Rachel Pruchno

African American and White Mothers of Adults with Chronic Disabilities: Caregiving Burden and Satisfaction.

African American and White Mothers of Adults With Chronic Disabilities: Caregiving Burden and Satisfaction* Rachel Pruchno, Ph.D.,** Julie Hicks Patrick, and Christopher J. Burant A model is developed and tested that explains the effects of race on the caregiving experience by patterning relationships between race and several causal agents. Data from 741 White and 100 African American women with adult children having chronic disabilities revealed that while the African American and White subsamples differed from one another in terms of age, education, income, living arrangements, physical health, caregiving burden, and caregiving satisfaction, race had no direct or indirect influence on either caregiving burden or caregiving satisfaction. Rather, variables representing the sociocultural, interpersonal, situational, temporal, and personal contexts which relate to race explained the observed variance in both caregiving burden and caregiving satisfaction. Key Words: caregiving, chronic disability, race. Although African American caregivers typically have lower incomes (Hinrichsen & Ramirez, 1992), are less well-educated (Staples, 1981; Young & Kahana, 1995), are in poorer health (Gibson & Jackson, 1987; Markides, 1989; Mui, 1992; Young & Kahana, 1995), are more likely to be widowed at earlier ages (Hinrichsen & Ramirez, 1992; Mui, 1992), and care for more impaired relatives (Mui, 1992; Young & Kahana, 1995) than their White counterparts, studies indicate that they report lower levels of caregiving burden (Hinrichsen & Ramirez, 1992; Lawton, Rajagopal, Brody, & Kleban, 1992; Macera, 1992; Mintzer & Macera, 1992; Mui, 1992; Young & Kahana, 1995), lower levels of grief (Struening et al., 1995), lower levels of depression, anger, and hostility (Haley et al., 1995; Miller, Campbell, Farran, Kaufman, & Davis, 1995) and higher levels of caregiver satisfaction (Lawton et al., 1992). These unexpected, yet consistent trends beg for explanation. The analyses that follow will develop and test a model that explains the effects of race on the caregiving experience by patterning relationships between race and the ecological niche in which caregiving occurs. The contexts that will be explored, based on a model described by Dilworth-Anderson and Anderson (1994) include the sociocultural, interpersonal, situational, temporal, and personal. These relationships will be examined using data from a sample of mothers who have adult children with chronic disabilities. Examination will focus on the mechanisms that link these contextual variables to the caregiving experience. Attempts to explain why African American caregivers generally fare better than their White counterparts, despite experiencing more stressors and having fewer resources, have taken several different approaches. On the one hand, there have been suggestions that studies may be contrasting the most fit African Americans, those people who have survived to old age, with a more heterogeneous group of Whites (Gibson, 1982; Jackson, Chatters, & Neighbors, 1982; Manton, Poss, & Wing, 1979; Markides & Black, 1996; Taylor, 1985). A second, related explanation suggests that African Americans may be more resilient to the psychological effects of caregiving than Whites because they are more likely to have experienced a lifetime of adversity (Neighbors, Jackson, Bowman, & Gurin, 1983; Rodgers-Rose, 1980; Spurlock, 1984; Taylor & Chatters, 1986). In fact, some researchers have suggested that Black caregivers may even derive unique benefits and satisfactions from the caregiving role (Dilworth-Anderson & Anderson, 1994; Lawton et al., 1992). A third approach has begun to examine various cultural traditions that result in the empowerment of African American, but not White caregivers. Among the cultural traditions that have been examined are family role involvement, social support, and participation in church activities (Anderson, 1991; Angel & Tienda, 1982; Chatters, Taylor & Jackson, 1985; Coke, 1992; Dungee-Anderson & Beckett, 1992; McAdoo, 1978; Mitchell & Register, 1984; Mutran, 1985; Segall & Wykle, 1988; Taylor, 1986). …

Aging Women and Their Children with Chronic Disabilities: Perceptions of Sibling Involvement and Effects on Well-Being.

