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INTERNATIONAL PEDIATRIC NURSING

Column Editor: Bonnie Holaday, DNS, RN, FAAN

Caregiver Burden: A Concept Analysis

Kuei-Ru Chou, PhD, RN

The development of the concept of burden for use in research lacks consistent conceptualization and operational definitions.
The purpose of this article is to analyze the concept of burden in an effort to promote conceptual clarity. The technique
advocated by Walker and Avant is used to analyze this concept. Critical attributes of burden include subjective perception,
multidimensional phenomena, dynamic change, and overload. Predisposing factors are caregiver’s characteristics, the demands
of caregivers, and the involvement in caregiving. The consequences of burden generate problems in care-receiver, caregiver,
family, and health care system. Overall, this article enables us to advance this concept, identify the different sources of burden,
and provide directions for nursing intervention.
Copyright r 2000 by W.B. Saunders Company

B URDEN is one of the most commonly used


variables in caregiving research, both as a
predictor and as an outcome. However, the develop-
ing the occurrence of burden, (4) identify the
consequences of this concept, and (5) explore the
empirical referents of burden.
ment of the concept of burden for use in a research
lacks consistent conceptualization and operational CONCEPT OF BURDEN IN THE HEALTH
definitions. The lack of consistency in the results PROFESSIONS
across studies and the inadequate psychometric The concept of family burden was first intro-
properties of burden measures limit burden’s scien- duced into the literature by Grad and Sainsbury
tific rigor for generating additional research. The (1966) in an examination of community care for the
meaning of burden is further obscured by the mentally ill. They defined burden as any cost
tendency for some researchers to use the term (negative consequences) to the family of which the
interchangeably with ‘‘well-being, stress, prob- patient is a member. In this context, burden is
lems, adverse effects’’ (Montgomery, Stull, & Bor- broadly viewed as a mediating force between the
gatta, 1985). The need to clarify the concept and to patient’s impairment and the impact that caregiving
understand the relevant attributes of burden would has on the lives of the caregivers and their families.
help explicate it’s usefulness in practice and re- Since that time, burden has become a commonly
search. The purpose of this article is to analyze the recognized phenomenon in the health care litera-
concept of burden in an effort to promote concep- ture.
tual clarity. The technique advocated by Walker Burden as a concept was first explicated by
and Avant (1988) will be used to analyze the Hoenig and Hamilton in 1966. They suggested that
concept of burden. This report seeks to (1) provide events, activities, and specific events need to be
a review of the conceptual definitions of burden, (2) separated from emotions, feelings, and attitudes
delineate the critical attributes of burden, (3) ex- associated with caregiving. Thus, these investiga-
plore the predisposing factors that may be influenc- tors were the first to dichotomize burden into
subjective and objective dimensions. Objective
burden referred to the events and activities associ-
From the School of Nursing, National Defense Medical ated with negative caregiving experiences. Subjec-
Center, Taipei, Taiwan. tive burden referred to feelings aroused in caregiv-
Address reprint requests to Kuei-Ru Chou, PhD, RN, Associ- ers as they fulfilled their caregiving functions
ate Professor, School of Nursing, National Defense Medical (Hoenig & Hamilton, 1966).
Center, Taipei, Taiwan ROC.
Copyright r 2000 by W.B. Saunders Company
To further clarify this concept, Zarit, Reever, &
0882-5963/00/1506-0002$10.00/0 Bach-Peterson (1980) defined burden as ‘‘the ex-
doi:10.1053/jpdn.2000.16709 tent to which caregivers perceived their emotional,

