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Comparative analysis of the stress process in AIDS caregivers: Gay male partners, Anglo women, and Latinas

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Comparative analysis of the stress process in AIDS caregivers: Gay male partners, Anglo women, and Latinas

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COMPARATIVE ANALYSIS OF THE STRESS PROCESS IN AIDS
CAREGIVERS: GAY MALE PARTNERS, ANGLO WOMEN, AND
LATINAS
Copyright 2000
By
Burton M. Stiefel
A Dissertation Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
in partial fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(Social Work)
May 2000
Burton M. Stiefel
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UMI Number: 3054905
Copyright 2000 by
Stiefel, Burton Matthew
All rights reserved.
___ ®
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UNIVERSITY OF SOUTHERN CALIFORNIA
THE GRADUATE SCHOOL
UNIVERSITY PARK
LOS ANGELES. CALIFORNIA 90007
This dissertation, written by
..........
under the direction of h. Dissertation
Committee, and approved by all its members,
has been presented to and accepted by The
Graduate School, in partial fulfillment of re
quirements for the degree of
DOCTOR OF PHILOSOPHY
Dean of Graduate Studies
Date ..Apxil...25.,...20jQ0
DISSERTATION COMMITTEE
Chairperson
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ii
TABLE OF CONTENTS
Page
List of Tables v
List of Figures vi
Abstract vii
Chapter
1. Statement of the Problem 1
Purpose of Study 3
Infection and Prevalence 4
Cost to the System 5
Role of AIDS Caregiving 7
Social Context of AIDS 7
Prevalence of Caregivers 9
Caregiver Depression 11
Relevance to the Study of Social Work 13
2. Literature Review 13
Conceptual Overview: Stress and Coping Model of Caregiving 15
The Stress Process Affects People Differently 20
AIDS-Related Caregiving and Stress 22
Caregiver Care Receipent Relationship 25
Gay Male Partner AIDS Caregivers 27
Female AIDS Caregivers 29
Latina AIDS Caregivers 32
Differences in the Three Groups of AIDS Caregivers 38
Study Variables 39
Background Factors 39
Income 39
Age 40
Self-reported health 41
Primary Objective Stressors 43
Activities of Daily Living 43
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iii
Primary Subjective Stressor 45
Role Overload 45
Secondary Subjective Stressor 46
Financial Concern 46
Role Captivity 47
Mediators 48
Mastery 49
Emotional Support 51
Depression 55
Summary of Literature 56
Hypotheses 57
3. Methodology 60
Overview 60
Study and Sample for Gay Partners and Anglo Women 60
Study and Sample of Latinas 63
Instrumentation 65
Measures 66
Background Variables 66
Primary Objective Stressors 66
Primary Subjective Stressors 67
Secondary Subjective Stressors 68
Mediators 69
Outcome Depressive Symptomatology 71
Data Analysis 72
Delimitations 72
Limitations 77
Summary 77
4. Results 79
Respondent Characteristics 79
Path Model Variables 81
Results of the Path Models 83
Gay Partners 83
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Anglo Women
Latinas
Comparison of the Three Groups
90
96
102
5. Discussion 111
Implications for Future Research 123
Conclusion 124
References 127
Appendices 155
A. Scales 156
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List of Tables
Table________________________________________________ Page
1. Regressions Analyzed For Each Group of AIDS Caregivers 66
2. Sociodemographic Characteristics of AIDS Caregivers 74
3. Means and Standard Deviations of Major Variables 75
4. Gay Partners Correlation Matrix 79
5. Gay Partners Standardized Regression Coefficients of all Paths 81
6. Anglo Women Correlation Matrix 87
7. Anglo Women Standardized Regression Coefficient of all Paths 90
8. Latina Correlation Matrix 93
9. Latina Standardized Regression Coefficient of all Paths 96
10. Gay Partners Unstandardized Regression Coefficients
Of Significant Paths 101
11. Anglo Women Unstandardized Regression Coefficients o f
Significant Paths 102
12. Latinas Unstandardized Regression Coefficients of
Significant Paths 103
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Figures
List of Figures
Page
1. Conceptual Model for AIDS Caregivers 18
2. Hypothesized Path Mode for AIDS Caregivers 53
3. Results of Regression-Based Path Analysis For Gay Partners 82
4. Results of Regression-Based Path Analysis For Anglo Women 89
5. Results of Regression-Based Path Analysis For Latinas 97
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vii
ABSTRACT
The primary objective of this research is to examine the degree to which a
caregiver stress process model differs across three groups of informal AIDS
caregivers: Anglo gay partners, Anglo females, and Latinas. This study uses
secondary data from two sources: 1) the 1990-1994 AIDS Care Study, funded by
the National Institute of Mental Health and the National Institute on Aging; and 2)
the 1995-1996 Latina AIDS Caregiver Study, funded by the State of California
Universitywide AIDS Research Programs. The theoretical framework for this
study is grounded in research by Pearlin and colleagues (e.g. Pearlin, 1989;
Pearlin et al, 1990; Pearlin, Aneshensel, & LeBlanc, 1997; Pearlin & Aneshensel,
1997). The major objectives of this research were: 1) to analyze, across groups,
models of caregiver stress on depression; and 2) to examine, across groups,
models of stress mediation including the effects of emotional support, and
mastery.
This study utilized data from a cross-sectional panel survey of 192 Anglo
gay partners, 129 Anglo females, and 154 Latinas. Face-to-face interviews were
conducted using the conceptual model and instruments of Pearlin and colleagues.
The respondents were queried about primary stressors (burdens stemming from
the care of the person with AIDS); secondary stressors (strains that arise as a
consequence of providing care such as feeling captive in the role and financial
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viii
concerns); stress mediators (emotional support and mastery); and the outcome of
such as depression.
A causal model using regression-based path analysis was used to estimate
the effects of exogenous and endogenous variables o f these three models. The
direct and indirect effects were postulated from the stress-process model and
supporting empirical literature. The findings clearly suggest the similarities and
differences in stress process models for these diverse groups of informal AIDS
caregivers. The results of gay partner path analysis resembled the hypothesized
model most closely. Age had no impact on primary stressors, secondary stressors,
or the outcome depression for the Latina sample. Mastery did not play a
mediating role for Anglo women, as it did for the gay partners and Latinas.
However, the relationship of primary and secondary stressors to depression seem
similar for all three samples, and findings are consistent with Pearlin’s theoretical
model and supporting literature.
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Chapter 1
Statement of the Problem
AIDS has created biological, psychological, social, and cultural
ramifications of an unforeseen variety and scope. Compounding the physical
suffering caused by HIV and AIDS, people with AIDS (PWAs) must also endure
stigmatizations that negatively affect their psychological well-being as well as
that of their friends and loved ones (Shilts, 1987; Institute of Medicine, 1998;
Sontag, 1987). Because AIDS has proven itself to be an extremely expensive
disease to treat, requiring increasingly large amounts of resources and substantial
planning at every level of society, caring for PWAs routinely falls in the hands of
their lovers, friends, and family (Leblanc et al., 1997). And given the increase in
AIDS cases across the United States among poorer populations, it is likely that
this trend will continue to increase (Leblanc et al., 1997; Turner & Catania, 1997;
Wardlaw, 1994;). There is, then, a general shift in the United States from hospital-
based to community-based and home care in order to control health care costs.
(McCann & Wadsworth, 1992; Turner & Catania, 1997; Ravis & Siegal, 1991;
Wardlaw, 1994).
The second decade of AIDS has produced a number of further changes in
caregiving (Land & Hudson, 1999). With the advent of new medications, AIDS
is increasingly defined as a chronic rather than a necessarily fatal disease.
Moreover, as treatment regimens improve, many PWAs will require greater
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cumulative assistance and care from lovers, family, and friends over the course of
their illness (LeBlace et al, 1997; (Land & Hudson, 1997). Sustained care of a
chronically ill loved one often places extremely stressful demands on the
caregiver. The majority of studies investigating this phenomenon have, however,
been of caregivers to relatives impaired by Alzheimer’s disease or a similar
progressive cognitive disorder (e.g., Aneshensel et al., 1995; Baumgarten, 1989;
Schulz, Vistainer, & Willimson, 1990; Wright, Clipp, & George, 1994). To date,
there have been relatively few studies that have investigated the impact of
attending to the needs of PWAs on caregivers. The available research suggests
that AIDS caregivers suffer a great deal of emotional distress as providers of
informal care (Folkman, Chesney, & Christopher-Richards, 1994; Leblanc,
London, Aneshensel, Tumer& Catania, 1997; Pearlin et al., 1994; Pearlin et al.,
1988; Pearlin et al., 1997; Wardlaw, 1994; Walker, Pomeroy et al., 1996;
Wardlaw, 1994; Lebanc, et al. 1995). This study assumes that the stress indemic to
the social context of AIDS and AIDS caregiving varies among subgroups of
caregivers, and that this may be reflected in the differential models of the stress
process.
No studies have attempted to examine stress models of depression among
Anglo gay male partners, Anglo family female caregivers , and Latina AIDS
caregivers, using Pearlin’s stress process model. The examination of these three
AIDS caregiver groups is important for several reasons. First, it is necessary
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because there is little literature on this topic. Second, practitioners need this
information in order to design, implement, and offer services that may mediate or
alleviate varying conditions linked to depression among the three groups. Third,
the magnitude and scope of the AIDS epidemic necessitates sustaining this crucial
system of informal health care (Pearlin et al., 1994; Turner et al., 1994; Folkman,
1998). Fourth, there is relatively little known of the stress process of these groups
and how it may differ for gay Anglo partners, Anglo women and Latino AIDS
caregivers. In particular, available literature demonstrates that Latina AIDS
caregivers face challenges and stressors that are, in many ways, different and
more severe than those experienced by other caregivers (Kaplan, Marks &
Mertens, 1997; Land, 1998; Land & Hudson, 1997; Land & Hudson, 1999;
Pearlin et al., 1994).
Purpose of Study
This research project relies on empirical and theoretical literature
concerned with the stress process model (e.g.Pearlin, 1991), and research from
studies on caring for older adults and AIDS patients. The overarching purpose of
this study is to examine the degree to which the presented model of stress
predicting depression varies across the three groups of caregivers. This research
project has several objectives: a) To examine the relationship between background
characteristics of AIDS caregivers, stressors, stress mediators and depression for
three groups of AIDS caregivers (Anglo gay partners, Anglo women and Latinas).
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4
b) To assess if there are unique predictors of depression for three AIDS caregiver
groups (Anglo gay men, Anglo women, and Latinas).
c) To investigate any unique coping resources, for three AIDS caregiver groups
(Anglo partners, Anglo women and Latinas), that mediate the affect from the
stressors of AIDS informal caregiving on depression.
Infection and Prevalence
Nationwide, it is estimated that one out o f 250 people is infected with
Human Immunodeficiency Virus (HIV). Every year an additional 40,000 to
80,000 people are infected with HIV (NIH, 1999). AIDS is a serious medical
illness that has rapidly increased to epidemic proportions. In the United States
alone there are over 900,000 AIDS cases, and an estimated 3.5 million adults are
believed to be infected with HIV (Centers for Disease Control, 1998).
While the direct impact of AIDS has been considerable, the range of the
epidemic reaches far beyond the individuals infected with HIV and diagnosed
with AIDS. The AIDS epidemic has had wide reaching ramifications on the social
networks that surround and support people with AIDS (PWA) (Turner and
Catinia, 1997). Within these social networks there have been drastic changes in
the structure of families and support systems, shifts in social roles that lead to
financial problems, and the possibility of health and mental health problems
including grief and loss. The potential for psychological problems resulting from
the care of AIDS patients is potentially great, comprising what may justifiably be
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5
called a “second epidemic.” In a study of national and central-city samples,
Turner, Catania, and Gagnon (1994) estimate that over 15 % of the entire nation
and 23.5% of individuals living in United States central cities personally know
someone with AIDS. Furthermore, it can be difficult and expensive to obtain a
comprehensive picture of those who provide care to someone with a stigmatized
disease such as AIDS (Mullan, 1998).
Cost to the System
While the informal system, made up of friends, partners, spouses and
traditional family member, depends on the support of traditional health care
systems for its continued viability, the latter system increasingly depends on the
former to accommodate the rise in chronic AIDS cases. Indeed, without the
assistance provided by the informal system, community programs would quickly
be sapped of their already scares resources and the medical care system would be
overwhelmed (Leblanc et al, 1997). Just as the survival time of PWAs increases
with advances in medical treatment, so too does the importance of the of the
informal health care system (Benjamin, 1988; Jones and Stryker, 1993).
It is likely that an informal care system which helps to maintain patients in
the community, rather than in an institutional setting, is of humanitarian benefit to
the PWA. The system may also bear some demonstrable economic benefit for the
society at large. There is evidence suggesting that the greater the informal support
and economic access to residential care among gay men, the lower average length
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6
of a hospital stay (Kelly, Chu, Buehler, 1993). In fact, the cost of residential
health care for HIV infection is considerably lower than the cost of inpatient
hospital services or nursing home care (Benjamin, 1988; Watkins, 1998). Seeing
that community support services and residential care probably reduce the cost of
treating AIDS patients, informal caregivers provide an important economic
service by maintaining PWAs in the community (Turner and Catania, 1977).
Even though the potential benefits of informal AIDS caregiving are great,
there are costs other than economic that result form AIDS, and a large measure of
these can be expected to fall on informal caregivers (LeBlanc et al., 1997; Pearlin
et 1994; Wardlaw, 1994). In particular, there is reason to believe that informal
AIDS caregiving can have negative consequences for the caregivers themselves.
The literature on older adults consistently associates caregiving with significant
psychological distress and depression (e.g. Deimling and Bass, 1986; Fengler and
Goodrich, 1979; Gallagher et al., 1989; Gallo, 1990; Gilhooly, 1984; Haley et al.
1978b; Hooker et al., 1992; Horowitz, 1979; Horowitz and Shindleman, 1983;
Pearson et al., 1988; Pruchno and Resch, 1989; Rabins et al., 1990; Vitaliano et
al., 1980; Willaimson and Schulz, 1990; Zarit et al., 1980). In addition, Schulz
and colleagues (1995) reviewed the literature on caring for patients afflicted with
dementia and found that virtually all studies reported elevated levels of depressive
symptomatology among caregivers.
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Role of AIDS Caregiving
The kind of practical support needed by persons with AIDS, includes
assistance with activities of daily living, ranging from grocery shopping,
housekeeping, and transportation to basic needs such as assistance with bathing,
toileting, and feeding (Turner & Pearlin, 1988). As the disease progresses, the
primary caregiver is also likely to take on responsibility for keeping track of
medications, administering injections, inserting catheters for infusion, and
cleansing wounds. The caregiver is also often depended upon by the person with
AIDS to interact with the formal health care system, the insurance system, and the
legal system (Folkman, et al., 1994). Persons with AIDS also require a range of
emotional support: sometimes those needs are explicit, and, at other times, the
caregiver may offer support without being asked (Pearlin & Schooler, 1998).
Thus, meeting the needs of practical and emotional support is demanding for
informal AIDS caregivers.
Social Context o f AIDS
While examining informal AIDS caregiving, one needs to consider the
support given by the caregiver, the context of the community, and the social
context of the AIDS epidemic. Land (1996) has outlined unique elements of
AIDS caregiving that are embedded in the social construction of AIDS. First, it is
essential to remember that diseases are socially constructed entities (Brant, 1985;
Cowie, 1976; Mechanic, 1978; Rosenberg, 1988; Schneider & Conrad, 1983).
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These constructs form societal, professional, and personal reactions to the illness
that in turn impact those who have contracted AIDS as well as who provide care
(Gilman, 1988; McKinlay, Skinner, Riley, & Zablotsky, 1989). Because AIDS is
a socially constructed illness, PWAs and AIDS caregivers react to it in divergent
ways. Hence, AIDS caregivers and PWAs suffer from a stigma that is embedded
in the perception of the illness.
Second, in order to understand the stigma often associated with AIDS
caregiving, one must examine the attitudes and perceptions held about those most
affected by AIDS: gay and bisexual men, injection drug users, poverty-ridden
women, and members of ethnic and racial minority groups (Land, 1996). People
in these populations are exposed to a constellation of prejudices from
homophobia, sexism, and racism to a Protestant work ethic that looks upon the
poor as morally unfit, if not genetically inferior (Land, 1996). Consequently, these
entrenched societal attitudes maintained about people with AIDS also affect those
who care for them.
Third, reactions to the AIDS crisis offers a good example of Ryan’s (
1976) well-conceived process known as “blaming the victim.” In the case of
AIDS, the afflicted population is blamed for causing the disease (Land, 1996). In
the initial years of the crises the virus was often referred to as the Gay Immune
Deficiency, because gay men made up most of the infected population. Similarly
now that the spread of AIDS is disproportionately higher among injection drug
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users, women, and minorities of color, the fears, prejudices and discrimination felt
by gay men has expanded to these other groups. Fourth, and most significantly for
this study, Land (1996) concludes that such unwarranted stigma and
discrimination have the potential to create profound psychological stress for AIDS
caregivers.
Prevalence of Caregivers
The present study is primarily concerned with the potentially adverse
impact of caregiving on the mental health of three groups of caregivers: gay
partners, Anglo women, and Latinas. Turner, Catania, and Gagnon (1994)
provide prevalence estimates of caregiver characteristics from national and
central-city probability samples. These researchers found that large numbers of
people in the United States have taken care of a friend, relative, or a partner/lover
with AIDS. For example, 3% nationally report having provided AIDS caregiving
and, in central cities, about 6%.
In the United States where gay men account for approximately 60 % of
AIDS cases, gay men play a significant role in the care of persons with AIDS
(Center for Disease Control, 1996). A survey conducted in 1992 and 1994 found
in a central city sample that 54% of all gay and bisexual men had provided care to
a lover, friend, or relative with HIV/AIDS (Turner, Catania & Gagnon, 1994),
with the largest number of cases (30% and 40% ) representing gay men in
committed relationships (Barrett, 1993; Harry and Devall; 1978). Thus, research
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suggest that the primary caregivers of men with AIDS are most likely to be their
partners ( Lennon et al.,1990; McCann and Wadsworth, 1992; Pearlin et al.,
1994; Turner et al., 1994).
Women are also strongly represented among caregivers: nationally,
women make up 50% of caregivers in central cities (Turner, Catania, & Gagnon,
1994). Heterosexual males, in contrast, are less likely to perform personal nursing
or domestic task than are heterosexual women or homosexual/bisexual caregivers.
In these same studies it has been shown that more than 25% of the caregivers are
people of color, with Latinas representing 6.8% nationally and 8.5% in the inner
cities.
Latinas are the fastest growing group infected with AIDS, manifesting a
171 percent increase of new cases from 1992 - 1995 (Fernandez, 1995). Many
times these women also provide care for AIDS-infected children, husbands, and
extended family members (Land and Hudson, 1997). Furthermore, due to strong
cultural expectations, especially among recent immigrants, caring falls on women
(Lockerly, 1991; Mintzer et al., 1992).
Generally, research has failed to address the importance of diversity
among caregivers by ignoring sexual orientation, gender and ethnicity/race. This
study, then, seeks to expand the understanding of the different ways context and
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1 1
characteristics affect caregiving across the heterogeneity that exists in the AIDS
caregiving experience. Ultimately, this may help to design methods of alleviating
stress and its insidious outcomes.
Caregiver Depression
Even though there are limited studies on caregiving to persons with
AIDS, current research suggest that AIDS caregivers also suffer a great deal of
emotional distress as providers of care (Folkman et al, 1994; Walker et al., 1996;
Wardlaw, 1994; Tumer& Catania, 1997; Pearlin et al., 1994; Leblanc et al., 1997;
Pearlin et al., 1988; Pearlin et al., 1997; Pearlin et al., 1994). For example,
researchers indicate that care related stress is positively related to depression
among informal AIDS caregivers (LeBlanc, Aneshensel, & Wright). Mullan and
Anenshel (1993) found that increased difficulty in caregiving circumstances for
AIDS caregivers was related to increased depression. Additionally, there are
markedly higher rates of depressive symptomatology among informal caregivers
generally, mostly among caregivers to the aged
(Wright et al., 1993, for a complete review). There is, then, much to leam about
the depressive impact of caregiving across different populations.
The outcome of the intended stress process model, caregiver psychological
well-being, focuses on depression for several reasons. First, depression has been
shown to be greater among caregivers than the general population (Gallagher et
al., 1989; Tennstedt, Cafferata, & Sullivan, 1992). Second, depression is higher
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among women, who make up a disproportionate percentage of the caregiving
population (McGrath et al., 1990; Pruchino & Potashnik, 1989). Third, and most
importantly to the field of social work, untreated depression may lead to
psychosocial difficulties in such areas as relationships with spouse and friends,
