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It. O III; .II.~QO.. OI" .- O l P I .r . I . o : . .u... c... I...... o...onoo.P..I.J10o9.0.IéIIPI-c‘6'oo'v5APnp{.d‘QVI' I o '. Q . . I I II I I.’ O ‘ III.||I.| II I‘ I '1' I I l I II 'I .I II”. mung;“@;i;1§1[ji;“;1n m m 570, LIBRARY;— Michigon Shh University This is to certify that the thesis entitled CAREGIVER PERCEPTION OF BURDEN AS RELATED TO SELECTED CAREGIVER CHARACTERISTICS presented by Linda S. Campbell has been accepted towards fulfillment of the requirements for Master of Science degreein Nursing / Major professor Date May 8: 1980 0-7639 MS U is an Affirmative Action/Equal Opportunity Institution PLACE IN RETURN BOX to remove this checkout from your record. TO AVOID FINES rotun on or baton date duo. DATEMBQE. DATE DUE DATE DUE MSU is An Afiirmative AotiorvKual Opportunity Institution ————~— CAREGIVER PERCEPTION OF BURDEN AS RELATED TO SELECTED CAREGIVER CHARACTERISTICS By Linda S. Campbell A THESIS Submitted to Michigan State University in partial fulfillment of the requirements for the degree of MASTER OF SCIENCE IN NURSING College of Nursing 1989 597362‘0 ABSTRACT CAREGIVER PERCEPTION OF BURDEN AS RELATED TO SELECTED CAREGIVER CHARACTERISTICS By Linda S. Campbell A descriptive cross sectional study of 307 caregivers of impaired elderly individuals was conducted to determine the perceived impact on caregivers' lives in the dimensions of schedule, health, finance, and family abandonment. The caregivers' perceptions of impact on their lives were analyzed in relation to such variables as caregiver sex, caregiver income and education, and family relationship of the caregiver to the elderly care recipient. Data were utilized from an earlier research study (Given and Given, 1985). A self-administered Caregiver Inventory for perceptions of feelings was completed by the respondents. The analysis of variance and multiple regression were employed in the statistical analysis. The inferences were that: 1) female spouse caregivers perceive more impact on schedule and health than male spouse caregivers; 2) spouse caregivers perceive more impact on schedule than non—spouse caregivers; 3) non-spouse caregivers perceive more family abandonment than spouse caregivers; and 4) spouse income is related to financial impact and abandonment. To my husband, Bob, and to our children, Bruce and Judy iii ACKNOWLEDGMENTS Very special thanks to Dr. Barbara Given, my committee chairperson, who challenged me beyond my eXpectations. I appreciated the guidance, support, and expertise from my committee members, Dr. Andrea Bostrom, Dr. Sharon King, and Dr. C. W. Given. I am grateful for Dr. Barbara Given and Dr. C. W. Given for permitting me to use the data from their caregiver study. Furthermore, I am most appreciative of Dr. Manfred Stommel's patience and generosity of his time in assisting me with the date analysis. Without Sandie Heritz, my typist, I would not have been able to complete this project. Her time, patience, and her constant desire to strive for excellence in completing the many pages of this thesis certainly made my task easier. Finally, I am most grateful for such a supportive family. The support, love, and encouragement offered by my husband, Bob, made the attainment of my goals possible. His belief in education helped me overcome the discouraging times. To my children, Bruce and Judy, I thank you for your understanding when listening to your mother's trials and tribulations. iv List of List of Chapter I. II. III. TABLE OF CONTENTS TablESOOIOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO FigureSOOOOOOOOODOOO..OOOOOOOOOOOOOOOOOO THE PROBLEM Introduction.......................... Definitions of Concepts............... Functional Status of Variable......... Research Question and Hypotheses...... Purpose of Study...................... Assumptions........................... Limitations........................... Overview.............................. CONCEPTUAL FRAMEWORI OverVieWOOOOOOOO..OOOOOOOOOIOOOOOOOOOO caregiver-0.0.0....0.0.0.000...0.0.0.... Elderly Person........................ Burdens............. ..... ............. Impact on Schedule.................. Impact on Health Status............. Impact on Financial Status.......... Impact from Family Abandonment...... Summary............................... REVIEW OF LITERATURE Over-View.....COCOOOCOOOOO00......00... Description of Caregiver.............. Elderly Person's Functional Status as Related to Perception of Caregiving... Instruments to Measure Perceived Burden.. Relationship of Impact on Schedule and Caregiver Characteristics............. Relationship of Impact on Health Status and Caregiver Characteristics............ Relationship of Impact on Financial Status and Caregiver Characteristics............ Relationship of Impact from Family Abandonment and Caregiver Characteristics. sunlmarYOOOOO...IC.....OOOOOOOOOOOOOOOOOOOOOO V Page ..viii OOOOOX .....1 00.0.9 ....10 ....21 ....22 ....24 ....25 ....25 ....3O ....33 ....34 ....37 ....40 0.0.44 0.0.49 ....50 ....57 0.0.66 0.0.74 0.0.81 0.0.87 ....91 ....95 Chapter IV. Analysis of DATA PQESERTATIOR Overview........ Hypotheses. Descriptive Findings Sociodemographics Sociodemographics NETHODOLOGY AND PROCEDURE Overview.......................... Research Design ............ .... Research Question and Operational Definitions of Variables.... Instrumentation............ Hypotheses........ ...... ........ 96 0.0..00000.00 Reliability and Validity of Caregiver Inventory.. Caregiver Involvement Ouestionnaire...... Sample and Data Collection....... Protection of Human Subjects... Data......... Methodological Assumptions. Summary.. AND ANALYSIS .0000. of the Study Sample of Caregivers..... of the Elderly Person... Description of Functional Level of Elderly IRQCiPient 0f cal-800.000.0000. Description of Perceived Impact...... Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis Functional Level of the Elderly Person..... I.......... 110000.000. III....... IV........ V......... VI........ VII....... VIII...... IX........ X......... XI........ XII....... XIIIOOO0000. Interpretation of Results.. Sociodemographic Characteristics of the Caregiver........................ Sociodemographic Characteristics of the Elderly Recipient................ Data Presentation for Each Dimension.... Perception Of Inlpact....0.0.0000.0......00 Relationship of Caregiver Sex and Perception of Impact from Caregiving...... vi ..113 ..114 ..115 ..116 ..120 ..120 ..124 ..127 ..127 ..127 ..127 ..127 ..129 ..129 ..129 ..129 ..132 ..132 ..133 ..133 ..140 ..141 0.141 ..146 .148 ..149 ..153 Relationship of Family Relationship and Perception of Impact from Caregiving........158 Relationship of Socioeconomic Status and Perception of Impact from Caregiving........166 Summary........................................l73 VI. SUMMARY AND CONCLUSIONS Overview.......................................178 Limitations of the Study.......................l78 Conclusions and Implications of Research.......180 Implications for Nursing Practice..............189 Orem's Self-care Theory.....................189 Implications for Nursing Education.............198 Implications for Nursing Research..............201 Summary........................................204 APPENDIX A — INFORMED CONSENT PROCEDURE..................205 APPENDIX B - CONSENT FORM................................206 APPENDIX C — APPROVAL LETTER FROM UCRIHS........ . . ......207 APPENDIX D — RELEVANT QUESTIONS FOR SOCIODELOGRAPHIC INIORHATION FOR CAREGIVER...................208 APPENDIX E - SOCIODEHOGRAPHIC QUESTIONS FOR RELATIVE.....211 APPENDIX F - QUESTIONS FOR RELATIVE'S ACTIVITIES OF DAILY LIVING.............................212 INSTRUMENTAL ACTIVITIES OF DAILY LIVING AND MOBILITY... ..................... ......212 APPENDIX C - ITEMS UTILIZED FROM CAREGIVER INVENTORY.....214 APPENDIX H ITEHS FOR FAMILY/FRIEI DS SUPPORT............216 REb1EREIJCES..000.0...0..0.....0....0.0...0000000...0.0.0.0217 vii 5.10 LIST OF TABLES Page Sociodemographics Data of Caregivers and Elderly ReCipientS Of care000.0000.0..000...00.0.0000.0117 Frequency and Percentage of Dependencies in ADL'S for the Elderly Care Recipients................122 Frequency and Percentage of Dependencies in IADL's for Elderly Care Recipients....................123 Frequency and Percentage of Dependency in 3 Measurements of Elderly Recipient's hobility...124 Means and Standard Deviations Measuring Caregivers' Perception of Impact on Each DimenSion..0000.0.000.00...00.0.000.0.0000.0000125 One—way ANOVA Comparing Male and Female Caregivers' Perceived Impact From Caregiving...128 Means and Two-way ANOVA for Caregiver Sex and Family Relationship Affecting Impact from caregiVin80.00.00....0..000..000.000000..0000.0130 Multiple Regression for Spouse and Non—spouse Caregivers' Perceived Impact on Schedule Utilizing Elderly Zecipient's Functional Status, Caregiver Sex, and Socioeconomic Status..................134 Multiple Regression for Spouse and Non—spouse Caregivers for Perceived Impact on Health — Utilizing Recipient's Functional Status, Caregivers Sex, and Socioeconomic Status.......137 Multiple Regression for Spouse and Non—spouse Caregivers for Perceived Impact on Finance Utilizing Recipient's Functional Status, Caregiver Sex, and Socioeconomic Status..................l38 viii 5.13 Page Multiple Regression for Spouse and Non—spouse Caregivers in Perceived Impact from Abandonment Utilizing Elderly Recipient's Functional Status, Caregiver Sex, and Socioeconomic Status........l39 Multiple Regression for Impact from Abandonment Utilizing Assistance, Elderly Recipient's Functional Status, Caregiver Sex, and Family Relationship...................................140 Hypotheses Acceptance or Rejection, and Significance0.000.00.00..0..00......0000.0...0.176 ix Figure LIST OF FIGURES Page Caregiver Model from ”Caregiver Responses to Managing Elderly Patients at Home” by B. Given and C. Given,19850000.....00000.000.0.00000000047 Model for Caregiver Study Involving Caregiver Characteristics and Perceived Burdens...........48 Graphic Presentation of Findings................26 Nursing Model: Reproduced by permission from Orem, Dorothea E.: Nursing: concepts of practice, ed. 3, New York, 1985, McGraw—Hill Book Co.; copyrighted by The C.V. Mosby Co., St. Louis......................................193 Chapter I THE PROBLEM Introduction Caring for a chronically ill, elderly person is usually a progressive, all-consuming activity which cannot be incorporated into a caregiver's life without significant impact on his/her sense of self, time, freedom, career, and relationships with others. In general, families assume a caregiving role without an understanding of what is involved, or of the consequences of the role (Archbold, 1982). Some facts, statistics, and trends will be presented in the next few pages, in order to describe the importance to health professionals and legislators of evaluating the facets of caregiving. According to the projections in the "Information Please Almanac" (Johnson, 1987), there will be 35.4 million people between the ages of 00-79 and 10.1 million peOple 80 years or over by the year 2000. Day (1985) highlights the trends of the societal changes that are reshaping our family roles and are affecting the nature of aging in the United States. “More Americans are living past their 85th birthdays, making the 85+ age groups the fastest growing segment of the United States population" (Day, 1985, p. 1). By the eighth and ninth decade of life, the chances of being functionally impaired in some way, and in need of health and social 2 services increases significantly. "The number of disabled elderly Americans is expected to more than double between 1985 and 2020” (Day, 1985, p.1). The old are living longer because of improved technology. Thus, instead of the problems of the elderly being acute and short-term, they are multiple, chronic, and long-term. "In 1985, approximately 6.6 million Americans aged 65 and older are in need of long-term care. Of this group, 1.4 million are living in nursing homes, and another 5.2 million are living in the community with disabilities" (Day, 1985, p. 6). That may leave them in need of long—term care from families or friends. The major share of support and/or care is provided to the elderly by the family. Increase in life expectancy, delayed marriages, and fewer children per family are increasing the ratio of parents to children who are available to look after them (Day, 1985). "Families (not government or agency programs) provide between 80 and 90 percent of medically-related care, home nursing, personal care, household maintenance, transportation, and shopping" (Day, 1985, p. 4). According to Day (1985), families are not abandoning their kin. Brody (1985) projects, ”Over five million people are involved in parent—caring at any given time" (p. 21). It is projected that there will be 225 elderly (85+) per 1000 offspring by 2000 (Day, 1985). The elderly receive personal care first from the spouse (if living), then from a daughter, if the elderly person is a widow or widower, and then from a sibling, when other 3 family members are not available. Women comprise 70 to 80 percent of the caregivers (George, 1984). The fact that women are the main caregivers is supported in the literature (Archbold, 1982; Brody, 1981; Snyder & Keefe, 1985; George & Gwyther, 1986; Hawranik, 1985; and Brody, 1985). "Most of the sons and male relatives are turned to for advice on business matters, help with transportation and home maintenance" (Day, 1985, p. 5). It is possible that there may be more than one adult child helping an impaired elderly member, but there is usually one family member who is considered the primary caregiver. Also, the adult child may be providing care or support to more than one parent, for example, a parent and parent—in-law (Callahan, 1980). The larger