The Relationship Between CaregiverBurden and Self-Care Deficits inFormer Rehabilitation Patients

Ruby Watson, MSN RNCNaomi N. Modeste, DrPH CHESOlivia Catolico, MSN RNCMarisa Crouch, BSN RN

This study examined the relation­ship between caregiver burden andself-care deficit informer rehabilita­tion patients. Wehypothesized that asself-care deficit increases, so does thelevel of caregiver burden. We em­ployed Spearman correlationalanaly­sis and stepwise multiple regressionanalyses; the mean caregiver burdenscore was 25.9 (SD = 17.1), indicat­ing mild to moderate burden. Care­giver burden was significantly corre­lated with social cognition deficit (r= 0.438, P = .001), communicationdeficit (r = 0.430, P = .001), and self­care deficit (r =.426, p =.002). Sig­nificant predictors ofburden were so­cial cognition deficit (~ = .408, p =.0018), self-care deficit (~ = .322, P=.0100), and caregiverage (~= .369,p = .0312).

Address correspondence to RubyWatson, MSN RNC, PO Box 847,Loma Linda, CA 92354.

The study of caregiver burden was brought to the forefront of research by Zarit, Reev­er, and Bach-Peterson (1980), who sparked ongoing interest and subsequent studies byother researchers. The majority of the studies related to caregiving burden have focusedon the care of psychiatric patients (Jones & Jones, 1994; Pearson, Verma, & Nellet,1988; Solomon & Draine, 1995), the elderly (Barnes, Given, & Given, 1992; Billig,1991; Malonebeach & Zarit, 1991; Soldo & Myllyluoma, 1983; Stevens, Walsh, & Bald­win, 1993), and those with chronic illness and functional impairments (Harrison & Cole,1991; Smith, Smith, & Tose1and, 1991; Stuitbergen, 1990).

Burden is defined as a load, something borne as a duty, an obligation, or a responsi­bility often with labor or difficulty (Webster's Third New International Dictionary, 1981).In a study by Zarit, Todd, and Zarit (1986), burden was described as "the extent to whichcaregivers perceived their emotional or physical health, social life and financial statusas suffering as a result of caring for their relatives" (p. 261).

Perceptions of burden may differ among caregivers who manage the same workload(Dura, Stukenberg, & Kiecolt-Glaser, 1991). This difference in caregivers' responsemay be due to the type of illness, the level of care required, the available support sys­tem, and the relationship of the caregiver to the patient. Age, gender, health status, fi­nancial stability, and the caregiver's ability to cope are other considerations. Complaintsof excess burden may be due to guilt feelings (Macera, Eaker, Jannarone, Davis, &Stoskoff, 1993) or other unresolved issues.

Burden has been examined from an objective and a subjective viewpoint. Objectiveburden refers to the amount of time and the number of tasks involved in caregiving,whereas subjective burden relates to the caregiver's emotional feelings, attitudes, andoverall perception of caregiving responsibilities (Biegel, Milligan, Putnam, & Song,1994; Montgomery, Gonyea, & Hooyman, 1985; Solomon & Draine, 1995). Most fam­ily caregivers are wives (Given, Stomrnel, Collins, King, & Given, 1990; Parks & Pil­isuk, 1991; Soldo & Myllyluoma, 1983; Spaid & Barusch, 1994; Wilson, 1990; Wyk­le, 1994); the next-largest category is daughters and daughters-in-law (Brody, 1981;Finley, Roberts, & Banahan, 1988). Studies of male caregivers (Brody & Schoonover,1986; Harris, 1993) point to gender-specific roles, although husbands provide morehands-on care for their spouses, whereas sons tend to meet needs related to transporta­tion, finances, and home repairs.

Regardless of the amount and the nature of the care provided, the family remains a vi­tal resource for the professional healthcare team. Current trends in healthcare delivery andthe recentDepartment ofVeterans Affairs(VA)restructuring strategies necessitate greaterfamily involvement in patient care and in overall health maintenance in the home setting.

The promotion of self-care (i.e., the ability to function independently in all activitiesof daily living [ADLs]) can result in a feeling of well-being among patients and can ul­timately relieve burden on caregivers. Orem's self-care nursing model (1971) and Zaritet al.'s burden concept (1980) are relevant to this study. We hypothesized that as self­care deficit increases, so would the level of caregiver burden.

