Jinkuk Hong

Life course impacts of parenting a child with a disability.

We contrasted parents who had a child with a developmental disability, a serious mental health problem, and a normative comparison group with respect to parental attainment and well-being at mid-life. Data are from the Wisconsin Longitudinal Study, collected when the respondents were 18, 36, and 53 or 54, on average. Although similar at age 18, group patterns of attainment and well-being diverged thereafter. Parents of a child with a developmental disability had lower rates of employment, larger families, and lower rates of social participation but were similar to parents without a child with a disability in educational and marital status, physical health, and psychological well-being. Parents whose child had a serious mental health problem had normative patterns of educational and occupational attainment and marriage, but elevated levels of physical symptoms, depression, and alcohol symptoms at mid-life.

Daily Experiences Among Mothers of Adolescents and Adults with Autism Spectrum Disorder

In the present study, 96 co-residing mothers of adolescents and adults with an autism spectrum disorder (ASD) participated in an 8-day diary study and reported on their daily experiences. In comparison with a nationally representative sample of mothers of children without disabilities, mothers of adolescent and adult children with ASD spent significantly more time providing childcare and doing chores, and less time in leisure activities. Fatigue, arguments, avoided arguments, and stressful events were also more common among mothers of individuals with ASD. However, mothers of individuals with ASD reported similar levels of positive interactions and volunteerism as the comparison group. Daily experiences were subsequently related to well-being in both groups. These findings highlight the need for family support services.

Long-term effects of the death of a child on parents' adjustment in midlife.

The death of a child is a traumatic event that can have long-term effects on the lives of parents. This study examined bereaved parents of deceased children (infancy to age 34) and comparison parents with similar backgrounds (n = 428 per group) identified in the Wisconsin Longitudinal Study. An average of 18.05 years following the death, when parents were age 53, bereaved parents reported more depressive symptoms, poorer well-being, and more health problems and were more likely to have experienced a depressive episode and marital disruption than were comparison parents. Recovery from grief was associated with having a sense of life purpose and having additional children but was unrelated to the cause of death or the amount of time since the death. The results point to the need for detection and intervention to help those parents who are experiencing lasting grief.

Bidirectional Effects of Expressed Emotion and Behavior Problems and Symptoms in Adolescents and Adults With Autism

Expressed emotion measures the emotional climate of the family and is predictive of symptom levels in a range of medical and psychiatric conditions. This study extends the investigation of the effects of expressed emotion to families of individuals with autism. A sample of 149 mothers co-residing with their adolescent or adult child with autism over an 18-month period was drawn from a large multiwave longitudinal study. High expressed emotion was related to increased levels of maladaptive behavior and more severe symptoms of autism over time. Also, characteristics of the son or daughter influenced levels of maternal expressed emotion over time. Although autism is a complex genetic disorder, the effect of the family environment in shaping the behavioral phenotype should not be underestimated.

Prevalence of CGG Expansions of the FMR1 Gene in a US Population-Based Sample

The primary goal of this study was to calculate the prevalence of the premutation of the FMR1 gene and of the “gray zone” using a population‐based sample of older adults in Wisconsin (n = 6,747 samples screened). Compared with past research, prevalence was relatively high (1 in 151 females and 1 in 468 males for the premutation and 1 in 35 females and 1 in 42 males for the gray zone as defined by 45–54 CGG repeats). A secondary study goal was to describe characteristics of individuals found to have the premutation (n = 30, 7 males and 23 females). We found that premutation carriers had a significantly higher rate of divorce than controls, as well as higher rates of symptoms that might be indicative of fragile X‐associated tremor ataxia syndrome (FXTAS; numbness, dizziness/faintness) and fragile X primary ovarian insufficiency (FXPOI; age at last menstrual period). Although not statistically significant, premutation carriers were twice as likely to have a child with disability.

The Effect of Quality of the Relationship Between Mothers and Adult Children With Schizophrenia, Autism, or Down Syndrome on Maternal Well-Being: The Mediating Role of Optimism.

This article investigates the effects of the quality of the relationship between maternal caregivers and their adult child with disabilities on maternal well-being and whether this effect is mediated by dispositional optimism. Mothers caring for an adult child with Down syndrome (n=126), schizophrenia (n=292), or autism (n=102) were surveyed. Mothers of adults with schizophrenia and autism had better psychological well-being when the mother/adult child relationship was positive, but this effect was mediated totally or partially by optimism. For all 3 groups, optimism was related to better mental and physical health. The findings highlight the importance of dispositional optimism, a psychological resource that has been virtually ignored in studies of family caregivers of adults with disabilities.

The psychological consequences of multiple roles: The nonnormative case.

Occupying multiple roles has been shown to be a major predictor of psychological well-being. We investigated the effects of multiple roles in the nonnormative case: a sample of aging mothers of adult children with mental retardation. These women have been in the role of caregiver for up to five decades, in addition to occupying the range of roles normatively held in adulthood and old age. We found, using longitudinal analyses, that holding multiple roles in significantly and negatively related to depression in this sample, as in the general population. The effect of multiple roles remains significant even after the previous level of depression is controlled. These results support the role accumulation hypothesis predicting positive consequences of multiple roles on psychological well-being, even in this sample of older women who have had lifelong caregiving responsibilities.

Age and gender differences in the well-being of midlife and aging parents with children with mental health or developmental problems: report of a national study.

Using data from the Study of Midlife in the United States (MIDUS), this article examines: (1) the effect of having children with developmental or mental health problems on parents mental and physical health, (2) the extent to which this effect varies by parental age and gender, and (3) the effects of disability-related factors on the well-being of parents of children with disabilities. Compared to parents of non-disabled children, parents of disabled children experienced significantly higher levels of negative affect, marginally poorer psychological well-being, and significantly more somatic symptoms, controlling for sociodemographic variables. Mothers did not differ from fathers in their well-being. Older parents were significantly less likely to experience the negative effect of having a disabled child than younger parents, suggesting an age-related attenuation of the stress of non-normative parenting.

Psychosocial and Biological Markers of Daily Lives of Midlife Parents of Children with Disabilities

Using daily telephone interviews, 82 midlife parents (mean age = 57.4) of children with disabilities (mean age = 29.9) were compared with a closely matched sample of unaffected parents (N = 82) to elucidate the daily experience of nonnormative parenting. In addition, salivary cortisol samples were obtained to examine whether parents of children with disabilities had dysregulated diurnal rhythms and the extent to which the amount of time spent with children was associated with divergent patterns of cortisol expression. We found that parents of children with disabilities had similar patterns of daily time use and similar likelihood of positive daily events as the comparison group, but they had elevated levels of stress, negative affect, and physical symptoms, all reported on a daily basis. In addition, their diurnal rhythm of cortisol expression differed significantly from the comparison group, a pattern that was strongest for parents of children with disabilities on days when they spent more time with their children.

Accommodative coping and well-being of midlife parents of children with mental health problems or developmental disabilities.

This study examined how accommodative coping via flexible goal adjustment affects the wellbeing of midlife parents. Using data from the Wisconsin Longitudinal Study, a population-based study of midlife adults, the authors compared parents who have a child with a severe mental health problem, a child with a developmental disability, or a child with no chronic illness or disability. Overall, parents had better well-being (i.e., lower levels of depressive and physical symptoms, higher levels of environmental mastery and self-acceptance) if they used accommodative coping. This effect was stronger for parents of individuals with a severe mental health problem than for the comparison group.