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Article Contents

Data and methods, discussion and conclusions.

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Caregiver Stress and Mental Health: Impact of Caregiving Relationship and Gender

Decision Editor: Nicholas G. Castle, PhD

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Margaret J. Penning, Zheng Wu, Caregiver Stress and Mental Health: Impact of Caregiving Relationship and Gender, The Gerontologist , Volume 56, Issue 6, 1 December 2016, Pages 1102–1113, https://doi.org/10.1093/geront/gnv038

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This study compared the stress and mental health implications of caregiving to a spouse, children, siblings, other family members, friends, and others among middle-aged and older male and female caregivers.

Multivariate regression analyses were conducted using 2007 Canadian General Social Survey data collected on a subsample of caregivers aged 45 and older.

Our analyses revealed that for women, caring for a spouse or children was more stressful and detrimental to mental health than caring for parents or others. Similarly, for men, caring for a spouse and for children was more stressful than caring for others but did not adversely affect overall mental health.

The findings suggest that spousal and child caregiving tend to be more rather than less stressful and detrimental to middle-aged and older caregivers’ mental health than is caregiving to most others but that gender differences need to be considered.

Family and other informal caregivers provide the vast majority of long-term care to older adults as well as others with chronic illnesses and disabilities ( Ennis, Rosenbloom, Canzian, & Topolovec-Vranic, 2013 ; Viana et al., 2013 ). In Canada, approximately 8.1 million caregivers (28% of the population aged 15 and older and 35% of those aged 45 and older) provided care to a family member or friend with a long-term health condition, a disability, or problems associated with aging during the past 12 months: 48% provided care primarily to a parent or parent-in-law, 8% to a spouse or partner, and 5% to a child. The remainder (39%) provided care to other family members (23%) or friends, colleagues, or neighbors (16%; Sinha, 2013 ; Turcotte, 2013 ; Turner & Findlay, 2012 ). This is comparable to figures reported in other industrial countries including the United States ( National Alliance for Caregiving and AARP, 2009 ).

To date, numerous studies have addressed the impact of caregiving on the health and well-being of caregivers. In general, empirical accounts suggest that caregiving is stressful and therefore, likely to have negative implications for the mental health and well-being of caregivers. However, limited research attention has been directed toward the implications of caregiver–care recipient relationships for an understanding of caregiving outcomes ( Litwin, Stoeckel, & Roll, 2014 ) as well as the role of gender, age, or other social structural factors in influencing these implications. Yet, recent theoretical and empirical developments direct our attention to their combined importance for an understanding of the experience and consequences of caregiving. This study addresses these gaps in knowledge, examining the stress and mental health implications of caregiving for a spouse, children, parents, siblings, other family members, and nonfamily (friends, neighbors, coworkers) among middle-aged and older male and female caregivers.

Notwithstanding the positive aspects of caregiving, including feelings of affection and closeness within these relationships and the sense of personal satisfaction and purpose in life that may be derived from it ( Litwin et al., 2014 ; Turner & Findlay, 2012 ), caregiving tends to be seen as having negative implications for caregivers’ mental health ( Pinquart & Sörensen, 2003 ; Savage & Bailey, 2004 ). To a large extent, however, research in the area tends to focus on care recipients who are older and consequently, on adult child caregivers to older parents. As a result, questions arise as to whether findings regarding the negative implications of caregiving reflect the specific experiences of this group but differ for those in other types of caregiving relationships.

On the one hand, stress process models (e.g., Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995 ) as well as social role theory and associated notions of role strain, role conflict, and role overload (e.g., Stephens, Townsend, Martire, & Druley, 2001 ), have led to suggestions that whereas caregiving in general is stressful, caring for an older parent is particularly stressful and consequently, has a more negative impact on care receivers’ mental health and well-being than is caregiving for an older spouse or other family member or nonmember. It has been noted, for example, that adult child caregivers “view caregiving as extra work (role overload) and experience the burden of role reversal” ( Chappell, Dujela, & Smith, 2014 , p. 463) whereas spouses usually do not face conflicts between the caregiver role and other family and work-related roles ( Lin, Fee, & Wu, 2012 ; Pinquart & Sörensen, 2007 ). As well, it has been argued that caregiving for a spouse is considered part of one’s marriage vows and thus, more normative (expected and thus accepted) than caregiving for other frail persons ( Chappell et al., 2014 ; Lin et al., 2012 ).

However, recent theorizing grounded in notions of ambivalence suggests a more complex and differentiated scenario. As a concept, ambivalence tends to be used to refer to the simultaneous evaluation of relationships as both positive and negative ( Willson, Shuey, & Elder, 2003 ). Whereas psychological ambivalence tends to be seen in terms of contradictory feeling states or emotions of individuals, sociological ambivalence draws attention to its sources, specifically the “pressures imposed by contradictory demands or norms placed on an individual in a particular social location, role, or relationship” ( Willson et al., 2003 , p. 1056). For example, Connidis and McMullin (2002a , 2002b ) suggest that caregivers experience ambivalence when they must contend with “structurally created contradictions” in their interpersonal relationships, including those with other family members. These include contradictions between their attempts to exercise agency (so as to meet their own individual needs) and normative obligations requiring them to provide care to family members. Gender and other (e.g., age, class, race, and ethnic) relations are seen as being socially structured in ways that are evident in familial relationships. Thus, the family represents an institution through which gender and other inequalities are played out and as a result, reinforced. They determine the options that various people will have with respect to caring work (e.g., options regarding whether, how, and when to engage in caring work). For example, since women tend to “have fewer options for resisting the pressure to provide care than do men” they are “more likely to experience the ambivalence that results from pressure to provide care and limited individual agency to resist this pressure” ( Connidis & McMullin, 2002a , p. 563).

Ambivalence, in turn, is seen as having implications for the quality of the relationships as well as for how caring work and other issues are responded to. By implication, structural ambivalence is a negative or uncomfortable experience and an issue to be resolved. Accordingly, Lüscher and Pillemer (1998) see psychological or individual ambivalence as referring to “the feelings or sentiments experienced by individuals when faced with structural ambivalence” ( Bengtson, Giarrusso, Mabry, & Silverstein, 2002 , p. 569). Empirical evidence supports this link, indicating that those who report greater ambivalence also show poorer psychological well-being (e.g., Fingerman, Pitzer, Lefkowitz, Birditt, & Mroczek, 2008 ).

To date, however, empirical evidence regarding the implications of different types of caregiving relationship for perceptions of ambivalence or its implications is lacking. Comparative research investigating the implications of caregiver–care recipient relationships for psychological well-being tends to be limited to specific subgroups and the results inconsistent ( Litwin et al., 2014 ). A number of studies report finding that adult child caregivers experience significantly greater burden than other family caregivers ( Andren & Elmstahl, 2007 ; Chappell et al., 2014 ) whereas spouses experience less burden than others (e.g., Bookwala & Schultz, 2000 ). In direct contrast, however, others report that spouses experience more burden than adult child caregivers (e.g., Hong & Kim, 2008 ; Ott, Sanders, & Kelber, 2007 ) or nonspousal caregivers generally ( Kim, Chang, Rose, & Kim, 2012 ; Mohamed, Rosenbeck, Lyketsos, & Schneider, 2010 ). Recently, based on data from adults residing in 19 countries, Viana and colleagues (2013) found greater burden being reported for care of parents, spouses, and children than siblings whereas Shahly et al. (2013) , focusing on caregivers aged 50 and older, reported finding greater burden reported for the care of spouses and children than parents or siblings.

Findings from studies of psychological well-being indicators other than burden frequently indicate that spouses are worse off than adult children. Pinquart and Sörensen’s (2011) meta-analysis of studies comparing caregiving spouses, adult children, and children-in-law, led them to conclude that “spouse caregivers report more depression symptoms … and lower levels of psychological well-being” (p. 1) Based on such findings, Litwin and colleagues (2014) conclude that “long-term spousal care …presents the greatest challenge to caregiver mental health among the respective relationship types” (p. 230).

Less is known regarding how middle-aged and older spousal and adult child caregivers compare to parental caregivers of children with long-term illnesses or disabilities. Poor psychological well-being has also been documented among middle-aged and older parent caregivers of children with mental health or developmental problems ( Ha, Hong, Seltzer, & Greenberg, 2008 ). For example, Litwin and colleagues (2014 , p. 230) found that along with spousal caregivers, coresident caregivers of adult children experienced more depressive symptoms than those who gave care to parents or others. Similarly, Ennis and colleagues’ (2013) systematic review found high levels of caregiver distress regardless of caregiver type (parent vs. spouse) among caregivers of adults with traumatic brain injury. In contrast, however, Robison, Fortinsky, Kleppinger, Shugrue, and Porter (2009) found no impact of caregiver/care receiver relationship on psychosocial outcomes. However, in their study, relationship was measured based on generation of the care receiver (i.e., whether care receivers were in an older generation, the same generation, or a younger generation relative to the caregiver).

Even less is known regarding how middle-aged and older spousal, parental and adult child caregivers compare to caregivers of siblings, friends, or other more distal care recipients. Chen and Lukens (2011) compared parent and sibling caregiving for a family member with severe and persistent mental illness and found sibling status was associated with greater emotional well-being but had no impact on burden or depressive symptoms. Finally, Marks, Lambert, and Choi’s (2002) study of transitions into caregiving among primary kin (i.e., child, spouse, parent), parent-in-law, other kin and nonkin among adults of all ages, found evidence of negative implications for psychological well-being (depression, happiness) but primarily among caregivers of primary kin: “providing care to a parent-in-law was not associated with negative effects for women or men…. The caregiving relationship type with the lowest level of normative obligation (and therefore, we would expect, the greatest degree of voluntary effort), the care of a nonkin associate, was the … type associated with the most beneficial effects…” (p. 665).