258 Rehabilitation Nursing> Volume 23, Number 5· Sep/Oct 1998

MethodSubjects: Fifty-two patients discharged home from a reha­

bilitation unit of a southern California VA medical center andtheir live-in caregivers participated in this study. Only patientshaving some degree of disability, requiring assistance withADLs, and residing within a 50-mile radius of the facility wereincluded in the study.

Instruments: The Functional Independence Measure(FIMTM) instrument. The FIM instrument (Granger, Hamilton,Keith, Zielezny, & Sherwin, 1986), a standardized measure de­veloped by the Uniform Data System for Medical Rehabilitation,was used to measure the level of self-care deficit. The patient'sfunctional abilities are assessed and scored from 1 (i.e., a care­giver is required to perform the patient's care because the pa­tient is incapable of performing self-care) to 7 (i.e., the patientis completely independent and no caregiver is needed). As­sessment and scoring are based on what the patient actuallydoes and not on what he or she should be able to do. The FIMinstrument has six categories and 18 functional items. The max­imum total score is 126, indicating full independence, and thelowest total score is 18, indicating that total assistance is re­quired (i.e., the patient expends no effort toward self-care).Deficits were determined by subtracting the patient's actualscore from the maximum score.

The Burden Interview. The Zarit Burden Interview, a 22-itemquestionnaire, was used to measure subjective caregiver bur­den. Responses on this 5-point scale range from 0 (never) to 4(nearly always). Two subscales that have been identified fromthis measure relate to personal strain and role strain (Whitlatch,Zarit, & VonEye, 1991). The degree ofburden was determinedby adding the numerical responses; higher scores (61-88) indi­cate greater burden. The reliability and validity of this instru­ment have been well established (Whitlatch et al.).

Data collection procedures: A home visit of approximate­ly 45 minutes was conducted for each participant between 2months and 20 months after discharge. Informed consent wasobtained from both patients and caregivers. The FIM instru­ment was used according to established guidelines. The care­giver completed the questionnaire separately from the patientto allow the caregiver more freedom and openness (see Figure1). We also obtained demographic information about the pa­tients and caregivers.

Data analysis: A bivariate correlation analysis was con­ducted first to determine which of the variables were associat­ed with the caregiver burden score. Variables such as demo­graphic characteristics and patient's functional status (i.e.,subcategory deficit scores from the FIM instrument) were con­sidered. Stepwise multiple regression analyses were carried outto reveal potential predictors of caregiver burden (see Table 1).

ResultsPatients ranged in age from 43.9 to 90.5 years old, with a

mean age of 67.5 years. Of the 52 patient participants, 96%were men and 4% were women. The major rehabilitation di­agnoses were cerebrovascular accident, total knee replacement,and total hip replacement. Caregivers ranged in age from 24.4

Figure 1. Caregiver Questionnaire

Instructions: The following is a list of statements that re­flects how people sometimes feel when taking care of anoth­er person. After each statement, circle how often you feel thatway: never, rarely, sometimes,frequently, or nearly always.There are no right or wrong answers.

1. Do you feel that your relative asksfor more help thanhe/she needs?

2. Do you feel that because of the time you spend with yourrelative that you don't have enough time for yourself?

3. Do you feel stressed between caring for your relative andtrying to meet other responsibilities for your family orwork?

4. Do you feel embarrassed over your relative's behavior?5. Do you feel angry when you are around your relative?6. Do you feel that your relative currently affects your

relationship with other family members or friends in anegative way?

7. Are you afraid about what the future holds for yourrelative?

8. Do you feel your relative is dependent upon you?9. Do you feel strained when you are around your relative?

10. Do you feel your health has suffered because of yourinvolvement with your relative?

11. Do you feel that you don't have as much privacy as youwould like because of your relative?

12. Do you feel that your social life has suffered because youare caring for your relative?

13. Do you feel uncomfortable about having friends overbecause of your relative?

14. Do you feel that your relative seems to expect you to takecare of himlher as ifyou were the only one he/she coulddepend on?