employment and leisure activities, social adjustment, and overall contentment
(Coryell et al., 1995). These psychosocial difficulties and depressive symptoms
can affect the quality of life for both the AIDS caregivers as well as the care
recipient by impacting the continuity and quality of care.
Caregivers confront and array of demanding situations that tax or exceed
their normal adaptive capacities, and thus face a prototypical situation of stress
(Aneshensel, 1992). In fact, AIDS caregivers are in a number of ways unique
from other care providers and suffer emotional distress as a consequence of care-
related stress (Pearlin et al., 1988; Lennon et., 1990; Raveis and Siegal, 1991;
Leblanc et al., 1998). AIDS caregivers have the added stresses of social isolation,
stigma, disenfranchisement, lack o f spiritual support, fear of contagion, multiple
loss, homophobia, illness-related complications, and survivor guilt (Doka, 1989;
Klien and Fletcher, 1986; Rosen, 1989; Dean, Hail, and Martin, 1988). The fact
that previous work demonstrates an association between caregiving and
depressive symptomatology gives us reason to expect that similarities in different
populations of AIDS caregiving will be as evident among these informal
caregivers. Further, given that this relationship appears to be due, at least in part,
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to the stressful nature of caregiving, the level of exposure to various stressors
should be related to the severity of depressive symptomatology. This analysis is
specifically interested in identifying from the literature stressors and mediators
that most strongly influence depressive symptomatology in the three groups of
AIDS caregivers.
Relevance of the Study to Social Work
The significance of this research derives in part from the unique historical
circumstances that currently surround the AIDS epidemic. It has led to obvious
changes in individual attitudes and behavior, in neighborhood composition and
structure, in community political mobilization, and in social institutions (Mullan,
1998). Locating AIDS in the larger historical context may help us not only to
understand AIDS caregiving better, but to develop a more complete understanding
of the specific mechanisms by which historic events shape individual lives (Elder,
George, Shanahan, 1996).
The prevalence of HIV infections and AIDS, both worldwide and in our
society, has already reached an overwhelming magnitude and shows no signs of
abating. On the contrary, infection rates are apparently growing, especially among
those segments of the population that are particularly vulnerable to its various
effects; namely, members of racial and ethnic minority groups with limited
resources (Johnsen and Stryker, 1993). Additionally, AIDS is most prevalent
among young adults; indeed, it may be that in no other period outside of wartime
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14
have the lives of so many parents and same-age peers been involved in providing
care for young people facing death (LeBlanc, 1998). And, in what may be the
only instance of its kind, large numbers o f people have committed themselves to
the long-term and difficult care of others who are unrelated to them by traditional
family ties ( Bennet et al., 1991; Fortgang & Moore, 1995; Hellinger, 1993;
Rietmeij'er et al., 1993).
This research examines the multiple demands and multiple complexities of
AIDS caregiving by using the ecological and systems perspective, which includes
the focus on biological, psychological, social and cultural forces at the core of
social work practice and the profession’s dedication to vulnerable clients.
It is in the best interest of social work, with its focus on the whole person
in their environment, to understand the different factors of depression affecting
informal AIDS caregiving, an endeavor that will assist the profession in
providing appropriate services for these caregivers.
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Chapter 2
Literature Review
Conceptual Overview: Stress and Coping Model of Caregiving
Knowledge of caregiving distress has come from literature on stress
research ( e.g., Folkman, Lazarus, Pimley, & Novacek, 1987; Lazarus & Folkman,
1984a, 1984b; Pearlin & Schooler, 1979). This literature on older adults
demonstrates some agreement with the major components which encompass
multivariate theoretical models of caregiver stress and coping (Lawton, Moss,
Kleban, Glicksman , Rovine, 1991; Pearlin, Mullan, Semple, & Skaff, 1990;
Poulshock & Deimling, 1984; Schulz, Tompkins, & Rau, 1988; Zarit, 1994).
The conceptualization of the stress process model in general, and of
primary and secondary stressors in particular, was developed from a study of
family caregivers to relatives with Alzheimer’s Disease (Pearlin, Mullan, Semple,
and Skaff, 1990). This multi-year panel study tracked caregivers across a 5-year
span, during which time they were interviewed on six annual occasions. Long
term caregiving in the community and its attendant demands clearly revealed how
primary stressors, for example those anchored in caregiving activities, beget
secondary ones, such as increased financial concerns, cross-pressures at the
juncture between caregiving and outside employment, economic strains, and the
erosion of previously held self-concepts in other areas o f the caregivers’ lives
(Semple, 1992; Skaff and Pearlin, 1992; Pearlin; 1993).
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The conceptual underpinnings of this stress process model are found in the
work of Pearlin and his colleagues (Pearlin et al., 1990; Skaff, Pearlin & Mullan,
1996; Pearlin et al., 1997). This stress process model contains five components,
the first two of which are the primary and secondary stressors. Primary stressors
are conditions of potential hardship that flow directly from the needs of the PWA
and demands of care. Among them are the numerous household and managerial
tasks, as well as chores that involve the personal care of the PWA. These include
objective and subjective experiences. The primary objective stressors reflect
objectively the nature of the caregiving situation, for example the cognitive status
of the PWA, problematic behavior, assistance with activities of daily living
(ADLs), time spent caregiving for PWA and PWA depression. The other primary
stressors are subjective experiences that exist within the caregiver role itself, and
may include factors such as role overload, relationship deprivation, along with the
loss of intimacy and a lost sense of self. Pearlin explains that subjective primary
stressors are “based not on what caregivers do for the care recipient but how they
experience what they do.” (p. 229, Pearlin et al., 1977).
The second component of this model are the secondary stressors. These
problems represent secondary strains, or more indirect products of caregiving. It
was found that caregiving demands create or exacerbate problems in other areas
of the caregiver’s life. For example, caregiving demands can lead to such
consequences as feeling trapped in the caregiving role (role captivity), financial
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strain, work strains, problems with the caregiver’s occupation, conflict with
family and friends, and the attenuation of valued social and leisure activities.
Secondary stressors, in contrast, are problems that arise as a consequence of
providing care, but do not directly involve the task of caregiving. These
conditions arise beyond the boundaries of the caregiving role., e.g., problems
encountered at work due to the demands of caregiving. Secondary stressors as
well as subjective primary stressors overlap to some degree with recent
conceptualizations of the caregiver burden, a global concept that does not
differentiate between the distinctive sources of caregiver stress (Folkman et al.,
1994; Clair et al., 1995). In addition, secondary stressors are seen as being
generated or exacerbated by the primary demands of caregiving, a process Pearlin
identifies as stress proliferation. (See Aneshensel et al., (1995) for an application
of stress proliferation framework to a study of Alzheimer’s caregivers.)
The third component, mediating variables, is composed of the social,
personal, and material resources that help modify or regulate the causal
relationship between stressors and outcomes (Aneshensel et al., 1995). In stress
research, it has been demonstrated that people exposed to equivalent stressors are
affected by them in different ways (Yates et al., 1999); some may be adversely
effected, others not at all. The explanation for these variations may reside in what
are called mediators. Mediators include personal and social resources (Lawton et
al., 1989; Lazarus, 1966; Lazarus, 1993), differing levels of material or financial
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18
resources (Archbold, 1983), locus of control (Miller et al., 1995), and the access
to formal services (Bass, Noelker, & Rechin, 1996). The mediators function by
altering the magnitude of associations between stressors and outcomes (Pearlin et
al., 1997). Investigators of stress research suggest that the mediator transforms the
basic stressor-outcome relationship, intensifying the impact o f stress when
resources are scarce and diminishing it when resources are plentiful. Mediators
may include self esteem, mastery, service utilization, coping, community
integration, and emotional support.
The fourth component are the background and contextual factors which
represent attributes that potentially affects each of the other components of the
stress process; the primary and secondary stressors to which people are exposed
and the outcomes they exhibit (Pearlin et al., 1997). Background characteristics
include attributes such as age, income, education, occupation, gender, ethnicity,
and household composition, which can all have a major influence on every aspect
of the stress model. As Pearlin et al. (1990) suggest, the affect o f ascribed and
achieved statuses such as ethnicity, age, gender, and socioeconomic status are
likely to be “threaded throughout the distress process” (p.36). Thus, they can
regulate the stressors to which people are exposed; they underlie the personal,
social, and psychological resources that help to manage the effects o f the
stressors; and they channel the ways in which stressful effects are manifested
(Pearlin et al, 1990).
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19
The fifth and final component in Pearlin’s model of the stress process
refers to the outcomes which are the consequences of stressors. The possible
outcomes of this stress process include depression, guilt, anger, anxiety, physical
health, and withdrawal. Outcomes reflect the various effects of the stressors
interacting with the mediators. This study is primarily concerned with
investigating how the depression of caregivers is affected and meditated by the
stresses of caregiving.
Figure 1. Conceptual Model for AIDS Caregivers.
In summary, this study’s conception of Pearlin’s (1997) stress process is
illustrated in Figure 2. The conceptual model for this analysis only uses part of
Pearlin’s stress process paradigm. This stress model depicts caregiver stress as a
process that is composed of a number of interrelated conditions, including the
socioeconomic characteristics and resources of caregivers; and the primary and
secondary stressors to which they are exposed (Pearlin et al.,1990). Primary
stressors are hardships and problems anchored directly in caregiving, especially
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20
ADLs and role overload. Secondary stressors, such as financial concern and role
captivity result from the primary stressors and arise as more indirect products of
caregiving. Mediators such as mastery and emotional support function as a third
variable, which represents the generative mechanism through which the focal
independent variables are able to influence the dependent variable of interest
(Baron and Kenny, 1986).
The Stress Process Affects People Differently
The different effects of AIDS caregiving on the individual can be
appropriately assessed within the conceptual framework of the stress process
(Pearlin et al., 1981; Pearlin et al., 1990). As it is conceived, the stress process is
made up of multiple components: background characteristics, primary and
secondary stressors, outcomes, and moderating conditions. These components are
closely interrelated such that changes in any one of them may result in changes in
others. Pearlin’s stress process paradigm essentially treats stress as a dynamic
process that unfolds over time. AIDS caregivers confront and endure intense
caregiving demands, as well as a pileup o f stressors in other areas of their lives
(Pearlin etal., 1990).
Being an AIDS caregiver does not, however, automatically catapult one
into a state of extreme stress. Studies typically reveal that people caught up in
difficult circumstances do not necessarily go through the same stress process.
With regard to AIDS caregiving, these variability's may be because caregivers are
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21
exposed to differing constellations of primary and secondary stress; where some
caregivers are unable to mobilize the same personal, social, and coping resources
others can. In this way, caregivers may manifest their stress differently (e.g.,
depression, drinking, withdrawal from the role, etc.). These kinds of variations,
moreover, might occur within differences in the structure of the caregiver-PWA
relationship; that is, those who are related by traditional family ties and those who
are not. Each group brings to the caregiving role different lifestyles and associated
health risks. As a result, we can expect that comparative analyses will reveal that
family and non-family caregivers experience the stress process in somewhat
different ways (Crystal, 1991; Rait, 1991).
At the same time, it is recognized that there is considerable variation
within these different categories of caregivers, and that intra-group differences
may be of a magnitude similar to that of the inter-group differences. It is known,
for example, that among family caregivers to impaired older relatives, the range of
caregiving responsibilities that relatives are willing to assume is greatest among
spouses, less among adult children and least among siblings (Shnas, 1979;
Johnson and Catalona, 1983). A parallel order of differences has been found with
non-family AIDS caregivers (Pealin et al., 1994). Here, lovers and partners are
under the greatest demand, followed by friends, and then by acquaintances such as
fellow workers and neighbors. The significant issue underlying such differences is
that the stressors involved in caregiving are not necessarily distributed equally
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22
among everyone engaged in caregiving. This research study is an opportunity to
examine variations among these groups that will help to reveal paths of exposure
to stressors and their psychological consequences of depression.
AIDS Related Caregiving and Stress
Caring for a partner with AIDS is demanding (Adelmen, 1981, Folkman et
al., 1994a; Ravies and Siegal, 1991; Siegal and Kraus, 1991), and most of the care
required to attend to opportunistic infections and diseases that signify the advance
of AIDS is managed at home with the help of a primary caregiver (Folkman,
1997). Informal AIDS caregivers are frequently on call 24 hours a day.
Exploratory studies on the stress of AIDS caregiving offer elements
unique to the relationship between persons with AIDS and their caregivers
(Clipp, 1995). From intensive interviews with gay men providing in-home care to
their partners, Pearlin and colleagues (1988) identified three types of stressors: (a)
demands associated with housekeeping, nursing care and management of financial
affairs; (b) uncertainties concerning their own futures in terms of contracting the
disease; and (c) disruption in occupational, economic, and social roles. In another
study, Ravies and Siegal (1990) discovered that informal caregivers who were
traditional family caregivers of relatively healthy persons with AIDS provide the
majority of total assistance required for instrumental activities, transportation, and
home medical care. In a third exploratory study of traditional family caregivers,
Brown and Powell-Cope (1991) found the basic psychosocial problem of
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23
uncertainty with areas such as managing the illness, living with loss and dying,
renegotiating the relationship, going public with the illness, and containing the
spread of HIV. Finally, from narrative accounts provided by 100 partners of men
with AIDS, Wrubel and Folkman (1997) identified five types of caregiving skills
that include the provision of emotional support, hands-on care, clinical care, high
tech nursing, and health care advocacy.
Many AIDS caregivers have never taken care of a seriously ill person
before, and many will lose close friends and partners before they experience the
death of a parent or even a grandparent (Wardlaw, 1994). Parents who are
caregivers find themselves in the unimaginable position of preparing for the loss
of a child whom they expected to outlive them. Studies on life transitions suggest
that events occurring “out of sequence” create greater distress than those that
succeed the expected life course (Milrowsky & Ross, 1989; Rait, 1991). Untimely
death, then, has significant effects on those who survive, often leading to intense
and protracted grief (Lopata, 1979; Martin and Dean, 1993).
Informal AIDS caregivers also have the stress of dealing with a
communicable disease. This introduces an element of risk not present when
providing informal care to persons with other chronic conditions. Research
indicates that many health care professionals are fearful of acquiring HIV in the
course of their work (Blumenfield, Smith, Milazzo, Seropion, and Wormer, 1987;
Silverman, 1993; Rizzo, Marder, and Wilkie, 1990).
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24
Hence, it would seem likely that these fears would also reside among informal
caregivers who care for all aspects of the person with AIDS.
Moreover, informal AIDS caregiving is often provided by persons who are
infected themselves (Folkman, 1997; Wardlaw, 1994; Land and Hudson, 1998).
Literature shows that caregivers who are HIV positive have an extra burden due to
their own health status (Folkman et al., 1994; Turner and Pearlin, 1989; Turner et
al., 1994; Pearlin et al., 1989) Close contact with the consequences of HIV
infection may increase the stress in persons who are dealing with their own life
threatening illness (Wardlaw, 1994). These caregivers are often concerns about
who will care for them when they become ill, and may intensify their stress and
fears regarding the future. Additionally, HIV positive caregivers may find their
ability to provide care hindered by fatigue and opportunistic infections.
Gender stereotyping also plays a role in the stress process. Research
indicates that women assume the role of caregiving more frequently than men,
while simultaneously providing basic care for other family members (McBride,
1998; Brody & Shooven, 1986; Horowitz, 1985; Hauser & Berkman, 1985).
Unfortunately, since care in the United States is typically viewed as a female role,
there are not adequate role models for gay male caregivers (Folkman et al., 1994).
In Latin cultures, caregiving falls predominately on women because of strong
cultural expectations for them to assume caregiving roles. This social norm is
especially true for the more recently immigrated (Metizer et al., 1992; Lockerly,
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25
1991). Thus, these three groups of informal AIDS caregivers, Anglo gay partners,
Anglo women, and Latinas are affected by gender stereotypes, all of which may
add additional stress.
Stress and coping models posit that combinations of stressors and the
availability of resources influence an individual’s reaction to stress (e.g.., Lawton
et al., 1989; Pearlin et al., 1990; Horowitz, 1985; Light and Lebowitz, 1989,
Schulz, Visintainer, and Williamson, 1990; Land, 1996). Though most caregivers
endure great stress, there is tremendous variability in the feeling of burden and
depressive symptomatology (Clair, Fitzpatrick, and Gory, 1995). Why do some
AIDS caregivers fare better than others? Because informal AIDS caregiving
involves a combination of circumstances, experiences, and resources that vary
from one caregiver to the next; moreover the reason for caregiving and the
appraisal of the caregiver experience vary as well (Clair, Fitzpatrick, and Gory,
1995). Outcomes, therefore can be quite different from one relationship to the
next.
Careeiver-Care Recipient Relationship
As documented earlier, research on AIDS caregivers presents an unusually
heterogeneous group. AIDS caregivers are first distinguished according to
whether they are joined by traditional family ties or by other bonds (Tuner,
Pearlin, and Mullan, 1998). Although the AIDS caregivers who are not related by
blood or traditional marriage, particularly those identifying themselves as
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partners/lovers, sustain a close functional resemblance to family caregivers; they
represent a different institutional context. AIDS has created a community of
unrelated individuals, built upon traditional family norms and nontraditional
social relationships (Turner, Pearlin, & Mullan, 1998). These kinship ties in the
gay community remain highly institutionalized, with well-established norms and
expectations. Arguably, the differences between these caregiving relationships
may have implications for the factors that contribute to depression. Since family
and partner caregivers are integrated and related in different ways to society and
institutions, they are prone to have different social histories, different experiences
with the AIDS epidemic, and may, therefore, have different causes of depression.
Exploring the difference within and among these relationships can add to
understanding the three groups of caregivers in this analysis.
In addition to the distinction between traditional family and partner,
gender and sexual orientation are distinguishing characteristics among caregivers.
For example, some studies indicate that women report receiving more support
than do men (Burda, Vaux, and Schill 1984; Butler, Giordano, and Neren, 1985),
and may be particularly advantaged by receiving emotional support (Burda et al,
1984; Stokes and Wilson 1984; Turner 1994). While very little research has
focused on gay men, there is some suggestion that their patterns of support may
be consideraly different than those found in the heterosexual population (Kurdek
and Schmitt, 1987).
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27
Gav Male Partner AIDS Caregivers
As was mentioned earlier, gay men in central cities in the United States
will continue to play a significant role in the care of persons with AIDS (Turner &
Catania, 1997). The fact that many gay male AIDS caregivers are themselves
often infected with HIV is an important characteristic that distinguishes this group
of caregivers from traditional family caregivers. In addition to the stress of
caregiving, the literature suggests five key dimensions that add to the stress to
informal AIDS caregiving for gay partners (Shelby, 1992; Turner et al., 1995;
Pearlin et al., 1994; Pearlin et al., 1998).
First, AIDS is prevalent in young and middle-aged gay men, which means
that caregivers of partners with AIDS are premature in their caregiving role
compared to older caregivers (Neugartan, 1979). Premature caregiving can add
additional stress over and beyond the stress associated directly with caregiving
(Folkman et al., 1994).
Second, in the past caregiving fell into the hands of adult children, wives,
husbands, and parents who typically depended on family members for support.
Gay men with HIV/AIDS and their gay partners, who are also caregivers, are
often physically and emotionally distant from families. Tensions between the men
