Home health nurses and case managers take full advantage of available resources to ensure clients who are frail can remain at home. They call on and coordinate the services of other home care personnel, draw on other community agencies, secure needed equipment, and rely on the commitment of family caregivers. Success often hinges on the sacrifices of family caregivers who provide most of the round-the-clock care. That care can be an extreme burden on the caregivers who are often elderly and have multiple health problems.
With the cuts in home health care that accompanied the Balanced Budget Act of 1997 (Health Care Financing Administration, 1997), home health nurses must rely on family caregivers even more often. After the client is no longer eligible for Medicare-reimbursable home health care, the family caregiver is entirely responsibile for the client's care.
Recognizing the importance of family caregivers, home health nurses attempt to provide them with information, equipment, and emotional support. Although the family caregiver role is recognized as physically and emotionally taxing, home health nurses do not routinely assess the health of the family caregiver. The nurse may recruit a family caregiver into the client's treatment plan without knowledge of the caregiver's health status - yet, the caregiver's health status affects their ability to fulfill their caregiver role. In addition, the demands of the caregiver role can further negatively affect caregiver health. When otherwise avoidable hospitalization or institutionalization of a client occurs, all are negatively affected - the client, the family caregiver, and the home health care agency which loses revenue.
The need for nurses to conduct systematic assessments of family caregivers first became apparent to the author when she began placing nursing students with home care agencies for clinical experience in community health nursing. During this experience, senior students in a baccalaureate program were required to conduct family assessments. It became evident that some of the family caregivers had many health problems. In some cases, the family caregiver's needs were greater than those of the family member admitted to the home health agency. It is ironic that home health agencies, which use coundess resources to market their services, may be overlooking a population in need of home health in the very homes in which they are already providing services.
In light of this information, questions arose: How often do family caregivers have unmet health and referral needs and how often do family caregivers need home health services? The answers to these questions are not only important to the home health client, family caregiver, and home health agency, but also to the country's budget. When compared to any other country in the world, America spends the highest percentage of gross national product on health care. However, home health nurses depend on family caregivers to provide much care at home. Arno, Levine and Memmott (1999) used national data sets to estimate the value of informal caregiving for ill and disabled adults at $196 billion in 1997. That amount dwarfs the national expenditures for home health care ($32 billion) and nursing home care ($83 billion). Thus, family caregivers save billions of dollars that would otherwise be required for institutionalization.
A pilot study was initially conducted using nursing students' assessments of 51 family caregivers. It was found that 46 (90.2%) of these caregivers required health teaching, 48 (94.1%) required referrals to other health care providers or community agencies, and 14 (27.5%) required home health services themselves (Bradley & Alpers, 1996). This study was conducted to determine whether the findings would be similar to those of the pilot study if home health nurses assessed the family caregivers. The pilot study findings may have been influenced by selection or researcher bias. The students may have selected families with caregivers who had more unmet needs man typical of caregivers of home health clients. The researchers may have introduced researcher bias in the data collection phase because they determined the need for referral, teaching, or home health care from the students' data.
In this study, home health nurses were used to collect the data. The specific research questions were:
* What are the unmet health needs of older family caregivers?
* How frequendy are family caregivers in need of health teaching?
* How frequendy are family caregivers in need of referral?
* How frequendy are family caregivers potentially eligible for Medicare-reimbursable home health services?
Review of Literature
The literature portrays family caregiving as both a physical and emotional burden. In a national interview study of 437 spouse caregivers, Mui (1995) found that caregiver emotional strain was the strongest common predictor of poor perceived caregiver health and of caregiver functional limitations. In addition, wife caregivers' poor health was correlated with care recipients' perceived unmet needs and increased depression. Longer caregiver duration predicted poor health status in husband caregivers. Wife caregivers had poorer health, with 63% of them reporting fair or poor health, compared to 50.7% of the husband caregivers.
In a 4-year prospective study between 1993 and 1998 Schulz and Beach (1999) compared 392 caregivers with 427 noncaregivers ages 66 to 96 years, all of whom were living with their spouses. Caregivers experiencing caregiver strain had mortality risks 63% higher than noncaregiving controls. Caregivers who did not experience caregiver strain did not have increased mortality rates. Schulz and Beach concluded that "being a caregiver who is experiencing mental or emotional strain is an independent risk factor for mortality among elderly spousal caregivers" (1999, p. 2215).
