Caregiver Burden and

This paper presents an expanded understanding of both burden and moral development, i d e n t ~ i n g the traits of burden as being essential components of moral deuelopment. Steps in the interpretation of bur& are shown to result in caregiuer decisions that may be life-giving, oppressive, or a combination of both. This new understanding of burden is then related to Folkman and Laza- rus’s (1 985) theory of stress and coping.

* * *

beast of burden; the burden of power; the lively bur- den at stanza’s end: each use of the term “burden” connotes a different nuance of a complex word. A Within the gerontological literature, burden is

frequently identified as a negative caregiver experience. “Stress” or “strain” are used interchangeably with the term. Although burden is a highly charged and elusive word, no clear definition of it has been consistently used by researchers studying its effects. Even so, theories of caregiver burden and programs to relieve burden have been developed at a rapid pace.

Use of the Term in Gerontological Studies The watershed study of caregiver burden was performed

by Zarit, Reever and Bach-Peterson (1980). In this study, the authors attempted to identify sources of burden. Although they offered no operational definition of burden, they indicate that “discomfort caused by . . . [problem] situations places burden upon the caregiver” (p. 651). Degree of burden was measured by a 29-item self-report inventory based on the researchers’ clinical experience with caregivers and prior studies. It was administered to primary caregivers of elderly persons with senile dementia. The only variable associated significantly with feelings of burden was number of visitors to the household. They were surprised that the extent of burden on the primary caregivers was not related to behavior prob- lems caused by the illness.

In the following years, other researchers used Zarit’s Bur- den Scale of Zarit et al. (1980). Drinka, Smith and Drinka (1987) studied the correlates of depression and burden for informal caregivers of patients from a geriatric referral clinic. Although the authors refer to prior uses of the term “burden”-“a general term denoting negative feelings” (p. 522)-they do not expand further the definition. How- ever, the hypothesis that caregivers are “burdened and depressed in response to the cognitive impairment or the dementia of those for whom they care” (p. 524), was not sup- ported by the data.

Burden, coping and health status were studied by Pratt, Wright and Schmall (1987) using a shortened version (20 of 29) of the Burden Scale of Zarit et al. The subjects were 240 caregivers of Alzheimer’s victims. They identified burden

Moral Development Sr. Susan Klein

generally as strain. Burden scores were inversely related both to health status and the caregivers’ morale levels.

Montgomery and Kamo (1987) studied subjective and objective burdens of sons and daughters in parental care. They found that sons experience equal burden despite less intensive roles. This was consistent with other literature that reports little or no relationship between tasks performed and caregiver level of burden. Yet it contradicts other reports indicating that males are less burdened than females.

Poulshock and Deimling (1984) found that diverse mea- sures and definitions of burden made difficult cross-study comparisons. They attempted to clarify the concept “care- giving burden” and urged a multidimensional perspective. The two measures used of caregiver burden were (a) impact on elder caregivers and other family relationships, and (b) impact on caregiver activities. Since no universally accepted or consistently operationalized definition was available, Poul- shock and Deimling presented two definitions:

[a] the concept of burden should be used to refer to the subjective percep- tions of caregivers related to the degree of problems experienced in rela- tion to elders’ specific impairments . . . [b] burden, as subjectively interpreted by caregivers, should be treated as an intervening measure between impairment and other more objective indicators of caregiving effects (p. 238)

It is left to others to refine the measurements of burden and impact indicators.

George and Gwyther (1986) built on Polshock & Deimling (1984) and others in their multidimensional examination of family caregiving. They suggest that

caregiver burden can profitably be measured in terms of discrete dimen- sions of well-being . . . [for] it appears that ‘caregiver burden’ and ‘caregiver well-being’ are but opposite sides of the same coin (p. 253).

Their findings unexpectedly reiterate Zarit et al. (1980) by suggesting that it is the characteristics of the caregiving situ- ation and availability of resources rather than condition of the care recipient, that affect most directly the well-being of the caregiver. The focus on caregivers’ perceptions rather than care recipient’s needs sharpens the picture of burden. It does not, however, clarify the inconsistencies and unexpected results of studies.

Variables affecting the experiences of caregivers of burden continue to be probed. A review of the history and develop- ment of the concept of burden itself as a variable opens new avenues of understanding into the complicated area of care- giver experiences.