and their families over the latter’s misunderstandings of gay mens’ life styles are
common (Folkman et al., 1994). In addition, the stigmatizing nature of AIDS and
fear of contagion hinders much needed support from families (Ravis & Siegal,
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28
1991; Hereck, 1990). It follows that gay men are more likely to turn to partners
and friends who share their experiences, rather than to their families, for
emotional support.
Third, in contrast to the relationship constituting spousal or adult child
caregivers to their recipients, which are legally acknowledged and strongly
supported by society, the relationships of gay men with partners are nontraditional
and often stigmatized by society as a whole (Hereck, 1990). Fourth, as noted
above, caregiving in United States is typically viewed as part of the female role;
therefore, gay male caregivers have few role models.
Fifth, the vulnerability of the gay partner to either the threat of becoming
infected or their own disease progression creates additional stress (Turner et al.,
1994). It has been demonstrated in the literature that men who are HIV-positive
are at higher risk for depressive symptomatology( Markowitz et al., 1998; Katz et
al., 1996; Siegal et al., 1997; Rabkin et al., 1997; Chesney & Folkman, 1994;
Folkman et al, 1994). The AIDS caregiver literature shows that caregivers who
are HIV positive have the extra burden of being HIV positive themselves
(Folkman et al., 1994; Turner and Pearlin, 1989; Turner et al., 1994; Pearlin et al.,
1989). Furthermore, these men are psychologically vulnerable to the extent that
they see the progression of their partners’ disease as a forecast of their own future.
(Folkman et al., 1994; LeBlanc et al., 1997).
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29
As gay caregivers experience multiple deaths in both their personal and
professional lives; indeed, an epidemic of grief is reaching crisis proportions;
survivors are generally grieving for more than one loved one (Bigelow and
Hollinger, 1996). Indeed, Bigelow and Hollinger (1996) outline how gay
caregivers may be grieving on multiple levels: (a) grieving the loss of their health,
and financial sercurity; (b) grieving a lover and daily support; (c) grieving the
death of many close friends whom one has kown for years as well as all their
shared memories; (d) grieving the fact that family choice is radically altered,
perhaps vanished; (e) grieving because one’s world has changed, due to the loss of
large numbers of acquaintances and coworker who have died; (0 grieving the loss
of culture, community identity and a hope for a future. This research points out
that this kind of complicated grief resembles the experience of older adults; that
is, gay men in their early and mid-life are forced to deal with difficult tasks that
most people don’t confront until their 70’s and 80’s. Thus gay caregivers are
suffer many losses and support networks may be drastically reduced (Hart et al.,
1990; Martin, 1988; Sherr, 1993).
Female AIDS Caregivers
Female caregivers are more likely to use a variety of coping strategies that
effectively mobilize social support systems, even though women often report
higher levels of stress, role strain, and physical and depressive symptomatology
than their male counterparts (Dew and Bromet, 1991). Furthermore, women
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30
represent a 139% increase of the newly diagnosed cases of AIDS (Fernandez,
1995), and many o f them are providing care for others. Because o f these
conditions, female AIDS caregivers are at considerable risk for stress and threats
to physical and mental well-being, particularly depression (Thoits, 1991). Thus,
there is a need to examine the unique causes of stress unique to their situations,
and the role it plays in the outcome of depression is considerable.
Research documents a phenomenon known as role strain perspective,
which emphasizes the emotional cost rather than the benefits of multiple roles
(Coster and Rokoff, 1971; Goode, 1960). This viewpoint stresses that there is a
fixed quantity of time, energy, and commitment available for role-related
responsibilities (Moen, Robison, Dempster-McClain, 1995). Despite the
increasing number of women entering the labor force, women are still expected to
fulfill their responsibilities at home (Moes, 1992). Hence the family role of
caregiving is taken on in addition to ongoing family and non family obligations,
producing the very real possibility of overload and strain, and, consequently,
psychological distress (Moen et al., 1995). For example, research suggests that
women’s responsibility for the welfare o f children, husbands, and ailing relatives
may have detrimental consequences for their own well-being (Gove and Hughes,
1979; Veroff, Douvan, and Kulka, 1981). Moreover, females caring for older
adults suffer worse mental health outcomes than male caregivers (Gilhooly, 1984;
Tennestedt, Cafferata, and Sullivan, 1992).
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31
Wife caregivers, in particular, are more likely to manifest poor physical
health and depression (Gallagher, Rose, Rivera, Lovettt, & Thompson, 1989;
Robinson, 1989; Zarit & Toseland, 1989); in fact, they appear to be a high risk
group for depression and physical problems (Bames, Given, and Given, 1992;
Cantor, 1983). They are likely to experience more financial distress, physical and
emotional strain, and to receive less assistance with caregiving tasks from other
types of caregivers (Bames et al., 1992; Hoyert and Seltzer, 1992; Kramer, 1993).
Furthermore, for spouses who provide care, negative outcomes may also be
exacerbated by problems associated with age, such as poor health and fewer social
ties (Canter, 1993).
To date, most research on family support networks of persons with AIDS
has focused exclusively on gay men (Smith and Raptin, 1996). In a review of the
literature Bor et al. (1993) and Bor & Elford (1994) summarized the small body of
research that exists on the impact of HIV disease on the traditional family. They
found that illness and death from HIV and AIDS has a profound effect on all
aspects of the family, and there is an increased risk for psychological problems.
Many of these women are providing care for others with AIDS in addition to
caring for other family members. Traditional family AIDS caregivers’ perceptions
and judgments include the caregiver’s perceived self-efficacy, strength of familial
obligations and affection, fear of stigmatization and perceived adequacy of social
support (McDonell, Abell and Miller, 1994). Female AIDS caregivers are at
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32
considerable risk for stress and threats to physical and mental well-being,
particularly depression (Throits, 1986; 1991; Mullan, 1998 ). Thus, it is important
to examine the causes of depression and the role it plays attendant to these issues.
This knowledge will aid in the development of services designed for female AIDS
caregivers and their specific needs.
Latina AIDS Caregivers
A disproportionate impact of the epidemic among ethnic minorities is
reflected by the rate of reported AIDS cases that are three times higher for Latinos
than for whites. In Los Angeles, for example, Latinos comprise 33% of all AIDS
cases according to a study form the Center for Disease Control (1997), that has
also shown consistent increase in reported AIDS cases among Latinos. The
proportion of Latinos infected with HIV increased from 25% to 38% between
1987 and 1995, with Latinas comprising the fastest growing group of those
infected: a 171% increase of the new cases between the years 1992-1995
(Fernandez, 1995). And like gay men and Anglo women, a significant number of
these infected Latinas also care for someone who is ill.
There are however, only a few studies on Latina caregivers with older
adults and even fewer on Latina AIDS caregivers (Henderson and Gutierrez-
Maya, 1992; Mintzer et al., 1992; Sanchez, 1986). But as Aranda and Knight
(1997) have shown in a review of the literature on older Latino caregivers and the
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33
stress and coping processes, studies have been exploratory and based on relatively
small, cross-sectional convenience samples; therefore, compromising the degree
of generalizability.
Some generalizations are, however, possible. The lack of funding for and
availability of culturally sensitive services, coupled with the Latino community’s
reluctance to seek help outside of the their family, has resulted in the increased
likelihood that frail elderly Latinos look to their family for care (Valle, 1981).
Further, Purdy and Arguello (1992) have argued that under-utilization of formal
services by Latino families increases dependency on adult children, thereby
perpetuating a cycle of poverty and depression as caregiving spouses or adult
children leave their jobs or reduce their number of working hours in order to
provide care for an ailing relative.
Latino women, in general, must deal with multiple obstacles related to
their age, ethnicity, gender, language differences, and their frequently low
economic status (Polcih and Gallagher-Thompson, 1997). They are rarely
connected to formal support services, due either to the lack of culturally sensitive
services, cultural barriers to receiving assistance, or fear of stigma related to the
relative’s illness (Sotomayor and Randolph, 1988; Valle, 1988). In addition, as
Gallegos (1991) has pointed out, the traditional Latino family is burdened due to
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34
increased urbanization, financial pressures, and in some cases, possible stresses
related to immigration. In reviewing these multiple risk factors, it seems evident
that female Latino caregivers are at high risk for psychological distress.
It is not unusual for these women to provide care to AIDS infected
children, husbands and other extended family members (Land and Hudson, 1997).
Land and Hudson (1997) outlined six factors that put Latina caregivers at
significant risk for health problems and psychological risk for depressive
symptomatology. First, they are often coping with the stress of acculturation.
Second, they are isolated because o f the stigma of AIDS. Third, they are often not
knowledgeable about HIV/AIDS and AIDS services. Fourth, the Latino cultural
value of sympatia may delay Latina AIDS caregivers from seeking assistance
from outside sources. A simpatia person, usually Latinas, attends to the needs of
others before herself (Martin, 1990). Unlike the other two groups, Latina AIDS
caregivers constitute the backbone o f family attendant care (Land & Hudson,
1997). Fifth, many Latina AIDS caregivers reside in poverty ridden communities,
where the availability of medical, mental health, and social services are limited for
monolingual Spanish speaking people (Munoz et al., 1982). Exacerbating this
problem is the fact that many Latina caregivers are undocumented, which means
that they frequently fail to qualify for health, mental health, child care and other
social services (Dennenberg, 1992, Land, 1994). Studies with non-caregiver
Latino women have found health status and socioeconomic status (SES) to be
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35
closely linked to depression. Moreover, researchers have emphasized the
importance of considering the impact of health and economic status whenever
psychological well-being is investigated in this population (Polich and Gallagher-
Thompson, 1997). And sixth, help seeking behavior in Latino populations differs
dramatically from other groups; for example, outside resources such as respite
care is frequently viewed as unnecessary by Latino families (Cox & Monk, 1993;
Hu and Snowden, 1992; Keefe, Padilla & Carlos, 1979, Martinez, 1978; Starret,
Mindel & Midel, 1983).
Thus, Latinas are often hesitant to seek help or care for their own illnesses
for fear of burdening their families, and to avoid stigmatizing the family (Salcido,
1996). As a consequence, the needs o f many Latina AIDS caregivers who have
HIV or AIDS are often identified late in the course of their illness (Land and
Hudson, 1997). AIDS caregivers who are HIV - positive may have accelerated
disease manifestations because they neglect their own health while attending to
others who need more extensive care (Medrano and Cuvilly Klopner, 1992).
These circumstances that evolve are due to substantial misinformation concerning
AIDS and a strong tendency to underestimate personal risk (Kalichman, Hunter &
Kelly, 1992, Marin, 1989). Additionally, many Latina AIDS caregivers are at risk
of contracting HIV because of sociocultural and religious sanctioning against the
use of condoms (Rosen & Blank, 1992).
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36
Research indicates that, among some ethic minorities such as Latinos,
parents may experience aggravated distress despite their strong caregiving
commitment (Land, 1992). For example, the community allows them little
support for AIDS caregiving and their children are discredited and discarded from
the community for engaging in high risk behaviors (Levine, 1990; Morales,
1990).
A number of studies have demonstrated increased levels of psychological
distress and depression in Latinas generally (Kemp, Staples, and Lopez-Aqueres,
1987; Land, 1994; Gibson, 1983; Moscicki, Locke, Rae, and Boyd, 1989; Vega,
Kolody, Valle, Hough, 1986). And, therefore, Latina AIDS caregivers constitute a
growing, vulnerable group at risk for not only physical manifestations of AIDS,
but for stress, and depressive symptomatology (Land & Hudson, 1997)
Additional stress among Latina AIDS caregivers may be due to changes to
household composition, psychological distance, and the cultural value of
familism. Changes are occurring in household composition among Latinos and
non-Latinos alike (Polich and Gallagher-Thompson, 1997). For example, female
headed households are becoming more common (23% of Latinos households
versus 15% of non-Latino households), and the number of Latino women
employed outside the home is also on the rise (Garcia, 1991). As a result, adult
daughters may not be able to assume the role of the caregiver, or, if they do
assume this role, their burden and strain will increase considerably (Polich and
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37
Gallagher-Thompson, 1997). Psychological distance may be caused by
geographical distance as well as from the fact that the generations of Latino
families acculturate at different rates and to varying degrees (Szapaocznik et al.,
1978).
The Latino cultural value offamilism may also deter Latina AIDS
caregivers from seeking formal support services and cause more stress for the
caregivers. Familism has been used to embody the structural phenomena of shared
household, as well as a cultural pattern of condition (Wallace and Facia, 1987).
Reports of familism caregiving are abundantly evident in literature on Latinos
(Purdy and Agrulla, 1992). Many others have conceptualized “familism” as an
important component with in Latino families (Baca & Zinn, 1982; Wallace &
Facio; Sena-River, 1979). Because it emphasizes a reliance solely upon informal
familial support that increases dependency, which has been correlated with
depression (Purdy and Agrullo, 1992). These authors argue that the role of
familism and the current under utilization of formal services are detrimental to
psychological well-being. Reliance also perpetuates a cycle of poverty as women
and children’s economic opportunities are sacrificed due to caregiving.
Only recently have more programs and services been developed to reach
Latin women, but many of them mirror programs oriented toward gay men (Land
and Hudson, 1997). Consequently, a low rate of participation in such programs is
common and problematic (Weeks, 1995). Although, programmatic literature
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38
repeatedly emphasizes the need to attend to women’s personal issues by
addressing gender, culture, and class, rather than providing a template approach to
AIDS services (Weeks, 1995). There is a significant lack of information to help
understand the needs and stress levels of Latina caregivers and their psychological
and physical well being (Land and Hudson, 1997).
Differences in the Three Groups of AIDS Caregivers: Anglo Gav Men. Anglo
women, and Latinas
It is obvious from the examination of the three AIDS caregiver groups
that there are many differences unique to each of them. These differences include
gender, sexual orientation, racial, social, cultural, and economic status, levels of
support from family and community, and the availability of health and AIDS
services. Studies typically reveal that people caught up in difficult circumstances
do not necessarily go through the same stress process (Crystal, 1991; Rait, 1991)
and that people react differently to the role of AIDS caregiving. These studies
reveal variations in the range of caregiving responsibilities people are willing to
assume with spouses assuming the greatest, less among adult children and least
among siblings. Futhermore, response differences arise because caregivers are
exposed to varying constellations of stress and strain, they differentially mobilize
personal, social, economic and coping resources (Land & Hudson, 1997; Pearlin
et al., 1991). Consequently, social work services must be designed with variability
for each of these groups of informal AIDS caregivers.
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39
Study Variables
Pearlin’s et al., (1990) stress process model offers a framework with which
to investigate the unique stress processes of these three groups. This study has
chosen variables from Pearlin’s model that have empirical and theoretical support
for predicting depression in AIDS caregivers. The variables include: (1)
background factors (income, age and self reported health); (2) primary objective
stressors (assisted daily activities); (3) primary subjective stressors (role
overload); (4) secondary stressors (financial worry and role captivity) and (5)
moderators (mastery and emotional support).
Background Factors
Income. Income has been found to be a consistent and significant predictor
of depression. Researchers reviewing 41 articles on dementia caregiving found
socioeconomic status to be consistently related to depression (Schulz, O’Brian,
Bookwala, and Fleisser, 1995). Income was significant in predicting caregivers’
burden in a probability sample of 260 informal AIDS caregivers ( Turner &
Catania, 1977).
Research on non caregiving Latino women has found that socioeconomic
status to be closely linked to depression (Polic and Gallagher-Thompson, 1997).
Consequently, researchers have emphasized the importance of considering the
impact of health and economic status whenever psychological well-being is
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40
investigated in this population (Polich and Gallagher-Thompson, 1997). Turner
and Catania (1997) analyzed a probability sample of informal AIDS caregivers
and found that lower income was a predictor of increased caregiver burden.
Furthermore, Purdy and Agrulla (1992) found that Latino caregivers from
low-income households do not have the time, money, knowledge, or training to
adequately provide services. In turn, less economically distressed people have
more time, money and resources to cover expenses and seek support services,
than do people experiencing economic hardship (Dooley & Catalano, 1980).
Age. Age has generally been found to be positively related to depression
in caregivers of older adults (Kessler et al., 1992; Mirowsky and Ross, 1989).
Additionally, age has been found to be an important sociodemographic
characteristic of AIDS caregivers. Caregivers at a young age may be at particular
risk for detrimental consequences (Tuner et al., 1994; Turner and Pearlin, 1989;
Pearlin et al.,1998). As noted earlier, it is also believed that the ages of gay
caregivers and people with AIDS have a special bearing on the stress of
caregiving (Pearlin and Temple, 1989).
The process of aging involves a series of role transitions that are expected
to follow a socially defined “timetable.” These transitions are relatively stress
free; however, transitions that are out of sync with their life course are particularly
traumatic. For example, acquiring the role as caregiver and experiencing the
deaths of one’s social network are most common and generally expected to be
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41
characteristic of the aging process in older adults. For young adults, however,
caregiving and death of same-age peers is more likely to be “off time” and
without anticipatory preparation (Pearlin et al.,1990). In studying caregivers who
are daughters, age was found to be a predictor of depressive symptoms. This
finding is consistent with past research on caregiving (Greenburg, Seltzer, and
Greenley, 1993; Young and Kahana, 1989) and is reflective of the stress produced
by the transitions that don’t follow expected progression.
Self reported health. Caregiver health has been found to be a significant
predictor in depressive symptomatology and stress. In a review of 41 dementia
caregiving manuscripts, Schulz and colleagues (1995) found that a common
assessment of physical health status was arrived at by asking a single question
(measured with a single item) that rated their current health on a scale from poor
to excellent. They found that caregiver health status was strongly associated with
psychological morbidity across many studies. Li and colleagues (1977)
corroborating Schulz’s study, found that health status of the caregiver was a
predictor of depressive symptoms for both wives and daughters.
Furthermore, there is good evidence that poor physical health is a risk
factor for depression (Berkman et al., 1986; Hayes and Ross, 1986). In caregivers
o f older adults recovering from heart attacks, Kahana and colleagues (1992) found
in a longitudinal study that physical health of the caregiver was found to be one of
the few significant predictors of caregiver psychological distress. In addition,
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42
researchers studying older adult caregivers found perceived health status of
caregivers, measured with a single item, to be a consistently strong independent
predictor of depressive symptomatology ( Gurland et al., 1988; Zanetti et al.,
1998; Fritz et al., 1997). Similar studies have found poorer health to be associated
with depression (Brief et al., 1993; Heidrich and Ryff, 1993; Trans, Wright, and
Chatters, 1991).
Just as the health of caregivers is shown to be an important factor
influencing depressive symptoms, so to with caregivers of PWAs (Leblanc et al,
1994; Leblanc, 1997; Folkman et al., 1994). Leblanc et al. (1995) in a longitudinal
analysis with AIDS caregivers, using Pearlin’s (1994) theoretical framework
found that the AIDS caregiver health was an especially important determinant of
depressive symptomatology. As mentioned earlier, many gay men who provide
care to partners with AIDS are themselves infected with HIV. Watching the
PWA’s illness unfold may deplete their psychological resources which help
sustain the caregivers mental health. In addition, HIV infection may also impair
the caregivers health, depleting strength and energy. Thus, many caregivers who
are themselves HIV-positive face great uncertainty about the future, and are put at
a heightened risk for health problems as they go about caregiving (LeBlanc et al.,
1997; Lennon et al., 1990; Siegal and Krass, 1991).
Similarly, health was also found to be an important predictor of depression
among a sample of older Latinas (Polich & Gallagher-Thonpson, 1997).
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43
Research with non caregiving Latina women found health status to be closely
linked with depression (Polich & Gallagher-Thompson, 1997). Additionally,
researchers found the perceived impact of health was significantly related to
depression both in more traditional and more bicultural groups of elderly
caregivers. Other studies of Latino populations have shown that the reporting of
somatic symptoms, which can be an indicator of overall health status, represents