15. Do you feel that you don't have enough money to carefor your relative in addition to the rest of your expenses?

16. Do you feel that you will be unable to take care of yourrelative much longer?

17. Do you feel you have lost control of your life since yourrelative's illness?

18. Do you wish you could just leave the care of yourrelative to someone else?

19. Do you feel uncertain about what to do about yourrelative?

20. Do you feel you should be doing more for your relative?21. Do you feel you could do a better job in caring for your

relative?22. Overall, how burdened do you feel in caring for your

relative?

Reprinted with permission from "Relatives of the Impaired Elderly:Correlates of 'Feelings of Burden,''' by S.E. Zarit., K.E. Reever, & J.Bach-Peterson, 1980, The Gerontologist, 20, pp. 649-655.

Rehabilitation Nursing> Volume 23, Number 5 • Sep/Oct 1998 259

Caregiver Burden and Self-Care Deficits

Table 1. Multiple Regression Model for CaregiverBurden

Table 2. Selected Characteristics of Patients andCaregivers (N =52 pairs)

Mean N Percentage SDVariableSocialcognitionSelf-care deficitCaregiver age(Constant)

B­2.8660.574

-0.42018.484

~0.4080.322

-0.369

P.0018.0100.0312

Patients (n =52)Age 67.5 11.54

to 88.7 years old, with a mean age of 61.6 years. The averagelength of time in the caregiver role was 6.3 years (see Table 2).

The mean, median, mode, and frequency distribution wereassessed for each variable using the Statistical Package for theSocial Sciences (SPSS) software. Spearman's correlation wasused to assess associations between variables. The mean care­giver burden score was 25.9 (SD =17.1). This score signifi­cantly correlated with the following variables in the Spearmancorrelationanalysis: social cognitiondeficit (r= 0.438,p =.001),communication deficit (r = 0.430,p = .001), self-care (r = 0.426,p = .002), locomotion deficit (r = 0.322, p = .020), and transferdeficit (r = 0.305, p = .28). We found no significant correlationbetween caregiver burden score and other variables.

The variables in the stepwise multiple regression analysisincluded the patient's age, gender, and functional status and thecaregiver's age, gender, and length of time in the caregiver role.Social cognition deficit, self-care deficit, and the caregiver'sage were significant predictors, explaining 15%, 12%, and 4%of the total variance in the caregiver burden score, respective­ly. The more severe the deficits in the patient's cognition andself-care capacity, the higher the burden score for the caregiv­er, and the younger the caregiver, the higher the burden score.

DiscussionOverall, the findings supported our hypothesis regarding the

relationship between self-care deficits (including motor andcognitive functions) and caregiver burden. Social cognitiondeficit demonstrated the strongest correlation with caregiverburden and was the most significant predictor of burden. Thisresult is consistent with previous studies related to burden(Browning & Schwirian, 1994; Deimling & Bass, 1986).

Based on estimates of the degree of burden and a mean bur­den score of 25.9, caregiver burden in this study was assessed ,as mild to moderate. This result could be a reflection of helpfulprograms within the VAsystem such as case management, theavailabilityof respite care, and the knowledge that nursing homeplacement, if needed, could be obtained through the VA for aperiod of time or for an indefinite stay, based on eligibility.Guidance for caregivers was readily available through the VAsocial work service. One caregiver in this study, when askedabout the support she received after her husband's stroke, said,"The VA took care of the equipment, and that was abig help."

Implications for nursing practiceThe results of this study have several practice implications

for nurses and other healthcare professionals.

260 Rehabilitation Nursing> Volume 23, Number 5· Sep/Oct 1998

GenderMale 50Female 2

Ethnic backgroundCaucasian 41AfricanAmerican 6Hispanic 5

Marital statusMarried 40Not married 12

Most frequent diagnosesCerebral vascularaccident 17Totalknee replacement 7Totalhip replacement 4Laminectomy 4

Caregivers (n =52)Age 61.58

GenderMale 4Female 48

Ethnic backgroundCaucasian 36AfricanAmerican 4Hispanic 6

Marital statusMarried 40Not married 12

EducationGraduate school 2College 15Highschool 29

Household incomeLess than$10,000 8$10,000-15,000 16$15,000-20,000 9$20,000-25,000 9More than$25,000 10

96.23.8

78.8U.59.6

76.923.1

32.713.57.77.7

7.792.3

69.27.7

U.5

76.923.1

3.828.855.8

15.430.817.317.319.2

14.96

Patients' communication and social cognition deficits:Early identification of these deficits can be achieved through on­going assessment during home visits and regular clinic visits. AMini-Mental Status Examination should be done when indicat­ed to establish functional baselines and identify limitations.

