Public Health Nursing Vol. 9 No. 2, pp. 128-132 0737- 1209/92/$6.00 0 1992 Blackwell Scientific Publications, Inc.
Use of Formal Community Resources by Spouse Caregivers of Chronically Ill Adults Betty Winslow, R.N., M.S., and Ruth O’Brien, Ph.D., R.N.
As the American population ages, the need increases
Abstract This descriptive correlational study examined the for long-term health care of chronically ill older people. use of formal community resources of spouse caregivers of progressively chronically ill individuals. The convenience Researchers, policy makers, and professionals deliversample was 61 individuals with a definitive diagnosis of mul- ing social services and health care are focusing more
tiple sclerosis and their spouse caregivers. Results indicated that 34.4% of the sample used community resources. Relationships among caregiver demographics, extent of caregiving tasks, subjective burden, perceived uncertainty of the caregiver, functional incapacity of the chronically ill individual, level of social support, and the use of formal community resources were analyzed. Positively correlated (P< 0.05) with the criterion variable of use of formal community resources were the variables of caregiver age (rpb= 0.342), number of caregiving tasks (rpb= 0.4241, caregiver employment level (x2 = 8.25), and functional incapacity of the care receiver (rpb= 0.565). Results of discriminate function analysis indicated that three variables, functional incapacity, caregiver age, and number of caregiving tasks, correctly classified users versus nonusers of community resources 83.6% of the time.
attention on the informal care of these noninstututionalized people. According to Brody (1985), family members provide as much as 80% to 90% of household tasks, transportation and shopping, and medically related and personal care. In addition to care provided by family members, demands are placed on formal community resources to assist in the care of chronically ill adults. For health professionals, especially nurses, this means an increased need to provide health care to these clients in their own homes. A descriptive profile of family caregivers, their needs and their concerns, and how these affect the use of community resources has become increasingly important. This study was designed to add to the body of knowledge of long-term community care of chronically ill individuals.
PURPOSE OF STUDY The purpose of this descriptive correlational study was to examine the use of formal community resources by spouse caregivers of progressively chronically ill individuals. The following specific research questions were addressed: Betry Winslow is doctoral student, University of Colorado Health Sciences Center, Denver, Colorado and assistant professor of Nursing, Pacific Union College, Angwin, California. Ruth O’Brien is associafe professor and division head, Human Care Nursing: Communities and Organizations. University of Colorado, Health Sciences Center, Denver, Colorado. Address correspondence to B e f t y Winslow, R . N . , Department of Nursing, Pacific Union College, Angwin, C A 94S08.
128
1 . What proportion of these Caregivers use formal community resources? 2. What types of formal community resources and hours per week of service used by the caregivers? 3. Is there a relationship between the criterion variable Of Or nonuSe Of community and the variables of caregiver age, education level, em-
Winslow and O’Brien: Use of Community Resources by Caregivers
ployment, sex, subjective burden, perceived uncertainty, extent of caregiving tasks, family income, supportiveness of the social network, and functional incapacity of the chronically ill adult? 4. To what extent can these caregivers be categorized as potential users or nonusers of community resources? RELATED LITERATURE
129
caregiver’s burden. Sex differences are seen in the types of formal resources used by caregivers, with men using more assistance with housekeeping and nursing care tasks. More recent studies focused on the factors related to caregiving stress and highlighted the variables of caregiving burden and social support (Fitting et al., 1986; Novak & Guest, 1989; Pett et al., 1988; Robinson, 1988).