underlying depression (Garcia & Marks, 1989; Kolody, Vega, Meinhardt, &
Benussen, 1986; Magni, Rossi, Rigatti-Luchini, & Mersky, 1992). Aranda and
Knight (1997) in a review of Latino caregivers concluded that the existing
research indicates that Latino caregivers experience significantly poorer health
than their Anglo counterparts, but the data supporting differences in psychological
stress is ambiguous. In terms of Latina AIDS caregiving, Land and Hudson
(1999) found that the most important predictor for physical and mental well
being for HIV - positive and HIV- negative groups of caregivers was the presence
of other chronic illnesses.
Primary Objective Stressors
Activities of Daily Living. Some primary stressors are objective in that
they reflect the nature of the caregiving situation, such as the degree to which the
PWA routinely requires assistance with the activities of daily living (ADLs).
Patients with significant physical and cognitive impairments who rely on the
caregiver to assist in these activities of daily living can pose a potentially
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44
significant daily stressor for the caregiver (Pearlin et al., 1990). As the demands
increase in the exchange, with more patient dependency on the caregiver, then the
sense of caregivers’ burden increases, as does the level of depressive
symptomatology (Clair et al., 1995). Eventually, this skewed relationship
becomes disruptive for caregivers in all spheres of their lives (Litvin, 1992). For
example, researchers found that as assistance with activities of daily living
increase, social activities are interrupted, psychological resources are challenged,
family relations become strained, work careers may be disrupted, financial and
temporal burdens mount, and psychological health may suffer (Gatz et al., 1990;
Schulz et al., 1990; Zarit et al., 1985).
In the AIDS caregiving literature, ADLs have shown to be associated with
depression and physical problems (Pearlin et al., 1988;Pearlin et al., 1994; Pearlin
et al, 1997; LeBlanc et al, 1977;). Similarly, LeBIanc and colleagues (1995), using
Pearlin’s stress process model, found in a multiwave sample of 475 gay male
AIDS caregivers that the primary stressor of ADLs contributed to feelings
overload, which lead to greater symptoms of depression. In a sample of Latina
caregivers for older adults, researchers found that ADLs and caregivers burden
were strongly related to depressive symptomatology (Polich and Gallagher-
Thomson, 1997). This effect illustrates the influence of a primary care-related
demand on caregiving-well being.
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45
Primary Subjective Stressor
Role overload. In the AIDS caregiver literature it has been demonstrated
that role overload (Leblanc et. al., 1995; Pearlin et al, 1997;) are important
indicators of depression. Role overload was defined by Aneshensel et al. (1993) as
relational deprivation involving the loss of intimacy, shared goals and activities,
as well as a sense of self. Others have found that the more difficult caregiving
circumstance for AIDS caregivers, the greater the reported feelings of role
overload and the greater depressive symptoms (Mullen and Aneshensel, 1993).
Pearlin, Aneshel, and LeBlanc (1997) have delineated the concepts of
stress proliferation and contend that stressors have more impact on the caregivers
lives than exclusively at their proximal affects. For example, the PWA’s
functional needs lead to caregiver’s feelings of overload, which may lead to
depression; overload indirectly affects caregivers by impacting other areas of their
lives. The findings indicate that increased caregiving demand lead to feeling role
overload as well as the feelings of being captive in the caregiving role (Pearlin,
Aneshensel, and LeBlanc, 1997). Other researchers have found that perceived
overload was strongly related to increased feelings of role captivity and
depression, even after controlling for other relevant factors, including primary
objective stressors (Lawrence, Tennstedt, and Assmann, 1998). Moreover, they
found that increased levels of overload remained strongly related to increased
levels of role captivity and depression. Thus the primary stressors have affected
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46
people in other areas of their lives, such as the secondary stressors; feeling captive
in the caregiver role and worrying about finances. In turn, each of these secondary
stressors can affect depression.
For women AIDS caregivers, her role in the family as caregiver might
well have a negative effect on her well-being, since her obligations may well
outweigh any positive affects from her multiple roles (Moen, Robinson, and
Dempster-McMclain, 1995). For example, researchers suggest that women’s
responsibility for the welfare of children, husbands, and ailing relatives may have
deleterious consequences for their own well-being (Gove and Huges, 1979;
Veroff, Douvan, and Kulka, 1981). Furthermore, role overload was also found to
be a predictor of mental well being for Latina AIDS caregivers (Land and
Hudson, 1999).
Secondary Subjective Stressors
Financial concern. Financial concern often results as resources are
depleted, adding to the demands of caregiving. Fritz et al. (1997) found financial
concerns and health to be the strongest predictors o f depressive symptomatology,
life satisfaction, and burden in caregivers of people with Alzheimer’s disease.
Similarly, Thompson et al. (1996) discovered in a sample of HIV positive gay
men that concern over finances was one of the strongest predictors of increased
depressive symptomatology. In addition, Leblanc and colleagues (1995)
demonstrated that financial concern was strongly related to the intensification of
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47
depressive symptomatology. Although, in a sample of 86 Latina Alzheimer
caregivers, the majority females (76.6 percent, n= 66), reported not feeling
stressed over financial concerns (Cox & Monk, 1993). Along similar lines, Polach
and Gallagher-Thompson (1997) found that financial concern was not
significantly correlated with depressive symptomatology in a sample size of 42.
However, fear of appearing vulnerable may be the reason that women in the
sample of Latina caregivers of older adults may have been unwilling to
acknowledge that caring for their impaired loved one was placing a financial
burden on them (Polach and Gallagher-Thompson, 1997).
Role Captivity. Role captivity refers to the feeling of being trapped in the
role and feeling like an involuntary incumbent of the caregiver role (Pearlin et al.,
1990). Secondary stressors, such as role captivity, as well as subjective primary
stressors tend to overlap to some degree with recent conceptualizations of the
caregiver burden, a global concept that does not differentiate the different sources
of caregiver stress (Clair et al., 1995; Folkman et al., 1995; LeBlanc et al., 1997).
Research has identified the loss of freedom (role captivity) as an important
component of depressive symptomatology (Lawton et al., 1990; Pearlin, 1975;
Pearlin et al., 1990). Role captivity is recognized as both a consequence of the
primary objective stressors and perceived overload (primary subjective) and a
potential contributor to increased feelings of depression (Lawrence et al.,1998).
In addition Lawrence and colleagues (1988) found that role captivity was an
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48
important predictor of depressive symptomatology even after controlling for
quality of the relationship. Such diverse findings suggest the need for further
inquiring into the role of financial concerns in the stress process.
Not surprisingly AIDS caregiver literature has demonstrated that role
captivity is an important indicator of depression (Leblanc et. al., 1995 Leblanc et
al., 1997; Pearlin et al., 1997). Others have found that the more difficult the task
of AIDS caregiving, the greater the reported feelings of role captivity and the
greater depressive symptoms (Mullen and Aneshensel, 1993). Furthermore, role
captivity was found to be a significant predictor of physical symptomatology and
greater levels of depressive symptomatology in HIV-positive and HIV-negative
Latina caregivers (Land & Hudson, 1999).
Mediators
In this study, mastery and emotional support are hypothesized to mediate
the effects of primary and secondary stressors on depression symptomatology.
Mediation occurs when there is a significant relationship between the independent
variable and mediator, and between the mediator and the dependent variable (Hall,
Kotch, Browne, and Rayens, 1996). According to the buffering model, coping
resources may mitigate the negative influence of stressors on mental health (Cobb,
1976). The following variables of mastery and emotional support have strong
empirical support for both predicting and mediating the affects of depression.
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49
Mastery. A sense of control and caregiver mastery are indicators of self-
efficacy (Bandura, 1982) and/or absence of learned helplessness (Abramson,
Seligman, and Teasdale, 1978). These resources reflect a perceptual stance that
has developed over time in response to background, intrapsychic, and
environmental factors (Wolk, 1976). The large social psychological literature on
these topics has rarely been applied to AIDS caregivers across different caregiving
situations. Caregiver mastery has been defined as “a positive view of one’s ability
and ongoing behavior during the caregiver process” (Lawton et al., 1989, p. 62).
Mirowsky and Ross (1989) argue that a sense of control (mastery) is the most
important psychological resource with which to cope with stress. Lawton and
colleagues (1989) argued that the degree to which mastery is attributed to oneself
varies by the domains of behavioral competence.
This construction differs from the interpretation made by Pealin et al.
(1990) that mastery is a relatively stable view of the self, which includes the
expectation that one is capable of dealing with problems as they arise. From either
conceptualization, however, a sense of mastery is expected to be negatively
related to stress (Miller et al, 1995). Miller and colleagues (1995) found that
caregiver mastery moderated the effects of stressors on depression. They also
found mastery to be the only significant psychological resource predicting role
strain in an additive model, with no moderating effect on specific caregiver
distress. For example, the idea of achieving individual “mastery” over caregiving
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50
experience may be less relevant than “overcoming” another life experience
(Miller et al., 1995). In addition, Miller and colleagues (1995) found caregiver
mastery mediated the effects of stressors on depression and was the only
significant psychological resource for predicting role strain. In a related study,
Hraba and colleagues (1997) found that the effects of economic hardship on
Czech women’s depression was mediated by mastery.
Increased mastery has been posited as one means through which multiple
roles benefit well-being (Skaff & Pearlin). For example, a caregiver who occupies
many roles may have more opportunities for success and accomplishments that
could foster stronger feelings of mastery (Skaff & Pearlin, 1992; Throits, 1983).
Similarly, mastery may carry over from one role to another, or skills obtained in
one role may transfer to another role (Linville, 1987; Repetti, 1987).
Mastery has been defined as both a trait like global characteristic (Pearlin
& Schooler, 1978; Rotter, 1966) and as a multifaceted resource that is specific to a
given domain or role (Krause, 1990). Most of the research on global mastery has
been considered in terms of caregiving with older adults (Broody, Liven, Hoffan,
& Kleban, 1992; Pearlin, Mullan, Semple, & Skaff, 1990; Skaff & Pearlin; 1990).
Researchers who have studied the effects of role-specific mastery on caregiver’s
well-being have found that individuals with greater mastery in the caregiving role
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51
experience less psychological distress (Coppel, Burton, Becker, & Fiore, 1985;
Franks & Stephens, 1992; Pagel, Becker, & Copper, 1985; Townsend, Noelker
Deiming, & Bass, 1989).
For example, in a study of 296 adult daughters who provided care to an
impaired parent, mother or children living at home, and did so while also fulfilling
roles as wives, and employees (Cristensen, Stephens, and Townsend, 1998), it
was found that mastery in each of the 4 roles contributed unique variance to
depression. For all significant relationships, higher levels of mastery were related
to better well-being.
Furthermore, the mediating effect of mastery among people facing high
levels of stress has been demonstrated before (Pearlin, Lieberman , Menaghan,
1981; Roberts, Dunkle, & Haug, 1994). In a study of three adult community
samples, Aldwin and colleagues found that coping strategies differentially
predicted positive or negative outcomes, which in turn predicted current mastery
and depression levels (Adwin, Sutton, and Lachman, 1996).
Emotional Support. The general literature on social support (the literature
not restricted to caregivers) is more informative of the specific mechanisms by
which emotional support reduces depression in caregivers (Li et a., 1997). For
example, in a life-threatening disease, emotional support from others appears to
safeguard against depression (Ell, Nishimoto, Morvay, & Hammitch, 1989). The
empirical literature suggest that emotional support is a valuable form of support
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52
for caregivers (e.g., Dorfinan, Holmes, & Berlin, 1996; Montenko, 1989; Wright
and Aquilino, 1998), specifically with respect to the conditions under which
support either mediates the effect o f stress or has a direct effect on psychological
well-being. The mediating effects theory posits that the beneficial effect o f social
support derives primarily from its protective properties in the presence o f high
levels of stress (e.g. Gerin et al., 1995; Kessler and Essex, 1982; Kessler and
McLeod, 1985; Kessler and Essex, 1982).
On the other hand, the direct model posits that social support enhances
well-being, irrespective of stress level (Bell, LeRoy, and Stephenson, 1982;
Fryman, 1981; Lin, 1986; Seeman et al., 1994; Williams, Ware, and Donald,
1981). Social support has been found to be advantageous to caregivers o f older
adults, as those who have access to the support of others have a lower level of
depressive symptoms than those without social support (Li et al., 1997). For
example, caregivers who have more frequent contact with family and friends tend
to have higher morale and lower levels of burden than caregivers with less
frequent contact with their social network (Fengler, & Goodrich, 1979; Zarit,
Reeves, & Bach-Peteson, 1980; Li et al., 1997). A higher level of participation
with family has also been found to be associated with a greater degree of life
satisfaction in caregivers (Haley et al., 1987a; Wilson et al., 1990).
Conversely, perceived inadequacy of social support has been found to be
related to poorer mental heath (Fiore, Beker, and Copple, 1983; George and
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53
Gwyther, 1986) and higher sense of burden (Gilhooly, 1984). Emotional support,
a form of social support, is defined as the receipt of reassurance and respect from
members of an individual’s personal network and having someone with whom to
confide (Antonucci and Akiyama, 1987). Emotional support is a functional
support measure for which mediating effects have been suggested (Cohen and
Willis, 1985; Kessler and McLeod, 1985). Furthermore, researchers found that
emotional support had a buffering effect for both wives and daughters (Li et al.,
1997).
In addition, where caregiving involves loss and deprivation, social support
can promote feelings of control and self-worth that counteracts depressive
symptoms (George, 1989; Stroller and Pugliesi, 1989). Past research has shown
that emotional support has a greater impact on stresses emerging from highly
salient roles than those linked with less central roles (Krause, 1994; Krause and
Borawski-Clark, 1994). For example, anticipating the loss of the role of wife may
challenge a woman’s sense of purpose and meaning in life (Skaff and Pearlin,
1992). Therefore, wife caregivers may be particularly in need of reassurance and
support from others to reinforce feelings of self-worth. In addition, a wife whose
husband becomes ill or disabled may experience a loss of emotional support from
the husband (Li et al., 1997). Pearlin, Turner, and Semple (1989) described the
loss o f love, affection, and reciprocity of exchange with the spouse as one of the
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54
most painful losses and powerful sources of strain on spousal caregivers. The
emotional support provided by one’s social support network can make one feel
loved and cared for in the context of caregiving.
Li and colleagues (1997) found that emotional support mediated stressors
of spouse behavior problems and ADLs predicting depressive symptoms both in
wives caring for their elderly husbands and daughters caring for their elderly
parents. In another study, Shewchuk, Richards, and Elliott (1998) found
expressive support as the best predictor of the trajectories of change in depressive
behavior and anxiety among caregivers over the course of the year. Explained by
Pearlin and colleagues as a crucial component in the experience of caregiver
emotional adjustment (Pearlin, Aneshensel, Mullan, & Whitlach, 1996), lower
levels of expressive support throughout the year were associated with higher rates
of change in anxiety and distress. Caregivers often experience an erosion of social
support and the relative absence of emotional support, may have pronounced
ramifications for their emotional well-being (e.g., Quitter, Glueckauf, & Jackson,
1990).
In addition, researchers using path analysis of Chinese caregivers found
that emotional support played a role in mediating the relationship between role
overload and depression (as an indicated by an interaction term), as well as a main
effect (i.e. more emotional support was related to decreased depression in the
Shanghair sample) (Phenninx, Tilburg, Boek, Deeg, Kreinburg, and Eijk).
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55
Similarly, Li, Seltzer, and Greenberg (1997) found that emotional support
mediated stressors for wife and daughter caregivers. Among wife caregivers,
emotional support mediated the stress emanating from the husband's behavior
problems. And for daughters, emotional support mediated the stress emanating
from both the behavioral problems and the ADLs limitations of their parent.
Research indicates that emotional support and mastery are important
mediators to use when investigating the stress process of informal AIDS
caregiving. Yates and colleagues (1999), using the stress model presented by
Pearlin, Mullan, Semple, and Skaff (1990), explored the relationships between
caregiving stressors and caregiver well-being in a representative community
sample of disabled elders and their informal caregivers. Path analysis revealed
that the potential mediators for the primary stressors on depression included
mastery and emotional support. Caregiver mastery and emotional support also
affected caregiver overload and depression, both with direct effect on depression.
Finally, regardless of primary stressors, caregivers with high levels of mastery or
emotional support were at lower risk for depression.
Depression
Previous research suggest that informal caregiving for older adults (Lovett
& Gallagher, 1988; Semple, 1992; Stevenson, 1990) and caregiving for the person
with AIDS (Turner et al, 1994; Tuner & Pearlin, 1989; Folkman et al, 1994) is
time-consuming, labor- intensive, and stressful. As mentioned earlier, depression
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56
has been used as an outcome of mental well being for studying older adult
caregivers and AIDS caregivers. Caregivers in a wide range of areas encounter
demands that tax or extend their normal adaptive capacities and thus face
prototypical situation of chronic stress (Aneshensel, 1992). As a result,
researchers have examined the impact of caregiving on well-being, mostly among
samples of people caring for a frail older relative (Visintainer & Williamson,
1990; Pearlin, 1994). Though it has been difficult to make causal inferences about
the impact of caregiving on health, there is an association between caregiving and
negative physical and emotional health. Consequences have been consistently
demonstrated, more so with regard to emotional health, such as depression.
Summary of Literature Review
The stress process model developed by Pearlin and colleagues (e.g.,
Pearlin et al., 1994; Pearlin et al., 1997) for examining caregivers is a relevant
theoretical framework for researching the stress process of depression in informal
AIDS caregivers who are Anglo gay male partners, Anglo women, or Latinas. The
stress process model is inclusive of all the biological, psychosocial, and cultural
complexities that are both similar and unique to each of these informal AIDS
caregivers. Based on empirical and theoretical literature, therefore, these variables
were selected as significant path variables for modeling depression in this
comparison study of informal AIDS caregivers. In this analysis, the background
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57
and social context of AIDS caregiving, as well as how the stress process model
(e.g. Pearlin et a., 1994, 1997) may differ among the three groups of caregivers
were examined.
Hypotheses
The over arching hypothesis will examine the degree to which the stress
model differs across these groups of informal AIDS caregivers. The direct and
indirect effects are postulated from the stress process model and supporting
literature. Separate path analyses will be conducted for each caregiver group.
More specifically the three path analyses will examine the degree to which the
model differs across AIDS caregiving groups. The direct and indirect effects are
postulated from Pearlin’s stress process theory, previous empirical research, and
research using part of Pearlin’s stress model of caregiving. The four hypotheses
examined in this study are as follows:
Hypothesis #1 ( Background characteristics of AIDS caregivers: age, income,
self-reported health): The background characteristics of AIDS caregivers of age
and self-reported health will both directly and indirectly, through primary
stressors and secondary stressors, affect the depression level of the caregiver. In
addition income will indirectly effect depression. More specifically, it is
hypothesized that the younger the caregivers, the poorer their the health and the
lower the income, the greater their risks for depression.
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58
Hypothesis #2 ( Primary stressors: the total amount of activities in daily
(ADLs) and role overload): The primary stressor, the objective indicators ( the
total amount of activities in daily living (ADLs) will directly and indirectly affect
depression through role overload (the primary subjective stressor) and role
captivity (the secondary stressor); and the primary stressor, the subjective
indicators (role overload) will directly and indirectly (through secondary
stressors) affect the level of depression of the caregiver.
More specifically, it is hypothesized that the higher the levels of the primary
stressors (subjective and the objective indicators), the greater risk for depression
for the caregivers.
Hypothesis #3 (Secondary stressors of financial concern and role captivity):
The secondary stressors of financial concern and role captivity will both directly
and indirectly affect the depression level of the caregiver. More specifically, it is
hypothesized that the greater the level of financial concern and the greater the
level of role captivity, the greater the risk for depression for the caregiver.
