Clinical Scholarship

Concepts in Caregiver Research

Chantal K. Hunt

Purpose: To clarify and delineate conceptualizations of the effects of caregiving for nursing
research and practice with family caregivers.
Organizing Construct: The biopsychosocial (psychosocial and physiological) sequelae, both
negative and positive, associated with providing care for a relative or friend with a chronic
illness.
Methods: Literature reviewed was obtained via searches of CINAHL, MEDLINE, and PsycInfo
computerized databases through mid-2002. Key words for the searches were caregiver,
caregiving, family caregiving, caregiver burden, and caregiver appraisal. Reports of both
earlier reviews of literature and original research were included.
Findings: Negative concepts included caregiver burden, hassles, strain, and stress. Positive
concepts included caregiver esteem, uplifts of caregiving, caregiver satisfaction, finding or
making meaning through caregiving, and gain in the caregiving experience. A neutral concept
for describing the caregiving process is caregiver appraisal. Although earlier studies were
focused on negative aspects of caregiving, more recent research has also included positive
aspects.
Conclusions: More attention should be given to (a) gender and cultural differences in caregiving,
(b) development of flexible interventions, and (c) the biophysical sequelae of caregiving.

JOURNAL OF NURSING SCHOLARSHIP, 2003; 35:1, 27-32. ©2003 SIGMA THETA TAU INTERNATIONAL.

[Key words: caregiver, caregiving, caregiver burden, caregiver appraisal, concept analysis]

* * *

T
he presence of multiple terms used to describe the
effects of caregiving may lead to confusion in
synthesizing caregiving literature. Many investigators
have documented the negative biopsychosocial effects
associated with providing care for a relative or friend. These
negative effects of caregiving have been conceptualized in
many ways in the literature. Common concepts include:
caregiver burden (Zarit, Reever, & Bach-Peterson, 1980)
caregiver strain, (Archbold, Stewart, Greenlick, & Harvath,
1990) and caregiver stress (Nolan, Grant, & Ellis, 1990;
Pearlin, Mullan, Semple, & Skaff, 1990). Other researchers
have examined caregiving from more positive or neutral
perspectives. For example, positive aspects of the caregiver
experience have been conceptualized as caregiver esteem
(Given et al., 1992; Nijboer, Triemstra, Tempelaar,
Sanderman, & Van den Bos, 1999b; Nijboer, Tempelaar,
Triemstra, Van den Bos, & Sanderman, 2001), uplifts of
caregiving (Kinney, Stephens, Franks, & Norris, 1995;
Wallsten & Snyder, 1990), caregiver satisfaction (Lawton et
al., 1991), finding or making meaning through caregiving
(Ayres, 2000; Farran, Miller, Kaufman, Donner, & Fogg, 1999;
Farran, 1997; Farrran, Miller, Kaufman, & Davis, 1997;
Folkman, 1997), gain in the caregiving experience (Kramer,
1997a; 1997b), and caregiver appraisal (Lawton, Kleban,
Moss, Rovine, & Glicksman, 1989; Oberst, Gass, & Ward,
1989).
Understanding the concepts related to caregiving experiences
and the relationships among them can enable nurses to better
address the needs of caregivers. Therefore, the aims of this
analysis are to identify the competing conceptualizations of
the effects of caregiving in an effort to clarify and delineate
useful concepts for nursing research and practice with people
providing care to chronically ill family members.
Methods
Literature reviewed was obtained via searches of CINAHL,
MEDLINE, and PsycInfo computerized databases completed
Chantal K. Hunt, RN, MS, Epsilon , Doctoral Candidate, The Ohio State
University, Columbus, OH. This work was supported by a predoctoral
fellowship from the Walther Cancer Institute. Correspondence to: Ms.
Hunt, Ohio State University, College of Nursing, 1585 Neil Avenue,
Columbus, OH 43210. E-mail: hunt.61@osu.edu
Accepted for publication July 23, 2002.

Journal of Nursing Scholarship First Quarter 2003 27

Caregiver concepts
between January 2000 and June 2002. Included are theoretical,
research (qualitative and quantitative), and review articles
from 1980 through mid-2002 that provided useful definitions
or conceptualizations of caregiving terms. In addition to the
database search, citations were obtained from the reference
lists of articles already located in order to obtain classic works
by the original author(s), and to add to the completeness of
the database for the review. A total of 56 sources were used
in completing this review.