METHODS Most research efforts on family caregivers have focused on those who tend the elderly. Many studies attempted Sample to describe the use of informal and formal caregiver resources. The profile of home care service recipients re- The sample included 61 individuals with a diagnosis of veals that they are primarily widowed women over age multiple sclerosis and their spouse caregivers. The age 75, with decreased functional ability, more chronic ill- of the caregivers ranged from 33 to 77 years (mean 55.2 ness, and perceived poor health (Chappell, 1985). More- yrs). The caregivers were well educated, with 40 (65.6%) over, most older persons who use long-term care assis- having more than a high school education. Family incomes tance also rely on the informal support network, when varied widely, with 41 (68.3%) couples reporting an annual available, for assistance with both household tasks and income of $20,000 or more. Of the 61 caregivers, 49.2% (30) were not employed and the other 50.9% (31) were personal care. employed either part or full time. Men made up 55.7% The reported use of formal services by the primary (34) of the caregiver sample and women 44.3% (27). caregivers of the frail elderly ranges widely from as little as 9.7% (Stone, Cafferata, & Sangl, 1987) to as much as Instruments 80% (Snyder & Keefe, 1985). Increase in physical disability was identified as a key predictor of the amount The extent of caregiving was measured using the typolof assistance used (Branch & Jette, 1983). Noelker and ogy of caregiving tasks (Montgomery, Gonyea, & Bass (1989) reported that higher levels of physical im- Hooyman, 1985). The array of 15 tasks included such pairment in the care recipient and care-related health items as bathing, dressing, toileting, bed transfer, changes in the primary caregiver, in particular, predict wheelchair transfer, assistance with walking, medicathe use of formal services. Their research also showed tions, treatments, feeding, meal preparation, and housethat the caregiver’s sex is a factor differentiating which work. From this typology, two scores related to the types of service combinations are used. Women more number of tasks performed and the number of hours per commonly used formal resources to supplement their week spent in caregiving as a whole were computed. The I3-item, 5-point Likert scale subjective burden caregiving, whereas men used formal services to provide care different from that they were providing. Results of the inventory, also developed by Montgomery and colfirst national estimates of informal caregivers to noninsti- leagues (1989, was used to measure subjective burden. tutionalized disabled elders showed that the caregivers It consists of items related to attitudes and feelings such are predominantly women, over age 65, and that only a as “I feel useful in my relationship with my relative.” minority used additional assistance from formal ser- Respondents were asked how often they experienced each of the 13 items, and a total score was computed for vices (Stone, Cafferata, & Sangl, 1987). Social support variables also appear to have a direct this measure. Reliability for subjective burden was reand positive influence on the use of formal service as ported as an alpha of 0.86 (Montgomery et al., 1985). both enabling factors and buffers between poor health Reliability for the sample in the present study was comfunctioning and use of services by the elderly (Wan, puted as alpha 0.72. Caregiver-perceived uncertainty was examined with 1987). Other researchers found that family support is positively associated with caregivers’ coping effective- the 29-item, 5-point, Likert-type Mishel uncertainty in ness (Scott, Roberto, & Hutton, 1986), whereas nursing illness scale (MUIS) (Mishel, 1981). This instrument home placement of the care recipient is strongly asso- measures the level of perceived uncertainty in symptociated with the subjective burden of the caregiver (Zarit, mology, diagnosis, treatment, relationships with caregivers, and future plans. A sample item is “I don’t know Todd, & Zarit, 1986). In sum, the literature seems to support a profile of pre- what is wrong with him (her). A total scale score was dominantly female, middle-aged caregivers for chronically used in this analysis, with the higher score representing ill adults. Use of formal resources seems to increase with a higher level of uncertainty. Reliability estimates for the recipient’s impairment and with an increase in the the total scale were reported as 0.92 (Mishel & Braden, ”
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Volume 9 Number 2 June 1992
1988). Results of three validation studies showed support for construct and convergent validity (Mishel, 1981). The reliability estimate for this study was 0.87. The Kurtzke incapacity scale was used to assess the functional ability of the care receiver (Slater, 1981). This instrument, which was developed specifically for patients with MS, measures 16 aspects of personal functioning on a 5-point Likert scale. Among the items are stair climbing, ambulation, chair or bed transfer, toilet transfer, bathing, dressing, bowel and bladder function, and feeding. The care receivers scored their level of incapacity on each of these items from 0 = “normal” to 4 = “task needing to be completed by someone else.” The total score possible is 64, with a higher score indicating a higher level of incapacity. Comparisons between the incapacity scale and other scales measuring functional ability have yielded correlations of 0.84 and 0.87, documenting construct validity (Kurtzke, 1981). Data regarding the degree of supportiveness and unsupportiveness of the overall social network were assessed on a 6-point, Likert-type scale through a semistructured interview format developed by Hirsch (1979) and modified by Fiore, Becker, and Coppel (1983). It includes five categories of support-socializing, tangible assistance, cognitive guidance, social reinforcement, and emotional support. Subjects were asked to rate social network members on two separate scales, helpful and upsetting, with ranges from “not at all” to “extremely” on each of the five categories. A sum of the ratings across the five categories was used to compute mean supportiveness and unsupportiveness scores for the overall social network. The mean score range is from 5 to 30, with the high score equaling a high degree of supportiveness or unsupportiveness. The degree of unsupportiveness in a relationship was related to severity of depression in a correlation study by Fiore et al. (l983), which supports criterion validity. Face validity is demonstrated by the categories of support being the most commonly identified in the literature (Fiore et al., 1983).