proportion of elderly who are institutionalized are there either because they have no close relatives available or they suffer from disabilities that are too difficult to handle at home. Many caregivers are aging themselves. The average age of spouses providing care for a husband or wife was 65 in the early 1980's, with 30 percent of the caregivers ages 74. and older (Montgomery, 1984). "Most adult children providing care to the very old are over 50", according to Day (1985, p. 8). Decrease in strength and endurance, and the beginning of health problems can arise in the over 50 age group. Brody (1985) also discusses the fact that the largest proportion of daughters caring for their parents are in their 40's and 50's. According to research done by Brody (1985), "40 percent of people in their late 50's had a 4 surviving parent, as did 20 percent of those in their late 60's" (p. 20). As mentioned, families are providing most of the support for the functionally impaired elderly. The cash values of services performed by families far exceeds the combined costs of government and professional services to elderly, both living in the community or living in institutions. "A 1984 report to the Federal Council On Aging estimated that the support provided to a disabled elderly family member accounted for the equivalent of full-time work in between 30 and 40 percent of households providing care" (Day, 1985, p. 8). An estimate of retirement income in comparison to costs of a spouse providing care to a partner was not given. Brody (1985) also mentions funding as an issue for many families. In some families, the caregiver has to quit his/her job in order to provide care for the elderly person, or he/she may have to assume the added responsibility of a job in order to keep the family financially solvent. Financial costs are not the only problems of caregiving. There are emotional stressors, conflicts in family relationships because of demand on time and lack of privacy, disruption of living patterns, disruption of family routines, and physical strains (George & Gwyther, 1986; Fitting, Robins, Lucas & Eastham, 1986; Cantor, 1983; Johnson, 1983; and Snyder & Keefe, 1985). 5 Archbold (1980) cites social isolation as a universal problem for the caregivers. The requirements for care, especially of those elderly with very limited physical or mental capacities, change the life style and activities of the caregiver. There is a general decrease in freedom of mobility and time because of the tasks, such as bathing, dressing, exercising, feeding, meal preparation, symptom control, and providing transportation. Social activities are often decreased and 'spur of the moment' activities are impossible. Archbold (1982) states that "the caregiver for an older family member faces sustained or increasing dependency with no predictable end" (p. 13). Women can suffer from unrelieved heavy physical labor of caregiving. Cantor (1983) cites that spouses may be the highest risk group among caregivers because they are older themselves, therefore, they are predisposed to health problems, and they have no children at home to assist them. There is a potential for isolation and psychological stress. Day (1985) verifies that many wives are often lonely, isolated, and exhausted. Snyder and Keefe (1985) state that caregivers in their study "described life style changes in terms of the inability to get regular exercise, the inability to plan for the future, the loss of time for one's self, 'cabin fever', the loss of interest in all activities, the loss of a sex life, and the loss of friends" (p. 6). Other health problems were also mentioned, such as pulled muscles, headaches, allergies, and hernias. 6 These problems, of financial strain, emotional and physical strain, and multiple demands on the caregiver need to be addressed. The role of the family caregiver providing support for the elderly will increase as the numbers of very old and potentially dependent elderly grow. Therefore, in thinking of the impact caregiving has on a person's life, the research question to be addressed in this thesis is, ”Upon controlling for variation in the elderly person's functional health status, how are selected caregivers' characteristics related to perception of burden?”. Several dimensions of burden will be eXplored, and they are: impact on schedule, impact on finances, impact on health status, and impact from family abandonment. The selected characteristics of the caregiver (sex, socioeconomic status, and relationship to the elderly person) will be analyzed for each dimension. In the following section, the definitions of these concepts and characteristics will be given. Definitions of Concepts The concepts that will be identified are perceived burdens, the caregiver, the elderly person, and the characteristics of the caregiver. The independent variables (the characteristics) are sex,income level and educational level of the caregiver, and the relationship of the caregiver to the elderly impaired person. The dependent variables are the perceived burdens. The elderly person's functional status will be added as another independent variable. The reason for the addition of another variable 7 is to examine if the relationship of caregiver characteristics to perceived burdens is affected by a variation in the elderly person's functional ability. The definitions of the concepts are as follows: 1. Perceived burdens will be identified as the impact of caregiving in the following areas: 1) impact on one's schedule; 2) impact on one's health status; 3) impact on one's finances; and 4) impact from family abandonment. 8. Impact on daily schedule will be identified as when the caregiver feels that he/she must eliminate things from his/her schedule, feels that he/she is unable to enjoy or participate in social or community activities, and feels that there are interruptions in his/her work or activities in order to provide care. b. Impact on health status will be identified as when the caregiver feels that the activities of caregiving, and managing the elderly person's medical care results in a change of health status for the caregiver. For example, the caregiver feels tired all of the time from problems of caring for someone or the caregiver's health has become worse since caring for the elderly person. c. The impact on financial status will be identified as when the caregiver feels that the additional expenses incurred, such as purchasing of medical care, medical supplies, and services, has placed a financial strain on the family. d. An impact from family abandonment will be identified as when the caregiver feels that caring for an 8 elderly family member places a strain on family relationships. Factors that can be identified as impact on family relationships are when the caregiver believes that other family members have left he/she alone to care for an elderly family member, or family members depend too much on him/her to care for the elderly relative. 2. The caregiver in this study will be identified as a Spouse, adult child, or other family member who self— acknowledges that he or she is primarily responsible for caring for a debilitated elderly person. 3. The elderly individuals who are in need of care are considered to be persons 64 years of age or over who have at least one chronic disease, and must need assistance with two activities of daily living (such as toileting or dressing),and/or activities such as shopping and housework. The characteristics of the caregiver will be operationalized in the following way: 1. The sgx of the caregiver respondent will be determined by the individual identifying his/her sex in the screening instrument. 2. The relationships of the caregiver to the elderly person will be defined as the adult child, spouse, child-in- law, siblings and other relatives. In considering in—laws, the primary responsibility for caring for the elderly impaired person may be the daughter or son, but in the case of the son, it is often his wife (the daughter—in—law) who has the responsibility for the care of his mother or father. The other relative will include grand daughter, a 9 sibling, niece, nephew, brother—in-law or sister-in law, or cousin. 3. The income level will be identified as the total income of a household. If the spouse is a caregiver, the total income of the husband and wife will be used. For the non-spouse caregivers, the total household income of the caregiver, and the total income of the elderly recipient of care will be identified separately. Income can be identified within $1,000 increments up to $10,000, then every $4,999 (e.g. within $10,000 - $14,999) increments up to $30,000. All those above $30,000 will be in the same level. (NOTE: The median income of families in 1983 was $24,580 [Keane, 1987]). 4. The educational levels will be divided into grade school or less, some high school, completion of high school, some college or technical training, completion of college, and graduate or professional schooling. Functional Status Variable The functional health status of the elderly recipient of care is the independent variable that will be added to show variation in the patient's functional ability. This variable will be identified through questions regarding the patient's functional level as measured by the activities of daily living, instrumental activities of daily living, and mobility. The functional status of the elderly person is used in this study because various levels of impairment can affect the degree of involvement of care provided. In other words, those elderly more disabled probably require more assistance than those less impaired. 10 Snyder and Keefe (1985) su:gested that the "higher the level of disability, the more likely the caregiver reported suffering health problems" (p. 5). Even though the statement by Snyder and Keefe only addresses the health status of the caregiver, it demonstrates that functional status of the elderly person can have an impact on the life of a caregiver. As mentioned earlier, the elderly person must have one chronic disease and be deficient in two ADL's (toileting, feeding, etc.), and/or instrumental activities of daily living such as shopping. (These are addressed in a questionnaire.) Hypotheses The hypotheses are as follows: 1. For patients with similar functional status, there is a relationship between the caregiver's perception of impact on one's schedule and the characteristics of sex, income level, and educational status of the caregiver and the relationship of the caregiver to the elderly person. (Sex) a. The female caregiver perceives more negative impact on her schedule than the male caregiver. Horowitz (1985) found that son caregivers less often felt that their time for leisure activities had been affected by caring for a parent (22% compared to 56% of daughters). The female caregiver may be involved with family or occupational obligations so there are more competing demands on her time. If she is an older caregiver, she is free from child-rearing 11 responsibilities, so she feels an impact on her schedule when she is obligated to care for the spouse. There is less impact on male caregivers even though they perceive a difference in life style. They receive more assistance from relatives or children than the female caregiver, because caregiving is not an expected role of the male (Johnson, 1983). Both Johnson (1983) and Snyder and Keefe (1985) found that male caregivers utilized help from formal providers more so than female caregivers. Brody (1985) in a survey of three generations of women found that both working and non-working women provided roughly equal amounts of care to their impaired mothers. Twenty- eight percent of the women quit their jobs and also felt that caregiving interfered with time with their husbands. There is an expectation in our society that women assume the role of caregiver even if she has other obligations. (Income and Education) b. Caregivers in the lower socioeconomic groups perceive more impact on schedule than caregivers in the higher socioeconomic groups. Callahan, Diamond, Giele and Morris (1980) state that "lower income groups provide physical care, household help,child- minding, and recreation, while middle—income groups tend to help financially" (p.39) in these types of activities. Archbold (1982) found that 12 caregivers in lower income ($7,000—$9,999) had to adhere to a rigid schedule. Those in higher income level ($15,000 — $19,999) used more community resources and services. Archbold (1982) documented that the caregivers with a higher educational level (such as lawyers, physicians, and nurses) have more access officially and unofficially with a range of social supports. McAuley (1984) concluded from a study on in-home- care for elderly individuals that "people with greater education and social resources receive more services" (p. 62), probably because they are more knowledgeable regarding access to health care resources. In considering the fact that those with higher education receive more services, caregivers of these individuals might perceive less impact on daily schedule. (Relationship) c. Adult child and other relative caregivers perceive greater impact on schedule than the spouse caregivers. The adult child perceives more impact on his/her schedule because of more competing commitments such as family and/or occupational obligations. Johnson (1983) demonstrated that adult child caregivers (married and unmarried) have a higher percentage of social obligations than the spouse or other relative caregivers (adult child, 53%; spouse, 23%; and other relative, 28%; p < .001). The 13 adult children expressed that their parent's illness had an affect upon their social lives. George and Gwyther (1986) document that "adult- child caregivers report the lowest level of visits with family and friends and time spent relaxing" (p.256). The spouse caregiver will perceive less impact than the adult child because they are generally older and have less familial or occupational obligations. 