Themes The earliest use of the term “burden” was in the Old Tes-

tament of the Bible. The Aramaic word in those days meant

Catholic University of America, Washington, DC. Correspondence to Caldwell Hall, Box 124. Catholic University of America, Washington, DC 20064.

Accepted for publication November 21,1988.

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L‘to lift, carry; to bear a heavy load” (Interpreter’s Dictionary of the Bible, 1962). The Greek and Hellenistic world of New Tes- tament times used the term in a variety of ways. A neutral use of the word indicated physical weight; this weight could be, for example, persons, animals, the freight of ships or of pregnancy. The word was also used to denote a fullness of well-being and a maturity of the body. Burden was used figu- ratively in two other important ways. Burden was understood as a thrust of active movement, a significant power. This power was of individual dignity or influence or the power of state and strength of arms. The pressure implied in this movement could have a force and violence attached to it and indicates the second common usage of the word, “oppressive suffer- ing.” Affliction of body or soul, depression, misery and dejection could all be viewed as burden.

The New Testament writers, however, made a significant change in the use of the word. They gave a new attitude toward the meaning of power, suffering and depression. There was merit to suffering (Schrenk, 1964). Burden was primarily referred to as apostolic suffering. From this burden of suffering came a “fullness of glory.” Thus there was no conflict between a burden that was experienced as both “weight” and glory.” Burdens were seen to be bearable because of the believers’ faith in and relationship to their lov- ing God.

Over the centuries, burden developed multiple meanings (Murray, Bradley, Craigie, & Onions, 1933). As early as 971 A.D , burden was identified as “a load of labor,” a sin, and sorrow. Burden was seen as an obligation which entailed a cost. Examples from 1000 through 1661 A . D , show another theme in the use of the term-that of life-giving activities. From the initial broad understanding of burden as load or weight, comes the use of burden in describing “that which is borne in the womb” and “what is borne by the soil.”

In the 1500s the Romantic “bourdon” was influenced by the English “burden,” and the two were fused into one. “Bourdon” referred to the refrain or chorus of a poem or song. Also, it meant the chief theme or prevailing sentiment of a topic. In modern times, the legal profession identifies burden as something oppressive or worrisome, something that is car- ried. There are burdens of proof, of going forward, of persua- sion and of producing evidence. Each involves obligation or “onus” (“disagreeable necessity” [Webster, 19671).

The economic leader, Abba P. Lerner, wrote of “the bur- den of debt” (1961). Lerner responds to then-President Eisenhower’s apparent desire that debt-financed public pro- jects be passed on to future generations. Lerner strongly stated that the burden of debt cannot be shifted to future generations. During the same era, there were frequent con- troversies over defense strategies. One such controversy focused on NATO’s burden sharing (Raj, 1983). In Raj’s discussion of the debate, the “U.S. carried too much of the load” rather than carrying a “fair share of the load” (p. 261). Burden was noted as a financial responsibility that should be only as high as warranted by a particular country’s financial situation. This “fair share” of burden greatly broadens its description and meaning: it implies that there is a certain level of burden that is seen as being “just,” beyond which it becomes “unjust.” Given the evolution and com- plexity of the term “burden,” it will help to elucidate its present boundaries. The parameters and definition of burden are shown in Figure 1.

I I Parameters

M O R A L I T Y

Definition II

NEUTRAL

NEGATIVE -1 POSITIVE

L COMBINED I ” II

Caregiver Burden and Moral Development

Volume 21, Number 2, Summer 1989 IJ

If burden is in fact a carrying of a load (albeit oppressive or powerful), and the load has specific ethical or philosophical boundaries, these must be incorporated into a working defini- tion. Current issues in bioethics include the discussion of distributive justice. Distributive justice refers to the proper distribution of social benefits and burdens (Beauchamp, 1982). “Paying taxes and being drafted into the armed serv- ices to fight a war are distributive burdens” (p. 31). Implied in burden is a sacrifice for a greater goal. The goal relates to social benefits. It has similarities with the New Testament suffering/glory view of burden. This view of burden clearly includes just ice.

Fairness and justice are used interchangeably. As pointed out by Schulman and Mekler (1985), children are taught to be fair-take turns and share limited resources. Everyone is equal and has the same rights (and responsibilities) to enjoy; herein lies the beginning of moral development.