Procedure
The study sample was selected from the population serviced by an MS society in upstate New York. A list of potential subjects who met the criteria of having a definite diagnosis of MS and having a spouse caregiver were contacted by mail and invited to participate in the study. For patients agreeing to participate, the participation of their spousal caregiver was then sought. Data were collected from couples in which the caregiver and care receiver both agreed to participate. Written informed consent was obtained from both partners prior to data collection. Through the use of a combined semistructured interview and structured questionnaire, data were collected in subjects’ homes. A portion of the questionnaire was self-completed by the subjects. To facilitate openness of responses and preserve confidentiality, separate interviews were conducted with the chronically ill spouse and his or her caregiver whenever possible.
RESULTS
In relation to research questions 1 and 2, the proportion of caregivers who used community resources was 34.4% (21). The types of community resources used and the hours per week of service used are summarized in Table 1. Home health aide-homemaker services and occupational or vocational assessment were the services used most frequently. They also consumed the greatest number of hours per week. For the purposes of this study the 0.05 level of significance was selected. Statistical analysis was completed using SYSTAT (Wilkenson, 1986) and SPSSPC + (SPSS, Inc., 1987). Relative to question 3, the relationship between each of the categorical variables of caregiver education level, employment, sex, family income, and the criterion variable of use of community resources was analyzed using the chi-square statistic. Caregiver education level, sex, and family income were not associated significantly with the use of community resources. A
TABLE 1. Types of Community Resources and Hours Per Week Used Resource
Users No.
%
Total Hours*
Nonusers No.
%
Home health aid/ homemaker
9
14.8
243
52
85.2
Visiting nurse Physical therapy
6 2 9
9.8 3.3 14.8
30 4 23
55 59 52
90.2 96.7 85.2
Occupational or vocational assessment
*Representstotal hours per week for all caregivers combined.
Winslow and O’Brien: Use of Community Resources by Caregivers
13 1
TABLE 2. Point-Biserial Correlations of Independent Variables With Use of Community Resources ‘pb
F
P Value
0.342 0.140 0.424 0.104 - 0.079 0.565 - 0.069 0.065
7.835 1.179 12.952 0.650 0.369 27.665 0.282 0.254
0.007* 0.282 0.001t 0.423 0.546
Variable Caregiver age Hours in caregiver tasks Number of caregiver tasks Subjective burden Perceived uncertainty Functional incapacity Supportiveness of social network Unsupportiveness of social network
o.ooot 0.597 0.616
*Significant at P = 0.01. Significant at P 0.001.
significant association was found between caregiver employment and use of community resources (x2 = 8.25; df = 2; P = 0.016). Caregivers who were employed full time were less likely to use community resources than those who were employed part time or not at all. Correlations of the continuous independent variables with the dichotomous criterion variable of use of community resources were analyzed using the point biserial correlation coefficient (rpb)statistic. The rpbis a productmoment correlation and is interpreted in the same manner as the Pearson r statistic (Lindeman, Merenda, & Gold, 1980). The relationships between each of the independent variables of hours in caregiving tasks, subjective burden, perceived uncertainty, and supportiveness and unsupportiveness of the social network with the criterion variable of use of community resources were not statistically significant (Table 2). A significant positive correlation was found between caregiver age, the number of caregiving tasks, and the functional incapacity of the care receiver with the use of community resources. Research question 4 was examined with discriminate function analysis, using the method that minimized Wilk’s lambda and minimum tolerance (alpha) of 0.001 (minimum F to enter = 1.00). The most logical variables of caregiver age, number of caregiving tasks, functional incapacity, caregiver employment, and hours spent in caregiving tasks were entered. Results indicated that three of the variables, functional incapacity, caregiver age, and number of caregiving tasks, correctly classified users versus nonusers of community resources 83.6%of the time. This group of predictors was slightly more accurate in predicting potential nonuser status (85%)than user status (81%). DISCUSSION Comparison of the demographic profile of the sample in this study with the previously reported literature reveals
that the mean age of 55.2 years of caregivers is only slightly younger than the mean age of 57.3 years in the national survey (Stone, Cafferata, and Sangl, 1987). Studies also tended to suggest that the bulk of care is provided by informal sources, with formal community resources providing less. In this study 34.4% of caregivers used formal community resources, which falls within the range found in other research. In contrast, 55.7% of the caregivers in this study were men, whereas most studies found that the majority were women. Multiple sclerosis tends to affect more women than men, a ratio of 1.5:1, and would explain the tendency for spouse caregivers of individuals with this disease process to be men (Sheinberg, 1987). An unexpected finding was the association between employment and use of community resources. The finding that caregivers employed full-time are less likely to use community resources, however, should be viewed in relation to the age of the caregiver and the incapacity of the. care receiver. Older caregivers are more likely