Hypothesis #4 ( Stress mediators of mastery and emotional support):
The stress mediators (mastery and emotional support) will directly affect the
relationship among the primary stressors, secondary stressors, and the depression
of the caregiver. More specifically, it is hypothesized that mastery and emotional
support will directly reduce stressors and mediate there affect on depression.
Please see Figure 2: Hypothesized Path Model for AIDS Caregivers.
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Figure 2: Hypothesized Path Model for AIDS Caregivers
Age
Health
Financial
Concern
Income
Role Captivity
Role Overload Mastery
Emotional
Support
ADLs
Depression
U l
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Chapter 3
Methodology
Overview
This chapter describes specific aspects of the investigation and provides a
description of the AIDS caregiver study and the Latina AIDS caregiver study
which used the same instruments and inclusion criteria. The following sections in
this chapter include: (a) research design, sampling strategy and data collection for
the Anglo gay partners and the Anglo women caregivers, (b) research, sampling
strategy and data collection for the Latina caregivers; (c) instrumentation; (d)
statistical methods in the data analysis; and (0 delimitation and limitations.
In preview, the designs for this study are descriptive, nonexperimental in
nature, utilizing cross-sectional survey designs. Even though this research relies
on survey and cross-sectional data, both hypothesis-testing and theory-building
can take place as it utilizes causal modeling in its analysis, that of path analysis,
where the temporal ordering of variables in a logical progression is argued for
(Pedhazur& Pedhazur Schmelkin, 1991; Pedhazur, 1997; Weinbery; 1982).
Study and Sample for Gav Partners and Anglo Women
This study is partly based on a sample of gay and bisexual men and
traditional family caregivers from secondary data analysis of the “AIDS Care
Study” 1990-1994 (Pearlin, 1990-1994). The sample of 192 gay Anglo men and
102 Anglo women for this study were selected out from the “AIDS Care Study.”
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61
The cross sectional data taken from this study came from a panel survey of
informal AIDS caregivers in Los Angeles County and the San Francisco Bay area
(N = 642). Face-to-face structured interviews were conducted by interviewers
hired and trained for this study. All interviewers participated in a program of
training that involved didactic sessions and practice interviews. There were also
debriefing sessions in which interviewers were reconvened to discuss difficulties
encountered in the field and to review the interview schedules. As interview
protocols were edited and coded by the support staff, interviewers were routinely
called to provide feedback on their performance. The interviews were conducted
at the convenience of the caregiver either in the home or in on-campus rooms set
aside for interviewing. At the end of the interview, which lasted about an hour and
a half, respondents were given $25 to encourage participation and as a symbol of
the importance placed on their time and experience.
Several methods were used to collect the sample (Pearlin, Mullan,
Aneshensel, Wardlaw, & Harrington; 1994). Respondents were recruited from a
variety of channels, primarily service agencies (34%), advertisements in news
media, particularly gay newspapers (40%), medical settings (10%), and flyers
distributed in the gay community (13%). Forty-two percent of this sample was
recruited in Los Angeles and 58% in San Francisco. Approximately 32% were
referred through community-based AIDS agencies in both cities, the rest primarily
through media advertising.
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62
The same criteria guided recruitment in the traditional family sample,
except that the relationship criteria were expanded to include traditionally-defined
family relationships, spouses/heterosexual couples, mothers, and siblings. In
terms of their relationship to the PWA, this sample is primarily composed of gay
men caring for a lover (37%) or a friend (37%). The remainder of the sample
includes traditional family members caring for a legal spouse (9%), or another
relative (17%), typically a son or brother. Thus, the sample sociodemographically
resembles most what Turner et al., (1994) have called “central cities caregivers.”
Nevertheless, it is likely that some AIDS caregivers in urban areas are
under represented in current studies of caregiving prevalence, in particular low-
income persons caring for people infected through intravenous drug use ( Ettner &
Weissman, 1994).
The typical caregiver is a gay Caucasian male who describes the PWA for
whom he is caring as his partner or lover; he lives with the PWA and has been
providing care for him for about a year (Pearlin et al., 1994). This example of an
AIDS caregiver differs from those providing assistance to persons with other
health needs, in particular those who care for older adults. The most notable
difference in this regard is that traditional family caregivers are likely to be
considerably older than AIDS caregivers and to be women rather than men
(Stone, Cafferata & Sangl, 1997; Pearlin, Mullan, Semple, & Skaff, 1990)
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63
In order to participate in the study caregivers had to meet a number of
inclusion criteria. Among these were: (1) caregiving had to be provided in the
community, outside of institutional settings such as hospitals or hospices; (2)
caregiving could not be given in conjunction with employment as a health
professional; (3) assistance provided by the caregiver had to extend beyond the
offerings of emotional support to more instrumental
types of caregiving and help with daily activities of living; (4) the caregiver had to
be the primary provider of assistance to the PWA; and (5) the respondent was
providing at least half of the care.
This study selected out Anglo gay male AIDS caregivers who were caring
for a partner/lover and Anglo female caregivers for this path analysis comparison.
The following analyses were carried out on the first wave of data consisting of a
subsample of 192 Anglo gay partner caregivers, 102 Anglo female caregivers, and
154 Latina caregivers.
Study and Sample of Latinas
The design of this study is based on a cross-sectional purposive sample,
secondary data analysis of “Latina AIDS Caregiver Study.” The study of Latina
AIDS caregivers used the conceptual model and instruments of the AIDS Care
Study (Pearlin, 1991). The study was designed to examine a number of issues in
Latina AIDS caregiving (Land & Hudson, 1997): 1) to analyze the stress and
coping process as it relates to physical and mental well-being of caregivers; 2) to
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64
examine the possible buffering effects o f service utilization for those who
received care; 3) to examine various forms of social support and self-efficacy on
the stress process; and 4) to examine how various sociodemographic background
variables related to respondent stress. The design of this study is based on using
secondary data of a cross-sectional purposive sample of 154 Latina informal
AIDS caregivers in the Los Angles area. The sample was drawn between February
1995 and August 1996. Face to face interviews, lasting an average of two hours
were administered by trained bilingual interviewers, in a setting agreed upon by
the interviewer and the respondent; most took place in the caregivers’ home.
Respondents were paid $25 for each interview. The “Latina AIDS Caregiver
Study” followed the same protocol for training the interviewers and collecting
data as the AIDS Care Study (Pearlin, 1991).
In order to participate in the study, Latina caregivers had to meet a number
of inclusion criteria (Land and Hudson, 1999): 1) caregiving had to be provided in
the community rather than institutional settings; 2) caregiving could not be
provided in conjunction with employment as a health provider, such as in nursing
or attendant care; 3) assistance had to extend beyond offering emotional support
to more instrumental types of caregiving and help with activities of daily living;
4) the caregiver had to be to be currently providing care and be the primary
provider of assistance to a loved one with AIDS; and 5) the caregiver had to be
self-identified as Latina over 16 years of age.
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The study recruited 18 AIDS service organizations in the Los Angeles area
to act as referral sources (Land & Hudson, 1999). Respondents for this study were
referred from agencies and clinics, as well as through hospitals, media
announcements, flyers, and by word of mouth. The sample of 154 consisted of 50
respondents who were referred through AIDS service organizations, 100 through
direct contact with prospective respondents at outpatient clinics, and the
remaining through media announcements from other respondents.
Instrumentation
The Latina AIDS Caregiver study utilized both normed, validated
instruments and those constructed for the purposes of this study. English and
Spanish language versions of the questions were used since it was the aim of the
researchers to achieve semantic as well as idiomatic and conceptual equivalence
(Land & Hudson, 1999). The Spanish language version was translated then
backtranslated into English by an independent bilingual, bicultural graduate
student of Mexican descent, who was blind to the original English version of the
instrument. The two questionnaires were highly comparable. Standardized
instruments included: 1) Pearlin indexes measuring levels of caregiving burden,
life stress, coping, social support, and mastery (Pearlin, Mullan, Semple & Skaff,
1990; 2) the Brief Symptom Inventory (Acosta, 1994; Derogatis, 1992, 1983),
measuring general mental well-being; and 3) background variables. Minor
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66
revisions were made on validated instruments in order to accommodate the Latino
culture (Land and Hudson, 1999).
Measures
Background variables. The caregivers age was used as a background
characteristic of this study. Age was measured by caregivers responding to a
single self reported item using date of birth. Income was measured by the total
personal annual income before taxes. In addition, the caregivers health was used
as a background characteristic. Overall health of the caregiver was measured with
a 5-point scale, where 5 = excellent health, 4 = very good, 3 = good, fair = 2, and
1 = poor health. This single item measure has been found to be reliable and valid
in empirical research with caregivers of the elderly (Aneshensel, Pearlin, and
Schuler, 1993; Pearlin et al., 1990; Pearlin and Turner, 1983; Hraba et al., 1997;
et al., 1997; LeBlanc et al., 1995; LeBlanc, 1997).
Primary objective stressors. Activities in daily living (ADLs) are primary
objective stressors in that they directly reflect the nature of the caregiving
situation, such as the degree to which the PWA routinely requires assistance with
the activities of daily living. For this analysis, a measure of assistance with ADLs
was built from responses to 16 survey items comprising a summative measure that
reflects the degree to which the caregiver routinely provides help to the PWA,
including: help with personal ADLs, adapted from Lawton and Brody (1963) and
incorporating (eating, bathing/showering/washing hair, moving around/walking,
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67
dressing/undressing, brushing teeth/hair, getting in/out of bed, going to the
bathroom); instrumental ADLs, adapted from Kratz and colleagues (1962)
incorporating (housework/housecleaning, shopping for food, cooking/preparing
food, laundry, transportation); and assistance with PWA’s affairs, adapted by
Aneshensel and colleagues (1995) including (management financial affairs,
management of legal affairs, coordinating the help given by friends or family,
dealing with doctors, nurses, or clinic staff, and keeping in touch with the PWAs
family or friends). The ADLs used in this study are well validated measurements
in the study of gay male AIDS caregivers (Pearlin et al., 1994, LeBlanc et., 1995;
LeBlanc et al., 1997; Pearlin et al., 1997). The summated score has a possible
range of 16 to 64, with higher scores indicating greater level of assistance
provided by the caregiver. The internal consistency described by the alphas in this
section will be reported across groups respectively: Anglo gay partners alpha =
.84; Anglo women alpha = .86; Latinas alpha = .80).
Primary subjective stressors. The subjective measures are a more direct
assessment of the intensity of stress. The primary subjective measures are not
based on what caregivers do for the PWA, but on how they experience to what
they experience. This study used one indicator of subjective primary stress; role
overload. Role overload, as developed by Pearlin and colleagues (1990), is a four-
item summative scale asking the extent to which the effort devoted to caregiving
drains the energies and stamina of the caregiver. The scale is based on the strength
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68
of agreement or disagreement with statements that include: 1) you are exhausted
when you go to bed at night, 2) you have more things to do than you can handle,
3) you don’t have enough time just for yourself, 4) no matter how much you do,
you’re never able to finish what needs to be done. Role overload has been found
to be well validated measures in their stress process literature (Aneshensel &
Stone, 1982; Noonan et al., 1997; Patterson et al., 1997; Pearlin et al., 1990;
Pearlin et al., 1994, LeBlanc et., 1995; LeBlanc et al., 1997; Pearlin et al., 1997).
The summated score has a possible range of 4 to 16, and higher scores indicating
a higher level of role overload. The alpha for this scale is .80 among Anglo gay
partners, .80 for the Anglo women and .82 for Latinas.
Secondary subjective stressors. The secondary subjective stressors
included in this study were financial concern and role captivity. Financial concern
is a summative scale with a possible range of 5 to 20, with higher scores
indicating a higher level of financial concern. This scale has been found reliable
and valid in empirical research of gay male AIDS caregivers (LeBlanc, et al.,
1995; LeBlanc, 1997; Pearlin et al, 1997). Financial concern was captured with
statements designed to measure the caregivers’ concern with: 1) being forced to
move from their homes, 2) using up all your savings, 3) having to
spend all your income, 4) being in debt, 5) your ability to meet future medical
cost. The alpha for this scale is .77 among the Anglo gay men, .80 for the Anglo
women and .76 for Latinas.
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69
Role captivity is based on the strength of how people agree or disagree
with statements that include: 1) wish you were free to lead a life of your own; 2)
feel trapped by the PWA’s illness; 3) wish you could just get away. Role
captivity, as developed by Aneshensel and colleagues (1993), is a three-item scale
measuring the sense of being an unwilling incumbent of the caregiver role. Role
captivity has been found to be a well validated measure in other stress process
caregivers research (Aneshensel & Stone, 1982; Noonan et al., 1997; Patterson et
al., 1998; Pearlin et al., 1990; Pearlin et al., 1994, LeBlanc et., 1995; LeBlanc et
al., 1997; Pearlin et al., 1997). The summated score has a possible range o f 3 to
12, with higher scores indicating a greater level of role captivity. The alpha for
this scale is .78 among the Anglo gay men, .77 for the Anglo women, and .81 for
Latinas.
Mediators
The mediators chosen for this study are mastery and emotional support.
Mastery can be described as a positive view of one’s ability and ongoing behavior
during the caregiving process (Lawton et., 1989). An alternative (definition)
conceptualization of mastery is a relatively stable view of the self that includes the
expectation that one is capable of dealing with, or has control over, problems
arising in their lives (Pealin et al.,1990). Both interpretations imply that mastery is
negatively related to distress, specifically the stress of caregiving (Miller et al.,
1995). The Pearlin Mastery Scale consists of eight items which relate to the
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overall control that individuals felt they had in their lives, including how much
they felt they could change their lives, feeling helpless in dealing with problems
of life, how much control of the future they had, and what they thought they could
do in their lives (Pealin et al., 1990). Mastery was assessed using a summative 7-
item index developed by Pearlin and Schooler (1978). Items were rated using a 4-
point Likert scale that ranged from “strongly agree” to “strongly disagree.”
Sample items include “I feel that I have a number of good qualities” and “I feel
that I’m a person of worth, at least on an equal plane with others.” The Pearlin
Mastery Scale has been well validated in used and many similar studies
(e.g.,Aldwin & Sutton, 1996; Brown et al, 1994; Pennex et al., 1998; Christensen,
Stephens & Townsed, 1998; Noonan & Tennstedt; 1997; Pearlin et al., 1990;).
The summated score has a possible range 7 to 28, with higher scores indicating an
increased level of mastery. The alpha for this scale is .75 among Anglo gay men,
.73 for Anglo women, and .77 for Latinas.
Emotional support is defined as the perceived level of emotional support
that caregivers received from friends and relatives (Yates et al., 1990). This was
measured by an seven-item scale in which the responses were coded on a 4-point
scale, from “strongly agree” to “strongly disagree.” The questions focused on
issues of trust, caring received from others, ability to confide in someone, and
expression of support to caregiver by others (Pearlin et 1990). The emotional
support scale has been well validated and used in a number of caregiver studies
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(Patterson, et a., 1998; Pearlin, Mullan, Semple, & Skaff, 1990; Penninx et. al.,
1998; Aneshensel, 1995; Pearlin, 1989;, Pearlin, Mullan, and
Zarrit, Aneshensel & Pearlin, 1997). The summated score has a possible range of
8 to 32, with increased scores indicating a higher level of mastery. The alpha for
this scale is .82 for Anglo gay men, .82 for Anglo women, and .79 for Latinas.
Outcome Depressive Symptomatology. The final factor and outcomes of the stress
process (Pearlin et al., 1998) are compiled of indicators of the impact of the
process on the well-being of people. In this study, depression was chosen as a
single stress outcome variable. Depressive symptomatology for the gay partners
and Anglo women was measured by a six item adaptation of the Hopkins
Checklist (Derogatis, et al., 1974; Pearlin et al., 1997; LeBlanc et al., 1997). Items
ask the caregivers how often in the past week: (1) they lacked enthusiasm for
anything, (2) were bored or had little interest in anything, (3) cried easily, (4) felt
downhearted or blue, (5) were slowed down or lacked energy, and (6) felt that
everything was an effort. Response categories ranged from “no days” (1) to “five
or more days in the last week” (4). This summative measure of depressive
symptomatology has a possible range from 6 to 24, with higher scores indicating a
higher level of depression.
The Latinas depression was measured by an updated and shortened version
of Hopkins Checklist for depression called the Brief Symptom Inventory (Acosta,
Nguyen, Yamamoto, 1994; Derogatis & Melisaratos, 1983, 1987; Derogatis 1992;
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72
Derogais et al., 1974). Construct validity and criterion-related validity have been
evaluated and normed on psychiatric and non-psychiatric outpatients, and normal
controls (Derogatis & Melisaratos, 1983). Items ask Latina caregivers about how
often in the past week: (1) had thoughts of ending your life, (2) felt lonely, (3)
felt blue, (4) felt no interest in things (5) felt hopeless about the future, and (6) had
feeling of worthlessness. The BSI is rated on a 5 point scale of distress (0-4),
ranging from “not at all” (0) at one pole to “extremely” (4) at the other. The alpha
for this scale is .83 for Anglo gay men, .83 for Anglo women, and .80 Latinas.
Data Analysis
SPSS (1997) was used by the author in the analyses of the data. The
following statistical procedures were performed: (a) Descriptive statistics of the
major variables and of the sociodemographic characteristics were analyzed. This
includes, bivariate analyses to compare the three groups on all demographic
characteristics and One-Way Anova for continuous variables and Chi-Square for
categorical variables; (b) The three groups were compared using One-Way Anova
to analyze differences in the major variables; (c) Correlation tables were analyzed
among the mediating and outcome variables, as well as between the
sociodemographic indicators and the independent, mediating, and outcome
variable; (d) Regression-based path analyses were used to estimate the effect and
significance level of the exogenous and endogenous variables in this stress
process model of depression.
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The following regressions were run to address each hypothesis. Please see
Figure 2: Hypothesized Path Model for .AIDS Caregivers Model and Table I:
Regressions Analyzed For Each Group of AIDS Caregivers.
Table 1: Regressions Analyzed For Each Group of AIDS Caregivers
Analysis Numoer Dependent variaoie independent Vanaoles
1 AOLs Age
Self R eported Health
Income
2 Role Overload AOLs
Age
Self R eported Health
Income
3 Role Captivity incom e
AOLs
Role Overload
* Financial Concern Age
Self R eported Health
Income
Role Overload
Role Captivity
3 Emotional Suoport AOLs
Role Overload
Role Captivity
Financial Concern
9 Mastery AOLs
Role Overload
Role Captivity
Financial Concern
Emotional Suooort
7 Oppression Age
Self R eported Health
Role Overload
Role Captivity
Financial C oncern
Emooonal Support
M astery
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74
Hypothesis #1 : The background characteristics of AIDS caregivers (age,
income, and self-reported health) will both directly and indirectly, through
primary stressors and secondary stressors, affect the depression level of the
caregiver.
Analysis: The independent variables income, age, and health were regressed on
the dependent variable ADLs. In addition the independent variables age, income,
health, and ADLs will be regressed on the dependent variable role overload.
Hypothesis #2 : The primary stressors [which include the objective indicators
the total amount of activities in daily living (ADLs) and the subjective indicators
(role overload)] directly and indirectly (through secondary stressors) affect the
level of depression of the caregiver.
Analysis: The independent variables role overload, ADLs, income, emotional
support, and mastery were regressed on the dependent variable role captivity. In
addition, the independent variables role overload, role captivity, income, and age
were regressed on the dependent variable financial concern.
Hypothesis #3 : The secondary stressors of role captivity and financial concern
will both directly and indirectly affect the depression level of the caregiver.
Analysis: The independent variables role captivity, income, role overload, age,
and income were regressed on the dependent variable financial concern.
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75
Hypothesis #4 : The stress mediators (mastery and emotional support) will
directly affect the relationship among the primary stressors, secondary stressors,
and the depression of the caregiver.
Analysis: The independent variables mastery, emotional support, role overload,
ADLs, and income were regressed on the dependent variable role captivity.
The independent variables of role overload and ADLs were regressed on
the dependent variable emotional support. In addition, the independent variables
of role overload, ADLs, and emotional support were regressed on the dependent
variable mastery.