Negative Conceptualizations of Caregiving
Caregiver Burden
A caregiver is an unpaid person who helps a person with
physical care or coping with disease (Hileman, Lackey, &
Hassanein, 1992). Similarly, Pearlin and colleagues defined
informal caregiving as, “Activities and experiences involved
in providing help and assistance to relatives or friends who
are unable to provide for themselves” (1990, p. 583). The
Merriam-Webster Dictionary (2001) definition of caregiver
is “A person who provides direct care as for children or the
chronically ill.” “Burden” is defined in the same source as,
“Bearing of a load” or “Something that is oppressive or
worrisome.” Therefore, caregiver burden could be stated as
the oppressive or worrisome load borne by people providing
direct care for the chronically ill.
Many definitions of caregiver burden have been posited in
the literature. Caregiver burden may be defined as the
consequences of the activities involved with providing necessary
direct care to a relative or friend that result in observable and
perceived costs to the caregiver (Jones, 1996; Maurin & Boyd,
1990; Nijboer, Triemstra, Tempelaar, Sanderman, & Van den
Bos, 1999a; Nolan et al., 1990). It is the state resulting from
necessary caring tasks or restrictions that cause discomfort for
the caregiver (Zarit et al., 1980), or, “The negative subjective
experience of the caregiver” (Chwalisz, 1996). Braithwaite (1996)
defined caregiver burden as the extent to which meeting
caregiving demands conflicts with basic needs of the caregiver.
Finally, caregiver burden may be defined as “An external
demand or potential threat that has been appraised as a stressor”
(Lawton et al., 1989, p. 61).
The idea of observable versus perceived costs relates to a
commonly accepted difference between subjective and objective
types of caregiver burden. Early conceptualizations of caregiver
burden failed to distinguish between these conceptually distinct
domains (Zarit et al., 1980). Objective burden is the observable,
concrete, tangible cost to the caregiver resulting from the loved-
one’s illness (Jones, 1996; Maurin & Boyd, 1990). Subjective
burden refers to the positive or negative feelings that may be
experienced when giving care (Nijober et al., 1999b). Subjective
burden may also be defined as the person’s appraisals of the
situation (Maurin & Boyd, 1990). Research has indicated that
caregivers who report a larger amount of subjective burden are
at higher risk for negative health sequelae such as depression,
and that this subjective aspect of burden is important in predicting
outcomes (Given et al., 1992; Nijboer et al., 1999b; Weitzner,
Jacobsen, Wagner, Friedland, & Cox, 1999).
28 First Quarter 2003 Journal of Nursing Scholarship
Hassles of Caregiving
The concept “hassles” has been examined regarding
caregivers along with the concept “uplifts” (Kinney &
Stephens, 1989; Kinney et al., 1995). Hassles have been
defined as minor events appraised as threatening to a person’s
well-being, or as annoying or troublesome concerns (Lazarus
& Folkman, 1984; Merriam-Webster, 2001). Hassles may
have little or no influence individually. However the
accumulation of numerous hassles might have significant
effects on health. In other words, the effect of these minor
stressors might be cumulative, producing chronic stress for
the affected person. Hassles are the actual stressors of being
a caregiver, such as assistance with activities of daily living
(ADL), which must be appraised by the caregiver as being a
hassle to exert negative effects (Kinney & Stephens, 1989).
Caregiver Strain
“Strain” has several definitions. It is, “an act of straining
or of being strained: as excessive or difficult exertion or
labor,” “excessive physical or mental tension,” or “an unusual
reach, degree, or intensity” (Merriam-Webster, 2001). Thus,
caregiver strain might be stated as the unusually excessive
physical or mental exertion required of, and the resultant
tension experienced by persons providing direct care for
chronically ill people.
In the caregiving literature, caregiver strain has been defined
as both a stressor and as perceived stress. For example, Pearlin
(1994) defined it as “Enduring problems one experiences as
an incumbent of a particular role or status” (p. 10). It exists
because of the occurrence of simultaneous multiple demands.
Others have described caregiver strain as the effects of
caregiving on the caregiver (Ory, Hoffman, Yee, Tennstedt,
& Schulz, 1999). Strain has also been referred to as the “felt
difficulty in performing the caregiver role” (Archbold et al.,
1990, p. 376).