398 Journal of Pediatric Nursing, Vol 15, No 6 (December), 2000


CAREGIVER BURDEN: A CONCEPT ANALYSIS 399

physical health, social life, and financial status as a Romeis (1989), the evaluation process of burden is
result of caring for their relative’’ (p. 261). Zarit et based on how the caregiver interprets the demands
al. (1980) viewed burden as the product of a of the ill person and how the caregiver organizes
specific, subjective, interpretive process. This view and uses available resources (p. 193). The concept
depicts caregiver burden in a way that is not of burden should be used to refer to the subjective
perceived as an unavoidable, negative consequence perceptions of caregivers related to the degree of
of providing care, but as the subjective perception problems experienced in relation to the patient’s
of the caregiver of tasks performed by him or her specific impairments. These approaches suggest
for the impaired person, or to personal and individu- that burden is processed through caregivers’ subjec-
alized reactions to the care-receiver’s behavior. tive perception (Schene, 1990).
Platt (1985) pointed out that objective burden
involves ‘‘disruption to family/household life that Multidimensional Phenomena:
is potentially verifiable and observable’’ (p. 386). Bio-eco-psycho-social
‘‘Objective burden differs from subjective burden,
Most recently, researchers have found caregiver
which depends entirely on caregivers sharing their
burden to show multidimensional characteristics.
personal feelings’’ (p. 386). Similarly, Montgom-
When using selected statistical (factor analyses)
ery, Gonyea, & Hooyman (1985) defined subjec-
and measurement (multiple measures) strategies to
tive burden as ‘‘the caregivers’ attitude toward or
study the multidimensional phenomenon (bio-eco-
emotional reactions to the caregiving experience,
psycho-social), the concept of burden usually cov-
while objective burden is the extent of disruptions
ers four aspects: physical, financial, psychological,
or changes in various aspects of the caregiver’s life
and social. Burden resulting from caregiving can
and household’’ (p. 21). However, the conceptual
generate burden in several life domains of the
distinction between the experience and the distress
caregiver: physical, psychological, social, spiritual,
is not clear (Braithwaite, 1992).
and financial (Woods, Haberman & Packard, 1993).
Later studies have tried to clarify the differences
However, the caregiver may not perceive all of the
between objective and subjective burden. The most
dimensions at one time.
recent trend in the literature has taken an even
broader approach to understanding caregiver bur-
den. Instead of conceptualizing burden as a subjec- Dynamic Change
tive/objective dichotomy, caregiver burden is not Burden is believed to change as demands and the
viewed as a multidimensional construct, and re- extent of caregiving involvement change. Care-
searchers are trying to understand the variables giver burden changes over time because of increas-
involved (Kosberg, Cairl, & Keller, 1990), thus ing disability of the impaired care-receiver and
moving the conceptualization of burden towards changes in the family’s expectations of the patient.
more specificity. The term caregiver burden is now Thus, what might be considered burdensome at one
more widely used to refer to the physical, psycho- time may change as the caregiver adapts and finds
logical or emotional, social, and financial problems new ways to cope with the patient’s impairment, or
that can be experienced by family members caring are replaced with new problems or crisis situations
for a chronically ill or impaired family member. (Perlick, Clarkin, & Sirey, 1995).
The concept of caregiver burden applies to parents
caring for a child with a chronic illness as well as a Overload
spouse or adult caring for an ill or aging parent. Burden results from an imbalance of perceived
demands and resources. These primary and associ-
CRITICAL ATTRIBUTES
ated demands may come from the care-receiver,
Walker and Avant (1988) suggest that the critical other family members, work, or society. The re-
attributes of the concept being analyzed are the sources may come from an individual himself or
characteristics of the concept that emerge repeat- herself or other informal or formal supports. Once
edly throughout the literature. Critical attributes of the individual’s resources are not adequate to meet
burden include subjective perception, multidimen- the demands, the individual may experience over-
sional phenomena, dynamic change, and overload. load in dealing with the specific demands. The
caregiver will feel burdened to the extent that he or
Subjective Perception she perceives the care-receiver’s demands or other
How can burden seriously affect some caregivers associated demands as outstripping the available
but not others in similar situations? According to resources. The most frequent emotional reactions
400 KUEI-RU CHOU

reported by the caregivers were feelings of being tancy, women are much more likely than men to
overloaded (Corbin & Strauss, 1988). assume responsibility for providing direct care.
This relationship between gender and burden has
PREDISPOSING FACTORS persisted across a number of studies. The greater
Predisposing factors are those factors that occur burden on female caregivers has been explained as
before a care-receiver’s perception of feeling bur- ‘‘women in the middle’’ and ‘‘the sandwich genera-
den (Walker & Avant, 1988). These factors increase tion’’ (Glazer, 1990; Loomis & Booth, 1995; Corbin
the risk or vulnerability for perceiving burden. & Strauss, 1988) which refers to the multiple roles
Several predisposing factors have been identified such as mother, wage earner, household manager,
with caregiver burden. These are caregiver’s char- and primary emotional supporter. Gender differ-
acteristics, the demands of caregivers, and the ences in approach to caregiver burden can be traced
involvement in caregiving (Table 1). to the result of role socialization (Montgomery &
Datwyler, 1990). Men may focus more on task
Caregiver’s Characteristics accomplishments and experience less stress (Robin-
Social Locations son, 1990a). Several studies also contained usable
Pearlin (1989) points out that many stressful data about gender differences in caregiver burden
experiences can be traced back to surrounding (Dowler, Jordan-Simpson, & Adams, 1992; Parks
social structures and peoples’ locations within the & Pilisuk, 1991). Consistent findings are that the
structure. Hence, the origin and analysis of the majority of family caregivers are women (range,
burden concept should begin with examining ‘‘the 47% to 80%) and female caregivers perceived their
social arrangements of society and the structuring burden to be greater than men. However, the
of experience within these arrangements’’ (p. 242). sample bias from overreliance on small and clini-
The most encompassing of these social structures cally drawn samples and lack of consistent mea-
are the various systems of stratification that cut sures of key concepts might limit this interpreta-
across societies, such as those based on social and tion.
economic class, race and ethnicity, and gender. The Socioeconomic status. Economic resources play
social positions viewed as lower locations include an important role in a family’s perception of
being female, older, unemployed, and having lower well-being. Income also has been found to be the
socioeconomic status. primary determinant of whether and how many
Gender. The gender of the caregiver is an services to alleviate the burden of caregiving can be
important consideration because it appears that purchased (Loomis & Booth, 1995). It has been
burden is differentially experienced by men and shown that insufficient income reduces the access
women in the caregiving role. Because of persistent to resources that might make caregiving more
sex role differences and greater female life expec- bearable. Financial expense of caregiving is one of
Table 1. List of Elements in the Concept of Burden
Mediating and/or Consequences/
Critical Attributes Predisposing Factors Moderating Factors Outcomes