AGING WOMEN AND THEIR CHILDREN WITH CHRONIC DISABILITIES PERCEPTIONS OF SIBLING INVOLVEMENT AND EFFECTS ON WELL-BEING* Rachel A. Pruchno, Julie Hicks Patrick, and Christopher J. Burant** The functional and affective relationships characterizing disabled and nondisabled children were described by 838 aging mothers of children with chronic disabilities. Mothers indicated that their nondisabled offspring provided very little functional assistance to their siblings with chronic disabilities, but that affective relationships between siblings were characterized by strong, close ties. Predictors of the affective relationship between siblings, functional assistance provided by nondisabled siblings to their siblings with disability, and the likelihood that a nondisabled child would be a future caregiver to the child with a disability were examined. Implications for practice are discussed. As parents of children with chronic disabilities age and become increasingly frail, many may not be able to continue to provide the support needed by their children with disabilities. In times of crisis, and out of necessity, it is not uncommon for nondisabled siblings to come to the aid of their aging parents and siblings with chronic disabilities. Yet, relatively little is known about the roles of adults whose siblings have chronic disabilities or the effects that this involvement has on the well-being of their aging mothers. In order to enable professionals in the fields of aging, developmental disabilities, and mental health to understand the role of siblings, this article, based on reports from aging women with children who have chronic disabilities, has three goals. These include an examination of the ways in which nondisabled people are involved in the lives of their siblings who have chronic disabilities, an exploration of the predictors of current and future sibling involvement, and an investigation of the extent to which present and future sibling involvement affect the well-being of aging mothers. The sibling bond occupies a unique position among family relationships. It has the potential to last longer than any other human relationship; it includes people who share a common genetic, cultural, and experiential heritage; and, because it is an ascribed rather than an achieved role, it remains part of an individuals identity regardless of changes in marital status, place of residence, or financial well-being (Cicirelli, 1982; Dunn & Kendrick, 1982). Sibling relationships that include people with chronic disabilities are especially important for two reasons. First, it is generally nondisabled siblings who serve as resources both to their siblings with disabilities and to their aging parents. Second, it is nondisabled siblings who often are identified by their aging parents as the people most likely to assume primary responsibility for their siblings with disabilities when parents are no longer able to fill this role (Griffiths & Unger, 1994). SIBLING RELATIONSHIPS IN THE CONTEXT OF CHRONIC DISABILITIES There is good evidence that many adult siblings of persons with chronic disabilities continue to be emotionally and instrumentally involved with their sibling with a disability throughout the lifespan. In a study of the sibling relationships of adults with mild retardation, Zetlin (1986) identified five kinds of relationships ranging from those in which siblings assumed surrogate parent roles to those in which virtually no contact was maintained and those characterized by acrimony. An earlier study by Cleveland and Miller (1977) of older siblings of institutionalized adults with profound or severe developmental disabilities found that most of the respondents reported adapting positively to having a sibling with a developmental disability. In addition to positive relationships with their siblings with development disabilities, most had good relationships with their other nondisabled siblings, good school experiences, and most reported that their adult life commitments had not been affected by having a sibling with a developmental disability. …

Predictors of patient treatment preferences and spouse substituted judgments: the case of dialysis continuation.

Objectives. To examine the factors predicting preferences for continued hemodialysis treatment among patients with endstage renal disease (ESRD) and to compare these factors to those predicting their spouses’ predictions of patients’ preferences (substituted judgments). Design. Descriptive, crosssectional. Participants. Total of 291 hemodialysis patients, aged 55 years and older, and their spouses. Measurement. Hypothetical scenarios were designed to elicit preferences for dialysis continuation under various health conditions. Other measures included the Philadelphia Geriatric Center Negative Affect Scale, Kidney Disease Symptoms Scale, Brief Multidimensional Measure of Religiousness, single-item global subjective health and quality-of-life measures, 2-item fear of end-of-life suffering measure, and selected demographics. Results. Patients’ preferences and spouses’ judgments were only moderately correlated (r = 0.33). Multiple regression analyses revealed that patients’ preferences to continue dialysis were positively related to education, subjective quality of life, and religious participation and negatively related to months of ESRD treatment and fear of end-of-life suffering (R2 = 0.15). Spouses ’ substituted judgments regarding patients’ dialysis continuation preferences were positively related to African American race and spouses’ perceptions of patients ’ quality of life and negatively related to months of ESRD treatment, spouses’ perception of patients’ negative affect, and spouses’ own fear of end-of-life suffering. Conclusion. Patients and surrogates used different criteria in formulating judgments about continuation of life-sustaining treatment and had different perceptions about the patients’ condition. Furthermore, the substituted judgments of spouses were influenced by their own characteristics. These processes may explain inaccurate substituted judgments.