Caregiver Stress
Dictionary definitions of stress are “constraining force or
influence,” “a physical, chemical, or emotional factor that
causes bodily or mental tension and may be a factor in disease
causation,” and “a state resulting from stress—especially one
of bodily or mental tension resulting from factors that tend to
alter existent equilibrium” (Merriam-Webster, 2001).
Therefore, like strain, stress can be seen as both a cause and
result of a phenomenon—such as caregiving—that alters
equilibrium. Cohen and colleagues defined perceived stress
as, “The degree to which situations in one’s life are appraised
as stressful” (Cohen, Kamarck, & Mermelstein, 1983, p.387).
Nolan and colleagues (1990) defined caregiver stress as the
result of a cognitive imbalance between the perceived nature
of the demand and the perceived capabilities of the person.
This definition was based on a transactional view of stress as
described by Lazarus and Folkman (1984). From the
transactional perspective, stress is a process rather than merely
a response to an environmental stimulus. This definition of
stress is focused on relationships among the person, his or her
characteristics, and the environmental event presented. The

authors defined psychological stress as, “A particular
relationship between the person and the environment that is
appraised by the person as taxing or exceeding his or her
resources and endangering his or her well-being” (p.19). From
this perspective the subjective or perceived stress is more
important than is the actual stressor.
All of the above concepts indicate a distinction between
objective and subjective aspects of caregiving. Caregiver
burden, hassles, strain, and stress all indicate a negative
connotation to being a caregiver, and thus an imbalance
between demands and the caregiver’s ability to cope with the
demands. Caregiver stress and subjective burden might result
from caregiver strain, hassles, or objective burden. The
caregiver’s appraisals of the hassles, strains, or objective
burdens of caring are the basis of the caregiver’s perceived
stress or subjective burden.
Positive Conceptualizations of Caregiving
Although many researchers have agreed that caregiving is
a multidimensional construct, many continue to examine only
the multiple negative dimensions while ignoring the positive
aspects (Kramer, 1997a; Morano, 2001). However, several
researchers have demonstrated the presence and influence of
positive aspects of caregiving.
Caregiver Esteem
Caregiver esteem is the extent to which performing
caregiving enhances the caregiver’s self-esteem. Self-esteem
is the confidence or satisfaction one has for oneself (Merriam-
Webster, 2001). Therefore caregiver esteem is the confidence
or satisfaction caregivers feel as a direct result of caregiving.
Given and colleagues (1992) found that caregiver esteem was
inversely related to depression in samples of caregivers of
both elderly and cancer patients. Nijboer and colleagues
(1999a; 1999b) found that caregivers with high levels of self-
esteem reported the lowest levels of depression. Caregiver
esteem in one study decreased over time in the caregiving
role, and female caregivers were more likely than were male
caregivers to report decreased esteem over time (Nijboer et
al., 2000).
Uplifts of Caregiving
To uplift is “to improve the spiritual, social, or intellectual
condition of (an individual)” (Merriam Webster, 2001). In an
examination of the uplifts and hassles of caregiving, Kinney
and Stephens (1989) defined uplifts as events that make one
feel good, make one joyful, or make one glad or satisfied or,
“uplifts are daily events that evoke feelings of joy, gladness,
or satisfaction” (Kinney et al., 1995). Researchers interested
in the uplifts of caregiving generally examine caregivers’
appraisals of a list of daily tasks as either “uplifts” or “hassles.”
Uplifts have been hypothesized to buffer the effects of hassles
(Kinney & Stephens, 1989). In an examination of the uplifts
and hassles of caregiving, when uplifts outweighed hassles,
caregivers reported less distress (Kinney et al., 1995).
Caregiver concepts
Caregiver Satisfaction
Satisfaction is one of the most common terms used to address
the positive aspects of caregiving (Kramer, 1997a). An early
definition of caregiver satisfaction was given by Lawton and
colleagues (1989, p. P64) as “The benefits accruing to the
caregiver through his or her own efforts.” This research group
later defined satisfactions as, “Subjectively perceived gains
from desirable aspects of or positive affective returns from
caregiving” (Lawton et al., 1991, p. P182). Caregiving
satisfaction was later defined as, “The result of caregiving
experiences that give life a positive flavor” (Lawton,
Rajagopal, Brody, & Kleban, 1992, p. S157). These authors
and others had difficulty identifying a precise definition of
satisfaction. However, satisfaction has been shown to be
related to positive affect and to burden, and it might have
differential effects in predicting negative and positive affective
sequelae in caregivers (Lawton et al., 1989; Lawton et al.,
1991). This research showed that even burdensome or stressful
activities might be associated with satisfaction for caregivers.