Sisk (2000) investigated the effects of caregiving on the ability of 121 predominandy female caregivers to implement their own health promotion behaviors. Those with lower subjective burden practice more health promoting behaviors than those with higher subjective burden scores.
Faison, Faria, and Frank (1999) found a positive correlation between increased activities of care performed by the caregiver and caregiver burden in a sample of 88 caregivers of elderly chronically ill individuals. This included direct care, such as bathing, and indirect care, such as preparing meals and doing housework. The researchers suggested dut nurses must conduct family assessment with the aim to improve functional status and delay or prevent institutionalization.
Bull, Maruyama, and Luo (1995) conducted a prospective study on the family caregivers of elderly family members admitted to the hospital for congestive heart failure, diabetes mellitus, or chronic obstructive pulmonary diseases. Data were collected on 346 caregiver and care recipient dyads the day before hospital discharge, at 2 weeks post-discharge and 2 months post-discharge. There was no significant change in caregivers' physical or functional health during the 2 months following hospitalization, but caregivers' response and coping 2 weeks post-discharge were direcdy linked to caregiver health. Poorer health was linked to greater burden. The researchers point out that assessment of family members' health before hospital discharge might provide nurses with information on potential health risks in the caregiving situation.
Perhaps most descriptive of the emotional impact of caregiving is the grounded-theory study of the caregiving experience of 17 family caregivers by Boland and Sims (19%). Five family caregivers were caring for infants and 12 were caring for a spouse or parent. The central theme that emerged was caregiving as a solitary journey. This theme incorporated several related concepts, including burden and responsibility.
Boland and Sims' (1996) description of burden included caregiving as a "duty without any break" and caregiving being "up to me more than anyone else [in the family]." Some caregivers stated they had "no time for regular living" because they saw themselves as a "24-hour care person (p. 57)."
Boland and Sims (1996) also reported the caregiver's positive feelings toward caregiving. The caregiver's
...commitment to care, expressed as personal responsibility, appeared to moderate burden (p. 56).
Researchers have documented that caregivers have more illness and stress than noncaregivers. These factors can influence decisions related to institutionalization. For instance, Lieberman and Kramer (1991) studied 321 dementia patients and their caregivers during the course of 1 year. In that year, 22% were institutionalized. Whereas the patient characteristics, such as level of cognitive or medical impairment, did not predict institutionalization, caregiver characteristics did. Type of caregiver arrangement, number of family problems, and amount of distress reported by the caregiver predicted institutionalization.
It is important for geriatric nurses to understand how to decrease the burden of family caregiving. Monahan and Hooker (1995) give us some insight. They examined the impact of social support and personality on the health of 51 family caregivers of dementia patients.
Almost one-third (29.4%) of the caregivers reported having hypertension and 21.6% had "heart trouble." In comparison, Desai, Zhang, & Hennessy (1999) report an incidence rate of 40.3% for hypertension and 28.6% for heart disease among those 65 or older. Although the disease rates were lower in the Monahan and Hooker study, it must be noted that these caregivers have the added stress of caregiving responsibility and the potential of exacerbation of illness. The regression equation explained 28% of the variance in the health measure [F (3,46) = 7.60, ? < .005]. Higher levels of perceived social support were associated with better health (b = ??,? < .05) and higher levels of neuroticism were associated with worse health (b = -.15, p <. 005).
Conducting family caregiver assessments should serve to identify unmet health and referral needs. Assessments may be a first step toward helping caregivers obtain the information and services necessary to maintain their own health in the face of the caregiving task before them. Conducting a family assessment may also help the nurse become part of the caregiver's social support network, especially if the assessment leads the nurse to intervene in any way with the caregiver.
A pilot study conducted by Archbold et al. (1995) gives credence to this approach. In that study, PREP nursing interventions, designed to increase preparedness (PR), enrichment (E), and predictability (P) in families caring for older individuals, were employed with 1 1 families. The control group received standard home health care. The PREP intervention group scored higher on the Care Effectiveness Scale and rated the assistance received from the nurses higher than did the control group (Archbold et al., 1995).
