machine learning algorithm to characterize diagnostic patterns in decedents with ASD and matched decedent community controls. Participants were 91 decedents with ASD and 6,186 sex and birth year matched decedent community controls who had died since 1979, the majority of whom were middle aged or older adults at the time of their death. We analyzed all ICD-9 codes, V-codes, and E-codes available in the electronic health record and Elixhauser comorbidity categories associated with those codes. Diagnostic patterns distinguished decedents with ASD from decedent community controls with 75% sensitivity and 94% specificity solely based on their lifetime ICD-9 codes, V-codes, and E-codes. Decedents with ASD had higher rates of most conditions, including cardiovascular disease, motor problems, ear problems, urinary problems, digestive problems, side effects from long-term medication use, and nonspecific lab tests and encounters. In contrast, decedents with ASD had lower rates of cancer. Findings suggest distinctive lifetime diagnostic patterns among decedents with ASD and highlight the need for more research on health outcomes across the lifespan as the population of individuals with ASD ages. As a large wave of individuals with ASD diagnosed in the 1990s enters adulthood and middle age, knowledge about lifetime health problems will become increasingly important for care and prevention efforts. Autism Res 2018, 11: 1120-1128. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study looked at patterns of lifetime health problems to find differences between people with autism who had died and community controls who had died. People with autism had higher rates of most health problems, including cardiovascular, urinary, respiratory, digestive, and motor problems, in their electronic health records. They also had lower rates of cancer. More research is needed to understand these potential health risks as a large number of individuals with autism enter adulthood and middle age.

Lifelong Parenting of Adults With Developmental Disabilities: Growth Trends Over 20 Years in Midlife and Later Life.

This research examined how parenting adults with developmental disabilities affects parental well-being beyond midlife and into old age. Parents of adults with developmental disabilities ( n = 249) and parents of adults without disabilities ( n = 9,016), studied in their early 50s and mid-60s, were longitudinally tracked into their early 70s. Compared to parents of adults without disabilities, parents of adults with disabilities showed a pattern of normative functioning in their 50s, followed by poorer well-being in their mid-60s, and further declines in health and well-being into the early 70s. Aging parents who co-resided with their adult child with disabilities were particularly vulnerable, experiencing a steeper increase in depressive symptoms and body mass index (BMI) than parents whose child with disabilities lived away from home.

Transitioning Together: A Multi-family Group Psychoeducation Program for Adolescents with ASD and Their Parents.

Currently there are few evidence-based programs available for families of individuals with ASD during the transition to adulthood. The present study provided a preliminary evaluation of a multi-family group psychoeducation intervention using a randomized waitlist control design (n = 41). Families in the intervention condition participated in Transitioning Together, an 8-week program designed to reduce family distress and improve social functioning for adolescents. Findings indicated significant improvements in parental depressive symptoms and problem solving from pre- to post-intervention for parents in the intervention condition but not for parents in the control condition. Social interactions also improved for youth in the intervention condition relative to controls. Parents reported satisfaction with the program and particularly valued the opportunity to interact with other families.

The Impact of the Great Recession on Midlife and Older parents of Individuals With a Mental Health Problem or a Developmental Disability.

Background and Objectives: Parents of sons and daughters with disabilities have ongoing financial burdens and vulnerability due to the demands of caregiving responsibilities and their related direct and indirect costs. This study aims to investigate whether midlife and older parents of individuals with a mental health problem or a developmental disability were particularly vulnerable to the impact of the recession. Research Design and Methods: The data were drawn from Midlife in the United States (MIDUS), a longitudinal survey of a national probability sample in the United States, Waves II (2004-2006) and III (2013-2014; 84 parents of individuals with a mental health problem, 98 parents of individuals with a developmental disability, and 2,029 parents of individuals without any conditions as a comparison group). Results: The findings suggest that the midlife and older parents whose son or daughter had a mental health problem experienced more recession impacts than comparison parents, even after controlling prerecession financial status and sociodemographic characteristics. Discussion and Implications: The results indicate the need for policies that provide effective financial support and reduce restrictions on health service access in order to relieve the financial burden experienced by midlife and older parents of individuals with a mental health problem.

Factors associated with sustained community employment among adults with autism and co-occurring intellectual disability.

Sustaining community employment is a challenge for adults with autism spectrum disorders, especially for those who have co-occurring intellectual disability, but factors contributing to this employment outcome have not been fully evaluated. This study utilized longitudinal data to explore the impact of contextual influences, family factors, and individual characteristics on sustained employment over approximately 18 months ( N = 105). Very few adults with autism spectrum disorder and intellectual disability achieved sustained employment (14.3%). The results indicated that more independent daily living skills, a higher family income, a larger maternal social network, an inclusive school environment in early childhood, and currently living in an area with a larger population size were associated with significantly greater odds of sustaining employment. Follow-up analyses suggested that managing personal care is particularly important for employment.