Finding or Making Meaning Through Caregiving
Qualitative researchers identified the construct “finding
meaning” in caregiving. Farran and colleagues (1991) conducted
a study of caregivers of patients with dementia and found six
themes that led to finding meaning as a positive psychological
resource variable in caregiving. These qualitative data were
later used to construct a quantitative scale—the Finding Meaning
Through Caregiving Scale—for use in assessing positive aspects
of and ways of finding meaning through caregiving (Farran et
al., 1999). An earlier study by this group showed that subjects
who were able to find higher levels of meaning had lower
depression scores (Farran et al., 1997).
Ayers (2000) examined the construct of meaning in
caregivers in a qualitative study. This study included thematic
and narrative analyses to describe the processes used by
caregivers in making meaning and how meaning was related
to the caregivers’ more general ideas about themselves.
Caregivers used the process of making meaning to make sense
of caregiving and to interpret both the caregiving experience
and their own affective responses. The process included
expectations (predictions of events), explanations (reasoning
to account for discrepancies among expectations and actual
events), and strategies (actions taken to actualize expectations).
Ayers suggested that studies are needed to determine which
methods of making meaning predict risk for negative outcomes
in caregivers.
Gain in the Caregiving Experience
Caregiver gain is, “The extent to which the caregiving role
is appraised to enhance an individual’s life space and be
enriching” (Kramer, 1997a, p. 219). It may include any
positive return to the caregiver as a result of the caregiving
experience. The concept of caregiver gain was posited by
Kramer after a critical review of literature on the positive
aspects of caregiving. The author proposed a model of
caregiver adaptation in which “appraisal of role gain” is an
intervening process through which background and contextual
Journal of Nursing Scholarship First Quarter 2003 29
Caregiver concepts
variables act to influence well-being. A relationship was also
found between caregiver resources (e.g., coping and social
support) and gain. However, Kramer suggested that the nature
of the relationship has not been clearly explicated in the
literature. In a recent study of caregiver strain and gain, gain
was found to moderate the relationship between stress and
negative affect, and the effects of gain were independent of
negative appraisals of strain (Rapp & Chao, 2000).
One conceptual issue noted by Kramer (1997) in a recent
review of the caregiving experience is that gain in caregiving
is often conceptualized as appraisal. However, in the true
sense of the Transactional Model, appraisal can be positive,
negative, or benign (Lazarus & Folkman, 1984). Also, gain
has been conceptualized as both an event-specific and a role-
related construct. Event-specific gain includes responses to
specific caregiving tasks, and role-specific gain pertains to
more general appraisals of the caregiving role. Researchers
should be careful to delineate which conceptualization of gain
they are attempting to measure. Strain and gain are often
treated as opposites on a continuum when they may actually
be differentially related to outcomes (Kramer, 1997).
Caregiver Appraisal as Neutral
To “appraise” is to “set a value on,” “estimate the amount
of,” or “evaluate the worth, significance, or status of”
something (Merriam-Webster, 2001). Therefore, caregiver
appraisal refers to the process by which a caregiver estimates
the amount or significance of caregiving. Oberst and
colleagues (1989) defined appraisal as the caregiver’s
assessment of both the nature of the stressor and his or her
resources for coping with it. Caregiving appraisal may be
positive, negative, or neutral (Kinsella, Cooper, Picton, &
Murtagh, 1998) and it consists of subjective cognitive and
affective appraisals of the potential stressor and the efficacy
of one’s coping efforts (Lawton et al., 1989).
Caregiver appraisal is a neutral term in that it can indicate
positive, neutral, or negative feelings about the caregiving
situation. However, one attribute of most caregiving situations
is that the caregiver is required to place the needs of the care
receiver above his own needs (Kinsella et al., 1998), with a
resulting imbalanced relationship. The caregiver faces the
expectation to provide care to the person who is sick. Care is
given without compensation or pay. Observable and perceived
costs (or gains) accrue to the caregiver from providing care.
Chronic, repeated stressors lead to increased role expectations
of the caregiver. However, not all imbalanced relationships
are negative, such as parent-child and teacher-student. Thus
caregiver appraisal may be the most useful concept for
exploring the caregiving experience—especially from a
transactional perspective—because appraisal is part of the
transaction between the person and environment (Lazarus &
Folkman, 1984).