Subjective perception Caregiver’s characteristics Coping strategies Caregiver


Multidimensional phenomena Social locations Social support Deterioration in health status
Dynamic change Gender Occurrence of psychological problems
Age
Socioeconomic status
Race/culture
Overload Health Restrictions in social activities
Psychological factors Care-receiver
The sense of obligation and responsibility Poor health outcomes
Affection, reciprocity, and familism
Ego development Family
Personality factors Conflict
The demands of caregivers
Primary demands Financial costs
Secondary demands Health care system
Involvement in caregiving
Time involvement Increasing care expenditures
Number of tasks involved
Types of caregiving
CAREGIVER BURDEN: A CONCEPT ANALYSIS 401

the best predictors of caregiver burden (Fink, from taking vacations and may curtail social activi-
1995). However, there are some burden studies that ties, and worrying about the child’s welfare may
have failed to find the relationship between family restrict their enjoyment of activities they choose to
income and burden (Cuijpers, 1999; Noh & Avison, pursue (Biegel, Song, & Chakravarthy, 1994). An
1996). attribution of responsibility is the result of a
Race and Culture. Race can affect the intensity process involving the evaluation of five dimen-
of the experience of caregiver burden (Picot, 1995; sions; causal dimension, knowledge of the conse-
Starn, 1996). Normal levels of intergenerational quences, intentionality, coercion, and appreciation
contact and filial responsibility affect the meaning a of the moral wrongfulness of the event. Helene
culture attaches to family care. Varying cultural (1993) reported that there was a significant correla-
values also affect caregiving decisions about the tion between responsibility attribution for relative’s
care of children with special health care needs impairment and burden (r ⫽ .37, p ⬍ .01).
(McCubbin, 1993). Who cares for the child in the Affection, reciprocity, and familism. Knafl
home and who makes decisions about care varies (1993) identified some variables that are believed
by culture. to be related to the caregiver–care-receiver (parent–
The relationship between race/culture and bur- ill child) relationship as affection, reciprocity, and
den may be affected by other intervening factors normalization. Family caregiving takes on an his-
such as socioeconomic status or the sense of toric context because bonds of affection, reciproc-
obligation and responsibility. However, the com- ity, and familism that sustain caregiving took root
plex interaction of these factors is still not fully in past relationships. Both child and caregiver
understood in the literature and little research has (parent) bring a history of interaction that may
been conducted in this area. enhance the complicated caregiving process. These
factors may positively affect the quality of the
Health caregiver (parent)–care-receiver (child) relation-
Caregivers in poor health were consistently ship. They also will affect the motivation and level
found to have significantly higher burden levels of burden experienced by the parent. Several
than those in good health (Bull, 1990; Corbin & studies have found that parents who reported
Strauss, 1988; Monahan, Greene, & Coleman, positive relationships with the child who was ill
1992; Sisk, 2000). According to Bull (1990), were less likely to perceive a high degree of burden
relationships between burden and health can change (Deatrick, Knafl, & Walsh, 1988; Kazak, 1989).
over time as the situation becomes more burden- Therefore, caregiving may be perceived as less
some. burdensome when the caregiver and care-receiver
relationship is characterized by strong bonds of
Psychologic Factors affection.
Some studies suggest that a few people may Ego development. The caregiver’s level of ego
actually benefit from the caregiver experience development may mediate the stress-inducing re-
(Chen, 1999). This indicates the importance of the sponsibilities of the caregiving role and directly
interindividual discrepancy in the subjective percep- influence the perception of burden level of the
tion of burden. Caregiver burden may be better caregiver. Horowitz and Dobroff (1982) proposed
known by psychological variables and characteris- that an individual’s level of ego development
tics of the caregiving context than by factors such directly influenced his or her own subjective expe-
as the illness characteristics (Turner-Henson, Hola- rience of caregiver burden. However, Bililies (1989)
day, Corser, Ogletree, & Swan, 1994). These fac- found ego development did not account for a
tors might influence a parent to perceive a situation significant portion of the variance in the regression
as burdensome and unpleasant while another parent equation (r ⫽ .08). Research in the area of ego
values the responsibilities of caregiving as an development and burden towards a family mem-
opportunity for growth. Findings such as these may ber’s impairment has been limited.
imply the presence of certain factors in the psycho- Personality factors. Few studies have recog-
logical makeup of the caregiver which have gone nized personality factors, such as locus of control,
undetected. self-efficacy, and hardiness, as an influence in how
Sense of obligation and responsibility. Obliga- the caregiver perceives the caregiving situation.
tion may be one of the potential motivating factors Most of the research has been focused on the
in the caregiving relationship. Caregivers’ sense of buffering effect of hardiness on stressful life events
responsibility for an ill child may discourage them and illness (Tartasky, 1993). According to an
402 KUEI-RU CHOU