The Present Study

The preceding review suggests a need to focus attention on the implications of the caregiver’s relationship to the care recipient and gender for understanding of the caregiving experience, including the mental health and well-being of caregivers. Despite extensive attention to the implications of caregiving for caregiver mental health and well-being, little is known regarding the impact of the relationship of the caregiver to care receiver. Where studied, the focus tends to be on older adults as recipients of care, most often provided by adult children. Consequently, the implications of parental caregiving compared with those associated with caregiving to a spouse/partner, to children, or to others, remain unclear. Furthermore, although gender differences in caregiving outcomes are well-documented, little is known regarding whether and how the implications of the caregiver to care recipient relationship differ by gender. Thus, although research tends to report finding that female caregivers report more burden as well as greater stress and depression than do male caregivers ( Kim et al., 2012 ; Li, Mak, & Loke, 2013 ; Litwin et al., 2014 ), the implications of intersections involving gender and relationship status are less clear.

To address these gaps, this study drew on national survey data to examine the stress and overall mental health implications of spousal caregiving compared with those associated with providing care for children, parents, siblings, other family members, and nonfamily (friends, neighbors, coworkers). Two research questions were examined: (a) What impact does the relationship of the caregiver to the care receiver have on stress and mental health outcomes of caregivers? (b) Secondly, does this impact vary depending on caregivers’ gender? The analyses controlled for characteristics of the caregiver (age, marital status, living arrangements, education, employment, income, and health status) and care recipient (age, nature of problem requiring assistance, contact with caregiver, and length of care receipt) that have been previously shown to influence stress and mental health among caregivers ( Pinquart & Sörensen, 2006 , 2011 ).

Data for the analyses came from the 2007 Canadian General Social Survey, Cycle 21 (GSS-21), conducted by Statistics Canada. The GSS program is an annual national survey that gathers individual- and household-level data to monitor changes in social conditions and the well-being of Canadians ( Statistics Canada, 2009 ). In addition to collecting basic demographic and socioeconomic data, each GSS cycle has a specific thematic focus, such as family, time-use or victimization. The thematic focus of the GSS-21 was aging and social support. It collected detailed information on social support, family history, retirement planning and experience, informal care, and health.

The GSS-21 target population included Canadians aged 45 and older living in all 10 provinces, excluding Canadians living in the northern territories (remote areas) and full-time residents of institutions. The survey was conducted through telephone interviews. As such, households without telephones were excluded, representing 0.9% of the target population ( Statistics Canada, 2009 ). Households with cellular phone service only (6.4% of Canadian households) were also excluded. Although exclusion of cellular phone only households is a limitation, it is unlikely to significantly bias our regression estimates insofar as cellular phone only households are primarily young adult households ( Blumberg & Luke, 2008 ). In 2008, less than 2% of Canadian adults aged 55 and older relied exclusively on cell phones ( Statistics Canada, 2014 ). As well, our data were weighted to represent the entire target population (including cellular phone only households) in the analyses.

The GSS-21 includes a nationally representative sample of 23,404 Canadians aged 45 and older, with an overall response rate of 57.7%. To study caregiving and health, our study population is limited to caregivers. The GSS-21 identified caregivers by the question, “During the past 12 months, did you provide any assistance to an individual because of a long-term health condition or physical limitation? Exclude paid assistance to clients or patients.” For those who answered affirmatively, more information was collected about the primary care recipient—the person to whom the respondent had dedicated the most time and resources (due to a long-term health condition or physical limitation, excluding paid assistance to clients or patients)—and various activities the respondent engaged in to help the primary care recipient. Our study sample included all respondents who had provided such assistance in the past 12 months ( n = 6,140). Cases with missing data for the dependent variables and the primary independent variables were minimal ( n = 34) and thus were removed from the analyses. With the exception of household income, missing data for the control variables were generally insignificant (less than one-half percent) and were imputed using multiple imputation techniques ( Rubin, 1987 ). For household income, missing data were nontrivial (18.4%). Thus, a dummy variable for missing household income was added to all regression models.

The study considered two dependent variables tapping the psychological well-being of the caregivers. We measured self-rated stress on a 5-point Likert scale, using responses from the question: “Thinking of the amount of stress in your life, would you say that most days are: (a) not at all stressful, (b) not very stressful, (c) a bit stressful, (d) quite a bit stressful, or (e) extremely stressful?” ( Lim, Williams, & Hagen, 2005 ; Littman, White, Satia, Bowen, & Kristal, 2006 ). Similarly, self-rated mental health was also measured on a 5-point scale, using the question: “In general would say your mental health is: (a) poor, (b) fair, (c) good, (d) very good, or (e) excellent?” ( Mawani & Gilmour, 2010 ).

Our main independent variable was the respondent’s relationship to the primary care recipient. As noted, all caregivers were asked to identify a primary care recipient (the person to whom the respondent had dedicated the most time and resources during the past 12 months) and information was collected about their relationship to the recipient. We measured this relationship as a six-level categorical variable: (a) respondent’s own child; (b) respondent’s own parent; (c) respondent’s sibling; (d) other family such as a grandchild, a grandparent, an in-law, a relative, or an ex-partner/spouse; (e) a friend, a neighbors, a coworker or someone else; and (f) respondent’s spouse or partner (the reference group).

Various characteristics of the caregiving network, the caregiver, the care recipient, and care activities were also controlled for in the analyses. We included two variables to measure the caregiving network: whether the respondent was the primary caregiver (1 = yes , 0 = no ), and the size of the caregiving network (i.e., the number of other people providing informal care to the care recipient). Caregiver characteristics included their age (measured in years), current marital status [measured in five mutually exclusive categories: (a) cohabiting, (b) widowed, (c) separated/divorced, (d) never married, and (e) married (the reference group)], coresidence (1 = living alone , 0 = otherwise ), education (ranging from 1 = elementary school education or less to 10 = some post-graduate education or more ), employment status [a three-level categorical variable: (a) currently working at a paid job/business, (b) other employment situations (e.g., working inside the home, looking for work), and c) retired (the reference group)], household income (a five-level categorical variable), and health status (assessed using two indicators: activity limitations—a dummy variable, indicating whether the respondent reported any amount/kind of limitation in regular activity at home, work, or in other activities due to a physical or mental condition, or health problem—and the presence of chronic conditions—a dummy variable, indicating the presence of any chronic condition—e.g., arthritis or rheumatism, back problems, diabetes, Alzheimer’s disease, heart disease, or cancer). Two variables reflected care recipient characteristics: age (in years) and the nature of the problem(s) that required assistance [a categorical variable with four categories: (a) mental, (b) both physical and mental, (c) something else, and (d) physical (the reference group)]. Finally, we included two measures of care activities: frequency of visiting/seeing the recipient [an ordinal variable: (a) less than once a month, (b) at least once a month, (c) at least once a week, and (d) daily (the reference group)] and length of time spent providing care (in years).

Statistical Models

We used ordinary least squares (OLS) models for the regression analyses. Since both dependent variables were ordinal variables, we experimented with ordered logit models ( Long, 1997 ). Comparing the two sets of the results, however, we found no substantive differences in either the nature or the magnitude of the parameter estimates. For ease of interpretation, we therefore report the OLS results in this article. In addition, we carefully assessed key model assumptions (e.g., multicollinearity, outliers) and did not detect any serious violations (results of the sensitivity analyses available upon request). Where models were run separately for male and female caregivers, we also tested for the significance of differences in the regression coefficients (unstandardized) associated with the relationship to the care recipient (results not reported but available upon request).

Overall, 26.2% of those in the overall sample reported that they provided care for someone with a long-term health condition or physical limitation during the past 12 months. Most (56.7% of the target population) of those who reported having provided such care were women. Among female as well as male caregivers, the most frequently reported primary care recipient was a parent (35.1%; Table 1 ). Over one-quarter (26.2%) provided care to nonfamily members (such as friends, neighbors, or coworkers). The next most frequent category of primary care recipients included other family members (e.g., grandchildren, grandparents, in-laws—16.8%), followed by spouses (10.3%), siblings (5.8%), and children (5.7%). Female caregivers were somewhat more likely than male caregivers to report caring for children, parents, and siblings whereas male caregivers were somewhat more likely to report other family and nonfamily members as primary care recipients. However, when it came to spousal support, the gender gap was considerably reduced.

Descriptive Statistics of the Variables Used in the Regression Models: Canadians (Age 45+), 2007

Note : Weighted means or percentages, unweighted N .

a Significance tests of differences between women and men.

Source : The 2007 Canadian General Social Survey.

Overall, about one-fifth of caregivers in the target population (21.9%) were primary caregivers, including 26.3% of women and 16.2% of men ( p < .001). The average number of other people providing informal care to the care recipient was 3.3 and did not differ by gender. With regard to demographic and other characteristics, the average age of caregivers was 58.1 years, with no significant difference evident between women and men. This appears somewhat higher than that of the overall caregiver population, reflecting our focus only on caregivers who were aged 45 and older (cf. Sinha, 2013 ). Over two-thirds of the caregivers (67.8%) were married. Male caregivers were more likely than female caregivers to be married or cohabiting, whereas female caregivers were more likely than male caregivers to be either uncoupled (widowed, separated/divorced) or never married. As a result, female caregivers were also more likely to be living alone. Overall, there was no significant gender gap in education. Most caregivers (58.0%) were employed outside the home, with male caregivers significantly more likely to be employed outside the home and to have higher household incomes than female caregivers. Over 40% of caregivers reported experiencing activity limitations and over 50% reported having at least one chronic illness. Although we found no significant gender difference in activity limitations, female caregivers reported a higher rate of chronic illness than male caregivers.