2. For patients with similar functional status, there is a relationship between the caregiver's perception of impact or one's finances and the characteristics of sex, income level and educational level of the caregiver, and the relationship of the caregiver to the elderly person. (Sex) a. The female caregiver perceives more impact on finances than the male caregiver. Some female caregivers might have to resign from a job in order to care for an elderly person. Brody (1985) states, "that twenty-eight percent of our sample of non-working women had quit their jobs because of their elderly mothers' needs for care" (p. 25). Studies were not found that documented specifically an impact on financial status by sex. (Income and Education) b. The caregivers in the lower socioeconomic groups perceive more impact on finances than those in the higher socioeconomic groups. Lower income groups have 14 less income for resources and services. Those in the lower group may be able to receive assistance through federal or state programs, such as Medicaid. Those in the middle income group are often not eligible for any kind of assistance. Archbold (1982) discussed that care providers, who are usually in the lower socioeconomic group (compared to care managers), feel they had diminished benefits and increasing costs as a result of caregiving. Chenoweth and Spencer (1986) found that "lack of finances meant that care at home was only the alternative, and in—home help was not affordable" (p. 270). Therefore, there would be more impact on the caregiver's financial status in the middle and lower income groups. McAuley (1984) states that education is probably indicative of a higher socioeconomic status, so those with a higher education perceive less impact in finances than those with less years of education. Those with higher levels of education probably have more financial resources available to them. According to Exter (1987) good education often results in a good income. (Relationship) c. The spouse caregiver perceives greater impact on financial status when compared to the adult child or other relative. George and Gwyther (1986) report that spouse 15 caregivers have significantly lower household incomes than the adult child and other types of caregivers. The adult child or other relative such as niece or nephew (if younger) may have opportunity to increase their income. If the caregiver is a same age peer, such as sibling, impact would be same as spouse caregiver. The spouse caregiver is living on a fixed income. Cantor (1983) found that spouses reported a greater degree of financial strain than the adult child or other relative because the spouse caregiver's household income was the lowest. In 1984 most of the aged family groups continued to have poverty rates that were high compared with those of other adults (Radner, 1987). "Within the group aged 65 or older, the older family units (a unit of two or more persons) improved their position slightly relative to the younger age units, but in 1984 their incomes remained far below those of the younger age units" (Radner, 1987, p. 55). In 1984 the poverty rate for aged persons continued to exceed the poverty rate for each age group in the 25—64 age range (Radner, 1987). According to Exter (1987) even though median household incomes had greatest gain between 1980 and 1985 and occurred among those 65 and over, incomes drop with increasing age after age 54. For example, the median income of households 16 headed by 55 to 64 year olds is $25,600; among householders aged 65—74, the median income is $15,400; among those aged 75 and over, the median income is $10,500 (number of household members not provided). 3. For patients with similar functional status, there is a relationship between the caregiver's perception of impact on his/her health status and the characteristics of sex, income level, educational level of the caregiver, and the relationship of the caregiver to the elderly person. (Sex) 3. The female caregiver perceives more impact on health status than the male caregiver. Johnson (1983) reported that husbands probably experience less strain because others help more with the provision of care. Men are not expected to participate as much in domestic functions, therefore, they receive more assistance. Also, men request more help from formal providers, so feel less strain. Horowitz (1985) reported that 31% of son caregivers thought less often that their emotional health had changed for the worse (2 = 32, x = 7.5,p < .05) in 2 comparison to daughter caregivers. The younger female caregiver has several roles to fill such as mother, wife, and possibly an occupational role. Too many competing demands can cause stress and change in health status. Snyder and Keefe (1985) found that elderly women, who are mostly the 17 caregivers, lived on low fixed incomes and many social services are not covered under Medicare or insurance plans. Also, women tend to view such things as housework as their duty, so do not hire anyone even when caregiving becomes too burdensome. Thus, the women, especially the elderly female caregivers, are at higher risk for suffering health problems. (Since females are considered to be the predominant caregivers, there is not a lot of literature on affects of caregiving on males.) (Income and education) b. Caregivers in the higher socioeconomic group perceive less impact on health status than those in lower socioeconomic group. Those in the higher socioeconomic group have more means and resources in order to utilize health services; also, those in the higher socioeconomic group may be able to afford assistance, so feel less fatigue, stress, or strain from caregiving. McAuley and Arling (1984) found that people with greater education and more social resources utilized more services. Education is probably indicative of knowledge about services (McAuley and Arling, 1984, p. 62). There were not any studies found on how caregivers in various income levels perceived the impact on their health status. 18 (Relationship) c. The spouse caregiver perceives more impact on health status than adult child or other relative caregivers. Cantor (1983) suggests that spouses may be the highest risk group (from physical strain from caregiving) because they are older themselves and predisposed to health problems. Johnson and Catalano (1983) documented that 17% (of 115) of spouse caregivers had reported a decline in health after eight months of caring for a disabled spouse. (Adult- child caregivers reported no significant change.) Adult children, even though they may have many demands (employment, family) are probably younger, and may have more assistance available if living with spouses or children. The spouse is generally alone with the impaired person and doesn't have any relief readily available. Also, the spouse caregivers are usually older and suffer from more chronic disease or are predisposed to illness. If the other relative caregiver is a sibling and the same age peer as the care-recipient, the perception of impact on health status might be the same as the spouse caregiver. Cantor (1983) documents that spouse caregivers perceived their health to be fair or poor (84%), adult children perceived their health to be good or fair (95%), and other relatives perceived their health to be good or fair (82%). 19 4. For patients with similar functional status, there is a relationship between the caregiver's perception of the impact from family abandonment and the characteristics of sex, income levels and educational levels of the caregiver and the relationship of the caregiver to the elderly person. (Little documentation was found on the impact on family relationships as affected by sex, income level, educational level, and relationship of the caregiver, except general statements that there are strains on family relationships while providing care to an elderly person.) (Sex) a. The female caregiver perceives more impact of family abandonment than the male caregiver. The male often receives more assistance from other family members because the caregiving role is not an expectation for the male (Johnson, 1983; Horowitz, 1985). The female is expected to care for an impaired elderly person and so may resent the fact that other family members are not helping; thus, causing a disruption in family relationships. The female is also expected to continue her obligations as a mother and wife if she is a younger adult-child caregiver, thus, feeling others are leaving her alone to care for the elderly person. Brody (1985) reported that working daughters were more likely expected to adjust their work schedules for parent care than working sons were expected to adjust their work schedules. The expectation of a 20 woman being a caregiver can lead the woman to perceive she is being "dumped on" by the other family members. The single female (adult child or other relative) could particularly perceive abandonment if she is also employed and has no one readily available to assist her. (Income and Education) b. Caregivers in the higher socioeconomic groups perceive less family abandonment than those in the lower socioeconomic groups. Scott et al. (1986) found that the majority of caregivers of Alzheimer's patients reported a predominately positive feeling of social-emotional support from family. The average yearly income of this group of caregivers was $24,000 to $29,000. Worcester and Quayhagen (1983) documented that lower income caregivers view the care and responsibility of parents as less burdensome than middle classes. The satisfaction could indicate family support, but there is very little documentation on perception of family abandonment among lower, middle, or upper income groups. (Relationship) c. The spouse caregiver perceives greater impact from family abandonment than the adult child, or other relative. The adult child possibly has more family members around her, so perceives less abandonment. Chenoweth and Spencer (1986) stated that 21 "sometimes the primary caregiver was resented by others in the family who denied the problems" (p.270) of the recipient of care. Johnson and Catalano's (1983) and Poulshock and Deimling's (1984) studies indicate that more dependent care— recipients and more disruptive care-recipients had a negative effect on caregiver's relationship with family members. Types of relationships of caregivers to elderly individuals were not included in this study. The authors did not differentiate types of caregivers. The spouse caregiver (or same age peer caregiver) may feel abandoned by family members if little assistance is given because he/she is living alone with the impaired person. Purpose of Study The purpose of this study is to look at how certain characteristics of the caregiver affect the caregiver's perception of impact on his or her life while caring for an elderly adult. In this study, feelings will be explored as to whether the caregiver believes that caregiving to an impaired elderly adult has an impact on his/her schedule, physical and mental status, finances, and family abandonment. The recognition of what the caregivers feel are burdens of caring for an individual in the home, will contribute to the process and need of collecting consistent data so that health professionals can develop support systems and identify strategies to help caregivers cope. In 22 this way, adequate documentation can help establish the need for legislative and policy changes regarding caregiving and the need for supportive services in the community for caregivers. Consistent data are needed to adequately document that there are burdens to caregiving for an elderly adult with a chronic disease. Also, a profile of the characteristics of those with certain dimensions of impact may be identified. The research can also enable the clinical nurse specialist to begin to become sensitive to the burdens, and thus, help develop strategies in working with caregivers. Assumptions There are some assumptions in this study. First, it is assumed that the questions presented to the caregivers participating in the study will be relevant and meaningful to the participant. Second, it is assumed that the individual caregivers will answer the questions honestly and Openly. Third, it is assumed that the caregivers are able to recognize and identify perceived burdens of caregiving such as impact on schedule, or impact on finances and abandonment. Limitations In dealing with the limitations of the study, there are several factor to discuss. One limitation involves the blending of different variables and/or groups together, thus obscuring the differences among each group. The study will involve caregivers from both rural and urban areas. There will not be an attempt to separate the perceived burdens of 23 the rural caregivers from the urban caregivers. There is no definitive information in the instrument to identify the rural caregivers from the urban caregivers. The limitation is that perceptions of burdens might be different for each group, but the differences will not be shown in this study. Certain variables will not be addressed in this study such as personality traits of caregiver, length of time of caregivers marital status (except when caregiver is obviously a spouse), and any support from agencies or groups. These variables may also have an affect on perception of impact as a result of caregiving along with the variables addressed. The functional status of the elderly person will be addressed, but not the type or severity of the elderly person's illness. In the instruments used in the study, the questions are close—ended. The items may not reflect all of the feelings or experiences of the example of caregivers. In this study, the perceived impact on the lives of caregivers caring for someone under