Journal of Gerontological Nursing

CARING FOR THE CAREGIVERS

Sandra Marchi-Jones, RN, MS, CS, FNP; Juanita F Murphy, PHD, RN, FAAN; Paul Rosseau, MD

Abstract

ABSTRACT

The relationship between disabled elderly veteran care receivers' functional status and their in-home family caregivers' strain was examined in this study. The convenience sample was composed of 93 dyads. Data were obtained from care receivers' health care records and included the Folstein Mini-Mental State Examination (MMS), Activities of Daily Living (ADL), Instrumental Activities of Daily Living (ADL), and Robinson's Caregiver Strain Index (CSI). Major findings were: 52% of caregivers experienced significant strain; 59% of care receivers were cognitively impaired to some extent and were severely impaired in IADL and ADL; and the relationships between care receivers' functional status (cognitive, ADL and IADL) and caregiver strain were statistically significant.

Abstract

ABSTRACT

The relationship between disabled elderly veteran care receivers' functional status and their in-home family caregivers' strain was examined in this study. The convenience sample was composed of 93 dyads. Data were obtained from care receivers' health care records and included the Folstein Mini-Mental State Examination (MMS), Activities of Daily Living (ADL), Instrumental Activities of Daily Living (ADL), and Robinson's Caregiver Strain Index (CSI). Major findings were: 52% of caregivers experienced significant strain; 59% of care receivers were cognitively impaired to some extent and were severely impaired in IADL and ADL; and the relationships between care receivers' functional status (cognitive, ADL and IADL) and caregiver strain were statistically significant.

T he elderly population of the United States is expanding rapidly and is experiencing a variety of chronic conditions. As the locus of care shifts from acute settings to the home (Grobe, Ahmann, & Ilstrup, 1982; Mor, Allen, Houts, & Siegel, 1992) where the daily management of care is provided primarily by the family (Baldwin, 1990; Brody, 1986; Strauss & Corbin, 1988), nurses are assuming greater responsibility for comprehensive family care. Valid and meaningful assessment of the health and welfare of family members beyond the narrow focus of medical diagnosis is of utmost importance since caregivers often experience strain as a result of providing daily care to a disabled, elderly care receiver over an extended period of time (Montgomery, Gonyea, & Hooyman, 1985; Pearlin, Mullan, Semple, & Skaff, 1990; Robinson, 1983; Zarit, Reever, & Bach-Peterson, 1980). Both care receivers and caregivers are then at high risk for needing external support and intervention, and possible institutionalization.

There is lack of consensus among researchers regarding the links among antecedents of caregiver stress, caregiving activities performed, and the positive and negative effect of providing care to elderly, disabled family members in the home (George, 1994; Stull, Kosloski, & Kercher, 1994). Pearlin, Mullan, Semple, and Skaff (1990) presented a model of the caregiving stress process and identified the following domains: 1) the background and context of stress (e.g., background of dyad, sociodemographic factors); 2) the stressors (e.g., care receivers' self-care deficits, cognitive impairments; 3) the mediators of stress (e.g., coping strategies, social support of caregivers); and 4) the outcomes of stress (caregiver strain, mental and physical health). The relationships among three of these domains - context, stressors, and outcomes - were explored in this study. Measures of mediators were not included in this preliminary evaluation of a clinical demonstration program.

The major aim of this study was to examine the relationship of care receiver functional status to caregiver strain. The primary purpose was to determine if caregiver strain increases as the care receiver's functional abilities decrease. A secondary purpose was to ascertain the differential relationship between: a) decreased cognitive abilities and caregiver strain and b) decreased self-care abilities and caregiver strain.

METHODS

Setting

A large Veterans Affairs Medical Center, located in the Southwestern region of the country, served as the site for the study. This medical center provided primary, secondary, and tertiary health care services to approximately 245,000 eligible veterans, most (60%) of whom were over the age of 60. In addition to providing inpatient, outpatient, and extended care services, the medical center established a hospital-based home care program in the late 1980s. An interdisciplinary health care team, which included a nurse case manager, provided in-home care to veterans, who had been assessed as being at high risk for institutionalization, and to their family caregivers. The focus of this study was primarily on family caregivers of veterans who had been admitted to the home care program.