Finally, the independent variables of health, emotional support, mastery,
age, financial concern, role captivity, ADLs, and role overload were regressed on
the dependent variable depression.
The same hypothesized path analysis model was conducted for each group
of caregivers to test the proposed model and study hypotheses. Path analysis is a
series of progressive multiple regression analyses, which has several advantages
over other statistical approaches of causal models (Pedazur & Pedhazur
Schemelkin, 1991; Pedhazure, 1997; Asher, 1983). Among these: (a) the direct
and the indirect effects of the independent variables on the dependent variables,
through intervening variables, can be differentiated; (b) simultaneous relations
among the variables can be analyzed; (c) the model’s parameters are estimated to
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76
determine the significance of each hypothesized path, and an estimate of the
relative strength of paths in relation to others is accomplished; (d) joint, or
spurious, effects due to relations with a common cause are determined.
While the notion of causation is a controversial one in research, a causal
model is “indispensable” in explaining phenomena, and, in this study, it is to be
guided by theory (Pedhazur & Pedhazur Schemelken, 1991; Pedhauzur, 1997).
Further, causation in the context of social science research is the mere designation
of “a hypothesized unobserved process” (Lavee et al., citing Bentler, 1980). As
such, the analysis methods of causal models are useful in studying complex
theoretical models, beyond only using multiple tests of bivariate relationships, as
multiple variables are proposed to influence one another in some order (Asher,
1983; Buehler, 1990; Lavee et al., 1985; Pedhaur & Pedhazur Schmelkin, 1991;
Pedhazur, 1997; Weinburg, 1982). Even though this research relies on survey and
cross-sectional data, both hypothesis-testing and theory-building can take place as
it utilizes causal modeling in its analysis, where the temporal ordering of variable
in a logical progression is argued for (Asher, 1983; Pedhazur & Pedhazur
Schmelkin, 1991; Pedhazur, 1997). In addition, path analysis is appropriate for
testing the mediating effects of variables in theoretical models (Asher, 1983;
Baron & Kenny, 1986; Pedhazur, 1997; Weinburg, 1982). In this research, a
model based on theory and prior research is being tested, where the relationship
among independent, or exogenous, and mediating variables are analyzed.
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Delimitations
The following delimitations were present in this research:
(a) The sample of Anglo gay partners and Anglo female was limited to AIDS
caregivers caring for some one with AIDS in 1993 in San Francisco and Los
Angeles, California.
(b) The sample o f Latinas was limited to AIDS caregivers caring for someone
with AIDS from February 1995 through August 1996 in Los Angeles, California.
(c) The data analysis included only the respondents who completed all the
sections of the questionnaire.
(d) The sample was limited to the respondents who volunteered to participate
in the study.
Limitations
The following limitations present threats to the validity of this research:
(a) The major limitation is its cross-sectional data, which does not allow for
causal inferences and restricts interpretation of the results.
(b) Most of the instruments were normed on Anglo caregivers. Thus, the
construct validity o f this study may be questioned for Latina caregivers, and may
have implications for both the internal and external validity of the findings.
(c) The respondents were not a random sample of informal AIDS caregivers in
the United States. Thus, the results may not be generalizable to other AIDS
caregivers. However, it is possible to generalize to AIDS caregivers in large
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78
central cities. Due to the recruitment methods and study location, these population
samples probably best represent what Turner et al. (1994) call AIDS caregivers in
the central cities.
(d) The sample sizes of the groups were different, and statistical significance is
in part a function of sample size (Kazdin, 1992).
(e) Self-reports may be compromised by such additional artifacts such as social
desirability bias, and the need for social approval (Kazdin, 1992). Soical
desirability appears to be particularly prominent with Latinos (Golding et al.,
1991). In interviews women may seem more willing to report distress than men
(Gore& Colten, 1992).
Summary
This chapter covered the methodology and procedures used in comparing
these three groups of AIDS caregivers, as well as the instrumentation used for this
study and the methodological constraints placed it.
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79
Chapter 4
Results
In this comparative study of the stress process, the results consist of the
sociodemographic characteristics, means and standard deviation of the major variables,
bivariate correlations and regression -based path analyses of each of the groups.
Regression assumptions were checked and no serious of linearity, homoscedasticity, or
normality were noted. The reporting of the path analyses of each of the groups
will be followed by a comparison using unstandardized beta coefficients, to
examine the degree to which the stress model differs across three groups.
Respondent characteristics
The sample of 194 Anglo gay partners was relatively young ( M = 39.37, SD =
9.40) compared to caregiving in other contexts, e.g., those caring for frail elderly spouse
(Table 2). The mean annual income for this sample is within the 24,000 - 31,999 range
and 59.8% had a 2 or 4 year college degree (Tables 2 and 3). Regarding employment
status, 67.5 % reported holding jobs the time of the interview. Of the total of 194 Anglo
gay partners, 40% were seropositive and thus carried the dual status of caregiver and
patient.
The mean age of the Anglo women sample of 129 was 46 (M = 45.6, SD =
13.29). The mean annual income of this sample is within the range of 16,000 - 23,999,
and 58.9% had a 2 or 4 year college degree (Tables 2 and 3). Most, 62% reported that
they were working and only 4.7% reported that they were seropositive. In examining
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their relationships with the persons for whom they provided care, approximately a third
were caring for their spouse or partner (24.8%) and approximately two thirds (75.2%)
provided care to other family members or friends.
The sample of 154 Latinas consisted primarily of poverty-level immigrants; the
mean annual income was within the $0 -$7,999 range; most, 72.5% had no high school
education; and 77% were not employed. In addition, of the total, 74 % were foreign bom
and 71% chose to be interviewed in Spanish. The mean age of the Latinas sample was 37
(M = 37.24, SD = 9.40). Of the 154 Latinas, 37% were seropositive and thus carried the
dual status of caregiver and patient. Approximately a third were caring for their spouse
or partner (31.8%) and two thirds (68.2%) cared for other family members or friends.
(68.2%).
TABLE 2: Sociodemographic Characteristics of AIDS Caregivers
Characteristic Gay Partners
n = 194
Anglo Women
n = 129
Latinas
n = 154
Age*** 1 6-2 5 3.6% 3.9% 16.9%
2 6 -3 5 33.5 25.6 36.4
3 6 -4 5 41.2 24.0 24.0
4 6 -5 5 16.0 24.8 9.1
>55 5.7 21.7 13.6
Education*** No high school 3.6% 3.1% 72.5%
High school 11.3 13.2 16.3
Some college 0.0 0.0 2.6
2 or 4 year college degree 59.8 58.9 7.2
Some graduate school 25.3 24.8 1.3
Income*** $0 - 7,999 13.9% 27.9% 66.9%
58,000- 15,999 12.4 17 .1 23.5
516,000-23,999 13.4 16.3 4.4
524,000-31,999 13.4 9.3 3.7
532,000 - 39,999 22.2 15.5 1.5
540,000 - 47,999 8.8 6.2 0.0
> 548,000 16.0 7.8 0.0
HIV Status*** Positive 40.2% 4.7% 37.0%
Negative 59.8 95.3 63.0
Relation to PWA*** Other/Family 0.0% 75.2% 68.2%
Spouse/Partner 100.0 24.8 31.8
Employment*** Working 67.5% 62.0% 22.1%
Not working 32.5 38.0 77.9
Note: Chi-square statistic was used. * * * <0.001
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81
TABLE 3: M eans and Standard D eviation of M ajor V ariables
Major Variables
Gay Partners
n = 194
M (SD)
Anglo Women
n= 129
M (SD)
Latinas
n= 154
M (SD)
Age 39.37 (9.40)* 45.06 (13.29)b 37.24(13.77)*
Health 3.65 (.90)* 3.55 (.96)* 2.91 (1.03)b
Income 4.07(1.97)* 3.17 (1.94)b 1.49 (.86)c
ADLs 1.91 (.57)* 1.99 (.70)* 1.95 (.55)*
Role overload 2.79 (.66)* 2.80 (.63)* 2.69 (.74)*
Role captivity 2.12 (.89)* 2.20 (.86)* 2.19(1.01)*
Financial concern 2.49 (.83)* 2.42 (.85)* 2.85 (1.00)b
Emotional support 3.28 (.49)* 3.34 (.51)* 3.04 (,55)b
Mastery 2.91 (.51)* 2.94 (.50)* 2.69 (,44)b
Depression 2.01 (.69)* 2.01 (.72)* 2.16 (.80)*
Note: a b c ANOVA statistic was used and Scheffe's test fo r comparisons between means were
conducted.
Path Model Variables
The ANOVA statistic was used along with the Scheffe’s test for
comparisons of between the means of the major study variables (see Table 3).
With regard to background variables, some significant differences were found.
The Anglo women caregivers were significantly older than the gay partners and
Latinas (46 years of age for Anglo women versus 39 years for partners and 37
years for Latinas, p = .000). The Latinas self reported health score was
significantly lower (lower scores reflecting poorer health) than the self-reported
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health scores of the gay partners and Anglo women (M = 2.91 for Latinas versus
M = 3.65 for gay partners and M = 3.55 for Anglo women, p = .000 ). All three
groups were significantly different in regards to income (the Latinas mean annual
income was within the range of $0 - 7,999 versus mean annual income for the
Anglo women was within the range of $16,000- 23, 999 versus mean annual
income for the gay partners was within the range of 24,000 - 31,999).
In examining the levels of primary stressors of ADLs and role overload in
the three groups, no significant differences were found. No differences were found
in the levels of the secondary stressor, namely, role captivity. Not surprisingly,
the Latinas reported significantly higher levels of the secondary stressor of
financial concern than the other two groups (M =2.89 for the Latinas versus M =
2.49 for gay partners and 2.42 for the Anglo women, p = .000). However,
significant different differences were found in the respondents’ levels of the
mediating variables. The Latinas reported significant lower levels of emotional
support (M = 3.04 for Latinas versus M = 3.28 for gay partners and M = 3.34 for
Anglo women, p = .000) and mastery (M = 2.69 for Latinas versus M = 2.91 for
gay partners and M = 2.94 for Anglo women, p = .000). In order to compare the
three groups on depression, the BSI depression scale, the depression scale taken
by the Latina sample, was collapsed from a 5 - point continuum to a 4 - point
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83
continuum. No significant differences were found in the level of depression
among the three groups ( M = 2.01 for the gay partners, M =2.01 for the Anglo
women and M = 2.16 for Latinas).
Results of the Path Models
Gav Partner. The bivariate correlations of the study variables for the gay
partners are shown in Table 4. Looking first at the background characteristics, age
is positively related to ADLs and positively related to role captivity. Age is
negatively related to financial concern and depression. Health is positively related
to role captivity and negatively related to depression. That is, better health is
associated with increased levels of role captivity and poorer health is associated
with increased levels of depression. As expected, income is negatively related to
financial concern. The primary objective stressor (ADLs) is positively related to
the subjective stressor role overload and depression. In turn, role overload is
positively related to both secondary stressors (role captivity and financial concern)
and negatively related to both mediators (emotional support and mastery).
Additionally, role overload is positively related to depression. Role captivity is
negatively related to both mediators and positively to depression. That is, an
increased levels of role captivity are related to decreased levels in the mediators
and increased levels in depression. However, financial concern is not related to
the mediators, but it is positively related to depression. The mediator emotional
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84
support is related to the other mediator mastery. Finally, both mediators are negatively
related to depression. That is increases in the mediators are associated with decreases in
depression.
The results of the gay partners path analysis (Table 5 and Figure 3) partially
support the first hypothesis, that background characteristics affect caregiver risk for
depression. Age had a direct effect on depression, the older the caregiver the less
depressed. Age had numerous indirect effects on depression as shown in Figure 3. For
example, age had an indirect effect on depression with paths through role overload then
to role captivity and then to depression. Age had another indirect effect on depression
with a path through role overload. Additionally, age also had an indirect path through
ADLs to role overload through role captivity and finally to depression. Self-reported
health had a direct effect on caregiver depression through role overload. In other words,
poorer health led to higher risk of depression. Self -reported health had several indirect
effects on caregiver. For example, self reported health had a path that went through
role overload and then to depression, as well as to overload through role captivity and to
depression. That is, a gay partner with poor health experienced a greater sense of role
overload and role captivity which led to increased levels of depression. Income
indirectly effected depression, this path went through role overload. Those with lower
income experienced a greater sense of role overload and were at higher risk of
depression. This finding was partially consistent with the hypothesis that income would
indirectly effect depression. Nevertheless, it was expected that income would go through
financial concern and then to depression.
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Table 4. Gay Partners Correlation Matrix
1 2 3 4 5 6 7 8 9 10
1. Age 1.000
2. Hcallli -.020 1.000
3. Income .252*** .203** 1.000
4. ADLs .212** -.121 .090 1.000
5. Role
Overload
-.117 -.102 .098 .216** 1.000
6. Role
Captivity
-.153* .146* .126 -.046 .352*** 1.000
7. Financial
Concern
-.201** -.102 -.342*** -.021 .226** .073 1.000
8. Emotional
Support
-.016 .003 -.092 -.095 -.201** -.209** -.119 1.000
9. Mastery .004 .179* .109 -.027 -.205** -325*** -106 .254*** 1.000
10. Depression -.222** -.234** -.086 .177* .422*** .324*** .242** -.205** -.396*** 1.000
• p < .05; •* p < .01; *** p < .001
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Table 5. Gay Partners Standardized Regression Coefficients of all Paths
Dependent Variables
Independent
Variables
ADLs Role
Overload
Role Financial
Captivity Concern
Emotional
Support
Mastery Depression
Age .192** -.207** -.082 -.156*
Health -.131 -.109 -.012 -.178**
Income .069 .151* .102 -.345***
ADLs .233** -.136* -.083 -.009
Role
Overload
.371*** .242** -.104 -.063 .255***
Role
Captivity
.020 -.170* -.261*** .139*
Financial
Concern
-.085 -.051 .092
Emotional
Support
.180* -.055
Mastery -.242***
R2 .063 .100 .150 .192 .074 .149 .358
*p < .05; **p< .01; ***p < .001
OO
O N
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Figure 3. Results of Regression-Based Path Analysis for Gay Partners
Health
Income
-.156*
-.178**
Financial
Concern
242**
Role Captivity
/ ]
X 071
""
Role Overload
\
Mastery
\
V
c.261***
Depression
.255***
.242***
-.136* ' 170‘
.180*
ADLs
Emotional
Support
00
• p < .05; p < .01; “ ■ p< .001
88
The second hypothesis refers to the direct and indirect effects of primary
stressors on depression. As hypothesized ADLs had an indirect effect on
depression (Figure 3). This path went through role captivity to depression, as well
as through role overload to depression. In addition, ADLs had a path to role
overload through role captivity to depression. Role overload had a direct effect on
depression, in that, an increase in role overload put the gay partner caregiver at
risk for higher levels of depression. Role overload indirectly affected caregiver
depression, this path went to the secondary stressor role captivity to depression.
The results of the of the gay partners path analyses partially support the
third hypothesis, namely that role captivity directly and indirectly affect caregiver
depression (Figure 3). Role captivity directly affects depression, in that, the more
captive the caregiver felt in the role of caregiving, the more depressed he claimed
to be. Role captivity indirectly affected depression, this path went through
mastery and to depression, as well as, through emotional support to mastery and
finally to depression. In the gay partner sample, financial concern had no effect on
depression.
The fourth hypothesis applies to the stress mediators of mastery and
emotional support. This mediation hypothesis was partially supported by the
results of the path analysis (Figure 3). Mastery showed a direct affect on
depression. That is, the more mastery a gay male caregiver feels the less
depression he reports. Emotional support did not have a direct affect on
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89
depression, but rather had an indirect affect with a path through mastery to
depression. It appears from the gay partner path analysis that mastery had a
mediating affect on role captivity. Baron and Kenny, (1986) assert a three-variable
system, for mediation to occur, such that there are two casual paths going into the
outcome variable. For example, role captivity( the independent variable) has a
direct path to depression and a direct path to mastery (the mediator). There is also
a direct path from mastery (the mediator) to depression (the outcome variable).
This study used the recommendations from Baron and Kenny (1986) and
Rice, Ashby, and Slanely (1998) for testing mediation. Mediation requires the
manifestation of three effects. First, a significant association must occur between
the predictor (Role Captivity) and the mediator (Mastery). In tum, a relationship
must exist between the predictor and the outcome (Depression). Lastly, the
mediator must be significantly associated with the outcome, and the association
between the predictor and the outcome should considerably decrease when testing
this mediation effect. For example, high mastery could mediate the deleterious
effects of role captivity on depression, whereas low mastery might exacerbate the
effects of role captivity on depression. In order to test the mediation hypothesis,
two additional sets of regression analyses were performed, questions.
In the first examination, regression analysis was conducted to test the
relationship between role captivity and depression. In this analysis, role captivity
was regressed on depression. The results for this step indicated that role captivity
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90
accounted for a significant variation in depression, R2 = .105, F(2, 191) = 22.463,
p < .000. The significant standardized beta for this regression is B = .324, p <
.000. In the next step role captivity and mastery were regressed on depression.
The change in the amount of variance was significant, R2 = .199, F(2, 191) =
23.77, p < .000. The standardized beta for role captivity was B = .218 , which was
considerably reduced from the first regression. Thus, according to
recommendations by Baron and Kenny (1986) and Rice and colleagues (1998),
mastery seemed to mediate the relationship between role captivity and depression.
Anglo Women. The bivariate correlation of the variables in the path
analysis for Anglo women are displayed in Table 6. Looking at the background
characteristics, age is negatively correlated to role overload. It is interesting to
note that the background characteristics were not related to the objective stressor
ADLs. The background characteristics were not related to the secondary stressor
role captivity, but health and age were negatively related to the secondary stressor
financial concern. Health was negatively related to depression, that is, poorer
health is associated with increased levels of depression. As expected, the primary
stressor ADLs were positively related to role overload. In tum, the primary stessor
ADLs and role overload were positively related to role captivity. That is,
increased levels of ADLs are associated with increased levels of role overload and
role captivity; and increased levels of role overload are associated with increased
levels of role captivity. Role overload was positively related to financial concern.
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91
However, the primary stressors were not related to the mediators emotional
support and mastery. The secondary stressors role captivity and financial concern
were negatively related to both mediators emotional support and mastery; and
positively related to caregiver depression. That is, increased levels of role
captivity and financial concern were associated with lcwer levels in the mediators
and increased depression. Finally, mastery was negatively related to depression.
That is, lower levels of mastery were associated with increased risk of depression.
The results of the path analysis for the Anglo women partially support the
first hypothesis, that the background characteristics affect caregiver risk for
depression (Figure 4 and Table 7). Age and health directly effected depression.
That is, the higher the age of the caregiver the less depressed they reported being;
the poorer their health the more depressed. Income indirectly affected depression
in that, the path from income to caregiver depression went through the secondary
stressor financial concern and mastery.
The results of the path analysis for the Anglo women partially supported
the second the hypothesis (Figure 4). The secondary stressor of role overload did
not have an effect on caregiver depression directly, but rather indirectly, through
role captivity to depression. As hypothesized, ADLs had an indirect effect through
role overload to role captivity and to depression. That is, the caregiver with
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Table 6. Anglo Women Correlation Matrix
1 2 3
1. Age 1.000
2. Health -.270** 1.000
3. Income .019 .083 1.000
4. ADLs -.048 -.150 -.098
5. Role -.206* -.139 -.053
Overload
6. Role -.046 -.085 .036
Captivity
7. Financial -.103 -.176* -.242**
Concern
8. Emotional -.115 .097 .142
Support
9. Mastery -.224** .258** .148
10. Depression -.073 -.438***
I
o
'■ J
^ J \
* p < .05; ** p< .01; *** p< .001
4 5 6 7 8 9 10
1.000
.369*** 1.000
.264** .336*** 1.000
.130 .197** .164 1.000
.088 -.040 -.068 -259** 1.000
.045 -.109 -.204** -275** .361*** 1.000
.109 .269** .378*** .293** -.139 -.322*** 1.000
V O
ts>
93
greater ADLs experienced increased feelings of role overload, and this led to
greater feelings of role captivity, and, consequently, the caregiver experienced a
greater sense of depression.
The third hypothesis refers to the relationship between the secondary
stressors and caregiver depression. This hypothesis was also partially supported
by the results of the path analysis for the Anglo women (Figure 4). Role captivity
effected depression directly. That is the more captive a person feels in the role of
caregiver the greater the risk for depression. Role captivity did not indirectly
effect caregiver depression. Financial concern did not affect depression directly,
but did so indirectly, through mastery to depression.
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Figure 4. Results of Regression-Based Path Analysis for Anglo Women
191
389
-.224
-.180
266
-.230
.277
-.174
-.256
.335
.295
Age
Health
Income
ADLs
Financial
Concern
Emotional
Support
Mastery
Role Captivity
Role Overload
Depression
• p < .05; * * p < .01; * * * p <
.001
2
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Table 7. Anglo Women Standardized Regression Coefficients of all Paths