the age of 64 is not addressed. Those who cannot read or write are generally excluded from the study unless the individual has someone available to assist him/her in completing the written questionnaires. There are two other factors that will cause limitations in this study. The first one is that the relationship of the caregiver and the chronically-ill elderly individual before his/her illness and before his/her dependency on the caregiver will not be explored. Thus, there is a limitation 24 on knowing whether the relationship prior to caregiving activity has an affect on the perception of the caregiver during caregiving involvement. The second factor is that the participating caregivers in the study are asked to volunteer for the study. Volunteers may perceive caregiving differently than those who refuse to participate. Therefore, the burdens perceived in the study may not be truly representative of all caregivers. W In Chapter I, the growth of the elderly population, who are potentially individuals with either functional or mental impairment, and the problem of caregiving for an elderly person in the United States were introduced. There are five remaining chapters in the thesis. In Chapter II, concept development will be presented. The review of literature involving each concept of caregiver, caregiver characteristics, burdens, and the elderly person will be presented in Chapter III. The latest research studies and the results of the studies will be discussed in order to lend support for the study. The research design used, the population and the instrument used, and the data collection procedures used will be presented in Chapter IV. In Chapter V, the presentation of data, the analysis of the data, and the results of the study will be discussed. The interpretation of the results and the implications of the findings for advanced nursing practice, research, education, and primary care will be presented in Chapter VI. Chapter II CONCEPTUAL FRAMEWORK Overview The purpose in Chapter 2 is to develop each concept of the problem statement. The specific problem is: ”How are selected caregiver characteristics related to perception of burden?" Therefore, the concepts of caregiver, of elderly person, and of perceived burdens will be presented. Each concept will first be defined and then secondly deveIOped through evidence reviewed in literature. Within the concept of caregiver, the characteristics of age, sex, and socioeconomic status and the relationship of the caregiver to the elderly person will be addressed. In the section on the elderly person, some information on functional status will be included. Through a literature review, the relationship will be shown among the concepts. Caregiver The caregiver is identified as a spouse, adult child, or other family member, who is self-acknowledged as being primarily responsible for providing care to an elderly person. According to most studies, the typical ”caregiver" for the elderly is a woman, in her 40's or 50's, with a husband and children to look after, or she may be a grandmother experiencing the inevitable changes of aging (Brody, 1985). She may have to attend to a chronically ill 25 26 elderly person in her home day and night. Day (1983) states that "the majority of offspring caring for a disabled elderly parent are over age 50. The average age of spouses caring for a disabled partner is 66, with more than 30 percent being over age 74” (p. 1). The spouse, being older, may also suffer from a chronic illness or disability. According to Archbold (1982), even though caregiving is a family endeavor, one family member is usually identified as the caregiver. In general, this responsibility falls to the spouse, where one exists, or to a daughter or daughter- in—law. Caregiving, according to Archbold (1982), is considered women's work. Johnson (1983) found "that the principal of substitution rather than shared functioning among family members is more common, which means that serial availability of relatives exists in descending order from intimate to distant relationships" (p. 382). In other words, if the spouse is available, he or she provides the care; among widows, the child is the one who provides care; and among the childless or unmarried, other relatives provide the care. Johnson (1983) also discussed that if the spouse was the caregiver rather than the adult child, the patient was less likely to be institutionalized, and less conflict and stress was reported. According to Johnson and Catalano (1983), the spouse provides the most comprehensive care. An adult child often has competing commitments. When the older person has to depend on more distant relatives, there is less involvement in care by the other relatives. 27 There are two roles of caregiving according to Archbold (1982): care providers who perform the work themselves and care managers who obtain and manage the services of others. Care providers, will be identified as caregivers throughout the study. Brody (1981) states, "that additional research has confirmed the identity of the principal caregivers. Belatedly, 'alternatives' to institutional care are now being advocated, the natural or informal support system has been discovered and the 'family' is being cheered on in its caregiving role” (p. 472). These phrases are probably euphemisms for adult daughters (and daughter—in-laws), who are the true alternatives. Brody (1981) adds that if the impaired older person has a spouse, the vast majority of services are provided by the spouse, together with the adult daughter or daughter—in—law. When the older person is widowed, and almost nine million older persons are widowed, the women in the next generation are the principal caregivers. Also, older people in need of help look to daughters rather than sons for assistance and services, such as to shop and run errands, to give personal care, to plan meals, to administer medications, to transport to physicians' offices, and to mobilize, coordinate and monitor any services from other sources. Men may give assistance with household maintenance type tasks. Day (1985) supports this by stating that "women make up about between 70 and 80 percent of the caregivers. Sons and male relatives are 28 turned to for advice on business matters, help with transportation, and home maintenance (p. 5). In considering spouse caregivers, who generally provide the most comprehensive care, there may be a male caregiver. Female-spouse caregivers and male—spouse caregivers have usually been studied together. There have only been a few studies that have analyzed differences in impact on the lives between male and female caregivers (Fitting, Robins, Lucas, & Eastham, 1986; Zarit, Todd, & Zarit, 1986; Snyder & Keefe, 1985; and Johnson, 1983). It is generally assumed that females are usually the caregivers, as mentioned earlier, but Cantor (1983) found that slightly over half of the spouse caregivers in her study were male. Men may perceive a different impact from the caregiving role, since they are not accustomed to handling household responsibilities. Women may resent the role of caregivers in later years, because they look at their later years as a time for more personal growth. In other words, they no longer have child-rearing responsibilities. Caregivers may endure severe economic, personal, and social stress in caring for their elderly relatives. According to Johnson (1983), there is a dyad in the caregiving unit, the donor (caregiver) and the recipient of the support, unless there happens to be a larger unit of family that cooperates and interchanges the caregiving role. Caregivers are subject to stress and strain and at risk for becoming over burdened. Government programs and policies do little to support caregivers in the home. 29 Little information in the literature review is given as to whether there are those in certain socioeconomic levels, who tend to provide care for an elderly impaired person. Archbold (1982) found that care managers (those who obtain and manage the services of others) have a higher socioeconomic status (income, education, and occupation). The care provider may be torn between his/her obligations to work and obligations to the elderly person. Those in the higher socioeconomic level may have a broad range of social supports, such as lawyers, physicians, nurses, and social workers, more so than those in the lower socioeconomic level. Most of the studies such as Zarit, Todd, and Zarit (1986), Cantor (1983), and Chenoweth and Spencer (1986), provide information on how many caregivers are in certain socioeconomic levels, but do not provide information on impact on caregivers' lives in relation to socioeconomic status. Therefore, in summary, the caregiver is typically a woman in her 40's or 50's, with husband and children, or she may be a grandmother experiencing the inevitable changes of aging (Brody, 1985). The average age of a spouse caring for a disabled partner is 66. One family member is usually identified as the caregiver, and in general the responsibility falls to the spouse, if one exists, or to a daughter or daughter—in—law. According to Archbold (1982), caregiving is women's work. The family is being cheered on in the caregiving role, but the daughter or daughter-in-law is usually the responsible caregiver. There are male 3O caregivers, generally a spouse, but few studies have been done on difference (if any) of perceived impact between male and female caregivers. Also, there is little information on differences of perceived impact of caregiving according to socioeconomic status. In this study, the perception of impact by the caregiver in relation to age, sex, socioeconomic status, and relationship of caregiver to the elderly person will be addressed. Elderly Person In thinking of the elderly person, Beck and Phillips (1983) define elderly individuals as "frail when because of mental or physical limitations, they no longer can independently meet all of their daily needs' (p. 97). The elderly are often afflicted with multiple functional and chronic problems. Garner and Mercer (1982) cite that in nursing homes 55 percent may have cognitive deficits and residents generally have four chronic or crippling disabilities, such as cardiovascular disease, ranking first with organic brain syndrome, fractures, and arthritis. Orthopedic problems can cause the elderly person to be confined to bed or chair. The conditions can be of a degenerative and disabling nature. Johnson and Catalano (1983) found that with continuing poor health, and dependence upon others, the elderly person's mood and satisfaction with social supports decline. Therefore, more conflict with the caregiver develops. Feller (1983) states that "the need for the help of another person increases sharply with age, especially among 31 the elderly. Fewer than one in ten who are 65-74 years of age need help, compared with four in ten who are 85 years of age or over” (p. 1). For example, the rate of needing help in at least one basic physical activity (walking, going outside, bathing, dressing, using toilet, getting in and out of bed and chair) was higher among persons in the older age group (65-74 yrs.-52.6 per 1000 persons; 75-84 yrs. - 114.0 per 1000 persons; and 85+ yrs. - 348.4 per 1000 persons, [Feller, 1983]). The rate per thousand peOple who had a device to control bowel movements or urination or other trouble controlling bowel movements or urination increased with age. A sharp increase in older people usually staying in bed was shown between 65—74 years of age (11.3/1000) and 75 years and over (30.4/1000). The information just presented, means that a caregiver may have to handle or manage daily activities, incontinency, lifting, and turning, along with managing health problems. "At present, family members provide 80 percent of all personal care and medically related services" (Archbold, 1982, p. 12). Impaired elderly require social services, nursing care, nutrition, and personal aid. These services are often not reimbursable (Medicare has strict criteria for reimbursing skilled nursing and aid services); their family members provide the care. If family assistance is not available, the elderly person is placed in a nursing home (Peck, 1983). The degree of impairment of the elderly person may affect the perception of caregiver burden. George and Gwyther (1986); Sushil (1985), and Snyder and Keefe (1985) indicate 32 that those caring for a more seriously impaired elderly person (more serious symptoms, more dependencies in ADL's) experience a greater sense of social and physical burden and a high level of stress. According to Day (1985), there has been a significant increase in the ratio of the elderly 85 and older to their adult children. The increase is as a result of longer life expectancy, delayed marriages, and the fall in the number of children per family. The increased ratio will likely continue to occur over the next two decades. Therefore, the ratio of disabled elderly (over 85) to their offspring will continue to rise. Many of the elderly, who need help, are very old and most are widowed. The adult children, primarily daughters, are the caregivers to the elderly dependent adults. Disability and the need for assistance rises with advancing age. With the advances in medical technology, acute medical symptoms are brought under control, but people live longer with a chronic disease. Therefore, the impaired elderly person needs assistance at home since they have some lost mental or physical abilities. Day (1985) states that "the major health needs of the elderly have changed from those associated with acute short—term illness requiring skilled nursing care in hospitals to needs associated with multiple chronic conditions requiring the use of drugs and help with ordinary daily activities” (p. 6). In summary, the elderly recipient of care is frail, who because of mental and physical incapacities can no longer 33 live independently. Approximately 80 percent of those over 65, have some type of chronic illness, and those over 85 years of age may be widowed. These impaired elderly persons require nursing care, personal care, and social services, which are often provided by a family member (most likely an adult daughter). In this study, the elderly person must be 65 years of age or older, have at least one chronic disease, and must need assistance with an activity of daily living or with an activity such as shopping or housework. The functional health status of the elderly person will be explored in this study, because the patient's health status may have an affect on the caregiver's perception of impact on his/her life. Burdens The concept of burden has been identified as an impact on one's schedule, an impact on one's health status, an impact on financial status, and an impact from family abandonment. If a middle aged (40-50 years) daughter is caring for an elderly disabled parent, there is often an impact on the family finances, family relationships, on daily freedom such as shopping or social activities, and on the caregiver's energy level. A middle aged woman is beginning to realize a decline in her energy level. A spouse caregiver is usually older so he/she also has less stamina, and may have developed some physical problems of his/her own. Spouses are also usually more isolated, in that they are alone with their partners. 