Although not statistically significant, the PREP group mean hospital cost ($2,775) was lower for the 3-month study period than was the control group's mean hospital cost ($6,929). Although the study examined in this article does not test interventions, some similarities exist between it and several of the essential elements of the PREP system. These include the importance of basing interventions on systematic assessment of the caregiving situation and using a family focus to plan interventions rather than focusing on only the individual home health client.
This descriptive study used a convenience sample drawn by the home health nurses from their caseloads. The human participant committees at the university and the participating home care agencies approved the study.
Data Collection Methods
A two-page caregiver assessment tool was developed for this study (Figure). Questions for this tool were taken from the instructor-developed assessment tools used by the students in the pilot study. The tool included demographic data on the caregiver and a section of questions to elicit selfdescribed health problems, medications, use of health services, and health history. The tool concluded with a section for the nurse to record physical assessment findings, such as vital signs and lung sounds, and to assess home care needs. The most helpful questions in identifying unmet health and referral needs in the pilot study were selected for the tool. Other questions were developed from Medicare eligibility requirements for home health care (Health Care Finance Administration [HCFA], 1989). Three expert home health care nurses reviewed and edited the tool during its development to establish content validity.
Figure. Family Caregiver Assessment.
Home health nurses from three certified home health care agencies in a mid-sized southwestern city were recruited to collect data. Two agencies were not-for-profit and the third was proprietary. The nurses were oriented to the purpose of the study, use of the assessment tool and informed consent forms, and the eligibility criteria for family caregivers. The home health nurses were reimbursed $10 for each caregiver assessment completed.
To be eligible for inclusion in die study, the family caregiver had to be:
* At least 65 years old.
* The primary family caregiver in the home.
* An unpaid caregiver.
* Residing in me same home with the home health client.
The home health nurse collected the data during regularly scheduled home visits. The nurse informed the caregivers about the purpose of the study and asked them to sign an informed consent form. They were assured their decision whether or not to participate would not influence the home health services their family member was receiving or would receive in the future.
Data collected were based on caregiver self-report obtained by the nurse during interviews. Nurses assessed blood pressure, pulse, lung sounds, and edema. Nurse made several professional judgments on the need for health teaching, referrals, and home healm care and determined whether caregivers met HCFA's criteria for being homebound, skilled, or both (HCFA, 1989).
Data were collected on 51 family caregivers and summarized, along with the data from the pilot study, in Table 1. The average age of the family caregiver was 75 years. Most were women, White, and spouses of the home health client. The participants had been caregivers for an average of 34.4 months (range, 1 month to 20 years) and reported spending an average of 13.3 hours per day as caregivers (SD - 9.15). The care recipients had a wide range of medical conditions, the most frequent of which are Usted in Table 2.
Approximately half (25) of the caregivers reported poor or fair health, and the other half (26) reported good or excellent health. In addition, 17 (33.3%) reported their health had declined during the past 6 months. They had an average of two health problems (SD = 1.48) with a range of 0 to 10. Caregivers used an average of 2 to 3 prescriptions (M = 2.92, SD = 2.57) with a range of 0 to 12. They actively used medical care, with 29 (56.9%) seeing a physician within die previous 2 months. Only four (7.8%) reported more than 2 years had elapsed since they had seen a physician.
COMPARISON OF MEANS FOR SELECTED VARIABLES FROM THE PILOT AND CURRENT STUDY
Despite having had recent medical attention, these family caregivers had a high level of unmet health needs. Two (5.9%) of the female caregivers had never had a PAP smear. Of the others, an average of 73 months, or 6 years (SD = 116.86 months), had elapsed since their last PAP smear. In comparison, Janes et al. (1999) reported that, nationally, 77.4% of women 65 to 74 years with an intact uterus had had a PAP smear within the previous 3 years. Among those 75 or older, 58.2% had a PAP smear. Eight (23.5%) of the women reported never having received a mammogram. For those who had a mammogram, an average of 19.5 months (SD = 28.28) had elapsed since their last one. In comparison, Jones et al. reported that 75.4% of women between age 65 and 74 have had a mammogram within the past 2 years. Among women 75 or older, 61.4% have had a mammogram within the past 2 years.