The definition of moral development is extremely complex. Lawrence Kohlberg has been a contemporary leader in the study of sociocognitive moral development. He postulated a six-stage theory of moral development. These stages are delineated by Rosen (1980) into three categories: preconven- tional, conventional and postconventional. Kohlberg’s stages one and two present a deference to the superior power of authority (preconventional), followed by stages three and four advocating support of law because it is law. Stages five and six, postconventional stages, construct and comprehend general principles from which rules derive. Kohlberg’s stud- ies stem from research on male subjects. His view that women’s morality is lower on the developmental scale than are men has drawn harsh criticism. Gilligan (1982) analyzed Kohlberg and other writers in developmental moral psychol- ogy and reshaped the presentation of human experience-a view that explicates further the parameters of burden.

Gilligan (1982) sees women and men approaching moral maturation from two different perspectives. Both perspectives arrive at the same universal dilemma: the conjict between integ-

R E L A T I O N S H I P S

Figure I. Parameters and definition of burden.

Parameters of Burden

a c

Caregiver Burden and Moral Development

rip and care. Justice and morality of rules is highlighted by males. Equality and fairness, separation, and the ethic of rights is of greatest concern of men. The traditional standard for men’s self-assessment and success lies in great ideas and distinct activities. Power and separation can secure the male’s identity through the work role. Intimacy is the transformative experience for men, which leads them from adolescence to adulthood and generativity in their moral development. Men can discover the connectedness in their lives in the conver- gence of integrity with care.

According to Gilligan (1982), women’s morality is rooted in attachment. The standard of moral judgement that forms their assessment of self traditionally has been the standard of relationship and responsibility. Their primary ethic is of nur- turance, responsibility and care. Equity and the difference of needs is highlighted in women’s moral development. Women grow through choice, uniting responsibility with truth. They move from equivocation to truth. The truth of the ethic of care is the tie between relationship and responsi- bility.

Gilligan (1982) postulated that the human experience of moral development could be seen as the unity of two ethics: 1. The ethic of justice: A premise of equality (everyone

2 . The ethic of care: A premise of nonviolence (it is impor-

Gilligan concluded with the idea that the origin of aggression is the failure of the connection of these two ethics. The mean- ing of burden encompasses the ethics of both justice and care. A significant power of individual dignity or influence, the life-giving activity of birth, burden sharing, sacrifice for a greater goal, relationship with a personal God: each of these traits can be identified as components of moral development. The excesses of these elements-oppression, violence, misery and dejection-can be identified as extremes of the core con- cept of burden. The parameters of burden must include both justice and responsibility.

Experience of Burden The experience of burden is filtered through the moral and

ethical belief system of each person. This filtering produces interpretation of present realities based directly on one’s moral maturation. The caregiver’s perceived responsibility for and relationship with the care recipient will determine the level of burden felt by the caregiver. The experience of bene- fits and stresses by the caregiver will be directly related to the results of their moral judgments.

Interpretation of Burden

should be treated the same).

tant that no one be hurt).

There are tw-o antecedent variables that affect the interpre- tation of burden: level of moral development and moral judgment. An individual’s level of moral development will determine the options available for the moral judgment of personal actions. The burden will then be interpreted as being oppressive, life-giving or a combination of both (see Figure 2).

LIFE-GIVING - INTERPRETATION LEVEL

OF COMBINED I I- , 1 - [ BURDEN 1 1 ‘ - 1 DEVELOPMENT 1

Figure2. Steps in the interpretation of burden.

The following is an example of this process as it relates to caregivers. Mrs. G . is a frail 85-year-old wife of a severely demented Alzheimer’s victim. Mrs. G . must determine whether she should continue the individual care of her physi- cally robust husband now that he has recently become com- bative or whether she should place him in a nursing home. She believes that “for better or for worse . . . till death do us part” is a commitment she made that is permanent and binding. Her marriage vows must be kept for her to feel true to herself. Mrs. G. interprets her marriage vows to mean that she must stay with her husband and care for him while he is sick.

Mrs. G.’s identity is defined within the context of a marital relationship. She judges herself by the standards of responsi- bility and care. Her rigid interpretation of these commit- ments places her in a moral dilemma. She must make a choice. Mrs. G.’s desire to nurture others could be balanced by a broad understanding of responsibility and truth. As Gil- ligan (1982) would point out, an inclusive morality would call her to be true to herself and claim the right to count herself as one of those for whom she is morally responsible to care and protect. If, however, she chooses to focus on an ethic of rela- tionship and not balance that with an ethic of justice, she may put herself in physical danger. Mrs. G. interprets her burden as combined. She feels the self-affirmation of being true to her responsibilities while also experiencing the constant oppressive fear of physical harm. Mrs. G.’s interpretation of her burden is distorted. Extreme sacrifice outweighs the ben- efits of her choice.

