With respect to mean level differences, it was only in regard to the quality of the parent/adult child relationship that the three groups differed, with mothers of adults with Down syndrome reporting better relationships with their son or daughter than the other two groups of caregivers. However, counter to our expectation, there were no mean level differences in optimism, depression, positive psychological well-being, and physical health among the three groups of caregiving mothers. In our prior work, we found mean-level differences between mothers of adults with mental illness and mothers of adults with mental retardation in their degree of role-specific pessimism about their child’s future (e.g., Seltzer et al., 1997
). This pattern was not replicated in the present analysis, which used a measure of dispositional optimism rather than the role-specific approach taken in our prior analyses. In our regression analysis, we did not find that dispositional optimism was predicted by specific stressors (e.g., externalizing and internalizing behaviors) in the caregiving context. Thus, dispositional optimism may be less sensitive to characteristics of the caregiving context than role-specific measures, which could thus explain the lack of group differences in the present analysis. Regarding depressive symptoms, although the differences were not significant, the means were in the direction of our prediction, with mothers of adults with Down syndrome having the lowest level of depressive symptoms and mothers whose adult child had schizophrenia or autism about a point higher.
We also did not find the expected group differences in the psychological well-being of these maternal caregivers. Our measure of psychological well-being consisted of three subscales from Ryff’s (1989)
measure of positive mental health: Personal Growth, Self-Acceptance, and Purpose in Life. There has been increasing recognition that in the course of facing the stressors of caregiving, family members often have unexpected but positive experiences that derive from these nonnormative parenting challenges and that may increase their resilience to future life stressors. For example, in a study of families coping with mental illness, Marsh, Lefley, Evans-Rhodes, Ansell, and Doerzbacher (1996)
found that over 90% of the family members reported that they had personally grown and become closer to family and friends as a consequence of coping with mental illness. Greenberg, Seltzer, and Judge (2000)
, in a study of aging mothers with an adult son or daughter with mental illness, found that many mothers could speak of ways that their life had been positively transformed as a consequence of their struggle with their son or daughter’s illness, for example, causing them to reevaluate their priorities and goals in life and to become more assertive advocates for their son or daughter. Parents of children with developmental disabilities such as Down syndrome or autism report sharing similar perceptions that the challenges of caregiving have led them to develop an inner strength and acceptance that they might not otherwise have developed (Krauss & Seltzer, 2000
). Thus, our finding that all three groups maintained a relatively high level of positive psychological well-being speaks to the capacity of these mothers to find meaning and opportunities for personal growth even in the face of ongoing parenting challenges.
In contrast, we found that the three groups varied with respect to the effects of relationship quality on maternal well-being, and they also varied regarding how optimism figured into this association. Mothers of adults with schizophrenia and autism had better psychological well-being when they had a better quality of relationship with their son or daughter, but the effect of the parent/adult child relationship was not evident among mothers of adults with Down syndrome. And for mothers of adults with autism or schizophrenia, the effect of relationship quality on psychological well-being was mediated totally or partially by optimism. This mediation effect was consistent with our hypotheses and, with respect to psychological well-being, was most prominent in the sample of mothers who had an adult child with autism, while with respect to depressive symptoms, it was most prominent in the sample of mothers who had an adult child with schizophrenia.
Why did optimism have such a strong mediating effect on the association between the quality of the relationship and psychological well-being for mothers of adults with autism? The answer might lie with respect to the place that this cohort fits in the history of diagnosis and treatment for individuals with autism. The average person with autism in this sample was born 35 years ago, in the mid 1960s, an era when the blame for the cause of autism was placed squarely on the shoulders of the mother. Although autism is now recognized to be a neurological disorder with a strong genetic basis, the children in our sample were diagnosed when bad parenting—particularly bad mothering—was the dominant explanation and when no hope was held out for improvement of the symptoms of autism across the life course. In the face of this hostile professional climate, mothers who, over the years, developed positive relationships with their child with autism had reason to feel very optimistic because this positive relationship with their child contradicted all of the incorrect predictions made by professionals about what the future held for their family life (Park, 2001
). Similarly, mothers of adults with schizophrenia were also blamed for their child’s difficulties in past decades, which may account for the mediating effect of optimism we found with respect to maternal depression.
A question raised by our findings is why relationship quality was not predictive of the well-being among mothers of adults with Down syndrome. We had hypothesized that relationship quality would be a significant predictor of well-being in all three groups and expected this to hold particularly among mothers of adults with Down syndrome. Such children have a less prominent profile of behavior problems and psychopathology and a more normative range of social relationships (Dykens, 1998
) than the other two diagnostic groups in our study, which we expected in turn would be a boost to maternal well-being. The median quality of the relationship score for mothers of adults with Down syndrome was 52 out of a maximum of 60 (as compared with a median of 47 for mothers of adults with autism and 45 for mothers of adults with schizophrenia). And, more important, only 2% of the mothers of adults with Down syndrome had quality of relationship scores lower than 40, which would indicate some degree of dissatisfaction with the relationship. Thus, restriction in range of the quality of relationship variable in the subsample of adults with Down syndrome may be one reason why relationship quality had no significant effect in this group.