The mean age of the care recipients was 71.5 years, with little difference evident depending on caregiver gender. Physical health problems were the most common problems encountered by the care recipients, followed by both physical and mental health problems, and mental health problems only. Male caregivers were somewhat more likely than female caregivers to report providing care to individuals with physical health problems; female caregivers were more likely to report caring for individuals with mental or both physical and mental health problems. Table 1 also shows that nearly 80% of female and 75% of male caregivers visited or saw the care recipient at least once a week. Many (31% of women and 27% of men) visited/saw the recipient on a daily basis. The average length of care provision was close to 6 years and did not differ by gender.

Table 1 also shows that although the mean level of self-rated stress was somewhat higher among female than male caregivers, no significant difference was evident in terms of self-rated mental health. A comparison of mean levels of stress and mental health by both gender and relationship of the caregiver to the care receiver ( Figure 1 ), indicates that women reported higher levels of stress than men across all caregiving relationships. In addition, stress was highest among those caring for a spouse followed by children and parents. With regard to self-rated mental health, in contrast, the findings suggest considerable disparity associated with both gender and relationship to the care recipient: whereas male caregivers reported better mental health than female caregivers when comparing caregivers to a spouse, children, parents, and other family members, female caregivers reported better mental health among those caring for siblings and nonfamily members.

Mean level of self-rated stress and mental health by gender and relationship to care receiver. (A) Self-rated stress. (B) Self-rated mental health. Source: The 2007 Canadian General Social Survey.

Table 2 presents regression estimates (unstandardized) obtained for models in which self-rated stress was regressed on caregiver relationship to the care receiver, by caregiver gender. The findings reveal that for both female and male caregivers, both before and after the introduction of control variables, caring for siblings, for other family members (i.e., other than spouse, children, parents, or siblings), and for nonfamily members were associated with less stress than was caring for one’s spouse (the reference category). No differences were evident when comparing self-rated stress levels among caregivers to children and to a spouse. However, although no differences were initially evident when comparing stress levels reported by those caring for a parent versus those caring for a spouse, the introduction of controls revealed a significant negative relationship between caring for parents and self-rated stress: parental caregivers reported experiencing lower stress compared with those in the reference category (spousal caregivers). This was the case for both male and female caregivers, with no significant difference evident between the regression estimates obtained with regard to parental caregiving when influencing self-rated stress (results not reported).

Ordinary Least Squares Regression of Self-Rated Stress on Relationship to Care Receiver and Selected Characteristics: Canadians (Age 45+), 2007

Note : All models include a dummy variable for missing household income.

*** p < 0.001; ** p < 0.01; * p < 0.05 (two-tailed test).

Turning to the control variables, we found that among both female and male caregivers, higher levels of self-rated stress were reported by primary caregivers, those who were younger, employed, or engaged in other work-related activities (e.g., working inside the home, looking for work) rather than retired, and caregivers reporting activity limitations and chronic illness. Among female caregivers specifically, greater stress was also reported by those who were separated/divorced or never married (vs. married), those who did not live alone, those with moderate rather than high levels of household income, those providing care to meet mental health or both mental and physical health rather than physical health needs alone, and those who saw the care receiver daily rather than weekly or less often. Among male caregivers, those who had never married reported less stress than those who had married, low household incomes were associated with greater stress whereas moderate incomes were associated with reduced stress relative to those in the highest income group. Finally, those who provided care for longer period of time also reported greater stress.

Table 3 presents models in which self-rated mental health was regressed on relationship to the care receiver. Here, the findings revealed that among women, compared with those caring for a spouse, those caring for parents, siblings, other family members, or nonfamily members reported significantly better mental health. However, no differences were evident when comparing the mental health of caregivers to a spouse to that of caregivers to children. This was evident in both models. The findings differed considerably among men. Although caregivers to parents and to other family members also reported significantly better mental health than spousal caregivers prior to the introduction of control variables, these relationships were no longer significant following the introduction of control variables. Instead, in Model 2, no significant differences were found when comparing the self-rated mental health of spousal caregivers to those caring for those in other familial or nonfamilial relationships.

Ordinary Least Squares Regression of Self-Rated Mental Health on Relationship to Care Receiver and Selected Characteristics: Canadians (Age 45+), 2007

With regard to the control variables, we found that among both female and male caregivers, higher levels of mental health were evident among those who had higher levels of education, those who were employed or retired rather than engaged in other work-related activities (e.g., working inside the home, looking for work), those with moderate or higher levels of household income, caregivers reporting no personal activity limitations or chronic illness, and caregivers not providing care to individuals with both physical and mental health needs. Among female caregivers, better mental health was also reported by those who were older. Among male caregivers, never married individuals reported poorer mental health whereas those providing care for older adults had better mental health. Those who saw their care recipients at least once a week also reported better mental health than those in the reference category (i.e., daily contact).

This article set out to examine the overall stress and mental health implications of the relationship of the caregiver to care receiver. Several findings appear notable. First, in general, the mean levels of self-rated stress reported by the middle-aged and older caregivers in our study were moderate while overall self-rated mental health was fairly high. Thus, notwithstanding the greater stress and poorer mental health that caregivers tend to report when compared with noncaregivers, it should be noted that based on our findings, their overall mental health appears to be fairly good.

Secondly, as suggested by previous literature, stress levels were somewhat greater among female than male caregivers. However, in contrast with frequently reported findings (including those based on the same measure as used here—e.g., Mawani & Gilmour, 2010 ) suggesting that women also tend to report poorer mental health than men, the female and male caregivers in our study appeared to have similar levels of self-rated mental health. The reason for this difference in findings is not immediately clear. Perhaps it reflects the age of the caregiving cohorts included in the present study. It has been noted for example, that age may attenuate the negative mental health implications of caregiving ( Ha et al., 2008 ). Furthermore, findings pointing to a lack of gender differences in middle-aged or older parental caregivers’ psychological well-being when caring for children with mental health or developmental disabilities introduce the possibility that age and type of caregiving may interact to reduce gender differences in the implications of caregiving. Finally, findings indicating that gender differences in psychological health are often small in magnitude (particularly when it comes to measures of subjective well-being rather than burden or depression— Pinquart and Sörensen, 2006 ) suggest that it may have something to do with the specific mental health or well-being dimensions assessed and/or measures used. Self-perceived mental health differences may well be absent among caregivers in middle and later life, despite differences in related factors such as perceived stress, burden, or depression. Overall, these findings point to the need for research that addresses the joint implications of age, gender, and type of caregiving across different dimensions and using different measures of mental health. In the interim, however, they also point to a need for caution when it comes to assumptions regarding the generalizability of results obtained using different concepts and measures.

Third, whereas our bivariate analyses revealed that caring for primary kin (i.e., spouse, parents, and children) was associated with greater self-reported stress than was caring for other family members or nonfamily others (such as friends, neighbors, or coworkers), multivariate regression models revealed that for both female and male caregivers, caring for a spouse and caring for children were associated with greater self-reported stress than was caring for parents, siblings, other family members, or others. For female caregivers only, caring for a spouse or children was also associated with poorer mental health. These findings support conclusions regarding the comparatively problematic nature of spousal caregiving ( Litwin et al., 2014 ; Pinquart & Sörensen, 2011 ) and suggest that this applies to parental caregiving as well. This is consistent with findings recently reported by Litwin and colleagues (2014) and also, with inferences drawn from theoretical accounts of structural ambivalence suggesting that primary kinship ties are the most likely to generate ambivalence (and thus, its mental health implications) due to the greater obligation to provide care and, given the nature of the relationship, the fewest options to resist this pressure ( Fingerman, Hay, & Birditt, 2004 ).

The finding that the adverse implications of caring for a spouse and children were most consistently evident among middle-aged and older women also appears consistent with inferences derived from arguments that within kin relationships, gender and other factors (e.g., age) are also likely to influence caregiving obligations, the ability to resist, and therefore, their implications for stress and mental health. That is, insofar as such women are more likely to confront structural ambivalence due to greater pressure to provide care and more limited ability to resist ( Connidis & McMullin, 2002a ), they are the most likely to experience the negative psychological implications that result. These findings, as well as those discussed above, provide preliminary evidence that supports further research into the nature and implications of structural ambivalence for caregiving relationships other than those involving middle-aged children and their older parents, as is currently the case. Specifically, there appears a need for research to directly assess relationships between type of caregiving relationship, perceptions of ambivalence, and their impact on stress and mental health.

A major strength of our analyses was the inclusion of multiple caregiving relationships. However, a number of limitations should also be noted. For example, although findings indicating poorer mental health among spousal caregivers and caregivers of children than caregivers of parents or others is consistent with previous research ( Pinquart & Sörensen, 2011 ), lack of data on caregiver–care receiver coresidence prevented assessment of the extent to which this might reflect differences in residential propinquity ( Siegler, Brummett, Williams, Haney, & Dilworth-Anderson, 2010 ). On the other hand, the fact that we did include caregiver living arrangements (lived alone vs. not alone) as a covariate suggests this is unlikely. In addition, we were unable to consider some potentially important but small or complex kinship profiles (e.g., differences between children and children-in-law as caregivers, variation by number of children or siblings) or complex caregiving profiles (e.g., caring for more than one person). Our analyses were also restricted to using two single-item indicators to assess stress and mental health. A broader selection of indicators, including multiple-item measures focusing on burden as well as other aspects of mental health (both self-assessed and behavioral), could further strengthen the analyses and also allow for further consideration of linkages among the various components. Finally, although we constructed our analyses and interpreted our results in accordance with recent theorizing on structural ambivalence, we did not assess perceived ambivalence directly.