____________________Dependent Variables
Independent
Variables
ADLs Role Role Financial Emotional Mastery Depression
Overload Captivity Concern Support
Age -.092 -.230** -.125 -.191*
Health -.168 -.151 -.152 -.389***
Income -.083 -.003 .069 -.224**
ADLs .335*** .169 .144 .104
Role Overload .277** .110 -.030 -.040 .053
Role Captivity .117 -.054 -.168 .266**
Financial Concern -.256** -.180* .094
Emotional Support .295*** -.012
Mastery -.174*
R2 .038 .192 .140 .136 .082 .199 .384
* p < .05; ** p < .01; *** p < .001
v O
C /t
96
The fourth hypothesis concerns to the relationship of the mediators to depression.
This hypothesis was not confirmed. The mediators (emotional support and
mastery) did not buffer the relationship of primary or secondary stressors to
depressive symptoms in
Anglo female caregivers. However, mastery demonstrated a direct effect on
depression in that is, caregivers with high levels of mastery have low levels of
depression. Emotional support showed an indirect affect on depression through
mastery. That is, a caregiver with more emotional support had an increase sense
of mastery, and, in tum, the caregiver experienced lower levels of depression.
Latinas. The bivariate correlations of the variables included in the Latina
path analysis are shown in Table 8. Viewing first the background characteristics,
health is negatively related to the subjective primary stressor role overload. That
is, poorer health is associated with increased levels of role overload. In addition,
health is negatively related to depression, that is, poorer health is associated with
increased level of depression. Income is positively related to the secondary
stressors of role captivity and financial concern. That is, an increase in income is
associated with increases in both secondary stressors. As expected the primary
objective stressor ADLs is positively related to role overload. That is, an increase
in ADLs is associated to an increase in role overload. In tum, the secondary
stressor role overload is positively related to both secondary stressors role
captivity and financial concern; negatively related to the mediator mastery, and
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97
positively related to the outcome depression. That is, increased levels of role
overload is associated with increased levels in the secondary stressors; decreased
levels in mastery, and increased levels of depression.
Additionally for this group, an increase in financial concern is associated with
increased levels of depression. Finally, the mediator mastery is negatively related
to the outcome of caregiver depression, that is, increased levels of mastery are
associated with decreased levels of depression.
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Table 8. Latinas Correlation Matrix
1 2 3 4 5 6 7 8 9 10
1 . Age
1.000
2. Health -.143 1.000
3. Income
-.086 -.085 1.000
4. ADLs -.148 .003 -.033 1.000
5. Role Overload -.073 -.213** .085 .316*** 1.000
6. Role Captivity -.170* -.099 .355*** .155 .348*** 1.000
7. Financial
Concern
-.027 -.204* .221** .187* .307*** .348*** 1.000
8. Emotional
Support
-.058 -.019 .115 -.010 .029 -.001 -.181* 1.000
9. Mastery -.027 .337*** -.151 -.091 -.293*** -.296*** -.395*** .125 1.000
10. Depression
.036 -.253** .119 -.021 .265** .365*** .258** -.084 -.396*** 1.000
* p < .05; ** p < .01; *** p < .001
V O
00
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Table 9. Latinas Standardized Regression Coefficients of all Paths
Dependent Variables
Independent
Variables
ADLs Role Role Financial Emotional Mastery Depression
Overload Captivity Concern Support
Age -.157 -.086 .014 .073
Health -.024 -.193* -.117 -.118
Income -.051 .016
312***
.115
ADLs .304*** .074 .010 .023
Role Overload
291***
.192* .095 .196* .057
Role Captivity .233** .012 -.171* .240**
Financial Concern -.210* -.239** .025
Emotional Support .036 -.038
Mastery -.260**
R2 .025 .140 .205 .189 .041 .196 .249
* p < .05; ** p < .01; *** p < .001
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Figure 5. Results of Regression-Based Path Analysis for Latinas
.-.1 9 3
-.239
.192* <
.240
.233
.312
-.260
171
.291
196
-.210
.304
Health
Income
ADLs
Financial
Concern
Emotional
Support
Mastery
Role Captivity
Role Overload
* p < .05; * * p < .01; * * * p < .001
Depression
i
101
The third hypothesis refers to the relationship between the secondary
stressors and Latina caregiver depression. This hypothesis was also partially
confirmed by the results of the Latina path analysis (Figure 5). Role captivity
directly effected depression, in that higher levels of role captivity led to higher
levels of depression. Role captivity also indirectly effected depression with a path
through mastery to depression. The indirect path showed that more increased
levels of captivity led to decreased levels of mastery and increased levels of
depression. Financial concern contributed indirectly to depression but not directly
as hypothesized. The path went through mastery to depression, in that higher
levels of financial concern led to decreased levels of mastery and increased levels
of depression.
The results of the Latina path analyses also partially support the fourth
hypothesis (Figure 5). To test the stress mediators, mastery and emotional support
were used both as an intervening variable and as a dependent variable. This was
done in order to understand how the mediators will reduce stressors and mediate
their influence on depression. The data indicate that mastery mediates the effects
of role captivity (the independent variable) on depression (the outcome variable).
For example, high mastery could mediate the harmful effects o f role captivity on
depression, whereas low mastery might exacerbate the effects of role captivity on
depression. As with the gay partner sample analyses, two additional sets of
analyses were conducted on the Latina sample to explore the mediation effects. In
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102
the first examination, regression analysis was conducted to test the relationship
between role captivity and depression. In this analysis, role captivity was
regressed on depression. The results for this step indicated that role captivity
accounted for a significant variation in depression, R2 = .223, F(2, 149) = 22.94, p <
.000. The significant standardized beta for this regression is B = .365, p < .000. In the
next step role captivity and mastery were regressed on depression. The change in the
amount of variance was significant, R2 = . 199, F(2, 148) = 21.28, p < .000. The
standardized beta for role captivity was B = .270, p < .001 , which was reduced from the
first regression. As with the gay partners sample, mastery for the Latinas seemed to
mediate the effect of role captivity. Mediation in the Latina sample was confirmed by
applying the recommendations by Baron and Kenny (1986) and Rice and colleagues
(1998). However, emotional support was neither a mediator nor a predictor of depression
for the Latinas path analyses.
Comparison of the three groups
The over arching hypothesis examines the degree to which the stress process
model differs across the three groups of informal AIDS caregivers: Anglo gay partners,
Anglo women, and Latinas. Separate path analyses were conducted to examine the
degree to which the model differs across the three AIDS caregiving groups. The
comparison will examine the results of the path analysis of the three groups (Figures 3,
4, and 5). Tables of unstandardized regression coefficients of significant paths of each
group are utilized to examine across group comparison (Tables 10, 11, and 12). Pedhazur
(1982), suggests that most authors recommend that B’s (standardized beta weights) be
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103
used when the effects of different variables are compared within a single populaiton, but
that b’s (undstandardized beta weights) be used when comparing the effects of given
variables across populations. He also highlights that due to their relative stability,
unstandardized coefficients (b’s) directly translate into guides for policy and program
development decisions (Pedhazur, 1982). Program development and delivery of services
are important reasons for comparing these particular AIDS caregiving groups.
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Table 10. Gay Partners Unstandardized Regression Coefficients of Significant Paths
Independent
Variables
Dependent Variables
ADLs Role Role Financial Emotional Mastery Depression
Overload Captivity Concern Support
Age
Health
Income
ADLs
Role Overload
Role Captivity
Financial Concern
Emotional Support
Mastery
.010** -.015**
.004*
.295** -.23 1 "
.500"
-.014***
.302
**
-.093" -.149***
.188*
-.011*
-.136**
.263***
.107*
-.326***
* p < .05; ** p < .01; *** p < .001
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Table 11. Anglo Women Unstandardized Regression Coefficients of Significant Paths
Independent
Variables
Dependent Variables
ADLs Role Role Financial Emotional Mastery Depression
Overload Captivity Concern Support
Age
Health
Income
ADLs
Role Overload
Role Captivity
Financial Concern
Emotional Support
Mastery
-.011
* *
.378
-.011
* *
.377**
.158*' -.105*
.289**
-.252*
- .011*
-.295**
.225**
* p < .05; ** p < .01; *** p < .001
o
in
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Table 12. Latinas Unstandardized Regression Coefficients of Significant Paths
Dependent Variables
Independent
Variables
ADLs Role Role Financial Emotional
Overload Captivity Concern Support
Mastery Depression
Age
Health
Income
ADLs
Role Overload
Role Captivity
Financial Concern
-.129*
.290**
.014**
.428* .267*
.2311
.108*
-.128*
-.104**
.185**
Emotional Support
Mastery
.448**
p < .05; ** p < .01; ***p<.001
©
Os
107
The results of the three path analyses revealed similarities and differences
when comparing the groups on the first hypothesis. The gay partners and Anglo
women had similar results for the background characteristics, in that, older
caregivers were less depressed. For both groups the variables age and self-
reported health had a direct path to depression. The unstandardized regression
coefficient for the path from age to depression had the same impact for Anglo
women than gay partners ( b = -.011 and b = -.011), respectively. Additionally,
age had a similar result for gay partners and Anglo women, in terms of an indirect
effect on depression, through role overload to role captivity to depression. The
most striking comparison of the three models is that in the Latina path model the
variable age was not associated with any variables in the hypothesized model.
The direct path for self reported health for the Anglo women had a greater
impact on depression than for the gay partners (b = -.295 and b = -.136,
respectively). Self-reported health for the Anglo women had only direct path
effect on depression. For the gay partners, self-reported health had an direct and
indirect effect on depression. For the Latinas path analysis, self reported health
had only an indirect affect on depression. The Latinas and gay partners had the
same path from self reported health to role overload, with similar impact (b = -
.193 for Latinas and b = -.207). As hypothesized, income for all three groups only
had an indirect affect on depression. The indirect paths from income to depression
are different in each group as shown in the three path analyses (Figure 3,4, and 5
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108
respectively). The second hypothesis examined die direct and indirect affects of
primary stressors on depression. It was hypothesized that ADLs could have an
indirect affect on depression through role overload and the secondary stressor role
captivity. In addition primary stressor role overload would indirectly and directly,
through secondary stressors affect the levels of caregiver depression. In all three
groups, ADLs had an indirect affect on depression. The paths went through role
overload to role captivity to depression. The paths from ADLs to role overload all
had relatively high betas (gay partners b = .295, Anglo women b = .378, and
Latinas b = .290). The gay partner path model was the only model where ADLs
had an indirect affect on depression through role captivity. For role overload, the
gay partners and Latina models had comparable results in that role overload
affected both secondary stressors. Role overload had a greater impact on financial
concern for the gay partners than for the Latina caregivers ( b = .302, and b =
.267, respectively). All three groups had paths from role overload through role
captivity and then to depression. A significant finding indicated that in all three
groups, the burden of caregiving (ADLs) led to increased feelings of role
overload, and in tum, to increased levels of role captivity and greater risk of
depression. However, undstandardized regression coefficients revealed that role
overload had a greater impact on role captivity for gay partners than the other two
groups (gay partners b = .500, Anglo women b = .377, and Latinas b = .428). In
addition, role captivity had a greater impact on depression for Anglo women and
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109
the least impact on depression for gay partners ( b = .225, and b =.107,
respectively). Unique to the Anglo women sample, role captivity had only a direct
path to depression. The gay partners path analysis was the only one in which
showed role overload having a direct and indirect affect on depression. Here
again it seems that the path analysis of the gay partners was more similar to the
hypothesized path model for the primary stessors. The path analysis of the Anglo
women was the least similar to the hypothesized path model. However, all three
groups had paths from ADLs to role overload and then through role captivity to
depression.
The third hypothesis refers to the relationship to between the secondary
stressors and depression. As stated above, role captivity had a direct affect on
depression for all three groups. However, role captivity had an indirect affect for
the gay partners and the Latinas. This path from role captivity to depression went
through mastery. Financial concern did not affect depression indirectly or directly
in the gay partner analysis. In the Latinas and the Anglo women path analyses,
financial concern indirectly affected depression through mastery. In addition, for
both female groups financial concern influenced emotional support. However, for
the Latinas sample the path from financial concern to emotional support had no
effect on caregiver depression. The fourth hypothesis refers to the stress
mediators of mastery and emotional support, and the relationship between
primary and secondary stressors and depression. It was hypothesized that mastery
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110
and emotional support will reduce stressors and mediate their affect on
depression. The gay partners and Latinas had comparable results with mastery
mediating the secondary stressor role captivity. Mastery had a stronger impact on
depression for Latinas (b = -.448) and gay partners (b = -.326); for Anglo women
mastery had the weakest impact ( b = -.252). The comparison of the three path
analyses reveals that mastery mediates the relationship between role captivity (the
independent variable) and depression (the outcome variable) for the gay partners
and the Latinas. In fact, mastery was directly and significantly related to
depression for all three groups. However, mastery was not a mediation affect in
the results for the Anglo women. For all three group, emotional support did not
have a direct affect on depression, nonetheless, the data failed to support the
hypothesis that emotional support mediates the effects primary and secondary
stressors for all three groups.
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Ill
Chapter 5
Discussion
The findings clearly suggest the similarities and differences in stress
process models for these diverse groups of informal AIDS caregivers. These
findings also may be of significance for stress and coping literature on
consistencies and improvements in the stress process paradigm for AIDS
caregivers. Additionally the results may be meaningful in honing the design and
delivery of gender-specific and culturally-sensitive caregiving systems.
The background characteristics of gay partners and Anglo women were
directly related to depression (Figure 3 and 4). Health had an inverse relationship
to depression for these two groups, in that poorer health indicated an increased
risk for depression. These findings were consistent with the literature on
caregiving for older adults, for whom health was a significant predictor of stress
and depression (Schulz et al., 1995; Berkman et al., 1986; Heidrich and Ryff,
1993). The relationship of health as a predictor of depression is also consistent
with the literature on AIDS caregivers (Leblanc et 1994; Leblanc, 1997; Folkman
et al., 1994). It would seem likely that AIDS caregivers would be more anxious
about their health and that this would effect their levels of depression. For the
Latina sample, self- reported health was not directly related to depression;
although, self-reported health had a strong impact on role captivity, which, in
tum, predicted depression. Research of Latino/a populations has shown that the
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112
reporting of somatic symptoms can be an indicator of overall health status,
representing underlying depression (Garcia & Marks, 1989; Kolody, Vega,
Meinhardt, & Benussen, 1986; Magni, Rossi, Rigatti-Luchini, & Mersky, 1922).
Age also seems to be an important factor for gay partners and Anglo
women, that the younger the caregiver, the more depressed. This finding is
consistent with AIDS caregiver research findings on age ( LeBIanc, et al., 1998;
LeBlanc, 1995; Folkman et al, 1996). In the AIDS caregiving literature, age has
been used as an important predictor of psychological stress (Pearlin and Turner,
1994). As noted earlier, it is also believed that the age of AIDS caregivers has
special bearing on the stress of caregiving (Folkman, 1997; Pearlin and Temple,
1989; Pearlin & Turner, 1994). Acquiring the role of caregiving and experiencing
the attenuation of one’s social network are most common among older people. For
young adults, however, caregiving and the death of age-peers is more likely to be
“out of sequence” with expected life course and without anticipatory preparation
(Pearlin et al., 1990; Mirowsky and Ross, 1989; Rait; 1991). Out of all three
groups, the results of gay partner path analysis for the background characteristics
resembled the hypothesized model most closely. One reason for this, may be
because the majority o f stress and coping research on AIDS caregivers has been
based on samples of gay partners and gay men.
However, one o f the most interesting results o f this comparative analysis
is that age for the Latina sample had no impact on primary stressors, secondary
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113
stressors, or the outcome depression. This may be because caregiving for Latinas
is culturally expected for young women due to their values such as familismo.
Familismo corresponds to strong identification and attachment to the nuclear and
extended family as a whole. It is characterized by with powerful feelings of
loyalty, reciprocity and solidarity among family members (Marin & Marin, 1991).
Cultural difference may be why the gay partners and Anglo women path
models were more consistent with Pearlin’s conceptualizations of how
background characteristics effect the stress process. Pearlin’s model has been
developed on samples consisting mostly of Anglo Americans in samples of
caregivers for older adults and in samples AIDS caregivers. This bias suggest a
need for investigating the stress process in more diverse communities to
accommodate the cultural nuances in the caregiving needs of these populations.
As hypothesized, income had an indirect affect on depression through
primary and secondary stressors for all three groups (Figure 3 ,4 and 5). However,
for each group, income affected different primary and secondary variables. These
findings, showing income’s relationship to depression are consistent with
dementia caregiving ( for a review of literature see Schulz et al., 1995). Turner
and Catania (1977) found similar findings in a probability sample of informal
AIDS caregivers that showed lower income as a predictor of increased burden.
This is also consistent with research on Latino women that found socioeconomic
status to be closely related to depression (Polich & Gallager-Thompson, 1997).
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114
For example, in the Latina sample, income seems to have a strong impact on role
captivity, which, in turn, affected the risk of depression.
With regard to the stressors, it appears that ADLs, role overload, and role
captivity are important in understanding the stress process in gay partners, Anglo
women, and Latinas. In all three groups of caregivers, the objective primary
stressor ADLs was significantly related to the subjective stressor role overload.
These results are similar to other research on caregivers in general (Pearlin, 1990;
Clair et al., 1995; Gatz et al., 1990; Schulz et al., 1990) and research on AIDS
caregivers in particular (Pearlin, 1990; Pearlin et al., 1994; Leblanc et al., 1977).
In turn, the primary subjective stressor of role overload had a direct impact on the
secondary subjective stressor of role captivity in all three groups. This
relationship has been supported by past research ( LeBlanc et al., 1997; Pearlin, et
al., 1977; Lawrence et al., 1998). In addition, role captivity was significantly
related to depression in all three groups. These findings indicate that increased
caregiving demand (ADLs) leads to role overload, which leads to feelings of role
captivity, and that, in turn, leads to depression. These finding are consistent with
past research on caregiving for older adults (Lawrence et, 1998) and AIDS
caregivers ( LeBlanc et al., 1994; LeBlanc et al., 1997; Pearlin et al, 1997).
Pearlin’s stress process paradigm seemed to capture the caregiving burdens and
stressors and how they affect depression in all three diverse groups o f AIDS
caregivers.
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115
The relationships of ADLs, role overload, and role captivity to depression
seems to bridge the gender, culture, socioeconomic, and sexual orientation gap.
The relationship of these primary and secondary stressors to depression seem
similar for all three samples, and are consistent with Pearlin’s theoretical model
and supporting literature (Figure 3, 4 and 5). However, the secondary stressor of
financial concern had no impact on depression for the gay partners, but had an
indirect affect for Anglo women and Latinas. This finding may represent the
gender difference in income between the caregivers. For both Anglo women and
Latinas, financial concern had a relationship to mastery, which, in turn, affected
depression.
The conceptual model was based on the assumption that the stress and
coping sequence of AIDS caregivers may differ because of mediating influences
on the stress process (Pearlin, 1989; 1991; 1992; 1993; Pearlin & Aneshensel,
1997). Mastery had mediating effects for the gay partners and Latinas but not for
the Anglo women. The mediating effects of mastery are consistent with the
literature (Miller et al., 1995; Hrabra et al, 1997; Pearlin et al., Roberts et
al.,1994). The mediating effects of mastery may be visible because gay men and
Latinas are more marginalized than Anglo women, and, therefore, mastery
exhibits a greater impact as a mediator. The direct effect of mastery on depression
for the Anglo women was also consistent with past research (Copple et al, 1985;
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1 1 6
Franks & Stephens, 1992; Skaff & Pearlin, 1992). This finding again highlights
the need for further research on the mediating effects of the stress process for
diverse populations.
One possible explanation for mastery not playing a mediating role for
Anglo women is that the relationship between caregiving and well-being is that of