Data on prostate examinations was available for only 11 of the male caregivers. Of those 11, one had never had a prostate check, but the rest had one within 24 months.
An average of 25.2 months (SD = 75.14) had elapsed since these caregivers had their last routine physical examination. Dental care was underused, with the caregivers averaging 59 months or almost 5 years (SD = 98.66) since their last dental examination.
In terms of health behaviors, 11 (21.6%) of the sample smoked, 21 (41.2%) did not monitor their fat intake, 22 (43.1%) did not monitor their salt intake, and 22 (43.1%) did not monitor their sugar intake. On average, caregivers consumed 2.4 (SD = 2) cups of beverages containing caffeine per day.
The nurse asked caregivers to rate their stress level between 1 and 5 with 1 being "everything feels calm" and 5 being "my world is coming apart." A large number (n = 19, 37.3%) rated their stress level as 3, and the same number (n = 19, 37.3%) rated their stress level as 4 or 5. Of the 51, 11 (21.6%) reported they never did anything for themselves.
The physical assessment findings revealed 10 (19.6%) caregivers had blood pressures higher than 160/90 mmHg; 6 (11.8%) had crackles, an indication of fluid in the lungs; and 11 (21.6%) had pedal edema.
The nurses found 40 (78.4%) caregivers in need of a referral, most frequently to a physician. The nurses also recognized that at least 40 (78.4%) were in need of health teaching, with the most common need being for medication teaching. Specific categories of needs and their frequencies can be found in Table 3.
In addition, 12 of the 51 (23.5%) of the caregivers were potentially eligible to receive home health care services because they met both HCFA's skilled and homebound requirements. These caregivers met the skilled requirement because they had need of a home health care nurse's services to monitor a changing condition, provide teaching, or provide direct care. They also qualified as homebound because leaving their home required assistance and was difficult for them to accomplish because of their health conditions. Another eight had skilled needs, but did not meet Medicare's homebound requirement. Although the caregivers would not be categorized as homebound based on their own health status, they were often confined to their homes because of their caregiving role.
THE 10 MOST FREQUENT MEDICAL DIAGNOSES OF THE CARE RECIPIENTS
Caregivers potentially eligible for Medicare-reimbursable home health care services differed from those who were not in several ways. For instance, caregivers qualifying for both skilled and homebound services had significantly more health conditions (M = 2.92, SD = 1.68) than those who did not (M = 1.51, SD = 1.25, £ = 3.13, p =.003). They were also more likely to be on more medications (M =5.5, SD = 2.75) than those not eligible (M = 2.1, SD = 1.94, f = 3.96, p = .001). None of the potentially eligible caregivers reported being in either good or excellent health, and none reported their health had improved over the past 6 months. Interestingly, those potentially eligible to receive home health care services had been in the role of caregiving for a shorter period of time (M = 13.8 months, SD =12.83) than those not eligible (M = 41.1 months, SD = 56.12), i(47) = -2.74, p = .009.
Many needs emerged among this sample of older caregivers. In this sample, typical caregivers were in their 70s, suffered from several medical conditions, and used medical care regularly but failed to receive regular health screening. The typical caregiver often reported a high stress level and exhibited needs for teaching and referral to health care providers, community agencies, or home health care services for themselves. Despite these factors, the typical caregiver in this study devoted 13 hours per day to being a caregiver.
This study reflects the unmet health needs in a sample of older caregivers. Pilot work (Bradley & Alpers, 1996) suggested similar needs in a similar sample. Table 1 shows the similarities between the findings of the two studies. In the pilot study in which students gathered data, significantly more referral and skilled needs were identified. There may be several reasons for this. First, the students spent more time assessing the family caregiver - thus the assessment findings may have been more comprehensive. Also, in the pilot study, the researchers reviewing the student's assessment data determined the actual need for referrals, teaching, and eligibility for home health care. The researchers may have had a bias toward identifying more unmet needs. The home health nurses may also have been so focused on identifying Medicare-reimbursable needs that they failed to identify preventive teaching and referral needs. Overall, the caregivers in both samples had many demographic and caregiving similarities. They also had a high level of unmet health and referral needs. Interestingly, approximately one-quarter of the family caregivers assessed were in need of and potentially eligible to receive Medicare-reimbursable home health services.