These and other limitations call for further research to be conducted. However, notwithstanding such limitations, the findings reported here are notable in arguing for the differential implications of caregiving for the mental health of spouses, parents, children, and other caregivers. Increasing pressure on family members to meet the long-term care needs of other family members is extremely attractive to governmental and other authorities seeking to limit or reduce the economic resources allocated to health care. However, it is important to factor in the costs of these decisions for informal caregivers, including costs to stress levels and overall mental health. Such impacts may significantly undermine the health, functioning, and quality of life of caregivers and consequently, might also lead to costly increases in hospitalization and institutionalization for care recipients ( Viana et al., 2013 ). In addition, evidence of structural inequities in the implications of care provision point to the need to pursue a more equitable sharing and for enhancing the resources available to facilitate this role.

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Family caregiver burden in mental illnesses: The case of affective disorders and schizophrenia - a qualitative exploratory study

Affiliations.

• 1 a Institute for Rehabilitation Sciences , Faculty of Arts and Humanities IV, Humboldt University of Berlin , Berlin , Germany.
• 2 b Institute for Rehabilitation Sciences , Faculty of Arts and Humanities IV, Humboldt University of Berlin , Berlin , Germany.
• 3 c Department of Rehabilitation Administration , Faculty of Rehabilitation Sciences, Iran University of Medical Sciences , Tehran , Iran.
• 4 d Faculty of Medicine, Kerman University of Medical Sciences , Kerman , Iran.
• PMID: 26524243
• DOI: 10.3109/08039488.2015.1084372

Background: Caregivers of people with mental illnesses often experience a wide range of burdens. Although many studies have confirmed burdens among family caregivers of mentally ill relatives in general, specific knowledge regarding the concrete everyday hassle and existential sorrows from the caregiverś subjective reasoning perspective is lacking. Furthermore, there is little evidence on the possible different effects of affective disorders and schizophrenia on the quality of burden; this is also true with regard to the role of cultural traditions and lay beliefs.

Aims: The aim of this study was to explore the specific burdens experienced by caregivers of patients with schizophrenia and affective disorders.

Methods: A qualitative study was conducted by semi-structured interviews with 45 caregivers of patients with schizophrenia and affective disorders. Data were analysed by qualitative content analysis.

Results: Eleven encumbering themes resulted from the interviews including incertitude, unawareness, emotional burden, stigma and blame, financial burden, physical burden, restriction in routine, disruption in routine, dissatisfaction with family, relatives, and acquaintances, troubles with patients' adherence to medication, and problems with health services and governmental support.

Conclusions: Caring for a person with mental illness affects caregivers emotionally, financially, physically, and it elicits some restrictions in their routine (daily hassles). Finally, it causes conflicts in family relationships. Despite some differences regarding perceived burden among caregivers of schizophrenia and affective disorders, a common pattern of burden could be identified. Thus, authorities should provide adequate financial, educational, and psychosocial supports for caregivers of mental illnesses.

Keywords: Affective disorders; Iran; burden; content analysis; family caregivers; schizophrenia..

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• Published: 07 August 2024

Care preparedness of family caregivers of maintenance hemodialysis patients: a cross-sectional study

• Guoqing Wang 1 ,
• Xiang Yi 2 &
• Hui Fan 3  

Scientific Reports volume  14 , Article number:  18369 ( 2024 ) Cite this article

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• Haemodialysis

With the increasing number of maintenance hemodialysis (MHD) patients, growing attention has been paid to the quality of care. Strengthening care preparedness of family caregivers is essential to improving the nursing quality. The purpose of this study is to explore the care preparedness level of family caregivers of MHD patients and its influencing factors, so as to provide guidance for the development of targeted care interventions. A total of 237 family caregivers of MHD patients were recruited from the hemodialysis room of two tertiary hospitals in Wuhan using the Convenience sampling method. They were surveyed by the general data questionnaire, Care Preparedness Scale and Positive Aspects of Caregiving. Statistical analysis was conducted using IBM SPSS software, version 21.0. The statistical tests conducted in this study were two-tailed, and a significance level of P  < 0.05 was deemed as statistically significant. The care preparedness and positive aspects of caregiving scores of family caregivers of MHD patients were 19.05 ± 5.64 and 31.28 ± 7.28 points, respectively. The care preparedness level of family caregivers was significantly positively correlated with positive aspects of caregiving ( P  < 0.01). The results of multiple linear regression analysis showed that the total nursing time and whether family caregivers had chronic diseases and positive aspects of caregiving were the main factors influencing their care preparedness (all P  < 0.05). These three factors accounted for 49.6% of the variance. The care preparedness of family caregivers of MHD patients remains to be continuously improved. Medical staff should emphasize the important role of total nursing time, whether the caregiver has a chronic disease, and positive aspects of caregiving in improving care preparedness in this population. To achieve this end, medical staff can provide targeted support and guidance for caregivers according to the influencing factors, such as implementing group psychological education, strengthening the training, offering social support, remote intervention (including family caregivers’ education through the media), and so on. Meanwhile, caregivers should be evaluated dynamically, and information and emotional support should be provided for them.

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Examinations of effects of socio-demographic features and disease-related data of patients with hemodialysis on the quality of life

Validity and reliability of the Korean caregiver contribution to self-care chronic illness inventory

Prevalence and factors associated with the correlation between malnutrition and pain in hemodialysis patients, introduction.

Chronic kidney disease (CKD) has become a serious public health problem worldwide 1 , 2 . The annual incidence rate of end-stage renal disease (ESRD) in China is 2%, which far exceeds the population growth rate (1.1%) 3 . Maintenance Hemodialysis (MHD) remains the preferred kidney replacement therapy solution for patients with ESRD, having extensive applications in clinical practice. MHD patients have the characteristics of a long disease cycle, frequent and regular dialysis and multiple dialysis complications. It is reported that currently near 850,809 patients receive MHD in China 4 .The nursing of such a large group of MHD patients has been the focus and hot topic in almost all domains of the society.

Family caregivers are usually defined as family members who are relatives to patients and undertake the main care tasks. They not only need to fulfil the requirements of patients in daily life and medical rehabilitation, but also provide psychological and emotional support for them 5 . This puts an enormous strain on the caregiver in the financial and social aspects, and also exerts serious adverse effects on their physical and mental health and quality of life. Even worse, the caregiver may become a potential patient 6 , 7 .

Archbold et al. 8 proposed the concept of care preparedness in 1990 and defined it as meeting physical and psychological needs of care recipients, providing them with care and responding to emergencies when performing caring tasks. Research on care preparedness started early in foreign countries and later in China. The research contents are mainly concepts, measurement tools, research progress and so on. The scope of research is also gradually expanding. A number of studies have shown that the overall level of care preparedness of caregivers needs to be improved 9 , 10 , 11 . According to previous studies on care preparedness of family caregivers of stroke, ICU and chronic heart failure patients, the care preparedness is intimately linked to their nursing competence 12 , negative emotions 13 , and health-promoting lifestyle 14 , etc.

Based on the literature review, this research proposes the weakness of the previous studies. There is less research on the relationship of care preparedness with the positive aspects of caregiving of the caregivers themselves (subjective feelings generated during the caring process, such as satisfaction, enjoyment, happiness and honor). In addition, a majority of domestic and foreign researchers focus mainly on the nursing burden 6 , 7 , quality of life 5 and negative emotions 15 of family caregivers of MHD patients currently. Little is known about their care preparedness for caregiving, and the factors affecting the care preparedness have not been identified.

The Crisis of Physical Illness Model 16 suggests that serious physical illness (e.g., kidney failure) or injury can be considered a crisis. Family members and friends can also be affected by a crisis. A cognitive appraisal of the meaning of crisis suggests basic adaptive tasks and coping strategies. The family caregivers of the patient are also faced with similar adaptive tasks and coping strategies, such as maintaining appropriate relationships with healthcare professionals, managing their own uneasiness and remaining hopeful, maintaining family harmony and friendships with friends, and making appropriate preparations for an uncertain future. Within the perspective of the Crisis of Physical Illness Model, this study takes the care preparedness of family caregivers of MHD patients as an adaptive task. Exploring the current state of care preparedness and its influencing factors is equally feasible and actionable in this population.

In summary, the current care preparedness level of family caregivers of MHD patients was investigated in this study, and the influencing factors were analyzed in this study, in order to provide a basis for clinical targeted intervention guidance.

Participants and sampling

A descriptive cross-sectional survey was conducted to collect data from family caregivers of MHD patients, following the guidelines outlined in the STROBE statement. All methods were performed in accordance with the relevant guidelines and regulations. The study enrolled a total of 237 family caregivers of MHD patients selected from hemodialysis rooms of two tertiary hospitals in Wuhan, Hubei Province, China, between May to August 2020. The inclusion criteria for participants were as follows: ① caregivers aged over 18 and caring for patients with MHD for mother than 3 months; ② relatives of the patient, who were aged over 18, had cared for the patient for more than 1 month, and undertook most nursing tasks of the patient or spent the most time in nursing the patient; ③ caregivers who were conscious and able to independently complete the questionnaire or with the assistance of the researcher; ④ caregivers who were willing to participate in the survey and signed the informed consent. The exclusion criteria included: ① people who receive payment, such as caregivers or nannies; ② participants with prior cognitive impairment, mental or psychological diseases; ③ participants with severe heart, liver, kidney, lung, and brain diseases, etc.; ④ participants having had received psychological counseling before orin three months prior to this study. A total of 245 questionnaires submitted by caregivers were received, and 237 were valid, with an effective recovery rate of 96.7%.