34 Worcester and Quayhagen (1983) reviewed studies that ”multiple situational stresses in caring for elderly showed family members have resulted in decreased satisfaction with the caregiver role” (p. 62). the caregiver may have to handle both psychological and physical problems. He/she may have to be the decision—maker for the elderly person. The other burdens can be financial costs, exhaustions, conflicting demands on time, disruption of family routines and relationships, and disruption of living patterns, such as work, recreation and participation in social and community activities. There can be social isolation, particularly for a spouse (Day, 1985). On the other hand, according to Archbold (1980), some caregivers do not perceive caregiving as disruptive to their life style. They view it as being a positive and self- satisfying experience. The more positive attitude may be attributed to those caregivers who have been providing care for a short period of time or are caring for an elderly person who is not severely incapacitated. In the following pages, the various dimensions of perceived burdens of caregiving will be addressed. Impact on Schedule The impact on schedule has been identified as when the caregiver feels that he/she must eliminate things from his/her schedule, feels that he/she visits family and friends less frequently, and feels that there are interruptions in work or activities in order to provide care. 35 Archbold (1982) discusses that decreased freedom in mobility and time, such as inability to participate in social activities and an adherence to a rigid schedule, is one of the costs of caregiving. There is a decrease in freedom on a daily basis and a loss of freedom in a larger sense, such as being unable to make any long—range life plans. The loss of daily freedom is accentuated when the parent or elderly person cannot be left alone. Minimal involvement from other family members would help alleviate the strain, but often caregivers of an elderly parent are single women or women without family support, and therefore, have no respite from caregiving (Archbold, 1982). The caregiver may not feel free to invite friends into the home, either because of embarrassment over the behavior of the elderly person, or because of the amount of tasks that have to be completed (e.g. bathing, feeding, dressing, and treatments). All activities may be centered around providing care for the elderly recipient. He/she may only have a limited time for shopping because of the need to complete such tasks as feeding, exercising the elderly person, or bathing on a regimented schedule or in a timely manner. It may be unsafe to leave the elderly person alone because of his/her mental or physical incapacity. Therefore, there has to be someone in the home at all times. The caregiver can feel trapped. He/she has to plan all activities; no activities, such as shopping, can be done spontaneously. They may be unable to enjoy time for themselves due to the number of tasks that need to be 36 accomplished not only for the family but for the elderly person. Even when substantial assistance from an agency is available to the caregiver, the fact that relief time is not in their control prevents them from enjoying or utilizing the freedom (Archbold, 1982). Those in the lower socioeconomic group may not have the financial resources to obtain any respite. Also, those in the higher socioeconomic group may have activities which they have to limit because of providing care to an elderly relative. As mentioned, there can also be a loss of freedom in the larger sense, such as being unable to make any long- range life plans (Archbold, 1982). Relocation, retirement plans, and vacations can be affected. Because of the financial cost of caregiving, the caregiver might not be able to take a vacation; or because of no respite care, either from the extended family or community, the caregiver cannot leave home for a vacation. The elderly person may have always lived in one location where he/she has a family physician aware of his/her condition. Therefore, relocation is difficult because of the inconvenience of finding a new doctor to handle the elderly individual's problems. A move, for the caregiver or caregiver's family, may also be impossible because the impaired elderly person, living in the caregiver's home, cannot tolerate a move physically or emotionally. Parental anxiety over something happening to the caregiver can increase the caregiver's frustration and loss of freedom. The care recipient might want to know all 37 details of the caregiver's activities, therefore, adding to the caregiver's sensation of feeling trapped. Therefore, in summary, an impact on one's schedule can be an adherence to a rigid time schedule, being unable to enjoy or to participate in social or community activities, a lack of spontaneity in doing activities, a feeling of entrapment in the home, and in a larger sense, inability to make future plans for a vacation, retirement, or a move to another geographic area. In this study, the caregiver's perception of impact on schedule, such as interruption of activities, visiting with friends and family less, and eliminating activities from his/her schedule, will be explored. The impact of caregiving may be perceived differently by caregivers with different characteristics, such as sex, socioeconomic level, and relationship to the patient. Impact on Health Status The impact on health status has been identified as when the caregiver feels that the activities of caregiving, and managing the elderly person's medical care results in a change of health status for the caregiver. For example, the caregiver feels that he or she is constantly tired as the result of the problems of caring for someone or the caregiver's health has become worse since caring for the elderly person. The activities of caregiving can lead to mental and physical exhaustion. The caregiving activities of bathing, dressing, providing transportation, and housekeeping may involve 24 hours per day. Heavy physical 38 labor may be needed for bathing, lifting, transferring from a bed to chair, cleaning from incontinence, or managing aggressive or paranoid behavior. Women in the caregiving role can suffer from unrelieved heavy physical labor of caring for an incapacitated person. Other activities may be the management of constipation or diarrhea, feeding the person, and planning a well-balanced diet. Many caregivers have no training in these skills and develop strategies by trial and error (Archbold, 1982). Other functions of the caregiver are that he/she must be an advocate for medical care and be involved in financial decisions for the recipient. Caregivers may deprive themselves of medical care and rest periods because of the added responsibilities and/or cost of caring for an elderly person (Archbold, 1980). According to Day (1985), "most wives providing care bear the burden with little outside help. Many of them are lonely, isolated, and exhausted, and in need of help and support as much as the spouses they are looking after" (p. 8). Many caregivers are themselves aging. The average age of spouses providing care for an impaired husband or wife was 65 in the early 1980's (Day, 1985). Increased age predisposes caregivers to poor health or change in health status. Also, as one ages, one's energy level is less. Cantor (1983) pointed out that spouses are the highest risk group among caregivers, because they are likely to be old themselves. The dyad of husband and wife are usually living alone so all the personal care of the incapacitated spouse, 39 the housework and shopping are done by one person. Johnson (1983) reported that husbands experience less strain than the wife-caregivers, but there is little documentation on whether male caregivers feel more or less change in health status than female caregivers. Adult child caregivers may perceive less impact on health status because they are generally younger, and have less health problems than the spouse-caregivers. Exhaustion and physical problems can develop. Snyder and Keefe (1985) report in a study that physical and mental exhaustion were one of the top health problems of the caregiver. "The longer persons have been caregiving, the greater the chances that they are also suffering health problems” (Snyder & Keefe, 1985, p. 10). Also, the caregiver may already have a chronic illness, such as arthritis or diabetes, which is compounded by the role of caregiving. In summary, the impact on health status will be identified as to whether the caregiver feels that the activities of caregiving, such as bathing, feeding, housework, and managing the elderly person's medical care, leads to feelings of fatigue and whether caregiving results in a change in health status for the caregiver. The caregiver may deny themselves health care and periodic rest because of the overwhelming responsibility of caregiving. In this study, the caregiver's perception of a feeling of fatigue and of feeling that his/her health status has declined will be explored. The perception of impact of caregiving in relation to the sex, socioeconomic status and 4O relationship of the caregiver to the elderly person will be explored in this study. Impact on Financial Status The impact on financial status has been identified as when the caregiver feels that the additional expense incurred, such as purchasing of medical care, medical supplies, and services, has placed a financial strain on the family. This may be another type of burden for the caregiver. As the older person's degree of impairment increases, the costs of services also increases (Day, 1985). Many families cannot afford to purchase support services for even a short period of time in order to offer some relief. Support services are very expensive. Also the purchasing of medical care, medical supplies, and medications is costly. Day (1985) states that "the cash value of services performed by families far exceeds the combined cost of government and professional services to both elderly living in the community and those living in institutions" (p. 7). Day (1985) also cited a 1984 report from the Federal Council On Aging that estimated that between 30 to 40 percent of households providing care to a disabled elderly person were providing service equivalent to a full—time job. Day (1985) reported on another study, done in 1976 by the General Accounting Office, that shows the costs of services provided by a family or friend for a moderately impaired elderly adult was $181 per month. According to Snyder and Keefe (1985), many caregivers, which are often elderly women, are 41 living on fixed incomes. As a result, they do not have the financial resources to use a wide variety of programs if even available in their communities. Some caregivers have to resign from jobs in order to care for an elderly person. Brody (1985) states, "that twenty—eight percent of our sample of non—working women had quit their jobs because of their elderly mothers' needs for care" (p. 25). Archbold (1980) states, "that funding became an issue for all of the families" (p.80) in a study done by her. Families have to juggle finances in order to keep the family solvent. Sometimes caregivers have to assume an additional job in order to meet the added expenses incurred from the care of an elderly person in the home. In regard to spouse caregivers, Cantor (1983) cites data that the greatest strain spouses reported was financial strain along with physical strain. In summary, financial burden can be described as the additional expenses incurred, such as purchasing of medical care, medical supplies and medications, as when the caregiver has to assume an additional job in order to meet expenses, or when a caregiver must resign from employment in order to assume the care of the elderly person. Financial impact in this study will be defined as when the caregiver feels that the additional expenses incurred, such as purchasing of medical care, medical supplies, and services has placed financial strain on the family. The purpose of this study will be to identify if the caregiver perceives an impact on his/her financial situation in performing the 42 caregiving role in relation to the caregiver's sex, socioeconomic status, and relationship to the elderly person. Impact From Family Abandonment An impact from family abandonment was identified as when the caregiver feels that family members do not assist with the elderly