Appraisals of the caregiver concerning his or her abilities
and of the caregiving situation in general have been proposed
as mediators of burden and outcomes. For example, a group
of Dutch researchers found that caregiver appraisal was a
30 First Quarter 2003 Journal of Nursing Scholarship
direct indication of psychological distress regardless of such
factors as coping and social support (Pot, Deeg, & van Dyck,
2000). Distress from negative appraisals may result in the
inability of the caregiver to continue with care, with subsequent
change in social functioning of the caregiver (Weitzner et al.,
1999). However, positive appraisals also have been proposed
as mediators of outcomes. For example, how well-prepared the
caregiver feels, the level of caregiver self-esteem, and how well
he or she feels about the situation have been shown to be
positively related to improved psychological outcomes in
caregivers of frail elders (Archbold et al., 1990; Lawton et al.,
1989), and in caregivers of cancer patients (Given et al., 1992;
Kurtz, Given, Kurtz, & Given, 1994; Kurtz, Kurtz, Given, &
Given, 1995; Nijboer et al., 1999a,b). Not all caregivers perceive
the role as stressful or burdensome, and the demand to provide
care is not itself a stressor (Lawton et al., 1989).
Whether caregiving is stressful is determined by the subjective
appraisal of the individual. A recent study of caregivers of
advanced cancer patients in Australia showed that caregivers’
appraisals were a more important determinant of outcomes than
were objective indicators such as patients’ symptoms or
dependence (Aranda & Hayman-White, 2001). Examining
reactions to caregiving as caregiver appraisals indicate whether
burden, stress, gain, or other reactions are present in the
caregiving role.
Few well-designed instruments are available to measure the
concept of caregiver appraisal. One is the Caregiver Reaction
Assessment (CRA) designed by Given and colleagues (1992).
The scale consists of 24 items in five subscales of the caregiving
experience: daily schedule, finances, relationships with others,
physical health, and self-esteem. These subscales indicate several
of the attributes of caregiving appraisal, including needs of care
receiver placed above needs of caregiver, imbalanced
relationship, observable and perceived costs, chronic or repeated
stressors, increased role expectations, and the transactional
process between caregiver and environment. This instrument
has been used in the United States, the Netherlands, and
Australia. Internal consistency and construct validity have been
reported as adequate (Aranda & Hayman-White 2001; Nijboer
et al., 1999b). Further, in use of the CRA with partners of cancer
patients, the instrument had factorial invariance among different
types of caregivers (Nijboer et al., 1999b).
Another instrument for measuring caregiver appraisal is the
Appraisal of Caregiving Scale (ACS; Oberst et al., 1989). This
53-item self-report instrument is used to measure the meaning
of caregiving in four dimensions of appraisal: harm or loss,
threat, challenge, and benign. The instrument can be used to
measure the same attributes as the CRA. For a review of other
available instruments, the reader is referred to Kinsella and
colleagues, 1998.
Discussion
Several aspects of family caregiving have become clear over
the past 2 decades. Early descriptive studies indicated the
negative psychological and physiological health effects

associated with caregiver burden (Barusch, 1988; Oberst et al.,
1989; Robinson, 1989). Caregiver burden has been
conceptualized and measured in many different ways in the
literature (Chwalisz, 1996). Chwalisz concluded from a 1992
review of the literature that caregiver burden was best described
as the negative subjective experience of the caregiver.
More recently researchers have examined both negative
and positive appraisals of caregivers (Farran et al., 1999;
Given et al., 1992; Kinney et al., 1995; Lawton et al., 1991;
Nijboer et al., 2001). As stated by Kinney in her 1997 review,
“[T]here is more to mental health than the absence of
pathology, and people experience both positive and negative
emotions” (p. 218). Thus, if one is to examine caregiving
from a holistic perspective, both positive and negative
appraisals of caregiving should be addressed.
A recent review of caregiver intervention studies included
several recent contributions to knowledge, including the
identification of issues in research design, measurement, and
sampling, and the conduct of descriptive research on cultural
issues and positive aspects of caregiving (Farran, 2001).
Methodologically, much of the information on the positive
aspects of caregiving has resulted from qualitative studies.