than younger ones to be retired and may also require assistance with their tasks. The higher level of incapacity may have some impact on the employment of the caregiver and could also account for this finding. Additional research and analysis are merited to examine this finding further and to provide potential explanations. The significant findings of this study suggest that correlations exist between each of the variables of caregiver employment level, caregiver age, functional incapacity of the care receiver, and extent of caregiving tasks and the use of community resources. Interpretation of the discriminate function analysis indicates a profile of potential users of community resources by spouse caregivers of chronically ill adults that is consistent with previous research. That profile includes caregivers who are older and have more caregiving tasks to perform, and whose spouses have a higher level of functional incapacity. Implications of these findings for com-
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Volume 9 Number 2 June 1992
munity health nurses, who may be involved in providing of disability in multiple sclerosis. Acta Neurologica Scandinavica 64, (Supplementum 87) 110-129. professional care to chronically ill adults, should be considered. In assessing these families, nurses might Lindeman, R. H . , Merenda, P. F., & Gold, R. Z. (1980). Zntroduction to bivariate and multivariate analysis. Glenexpect caregivers who €it this profile to be most likely view, IL: Scott, Foresman. to require or to use community resources. Early case Mishel, M. H. (1981). The measurement of uncertainty in illfinding and provision of services may help to extend ness. Nursing Research, 30, 258-263. and enhance the caregiving experience. Mishel, M. H., & Braden, C. J. (1988). Finding meaning: AnFor health professionals and health policy planners tecedents of uncertainty in illness. Nursing Research, 37, the findings suggest that home health aide-homemaker 98-1 12. services, as indicated by both frequency of use and Montgomery, R. J. V., Gonyea, J. G., & Hooyman, N. R. number of hours per week of use, are a necessary for(1985). Caregiving and the experience of subjective and obmal community resource. As the general population in jective burden. Family Relations, 34, 19-26. this country ages and increasing numbers of individuals Noelker, L. S., & Bass, D. M. (1989). Home care for elderly persons: Linkages between formal and informal caregivers. are providing care for family members, the need for Journal of Gerontology, 44(2), S62-S70. such services is likely to continue to rise. Further research of the variables related to use of Novak, M., & Guest, C. (1989). Caregiver response to Alzheimer’s disease. International Journal of Aging and Hucommunity resources with the purpose of identifying man Development, 28( l), 67-79. predictive variables of use is important for health planPett, M. A., Caserta, M. S., Hutton, A. P., & Lund, D. A. ning and policy making. The variables of social support, (1988). Intergenerational conflict: Middle-aged women carsubjective burden, perceived uncertainty, and caregiver ing for demented older relatives. American Journal of Oremployment as they relate to use of community rethopsychiatry, 58, 405-417. sources also merit investigation. Robinson, K. M. (1988). A social skills training program for ACKNOWLEDGMENT This study was funded through the Center for the Study of Psychopathology of the Elderly, Department of Psychiatry, School of Medicine, University of Rochester, where Dr. O’Brien was a faculty associate. REFERENCES Branch, L. G., & Jette, A. M. (1983). Elders’ use of informal long-term care assistance. Gerontologist, 23( I), 51-56. Brody, E. M. (1985). Patient care as a normative family stress. Gerontologist, 25( 1), 19-29. Chappell, N. L. (1985). Social support and the receipt of home care services. Gerontologist, 25, 46-54. Fiore, J., Becker, J., & Coppel, D. B. (1983). Social network interactions: A buffer or a stress. American Journal of Community Psychology, 1 1 , 423-438. Fitting, M., Rabins, P., Lucas, M . J., & Eastham, J. (1986). Caregivers for dementia patients: A comparison of husbands and wives. Gerontologist, 26, 248-252. Hirsch, B. J. (1979). Psychological dimensions of social networks: A multimethod analysis. American Journal of Community Psychology, 7 , 263-277. Kurtzke, J. F. (1981). A proposal for a uniform minimal record
adult caregivers. Advances in Nursing Sciences, 10(2), 5972. Scott, J. P., Roberto, K. A., & Hutton, J. T. (1986). Families of Alzheimer’s victims family support to the caregivers. Journal of the American Geriatrics Society, 34, 348-354. Sheinberg, L. C. (Ed.). (1987). Multiple sclerosis: A guide for patients and their families (2nd ed.). New York: Raven Press. Slater, R. J. (1981). Functional disability ratings: Medical, social and economic implications (summary of discussions). Acta Neurologica Scandinavica, 64, 105-129. Snyder, B., & Keefe, K. (1985). The unmet needs of family caregivers for frail and disabled adults. Social Work in Health Care, 10(3), 1-14. Stone, R., Cafferata, G. L., & Sangl, J. (1987). Caregivers of the frail elderly: A national profile. Gerontologist, 27, 616626. SPSS, Inc. (1987). Statistical package for the social sciences, SPSSIPC + V 2.0 [computer program]. Chicago: Author. Wan, T. T. H. (1987). Functionally disabled elderly: Health status, social support, and use of health services. Research on Aging, 9(1), 61-78. Wilkenson, L. (1986). SYSTAT: The system for statistics [computer program]. Evanston, IL: SISTAT. Zarit, S. H., Todd, P. A., & Zarit, J. M. (1986). Subjective burden of husbands and wives as caregivers: A longitudinal study. Gerontologist, 26, 260-266.