person's care. Factors that can be identified as impacts on family relationships are when the caregiver believes that other family members have left her/him alone to care for an elderly family member, or family members don't understand the difficulty in caring for someone. Resentment among siblings (children of the elderly) may develop because the caregiver feels that he/she is giving all of the care to the impaired elderly parent with no support from other siblings. Another factor for resentment is that the caregiver feels that another sibling, who is not caring for the parent, is considered the favorite by the parent. A theme Hartford and Parsons (1982) found in working with small groups of caregivers was that ”members felt bombarded by helpful suggestions from other relatives" (p. 395). Other group members felt resentment that other relatives did not offer or provide more help. Chenoweth and Spencer (1986) found that some primary caregivers were resented by others in the families who denied the problems of the elderly person. Scott, Roberto and Hutton (1986) documented that a high degree of support was reported by 43 their families and a low level of emotional upset resulted from family support efforts. Spouse—caregivers may have a different perspective of family relationships than parent-caregivers. The spouse— caregiver may have less sense of family support in that they are alone with the ill person. Other family members may show disapproval at the type of care being given by the spouse (Gwyther & Matteson, 1983). The relationship with the Spouse's partner has changed because of the disability. Spouses may feel that they have lost their best friend. The husband or wife may be affected negatively by the relationship with his/her partner once he/she is in the caregiving role. The spouse—caregiver may also be affected by the attitudes and lack of support from other family members. Johnson (1983) found that male caregivers, when compared with female caregivers, had more frequent contact with children, relatives, and friends. In summary, family resentment can develop either from lack of reciprocation in the caregiving role and/or lack of support in providing care to the elderly person, or criticism from other family members regarding care of the chronically ill elderly person. There will be a focus in the study on whether the caregiver perceives if family members are supportive in providing care, or if the family has abandoned him/her in providing care to the elderly person. Again, the affects of sex, socioeconomic status, and relationship of the caregiver to the elderly person will 44 be analyzed in relation to perceptions of impact on family relationships. Summary The concepts - impact on caregiver's schedule, impact on health status, financial concerns, and the affect from family abandonment — have been presented as burdens of caregivinO. Therefore, the perceived burdens of the caregiver will be defined as the way the caregiver believes the experiences of caring for an elderly impaired person are affecting and/or impacting certain aspects of his/her life. In the previous pages the areas that were discussed were: (1) impact on schedule; (2) impact on health status; (3) impact on financial status; and (4) impact from family abandonment. These four areas will be explored in the study. In summary, the concept of caregiver, burdens, and elderly person will be identified. The caregiver of an elderly person may be identified as a woman in her 40's or 50's with a husband and children, or she may be a grandmother. The average age of a spouse caregiver is 66, with more than 30 percent being over age 74 (Day, 1985). The responsibilities of the caregiver involved in providing care for the elderly can be shopping and running errands, transporting the elderly person to a physician's office, arranging appointments, money management of the elderly person's finances, laundry, managing daily the problems of incontinence, both bowel and bladder, managing constipation, feeding, meal planning, bathing, transferring the person 45 from bed to chair or bed to commode chair, and lastly, making decisions regarding symptoms that should be reported to the physician. These tasks can extend over 24 hours and also may include handling aggressive changes in behavior of the elder person. Added to the responsibilities mentioned, the caregiver must manage his/her own household. The elderly person (the recipient of care) may be identified as stated in Beck and Phillip's article, "Abuse of the Elderly” (1983), "frail when because of mental or physical limitations, they no longer can independently meet i all of their daily needs' (p. 97). Feller (1983) states that "the need for the help of another person increases sharply with age, especially among the elderly. Fewer than 1 in 10 who are 65—74 years of age need help, compared with 4 in 10 who are 85 years of age or over” (p. 1). The rate of needing help in at least one basic physical activity (walking, going outside, bathing, dressing, toileting, getting in and out of bed or chair, eating) was higher in the persons in the older age group 65 -74. The rate of needing help more than doubled in the 85+ group. These impaired elderly require social services, nursing care, nutritional aid, and personal aid which are often provided by family members such as adult children or spouses. The purpose of this study is to ascertain if caregivers believe that there is an impact on their schedules, health status, financial status or feelings of family abandonment when they provide care for an elderly impaired person. In Figure 1, the study design for the 46 original research of Given and Given (1985) from which this sample was taken, is presented. From the design, a small model (Figure 2) is presented showing the concepts for this study. In Chapter 2, the concepts of perceived burdens, caregiver, and elderly person have been developed. The review of literature of each concept will be presented in Chapter 3. 47 «cacao... .o‘.o .. ..soa ave-aunt. .‘ .o..‘.o: .u one: oc.osaz .a as.» e..x coo: .- .Io-asn c.0u c..-o: .9 E.:... co....o ..o snow-ac uuu.>¢mm .mmmfl .cm>wo .0 new cm>ao .m up =oEom pm mucofiumm xfluweam mcfimmcmz on mmmcoammm um>fimoumo= Eoum co..¢osso.c. ..co...c.o.‘ gene a....: sung:- c~s.u..fimmumo .aco..u¢a. asapu<¢.ou¢x. 03.».cuccu nu.o:—u utou—ao —8~.—¢so¢u>.ou¢wwmueu omsoamlcoz Ammmmo wcflmmwe NV fi+ooowomal come» mwcmev Asmauzv kmo.m3a cams amzoam Amp» owlmm mwcme memo» o.~o cmflz ANk.mwv kmm mfiaama ANm.SHV om magi :Oflumuswm oeoucH mw< xmm mom ".m.mumo mo acmaaflomx sacmeam mom a m.muo>wweumu memo mo mucmflawumx zanwwfim wee mum>fiwmnmo mo mums muflcmmuwoeewofioom "H.m eHan 118 Ado. v o ANm.o V H oflcmqu: Amm.k v mm mmm.mov mwm cmflmmoseu mmod O\ chwEmE< AAAA 8x" I32 .0 o'\° N N m m vvvv «H mm «OH omfi :wfiUCH :mofiu654 oflceqmfl: xumfim CNHWGUDS QUQM mwsoamicoz omsoam Odessoaasm m>wumfimp nwsuo amaucaimwcafinam amaucaiefiaeo eaflzo uazw< emsoam mesmCOfiumHmm mom u m.mumu mo aceflmfloox sauecam mom u m.mno>flwoumu Acescflucoo H.m mfinmhv 119 Income was elicited according to the relationship of the caregiver to the recipient of care. That is, spouse caregivers reported on the total yearly household income of both spouse and care recipient. Non-spouse caregivers reported on their yearly household income, plus the total yearly income of the care-recipient. In the analyses (which are presented later) on income, spouse caregivers and non—spouse caregivers are analyzed separately. The range of household income for Spouse caregivers and recipients of care (3:159) was from $4,500 per year to $40,000 (actually an assumed mean for the open—ended category of $30,000 and over) per year, with seven failing to respond. The mean income for spouse caregivers was $18,657, and 76.7% reported an income of $12,500 per year or more. Among non—spouse caregivers, the yearly household income of over $30,000 was reported most frequently (48 out of 148 responses). Nine individuals did not respond. The percentage reporting over $12,500 per year was 70.9%. The mean income was $22,866. The care— recipient's income will be reported under the sociodemographic section for the elderly impaired person. 0f the 307 caregivers, 72 (23.4%) were employed, 13 of which were spouse caregivers, and 59 were adult—child or other relative caregivers. (The sociodemographic information is presented in Table 5.1.) 120 Sociodemographics of the Elderly Impaired Person The sex of the care—recipient (elderly impaired person) was evenly distributed in the sample. There were 154 males, and 153 females. The oldest care— recipient was 102 years, the youngest being 63 years of age. The mean age was 78.1 years. Race and ethnic affiliation matched that of the caregivers. In regards to the educational level, 32.2% (3:99) completed some grade school or less, the most frequently reported level. In addition, 50 (16.3%) completed some high school, 51 (16.6%) completed high school, 61 (19.9%) completed some college, 28 (9.1%) completed college, and 15 (4.9%) had a graduate or professional school degree. There were three missing responses. The range of patient income (for the non-spouse recipients of care) was from $1,000 per year to over $30,000 per year, with 14 individuals not responding out of 148. (The sample size was 148 because the care- recipients' income was only reported for non—Spouse caregivers.) The mean income was $10,152. (The sociodemographic information is presented in Table 5.1) In the next section, the functional status of the elderly recipient will be described. Description of Functional Level of Elderly Recipient of Care In the analyses for this study, the functional status of the elderly care recipient will be added as an independent variable because it is expected that functional status of patients will also strongly affect 121 caregivers' perception of impact. Originally it was expected that the functional status would act like a control variable in that it might mediate the relationships between the impact variables and the other independent variables. Later in the analysis it will be Shown that the lack of correlation with the other independent variables preclude the use of functional status as a control variable. In order to describe the functional level of the elderly person, respondents (caregivers) were asked to identify whether the elderly person needed assistance with: (1) activities of daily living or ADL'S (eating, dressing, combing hair or showering, bathing, toileting, getting in and out of bed); (2) instrumental activities of daily living, or IADL'S (Shopping, getting around the house, laundry, cooking, handling money, arranging tranSportation); and (3) patient's mobility (walking, housework, and getting in and out of bed). One of the criteria for inclusion as a study participant was that the recipient of care was dependent in at least two ADL'S and/or IADL'S. In the elderly recipients's dependencies for ADL'S, the highest percentage (p=69, 22.5%) needed assistance with six of the activities. There were no missing responses. The percentage needing assistance with five ADL'S was 17.6% (p = 54). In Table 5.2, the frequencies and percentages of dependencies among ADL'S for the elderly recipient are shown. 122 The instrumental activities of daily living are presented in Table 5.3. The highest percentage (2 = 196, 63.8%) needed assistance in six instrumental activities; while 3.6% (p = 11) did not need assistance in any instrumental activities. Table 5.2: Frequency and Percentage of Dependencies in ADL'S for the Elderly Care Recipients (N=307) Number of Dependencies in Activities of Daily Living Frequency Percentage No dependency 31 10.1 One dependency 43 14.0 Two dependencies 31 10.1 Three dependencies 30 9.8 Four dependencies 49 16.0 Five dependencies 54 17.6 Six dependencies 69 22.5 NOTE: Activities of daily living — eating, dressing, combing hair or shaving, bathing, toileting, bed. 123 Table 5.3: Frequency and Percentage of Dependencies in IADL'S For Elderly Care Recipients(N=3OZ) Number of Dependencies in Instrumental Activities of Daily Living Frequency Percentage No dependencies 11 3.6 1 dependencies 8 2.6 2 dependencies 8 2.6 3 dependencies 9 2.9 4 dependencies 25 8.1 5 dependencies 50 16.3 6 dependencies 196 63.8 NOTE: Instrumental activities of daily living - shopping, housework, laundry, cooking, money, transportation. In the elderly person's dependency for mobility, the highest percentage (3:96, 31.3%) did not need assistance according to the respondents. Seventy-five or 24.4% were dependent in 3 levels of mobility. The frequencies and percentages are presented in Table 5.4 124 Table 5.4: Frequency and Percentage of Dependency in 3 Measurements of Elderly Recipient's Mobility (N=307) Number of Dependencies Frequency Percentage in Mobility No dependency 96 31.3 1 dependency 72 23.5 2 dependencies 64 20.8 3 dependencies 75 24.4 NOTE: Measurements of mobility - walking, getting around house, getting in and out of bed. Perceived impact In order to describe the perceived impact of caring for an impaired elderly person on caregivers' lives, subscales from a 77—item questionnaire (caregiver inventory) on the impact of caregiving were constructed for each dimension. Originally, 111 items were developed by Given and Given (1984) and their research staff. The staff hypothesized which items measured various dimensions. After the items were tested on 99 families caring for an elderly family member in their 125 home, the results were submitted for factor analysis. The number of items were reduced to 77 statements which measured nine dimensions (subscales) of caregiving. Four of the dimensions (schedule, health, finance, and abandonment) were used in this study. The areas of impact were operationalized through the Caregivers' Inventory. Caregivers answered items which had Likert—type reSponses (l - strongly disagree; 2 — disagree; 3 — neither agree or disagree; 4 - agree; and 5 — strongly agree). The alpha coefficients for the subscales ranged from .72 to .88. The means presented in Table 5.5 are as follows: (a) schedule 3.8 (one missing case); (b) health 2.7 (one missing case); (c) finance 2.6 (no missing cases); and (d) abandonment 2.6 (two missing cases). Table 5.5: Means and Standard Deviations Measuring Caregivers Perception of Impact on each Dimension Dimension Mean Standard Deviation Schedule 3.8 .804 Health 2.7 .872 Finance 2.6 .858 Abandonment 2.6 .925 126 A description of the sample of caregivers and elderly persons was presented in the previous section. In the following section the hypothesis for each independent variable with each dimension of impact (schedule, health, finance, and abandonment) will be presented. The data analysis will be performed in various steps depending on the dimension of impact and the variables used. In general, an analysis of variance and multiple regression will be employed to test the hypotheses. The analysis of variance (ANOVA) is appropriate because two of the independent variables are nominal and the dependent variables are interval level data. ANOVA is employed when one desires to test the differences between two or more group means at a time such as the nominal variables of sex and family relationship in this study. Multiple regression is appropriate since the socioeconomic data of the caregiver are measured on an interval scale. Also, in the multiple regression technique, all the data can be utilized (more than one independent variable can be entered into an equation) to help summarize and quantify relationships among the variables (the nominal variable can be changed to a dummy variable). Multiple regression offers a more complete explanation of the dependent variable. The minimal acceptable level of significance for testing the hypotheses in this study was set at .05. 