The richness of the qualitative data thus far indicates that
quantitative instruments might be limited in assessing positive
aspects of the caregiving experience (Kramer, 1997). Further,
research into the effects of interventions on the positive aspects
of caregiving is needed (Farran, 2001).
Current Research Priorities
Based on the advances in knowledge related to caregiving,
several suggestions can be made for future studies. The
President’s Cancer Panel and the National Institute of Nursing
Research both have indicated the need for research on
supporting family caregivers in an effort to improve quality
of care and quality of life for both patients and family
caregivers. In light of the identified concerns in the 1990s,
added attention to cultural and gender differences in caregiver
research is needed (Farran, 2001). Interventions should be
examined to provide more flexibility for working caregivers
and for caregivers in rural settings. In addition, more
longitudinal studies of caregivers are needed. Another possible
area for study is the use of computers and other technologies
for providing caregiver support (Farran, 2001).
Another need is studies on biophysical sequelae of
caregiving. The central nervous system, the endocrine system,
and the immune system all are part of in the response to
transient, repeated, and chronic psychological stress; therefore,
physical health might be changed as a result of caregiver
appraisal (Hansen-Grant, Pariante, Kalin, & Miller, 1998).
A few studies have been focused on the effects of caregiving
on the caregiver’s physical health (Kiecolt-Glaser & Glaser,
1994). However, these studies should be expanded to include
different caregiving situations, different measures of
physiological effects, and an examination of the effects of
caregiver interventions on caregiver health.
Self-report data are commonly used for measuring mental
and physical health outcomes. These measures may not be
Caregiver concepts
completely accurate concerning psychological distress and
physical health effects of the caregiving role (Dura & Kiecolt-
Glaser, 1990; Robinson & Austin, 1998; Schulz, Visintainer, &
Williamson, 1990). Caregivers tend to underreport problems
both because of denial and because of a lack of awareness of
the effects of caregiving on their mental and physical health
(Robinson & Austin, 1998). Caregivers who are mentally
distressed are likely to seek medical care rather than mental
health services and to have multiple somatic complaints (Schulz
et al., 1990). Also, some measures of mental health may not be
sensitive enough for relatively healthy caregivers. Further, those
with the greatest burden might be less able to obtain health
services for themselves than are those with lesser burden.
Measures thought to be more objective for health status—
such as utilization of mental and physical health services—
might not be valid for this population. By using both self-
report and physiologic indicators of stress and health, a more
accurate picture of the health outcomes of caregivers can be
obtained. Examining interactions among objective stressors,
caregiver appraisals, and outcomes in multivariate analyses
might provide insight about why caregiver research has
produced varying results in different contexts (Braithwaite,
1996). Examining the stress from a biobehavioral perspective
should lead to better identification of interventions.
Conclusions
Many people with chronic illnesses are cared for at home.
Although home-based care is financially cost effective for the
health care system, the increased reliance on family members
exposes them to high levels of chronic stress—contributing to
physical and psychological morbidity of caregivers. These costs
have rarely been examined. Better understanding is needed of
biopsychosocial factors contributing to poor health outcomes
and the needs of caregivers for information, support, and
assistance with coping. Understanding the multiple concepts
related to caregiving experiences and the relationships among
them will enable nurses to address these needs of caregivers. In
particular, examining both positive and negative aspects of
caregiving and using both physiologic and self-report measures
will better enable nurses to meet these goals.
References
Aranda, S., & Hayman-White, K. (2001). Home caregivers of the person
with advanced cancer: An Australian perspective. Cancer Nursing, 24,
300-307.
Archbold, P., Stewart, B., Greenlick, M., & Harvath, T. (1990). Mutuality
and preparedness as predictors of caregiver role strain. Research in
Nursing and Health, 13, 375-384.
Ayres, L. (2000). Narratives of family caregiving: The process of making
meaning. Research in Nursing and Health, 23, 424-434.
Barusch, A. (1988). Problems in coping strategies of elderly spouse
caregivers. The Gerontologist, 28, 677-685.
Braithwaite, V. (1996). Between stressors and outcomes: Can we simplify
caregiving process variables? The Gerontologist, 36, 42-53.
Chwalisz, K. (1996). The perceived stress model of caregiver burden:
Evidence from spouses of persons with brain injuries. Rehabilitation
Psychology, 41(2), 91-113.
Journal of Nursing Scholarship First Quarter 2003 31
Caregiver concepts
Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A global measure of
perceived stress. Journal of Health and Social Behavior, 24, 385-396.