Burden to Stress When burden is interpreted as being oppressive or as a

combination of life-giving and oppressive, stress will result. Following Folkman and Lazarus’ (1985) theory of stress and coping, a process to mediate the stress will be initiated. In the case of Mrs. G . , a cognitive appraisal of her dilemma will judge it to be neither irrelevant nor benign but, rather, stress- ful. She will therefore begin a dynamic process of evaluating her resources and options, moving toward a coping strategy.

The burden of Mr. G.’s newly developed combativeness was the precipitating variable for the interpretation of burden-to-stress movement. Mrs. G. was forced to examine the moral and ethical roots of her being in response to her husband’s disturbing changes. This filtering of burden through her belief system led to an interpretation of the bur- den as one of three options: life-giving, combined or oppres- sive. Perceiving burden as a combination of “suffering and glory,” yet experiencing it as an overload of suffering, Mrs. G. became greatly stressed.

The level of moral development on which judgments are based is deeply personal and intrinsically complex. The indi- vidual’s very identity will be intertwined with the judgments that flow from these moral and ethical beliefs. It is at the level of burden interpretation that professional nurses may take their rightful roles in treatment of “human responses to health and to illness” (American Nurses Association, 1980). Nurses have the professional responsibility to assist people in their adaptation to changing environments of health and ill- ness. It is at this critical moment of interpretation and framing of burden that nurses can most effectively offer clari- fication, support and guidance to burdened caregivers. Health promotion at such pivotal moments is the essence of clinical nursing practice.

96 IMAGE: Journal OfNumng Scholadip

Caregiver Burden and Moral Development ________ Rnsen, H. (1980) The development of sociomoral knowledge. New York: Columbia

University Press. Conclusion

Caregiver burden is a multidimensional Concept. Well- Schrenk, G. (1964). In G . Kittel (Ed.) Theological dictionary of the new testament beine and stress are closely aliened to burden. Burden is not, (Vol I ) (pp 553 561) Grand Rapids, 11. Eerdmans

v , -

however, a lack of well-being or a synonym for stress. Burden is a load that is carried. The carrying Of this load demands a sacrifice but results in a benefit that can equal or exceed the

Schulman, M. , & Mekler, E. (1985). Bringing up a moral child. Reading, MA: Addison-Wesley Publishins.

MA: G . & C . Merriam. Wehster, A M . (1967). Webster’s seventh new collegiate dictionary. Springfield,

sacrifice. The human experience of burden is interpreted in one of four ways: (a) as neutral-not of significant sacrifice or benefit; (b) as negative or (c) as positive-with sacrifice or benefit greatly outweighing the other; and (d) as a combina- tion-the clear realization of sacrifice with the personal receipt of an equal reward for the sacrifice. The parameters of burden are marked by two ethics: the ethic of justice and the ethic of care. When these two markers are kept in balance, burden will be a load carried gladly. 8

Zarit, S. H., Reever, K. E., & Bach-Peterson, J . (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20(6), 649-655

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selected economic writings of Abba P. Lerner (pp. 311-313) New York: New York Press.

Montgomery, R. J . V., & Kamo, Y. (1987, November). Differences between sons and daughters in parental caregiving. Paper presented at the meeting of the Ger- ontological Society of America, Washington, IIC.

Murray, J. A. H., Bradley, H. , Craigie, W. A,, & Onions, C . T. (Eds.) (1933). The Oxford English dictionary (Vol. I ) . Oxford: Clarendon Press.

Poulshock, S. W. , & Deimling, G . T. (1984). Families caring for elders in residence: Issues in the measurement of burden. Journal of Gerontology, 39(2), 230-240.

Pratt. C.. Wright, S.. & Schmall, V. (1987). Burden, coping and health status: A com- parison 01 family caregivers to community dwelling and institutionalized Alzheimer’s patients. Journal of Gerontological Social Work, 10( 1 , 2), 99-1 12.

Raj, C. S. (1983). American military in Europe: Controversy over NATO burden sharing. New Delhi, India: ABC Publishing House.

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Volume 21, Number 2 , Summer 1989 97