127 The main research question is ”How are selected caregiver characteristics related to perception of burden?”. The first set of hypotheses to be examined are related to caregiver's sex and the affect of sex on perception of impact in each dimension. Analysis of Caregiver Sex for each Dimension Hypothesis I: The female caregiver perceives more impact on schedule than the male caregiver. Hypothesis II: The female caregiver perceives more impact on health than the male caregiver. Hypothesis III: The female caregiver perceives more impact on financial status than the male caregiver. {ypothesis IV: The female caregiver perceives more family abandonment than the male caregiver. One-way analyses of variance (ANOVA) were performed to compare male and female caregivers' perception of impact for each of the dimensions (Hypotheses I, II, III, IV). Hypotheses I, II, and III were rejected. Female means were higher for each dimension, but there was not a significant difference between the perceived impact on schedule means (2 = .165), perceived impact on health means (p; = .111) or perceived impact on finances (p = .612) for the male and female. Hypothesis IV was accepted in that there was a significant difference in group means between male and female caregivers in perception of family abandonment (L = .007). In the next subsection, the significance of the results will be different for Hypotheses II and IV, when there is a 128 Table 5.6: One—way ANOVA comparing Male and Female Caregivers Perceived Impacts from Caregiving Schedule Health Finance Abandonment Male 3.68 2.47 2.49 2.24 Female 3.85 2.69 2.56 2.63 Total group 3.82 2.65 2.55 2.57 F 1.938 2.558 0.258 7.453** 2:.165 £=.111 3:.612 2:.007 N = 307 Scale: 1—5, strongly disagree to strongly agree NOTE: 4 cases missing in each dimension control for the spouse/non—spouse category in the two- way ANOVA. Four cases were missing in each analysis. (See Table 5.6 for results.) In the following subsection, the hypotheses that will be examined are related to the affect that caregiver's family relationship (to the elderly person) has on the perceived impact of the four dimensions of caregiving. 129 Analysis of family relationship Hypothesis V: The spouse caregiver perceives less impact on schedule than the adult child and other relative caregivers (child—in—law, siblings—in-law, and others). Hypothesis VI: The spouse caregiver perceives greater impact on health status than the adult—child or other relative caregiver. Hypothesis VII: The spouse caregiver perceives greater impact on financial status than the adult—child or other relative caregivers (child-in-law, siblings—in-law, and others). Hypothesis VIII: The spouse caregiver perceives more family abandonment than the adult-child or other relative caregivers. Two—way ANOVA was performed for each hypothesis listed above, with sex and family relationship as the independent variables. The adult—child and other relative caregivers were categorized as non—spouse caregivers. The ANOVA for the impact on schedule by family relationship yielded a F—statistic of 5.976 with a probability value under the null hypothesis of no group differences of .015. The highest group mean was for Spouses (3.91, g = 157) with the non-spouse caregivers' mean being (3.72, g = 146) (see Table 5.7). Therefore, the Hypothesis V (schedule) was rejected as stated. There was a significant difference among group means, but the unexpected finding was that there was an indication that spouses perceive more impact on schedule than non—spouses. Hypothesis VI (health) was accepted with a significant difference (p = .001) in group means. The 130 :oflmcmeflw some wcwmmfie mommo psom mmfi u z mmsoamlcoz mHmEmm wHH u z emsoam mamewm HH u z mmsoamlcoz mam: mm H z omsoam mam: "muoz H30. M amnion“ Ho..W m** mo. v my.“ was. u m cos. n a mac. n a saw. u a cofluumumHCH Nam.m n a mac. n a *xmo.m u a sum. u a emzsoze Hos. u a owe. n a coo. u m mac. n s anemcofiumsmu ***NHO.HH n a oes. u e ***wmo.omu e *smm.m u m sfifiame «mo. u a 0mm. u a woo. u a «mo. u ; qmm.m u a Nq.m u a **Nom.n u a nmN.m u a xmm um>flwmtmo Amom ".mv Amom ".mv Amen ".mv Amom ".mv mm.m mm.~ mo.~ Nn.m asouo fiance an.m nm.m mm.m om.~ ms.m «w.N Ne.m Ho.m.aem:0wumamm saneae ca.m mq.m mm.m oo.m qq.m wo.~ mm.m mm.m «seems wm.m oo.~ so.w mq.m No.m mq.m No.m oo.m mam: uxmm um>flwoumu .wqmlcoz mmsoam .mzmlcoz vmsoam .mamlcoz mmsomm .mqmlcoz omsomm ucoacowcms< mocmcflm cuamm: mazwwnum wcw>flwoumu Eouw uuquH wcfiuomww< awszOMHmHmm NHwEmm cam xmm pm>wwuuou how <>oz< xm3lozh cam meme: "m.m maan 131 spouse mean (2.84, p = 157) was the highest in perceived impact on health with the non—spouse caregiver mean being 2.45 (g = 146). Therefore, the results indicate that spouse caregiver perceive more impact on health. There was no significant difference (p = .680) in group means for impact on financial status among spouses (2.56, g = 157), and non-spouse (2.53, p = 146). Hypothesis VII (financial) was rejected. There was a perception of impact but there does not appear to be a significant difference in perceived impact in finances among various family members. For the dimensions of abandonment (Hypothesis VIII), the ANOVA yielded a probability value under the null hypothesis of no-group difference of .001. The hypothesis was rejected as stated since the non—spouse mean (2.77, g = 146) was the highest, compared to the spouse mean of 2.37 (g = 157). There was a perception of impact from abandonment, but the non-spouse caregivers perceive more impact than the spouse caregivers, contrary to the hypothesis. In the analyses for each dimension, four cases were missing. Results are presented in Table 5.7. Other Findings (sex and family relationship) The relationship of family relationship on each dimension of impact was presented as calculated through a two—way ANOVA. Caregiver sex was also included in the two—way ANOVA procedure in order to assess if there is an interaction between caregiver sex and family relationship of the caregiver. 132 As mentioned for perceived impact on schedule and perceived family abandonment, the family relationship was significant (p = .015, spouse mean higher for impact on schedule, and p = .001, non—spouse mean higher for abandonment). Caregiver sex and the two-way interaction of the two variables were not significant for impact on schedule or abandonment. In financial impact, sex and family relationship were not significant and the two-way interaction of the two variables was not significant. {egarding the perceived impact on health, the variables of caregiver sex (p = .008) and family relationship (p = .060) were significant. There also was a significant two—way interaction between the two variables (p = .018). That is, the affect caregiver sex has on the perceived impact on health depends on whether the caregiver is a spouse or non-spouse, or the affect family relationship has on the perceived impact on health depends on whether the caregiver is male or female. There were four missing cases in the analysis. (Results are presented in Table 5.7.) The last set of hypotheses to be examined are related to the socioeconomic status of the caregiver and its affect on the caregiver's perceived impact for each dimension. Analysis of Socioeconomic Variables Hypothesis IX: Caregivers in the higher socioeconomic level (income and education) perceive less impact on schedule than those in the lower socioeconomic level. Hypothesis X: Caregivers in the higher socioeconomic level (income and 133 education) perceive less impact on health status than those in the lower socioeconomic level. Hypothesis XI: Caregivers in the higher socioeconomic level (income and education) perceive less impact on finances than those in the lower socioeconomic level. Hypothesis XII: Caregivers in the higher socioeconomic (income and education) level perceive less family abandonment than those in the lower socioeconomic level. To determine the affects of the socioeconomic status on the impact of caregiving, multiple regression was performed. At this time, the elderly person's functional status (PADL'S, PIADL'S, and PMOBL'S) and caregiver sex, were added to the equation. The purpose is to determine if there are any differences in the affect of the variables on the perceived impact of caregiving even when there is a control for the functional status of the elderly recipient. One measurement, getting in and out of bed, is utilized in both PADL'S and PMOBL'S. Multiple regression analysis was performed on spouse and non-spouse caregivers separately because income was reported according to a different format in the two groups. For non—spouse caregivers, caregiver income and patient income were used instead of spouse income. The other variables utilized were spouse income, caregiver education, and caregiver sex. In the correlation matrix for schedule, there was a relationship among the variables of schedule with caregiver sex (—.148), PADL (.341), PIADL (.281), and 134 PMOBL (.282). There is also an intercorrelation between a spouse income, PADL (-.111), and PMOBL (-.127). The most significant variables for impact on schedule were caregiver sex, PADL, and PIADL (having most influence). The combined influence of these variables accounted for almost 20% variance of the impact on schedule. A summary of the results are in Table 5.8. Table 5.8: Multiple regression for spouse and non-spouse caregivers' perceived impact on schedule utilizing elderly recipient's functional status, caregiver sex, and socioeconomic status Dependent Variable: Schedule Independent Variables Beta Significance Spouse Spouse Income .027 .743 Caregiver Education —023 .781 Caregiver Sex —l74 .022* PADL .227 .033* PIADL .237 .002** PHOBL .095 2.361 R .196 Non—spouse Non-spouse Caregiver Income .048 .600 Patient Income —.044 .629 Caregiver Education .107 .253 Caregiver Sex -.062 .456 PADL .188 .104 PIADL -.036 .669 PMOBL .234 .046* R‘ .147 * g .05 **p_ g .01 ***p g .001 In computing multiple regression for the non-spouse caregivers, there was a correlation among the variable of caregiver educational level (-.119) PADL (.349), PMOBL (.362) and schedule. There was a negligible correlation, (that is below .1) between schedule and 135 each of variables, caregiver income, patient income, and caregiver sex. In the final equation, PMOBL (p = .046) was the only significant variable. Caregiver sex (p = .456), caregiver income (p =.600), patient income (2 .629), caregiver education (p = .253), PADL (p = .104), and PIADL (p = .669) were not significant (results in Table 5.8). Therefore, Hypothesis X, which stated that the caregivers in higher socioeconomic level perceived less impact on schedule than those in the lower socioeconomic level was rejected. This finding indicated that socioeconomic status does not have a relationship to the caregiver's perceived impact on schedule. The multiple regression analysis was computed for impact on health status, again analyzing spouse and non-spouse caregivers separately. Spouse income and education, caregiver sex, PADL'S, PIADL'S, and PMOBL'S for spouse caregivers were analyzed and caregiver income and patient income was substituted for spouse income, when non—spouse caregivers were analyzed. For spouse caregivers there were correlations above the level of .100 for the variables of caregiver sex, Spouse income, PADL, PIADL, and PMOBL with the dependent variable of health. There were also intercorrelations above .100 with the following: caregivers sex and caregiver income (.106); caregiver income and caregiver education (.412); caregiver income and PADL (—.111); and PMOBL and caregiver income (-.128). The only significant relationship was caregivers sex and PIADL (Table 5.9) with the combined influence 136 of all the variables accounting for a 17% variance in impact on health. The results indicate that these two variables, rather than socioeconomic status, may influence the caregiver's perception of impact on spouse caregiver health. For non-spouse, there