Aging Fathers of Adult Children With Schizophrenia: The Toll of Caregiving on Their Mental and Physical Health

There is a growing body of research showing that caring for a son or daughter with mental illness has a long-term impact on the caregiver's physical and psychological well-being. However, much of what is known about the burden of caregiving is about the experience of mothers, with much less known about fathers ( 1 ). When fathers' experiences are studied, they are typically compared with mothers' experiences. Not surprisingly, compared with mothers, fathers tend to report less burden ( 2 , 3 ), better physical health ( 4 ), and greater marital satisfaction ( 5 ), a pattern commonly observed in general population studies of gender differences. Thus the observed differences between mothers and fathers who are caregivers of adults with schizophrenia may simply reflect more general gender differences found in the population or might suggest that fathers are better able than mothers to adapt to their caregiving role.

To obtain a more precise estimate of the toll of caregiving on fathers that would not be confounded with gender differences, we compared fathers caring for an adult with schizophrenia to similarly aged fathers whose adult children did not have a disability. Specifically, we asked, how do fathers caring for an adult child with schizophrenia differ in their physical and psychological well-being and their marital satisfaction from age-matched fathers who do not have a child with severe mental illness?

We hypothesized that caregiving fathers would experience poorer physical health and psychological well-being and lower marital satisfaction compared with a population-based sample of fathers who did not have a child with a disability.

Methods

The sample of fathers of adults with schizophrenia was from the first wave (2000–2001) of a longitudinal study of families of adults with schizophrenia. The primary respondents were mothers, aged 55 or older, who provided at least weekly support to a son or daughter with schizophrenia. These mothers were recruited primarily through community support programs, the local media, and the National Alliance on Mental Illness (NAMI) in Wisconsin and its local affiliates. Fathers of these adults with schizophrenia were invited to participate in our study by completing a self-administered questionnaire if they were living with their wives. Of the 162 married mothers, 104 of their husbands agreed to participate, for a response rate of 64%. Two fathers had to be excluded from this analysis because of missing data on key dependent variables. Fathers who declined to participate were younger and more likely to be working. The mean±SD age of the fathers who participated was 70.7±7.4. The age of the adults with schizophrenia was 40.7±7.8, and 32 (31%) lived with their parents.

A comparison sample of fathers was selected from the 2004–2006 wave of the Wisconsin Longitudinal Study (WLS). The WLS is a longitudinal study of a random sample of young men and women who graduated from Wisconsin high schools in 1957 and their randomly selected brothers and sisters. In the 2004–2006 period, 10,128 of the eligible respondents participated in a telephone survey and completed a mailed questionnaire, which represented a response rate of approximately 74%. Of those participating, 3,777 were fathers who were currently married, had typically developing children, and had completed the self-administered questionnaire, which contained the measures used in this analysis. Our comparison group was drawn from these 3,777 WLS fathers by selecting those who most closely matched the sample of fathers of adults with schizophrenia with respect to age, marital and employment status, residence in Wisconsin, and whether they had an adult son or daughter living in the household. Seven fathers of adults with schizophrenia were excluded from the analysis because there were no comparable matches in the WLS data set. Thus the final sample consisted of 95 fathers of adults with schizophrenia and a matched sample of 95 fathers of adult children who did not have any reported disability.

Because families belonging to NAMI generally have more education and higher incomes than the general population, we investigated whether there were significant education or income differences between the two groups of fathers. The two groups of fathers were similar with respect to their education levels, having on average one to three years of college. Also, the difference in income between the two groups was not significant, with fathers of adults with schizophrenia earning $52,337±$31,167 and fathers in the comparison group earning $54,026±$33,687. Informed consent was obtained from all participants, and the study was approved by the Institutional Review Board of the University of Wisconsin-Madison.

The two groups of fathers were compared on measures of depression, psychological well-being, self-rated physical health, somatic health symptoms, and marital satisfaction. Depression was measured by the Center for Epidemiological Studies-Depression Scale (CES-D) ( 6 ). For each of 20 symptoms, the respondent indicated how many days over the past week the symptom was experienced (from 0, not at all, to 3, five to seven days). A total score was calculated by summing responses to the 20 symptoms, with a higher score indicating elevated levels of depression. A score of 16 or above indicates the risk of depression. Cronbach's alpha for the CES-D was .90 in both the schizophrenia study and the WLS.