exploratory study by Carey, Oberst, McCubbin, Doering, 1999; Williams, Press, & Williams, 1999).
and Hughes (1991), family hardiness is an impor- Disturbance behavior can be related to four aspects
tant resource that diminishes caregiver burden and of caregiver burden; negative family relationships,
increases the use of social support. These results restrictions in caregiver activity, decrease in care-
suggest that hardy people may become more in- giver health, and caregiver depression (Kurnat &
volved in caregiving and treat it as an effective way Moore, 1999; Mastrain, Ritter, & Deimling, 1996).
for dealing with burden events. Reinhard (1994) also found that behavioral distur-
In summary, the relationship between psychologi- bance was a predictor of burden accounting for
cal factors and caregiver burden has not been 23% of the variance ( p ⬍ .001). However, some
explored extensively in the literature. Only a few researchers found that caregiver burden is not
studies (Helene, 1993; Robinson, 1990b; Sisk, directly influenced by the behavior problems in the
2000) have investigated the relationship of psycho- care-receiver (Baronet, 1999). These latter findings
logic factors and burden. The sense of obligation contradict the results cited above and may be
and responsibility has been found to be moderately caused by (1) the variability in assessment of the
correlated (r ⫽ .37) with burden (Helene, 1993). person’s physical and behavioral problems, (2) the
Affection has been found to be moderately associ- relationship of particular types of problems with
ated with caregiver burden (r ⫽ .30; r ⫽ .15) (Rob- specific types of burden, (3) the inconsistent opera-
inson, 1990b). The study of the relationship of ego tional definitions of burden, and (4) the differentia-
development, reciprocity, familism, and personal- tion in the conceptualization of burden. These
ity factors to burden has been widely neglected. reasons probably contributed to the discrepancies
in the empirical findings and also made compari-
The Demands of Caregivers sons difficult across studies.
Primary Demands
Secondary Demands
Primary demands are determined by the func-
tional limitation and degree of disturbance behav- Secondary demands on the caregiver may come
ior of the impaired family member. Functional from family, work, or society (Davidhizar, 1994).
limitations are related to the care-receiver’s func- The burden on the caregiver appears to be specifi-
tional capabilities which are measured by the cally related to the presence of young children in
activities of daily living and instrumental activities the household and to single-parent families headed
of daily living. by a woman. Noh and Avison (1996) reported that
Degree of functional limitation. The degree of being in households with young children was a
functional limitation in the care-receiver (child) has significant predictor of burden among female care-
been shown in some studies to be a significant givers (B ⫽ .35, p ⬍ .05).
variable with respect to the degree of burden
experience by the caregiver (Chou, LaMontagne, & Involvement in Caregiving
Hepworth, 1999; Noyes, Hartman, & Samuels, Involvement in caregiving is defined as the
1999). Functional limitation may prevent the child number of caregiving tasks performed and the
from independently conducting activities of daily amount of time the caregiver spends performing
living (e.g., bathing, eating, dressing, walking, them (Schott-Baer, 1993). Focusing on the number
going to school, preparing snacks, taking medicine, of tasks of caregiving will divert attention from the
and using the telephone). Chakraberti, Kulhara, and work these caregivers are engaged in. It may be
Verma (1992) assessed the strength and direction of more important to distinguish the caregiving in-
assorted variables taken together in determining volvement by purpose (quality) as well as by time
burden. Functional limitation of the impaired care- or tasks (quantity).
receiver was a meaningful variable and explained
38% of the variance ( p ⬍ .01). Similarly, a number Time Involvement
of studies also have shown that the dysfunctions of A study by Breslau (1983) showed the parent
children were significantly correlated with care- spent an average of 6 hours 28 minutes per day
giver burden (Monsen, 1999; Ostwold, 1997). assisting with medication, personal hygiene, house-
Presence of disturbance behavior. The relation- hold chores, transportation, and general physical
ship between the child’s disturbance or disruptive care. It also showed that the majority of parents had
behavior and caregiver burden is noteworthy. The provided care 7 days a week for an average of 4
child’s constant need for care or attention can lead hours a day in assisting the ill child (Holaday &
to parental fatigue and anxiety (Moser, Dracup, & Turner-Henson, 1991). Some studies showed that
CAREGIVER BURDEN: A CONCEPT ANALYSIS 403

time involvement was positively correlated with ated with an impaired family member. Burden
caregiver burden (range, r ⫽ .17 to .37) (Chou et associated with caregiving tasks may be avoided or
al., 1999; Whitley, Kristjanson, & Denger, 1999). reduced by sharing or delegating specific tasks to
others (Chen, 1999). For example, the perspectives
Number of Tasks Involved of hierarchical substitution, functional, and social
Holaday and Turner-Henson (1991) found that convoys suggest that larger networks with greater
the tasks most frequently performed by caregivers diversity in composition will emerge over time in
included household and financial management, response to this type of burden. Research about the
mobility, and personal care. Research conducted by social costs of providing care suggests that interper-
Schott-Baer (1993) found that the number of tasks sonal sources of burden may be less affected by
performed by caregivers were positively correlated specific types of help (Fink, 1995).
with burden (range, r ⫽ .19 to .37). Holaday and Turner-Henson (1991) found that
parents tended to provide care alone or with
Types of Caregiving assistance from family members because formal
Considering the involvement in caregiving, the care from community and social service seems to
focus on time and number of tasks involved may be viewed as a last resort by the parents. Most of
limit our understanding of the endeavors of caregiv- the literature on caregiver burden emphasized the
ers. Most researchers do not address the type of importance of informal support to caregivers. Feel-
caregiving. Time involvement and number of tasks ings of burden may be lessened when informal
involved only explain the quantity of caregiving helpers share in the caregiving responsibilities
(Turner-Henson et al., 1994). Despite the impor- (Cuijpers, 1999). Several researchers found that the
tance of this caregiving experience, little is known availability of formal or informal supports received
about the relationship between the types of caregiv- by the caregivers were negatively correlated with
ing and caregiver burden (Corbin & Strauss, 1988). caregiver burden (range, r ⫽ ⫺.26 to ⫺.48) (Bull,
1990; Robinson, 1990a). This finding suggests that
MEDIATING AND/OR MODERATING FACTORS the more supports received, the less the burden
Coping and Burden perceived by the caregiver. Also, the degree of
The burden experienced by a caregiver is in part available formal and informal support has been
determined by the caregiver’s choice of coping shown to significantly moderate caregiver burden
strategies (Singer & Irvin, 1989). Some researchers and to have a positive impact on lessening the
pointed out that a chosen coping strategy may be burdensome aspects of the caregiving role (Biegel
affected by both personality variables and the et al., 1994). It is important to distinguish between
situation itself (Lazarus & Folkman, 1984). Studies the availability of a social resource and the actual
have addressed the specific coping strategies used use of that resource. This distinction was not made
by caregivers to mediate burden. The empirical in these studies (Bull, 1990).
findings show that higher levels of interaction with However, Tilden and Galyen (1987) provide
family members, social and spiritual support- some opposite views that did not support the idea
seeking behaviors, and receiving help from family that social support moderates stress. Social support
members decrease caregiver burden (Brickman, may not always be benevolent and sometimes it
Rabinowitz & Karuza, 1982). Singer & Irvin may be a source of stress. Cuijpers (1999) found
(1989) found that three internal coping strategies that caregivers occasionally viewed visits by other
(confidence in problem-solving, reframing the prob- relatives as intrusive rather than helpful. Thus, we
lem, and passivity) and two external coping strate- may need to carefully explore to what extent the
gies (use of spiritual support and extended family) moderated or mediated effect of social support
were significantly related to less caregiver burden. influence caregiver burden in the future.
Information seeking and affective regulation also
have been found to be correlated with decreased CONSEQUENCES/OUTCOMES
burden. However, some coping strategies may The literature on burden limits the conclusions
increase caregiver burden (Tilden & Galyen, 1987). that can be made about the consequences/outcomes
of burden because the majority of burden studies
Social Support and Burden are correlational. Therefore, no predictions can be
The potential of social support as a mediator made about burden’s impact on various outcomes.
and/or moderator to burden might appear to be of Overall, the burden resulting from caregiving can
value in families who experience the burden associ- generate problems in several life domains of the
404 KUEI-RU CHOU

