Jan S. Greenberg

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.

The Relative Risk and Timing of Divorce in Families of Children With an Autism Spectrum Disorder

We compared the occurrence and timing of divorce in 391 parents of children with an autism spectrum disorder (ASD) and a matched representative sample of parents of children without disabilities using a survival analysis. Parents of children with an ASD had a higher rate of divorce than the comparison group (23.5% vs. 13.8%). The rate of divorce remained high throughout the sons or daughters childhood, adolescence, and early adulthood for parents of children with an ASD, whereas it decreased following the sons or daughters childhood (after about age 8 years) in the comparison group. Younger maternal age when the child with ASD was born and having the child born later in the birth order were positively predictive of divorce for parents of children with an ASD. Findings have implications for interventions focused on ameliorating ongoing and long-term marital strains for parents of children with an ASD.

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.

Economic implications of caregiving at midlife: comparing parents with and without children who have developmental disabilities.

We compared the economic well-being and maternal employment of parents whose children did or did not have developmental disabilities. This prospective study is a secondary analysis of data from the Wisconsin Longitudinal Study, collected when respondents were aged 18, 36, and 53, on average. Although the two groups were similar at age 18, income and savings differed markedly by age 53, but statistically significant differences were not found on other measures. Mothers of children with disabilities were less likely to have job spells lasting more than 5 years and had lower earnings when they were 36 years old. Further, there was a trend for them to be less likely to have full-time jobs as their children grew older.

A Comparison of Coping Strategies of Aging Mothers of Adults With Mental Illness or Mental Retardation

Differences in coping by 105 aging mothers of adults with mental illness and 389 similar mothers of adults with mental retardation were investigated. Although no differences in problem-focused coping were found, mothers of adults with mental illness used more emotion-focused coping, which predicted greater maternal depression. For mothers of adults with retardation, depressive symptoms were a function of their childs behavior problems, although this source of stress was buffered by coping. For mothers of adults with mental illness, depression was a function of caregiving demands, but coping did not buffer the effects of stress. Explanations for findings include maternal perceptions of the context of care, of her control over the disability, and her caregiving efficacy.

Trajectories of Emotional Well-Being in Mothers of Adolescents and Adults with Autism.

Raising an adolescent or adult child with a developmental disability confers exceptional caregiving challenges on parents. We examined trajectories of 2 indicators of emotional well-being (depressive symptoms and anxiety) in a sample of primarily Caucasian mothers (N = 379; M age = 51.22 years at Time 1) of adolescent and adult children with an autism spectrum disorder (ASD; M age = 21.91 years at Time 1, 73.2% male). We also investigated within-person associations of child context time-varying covariates (autism symptoms, behavior problems, residential status) and maternal context time-varying covariates (social support network size and stressful family events) with the trajectories of emotional well-being. Data were collected on 5 occasions across a 10-year period. Average patterns of stable (depressive symptoms) and improved (anxiety) emotional well-being were evident, and well-being trajectories were sensitive to fluctuations in both child and maternal context variables. On occasions when behavior problems were higher, depressive symptoms and anxiety were higher. On occasions after which the grown child moved out of the family home, anxiety was lower. Anxiety was higher on occasions when social support networks were smaller and when more stressful life events were experienced. These results have implications for midlife and aging families of children with an ASD and those who provide services to these families.

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.

Change in Depressive Symptoms Among Daughter Caregivers: An 18-Month Longitudinal Study

This longitudinal study investigates, over an 18-month period, the caregiving experience of a probability sample of 115 daughters who provided care to an aging parent. The levels of depressive symptoms manifested by these daughters were relatively low, with only 23.5% scoring in the clinical range during the study. Nevertheless, there was substantive change in depressive symptoms among the daughters during the 18 months. Daughters with higher levels of mastery were more likely to use problem-focused coping strategies, which led to reductions in depression, whereas daughters with lower levels of mastery were more likely to use emotion-focused coping, which led to increased levels of depression. Mastery was higher when the caregiving role was shared with a sibling: it was lower if the daughter had other caregiving responsibilities and if the parent care recipient had elevated levels of behavior problems.

Siblings of Adults with Mental Retardation or Mental Illness: Effects on Lifestyle and Psychological Well-Being.

Siblings of Adults With Mental Retardation or Mental Illness: Effects on Lifestyle and Psychological Well-Being* Marsha Mailick Seltzer**, Jan S. Greenberg, Marty Wyngaarden Krauss, Rachel M. Gordon, and Katherine Judge Siblings of adults with mental retardation were contrasted with siblings of adults with serious mental illness with respect to (1) the pervasiveness of the impact of the brother or sister on the siblings life, (2) the closeness of their current relationship and frequency of contact with the brother or sister with the disability, and (3) the factors related to the siblings level of psychological well-being. It was found that siblings of adults with mental retardation were significantly more likely than siblings of adults with mental illness to perceive that the brother or sister had a pervasive influence on their life decisions and to evaluate their sibling experience as mostly positive. In addition, siblings of adults with mental retardation had a closer relationship with the brother or sister with the disability than siblings of adults with serious mental illness. Finally, siblings of adults with mental retardation had better psychological well-being when they had a close relationship with the brother or sister. In contrast, siblings of adults with serious mental illness had more favorable psychological well-being when they perceived a less pervasive impact of the brother or sister on their life. Implications for future research and service delivery are discussed. Key Words: caregiving, disability, intergenerational relations, mental illness, mental retardation, siblings. There is increasing public recognition that families are the primary source of support for persons with long-term disabilities such as mental retardation and serious mental illness (Francell, Conn, & Gray, 1988; Hatfield & Lefley, 1987; Lefley, 1996; Seltzer & Krauss, 1989). Although the literature on the circumstances of parents who provide lifelong care to a family member with a disability is growing (Cook & Pickett, 1987; Fisher, Benson, & Tessler, 1990; Heller & Factor, 1991, 1993; Lefley, 1987; Seltzer & Krauss, 1994), much less is known about the consequences for adult siblings in these families. With the realization that parental care will ultimately end when the parents die or become incapacitated, it is critical to gain an understanding of the potential role of siblings as the next generation of caregivers. Research on the adult sibling relationship when neither sibling has a disability has demonstrated the unique position occupied by siblings among the range of family relationships. Adult sibling relationships are longer in duration than any other kinship tie (Cicirelli, 1982), are based on a common family life space (Ross & Dalton, 1981), and are egalitarian (Avioli, 1989). These relationships tend to be characterized by supportiveness, concern, and mutual affection (Cicirelli, 1982), although these patterns are affected by gender (Rosenberg, 1982), social class (Brady & Noberini, 1987), and stage of life (Goetting, 1986). There are few systematic investigations of the nature of the relationships between adult siblings when one sibling has a disability, or of the implications of sibling relationships for future caregiving options (Horwitz, 1993a, 1993b; Krauss, Seltzer, Gordon, & Friedman, 1996; Reinhard & Horwitz, 1995; Riebschleger, 1991; Seltzer, Begun, Seltzer, & Krauss, 1991). The available research literature and personal testimonies reveal extremely complex and multifaceted sibling relationships and experiences, which vary across different stages of the life course, and which are colored to a large extent by the milieu of the family (Griffiths & Unger, 1994; Horwitz, Tessler, Fisher, & Gamache, 1992; Stoneman & Berman, 1993). It is also evident that the quality of the relationship between a sibling and his or her brother or sister with a disability is influenced substantially by the meanings attributed by the family regarding the nature of the disability, the reactions of parents to the challenges of the disability, and overall patterns of family adaptation (Begun, 1989; Johnson, 1988; Swados, 1991; Zetlin, 1986). …