According to the commonly used quantitative study sample size estimation method in nursing research, this study adopted multiple method to estimate sample size 17 . This method considered that the sample size was related to the number of independent variables, which was usually taken from 5 to 10 times the number of variables. In this study, there were 9 items of the general data questionnaire, 8 items of Care Preparedness Scale, 2 dimensions of Positive Aspects of Caregiving, and a total of 19 independent variables. Taking into account the possibility of 20% invalid questionnaires, the desired sample size would be 114–228 participants. Thus, the inclusion of 237 participants in the study exceeds the required sample size, satisfying the estimation requirements.

Measurement

Demographics survey.

The demographics survey addressed the gender, age, marital status, occupational status, education level, household per capita income monthly, the total time to take care of patients, daily nursing time, and the current living conditions of respondents. Meanwhile, whether there were co-caregivers or the respondents had chronic diseases were also examined.

Care preparedness scale (CPS)

The CPS was developed by Archbold et al. 8 in 1990, and sinicized by Liu Yanjin et al. 18 in 2016. It was primarily used to assess a caregiver's preparedness for caring for a patient. The CPS has 8 items, each of which is given a score ranging from 0 (very inconsistent) to 4 (very consistent) points according to the 5-point Likert scale method. The total score is from 0 to 32 points. A higher score indicates a higher level of care preparedness of the caregivers. The CPS has been widely used among caregivers of Chinese chronic patients and has demonstrated effectiveness and reliability 18 . In this study, the Cronbach's alpha coefficient for the CPS was calculated to be 0.917, indicating a good level of internal consistency.

Positive aspects of caregiving (PAC)

This scale was invented by Tarlow et al. 19 in 2004, and sinicized by Zhang Rui et al. 20 in 2007. It is mainly used for the assessment of positive aspects of caregiving of family caregivers. It consists of 9 items that are intended to measure two distinct dimensions of PAC: self-affirmation and outlook on life. Each item is answered with a score range of 1 (strongly disagree) to 5 (strongly agree) points according to the 5-point Likert 5-level scale method. The total score ranges from 9 to 45 points. A higher score implies that the caregiver think more positively. The PAC has been widely used among caregivers of Chinese chronic patients and has demonstrated effectiveness and reliability 20 . In this study, the Cronbach's alpha coefficient for the PAC was calculated to be 0.903, indicating a good level of internal consistency.

Survey methods

Prior to data collection, the researchers received training to ensure they were familiar with the standardized measurement procedures and criteria for properly completed questionnaires. Participants were provided with a link to the questionnaire through WeChat, a popular communication software in China. The researcher connected with the participants on WeChat (participants were added to the WeChat contact list), so that the participants could submit both the link and their responses directly through WeChat. The purpose of the study, informed consent process, and instructions for completing the questionnaire were explained on the first page. The caregivers submitted the questionnaire after completing it independently or under the guidance of the researcher. The researcher promptly checked the submitted questionnaires and addressed any incomplete ones on the spot. The implementation method was that the researcher immediately reviewed the questionnaire after receiving a prompt that the participant had completed the questionnaire. The researcher ensured that the questionnaire was complete and correctly submitted by the participant. Each participant was allowed to respond only once, and questionnaires with an answer time of less than 180 s or with identical choices were considered invalid. Participants were assured that their data would remain anonymous and confidential. The collected data were stored securely on a disk, accessible only to the study researchers, and strict confidentiality was maintained. After the completion of the questionnaire, the researcher checked for any omissions and collected the questionnaires.

Statistical methods

Statistical analysis was made by using SPSS21.0. General data of the study subjects were described with percent frequency(%), while the positive aspects of caregiving score, total care preparedness score and score per item were represented with mean ± standard deviation ( \({\overline{\text{x}}}\)  ± s). Data conformed to normal distribution. Therefore, care preparedness scores of MHD caregivers with different characteristics were compared using the two sample t-test or variance analysis. The influencing factors of care preparedness of family caregivers were investigated by multiple linear regression analysis. All P values are two-sided in this study. A P value smaller than 0.05 indicates a significant difference.

Ethical approval

Before being permitted to participate in the study, participants were informed of the purpose of the research, the meaning and data security. In addition, participation was voluntary and anonymous, they were informed of their rights and responsibilities and that they had the right to withdraw from participation at any time. This study was approved by the ethics committee of Renmin Hospital of Wuhan University (No: WDRY2022-K192). All participants gave their voluntary written informed consent prior to study participation.

Participants in this study were aged 18 to 76, averaging 55.30 ± 13.90 years. Most of the family caregivers were females. Household per capita income monthly was < 3000 yuan for 100 participants, 3000–5000 yuan for 71 participants, and > 5000 yuan for 66 participants. Daily nursing time was ≤ 4 h in 67 participants, 5–12 h in 110 participants, and ≥ 13 h in 60 participants. Among 237 participants, 77 had no co-caregivers, and 139 lived with patients. Other general information is shown in Table 1 .

Care preparedness and positive aspects of caregiving scores of family caregivers of MHD patients

The total score of care preparedness of family caregivers was 19.05 ± 5.64 points. The item scored the highest was coping with the stress of caring for patients [(2.68 ± 0.94) points], followed successively by obtaining help and information resources from medical systems [(2.42 ± 1.22) points], understanding patient needs and developing relevant services [(2.40 ± 1.28) points], addressing and handling some emergencies [(2.38 ± 1.06) points], holistic care readiness [(2.37 ± 1.25) points], providing mutually satisfactory care [(2.35 ± 1.29) points], nursing patient physiological needs [(2.34 ± 1.37) points] and nursing patient emotional needs [(2.07 ± 1.21) points]. The positive aspects of caregiving score of family caregivers was (31.28 ± 7.28) points.

Comparing care preparedness scores of caregivers of MHD patients with different characteristics

The univariate analysis involved the gender, age, marital status, occupational status, educational level, total time of caring for patients, and whether the caregiver had chronic illness. The differences of care preparedness scores were statistically significant ( P  < 0.05). Details are shown in Table 1 .

Relationship between care preparedness and positive aspects of caregiving of family caregivers of MHD patients

The Pearson correlation analysis results showed a significant positive correlation between care preparedness and positive aspects of caregiving (r = 0.690, P  = 0.000).

Multivariate analysis of care preparedness of family caregivers of MHD patients

Taking positive aspects of caregiving as an independent variable, univariate analysis results suggested that 7 variables had statistical differences. Therefore, a multiple linear regression analysis was conducted on these 7factors with care preparedness as the dependent variable. It was found that the total nursing time(< 2 years = 0;2–3 years = 1; > 3 years = 2),whether to have a chronic disease (none = 0; ≥ 1kind = 1) and positive aspects of caregiving (raw data entry) were the main factors influencing their care preparedness (all P  < 0.05) (Table 2 ).

A high care preparedness level can improve not only their own physical and mental health and quality of life, but also the quality of patient nursing and disease outcomes. In this study, the care preparedness scores of family caregivers with MHD patients are higher than the survey results of caregivers with enterostomy 12 and ICU patients 21 . It shows an intermediate level of care pareparedness in this population. There may be several reasons for that. Firstly, caregivers of MHD patients feel highly uncertain about the disease due to its complexity and uniqueness 22 . In addition, 57.38% of caregivers in this survey suffer chronic diseases themselves and lack of professional knowledge and skills. These factors affect their care preparedness to a certain extent. Secondly, 70.04% of caregivers are unemployed and thus may bear more intense financial stress. According to the study of Gitlin et al. 23 , the greater the financial pressure on the caregiver, the lower the care preparedness. Thirdly, Henriksson et al. 24 found that caregivers who lived with patients have a higher care preparedness level than those who did not live with patients. In this survey, 139 (58.65%) of caregivers live with patients, so they can better understand their physiological and emotional needs and handle emergencies. Fourthly, family caregivers have attracted the attention of and received increasing support from families, medical institutions and society in recent years. Good social support can enhance caregivers’ resilience to stress and improve their problem-solving skills. Besides, high-quality social support is an important protective factor of health-promoting lifestyles, which can improve care preparedness 14 .

It is also found in this survey that the caregivers who have spent more than 3 years caring for patients have a higher care preparedness level. The reason may be that the caring knowledge and experience accumulated by caregivers during the nursing process 12 enables them to undertake less psychological pressure, quickly adapt to their caregiving role, and timely make corresponding interventions when the patient's condition changes. Besides, MHD is a highly specialized and complex disease with many complications, so it takes a long time to master its nursing knowledge and skills. This may account for the finding that caregivers who have cared for MHD patients for less than 3 years have a lower care preparedness level. Therefore, in order to improve the care preparedness level of caregivers, it is suggested that caregivers should receive individualized and targeted training on relevant knowledge and skills in stages according to the length of caring time.

The study results indicate that caregivers with chronic diseases have a relatively low level of care preparedness. There may be two reasons for that. On the one hand, the caregivers with chronic diseases tend to experience more nursing burden due to their poor health status 6 . However, the nursing burden is significantly negatively associated with care preparedness 12 . Increased nursing burden worsens the physical health of the caregivers, which in turn adds to their nursing burden. As a result, a vicious circle forms. On the other hand, in-depth analysis of the general data of 136 caregivers with chronic disease suggests that 62 (87.3%) cases are above 61 years old, 70 (74.4%) cases are unmarried, divorced, or widowed, 62 (63.2%)cases do not live with patients, and the education level of 60 (62.5%) cases is junior high school or below. These caregivers have relatively poor physical health, more negative psychological emotions, inconvenient nursing, and inadequate nursing knowledge and skills. That may be the reason for their lower level of care preparedness. Therefore, more attention should be paid to the health of family caregivers. For caregivers with chronic diseases, other family members should be encouraged to actively participate in the nursing of the patient to reduce their burden and improve their care preparedness. In addition, the reason why caregivers with chronic diseases have a low level of care preparedness should be analyzed in depth based on their general demographic data, and more targeted and personalized intervention programs should be implemented to further improve their care preparedness.