Use of Formal Community Resources by Spouse Caregivers of Chronically Ill Adults Betty Winslow, R.N., M.S., and Ruth O’Brien, Ph.D., R.N.
As the American population ages, the need increases
Abstract This descriptive correlational study examined the for long-term health care of chronically ill older people. use of formal community resources of spouse caregivers of progressively chronically ill individuals. The convenience Researchers, policy makers, and professionals deliversample was 61 individuals with a definitive diagnosis of mul- ing social services and health care are focusing more
tiple sclerosis and their spouse caregivers. Results indicated that 34.4% of the sample used community resources. Relationships among caregiver demographics, extent of caregiving tasks, subjective burden, perceived uncertainty of the caregiver, functional incapacity of the chronically ill individual, level of social support, and the use of formal community resources were analyzed. Positively correlated (P< 0.05) with the criterion variable of use of formal community resources were the variables of caregiver age (rpb= 0.342), number of caregiving tasks (rpb= 0.4241, caregiver employment level (x2 = 8.25), and functional incapacity of the care receiver (rpb= 0.565). Results of discriminate function analysis indicated that three variables, functional incapacity, caregiver age, and number of caregiving tasks, correctly classified users versus nonusers of community resources 83.6% of the time.
attention on the informal care of these noninstututionalized people. According to Brody (1985), family members provide as much as 80% to 90% of household tasks, transportation and shopping, and medically related and personal care. In addition to care provided by family members, demands are placed on formal community resources to assist in the care of chronically ill adults. For health professionals, especially nurses, this means an increased need to provide health care to these clients in their own homes. A descriptive profile of family caregivers, their needs and their concerns, and how these affect the use of community resources has become increasingly important. This study was designed to add to the body of knowledge of long-term community care of chronically ill individuals.
PURPOSE OF STUDY The purpose of this descriptive correlational study was to examine the use of formal community resources by spouse caregivers of progressively chronically ill individuals. The following specific research questions were addressed: Betry Winslow is doctoral student, University of Colorado Health Sciences Center, Denver, Colorado and assistant professor of Nursing, Pacific Union College, Angwin, California. Ruth O’Brien is associafe professor and division head, Human Care Nursing: Communities and Organizations. University of Colorado, Health Sciences Center, Denver, Colorado. Address correspondence to B e f t y Winslow, R . N . , Department of Nursing, Pacific Union College, Angwin, C A 94S08.
128
1 . What proportion of these Caregivers use formal community resources? 2. What types of formal community resources and hours per week of service used by the caregivers? 3. Is there a relationship between the criterion variable Of Or nonuSe Of community and the variables of caregiver age, education level, em-
Winslow and O’Brien: Use of Community Resources by Caregivers
ployment, sex, subjective burden, perceived uncertainty, extent of caregiving tasks, family income, supportiveness of the social network, and functional incapacity of the chronically ill adult? 4. To what extent can these caregivers be categorized as potential users or nonusers of community resources? RELATED LITERATURE
129
caregiver’s burden. Sex differences are seen in the types of formal resources used by caregivers, with men using more assistance with housekeeping and nursing care tasks. More recent studies focused on the factors related to caregiving stress and highlighted the variables of caregiving burden and social support (Fitting et al., 1986; Novak & Guest, 1989; Pett et al., 1988; Robinson, 1988).