care-receiver, caregiver, family, and health care Negative feelings held by the parent may correlate
system. with the degree of mood disturbance or depression
by the child (Bennett, 1994). Heightened feelings
Caregiver of sadness, helplessness, and worthlessness in the
The deterioration in health status. Generalized child may contribute to the burden of the parent.
somatic complaints are well-known within the
burden literature such as chronic fatigue, sleepless- Family
ness, stomach problems, and weight change (Corbin Conflict. Conflicts can occur in fulfilling differ-
& Strauss, 1988). One of the potentially negative ent roles because of the number of roles and role
consequences of caregiving found by Mastrian et obligations. The negative consequences of caregiv-
al., (1996) was an overwhelming significant in- ing stem not simply from feeling compelled to
crease in the illness rate among caregivers as a provide care, but from the conflict between feeling
result of their new responsibilities. Similarly, obligated to provide care versus feeling anger at
Kiecolt-Glaser et al. (1991) found that spouse having to provide care. Family/marital conflict is
caregivers had reductions on three measures of common when examining caregiver burden. It has
cellular immunity when compared with socioeco- been reported that 30% to 56% of caregivers
nomic status matched controls. experience family or marital conflict as a result of
The occurrence of psychologic problems. Ac- burden created by providing care to a chronically ill
cording to Coppel, Burton, Becker, and Fiore child (Knafl, 1993; Sabbeth & Leventhal, 1984).
(1985), the top six psychologic problems of caregiv- Financial costs. People with a special-needs
ers were depression, anger, worry, discouragement, child face unique financial problems (Rowland,
guilt, and anxiety. A number of studies (Perlick et 1989). Because of the demanding nature of the
al., 1995) showed highly significant discrepancies caregiving experience, caregivers may have to stop
between caregivers and non-caregivers in their working or work part-time to provide care. Other
mental health indicators. Caregivers reported al- researchers also report that financial problems
most three times as many depressive symptoms as occur within the family in the care of the chroni-
their age-matched non-caregivers (Monsen, 1991; cally ill family member (range, 11% to 42%)
Ostwold, 1997). (Kurnat & Moore, 1999).
Skaff and Pearlin (1992) noted that caregivers
were at risk for loss of self. This resulted from an Health Care System
engulfment in the caring role. The limited time for Family caregiving can save billions of dollars
socialization and the reduction of the caregiver’s that would otherwise be required for long-term
social roles may have contributed to the loss. Skaff hospitalization and care. Without the involvement
and Pearlin (1992) stated that the notion of ‘‘loss of of family caregivers, current public long-term care
self’’ helps to understand the very personal cost of expenditures would at least double (Rowland,
the caregiving experience. 1989).
Restrictions in social activities. Caregivers have In summary, the evaluation of multiple conse-
been portrayed as facing social isolation and inter- quences is highly desirable because individuals
ruptions of careers (Maurin & Boyd, 1990). This have different social locations, psychologic charac-
reduction is usually caused by an inability to leave teristics, caregiving situations, and mediating pro-
the child with a babysitter. Within the caregiving cesses resulting in the manifestations of burden.
role, things like social pastimes and recreation that Overall, the process of burden is a continuing
tend to be more flexible in nature are usually given process that typically starts with a specific trigger
up first in an effort to cope with the demands of event. The event may or may not cause burden.
providing care (Corbin & Strauss, 1988). This depends on the individual’s subjective percep-
tion. This perception may be affected by the
Care-receiver (Child) individual’s characteristics, psychological factors,
The physical or psychologic state of the care- other mediators, and the interaction between the
giver (parent) as well as the caregiver’s perception individual and the event. The consequences result-
about the child’s problems can also affect the ing from caregiver burden are multifaceted and
physical or psychologic state of the child. Corbin these consequences may also cause burden indi-
and Strauss (1988) show that personal distress in rectly by altering adversely or positively our life
the caregiver correlates with an increase in with- situations. If the situation is viewed adversely,
drawn and apathetic behavior in the care-receiver. more complicated antecedents will negatively af-
CAREGIVER BURDEN: A CONCEPT ANALYSIS 405