Development of the family's coping skills and behavioralresponses to the patient's illness and self-care deficits: Be­cause caregivers sometimes neglect their own care, they shouldbe included in self-care promotion. Healthcare providers shouldbe aware of appropriate coping strategies and should be pre­pared to counsel caregivers as needed. One area of caregiverconcern is time management, as noted by Smith et al. (1991).One coping strategy used by a spouse caregiver in this studywas simply to call "time out" and go for a long walk.

Self-care promotion can result in a feelingofwell-being among patients and can

relieve burden on caregivers.

The provision of respite care: Respite care is availablethrough VAnursing home care units or may be arranged throughcontract nursing homes for eligible veterans. The purpose ofrespite care should be reinforced; some caregivers are hesitantto relinquish the caregiving role and have reported that the pa­tient is reluctant to permit or accept personal care from some­one other than the caregiver. In-home respite care can be ob­tained through federal or state-funded programs for those whoqualify. It is important to note that "respite care that is usedwhen the caregiver's health has failed is not, by definition, truerespite" (Gaynor, 1989, p. 123). Day care programs and the ac­tive involvement of other family members can also provide re­lief for the primary caregiver in the home setting.

Referrals for rehabilitation services: Physical therapy, oc­cupational therapy, and speech therapy can be provided in thehome setting 1:0 increase the patient's functional level, educatethe caregiver on coping techniques, and prevent early institu­tionalization.

ConclusionsBecause this study consisted of former rehabilitation patients

who were functioning at a high level of self-care, comparisonstudies are suggested. A comparison of patients who have un­dergone rehabilitation with those who have not is warranted, asis a comparison of caregiver burden among service-connectedveterans and nonservice-connected veterans. The impact of casemanagement programs on home care could also be studied. Inaddition, research could be conducted on patients with similardiagnoses or on cohort groups.

Threeofthe authorsare affiliatedwith the Jerry L Pettis VA Hos­pital in LomaLinda,CA:Ruby Watsonis an ambulatorycarecasemanager,OliviaCatolico is the directorofeducationand researchin nursing service, and Marisa Crouch is a hospital-based casemanager.NaomiModesteis an associateprofessorat LomaLindaUniversityin LomaLinda,CA.

ReferencesBarnes, C.L., Given, B.A, & Given, C.W. (1992). Caregivers of elderly

relatives: Spouses and adult children. Health & Social Work, 17,282-289.Biegel, D.E., Milligan, S.E., Putnam, P.L., & Song, L.-Y. (1994). Predic­

tors of burden among lower socioeconomic status caregivers of persons withchronic mental illness. Community Mental Health Journal, 30,473-493.

Billig, N. (1991). Attitude and burden in families of depressed elderly pa­tients: Strategies for care. Southern Medical Journal, 84, 225-228.

Brody, E.M. (1981). "Women in the middle" and family help to older peo­ple. The Gerontologist, 21,471-480.

Brody, E.M., & Schoonover, C.B. (1986). Patterns of parent-care whenadult daughters work and when they do not. The Gerontologist, 26,372-381.

Browning, J.S., & Schwirian, P.M. (1994). Spousal caregivers' burden:Impact of care recipient health problems and mental status. Journal ofGeron­tological Nursing, 20(3), 17-22.

Deimling, G.T., & Bass, D.M. (1986). Symptoms of mental impairmentamong elderly adults and their effects on family caregivers. Journal ofGeron­tology, 41, 778-784.

Dura, J.R., Stukenberg, KW., & Kiecolt-Glaser, J.K (1991). Anxiety anddepressive disorders in adult children caring for demented parents. Psycholo­gy and Aging, 6,467-473.

Finley, N.J., Roberts, M.D., & Banahan, B.F. (1988). Motivators and in­hibitors of attitudes of filial obligation toward aging parents. The Gerontolo­gist, 28, 73-78.

Gaynor, S.E. (1989). When the caregiver becomes the patient. GeriatricNursing, 10, 120-123.

Given, B., Stommel, M., Collins, C., King, S., & Given, C. W. (1990). Re­sponses of elderly spouse caregivers. Research in Nursing & Health, 13,77­85.