METHODS Most research efforts on family caregivers have focused on those who tend the elderly. Many studies attempted Sample to describe the use of informal and formal caregiver resources. The profile of home care service recipients re- The sample included 61 individuals with a diagnosis of veals that they are primarily widowed women over age multiple sclerosis and their spouse caregivers. The age 75, with decreased functional ability, more chronic ill- of the caregivers ranged from 33 to 77 years (mean 55.2 ness, and perceived poor health (Chappell, 1985). More- yrs). The caregivers were well educated, with 40 (65.6%) over, most older persons who use long-term care assis- having more than a high school education. Family incomes tance also rely on the informal support network, when varied widely, with 41 (68.3%) couples reporting an annual available, for assistance with both household tasks and income of $20,000 or more. Of the 61 caregivers, 49.2% (30) were not employed and the other 50.9% (31) were personal care. employed either part or full time. Men made up 55.7% The reported use of formal services by the primary (34) of the caregiver sample and women 44.3% (27). caregivers of the frail elderly ranges widely from as little as 9.7% (Stone, Cafferata, & Sangl, 1987) to as much as Instruments 80% (Snyder & Keefe, 1985). Increase in physical disability was identified as a key predictor of the amount The extent of caregiving was measured using the typolof assistance used (Branch & Jette, 1983). Noelker and ogy of caregiving tasks (Montgomery, Gonyea, & Bass (1989) reported that higher levels of physical im- Hooyman, 1985). The array of 15 tasks included such pairment in the care recipient and care-related health items as bathing, dressing, toileting, bed transfer, changes in the primary caregiver, in particular, predict wheelchair transfer, assistance with walking, medicathe use of formal services. Their research also showed tions, treatments, feeding, meal preparation, and housethat the caregiver’s sex is a factor differentiating which work. From this typology, two scores related to the types of service combinations are used. Women more number of tasks performed and the number of hours per commonly used formal resources to supplement their week spent in caregiving as a whole were computed. The I3-item, 5-point Likert scale subjective burden caregiving, whereas men used formal services to provide care different from that they were providing. Results of the inventory, also developed by Montgomery and colfirst national estimates of informal caregivers to noninsti- leagues (1989, was used to measure subjective burden. tutionalized disabled elders showed that the caregivers It consists of items related to attitudes and feelings such are predominantly women, over age 65, and that only a as “I feel useful in my relationship with my relative.” minority used additional assistance from formal ser- Respondents were asked how often they experienced each of the 13 items, and a total score was computed for vices (Stone, Cafferata, & Sangl, 1987). Social support variables also appear to have a direct this measure. Reliability for subjective burden was reand positive influence on the use of formal service as ported as an alpha of 0.86 (Montgomery et al., 1985). both enabling factors and buffers between poor health Reliability for the sample in the present study was comfunctioning and use of services by the elderly (Wan, puted as alpha 0.72. Caregiver-perceived uncertainty was examined with 1987). Other researchers found that family support is positively associated with caregivers’ coping effective- the 29-item, 5-point, Likert-type Mishel uncertainty in ness (Scott, Roberto, & Hutton, 1986), whereas nursing illness scale (MUIS) (Mishel, 1981). This instrument home placement of the care recipient is strongly asso- measures the level of perceived uncertainty in symptociated with the subjective burden of the caregiver (Zarit, mology, diagnosis, treatment, relationships with caregivers, and future plans. A sample item is “I don’t know Todd, & Zarit, 1986). In sum, the literature seems to support a profile of pre- what is wrong with him (her). A total scale score was dominantly female, middle-aged caregivers for chronically used in this analysis, with the higher score representing ill adults. Use of formal resources seems to increase with a higher level of uncertainty. Reliability estimates for the recipient’s impairment and with an increase in the the total scale were reported as 0.92 (Mishel & Braden, ”
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Volume 9 Number 2 June 1992
1988). Results of three validation studies showed support for construct and convergent validity (Mishel, 1981). The reliability estimate for this study was 0.87. The Kurtzke incapacity scale was used to assess the functional ability of the care receiver (Slater, 1981). This instrument, which was developed specifically for patients with MS, measures 16 aspects of personal functioning on a 5-point Likert scale. Among the items are stair climbing, ambulation, chair or bed transfer, toilet transfer, bathing, dressing, bowel and bladder function, and feeding. The care receivers scored their level of incapacity on each of these items from 0 = “normal” to 4 = “task needing to be completed by someone else.” The total score possible is 64, with a higher score indicating a higher level of incapacity. Comparisons between the incapacity scale and other scales measuring functional ability have yielded correlations of 0.84 and 0.87, documenting construct validity (Kurtzke, 1981). Data regarding the degree of supportiveness and unsupportiveness of the overall social network were assessed on a 6-point, Likert-type scale through a semistructured interview format developed by Hirsch (1979) and modified by Fiore, Becker, and Coppel (1983). It includes five categories of support-socializing, tangible assistance, cognitive guidance, social reinforcement, and emotional support. Subjects were asked to rate social network members on two separate scales, helpful and upsetting, with ranges from “not at all” to “extremely” on each of the five categories. A sum of the ratings across the five categories was used to compute mean supportiveness and unsupportiveness scores for the overall social network. The mean score range is from 5 to 30, with the high score equaling a high degree of supportiveness or unsupportiveness. The degree of unsupportiveness in a relationship was related to severity of depression in a correlation study by Fiore et al. (l983), which supports criterion validity. Face validity is demonstrated by the categories of support being the most commonly identified in the literature (Fiore et al., 1983).