fect the entire process. On the contrary, when the specific, interpretative process. Poulshock and
situation becomes tolerable, it helps to positively Deimling (1984) proposed that the caregiver’s
restructure the entire situation. Thus, the perceived degree of impairment be segregated from burden
burden by the individual is not caused by any one and placed into a domain of impairment. However,
of the domains but by the interaction among them. it should be noted that this model does not take into
Figure 1 represents the conceptual model of burden account the caregiver’s feelings about the chronic
and depicts the relationship among predisposing illness. Thus, as a concept in research, burden is a
factors, mediators or moderators, and conse- term that can take on different meanings. From the
quences. review of literature, it is justifiable to use the
EMPIRICAL REFERENTS burden concept to examine both personal reactions
to caregiving and the effects of caregiving.
The final step in this analysis is to identify the
If this concept of burden is to be useful in
empirical referents that show how the concept is
nursing research, its meaning needs to be restricted
measured in the real world. In an effort to capture
in such a way as to give the concept clear theoreti-
subjective perception of burden, several research-
cal relevance. I have proposed a model (see figure
ers have generated various measures (Novack &
1) and a definition of burden as an individual’s
Guest, 1989; Whiteley et al., 1999; Zarit et al.,
1980). subjective perception of overload in one or more of
four perspectives: physical, psychological, social,
CONCLUSION and financial through the caregiving process that
Three major theoretical developments were iden- will address these issues. The goal of this concep-
tified in this concept analysis of burden. First, tual model is to provide a means of systematically
Hoenig, and Hamilton (1966) distinguished objec- and comprehensively describing the processes and
tive from subjective burden, and Platt (1985), characteristics of the caregiving systems specifi-
Montgomery et al. (1985), and Vitaliano et al. cally, with respect to how these components relate
(1991) further differentiated the distinction be- to the perception of burden. Only the major compo-
tween subjective and objective burdens. The sec- nents of the proposed model are identified. This
ond theoretical contribution was Zarit et al’s. model can be used not only in pediatrics, but also in
(1980) identification of the importance of percep- gerontology and by those working with adults
tion and the idea that burden was a product of a caring for an ill spouse.

Figure 1. Structural model of the caregiver burden model.


406 KUEI-RU CHOU

What is proposed is a new conceptual framework approach is that numerous conceptual frameworks
for the concept of burden. The conceptual frame- are occurring. The concept of burden is now
work that evolved from the analysis of the concept shifting from an atheoretical concept to an abstract
of burden unifies the research conducted by those conceptual framework, yet despite its abstractness,
using different definitions of burden. The proposed the concept analysis of burden presented in this
framework begins at a higher level of abstraction article provides a unique framework sufficiently
than previous research, but it also makes provisions flexible to encompass the diverse range of con-
for narrower classifications under each category. structs found in health studies. With the conceptual
Thus, there is hope that more generalizable and framework presented here, attention is not only
integrated results will be obtained from research drawn to the concept of burden but also to burden’s
studies. Finally, the framework focuses on caregiv- theoretical potential for future nursing intervention
ing as it relates to burden as a set of interrelated studies. Thus, for nursing, an attractive feature of
functions and it is comprehensive in scope. Thus, the burden concept is its ability to absorb the
there is hope that the conceptual framework will far-reaching notion of the inseparability between
provide a better understanding of burden as it the circumstances of caregiving and the domain of
relates to caregiving and will provide directions for burden. These conceptual and analytic perspectives
nursing interventions. may enable us to advance this concept and to
Studies related to burden have been largely identify the different sources of burden and their
exploratory and theoretical. The weakness of this consequences.