Granger, C.V., Hamilton, B.B., Keith, RA., Zielezny, M., & Sherwin, F.S.(1986). Advances in functional assessment for medical rehabilitation. Topicsin Geriatric Rehabilitation, 1(3),59-74.

Harris, P.B. (1993). The misunderstood caregiver? A qualitative study ofthe male caregiver of Alzheimer's disease victims. The Gerontologist, 33, 551­556.

Harrison, D.S., & Cole, KD. (1991). Family dynamics and caregiver bur­den in home health care. Clinics in Geriatric Medicine, 7, 817-829.

Jones, S.L., & Jones, P.K (1994). Caregiver burden: Who the caregiversare, how they give care and what bothers them. Journal ofHealth and SocialPolicy, 6(2),71-89.

Macera, C.A, Eaker, E.D., Jannarone, R.I., Davis, D.R, & Stoskoff, C.H.(1993). A measure ofperceived burden among caregivers. Evaluation and theHealth Professionals, 16, 204-2 11.

Malonebeach, E.E., & Zarit, S.H. (1991). Current research issues in care­giving to the elderly. International Journal ofAging and Human Development,32,103-114.

Montgomery, R.I.V., Gonyea, 1.G., & Hooyman, N.R. (1985). Caregivingand the experience of subjective and objective burden. Family Relations, 34,19-26.

Orem, D.E. (1971). Nursing: Concepts ofpractice. New York: McGraw­Hill.

Parks, S.H., & Pilisuk, M. (1991). Caregiver burden: Gender and the psy­chological costs of caregiving. American Journal ofOrthopsychiatry, 61, 501­509.

Pearson, J., Verma, S., & Nellett, C. (1988). Elderly psychiatric patient sta­tus and caregiver perceptions as predictors of caregiver burden. The Geron­tologist, 28,79-82.

Smith, G.C., Smith, M.F., & Toseland, RW. (1991). Problems identifiedby family caregivers in counseling. The Gerontologist, 31, 15-21.

Soldo, B.I., & Myllyluoma, J. (1983). Caregivers who live with dependentelderly. The Gerontologist, 23, 605-611.

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Stevens, G.L., Walsh, R.A., & Baldwin, B.A. (1993). Family caregivers ofinstitutionalized and noninstitutionalized elderly individuals. Nursing ClinicsofNorth America, 28,349-362.

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Wilson, V. (1990). The consequences of elderly wives caring for disabledhusbands: Implications for practice. Social Work, 3, 417-421.

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

Zarit, S.H., Todd, P.A., & Zarit, J.M. (1986). Subjective burden ofhus­bands and wives as caregivers: A longitudinal study. The Gerontologist, 26,260-266.

IR.h.bA MODEL OF REHABILITATION FOR

THE 21 ST CENTURY.

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BRAIN INJURY PROGRAM COORDINATORTo fill this challenging role, we will accept applications from Registered Nurses, PhysicalTherapists, Occupational Therapists, and Speech Language Pathologists.

The selected individual will collaborate closely with the new Medical Director. This opportunityaffords a compassionate, dedicated clinician anexciling and expanded role that goes wellbeyond traditional program development and coordination. Here, you will utilize your clinicalexpertise todevelop aninterdisciplinary team of professionals treating brain injury patientsthrough the continuum ofcare from minimally responsive toacommunity re-entry level. Dayto day, you will be responsible forresolving operations issues, developing policies, andanticipating future program needs. Inaddition, you will oversee patienVfamily education aswell asdeveloping positive relationships with referring facilities while educating them aboutourunique program.

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262 Rehabilitation Nursing> Volume 23, Number 5 • Sep/Oct 1998

AcknowledgmentThe authors acknowledge M. Anthony C. Frankson, MBBS

MPH, Sharon Newton, OTR, Qian Zhang, MPH, and all theothers who helped make this research project possible.

This continuing education offering (codenumber RNC-137) will provide I contact hourto those who read this article and completethe application form on page 280.

This independent study offering is appropri­ate for all rehabilitation nurses. By readingthis article, the learner will achieve the following objectives:1. Identify at least two variables that are significant predictors of

caregiver burden.2. Explain the difference between objective and subjective burden.3. List at least two resources available to reduce caregiver burden.