Procedure
The study sample was selected from the population serviced by an MS society in upstate New York. A list of potential subjects who met the criteria of having a definite diagnosis of MS and having a spouse caregiver were contacted by mail and invited to participate in the study. For patients agreeing to participate, the participation of their spousal caregiver was then sought. Data were collected from couples in which the caregiver and care receiver both agreed to participate. Written informed consent was obtained from both partners prior to data collection. Through the use of a combined semistructured interview and structured questionnaire, data were collected in subjects’ homes. A portion of the questionnaire was self-completed by the subjects. To facilitate openness of responses and preserve confidentiality, separate interviews were conducted with the chronically ill spouse and his or her caregiver whenever possible.
RESULTS
In relation to research questions 1 and 2, the proportion of caregivers who used community resources was 34.4% (21). The types of community resources used and the hours per week of service used are summarized in Table 1. Home health aide-homemaker services and occupational or vocational assessment were the services used most frequently. They also consumed the greatest number of hours per week. For the purposes of this study the 0.05 level of significance was selected. Statistical analysis was completed using SYSTAT (Wilkenson, 1986) and SPSSPC + (SPSS, Inc., 1987). Relative to question 3, the relationship between each of the categorical variables of caregiver education level, employment, sex, family income, and the criterion variable of use of community resources was analyzed using the chi-square statistic. Caregiver education level, sex, and family income were not associated significantly with the use of community resources. A
TABLE 1. Types of Community Resources and Hours Per Week Used Resource
Users No.
%
Total Hours*
Nonusers No.
%
Home health aid/ homemaker
9
14.8
243
52
85.2
Visiting nurse Physical therapy
6 2 9
9.8 3.3 14.8
30 4 23
55 59 52
90.2 96.7 85.2
Occupational or vocational assessment
*Representstotal hours per week for all caregivers combined.
Winslow and O’Brien: Use of Community Resources by Caregivers
13 1
TABLE 2. Point-Biserial Correlations of Independent Variables With Use of Community Resources ‘pb
F
P Value
0.342 0.140 0.424 0.104 - 0.079 0.565 - 0.069 0.065
7.835 1.179 12.952 0.650 0.369 27.665 0.282 0.254
0.007* 0.282 0.001t 0.423 0.546
Variable Caregiver age Hours in caregiver tasks Number of caregiver tasks Subjective burden Perceived uncertainty Functional incapacity Supportiveness of social network Unsupportiveness of social network
o.ooot 0.597 0.616
*Significant at P = 0.01. Significant at P 0.001.
significant association was found between caregiver employment and use of community resources (x2 = 8.25; df = 2; P = 0.016). Caregivers who were employed full time were less likely to use community resources than those who were employed part time or not at all. Correlations of the continuous independent variables with the dichotomous criterion variable of use of community resources were analyzed using the point biserial correlation coefficient (rpb)statistic. The rpbis a productmoment correlation and is interpreted in the same manner as the Pearson r statistic (Lindeman, Merenda, & Gold, 1980). The relationships between each of the independent variables of hours in caregiving tasks, subjective burden, perceived uncertainty, and supportiveness and unsupportiveness of the social network with the criterion variable of use of community resources were not statistically significant (Table 2). A significant positive correlation was found between caregiver age, the number of caregiving tasks, and the functional incapacity of the care receiver with the use of community resources. Research question 4 was examined with discriminate function analysis, using the method that minimized Wilk’s lambda and minimum tolerance (alpha) of 0.001 (minimum F to enter = 1.00). The most logical variables of caregiver age, number of caregiving tasks, functional incapacity, caregiver employment, and hours spent in caregiving tasks were entered. Results indicated that three of the variables, functional incapacity, caregiver age, and number of caregiving tasks, correctly classified users versus nonusers of community resources 83.6%of the time. This group of predictors was slightly more accurate in predicting potential nonuser status (85%)than user status (81%). DISCUSSION Comparison of the demographic profile of the sample in this study with the previously reported literature reveals