With the level of reported stress, high number of caregiving hours required, and caregiver's own health needs, the question must be asked whether all of these caregivers could adequately provide care to their family members. Nurses have an obligation to assess the caregiving ability of family caregivers and provide support to them. Lieberman and Kramer's study showed that caregiver distress predicted institutionalization for the family member (1991). The Archbold et al. (1995) study showed caregivers provided with supportive nursing interventions were more effective caregivers.
Given the findings of this study, it would seem self-evident that a home health agency would routinely conduct family caregiver assessments. Indeed, there are advantages to their doing so. Apart from identifying prospective home health clients, the caregiver assessments can help the nurse determine if a caregiver has unmet health needs. Chen (1999) studied 84 family caregivers and found that health promotion counseling given to family caregivers was effective in helping them adopt healthier lifestyles.
In the past, few reimbursement opportunities for health promotion existed, but currently, health maintenance organizations (HMOs) may be interested in contracting with home health agencies to conduct caregiver assessments. The HMOs are judged by their success, in part, at achieving high utilization rates for health screening procedures, such as PAP smears and mammograms. Family caregiver assessments can be the first step in identifying members who need screening procedures and in encouraging them to obtain these services from their HMO.
The physician community may also favor these caregiver assessments. They may welcome the referrals resulting from the assessment. In a managed care arena in which the physician shares financial risk with the HMO, the physician would be invested in providing preventive care and early treatment.
Barriers to conducting family caregiver assessments also exist. The most obvious of which is that many of these caregiver assessments will not be directly reimbursable. However, the home health care arena is quickly changing to one of managed care and prospective payment. Consequently, agencies must learn to maximize the output of each visit. Conducting routine family caregiver assessments could help make this possible. Further study may substantiate Archbold's hypothesis that such interventions can save money by decreasing the costs for rehospitalization (1995) or institutionalization.
Other barriers to conducting family caregiver assessments include those erected by the home health nurse. Home care nurses usually have extensive hospital experience (Stulginsky, 1993). This experience does little to help them recognize the need for expanding their focus beyond the individual client who is ill. In addition, they are often reimbursed per visit, making it too tempting to make quick visits including only those interventions known to be reimbursable. Nurses have to be helped to understand that a family caregiver assessment may have long term benefits. These may include the generation of secondary referrals, or the design of a plan of treatment within the caregiver's ability.
In this study, the nurses spent an average of 25 minutes (SD =7.69) completing each family caregiver assessment. Adapting the tool so caregivers could partially fill it out themselves between the visits would further decrease the nurse's time.
Limitations of the Study
A limitation of the study is it used a convenience sample. Also, the sample was homogenous and did not represent minority caregivers well. Its findings cannot be generalized to all family caregivers of home health clients.
Implications for Further Research
Further longitudinal research should be conducted to determine if family caregiver assessments affect caregiver health and health practices. Such research could examine the effect on caregivers' perceptions of social support. A prospective study could also measure whether institutionalization is decreased when family caregivers are assessed and incorporated into the nurse's plan of care.
Further studies should also be conducted to refine the caregiver assessment tool. Some of the questions on the tool proved more useful than others in predicting potential Medicareeligibility for home health care services. For instance, caregivers that were both skilled and homebound had significandy more health conditions, took more medications, and rated their health more poorly. The questions on the tool related to these variables were, therefore, the most important questions relating to home health eligibility in this sample. Further research could be done to determine the effect of decreasing the number of questions needed to identify unmet health needs and me need for referrals, health teaching, or home health services.
NEEDS IDENTIFIED IN CAREGIVER SAMPLE (n = 51)
Implications for Gerontological Nursing Practice
Home health nurses' dependence on family caregivers will increase as the population ages. It will become imperative for all geriatric nurses to conduct family caregiver assessments. How else can health care providers send patients home from the hospital, the nursing home, or even an office visit with the assurance that the caregiver can manage their care?
For family caregiver assessments to become routine, home health nurses must consider the families to be their clients - not just the individuals who are ill. Nurses need to incorporate caregivers into the plan of care. The assessment will identify health needs that nurses can help meet through health teaching and referral. Nurses must be able to identify when the caregiving activity or burden is endangering the caregiver's health.