Psychological well-being was measured by eight items from Ryff's Psychological Well-Being Scale ( 7 ). For each item, respondents indicated their level of agreement (from 1, strongly disagree, to 6, strongly agree). Items were summed for a total score, with higher scores indicating better psychological well-being. Reliability was .80 for both studies.

Perceived health was measured by a single item ( 8 ). In the WLS, respondents were asked to rate their perceived health on a 5-point scale (from 1, excellent, to 5, poor), whereas in the schizophrenia study a 4-point scale was used (from 1, poor, to 4, excellent). The "very good" and "good" categories in the WLS were collapsed and recoded to match the 4-point scale in the schizophrenia study.

The somatic health symptoms scale consisted of a list of 17 common symptoms, such as headaches and chest pain ( 9 ). Respondents indicated whether the symptoms were experienced over the past six months (1, yes; 0, no). The responses were summed, with a higher score reflecting greater somatic health symptoms. Cronbach's alpha for both studies was .79.

Six items from the Marital Satisfaction Questionnaire for Older Persons ( 10 ) were used to assess marital satisfaction. For each item, fathers rated their satisfaction on a 6-point scale (from 1, very dissatisfied, to 6, very satisfied). The score was constructed by summing the responses, with higher scores indicating greater marital satisfaction. Cronbach's alpha was .95 and .91 for the schizophrenia study and the WLS, respectively.

An independent-samples t test was conducted to compare the two groups of fathers. We used SPSS for Windows, Version 16.0, for the analyses.

Results

As hypothesized and shown in Table 1 , when compared with their age-matched peers, fathers of adults with schizophrenia experienced significantly higher levels of depression, poorer psychological well-being, lower levels of perceived health, and less marital satisfaction. Whereas 16 (17%) fathers in the comparison group scored above the cutoff of 16 on the CES-D, 32 (34%) fathers with an adult child with schizophrenia had a score at or above this cutoff point. With respect to perceived health, 29 (31%) fathers in the schizophrenia study rated their health as poor or fair, compared with six (6%) fathers in the comparison group. Although the fathers differed on their perceived health, they did not differ in their reports of somatic health symptoms.

Enlarge table

Discussion

Our findings suggest that prior research may have underestimated the effects of caregiving on fathers because many studies were designed to compare fathers' experience with mothers', and women in the general population report higher levels of distress than men. When compared with peers their age, fathers showed a pervasive pattern of poorer mental health and perceived their health as worse. Thus, if we are to understand the experience of fathers, it is important to compare them with other men of a similar age whose children do not have a disability.

Although the fathers of children with schizophrenia in our study showed several signs of distress, few turned to formal organizations such as NAMI for help or support; only 37 fathers (39%) were members of NAMI. Research indicates that fathers, like their wives, benefit from support group participation, especially when groups have an educational orientation and when their spouses participate ( 11 ). NAMI support groups intended specifically for married couples may be one strategy for encouraging the greater involvement of fathers. Also, public education campaigns, such as Real Men, Real Depression, sponsored by the National Institute of Mental Health, have proved extremely successful in reaching millions of men with depression and encouraging them to seek support and treatment. NAMI has successfully developed an educational campaign to fight stigma. Therefore, public campaigns might be developed to reach out to fathers coping with mental illness in the family.

There were two limitations of this study. First, the sample was drawn from Wisconsin and thus underrepresented the ethnic and racial diversity found in the U.S. population, which reduces the generalizability of the findings. The second limitation arises from the 64% participation rate of fathers. As noted, fathers who declined to participate were younger and more likely to be working. These younger fathers may have had less time than older fathers to actively cope with the ongoing and cumulative stress of their adult child's illness because of their work responsibilities, which may have decreased their motivation to participate in research. We do not know how the nonparticipating fathers differed from participants in terms of their experience of coping with their child's illness. Caregiving might take an even greater long-term toll on younger fathers, because they have the added stress of balancing demands at work with those at home. Alternatively, the work role might offer respite from a stressful home situation and be a source of self-esteem and social support, thus offsetting the stress of caregiving.

Despite these limitations, the study provides evidence of the vulnerability of caregiving fathers and speaks to the need for targeting support to aging fathers, whose role as caregivers to adults with schizophrenia has remained far too long invisible to mental health providers and researchers.

Acknowledgments and disclosures

This study was supported by grant MH559280 (Dr. Greenberg, principal investigator) from the National Institute of Mental Health and by grant AG20558 from the National Institute on Aging.