that the mean age of 55.2 years of caregivers is only slightly younger than the mean age of 57.3 years in the national survey (Stone, Cafferata, and Sangl, 1987). Studies also tended to suggest that the bulk of care is provided by informal sources, with formal community resources providing less. In this study 34.4% of caregivers used formal community resources, which falls within the range found in other research. In contrast, 55.7% of the caregivers in this study were men, whereas most studies found that the majority were women. Multiple sclerosis tends to affect more women than men, a ratio of 1.5:1, and would explain the tendency for spouse caregivers of individuals with this disease process to be men (Sheinberg, 1987). An unexpected finding was the association between employment and use of community resources. The finding that caregivers employed full-time are less likely to use community resources, however, should be viewed in relation to the age of the caregiver and the incapacity of the. care receiver. Older caregivers are more likely than younger ones to be retired and may also require assistance with their tasks. The higher level of incapacity may have some impact on the employment of the caregiver and could also account for this finding. Additional research and analysis are merited to examine this finding further and to provide potential explanations. The significant findings of this study suggest that correlations exist between each of the variables of caregiver employment level, caregiver age, functional incapacity of the care receiver, and extent of caregiving tasks and the use of community resources. Interpretation of the discriminate function analysis indicates a profile of potential users of community resources by spouse caregivers of chronically ill adults that is consistent with previous research. That profile includes caregivers who are older and have more caregiving tasks to perform, and whose spouses have a higher level of functional incapacity. Implications of these findings for com-
132 Public Health Nursing
Volume 9 Number 2 June 1992
munity health nurses, who may be involved in providing of disability in multiple sclerosis. Acta Neurologica Scandinavica 64, (Supplementum 87) 110-129. professional care to chronically ill adults, should be considered. In assessing these families, nurses might Lindeman, R. H . , Merenda, P. F., & Gold, R. Z. (1980). Zntroduction to bivariate and multivariate analysis. Glenexpect caregivers who €it this profile to be most likely view, IL: Scott, Foresman. to require or to use community resources. Early case Mishel, M. H. (1981). The measurement of uncertainty in illfinding and provision of services may help to extend ness. Nursing Research, 30, 258-263. and enhance the caregiving experience. Mishel, M. H., & Braden, C. J. (1988). Finding meaning: AnFor health professionals and health policy planners tecedents of uncertainty in illness. Nursing Research, 37, the findings suggest that home health aide-homemaker 98-1 12. services, as indicated by both frequency of use and Montgomery, R. J. V., Gonyea, J. G., & Hooyman, N. R. number of hours per week of use, are a necessary for(1985). Caregiving and the experience of subjective and obmal community resource. As the general population in jective burden. Family Relations, 34, 19-26. this country ages and increasing numbers of individuals Noelker, L. S., & Bass, D. M. (1989). Home care for elderly persons: Linkages between formal and informal caregivers. are providing care for family members, the need for Journal of Gerontology, 44(2), S62-S70. such services is likely to continue to rise. Further research of the variables related to use of Novak, M., & Guest, C. (1989). Caregiver response to Alzheimer’s disease. International Journal of Aging and Hucommunity resources with the purpose of identifying man Development, 28( l), 67-79. predictive variables of use is important for health planPett, M. A., Caserta, M. S., Hutton, A. P., & Lund, D. A. ning and policy making. The variables of social support, (1988). Intergenerational conflict: Middle-aged women carsubjective burden, perceived uncertainty, and caregiver ing for demented older relatives. American Journal of Oremployment as they relate to use of community rethopsychiatry, 58, 405-417. sources also merit investigation. Robinson, K. M. (1988). A social skills training program for ACKNOWLEDGMENT This study was funded through the Center for the Study of Psychopathology of the Elderly, Department of Psychiatry, School of Medicine, University of Rochester, where Dr. O’Brien was a faculty associate. REFERENCES Branch, L. G., & Jette, A. M. (1983). Elders’ use of informal long-term care assistance. Gerontologist, 23( I), 51-56. Brody, E. M. (1985). Patient care as a normative family stress. Gerontologist, 25( 1), 19-29. Chappell, N. L. (1985). Social support and the receipt of home care services. Gerontologist, 25, 46-54. Fiore, J., Becker, J., & Coppel, D. B. (1983). Social network interactions: A buffer or a stress. American Journal of Community Psychology, 1 1 , 423-438. Fitting, M., Rabins, P., Lucas, M . J., & Eastham, J. (1986). Caregivers for dementia patients: A comparison of husbands and wives. Gerontologist, 26, 248-252. Hirsch, B. J. (1979). Psychological dimensions of social networks: A multimethod analysis. American Journal of Community Psychology, 7 , 263-277. Kurtzke, J. F. (1981). A proposal for a uniform minimal record
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