selection; that is, women, with particular levels of well being are more likely to
become caregivers (Moen et al., 1995). Thus, the idea of being counted on as
caregiver may produce a sense of significance and mastery and in some situations,
and a sense of burden, helplessness, and strain in others. Women, more than men,
tend to respond to interdependency by altering their own situations to fit the needs
of others (Moen et al, 1977). This emphasizes the importance of historically and
culturally grounded prescriptions regarding role primacy and expectations
(Anehensel and Pearlin, 1987; Menaghan, 1989; Moen, 1992; Thoits, 1992). In
general, female caregivers are more likely to use a variety of coping styles and
more effectively mobilize social support systems.
It is quite apparent from the results of these comparative regression-based
path analyses that these three groups have both similar and different needs in the
caregiving process. Research on informal AIDS caregiving continues to
underscore two central themes: caring for loved ones with AIDS is a complex and
demanding process, and informal AIDS caregivers vary in their resilience and
resourcefulness. Together, these themes create a challenge to researchers and to
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investigators developing intervention strategies aimed at reducing the negative
consequences of AIDS caregiving. In addition, the differential affects of the
caregiving stress process need to translate into programs that are attuned to these
caregivers different needs.
These findings further indicate the need for culturally sensitive services
for gay partners, Anlgo women, and Latinas to combat depression caused by
caregiving. In order to bridge the gap between theory, research, and practice, one
must address the point of intervention in the stress process model for AIDS
caregivers.
In all three groups, an increase in the levels of ADLs was associated with
role overload and, in turn, led to greater role captivity and then to the risk of
depression. The three path analyses suggest that a sense of overload and captivity,
experienced by those who have difficulty maintaining pace with the demands of
caregiving, contributes to greater risk of depression. It is interesting to note that
role overload and role captivity are defined as hardships rooted in the situation of
caregiving (Pearlin et al, 1997; Lawrence et al., 1998). The results demonstrate
that all three groups were affected by the perceived difficulties and stress of the
caregiving role which may increase the levels of depression. This finding implies
that each group of AIDS caregivers could benefit from an intervention before the
caregiver starts to feel overloaded, captive and depressed. In past, caregiving
interventions were developed in two specific areas (Yates, et al., 1999): respite
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118
services for caregivers (Montgomery, 1992; Cox, 1997) and services provided in
areas of caregiver support (Gatz, Bengtson, & Blum, 1990). There has been some
possible success in the area of AIDS caregiving such as support groups and
respite care (Pomeroy, Rubin, & Walker, 1996;); however, these interventions
tend to address the issues of caregiving once the caregiver is already feeling
overload, captive, and depressed. McKinley (1995, 1996), a proponent of
preemptive prevention, believes that the point intervention would focus on the
contributing factors to burden, and attempt to provide services in ways that
prevent the onset of stressors such as role overload and role captivity. In this case,
services could be directed at the level of the primary objective stressor ADLs.
Strategies developed in order to prevent role overload and role captivity may be
addressed by case management services, by technical training to relieve some the
objective stressors such as ADLs, by home respite care, and by caregiving support
buddies that culturally match the caregiver.
However, in Latino families, one is expected to rely first and foremost on
the family for assistance, hence, one is not expected to go outside the family for
services and support (Marin and Marin, 1991). In addition, the Latino family as a
whole is affected and seeks and requires services (Martinez, 1978; Hu &
Showden, 1992; Martinez, 1993). In order to be effective, programs serving
Latina AIDS caregivers will need to attend to the family as a whole (Land and
Hudson, 1999). Services for Latina caregivers should be developed by using
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119
natural neighborhood helping networks or neighborhood service providers, who
have been educated about AIDS caregiving, and who can support the whole
family.
In addition to the direct paths o f mediation as hypothesized, there are also
indirect mediating effects through mastery for each group of caregivers. For
example, the gay partner path analysis has a path from role captivity to emotional
support to mastery to depression; the Anglo women path analysis has a path from
financial concern to emotional support to mastery to depression; and the Latinas
path analysis has a path from the role overload to the role captivity to mastery to
depression. These indirect mediating effects through mastery, give further
support to the mediating effects of mastery in AIDS caregivers.
These findings suggest that mastery might be an effective focal point of
intervention. In the past, mastery has been regarded as a relatively stable concept,
but there is evidence to suggest that global mastery is susceptible to change
(Bandadura, 1977; Lachman, Ziff, & Spiro, 1994). For some caregivers with a
higher sense of mastery, the perception of role captivity and depression were
lower. These results suggest the need to develop intervention strategies that
increases a caregiver’s sense o f mastery. Such services might be provided in
individual or group settings, and would consist of supportive educational
approaches to enhance caregiving skills, HIV/AIDS information to empower
caregivers, and support their existing skills, masteries, knowledge and cultural
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120
customs. This includes helping gay partners and Latina caregivers increase their
sense of self-efficacy to cope successfully with stressful circumstances. All of
these services would be created with a knowledge of and sensitivity to culturally-
specific issues influencing self-concept, such as homophobic issues among gay
partners, sexism among women, and racism and poverty among Latinas.
For all three groups, case managers can also help guide caregivers through
the provisions of psychoeducational programs. Two experimental studies
targeting caregivers of patients with Alzheimer's disease have demonstrated that
psychoeducational programs have positive effects in reducing depressive
symptomatology (Greene & Monahan, 1989; Kahan et al., 1985). Professionals
can play an important role in helping caregivers with the tasks of caregiving and
training caregivers in stress management techniques. In addition, supporting help
from family members, friends and other agency professionals may relieve
caregiver burden such as ADLs.
AIDS caregivers have the additional stresses of social isolation, stigma,
disenfranchisement, lack of spiritual support, fear of contagion, homophobia,
illness-related complications, and survivor guilt (Doka, 1989; Wardlaw, 1994;
Dean, Hall, and Martin, 1988). In addition to the isolation of AIDS stigma, Latina
caregivers have the added stress o f acculturation and they are often not
knowledgeable about AIDS services (Land and Hudson, 1997). Case managers
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1 2 1
can be supportive both to caregivers and PWAs by helping them maintain and/or
strengthen their social networks to relieve the social isolation and related stresses.
It is also interesting to note that all three groups of caregivers had similar
levels of depression. This finding is surprising, considering that available AIDS
programs and services were developed by gay service providers for gay men
suffering from this disease. It would seem, then, that gay partners would have
more support and this would buffer the effects of depression. However, a
component such as homophobia and its effects on gay men, ranging from
rejection from family and friends to institutionalized homophobia, may have been
a contributing factor in depression. In addition, overload, health, and fatigue may
also contribute to depression, and chronic conditions such as these are difficult to
treat. Further, the vulnerability of the gay caregiver to either the threat of
becoming infected or their own disease progression creates additional stress
(Turner et al., 1994).
It is also surprising that the Latinas’ depression level was not significantly
greater that the other two groups, considering that group’s poverty levels. This
finding may have occurred because the BSI scale was collapsed in order to
compare depression scores with the other two groups, in which depression was
measured on the Hopkins Symptom check list, a much older version of the BSI.
Thus, the collapsed BSI may have been slightly less sensitive than the original
scale in the comparison analysis. In fact, fifty percent of the Latina AIDS
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122
caregiver sample reached clinical cutoff levels for depression (Land and Hudson,
1999). It is apparent that all three groups are in need of stress-relieving
interventions, culturally specific and specially designed for AIDS caregiving.
Further, all three caregiving groups are in need for mental health services that are
culturally specified to treat depression and related symptoms.
Since Latino/a cultural values are deeply entrenched, the role of caregiving
and interventions designed to lessen its stresses will need to attend to these values
(Land and Hudson, 1998). Both income and self-reported health had a direct
affect on stressors and an indirect effect on depression (Figure 5). The results shed
additional light on the fact that these Latina caregivers have more health problems
and live at poverty levels with an annual income below $7000. Income had strong
impact on role captivity, which then led to depression. Health impacted role
overload, which, in turn, went through role captivity to depression; and from role
overload to mastery, then to depression. This finding is consistent with past
findings. Vega (1991) found that minorities disproportionately experience health
problems because of low socioeconomic status, and hence suffer psycho-
physiological distress and depression as a consequence. Moreover, Latinos
continue to be one of the groups with high HIV infection rates. These high
infection rates translates to Latinas assuming the role of AIDS caregivers, despite
the fact that an increasing number of them are also HIV infected. Almost 40% of
the Latina sample are HIV seropositive, thus carrying the dual status of caregiver
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123
and patient. In turn, the health status of Latina caregivers pointed to the feelings of
overload and then role captivity. Income was related to role captivity leading to
depression. The strain of poor health and extremely low annual income lend
credence to need for direct medical and financial assistance programs for such
stressed caregivers. Interventions may be designed to partially relieve the Latina
AIDS caregiver from daily burdens such as ADLs. In turn, these caregivers suffer
from role overload, role captivity and financial concern. In addition, Latino/a
AIDS service programs should include culturally sensitive in-home respite care,
buddy programs, stress reduction programs, peer counseling, (Land & Hudson,
1999) child care, transportation services, food banks, and educational services.
These services and programs require gender and cultural sensitivity to help-
seeking and caregiving behaviors (Land & Hudson, 1999).
Implications for Future Research
Future studies should examine different relationships with better, more
culturally, gender-sensitive measures of caregiving, stress, and well-being. By
identifying factors and conditions that influence the well-being o f informal
caregivers, the present research not only addresses the relationship o f stressors
unique to AIDS caregiving, but sheds some light on the similarities and
differences across diverse populations. This study confirms the importance of
investigating how the stress process of caregiving varies across cultures and
ethnicities. The data reveals that the gay partners path analysis is most similar to
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124
the research hypothesized model. This comparison study highlights the gaps in
research on informal AIDS caregivers with gender, ethnic and cultural
differences, which has important implications for social work. Further studies and
service research need to expand on the differences between these three groups and
how gender, culture, ethnicity and sexual identity affect this population of
caregivers.
Conclusion
The ecological or life model emphasizes the locus of social work
intervention as the interface between people and environments (Gemain,
1979;Germain and Gitterman, 1980). This social work model both parallels and
contributes to the increased understanding of the person-situation transaction, and
addresses environmental improvements by understanding them within a
psychosocial point of view (Gemain and Gitterman, 1976). Germain explains that
“ ecology seeks to understand the transactions that take place between
environments and living systems and the consequence of these transactions for
each” (p.59). This model describes the goal of social work as maintaining,
restoring, enhancing social functioning through the improvement of individual
coping and adaptation and through environmental enhancement. Pearlin’s stress
process model for caregivers provides social work with a paradigm that addresses
many stressors from an ecological perspective. It draws on background
characteristics, primary and secondary stressors, and mediators (resources) to
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125
understand the well-being of caregivers. By including background characteristics
and different levels of stressors, Pearlin’s stress process model takes into account
the biopsychsocial and cultural influences. As Pearlin et al. (1997) propose, the
affect of ascribed and achieved statuses such as ethnicity, age, gender, and
socioeconomic status are likely to be “threaded throughout the distress process”
(p.36). As with the ecological model, Pearlin’s model attributes a prominent role
to the stressful environmental influences as well as addressing the individuals
stressors and coping resources.
This study and other recent caregiving studies have advanced and
extended stress and coping models in ways that support the need for further
research on diverse AIDS caregivers. The findings of the current study are
consistent with what others have found in researching AIDS caregivers. Pearlin’s
stress and coping paradigm was used as a guide to see if there are unique
predictors and effects on well-being in these groups. Indeed there were differences
that highlight the need for future research and program development. This study
provides further evidence that informal AIDS caregivers cannot be treated as a
homogeneous group. Intervention strategies must be tailored more specifically to
each group to enhance the caregiving process and alleviate the damaging effects
of this chronic, trying experience.
Finally, these results further support the issues concerning the sustenance
and longevity of this system of informal support that remains an important
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126
component in the struggle against AIDS (Pearlin et al., 1994; Turner et al., 1994;
Folkman, 1998). Not only are large numbers of caregivers experiencing a
deterioration in their own well-being and health due to HIV and AIDS, but also
their roles as caregivers exacerbate their moods, and consequently, their ability to
endure as caregivers (LeBlanc et al., 1997). AIDS is now considered a chronic
illness requiring in-home care and management. In order to preserve the
effectiveness and integrity of our formal health care system by relying on informal
AIDS caregivers, one must consider the cost of the services caregivers need who
are themselves struggling to maintain their own emotional health.
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127
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APPENDIX
Scales of Path Variables used in the Study
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AGE
What is your date o f birth?
SELF-REPORTED HEALTH
Overall, how would you rate your health? Would you say it is:
Response Categories:
(5) Excellent
(4) Very Good
(3) Good
(2) Fair
(1) Poor
fNCOME
We’d like to get an idea of your income. Please include just your own personal
income from all sources in the past twelve months, for example your wages,
interest, and dividends.
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157
IADL HELP PROVIDED BY CAREGIVER (Lawton & Brody, 1969)
Next I’d like to ask about a number of ordinary daily activities with which ( )
may need help. First I'd like to ask you about different household chores. Please
tell me if in the past few weeks he has needed any help with these things.
[IF YES], how much do you personally help with:
1. Housework/housecleaning
2. Shopping for food
3. Cooking/preparing food
4. Laundry
5. Transportation to where he needs to go
ADL HELP PROVIDED BY CAREGIVER (Katz et at., 1963)
Next I'd like to ask about help with daily personal care. Please tell me if in the
past few weeks he has needed any help with these things.
[IF YES], how much do you personally help with:
1. Eating
2. Bathing/showering/washing hair
3. Moving around/walking
4. Dressing/undressing
5. Brushing teeth/hair
6. Getting in/out of bed
7. Going to the bathroom
Response Categories:
(4) All of it
(3) Much of it
(2) Some of it
(1) None of it
If Respondent answered that no help was needed by the PWA, a value o f 1 may be
assigned to reflect that no help was provided.
In Family Time 1 and in Non-Familv & Family Continuing Care Interviews:
Item change in ADL help above:
7. Using the toilet or bedpan
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158
MANAGEMENT HELP PROVIDED BY CAREGIVER
MIADL (4 items) Alphas: Tl = 78 CC2 = 77 BR2 =N/A CC3=.xx BR3 =N/A
FT1=.B1 FCC2=. 85 FBR2=N/A FCC3=.xx FBR3=N/A
Caregivers may help to manage different affairs of the person for whom they are
caring. Please tell me if in the past few weeks he has needed any help with these
things.
[IF YES], how much do you personally help with:
1. Managing his financial affairs
2. Managing his legal affairs
3. Dealing with his doctors, nurses, or clinic staff
4. Keeping in touch with his family or friends
Response Categories:
(4) All of it
(3) Much of it
(2) Some of it
(1) None of it
If Respondent answered that no help was needed by the PWA, a value o f 1 may be
assigned to reflect that no help was provided.
In Family Time 1 and Family Continuing Care Interviews:
4. Keeping in touch with other family members or friends
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159
FINANCIAL WORRIES
People have different financial concerns. How concerned are you about:
a. Being forced to move from your home
b. Having to spend all your income
c. Being in debt
d. Your ability to meet future medical costs
Response Categories:
(4) Very
(3) Somewhat
(2) Just a little
(1) Not at all
If Respondent answered that an item did not apply to them, a missing value may
be assigned.
2. How difficult is it for you to meet the monthly payments on your bills?
Would you say:
Response Categories:
(4) Very difficult
(3) Somewhat difficult
(2) Just a Little difficult
(1) Not at all difficult
OVERLOAD
Here are some statements about the effort it takes to do the things you do.
How strongly do you agree or disagree with the following statements?
1. You are exhausted when you go to bed at night
2. You have more things to do than you can handle
3. You don't have enough time just for yourself
4. No matter how much you do, you're never able to finish what needs to be
done
Response Categories:
(4) Strongly agree
(3) Agree
(2) Disagree
(1) Strongly disagree
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160
ROLE CAPTIVITY
Here are some thoughts and feelings people sometimes have about the job they
are doing as caregivers. How much do you:
1. Wish you were free to lead a life of your own
2. Feel trapped by (__________)'s illness
3. Wish you could just run away
Response Categories:
(4) Very Much
(3) Somewhat
(2) Just A Little
(1) Not At All
EXPRESSIVE SUPPORT
Next I'd like to ask some questions about the types of support you may get from
other people. Thinking about people you know, please indicate the extent to
which you agree or disagree with the following statements.
1. There is really no one who understands what you are going through (Reversed)
2. The people close to you let you know that they care about you
3. You have someone in whose opinions you have confidence
4. You have someone that you feel you can trust completely
5. You have people around you who help you to keep your spirits up
6. There are people in your life who make you feel good about yourself
7. You have at least one friend or relative you want to be with when you are
feeling down or discouraged
Response Categories:
(4) Strongly Agree
(3) Agree
(2) Disagree
(1) Strongly Disagree
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1 6 1
SELF MEASURES - (Continued)
MASTERY (Peartin & Schooier, 1978)
I would like to ask some additional questions about how you see yourself as a
person.
How strongly do you agree or disagree with each o f the following statements?
1. There is really no way I can solve some of the problems I have (Reversed)
2. Sometimes I feel that I'm being pushed around in life (Reversed)
3. I have little control over the things that happen to me (Reversed)
4. I can do just about anything I really set my mind to do
5. I often feel helpless in dealing with the problems of life (Reversed)
6. What happens to me in the future mostly depends on me
7. There is little I can do to change many of the important things in my life
(Reversed)
Response Categories:
(4) Strongly Agree
(3) Agree
(2) Disagree
(1) Strongly Disagree
GENERAL PSYCHOLOGICAL SYMPTOMS (Derogatis et at., 1971)
Next I'd like to ask how you have been feeling about things in the past week.
On how many days in the past week did you:
DEPRESSION (Low Affect)
1. Lack enthusiasm for doing anything
2. Feel bored or have little interest in doing anything
3. Cry easily or feel like crying
4. Feel downhearted or blue
5. Feel slowed down or low in energy
6. Feel that everything was an effort
BSI Depression Scale for Latina Sample
1. Thoughts of ending your life 4.
2. Feeling lonely 5.
3. Feeling blue 6.
Feeling no interest in things
Feeling hopeless about the future
Feeling worthlessness
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University of Southern California Dissertations and Theses

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Asset Metadata

Creator Stiefel, Burton Matthew (author)

Core Title Comparative analysis of the stress process in AIDS caregivers: Gay male partners, Anglo women, and Latinas

School Graduate School

Degree Doctor of Philosophy

Degree Program Social Work

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag OAI-PMH Harvest,Psychology, clinical,Social Work,sociology, individual and family studies

Language English

Contributor Digitized by ProQuest (provenance)

Advisor Land, Helen M. (committee chair), [illegible] (committee member)

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c16-181581

Unique identifier UC11328613

Identifier 3054905.pdf (filename),usctheses-c16-181581 (legacy record id)

Legacy Identifier 3054905.pdf

Dmrecord 181581

Document Type Dissertation

Rights Stiefel, Burton Matthew

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the au...

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus, Los Angeles, California 90089, USA