REFERENCES
Baronet, A.M. (1999). Factors associated with caregiver care: Managing chronic illness at home. San Francisco, CA:
burden in mental illness: A critical review of the research Jossey Bass.
literature. Clinical Psychology Review, 19(7), 819-841. Cuijpers, P. (1999). The effects of family interventions on
Bennett, D.S. (1994). Depression among children with chronic relatives’ burden: A meta analysis. Journal of Mental Health, 8,
medical problems: A meta-analysis. Journal of Pediatric Psychol- 275-285.
ogy, 19(2), 149-169. Davidhizar, R. (1994). Powerlessness of caregivers in home
Biegel, D.E., Song, L.Y., & Chakaravarthy, V. (1994). Predic- care. Journal of Clinical Nursing, 3(3), 155-158.
tors of caregiver burden among support group members of Deatrick, J.A., Knafl, K.A., & Walsh, M. (1988). The process
persons with chronic illness. E. Kahana, D.E. Biegel & M.S. of parenting a child with a disability: Normalization through
Wykle (Eds.) Family caregiving across the life-span (pp. accommodations. Journal of Advanced Nursing, 13(1), 15-21.
178-215). Thousand Oaks, CA: Sage. Dowler, J.M., Jordon-Simpson, D.A., & Adams, O. (1992).
Bililies, T.C. (1989). Ego development and the experience of Gender inequalities in caregiving in Canada. Health Reports,
burden among caregivers of the elderly. Unpublished disserta- 4(2), 125-136.
tion, University of Chicago. Fink, S.V. (1995). The influence of family resources and
Braithwaite, V. (1992). Caregiving burden: Making the con- family demands on the strains and well-being of caregiving
cept scientifically useful and policy relevant. Research on families. Nursing Research, 44(3), 139-145.
Aging, 14(1), 3-27. Glazer, N.Y. (1990). The home as workshop: Women as
Breslau, N. (1983). Care of disabled children and women’s amateur nurses and medical care providers. Gender & Society,
use of time. Medical Care, 21(6), 620-629. 4(4), 479-499.
Brickman, P., Rabinowitz, V.C., & Karuza, J. (1982). Models Grad, J., & Sainsbury, P. (1966). Problems of caring for the
of coping and helping. American Psychologist, 37(3), 368-384. mentally ill at home. Proceedings of the Royal Society of
Medicine, 59(1), 20-23.
Bull, M.J. (1990). Factors influencing family caregiver bur-
Helene, P.L. (1993). The relationship of the perceived sever-
den and health. Western Journal of Nursing Research, 12(6),
ity of behavioral disturbance and responsibility for behavioral
758-770.
disturbance to burden among primary caregivers of persons with
Carey, P.J., Oberst, M.T., McCubbin, M.A., & Hughes, S.H.
schizophrenia. Unpublished dissertation. University of Pennsyl-
(1991). Appraisal and caregiving burden in family members
vania.
caring for patients receiving chemotherapy. Oncology Nursing Hoenig, J., & Hamilton, M.W. (1966). The schizophrenic
Forum, 18(8), 1341-1348. patient in the community and his effect on the household.
Chakrabarti, S., Kulhara, P., & Verma, S.K. (1992). Extent International Journal of Social Psychiatry, 12(3), 165-176.
and determinants of burden among families of patients with Holaday, B., & Turner-Henson, P. (1991). Growing Up and
affective disorders. Acta Psychiatrica Scandinavica, 86(3), Going Out: A Survey of Chronically Ill Children’s Use of Time.
247-252. Final Report for Grant MAJ-060550. National Technical Infor-
Chen, M.Y. (1999). The effectiveness of health promotion mation Service, U.S. Department of Commerce, Springfield,
counseling to family caregivers. Public Health Nursing, 16(2), VA.
125-132. Horowitz, A., & Dobroff, F. (1982). The role of families in
Chou, K.R., LaMontagne, L.L., & Hepworth, J.T. (1999). providing long-term care to the frail and chronically ill elderly
Burden experienced by caregivers of relatives with dementia in living in the community. Cited in Mathews, S. (1988). The
Taiwan. Nursing Research, 48(4), 206-214. burdens of parent care: A critical evaluation of recent findings.
Coppel, D., Burton, C., Becker, J., & Fiore J. (1985). Journal of Aging Studies, 2(2), 157-165.
Relationships of cognition associated with coping reactions to Kazak, A.E. (1989). Families of chronically ill children: A
depression in spousal caregivers of Alzheimer’s disease pa- systems and social-ecological model of adaptation and chal-
tients. Cognitive Therapy and Research, 9(2), 253-266. lenge. Journal of Counseling and Clinical Psychology, 57,
Corbin, J.M., & Strauss, A.L. (1988). Unending work and 25-30.
CAREGIVER BURDEN: A CONCEPT ANALYSIS 407