Lawton et al. 25 proposed a two-factor theoretical model of caring feelings, arguing that caregivers do not always have negative experiences but also have positive experiences in the process of caring. This positive experience is called a positive aspects of caregiving, which refers to the subjective feelings generated by the caregivers during the nursing process, such as satisfaction, enjoyment, happiness, and honor. According to Table 2 , positive aspects of caregiving influence the care preparedness level of family caregivers of MHD patients. Specifically, the more highly positive aspects of caregiving of the caregiver’s, the higher the care preparedness level. The reason may be that caregivers with highly positive aspects of caregiving will take the initiative to seek for help and information from the medical system, actively respond to the pressure and emergency situations in the nursing process, understand and try to meet the physical and emotional needs of patients. In this process, caregivers affirm their own value and significance, and their care preparedness level is there by enhanced. Adequate care preparedness, good mental and physical health, sufficient nursing experience, knowledge and skills, great resilience to stress, a sense of benefiting from disease, and the strong ability to seek medical-related information and resources 14 , 26 enable the caregivers to think more positively in the nursing process, which further improves their care preparedness level. Consequently, a virtuous cycle is generated. Hence, for the aim of strengthening the care preparedness of caregivers, great importance should be attached to the emotional changes of family caregivers, and measures should be taken to induce their positive emotions, such as cognitive behavior intervention, psychological education, experiential care exchanges, etc. These approaches can help them recognize stress correctly and positively, provide them with more medical resources and social support, and increase their nursing knowledge and skills. As a result, caregivers can obtain more positive nursing experiences.

Situational leadership theory believes that individual care preparedness is dynamic 27 . Dynamic evaluation of caregivers’ care preparedness can provide reference for follow-up nursing and intervention of MHD patients, and may have a positive impact on the quality of care of patients. At the same time, this study also find a close positive correlation between care preparedness and positive aspects of caregiving. This study further enriches the research on family caregivers of MHD patients and provides reference for other researchers.

Limitations

Notwithstanding the notable outcomes of this investigation, it is imperative to acknowledge several constraints that should be taken into account.

Firstly, the data collection was limited to two tertiary hospitals in Wuhan, may limiting the generalizability of the results to other geographical areas within China. Conducting multi-center studies with larger sample sizes would help to enhance the generalizability of the results. Future research should aim to include a more diverse sample from multiple regions across China.

Secondly, this study has only discussed the effect of some general information and positive aspects of caregiving on their care preparedness. Further research should employ longitudinal designs and investigate additional variables to gain a more comprehensive understanding of the care preparedness of family caregivers. Long-term follow-up studies would provide valuable insights into the dynamic nature of care preparedness in this population.

Thirdly, it is noteworthy that the present investigation was conducted solely in China, and such, one must exercise prudence when extrapolating the findings to other nations, given the potential cultural variances between China and the Western context. Consequently, it would be advantageous to corroborate the outcomes of this study in family caregivers cohorts from diverse nations, while also acknowledging the cultural heterogeneity, in forthcoming research efforts.

In conclusion, the care preparedness of family caregivers of MHD patients remains to be continuously improved. Meanwhile, medical staff should emphasize the important role of total nursing time, whether the caregiver has a chronic disease, and positive aspects of caregiving in improving care preparedness in this population.

To improve care preparedness of caregivers, medical staff can provide targeted support and guidance for caregivers according to the influencing factors, such as implementing group psychological education, strengthening the training, offering social support, remote intervention (including family caregivers’ education through the media), and so on 28 , 29 . Meanwhile, caregivers should be evaluated dynamically, and information and emotional support should be provided for them 30 .

Data availability

The data that support the findings of this study are available from the corresponding author upon reasonable request. The data sets generated during or analyzed during the current study are not publicly available due to the subject confidential information.

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Acknowledgements

We would like to thank everyone who participated in this study , especially family caregivers of MHD patients. This paper was funded by Hubei Province Key Laboratory Open Project Nursing Specialty (No. 2022KFH028) and Hospital Project of Renmin Hospital of Wuhan University (No. HL2021ZC 02). The authors appreciate Hemodialysis Center of People's Hospital of Wuhan University for supporting this research.

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F.H. was the principal investigator. W.G. and Y.X. carried out analyses, wrote the initial draft manuscript and carried out data entry. All authors contributed to the design of the study, data collection and analysis, and editing of draft manuscripts.

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Wang, G., Yi, X. & Fan, H. Care preparedness of family caregivers of maintenance hemodialysis patients: a cross-sectional study. Sci Rep 14 , 18369 (2024). https://doi.org/10.1038/s41598-024-69502-4

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Some people think the world is wildly unpredictable, and are glad insurance can handle the risk and uncertainty they face. Other people believe their destiny is written in the stars, and consult a daily horoscope to reveal what is in store for them.

Either way, Caley Horan has the history of these things covered.

Horan, an associate professor in MIT’s history program, studies multiple topics related to how we handle uncertainty in modern American life. Her award-winning first book, “Insurance Era,” published in 2021 by the University of Chicago Press, examined a deep tension: Insurance is a collective endeavor in certain respects but is defined in individual terms, at least by the private sector.

“I realized there was a story about insurance in the second half of the 20th century that people hadn’t really written,” Horan says. “It became important to me to tell that story, and to think about both the welfare state and private insurance.”

Currently Horan is in the midst of book project tackling another unwritten story: how astrology became a thoroughly modern, commercialized, and American pastime.

That might seem like quite a departure, but actually, Horan says, her history of astrology grew out of studying insurance history. The connecting tissue is how people themselves view uncertainty, risk, and the future.

“The forms of astrology that evolved in the U.S. over the course of the 20th century turned away from chance, which insurance seeks to cover, and instead offered a theory of causation rooted in external natural phenomena,” Horan says. “The celestial bodies and movements of stars and planets are seen as determining forces, rather than the chance-based world of risk. This creates a clear sense of causation, and of time as cyclical rather than progressing. There’s a real appetite for that.”

In both cases, Horan is uncovering how some familiar aspects of contemporary life have taken their current forms.

“The fact that everything has a history is what drew me to history as a field,” Horan says. “It’s tremendously important to have a sense of the past, and I find it endlessly interesting and exciting.”

For her research and teaching, Horan was granted tenure at MIT last year.

An open field

Horan, who grew up in Colorado, attended Stanford University, where she was a defender on the soccer team while completing a double major in history and feminist studies.

“I settled on history because it seemed like a really open field,” Horan says. “You can study anything historically. If you want to study film, art, or if you want to study insurance or astrology, you can do so as a historian.”

Horan received her BA from Stanford in 2003, then attended graduate school at the University of Minnesota, where she settled on the history of insurance as her dissertation topic and earned her PhD in 2011. She joined the MIT faculty in 2015, while working to turn her thesis into her first book.

In “Insurance Era,” Horan scrutinized high-level political dynamics as the private insurance industry sought to limit the New Deal-era expansion of the public safety net, which it regarded as a threat to its business. Horan also studied this with the lens of a cultural historian, looking at how industry advertising, for instance, portrays the decision to acquire insurance as a highly individualistic endeavor, a matter of personal prudence and savvy.

Ultimately “Insurance Era” received critical acclaim, winning the 2022 Hagley Prize for the best book in business history, and it has just been published in a new paperback edition.

Astrology and the self

At the moment, Horan is researching and writing her history of astrology — or at least the modern American version of the practice. Earlier in America, what might be called “natural astrology” appeared in almanacs with forecasts about things like the best time to plant crops, as “part of an economy that had a very agrarian nature,” Horan says.

But that economy changed, and so did astrology: Going back a bit more than century, astrology became focused on the self, and became a viable business all by itself.

“The astrology that we know today in the United States is very recent,” Horan says. “A lot of what we might today call the therapeutic nature of astrology, which is focused on the self and self-knowledge and self-understanding, is a late 19th-century development. By the 20th century, astrology becomes commercialized and part of a capitalist economy.”

Newspaper horoscope columns, for instance, date to 1930, along with the invention of “sun-sign” astrology, divided by birth dates.

“I think modern astrology has offered people, and continues to offer people, an interpretive framework for understanding identity, self, and relationships to others,  at a time when matters of work and identity have been up for grabs,” Horan says.

For her part, Horan’s own sense of identity as a historian is well-established, even as her work evolves: She will continue to pursue topics combining modern business, self-identity, uncertainty, and even health, studying those things in commercial and cultural terms. After she finishes her work on astrology in America, Horan intends to start writing about caregiver work, a growing part of the U.S. economy. And, she says, she continues to follow developments in insurance closely, with a return to that topic possible as well.

“I do feel some of the big-picture issues I have raised about insurance are very relevant,” Horan says. “That includes issues about the power we accord to private industry, how we think about collective organization, how Americans think about data and who controls their data, and how society distributes its resources, including basic insurance coverage. I think we’re heading into uncharted territory with some of these matters, and I do hope some of the questions I’ve raised continue to inform the way scholars are thinking about them.”

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About 400 Million People Worldwide Have Had Long Covid, Researchers Say

The condition has put significant strain on patients and society — at a global economic cost of about $1 trillion a year, a new report estimates.

By Pam Belluck

Pam Belluck has been reporting about long Covid since the condition first emerged.

About 400 million people worldwide have been afflicted with long Covid, according to a new report by scientists and other researchers who have studied the condition. The team estimated that the economic cost — from factors like health care services and patients unable to return to work — is about $1 trillion worldwide each year, or about 1 percent of the global economy.