Our study findings highlight the role of adults with schizophrenia and adults with autism as supports to their mother. For both mothers of adults with schizophrenia and mothers of adults with autism, the quality of their relationship with their adult child was related to higher levels of maternal optimism, increased psychological well-being, and lower levels of depression. Even after we controlled for optimism, the quality of the mother/adult child relationship was predictive of lower levels of depression in mothers of adults with autism and higher levels of psychological well-being in mothers of adults with schizophrenia. All too often the focus of research is on the role of adults with disabilities as a burden to their family, with little recognition of their role as a source of family support. Our findings contribute to the emerging body of research documenting the positive and supportive role played by persons with disabilities within their family (Greenberg, 1995
; Greenberg, Greenley, & Benedict, 1994
; Heller et al., 1997
; Summers, Behr, & Turnbull, 1989
). Additional research is needed to investigate the role of adults with disabilities as supports to their family and the potential influence of this support in enhancing not only the quality of life of family members but, equally important, the quality of life of adults with disabilities.
Our findings add to the growing evidence of the importance of optimism as a psychological resource that is associated with an array of indicators of positive mental and physical health (Chang, 2001
; Peterson & Bossio, 2001
). Our study is among the first to investigate the role of optimism as a resource to aging parents caring for an adult child with disabilities. The consistency and strength of the effect of optimism across these three diverse groups of caregivers and outcomes speaks to the importance of optimism as a resource to parents coping with the stressors of caring for an adult child with disabilities. Historically, optimism has been viewed as a personality trait that is quite stable across time and situations. However, with the growing evidence of the beneficial effects of optimism on physical and mental health, researchers have begun evaluating different interventions aimed at increasing an individual’s optimism. To date, cognitive–behavioral therapy has shown promising results in producing short-term changes in optimism, although further evidence is needed to determine whether these effects persist over time (Pretzer & Walsh, 2001
). Our findings suggest that interventions aimed at enhancing feelings of optimism hold great promise for developing new strategies to working with family caregivers to alleviate or reduce feelings of distress.
Our findings regarding the effects of behavior problems on maternal well-being are complex and may suggest that the effects of different types of behavior problems may depend in part on the nature of the child’s disability. For both mothers of adults with Down syndrome and mothers of adults with schizophrenia, externalizing behaviors were related to higher levels of depression and lower levels of physical health. Since parental caregivers are often the targets of externalizing behaviors (Estroff, Zimmer, Lachicotte, & Benoit, 1994
), it is not surprising that such behaviors would have strong effects on maternal well-being. For mothers of adults with Down syndrome, internalizing behaviors also were related to higher levels of maternal depression. Adults with Down syndrome are at an elevated risk of depressive symptoms (Zigman et al., 1994
), especially in their midlife and older years, which can be a source of distress to their caregiving mothers.
It is unclear why neither externalizing nor internalizing behaviors affected the well-being of mothers of adults with autism. One possibility is that our measure of behavior problems did not capture the range of behaviors that are most distressing to parents of adults with autism. Fortunately, in our study of adults with autism, we also administered the Autism Behavior Checklist (Krug, Arick, & Almond, 1980
), which assesses behavioral symptoms associated with autism. When we reran the regression analysis using the Autism Behavior Checklist instead of the measure of behavior problems, we found the expected relationship: A higher level of behavioral symptoms was predictive of a higher level of depression and lower levels of well-being (data available from us). Thus, our finding of no relationship between behavior problems and well-being of mothers of adults with autism must be interpreted cautiously, as it is likely due to limitations in the use of the ICAP for capturing the range of behavior problems in adults with autism.
There are two limitations to our study that should be noted. First, all the sample members volunteered to participate and were almost exclusively White, and thus generalizations should be made with caution. Second, as with all cross-sectional studies, the temporal ordering of the variables cannot be tested in this analysis. On the basis of a stress process model, the quality of the relationship was hypothesized to contribute to feelings of optimism, which in turn influenced maternal well-being. Other theoretical frameworks may offer an alternative ordering of the variables. One alternative formulation is that dispositional optimism (a “trait”) may exert its influence prior to the quality of the mother/child relationship. According to this formulation, more optimistic individuals have better relationships with others, which, in turn, enhances their well-being. In other words, relationship quality is hypothesized to mediate or intervene between feelings of optimism and well-being. We tested this alternative model but did not find evidence that relationship quality mediated the effects of optimism on well-being. Another formulation suggested in the literature is that optimism buffers or moderates the effect of stress. According to this formulation, being optimistic is a resource that reduces distress under conditions of high levels of stress, in our case high levels of behavior problems. We also tested this model but found little evidence for a buffering effect. Nevertheless, these analyses, as noted above, are limited by the cross-sectional nature of the data. Our ongoing research consists of longitudinal studies, each involving at least three waves of data collection, that will allow us to investigate more rigorously the temporal nature of the pathway between quality of the relationship, optimism, and well-being.
In conclusion, this is one of the first studies to examine the role of optimism in the context of maternal caregiving for an adult child with disabilities. Our findings also highlight the importance of the quality of the mother/adult child relationship in the context of autism and schizophrenia, a social resource that has been virtually ignored in studies of these two populations. Our findings suggest that optimism is a resource that has wide-ranging beneficial effects for these midlife and older mothers who face lifelong caregiving responsibilities. Understanding more fully how individuals sustain a sense of optimism in the face of lifelong caregiving challenges will open the door to new interventions for helping caregivers.