Dura, J., & Kiecolt-Glaser, J. (1990). Sample bias in caregiving research.
Journal of Gerontology: Psychological Sciences, 45(5), 200-204.
Farran, C. (1997). Theoretical perspectives concerning positive aspects
of caring for elderly persons with dementia: Stress/Adaptation and
existentialism. The Gerontologist, 37, 250-251.
Farran, C. (2001). Family caregiver intervention research: Where have
we been? Where are we going? Journal of Gerontological Nursing, 27,
38-45.
Farran, C., Keane-Hagerty, E., Salloway, S., Kupferer, S., & Wilkin, C.
(1991). Finding meaning: An alternative paradigm for Alzheimer’s
disease family caregivers. The Gerontologist, 31, 483-89.
Farran, C., Miller, B., Kaufman, J., & Davis, L. (1997). Race, finding
meaning, and caregiver distress. Journal of Aging and Health, 9, 316-
333.
Farran, C., Miller, B., Kaufman, J., Donner, E., & Fogg, L. (1999). Finding
meaning through caregiving: Development of an instrument for family
caregivers of persons with Alzheimer’s disease. Journal of Clinical
Psychology, 55, 1107-1125.
Folkman, S. (1997). Positive psychological states and coping with severe
stress. Social Science & Medicine, 45, 1207-1221.
Given, C., Given, B., Stommel, M., Collins, C., King, S., & Franklin, S.
(1992). The caregiver reaction assessment (CRA) for caregivers to
persons with chronic physical and mental impairments. Research in
Nursing and Health, 15, 271-83.
Hansen-Grant, S., Pariante, C., Kalin, N., & Miller, A. (1998).
Neuroendocrine and immune system pathology in psychiatric disease.
In A. Schatzberg & C. Nemeroff (Eds.), Textbook of
Psychopharmacology (2nd ed.). Washington, DC: American Psychiatric
Press.
Hileman, J., Lackey, N., & Hassanein, R. (1992). Identifying the needs of
home caregivers of patients with cancer. Oncology Nursing Forum,
19(5), 771-777.
Jones, S. (1996). The association between objective and subjective caregiver
burden. Archives of Psychiatric Nursing, 10(2), 77-84.
Kiecolt-Glaser, J., & Glaser, R. (1994). Caregivers, mental health, and
immune function. In E. Light, G. Niederehe, & B. Lebowitz (Eds.),
Stress effects of family caregivers of Alzheimer’s patients: Research
and interventions (pp. 64-75). New York: Springer.
Kinney, J., & Stephens, M. (1989). Hassles and uplifts of giving care to a
family member with dementia. Psychology and Aging, 4, 402-408.
Kinney, J., Stephens, M., Franks, M., & Norris, V. (1995). Stresses and
satisfactions of family caregivers to older stroke patients. Journal of
Applied Gerontology, 14(1), 3-21.
Kinsella, G., Cooper, B., Picton, C., & Murtagh, D. (1998). A review of
the measurement of caregiver and family burden in palliative care.
Journal of Palliative Care, 14(2), 37-45.
Kramer, B. (1997a). Gain in the caregiving experience: Where are we?
What next? The Gerontologist, 37, 218-232.
Kramer, B. (1997b). Differential predictors of strain and gain among
husbands caring for wives with dementia. The Gerontologist, 37, 239-
249.
Kurtz, M., Kurtz, J., Given, C., & Given, B. (1995). Relationship of
caregiver reactions and depression to cancer patients’ symptoms,
functional states, and depression—A longitudinal view. Social Science
and Medicine, 40(6), 837-846.
Kurtz, M., Given, B., Kurtz, J., & Given, C. (1994). The interaction of
age, symptoms, and survival status on physical and mental health of
patients with cancer and their families. Cancer, 74, 2071-2078.
Lawton, M.P., Kleban, M., Moss, M., Rovine, M., & Glicksman, A.
(1989). Measuring caregiving appraisal. Journal of Gerontology:
Psychological Sciences, 44(3), 61-71.
Lawton, M., Moss, M., Kleban, M., Glicksman, A., & Rovine, M. (1991).
A two-factor model of caregiving appraisal and psychological well-
being. Journal of Gerontology; Psychological Sciences, 46, P181-P189.
Lawton, M., Rajagopal, D., Brody, E., & Kleban, M. (1992). The dynamics
of caregiving for a demented elder among Black and White families.
