Julie Hicks Patrick

Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders.

The impact of caring for a child with autism on caregivers’ health-related quality of life (HRQOL) is not fully understood. The objective of this study was to compare the HRQOL scores of caregivers of children with autism to those of the general US population and to identify the factors that influence HRQOL. Caregivers of children with autism had lower HRQOL scores than the general population. Care recipient level of functional impairment, social support, use of maladaptive coping, and burden influenced caregiver mental HRQOL. Care recipient extent of behavioral problems and social support influenced caregiver physical HRQOL. Findings emphasize the use of multi-pronged intervention approach that incorporates components aimed at improving family functioning, increasing support services, and assisting caregivers in developing healthy coping skills.

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. …

Gender, emotional support, and well-being among the rural elderly

The current study sought to clarify the effects of social support on the psychological well-being of rural elders. Data were provided by 180 older men and women (mean age = 73.6 years) living in Northern Appalachia. Similar to the demographic profile of this region, most (97.2%) of the participants were Caucasian. Although mean differences in perceptions of emotional support did not emerge, the relative importance of various sources of support differed for men and women. For men, higher satisfaction with family support was associated with lower negative affect and higher positive affect. For women, although satisfaction with emotional support from family and more years of education were associated with lower levels of negative affect, emotional support from friends enhanced positive affect. The results suggest that new programs may be needed in order to help older rural men and women to maintain well-being in late life.

Neuroticism, coping strategies, and negative well-being among caregivers.

Neuroticism was incorporated into a model for predicting the well-being of family caregivers. Using data from 596 women with an adult child with a chronic disability, the model hypothesizes direct effects of neuroticism on a caregivers perceptions of the stressor, on her wishful-escapism and problem-focused coping, and on psychological well-being. Results indicate that neuroticism exerts direct and indirect effects on negative well-being. Results also indicate that stressors have direct effects on both wishful-escapism coping and problem-focused coping. Burden had direct effects on negative psychological well-being. Diagnosis influences the model by having direct effects on stressors and wishful-escapism coping but not on problem-focused coping or burden. Inclusion of individual level variables, such as neuroticism, results in a substantial amount of explained variance in negative well-being.

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.

Psychometric properties of the Caregiver Strain Questionnaire (CGSQ) among caregivers of children with autism

The purpose of this study was to test the psychometric properties of the Caregiver Strain Questionnaire (CGSQ) among caregivers of children with autism. The CGSQ was originally developed to assess burden experienced by parents of children and adolescents with serious emotional and behavioral disorders. Study data was collected from 304 primary caregivers ofchildren with autism using a cross-sectional survey design. We tested the one-, two-, and three-factor CGSQ model. Though the three-factor CGSQ model fit better than the one- and two-factor model, it was still short of an acceptable fit. Minor modifications were made to the three-factor model by correlating error terms. The modified three-factor CGSQ model with correlated error indicated reasonable fit with the data. The 21-item CGSQ had good convergent validity, as indicated by the correlation of its three subscales with constructs including mental health-related quality of life, maladaptive coping, social support, family functioning, and care recipient level of functional impairment and extent of behavioral problems, respectively. The internal consistency reliability of the instrument was also good, and there were no floor and ceiling effects. The CGSQ was found to be a reliable and valid instrument to assess burden among caregivers of children with autism.

The effects of depressed affect on functional disability among rural older adults.

This study investigates functional disability among some of the nations most vulnerable older adults: rural Medicaid recipients. Data were provided by 221 older adults (mean age = 75.9 years; 82% women) who were receiving community-based long-term care services through Medicaid. Participants self-reported functional ability involving the completion of six basic activities of daily living (BADLs), three cognitive instrumental activities of daily living (IADLS), and four physical IADLs. Self-reports of depressed affect and the number of physical health conditions were also obtained. Path analysis was used to examine all of the associations among age, gender, number of chronic health conditions, depressed affect and functional disability. The tested model was significant [χ2 (DF = 3, n = 221) = 5.052, p = 0.168; TLI = 0.945; CFI = 0.992; RMSEA = 0.056] and explained 45.1% of the variance in BADL disability. Depressed affect significantly predicted disability in cognitive IADLs and physical IADLs, which predicted disability in BADLs. Age and gender had indirect effects on BADL, through their association with cognitive IADLs and physical IADLs. The number of chronic health conditions exerted both indirect and direct effects on BADL disability. Results are discussed within the context of the growing literature that suggests the importance of psychological variables as predictors of functional disability. Moreover, we discuss whether community-based long-term care is appropriate for older adults with high levels of functional disability.