A veterans' health care setting was selected for this study since the cost of VA-sponsored health care is expected to rise even more dramatically than for the general population due to the aging of the veteran population over the next 20 years. In the year 2000, it is estimated that two in every three U.S. males over the age of 65 will be a veteran and will be eligible for veterans' health care benefits (Hutchinson & Fozard, 1984). Thus, the role of VA-sponsored health care must be addressed in the contemporary arena of proposed health care reform.

Sample

A convenience sample of 93 caregiver-care receiver dyads was selected from a large pool of potential subjects. All individuals who met the following criteria were included in the study: a) disabled veteran 60+ years of age; b) who had received or was receiving care through the program; and c) who had a designated adult caregiver providing primary care in the home. Care receivers and caregivers had been assessed in the home by the mterdisdplinary health care team, using the instruments that were included in this study. The responses from the assessment process were a part of the care receiver's record. The data source for this study were the records of all veterans who met previously established criteria and who were admitted to the program during a designated one year period of time. Appropriate measures were taken regarding the necessary approval procedures for conduct of the study.

Instruments

Care receivers' cognitive abilities were measured by means of the twopart Folstein Mini-Mental State (MMS) instrument (Folstein, Folstein, & McHugh, 1975). The first part of the scale measures orientation, memory, attention, and calculation; and the second part assesses recall and language ability. A maximum score of the combined subscales is 30. A score of 27 to 30 is indicative of normal cognitive function.

Care receivers' self-care abilities were measured by means of the nine-item Instrumental Activities of Daily Living (IADL) scale (Lawton & Brody, 1969), and a six-item Activities of Daily Living (ADD scale (Katz, Ford, Maskowitz, Jackson, & Jaffe, 1963). Caregivers' level of strain was measured on an interval scale utilizing the 13-item Robinson Caregiver Strain Index (CSI). Sociodemographic data were obtained from both caregivers and care receivers and were included in the health care record.

Reliability examination of the study instruments indicated the following coefficients: ADL, r=.93; IADL, r^.89; CSI, r=.80; and MMS r=.87.

RESULTS

Sample Description: Sociodemographic Factors

The care receivers in the sample were male. A majority of the primary caregivers were their elderly female spouses. Ethnic composition of caregivers was 79 (84.9%) Caucasian; 8 (8.6%) SpanishAmerican; 5 (5.4%) African American; and one Oriental. Ethnicity of care receivers was almost identical to those of their caregivers with the exception that there were six African Americans and no Orientals.

Educational level reported by caregivers tended to be somewhat lower than that reported by care receivers. Of the 59 caregivers whose level of education was documented, 16 (27%) had less than a high school education; 31 (53%) had completed high school; and 12 (20%) had some college education or had completed college. Care receivers' education ranged from one individual who had no formal education to two individuals who had earned doctoral degrees. Of the 91 care receivers whose educational level was documented, 27 (30%) had less than a high school education; 12 (13%) had completed high school; 38 (42%) had some college or had completed college; and 14 (15%) reported either some graduate education or completion of a graduate degree, including a doctoral degree.

The age of caregivers ranged from 29 to 92 years, with a mean of 64.5 and a standard deviation of 12.98 years. The age range of care receivers was from 60 to 99 years, with a mean of 74.2 and a standard deviation of 9.37 years. The mean age of care receivers was almost 10 years greater than the mean age of caregivers but there was greater variance in age reported by caregivers.

Length of caregiving ranged from one month to 192 months (16 years). The mean was 46.2 months, with a standard deviation of 46.6, a mode of 60 months, and a median of 30 months. Income oí the caregivercare receiver dyads ranged from $335 to $4,721 per month. The mean income for the sample was $1,503 per month.