Journals of Gerontology, 47, S156-S164.
Lazarus, R., & Folkman, S. (1984). Stress, appraisal, and coping. New
York: Springer.
32 First Quarter 2003 Journal of Nursing Scholarship
Maurin, J., & Boyd, C. (1990). Burden of mental illness on the family: A
critical review. Archives of Psychiatric Nursing, 4(2), 99-107.
Merriam-Webster. (2001). WWWebster Dictionary [Online]. Retrieved
February 22, 2001, from http://www.m-w.com/dictionary.htm
Morano, C. (2001). Appraisal and coping: Moderators or mediators of
stress in Alzheimer’s disease caregivers? Manuscript submitted for
publication.
Nijboer, C., Tempelaar, R., Triemstra, M., Van den Bos, G., & Sanderman,
R. (2001). The role of social and psychologic resources in caregiving of
cancer patients. Cancer, 91, 1029-1039.
Nijboer, C., Triemstra, M., Tempelaar, R., Mulder, M., Sanderman, R., &
Van den Bos, G. (2000). Patterns of caregiver experiences among
partners of cancer patients. The Gerontologist, 40, 738-746.
Nijober, C., Triemstra, M., Tempelaar, R., Sanderman, R., & Van den
Bos, G. (1999a). Measuring both negative and positive reactions to
giving care to cancer patients: Psychometric qualities of the caregiver
reaction assessment (CRA). Social Science and Medicine, 48, 1259-
1269.
Nijboer, C., Triemstra, M., Tempelaar, R., Sanderman, R., & Van den
Bos, G. (1999b). Determinants of caregiving experiences and mental
health of partners of cancer patients. Cancer, 86, 577-88.
Nolan, M., Grant, G., & Ellis, N. (1990). Stress is in the eye of the
beholder: Reconceptualizing the measurement of carer burden. Journal
of Advanced Nursing, 15, 544-555.
Oberst, M., Gass, K., & Ward, S. (1989). Caregiving demands and
appraisal of stress among family caregivers. Cancer Nursing, 12(4),
209-215.
Ory, M., Hoffman, P., Yee, J., Tennstedt, S., & Schulz, R. (1999). Prevalence
and impact of caregiving: A detailed comparison between dementia
and nondementia caregivers. The Gerontologist, 39, 177-185.
Pearlin, L. (1994). Conceptual strategies for the study of caregiver stress.
In E. Light & G. Niederehe (Eds.), Stress effects on family caregivers
of Alzheimer’s patients: Research and interventions (pp. 3-21). New
York: Springer.
Pearlin, L., Mullan, J., Semple, S., & Skaff, M. (1990). Caregiving and
the stress process: An overview of concepts and their measures. The
Gerontologist, 30(5), 583-594.
Pot, A., Deeg, D., & van Dyck, R. (2000). Psychological distress of
caregivers: moderator effects of caregiver resources. Patient Education
and Counseling, 41, 235-240.
Rapp, S., & Chao, D. (2000). Appraisals of strain and of gain: Effects on
psychological wellbeing of caregivers of dementia patients. Aging and
Mental Health, 4, 142-147.
Robinson, K.M. (1989). Predictors of depression among wife caregivers.
Nursing Research, 38, 359-363.
Robinson, K., & Austin, J. (1998). Wife caregivers’ and supportive others’
perceptions of the caregivers’ health and social support. Research in
Nursing and Health, 21, 51-57.
Schulz, R., Visintainer, P., & Williamson, G. (1990). Psychiatric and
physical morbidity effects of caregiving. Journal of Gerontology,
Psychologic Sciences, 45(5), P181-P191.
Wallsten, S., & Snyder, S. (1990). A comparison of elderly family
caregivers’ and noncaregivers’ perceptions of stress in daily experiences.
Journal of Community Psychology, 18, 228-238.
Weitzner, M., Jacobsen, P., Wagner, H., Friedland, J., & Cox, C. (1999).
The caregiver quality of life index-Cancer (CQOLC) scale:
Development and validation of an instrument to measure quality of
life of the family caregiver of patients with cancer. Quality of Life
Research, 8, 55-63.
Zarit, S., Reever, K., & Bach-Peterson, J. (1980). Relatives of the impaired
elderly: Correlates of feelings of burden. The Gerontologist, 20, 650-
655.