The report, published Friday in the journal Nature Medicine, is an effort to summarize the knowledge about and effects of long Covid across the globe four years after it first emerged.

It also aims to “provide a road map for policy and research priorities,” said one author, Dr. Ziyad Al-Aly, the chief of research and development at the V.A. St. Louis Health Care System and a clinical epidemiologist at Washington University in St. Louis. He wrote the paper with several other leading long Covid researchers and three leaders of the Patient-Led Research Collaborative, an organization formed by long Covid patients who are also professional researchers.

Among the conclusions:

About 6 percent of adults globally have had long Covid.

The authors evaluated scores of studies and metrics to estimate that as of the end of 2023, about 6 percent of adults and about 1 percent of children — or about 400 million people — had ever had long Covid since the pandemic began. They said the estimate accounted for the fact that new cases slowed in 2022 and 2023 because of vaccines and the milder Omicron variant.

They suggested that the actual number might be higher because their estimate included only people who developed long Covid after they had symptoms during the infectious stage of the virus, and it did not include people who had more than one Covid infection.

Many people have not fully recovered.

The authors cited studies suggesting that only 7 percent to 10 percent of long Covid patients fully recovered two years after developing long Covid. They added that “some manifestations of long Covid, including heart disease, diabetes, myalgic encephalomyelitis and dysautonomia are chronic conditions that last a lifetime.”

The consequences are far-reaching, the authors wrote: “Long Covid drastically affects patients’ well-being and sense of self, as well as their ability to work, socialize, care for others, manage chores and engage in community activities — which also affects patients’ families, caregivers and their communities.”

The report cited estimates that between two million and four million adults were out of work because of long Covid in 2022 and that people with long Covid were 10 percent less likely to be employed than those who were never infected with the virus. Long Covid patients often have to reduce their work hours, and one in four limit activities outside work in order to continue working, the report said.

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Caregiver Role Strain in Caring for Vulnerable Persons Living with HIV: Correlates of Caregiver and Care Recipient Reports

Mary mitchell.

1 Friends Research Institute, Baltimore, MD

Eric Hansen

2 Department of Supportive Care, Roswell Park Comprehensive Cancer Center, Buffalo, New York, USA

Tuo-Yen Tseng

3 Johns Hopkins Bloomberg School of Public Health, Department of Health, Behavior and Society, Baltimore, MD

Zachary Catanzarite

Dulce cruz-oliver.

4 Johns Hopkins University School of Medicine, Baltimore, MD

Lauren Parker

Amy knowlton.

Informal care of family and friends is important for the health and well-being of disadvantaged persons living with HIV (PLWH). Caregiver role strain may threaten the function and continuity of their main relationships and their health impacts. Data were from a disadvantaged, primarily African American, sample of PLWH care recipients. Caregiver role strain was operationalized as a latent factor measured by variables including PLWH’s perceptions of their caregiver not wanting or complaining about helping them or wanting a break. We found that greater caregiver role strain was associated with higher levels of HIV-related stigma and depressive symptoms. Lower role strain was associated with more collaborative problem solving and shared medical treatment decision-making. Caregiver role strain was linked to disadvantaged PLWHs’ worse stigma and mental health; collaborative engagement in care and coping assistance were protective of role strain. Caregiving relationship-focused research and interventions are needed for resourcing and sustaining disadvantaged African American communities’ caregiving and health.

INTRODUCTION

Informal (unpaid) caregiving, often operationalized as emotional support or instrumental assistance, is important to the health and well-being of persons with serious or impairing conditions and increasingly important to community health with population aging ( Cahill & Valadez 2013 ; National Academies 2016 ). Caregivers, often family or friends, may facilitate care recipients’ health in part through coping assistance or facilitating their engagement in healthcare and treatments ( National Academies 2016 ). Caregiving is especially important to the health and resilience of socioeconomically disadvantaged African American communities. Disadvantaged African Americans experience high rates of chronic conditions, physical limitation and mortality, and live in deprived neighborhoods with high rates of drug dependence and family disruption that impede their access to and health impacts of care ( Golub 2010 ; Sanders, Lim & Sohn 2008 ). African Americans compared to US whites are more likely to provide informal care and low-income African Americans provide more intensive forms of caregiving, including for PLWH ( Schnall et al., 2018 ; Mosack et al. 2016 ). Research is needed to understand experiences of caring for African American PLWHs and role functions linked to health, and challenges caring for such vulnerable loved ones in this context ( Sambasivam et al. 2019 ; Williams 2003 ). In the present study we examined care recipient factors and caregiver-recipient relationship characteristics associated with caregiver’s role strain among PLWH who use illicit drugs. Our findings will inform relationship-focused, strengths-based approaches to policy and intervention for promoting vulnerable African Americans’ health, with implications for community resilience.

Caregiving as an interpersonal support & stress process

Caregiving can be a highly stressful role, adversely affecting caregivers’ and care recipients’ health and well-being ( Knowlton et al. 2021 ; Mitchell et al. 2012 ; Mitchell et al. 2015a ). The extant literature on adverse outcomes of caregiving is conceptually limited and emphasizes caregiver reported burden or psychological distress, which is understudied among African American caregivers (Lingler et al 2008). Little attention has been given to interpersonal, potentially antecedent signs of caregiver role strain and its possible links to role function and PLHW health ( Williams 2003 ). Unpaid caregiving in the context of poverty, illicit drug use, and other contextual challenges constrains communities’ already limited (emotional, material, financial) resources and likely exacerbates caregiver role strain, conceptualized as difficulty fulfilling a caring role or felt obligation ( Mitchell & Knowlton 2012 ; Mosack et al. 2016 ; Singh et al. 2011 ). Stigma and social disapprobation of potential norm violation while using drugs further restrict disadvantaged PLWHs’ access to care and interfere with their support networks’ functioning and viability ( Golub 2010 ). Caregiver role strain, measured by care recipient reports of their caregivers’ negative attitudes toward helping them or wanting a break from the relationship, may be an important sign of or antecedent to caregiver distress (Lingler et al. 2008). Identifying individual-level and relationship factors linked to strains in main caring relationship will contribute to theories and methods of identifying and ameliorating African Americans’ context-specific stress and bolstering their mutual support and health.

Illicit drug use is linked to poor mental and physical health and unmet care needs among PLWHs ( Milloy et al. 2012 ; Singh et al. 2011 ). Depression can contribute to negative interactions or problematic coping that may exacerbate caregivers’ role strain and impede their supportive function important to health ( Pirraglia et al. 2005 ). In a prior study, a high level of depressive symptoms among African American PLWH was associated with their main caregivers’ high depressive symptoms and their lower support to their caregivers ( Knowlton et al. 2009 ). PLWH-caregiver collaborative problem solving and shared decision-making about health treatments have been found to be associated with PLWHs’ uptake and adherence to antiretroviral therapy and improved health outcomes ( Cruz-Oliver et al. 2019 ; Johnson et al 2006 ; Gross et al. 2014 ; Peek et al. 2016 ). Depressive symptoms include interpersonal aspects of depression that may interfere with PLWHs’ engagement with family and friends and health resources ( Knowlton et al., 2009 ). Being a main caregiver may be socially isolating and impede caregivers’ own social support and health, especially for those caring for disadvantaged, stigmatized persons ( Brummett et al. 2012 ; Greene et al. 2013 ; Mitchell et al. 2012 ). In a prior study, African American caregivers’ reported role overload (overwhelm) in caring for their PLWH care recipient was associated in the class with less social network support and physical limitation; being in the lower support network class was associated with being female and HIV position ( Mitchell & Knowlton, 2012 ).

Our primary study objective was to identify care recipient and relationship function factors associated with greater role strain among main caregivers of disadvantaged African American PLWH. We hypothesized that PLHW care recipient reports of HIV stigma, depressive symptoms, physical limitation, and current drug use would be associated with greater perceived caregiver role strain. Our secondary objective was to identify aspects of the caregiver-recipient relationship and PLWHs’ support network that may ameliorate their caregivers’ role strain. We expected that having a larger social support network, more collaborative problem-solving and healthcare decision-making with caregivers would be associated with lower reports of caregiver role strain.

The current analysis used baseline data from the AFFIRM Care study (2013-2018), which examined social network factors associated with advanced care planning, health, and well-being among socioeconomically disadvantaged PLWH who use drugs and their main caregivers (Mitchell et al. 2018; Hansen et al. 2019). For the present study, we used data from the first 325 participants, who were recruited from the Johns Hopkins adult HIV clinic and community venues. The recruitment criteria included being an adult (18 or over), HIV seropositive status, and either currently or formerly using hard drugs (i.e., heroin, cocaine). The surveys were administered by computer-assisted personal interview, with sensitive information elicited by audio computer-assisted self-interview. The AFFIRM study was approved by the Johns Hopkins University Institutional Review Board.

We constructed the outcome as a latent factor measuring role strain, which comprised four items: “In the past 30 days, how often did you feel that [your main supportive person] wished they didn’t have to help you so much?,” “In the past 30 days, how often did [they] complain about helping you out?,” “In the past 30 days, how often did [they] act hostile about helping you?” and “In the past 30 days, how often have you felt you needed some time away from [them]?” Response options were on an ordinal scale from 0 = Rarely or never to 3 = Most of the time or always.