Scores from Instruments

Summated scores from the ADL and IADL instruments were used to determine care receivers' self-care ability. ADL scores of the 93 care receivers ranged from 6 (independent) to 18 (totally dependent) with a mean score of 11 for the group, which is indicative of considerable need for assistance with most selfcare activities. An item analysis of the scales' six items revealed that 82 (88%) of the care receivers were assessed as needing assistance with batbing; 71 (76%) needed assistance with dressing; 54 (59%) had difficulty with toileting; 49 (53%) with continence; the same number (n=49, 53%) with self-feeding; and, 48 (52%) with transfers.

The IADL scores of the 89 care receivers for whom data were available ranged from 10 (mostly independent) to 27 (highly dependent). The mean IADL score for the group was 15 which is indicative of a fairly high level of dependence or, conversely, the need for assistance with independent living skills. The number of care receivers experiencing difficulties with IADL were as follows: 88 of 89, with laundry and housework; 87 (98%), with home repairs; 81 (91%), with shopping; 79 (89%), with transportation; 78 (88%), with meal preparation; 76 (85%), with handling money; and, 48 (54%) had difficulty using a telephone.

The MMS scores of the 93 care receivers ranged from 0 (severely impaired) to 30 (normal) with a mean score of 22. Fifty-nine percent (tt=55) of the care receivers were cognitively impaired to some degree, as indicated by a score between 0 and 26 on the MMS. Care receivers had the greatest difficulty in the area of language and 65 (71%) of the care receivers scored below the maximum language score of 9. Fifty-one (56%) of the care receivers had difficulty in the area of orientation; 50 (55%) had difficulty in the area of attention and calculation; and 48 (50%) had difficulty with recall.

The summated scores from the CSI, for this group of subjects, ranged from 0 (no strain) to 12 (high strain). Forty-eight (52%) of the caregivers scored 7 or above which is indicative of a high level of strain. Item analysis of the caregivers' scores indicated that: 65 (75%) found changes in care receivers' status upsetting; 60 (66%) reported feeling confined; 50 (55%) reported physical strain; 48 (53%) reported care receivers' behavior as upsetting; and 47 (52%) reported feeling emotionally strained.

A factor analysis of the CSI scores was conducted to address the criticism by George and Gwyther (1986) and by Novak and Guest (1989) that the CSI instrument is multidimensional and that a total strain score is reductionistic. Eigen values for four factors ranged from 3.95 for Factor 1 to 1 .06 for Factor 4. A varimax orthogonal rotation was conducted to examine for item clustering and items were determined to be associated with a factor if the loading value was greater or equal to 0.55. Items #1, #2, #3, #4, #8, #9, #10, and #13 were clustered for Factor 1 and were labeled "physical and emotional strains of caregiving." Items #5, #6, and #7 were clustered on Factor 2 which could be conceptualized as representing the "social strains of caregiving." Item #12 was associated with Factor 3 and represented "financial strains of caregiving." Item #11 was associated with Factor 4 and represented the "occupational strains of caregiving." Since only Factor 1 had the requisite number of four or more items needed to comprise a subscale, further statistical analysis was not warranted for the four identified factors. Researchers should continue to assess the multidimensionality of this scale to gain more precise insight regarding the factors associated with caregiver strain.

Table

TABLE 1Correlation Mofrfxx Socfocfem ograpfifc DuHi of Caregiver and Coro Receiver, ADi, MDi, MMS, and CSI

TABLE 1

Correlation Mofrfxx Socfocfem ograpfifc DuHi of Caregiver and Coro Receiver, ADi, MDi, MMS, and CSI

Relationships Among Study Variables

The relationships among sociodemographic factors and a) care receivers' self-care deficits (ADL and IADL scores); b) care receivers' cognitive impairments (MMS scores); and c) caregiver strain (CSI scores) were examined by means of Pearson's correlational analyses. A correlational matrix was constructed and is included as Table 1.

A statistically significant positive relationship (r=0.36, p^0.0004) was detected between age of caregivers and care receivers and between care receivers' level of education and the dyads' income (r=0.45, p≤O.0001). Older caregivers were taking care of older care receivers and younger caregivers were taking care of their younger care receivers. Also, the more highly educated dyads reported a higher monthly income.