Kiecolt-Glaser, J.K., Dura, J., Speicher, C.E., Trask, J., & on the family: An evaluation of some rating scales. Psychologi-
Glaser, R. (1991). Spousal caregivers of dementia victims: cal Medicine, 15(2), 383-393.
Longitudinal changes in immunity and health. Psychosomatic Poulshock, S.W., & Deimling, G.T. (1984). Families caring
Medicine, 53(4), 345-362. for elders in residence: Issues in the measurement of burden.
Knafl, K.A. (1993). Family response to a child’s chronic Journal of Gerontology, 39(2), 230-239.
illness: A description of major defining themes. In S. Frank & E. Reinhard, S.C. (1994). Perspectives on family’s caregiving
Tornquist (Eds.) Key aspects of caring for chronically ill: Home experience in mental illness. Image: Journal of Nursing Scholar-
and hospital. New York: Springer. ship, 26(1), 70-74.
Kosberg, J.I., Caril, R., & Keller, D.M. (1990). Components Robinson, K.M. (1990a). Predictors of burden among wife
of burden: Interventive implications. Gerontologist, 30(2), 236- caregivers. Scholarly Inquiry for Nursing Practice: An Interna-
242. tional Journal, 4(3), 189-203.
Kurnat, E.L., & Moore, C.M. (1999). Family matters: The Robinson, K. (1990b). Relationship between social skills,
impact of a chronic condition on the families of children with social support, self-esteem and burden in adult caregivers.
asthma. Pediatric Nursing, 25, 288-292. Journal of Advanced Nursing, 15(7), 788-795.
Lazarus, R.S., & Folkman, S. (1984). Stress appraisal and Romeis, J.C. (1989). Caregiver strain: Toward an enlarged
coping. New York: Springer. perspective. Journal of Aging and Health, 1(2), 188-208.
Loomis, L.S., & Booth, A. (1995). Multigenerational caregiv- Rowland, D. (1989). Financing of health care: A critical
ing and well-being. The myth of the beleaguered sandwich component. R.E.K. Stein (Ed.), Caring for children with chronic
generation. Journal of Family Issues, 16(2), 131-148. illness: Issues and strategies. New York: Springer.
Mastrian, K.G., Ritter, R.C., & Deimling, G.T. (1996). Sabbeth, B.F., & Leventhal, J.B. (1984). Marital adjustment
Predictors of caregiver health strain. Home Healthcare Nurse, to chronic childhood illness: A critique of the literature.
14(3), 209-217. Pediatrics, 73(6), 762-768.
Maurin, J.T., & Boyd, C.B. (1990). Burden of mental illness Schene, A.H. (1990). Objective and subjective dimensions of
on the family: A critical review. Archives of Psychiatric Nursing, family burden. Social Psychiatry Epidemiology, 25(6), 289-297.
6(2), 99-107. Schott-Baer, D. (1993). Dependent care, caregiver burden,
McCubbin, H.I. (1993). Culture, ethnicity, and the family: and self-care agency of spouse caregivers. Cancer Nursing,
Critical factors in childhood chronic illness and disabilities. 16(3), 230-236.
Pediatrics, 115 (Suppl. 5), 1063-1070. Singer, G.H., & Irvin, L.K. (1989). Support for caregiving
Monahan, D.J., Greene, V.L., & Coleman, P.D. (1992). families. Baltimore: Paul H. Brooks Publishing.
Caregiver support groups: Factors affecting use of services. Sisk, R.J. (2000). Caregiver burden and health promotions.
Social Work, 37(3), 254-260. International Journal of Nursing Studies, 37(1), 37-43.
Monsen, R.B. (1999). Mothers’ experience of living worried Skaff, M.M., & Pearlin, L.I. (1992). Caregiving: Role engulf-
when parenting children with spina bifida. Journal of Pediatric ment and the loss of self. The Gerontologist, 32(5), 656-664.
Nursing, 14(3), 157-163. Starn, J.R. (1996). Family culture and chronic conditions. P.L.
Montgomery, R., Gonyea, J.G., & Hooyman, N.R. (1985). Jackson & J.A. Vessey (Eds.) Primary care of the child with a
Caregiving and experience of subjective and objective burden. chronic condition. St. Louis: Mosby.
Family Relations, 34(1), 19-26. Tartasky, D.S. (1993). Hardiness: Conceptual and method-
Montgomery, R., Stull, D., & Borgatta, E. (1985). Measure- ological issues. Image, 25(3), 225-229.
ment and the analysis of burden. Research on Aging, 71(1), Thompson, E.H., & Doll, W. (1982). The burden of families
137-152. coping with the mentally ill: An invisible crisis. Family Rela-
Montgomery, R.V., & Datwyler, M.M. (1990). Women and tions, 31(3), 379-388.
men in the caregiving role. Generations, summer, 137-152. Tilden, V.P., & Galyen, R.D. (1987). Cost and conflict: The
Moser, D.K., Dracup, K., & Doering, L.V. (1999). Effect of darker side of social support. Western Journal of Nursing
cardiopulmonary resuscitation training for parents of high-risk Research, 9(1), 9-18.
members on perceived anxiety, control and burden. Heart and Turner-Henson, A., Holaday, B., Corser, N., Ogletree, G., &
Lung, 28(5), 326-333. Swan, J.H. (1994). The experience of discrimination: Chal-
Noh, S., & Avison, W.R. (1996). Asian immigrants and the lenges for chronically ill children. Pediatric Nursing, 20(6),
stress process: A study of Koreans in Canada. Journal of Health 571-577.
and Social Behavior, 37(2), 192-206. Vitaliano, P.P., Russo, J., Young, H.M., Becker, J., & Maiuro,
Novak, M., & Guest, C. (1989). Application of a multidimen- R.D. (1991). The screen for caregiver burden. The Gerontolo-
sional caregiver burden inventory. The Gerontologist, 29(6), gist, 31(1), 76-83.
798-803. Walker, L.O., & Avant, K.C. (1988). Strategies for theory
Noyes, J., Hartman, H., & Samuels, M. (1999). The experi- construction in nursing. Norwalk, CT: Appleton-Century-
ences and views of parents who care for ventilator-dependent Crofts.
children. Journal of Clinical Nursing, 8, 440-450. Whitley, E.M.G., Kristjanson, L.J., Denger, L.F., Yanofsky,
Ostwald, S.T. (1997). Caregiver exhaustion: Caring for the R., & Mueller, B. (1999). Measuring the care needs of mothers
hidden patients. Advanced Practice Nursing Quarterly, 3(2): of children with cancer: Development of the FIN-PED. Cana-
29-35. dian Journal of Nursing Research, 31(2), 103-123.
Parks, S.H., & Pilisuk, M. (1991). Caregiver burden: Gender Williams, P.P., Press, A., & Williams, A.R. (1999). Fatigue in
and the psychological costs of caregiving. American Journal of mothers of infants discharged to the home on apnea monitors.
Orthopsychiatry, 61(4), 501-509. Applied Nursing Research, 12(2), 69-77.
Pearlin, L.I. (1989). The sociological study of stress. Journal Woods, N.F., Haberman, M.R., & Packard, N.J. (1993).
of Health and Social Behavior, 30(3), 241-256. Demands of illness and individual, dyadic and family adapta-
Perlick, D., Clarkin, J.F., & Sirey, S. (1995). Caregiver tions in chronic illness. Western Journal of Nursing Research,
burden. Psychiatric Services, 46(8), 836-841. 15(1), 15-30.
Picot, S.J. (1995). Rewards, costs and coping of African Zarit, S.H., Reever, K.E., & Bach-Peterson, J. (1980). Rela-
American Caregivers. Nursing Research, 44(3), 147-152. tives of the impaired elderly: Correlates of feelings of burden.
Platt, S. (1985). Measuring the burden of psychiatric illness The Geronotologist, 20(6), 649-655.