HIV-related stigma was a latent factor measured by 6 items such as, “Thinking about having HIV… how much do you feel that you need to hide it?” and “how much do you feel blamed by others?” with response options ranging from 0 = Not at all to 3 = Very much. Depressive symptoms were measured by the Community Epidemiological Survey – Depression (CES-D; 10-item version) scale, including “During the past week, I felt that everything I did was an effort” and “During the past week, my sleep was restless” ( Torres et al. 2012 ). Response options ranged from 0 = Rarely or none of the time to 3 = Most, or all, of the time. Physical functioning limitations was a sum of two items, “How much does your health now limit your moderate activities such as moving a table, pushing a vacuum cleaner, or playing a sport?” and “How much does your health now limit your climbing several flights of stairs?” with response options from 0 = No, not limited at all to 2 = Yes, limited a lot. The sum was dichotomized into 0 = None vs. 1 = Any limitation. Current drug use was measured by three items assessing use of heroin, cocaine, or other stimulants (such as speed, amphetamines, or methamphetamines) in the past 6 months. These items were summed and dichotomized such that 0 = No current illicit drug use vs. 1 = Used one or more drugs in the previous six months. Self-reported undetectable viral load was used to assess optimal HIV management.

Caregiver-care recipient relationship function was measured by problem solving, “When we are stressed, we talk about the problem and how to deal with it together,” with responses ranging from 1 = Very rarely to 5 = Very often; and shared healthcare decision-making, “How often does or could [your main supportive person] help you in making decisions about your medical treatment?,” with response options, 0 = Never to 3 = Always. The decision-making item was dichotomized into 0 = Never vs. 1 = Sometimes, Usually, or Always. Size of perceived support network was measured by a network inventory based on Barrera (1986) that elicited the names and total number of persons the participant reported they could go to for emotional support, physical assistance, material aid, health advice, and opportunities for enjoyable social participation.

Data Analysis

Exploratory factor analyses (EFAs) were run on the caregiving role strain, HIV-related stigma, and network size latent factors. Exploratory factor analyses were preferred given the lack of previous research to guide expectations about factor composition for these measured variables and constructs. After the measurement portion of the model was fit, the structural portion of the structural equation model was tested, whereby all the exogenous latent factors and independent measured variables were entered in the model with the endogenous latent variable, caregiving role strain, as the outcome. No modifications were made to the model.

Sample respondents were nearly all African American (96.6%) and ranged in age from 24-67, with a mean of 52.7 and a standard deviation of 6.5 years ( Table 1 ). Fewer than half of the sample respondents were female (43.3%). Fewer than half of sample respondents reported using heroin, cocaine, or stimulants in the previous 6 months (38.0%). Most participants reported optimal viral control with an undetectable viral load (84.8%). Main caregivers comprised PLWHs’ older generation kin (15.0%), same generation kin (15.0%), younger generation kin (17.2%), partners (26.7%), or friends (16.6%); only 9.5% did not name a main caregiver. The loadings for the stigma latent factor ranged from .65 to .92 and the caregiving role strain latent factor loadings ranged from .56 to .97 ( Table 2 ).

Description of study participants living with HIV and histories of illicit drug use (AFFIRM Care study; Baltimore, MD; N = 325)

Frequencies and factor loadings of study indicator variables in latent factors (AFFIRM Care study; N = 325).

The fit statistics for the EFA for the role strain factor achieved good fit (Comparative Fit Index (CFI) = 1.00, Root Mean Square Error of Approximation (RMSEA) = .03, 90% Confidence Interval (CI) = [.00, .13]), as did the fit of the stigma EFA (CFI = .98, RMSEA = .08, 90% CI = [.05, .11]) and network size factor (CFI = .99, RMSEA = .08 [.03, .12]). The fit statistics for the overall structural model achieved adequate fit (CFI = .95, RMSEA = .04, 90% CI = [ .03, .05]).

Results from the structural model indicated that caregiver-recipient problem solving was the strongest correlate with role strain (β= −.33, p < .001), while HIV stigma was the second strongest correlate (β = .28, p < .001) and in the opposite direction. Greater caregiver role strain was additionally associated with depressive symptoms (β =.23, p < .01) and shared treatment decision-making (β =−.14, p < .01). Significant correlations were found between network size and shared decision making, collaborative problem solving, and HIV stigma. Physical limitations, current drug use, viral suppression and network size were non-significant, as were the control variables of sex and age. The R 2 value of .31 indicated that the correlates explained 31% of the variance in the caregiver role strain factor.

Our results, consistent with our hypotheses, indicated that disadvantaged African American PLWHs’ perceptions of their main caregivers’ role strain (defined as ambivalence, resentment, or hostility toward helping them, or their care recipient wanting a break from them), was associated with PLWHs’ greater perceived HIV-related stigma and depressive symptoms. Further, caregiver role strain was linked to lower levels of caregiver-recipient shared healthcare decision-making and collaborative problem solving, which has been linked to PLWHs’ HIV treatment adherence. Contrary to expectation, care recipients’ physical limitations, current drug use status and support network size were not significant. Elucidating caregiving relationship and care recipient factors associated with caregiver role strain contributes to a better understanding of caregiving relationship dynamics associated with disadvantaged, stigmatized African American’s health-related behaviors and health outcomes, and their unacknowledged, unpaid caregivers’ support resource needs. The findings will inform new, relationship-focused approaches to address African Americans’ stigmatizing conditions and health disparities by improving caregiver-recipient collaborative function and resources.

HIV-related stigma may strain relationships with family or friends relied on for support by vulnerable PLWH. Caregivers’ affiliation with PLWH care recipients who use drugs may affect caregivers’ stigma perceptions, which may be compounded for disadvantaged African American caregivers who are themselves living with HIV or share other vulnerabilities with their care recipient. Stress of HIV stigma may significantly decrease the quality and function of the caregiving relationship and lead to caregiver role strain.

That PLWH with greater depressive symptoms perceived higher caregiver role strain may be explained by depressive symptoms heightening negative perceptions of their caregiver’s attitudes toward caring for them. It is also plausible that PLWHs’ depressive symptoms may be a result of negative interactions with their caregivers. Unpaid caregiving for people with limited access to basic resources or professional care may constrain their caregivers’ already limited resources (emotional, financial, material) and jeopardize the quality and viability of the relationships. Longitudinal research is needed to better understand caregiving processes over time and effects on caregiver role strain of other stressors or mutually exclusive demands, such as performing wage earner or parenting roles.

Caregiver-recipient shared problem solving and medical treatment decision-making were found to be negatively associated with caregiver role strain. The finding suggests relationship functioning important to caregiver roles in this population, and ways to detect potential threats to their function and continuity. Dyads who turned to each other for everyday problem-solving as well as medical treatment decision-making were at decreased risk of caregiver role strain. This may be indicative of better communication and mutuality in the relationship overall ( Li & Loke 2014 ). Prospective studies are warranted to further examine context-specific aspects of caregiving relationships and care processes important to reducing challenges to caring for stigmatized loved ones within disadvantaged African American communities and to ensuring their viability and health (Dilworth-Anderson 2020).

Limitations

Our use of cross-sectional data precludes any causal claims between the independent and dependent variables. The data may also have limited generalizability due to the sample being drawn from PLWH recruited mostly from medical clinics. Disadvantaged African American PLWH with less access to healthcare or social support are not represented. Finally, while the R 2 value indicated that the results explained 31% of the variance in the outcome, there are likely additional factors that could add to the explanatory power of the study, such as caregivers’ social environmental stressors and support networks.

Implications

Making visible and ensuring resources for African American community caregiving of stigmatized loved ones is important for their viability and engagement in and health benefits of healthcare. Our results suggest the importance of screening and intervention with disadvantaged African American PLWH who use drugs and their caregivers, who may experience high levels of role strain, stigma, and depressive symptoms. Intervening with caregiving dyads is important for improving and sustaining unpaid care for this population vulnerable to disparities in morbidity and mortality. Promoting their collaborative problem-solving and health treatment decision-making and other skills and resources may be important new approaches to improving vulnerable African Americans’ health and reducing their loved ones’ strains in caring for them. Dyad-focused interventions on interpersonal processes of coping and healthcare engagement are important for improving vulnerable African American community health and sustainability. Understanding barriers to care in main relationships helps make visible the health-promoting and health costs of caregiving, and the particular burden of caregiving borne by African American women to this day.

This study fills a gap in the research on main caregivers of vulnerable African American PLWH with histories of illicit drug use. With PLWH aging, their relationship with their main caregivers have increased importance to their mental health and ability to manage their complex chronic conditions. The findings will inform novel approaches to facilitating community- and home-based care of stigmatized persons with complex co-occurring chronic conditions. Intervention to promote collaborative function of disadvantaged PLWHs’ main relationships may help ameliorate stress of caregiving in this community and its potential proliferation and contribute to improved health outcomes of caregivers and care recipients.

The findings suggest that intervening on HIV stigma, depression, and caregiving dyads’ shared problem solving and medical treatment decision making are important to reducing caregiver role strain and have implications for African American community health and resilience. Future studies are merited to understand the causal direction of associations and to identify other resources and stressors that affect African American communities’ challenges caring for their loved ones.

Structural model of caregiver role strain regressed on PLWH care recipient-reported individual-level characteristics, dyad-level relationship factors, and support network size, adjusting for sex and age (AFFIRM Care study; Baltimore, MD; N =325).

Bolded lines indicate significant paths; dotted lines indicate non-significant paths.

* p < .05, ** p =.01, *** p =.001.

Model fit: Comparative Fit Index (CFI) = .95, Root Mean Square Error of Approximation (RMSEA) = .04, 90% Confidence Interval (CI) = [.03, .05].

Acknowledgments

This study was supported by grants R01 DA019413 and R01 NR14050-01 from the National Institutes of Health, and Center for AIDS Research (CFAR) grant 1P30 AI094189.

All authors declare that they have no conflicts of interest.

Informed consent was obtained from all individual participants included in the study.

Ethical approval: All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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