A statistically significant negative correlation was found between caregivers' level of education and care receivers' ADL scores (r=-0.27, p*s0.01) and IADL scores (r=-0.32, p≤0.003). This finding indicates that care receivers' abilities to provide their own self-care activities and who have a higher degree of independence are also more educated, among this sample of caregivers. A positive statistically significant relationship was found between length of caregiving and ADL scores (r=0.33, p≤0.002) and IADL (r=-0.32, p≤0.003) scores, indicating that as time length of caregiving increased, care receivers' self-care and independent living deficits and need for assistance also increased.

A statistically significant negative correlation (r=-0.39), pO.0001) was found between MMS scores and CSI scores. This finding indicates that as care receivers' cognitive impairment scores increased, caregivers' strain scores also increased.

A statistically significant positive association (r=0.36, ? «?0.0005) was detected between ADL scores and CSI scores and between IADL scores (r=0.43, p≤O.0001) and CSI scores. As ADL and IADL scores increased (higher dependency), caregiver strain scores also increased. In short, as need for assistance in basic and independent self-care skills increased, caregiver strain also increased.

There was a significant negative correlation (r= -0.064, p≤O.0001) between ADL scores and MMS scores. Care receivers who were more cognitively impaired (low MMS scores) were also more dependent (higher ADL scores) than their cognitively intact cohorts.

As expected, results from analysis indicated a statistically significant positive correlation (r=0.79, p≤O.0001) between the two measures of self-care activities (ADL and IADL scores). In summary, as instrumental living skills declined, basic self-care abilities declined also.

The relative degree of association of the three stressor variables (care receivers' basic self-care deficits, independent self-care deficits, and cognitive impairments) with the outcome variable of caregiver strain was examined by means of Pearson's correlational analysis. A summary of the results of the analyses is included in Table 2. The highest correlation coefficient was that of IADL scores with CSI scores (r=0.43, p≤0.0001). It was concluded that instrumental activities of daily living (IADL scores) were more strongly associated with and possibly more predictive of caregiver strain (CSI scores) than were the other two measures of functional impairment. Statistical analysis by means of multiple regression revealed a significant multiple R of .22 (F=7.957, p≤O.OOl), indicating that IADL, ADL, and MMS scores accounted for 19% of the variance in caregiver strain.

In summary, a majority of the caregivers sampled were experiencing a fairly high degree of strain, as measured by the Robinson Caregiver Strain Index (CSI). Fiftyseven percent of care receivers sampled were impaired in basic self-care as measured by the ADL instrument and 82% were moderately to severely impaired in independent living skills (IADL). There were statistically significant relationships between IADL, ADL, MMS scores and caregiver strain (CSI scores). IADL scores had the strongest association with caregiver strain (CSI scores).

DISCUSSION

The findings of this study provide further support to the developing body of research literature that links care receivers' functional status to caregivers' strain. Conclusions of the study were that a majority of the caregivers were experiencing strain; all of the care receivers were either cognitively impaired and /or had self-care impairments; there was a statistically significant negative relationship between care receivers' cognitive function and caregivers' strain, suggesting that as care receivers' cognitive function declined, their caregivers' level of strain increased; there were statistically significant positive relationships between care receivers' selfcare and independent living skills and caregivers' strain, indicating that as dependency and need for assistance increased, caregiver strain also increased; and among the three variables (care receivers' cognitive function, independent living skills, and basic self-care abilities) independent living skills had the strongest relationship to caregiver strain. Each of these relationships is corroborated in the research literature regarding caregiver strain (Archbold, 1980; Cantor, 1983; Haley, Levine, Brown, Berry, & Hughes, 1987; Hoyert & Seltzer, 1992; Schulz, Visintainer, & Williamson, 1990; Wright, Clipp, & George, 1993).