In addition, the nurse should periodically reassess the family caregiver. Gaynor (1990) reported the decline in caregiver healdi may intensify 24 to 32 months after caregiving begins. Performing the baseline assessment, followed by periodic reassessment, may identify caregiver needs before a decline in caregiver heakh occurs.
Gerontological case managers and other nurses need the skills to conduct caregiver assessments. Family caregivers are in need of nursing care. Nurses' ability to care for older clients at home depends on these caregivers. Nurses must make the family caregiver's health a priority. Family caregiver assessments must be a routine part of the care home health nurses provide.
- Archbold, P.G., Stewart, B., Miller, L.L., Harvath, T.A., Greenlick, M.R., Van Buren, L., Kirschling, J.M., Valanis, R.G., Brody, K.K., Schook, J.E., & Hagan, J.M. (1995). The PREP system of nursing interventions: A pilot test with families caring for older members. Research in Nursing & Health, 18(1), 3-16.
- Arno, P.S., Levine, C, & Memmott, M.M. (1999). The economic value of informal caregiving. Health Affairs, 18(2), 182-188.
- Boland, D.L., & Sims, S.L. (19%). Family care giving at home as a solitary journey. Image, 28(1), 55-58.
- Bradley, PJ, & Alpers, R. (1996). Home healthcare nurses should regain their family focus. Home Healthcare Nurse, 14, 281-288.
- Bull, MJ., Maruyama, G., & Luo, D. (1995). Testing a model for posthospital transition of family caregivers for elderly persons. Nursing Research, 44(3), 132-138.
- Chen, M.Y. (1999). The effectiveness of health promotion counseling to family caregivers. Public Heakh Nursing. 16(2), 125-132.
- Desai, N.M., Zhang, P., & Hennessy, CH. (1999). Surveillance for morbidity and mortality among older adults - United States, 1995-1996. Morbidity Mortality Weekly Report, 48, 7-25.
- Faison, KJ., Faria, S.H., & Frank, D. (1999). Caregivers of chronically ill elderly: Perceived burden Journal of Community Health Nursing, 16(A), 243-253.
- Gaynor, S.E. (1990). The long haul: The effects of home care on caregivers. Image, 22(4), 208-212.
- Health Care Finance Administration. (1989). Medicare home health agency manual (HCFA Pub. 11, Sections 204.1 & 205.1). Washington, DC: U.S. Government Printing Office.
- Health Care Financing Administration. (1997). Balanced Budget Act of 1997. Retrieved, January 10, 2003, from http://cms.hhs.gov/ healthplans/bba/
- Janes, G.R., Blackman, D.K., Bolen, J.C, Kamimoto, L.A., Rhodes, L. Caplan, L.S., Nadel, M.R., Tomar, S.L., Lando, J. F., Greby, S. M., Singleton, J. A. , Strikas, R. A., & Wooten, K.G. (1999). Surveillance for use of preventive heakh-care services by older adults, 1995-1997. Morbidity Mortality Weekly Report, 48(S), 51-88.
- Lieberman, M.A., & Kramer, J.H. (1991). Factors affecting decisions to institutionalize demented elderly. The Gerontologist, 31, 371-374.
- Monahan, D.J., & Hooker, K. (1995). Health of spouse caregivers of dementia patients: The role of personality and social support. Social Work, 40(3), 305-314.
- Mui, A.C. (1995). Perceived health and functional status among spouse caregivers of frail older persons. Journal of Aging Health, 7(2), 283-300.
- Schulz, R., & Beach, S.R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. JAMA 2*2(23), 2215-2219.
- Sisk, RJ. (2000). Caregiver burden and health promotion. International Journal of Nursing Studies, 17(1), 37-43.
- Stulginsky, M.M. (1993). Nurses' home health experience. Nursing Health .Care, 14(S), 402-407.
COMPARISON OF MEANS FOR SELECTED VARIABLES FROM THE PILOT AND CURRENT STUDY
THE 10 MOST FREQUENT MEDICAL DIAGNOSES OF THE CARE RECIPIENTS
NEEDS IDENTIFIED IN CAREGIVER SAMPLE (n = 51)