Effects of formal and familial residential plans for adults with mental retardation on their aging mothers.

Data regarding future residential plans were collected from 141 mothers of adult children with mental retardation. Results demonstrate that greater caregiving burden was associated with more extensive planning for residence within the formal service system and less planning for residence with a family member. More frequent service use also predicted greater planning for future residence within the formal system. Planning for residence with a family member and higher functional ability on the part of the child significantly decreased the sense of worry mothers had about the childs future whereas plans for the child to reside within the formal system had no association with worry about the future.

Health-Related Quality of Life and Quality of Life in Type 2 Diabetes

AbstractBackground and objectives: Health-related quality of life (HR-QOL) and quality of life (QOL) are increasingly being examined as outcomes in assessments among patients with type 2 diabetes mellitus. However, there is a lack of standardization in interpreting the two outcomes and insufficient appreciation of the differences between HR-QOL and QOL. This study reports relationships between two instruments of HR-QOL and an instrument of QOL in a cross-sectional study of patients with type 2 diabetes. Methods: Patients with type 2 diabetes at the outpatient clinics of a university hospital completed measures of generic health status (12-item Short-Form Health Survey [SF-12], version 2 and EQ-5D) and diabetes-specific QOL (Audit of Diabetes Dependent Quality of Life [ADDQoL]). Patient-reported data were merged with retrospective clinical data including glycosylated hemoglobin (HbA1c), co-morbidities, diabetes complications score, body mass index (BMI), and others, obtained from electronic medical records. A path model of our hypothesized relationships between the physical and psychological components of HR-QOL, overall HR-QOL, and QOL was tested in addition to examining bivariate correlations between these constructs. The fit of the path model was assessed using multiple indexes of fit, including an overall chi-squared (χ2) test, the Comparative Fit Index (CFI), the Tucker-Lewis Index (TLI), and the Root Mean Square Error Approximation (RMSEA). The differences in the association between clinical, medical history and sociodemographic variables with HR-QOL and QOL were explored employing univariate t-tests and ANOVAs as well as multiple regression models. Results: The usable response rate was 44.3% (n = 385). The mean HbA1c of respondents was 7.2% (±1.4), mean duration of diabetes was 10.2 (±9.1) years, and 62.1% were obese (BMI ≥30kg/m2). About 49% of respondents were taking oral medications only, 31.7% were taking oral medications and insulin, and 9.4% were taking insulin only. Spearman correlations of the EQ-5Dindex were 0.640 with the SF Physical Component Score (PCS)-12, 0.534 with the SF Mental Component Score (MCS)-12, and 0.316 with the ADDQoL (all p<0.001). A path analytic model relating SF-12 scores with EQ-5Dindex and ADDQoL scores exhibited good fit (χ2 = 1.32; p = 0.250; CFI = 0.99; TLI = 0.99; RMSEA = 0.03). Insulin use and diabetes-related complications were significantly associated with poorer scores on all measures. Only ADDQoL scores were significantly better among those with the American Diabetes Association-recommended HbA1c level of <7.0% (p = 0.002). Obesity was significantly associated with impaired SF-12 and EQ-5Dindex scores but not ADDQoL scores, while depressive symptoms were significantly associated with poorer scores on all these measures. The included explanatory variables explained a greater proportion of the variance in HR-QOL (PCS-12, MCS-12, EQ-5Dindex) than in QOL (ADDQoL) scores. Conclusion: The study found that HR-QOL measures showed small correlations with the impact of diabetes on QOL. The fit statistics supported the hypothesized relationships in the path model, and provided empirical evidence that HR-QOL is a subset of QOL. In comparison to HR-QOL, QOL was less explained by the included explanatory variables, suggesting a greater influence on QOL by factors not accounted for in the present study.