Marty Wyngaarden Krauss

Psychological Well-Being and Coping in Mothers of Youths With Autism, Down Syndrome, or Fragile X Syndrome

The psychological well-being of mothers raising a child with a developmental disability varies with the nature of the disability. Most research, however, has been focused on Down syndrome and autism. We added mothers whose adolescent or young adult son or daughter has fragile X syndrome. The sample was comprised of mothers of a child with fragile X syndrome (n = 22), Down syndrome (n = 39), or autism (n = 174). Mothers of individuals with fragile X syndrome displayed lower levels of well-being than those of individuals with Down syndrome, but higher levels than mothers of individuals with autism, although group differences varied somewhat across different dimensions of well-being. The most consistent predictor of maternal outcomes was the adolescent or young adults behavioral symptoms.

DEVELOPMENT OF INFANTS WITH DISABILITIES AND THEIR FAMILIES: IMPLICATIONS FOR THEORY AND SERVICE DELIVERY

This Monograph presents the results of a nonexperimental, longitudinal investigation of developmental change in 190 infants and their families after 1 year of early intervention services. The Early Intervention Collaborative Study (EICS), conducted in association with 29 community-based programs in Massachusetts and New Hampshire, was designed to assess correlates of adaptation in young children with disabilities and their families over time, to inform social policy by analyzing the influences of family ecology and formal services on child and family outcomes, and to generate conceptual models to guide further investigation. The study sample (mean age at entry = 10.6 months) includes 54 children with Down syndrome, 77 with motor impairment, and 59 with developmental delays of uncertain etiology. Data were collected during two home visits (within 6 weeks of program entry and 12 months later) and included formal child assessments, observations of mother-child interaction, maternal interviews, and questionnaires completed independently by both parents as well as monthly service data collected from service providers. Child and family functioning varied considerably. Developmental change in the children (psychomotor abilities, adaptive behavior, spontaneous play, and child-mother interaction skills) was influenced to some extent by gestational age and health characteristics, but the strongest predictor of change was the relative severity of the childs psychomotor impairment at study entry. Families demonstrated generally positive and stable adaptation (in terms of the effect of rearing a child with disabilities on the family, parenting stress, and social support), despite persistent challenges with respect to mother-child interaction and differences in reported stress between mothers and fathers. Documentation of services revealed that early intervention is a complex and multidimensional experience that spans multiple public and private systems. Vulnerable and resilient subgroups within the sample were identified, and different correlates of adaptive change were demonstrated. Results of data analyses suggest new perspectives on the study of early childhood disability. The implications of the findings for developmental theory and social policy are discussed.

Access to Specialty Medical Care for Children With Mental Retardation, Autism, and Other Special Health Care Needs

Access to specialty medical care among children with mental retardation, autism, or other types of special health care needs was examined. Results from a national survey indicate that over a third of the children with autism, over a fifth with mental retardation, and over a fifth with other types of special health care needs had problems obtaining needed care from specialty doctors in the preceding year. The most common problems included getting referrals and finding providers with appropriate training. Children with unstable health conditions, autism, or those whose parent was in poor health were at greater risk for problems. Primary Medicaid coverage and public secondary health coverage were associated with fewer access problems. Implications for health services for children with special health care needs are discussed.

Differences in coping effectiveness and well-being among aging mothers and fathers of adults with mental retardation

In this longitudinal study, we examined stress and coping processes among 133 married mothers (age 59 to 83) and fathers (age 56 to 84) of adults with mental retardation (age 19 to 53). There were no differences between mothers and fathers with respect to their frequency of use of emotion-focused coping, but mothers used significantly more problem-focused coping strategies than did their husbands. For mothers, greater use of problem-focused coping strategies and lower use of emotion-focused coping buffered the impacts of caregiving stress on their psychological well-being. However, for fathers, no buffering effects of coping were detected. The implications of gender differences in coping effects were examined in the context of the impact of lifelong caregiving.

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.

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). …

The Consequences of Caring Effects of Mothering a Child with Special Needs

This article broadens our knowledge about family caregiving across the life course by examining caregiving and employment effects experienced by women with children with special needs, using data from a survey conducted in 1998-1999. Almost one fifth of the mothers provide at least 20 hours a week of home health care to these children. More than half of the mothers in the labor force report an employment effect in the form of reducing their hours, and more than half of the mothers at home full-time report ceasing paid employment due to their children’s needs. Experiencing these effects was most strongly associated with the child’s health characteristics. The caregiving provided by mothers of children with special needs occurs at a formative stage of their lives and may be intense and of long duration. These mothers’ experiences should be included in the current research and theories about family caregiving across the life course.

Mother-Child Relationship Quality Among Adolescents and Adults With Autism

The mother-child relationship in families of 202 adolescents and adults with an autism spectrum disorder living at home and its association with maternal caregiving gains and strains were examined. Findings indicate a wide range of variability in the quality of the mother-child relationship, although most were characterized as positive across multiple measures. Characteristics of the son or daughter with autism (less severe maladaptive behaviors, better health, and less social impairments) and characteristics of the mother (lower levels of pessimism) were predictive of more positive mother-child relationships. In turn, specific aspects of the mother-child relationship (greater positive affect and warmth), along with other child and maternal characteristics, predicted fewer maternal caregiving strains and, to a lesser extent, greater caregiving gains.

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.

Adaptation during early childhood among mothers of children with disabilities.

This study documents the extent to which child-related and parenting stress vary during the early childhood period among mothers of children with developmental disabilities. The degree to which specific aspects of the family environment predict stress levels measured at age 3 years and 5 years, after controlling for child characteristics and family income, is also investigated. The Parenting Stress Index was completed by 79 mothers of children with developmental disabilities at three time points: (1) within 1 month of the childs entry into an early intervention program (T1); (2) within 1 month of the childs third birthday (T3); and (3) within 1 month of the childs fifth birthday (T5). Data on child characteristics and family income as well as measures of the family environment (i.e., negative life events, cohesion, and family support) were gathered at both T1 and T3. Repeated measures analysis of variance was used to assess whether there was significant change in the child-related and parenting stress scores across the three time points. Two sets of hierarchical regression equations were also analyzed. The first examined which child, family, and family environment characteristics assessed at T1 predicted stress at T3. The second identified the predictors of T5 stress based on independent variables measured at T3. Child-related stress increased significantly across the three time points, whereas parenting stress remained fairly stable. By age 5 years, one-third of the mothers had child-related stress scores above the clinical cutoff point. Regression analyses revealed the importance of the family environment in predicting both stress outcomes. The only statistically significant predictor of child-related stress at T3 was family cohesion, whereas parenting stress at T3 was predicted by income, cohesion, and family support. The predictors of both child-related and parenting stress at T5 were the same. Greater family cohesion and fewer negative life events predicted lower stress scores at T5. The significant increase in child-related stress during the early childhood period warrants attention by pediatricians, educators, and other professionals who must evaluate the needs of families of children with disabilities for supportive services. Aspects of the family environment were shown to be critical and consistent determinants of both child-related and parenting stress throughout the early childhood period. This finding suggests that pediatricians, in particular, must assess more than simply the diagnosis or the cognitive impairment of the child with a disability to make informed decisions about the frequency with which they should see particular families and whether referral to other services is necessary.