Patterns of service utilization by adults with a developmental disability: type of service makes a difference.

Patterns and correlates of service utilization by adults with a developmental disability were examined using data from 831 mothers of an adult child with a developmental disability. A modified Andersen model of health services was used to examine service utilization in seven domains. Multinomial logistic regression revealed that predictors of services received as well as predictors of unmet need for services varied by service. Findings emphasize the importance of considering predisposing characteristics, enabling resources, and need as well as service in order to understand patterns of service utilization.

The Family's Role in the Nursing Home

Data were collected from 424 adult children of insti- tutionalized aged in order to assess the role behaviors associated with caregiving for a parent in a nursing home. Congruence was indicated between tasks family members were providing for the parent and tasks family members thought they should be providing. Predictors of non-technical tasks provided by adult children included more frequent visits, being female, and having parents with more illnesses; while predictors of technical tasks included more frequent visits. parents with more illnesses, older parents, and more technical tasks done by staff.

Mothers and Fathers of Adults with Chronic Disabilities Caregiving Appraisals and Well-Being

The stressors, resources, caregiving appraisals, and mental health of aging women and men who have a child with a chronic disability were contrasted. Data from 251 women and their husbands indicated that while mean level differences characterize the reports of mothers and fathers, predictors of caregiving satisfaction, caregiving burden, depression, and life satisfaction were relatively similar. With similar mechanisms linking stressors, resources, appraisals, and outcomes for mothers and fathers, these data provide strong evidence for the application of a common model for understanding the experiences of aging men and women who have a child with a chronic disability.

Mothers of Adults with Developmental Disability: Change over Time.

Predictors of formal service utilization, waiting list use, and caregiving burden were assessed over a 4-year time period for 305 mothers of an adult child. Results indicate that caregiving burden at follow-up is predicted by residential status, burden, child behaviors at baseline, and child placement. Formal service use at follow-up is predicted by formal service use, child behaviors, co-residence at baseline, and child placement. Waiting list use at follow-up is predicted by waiting list use, burden, co-residence at baseline, and child placement. Placement outside the mothers home is predicted by co-residence, mothers functional ability, and waiting list use at baseline. Findings suggest that waiting list use and placement are aspects of an evolving process rather than discrete events.

Interview Modality Effects on Costs and Data Quality in a Sample of Older Women

Objectives:To contrast the costs and quality of data collected in person, by telephone, and by self-administered questionnaires in a sample of older persons. Methods: Data collected via interviews with 586 women are contrasted on four dimensions. Results:The cost of data collection was 25% to 30% lower for the self-administered mode than for other modes. Response rates were highest for the inperson interviewand lowest for the self-administered questionnaire. The rate of missing data was highest for the self-administered questionnaire. Significant differences in response effects were found across mode, with respondants to self-administered questionnaires profiling the poorest. Discussion:The costs and quality of data collected by various modes are discussed in terms of their implications for understanding the physical and mental well-being of older people.

Caring for an institutionalized parent: the role of coping strategies.

This study extends knowledge about the stresses of caregiving by considering relationships between adult children and their institutionalized parents. Although previous studies have indicated that emotional strains experienced by adult children with institutionalized parents are of similar magnitude to those experienced by caregivers in the community, little attention has been paid to effects that may mediate the stressor-mental health relationship. Coping strategies were hypothesized as mediators of the stressor-mental health relationship. Data from 424 adult children with a parent living in a nursing home revealed that emotion-focused coping strategies mediate the relationship between stressors and mental health, whereas problem-focused coping strategies do not mediate this relationship. Findings emphasize the importance of examining coping strategies as multidimensional entities having differential effects on mental health.

Life events and interdependent lives. Implications for research and intervention.

The central thesis of this article is that a single life event has the capacity to affect and change not one but several lives. This thesis is related to theory on attachment, roles, and convoys. The