Table

TABLE 2Pearson Correlai Ion Coefficient*? MMS, IADLY, and ADL, to CSI

TABLE 2

Pearson Correlai Ion Coefficient*? MMS, IADLY, and ADL, to CSI

The findings of this study have numerous implications for the advanced practice of clinical nursing. First, as advanced practice nurses move into the community and into the case management role, they are expected to be skilled and proficient in the assessment of clients and their family members in a number of settings, and in using multidimensional assessment approaches. Instruments used in more holistic, multidimensional approaches should not be limited to an assessment of a disease or disability process but should include measures of psychosocial, functional, cultural and economic dimensions as well. Moreover, these instruments need to be examined systematically and evaluated continuously for evidence of reliability and validity, for determination of the instrument's sensitivity in detecting small differences in the phenomenon being measured, and for ascertaining the appropriateness of the instrument for the population under investigation.

Second, nurses in advanced practice must develop a holistic family perspective in which the interacting family becomes the central focus. The success of care in the home depends on the interactive involvement of both caregivers and care receivers. Nurses should be able to assist in the management of the numerous intrusions that are an inevitable part of the daily management of the disability. Strauss and Corbin (1988) maintain that the uncertainty associated with chronic disabling illnesses places additional strain on the ill and their family caregivers as they are forced to reorganize and restrict their lives in a continuing attempt to prepare for the unpredictable course of the illness. Caregivers in this study indicated that changes in care receivers' status was one of the most stressful and upsetting factors with which they had to deal.

The finding that IADL scores has the strongest relationship to caregiver strain scores is particularly important for unraveling problematic situations that require the intervention of a caregiver. The IADL scale measures self-care abilities that require intact cognition. Declining IADL scores may indicate subtle changes in the care receivers' cognitive realm which may add to caregiver strain. Overwhelming strain may then lead to the need for further services or to institutionalization of either the care receiver or the caregiver or both.

Third, practicing nurses must not only be skilled in the use of salient and sensitive, population-oriented assessment tools and in dealing with the emotional needs of the family as a unit, but also they must be able to intervene on behalf of the family. Interventions range from a change in the medical regime, to teaching clients and family members, to referring to appropriate community services, to functioning as an advocate regarding additionally community resources, to being available on a continuous basis and over an extended period of time. These interventions necessitate an awareness of the spectrum of services that are available in the community as well as a working knowledge of the availability and accessibility of those services vis-à-vis the needs of individual clients. Interventions such as adult day care, respite care, and caregiver effectiveness training programs have been developed for positively impacting caregiver strain. Evaluative research is needed to ascertain which services are most effective in dealing with caregiver strain and which services will be utilized by caregivers.

Further research is needed in several areas: 1) background of the care receiver-caregiver dyad's relationship as an antecedent to caregiver stress level; 2) inclusion of the mediators of stress including caregivers' coping strategies and social support as delineated by Pearlin, Mullan, Semple, and Skaff (1990); 3) further clarification regarding the multidimensionality of the CSI and factor loadings of the 13 items; 4) exploration of changes in IADL division of labor prior to disability and after disability, particularly gender-based changes such as meal preparation by males and handling money by females; 5) relationship of in-home, community, and institutional services utilization, as long range outcomes, to care receivers' functional ability and caregivers' strain; and 6) longitudinal exploration of birth cohorts of caregiver-care receiver dyads in relation to the societal context of changes in family structure and functions and in consort with the increasing employment of women outside of the home. This research agenda is congruent with the guiding principles that are part of contemporary health care reform and transmits a clear message to advanced nurse practitioners that their knowledge base for practice is constantly evolving.

The enumerated implications and proposed areas for future research have inordinate ramifications for the education of contemporary and future professional nurses. As the locus of care continues to shift from acute settings into the community, as the care process moves from the physiologically sick individual to the family unit, and as the number of valid, reliable, and sensitive assessment tools are developed, the knowledge base of professional nursing must be reshaped. The linkages among education, research and practice must be reformulated.

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TABLE 1

Correlation Mofrfxx Socfocfem ograpfifc DuHi of Caregiver and Coro Receiver, ADi, MDi, MMS, and CSI

TABLE 2

Pearson Correlai Ion Coefficient*? MMS, IADLY, and ADL, to CSI

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