was a correlation (above .1 between health and each of the following independent variables: caregiver income, patient income, caregiver education, PADL, and PMOBL. There were intercorrelations between caregiver income and caregiver education, PADL and PMOBL, and patient income and caregiver income. The only significant variable was PADL, which with the combined influence of all the variables accounted for 14% variance in perceived impact on caregiver's health. The Hypothesis X stating that caregivers in the higher socioeconomic status perceived less impact on health than those in the lower socioeconomic status was rejected. (Results in Table 5.9.) In analyzing financial impact for both spouse and non-spouse caregivers, the same variables were utilized as in the dimensions of schedule and health. Spouse income was the only significant variable, which with the other variable accounted for a combined influence of a 15% variance for spouse's perceived impact on finances (see Table 5.10). There were correlations (above .100) between the dependent variable finance and each of the following variables: spouse income (-.305), PADL 137 Table 5.9: Multiple regression for spouse and non-spouse caregivers for perceived impact on health - utilizing recipient's functional status, caregivers sex, and socioeconomic status. Dependent Variable: Health Independent Variables Beta Significance Spouse Spouse Income —.037 .653 Caregiver Education -.040 .628 Caregiver Sex —.257 .001*** PADL .088 .410 PIADL .198 .012* PMOBL .168 .112 R .176 2 Non-spouse Caregiver Income .028 .761 Patient Income —.081 .382 Caregiver Education —.141 .121 Caregiver Sex .087 .299 PADL .214 .069 PIADL —.103 .235 PMOBL .097 .410 R2 .148 *p g .05 ***p g .001 (.247), PMOBL (.234), and caregiver education (-.111). There were intercorrelations (above .100) between spouse income and PADL, and spouse income and PHOBL. Hypothesis XI (Financial) was accepted for spouse caregivers in regards to spouse income being significant but was rejected for non-spouse caregivers. For non- spouses, socioeconomic status does not appear to be significantly related to the perceived impact on financial status, although the coefficients were in the expected direction. In the analysis of the dependent variable abandonment, based on socioeconomic status for both 138 Table 5.10: Multiple regression for spouse and non-spouse caregivers for perceived impact on finance utilizing recipient's functional status, caregiver sex, and socioeconomic status. Dependent Variable: Finance Independent Variables beta Significance Spouse Spouse Income —.279 .001*** Caregiver Education .010 .903 Caregiver Sex -.065 .394 PADL .132 .224 PIADL .074 .351 PMOBL .097 2360 R .152 Non—spouse Caregiver Income -.156 .100 Patient Income —.086 .358 Caregiver Education —.152 .119 Caregiver Sex .056 .503 PADL .125 .286 PIADL -.106 .224 PMOBL -.044 2708 R .142 ***g < .001 spouse and non-spouse caregivers, spouse income and caregiver sex were the only significant variables. The variance for the combined influence of all the variables was approximately 8%. There was a negligible correlation of less than .1 between abandonment and each of the functional status variables PADL, PIADL, and PMOBL. The correlation between spouse income and the dependent variable of abandonment was .145. There were intercorrelations (above .100) between spouse income and PADL and spouse income and PMOBL. For non—spouse caregivers, the only correlation above .100 with abandonment was PMOBL. Caregiver income was intercorrelated (above .100) with PADL and PMOBL, but 139 patient income or caregiver education were not intercorrelated with the functional status of the elderly person. Hypothesis XII (Abandonment) was rejected for spouse and non—spouse caregivers as stated. Spouse income was significant, although the effect was opposite from what was expected. Spouses with a higher income level perceive more abandonment than those with lower income. The results are presented in the following table (Table 5.11). Table 5.11 Multiple regression for spouse and non-spouse caregivers in perceived impact from abandonment utilizing elderly recipient's functional status, caregiver sex, and socioeconomic status. Dependent Variable: Abandonment Independent Variables Beta Significance Spouse Income .176 .047* Caregiver Education -.004 .962 Caregiver Sex -.203 .012* PADL .046 .683 PIADL .075 .362 PMOBL .062 2575 R .076 Non—Spouse Caregiver Income .068 .491 Patient Income —.086 .379 Caregiver Education -.005 .958 Caregiver Sex .038 .665 PADL -.135 .277 PIADL —.057 .531 PMOBL .205 2104 R .042 *p < .05 140 Hypothesis XIII Caregivers who receive more assistance from family/friends perceive less family abandonment than those caregivers who receive less assistance from family and friends. An added hypothesis was examined in the dimension of abandonment. The independent variables of frequency of times family helps and the number of relatives who provide help, caregiver sex, family relationship, PADL, PIADL, and PMOBL, were analyzed through multiple regression for the dimension of abandonment. Frequency of help was significant, but number of persons helping, PADL, PIADL, and PHOBL were not significant. Therefore, Hypothesis XIII is accepted. A summary of the results are given in the following table (5.12). Table 5.12: Multiple regression for impact from abandonment utilizing assistance, elderly recipient's functional status, caregiver sex, and family relationship. Dependent Variable: Abandonment Independent Variables Beta Significance Persons helping —,114 .058 Frequency of help —.269 .000*** Caregiver sex -.118 .044* Family relationship —.244 .000*** PADL -.027 .726 PIADL .077 .180 PMOBL .063 2.410 R .163 *p g .05 ***p g .001 N = 267 In the following section, the interpretation of the results will be presented. 141 Interpretation of Results Sociodemographics of the Caregiver Sex and Age Of a sample of 307 caregivers, the majority were females - 257 females and 50 males. These findings are consistent with other researchers such as Archbold (1982), Snyder and Keefe (1985), George and Gwyther (1986), Hawranik (1985), Cantor (1983), and Scott, Roberto, & Hutton (1986). George and Gwyther (1986), as an example, presented the fact that 71% of caregivers in their study were women. In this study, 83.7% were females and 16.3% were males. Actually, there was a higher percentage of women than some other studies, such as Montgomery, Gonyea & Hooymen (1985) with 73.5% females and Chenowith and Spencer (1986) with 77% females. The average age of the caregiver was 61.9 years with 81.8% being over the age of 50. In George and Gwyther's study (1986), the average age was 57, and in Cantor's (1983) study, the average age was 57.5 years. (Spouse, adult child and other relative caregivers were studied by these authors.) Day (1985) states that the majority of offspring caring for a disabled parent are over 50, and the average age of a spouse caring for a disabled person is 66. In this study, the average age of 61.9 years probably reflects the fact that there were more spouse caregivers than adult—child caregivers or 142 other relative caregivers. Thus, the mean age is slightly higher than in other studies. Race, Education, and Income Caucasians dominated the sample (283, 92.2% of H = 307). Only twenty-two caregiver—patient dyads were black (7.2%) and one was Hispanic (.03%). The distribution of Caucasians, blacks, and Hispanics is not typical of the larger population of lower Michigan. Caucasians dominate the population at approximately 80%, whereas the percentage of Blacks is approximately 19% and Hispanic is approximately .07%. The educational level of caregivers was fairly high in that 55.8% (g = 170) of the sample encompassed a group that had either completed some college (34.9%), had completed four years of college (11.1%), or had completed graduate or professional school (9.8%). According to the U.S. National Center for Health Statistic (1986) of those 55 years and over, 11.2% have completed one to three years of college, and 11.7% have completed four years of college. 0f the sample, 23.5% completed high school, 20.8% completed some high school, and 7.2% attended grade school. The percentage completing high school was low according to the U.S. National Center for Health Statistics (1986), in that 34.2% of those 55 years old and over have completed high school; but those in the sample attending college or more was higher than average. These figures compare approximately the same to George and Gwyther's (1986), 143 Zarit, Todd and Zarit's (1986), and Scott's et al. (1986) studies in which caregivers completed a level of 13 years or more of education. Cantor (1983) showed a contrast in that most of the caregivers in her study had graduated from high school or attended school to 12th grade or less (67.5%, H = 111). In regards to income of the caregivers, total yearly household income was separately recorded for the spouse caregivers and non—spouse caregivers (adult child and other relatives). For spouse caregivers, the income levels ranged from $4500 to over $30,000 per year with $17,500 per year the most frequently reported (36 of E = 159) The mean was $18,657, slightly lower than the mean of the caregiver household income of 18,800 (before taxes) for those 65 years and older reported by the U.S. Bureau of Census (1985). There were 76.7% above $12,500/year. For non-spouse caregivers, the most frequently reported yearly income was over $30,000/year (48 of H = 148). The income ranged from $1,000 to over $30,000 for non—spouse and the mean was $22,866. This mean is lower than the household mean income of $28,149 for the Midwest reported by the U.S. Bureau of Census (1985). In comparing results of studies, the finding is in agreement with George & Gwyther (1986), who reported that household income of spouse-caregivers' is usually lower than the household income of adult—child caregivers'. The income levels (for this study) are 144 slightly higher than those reported by Zarit et al. (1986), Scott et al. (1986), Chenoweth and Spencer (1986), and Montgomery et al. (1985), in which the caregiver income levels were from $4,800 to $30,000 per year. The financial levels of caregivers are difficult to compare from one study to another because of: (1) the inflation rate since the time of data collection for other studies; (2) the inconsistent mixture of caregiver relationships from one study to another (some have more spouse caregivers and/or adult—child caregivers); and (3) difference in reporting of income from one study to another. The mean income of the care-recipient of the non- spouse caregiver was $10,152.00, which is slightly lower than the mean income of $10,622, reported by the U.S. Bureau of Census (1985), per individual 65 years and over before taxes. (The care—recipient of spouse caregiver was included in spouse-caregiver's total yearly income.) It is difficult to compare with other studies, since income of the elderly impaired individual is rarely mentioned. According to Exter (1987), the median income of those 65-74 is $15,400 and among those 75 years and over, the median income is $10,500. The income level in this study, at least of the impaired elderly receiving care from non-Spouse caregivers is congruent with Exter's findings. In general, the reSpondents in this sample tend to be white and well educated, as has been reported in many ..', 145 other studies (Fitting, Robins, Lucas, and Eastham, 1986; Worcester and Quayhagen, 1983; Zarit et al., 1986; Johnson and Catalano, 1983; George and Gwyther, 1986). The reason may be that the questionnaires are lengthy. The more educated individual may be less intimidated by the complexity of the study, and he/she may have a better understanding of the purpose for research. Also, the white population may use community services more, such as the Visiting Nurse and Home Health Agencies, where recruitment was most often initiated. McAuley and Arling (1984) state that "people with greater education and more social resources receive more services" (p.62). They also report that education (which may mean a higher socioeconomic status) is probably indicative of knowledge about services, and thus influences individuals acceptance and ability to obtain formal care. Relationship of Caregiver to Elderly Person The majority of the respondents were spouse caregivers (51.8% or g = 159). Adult—child caregivers comprised 33.9% g = 104), and the other 14.4% consisted of child—in—law caregivers (g = 23 or 7.5%), other relative caregivers (g = 14 or 4.6%), and siblings-in- law caregivers (3': 7 or 2.3%). Spouses and adult children are typically the caregivers in many studies. According to George (1984) and Day (1985), the elderly receive personal care first from the spouse (if living), then from a daughter if the elderly person is a widow or 146 widower. In Johnson's (1983) study, the support given to post-hospitalized individual ages 65 years and older was provided by spouses. Among 167 families, 45% identified the spouses as a primary caregiver, and 39% identified the child. Johnson & Catalano (1983)(N = 167) also found that 62% were spouses and 27% were children in their study. This study is congruent with other studies, in which spouses comprise more of the caregivers than do adult children (Snyder & Keefe, 1985; Scott, Roberto, & Hutton, 1986; and George & Gwyther, 1986). For this study, there was a self-selection process. The participants were selected because they met the criteria of being a caregiver and other criteria for the study. Sociodemographics of the Elderly Recipient There was an even distribution of males and females as recipients of care in the sample (male 3 = 154, females 3 =153). This distribution of male and female is not congruent with Johnson and Catalano (1983), Cantor (1983), and Archbold (1982), who presented samples in which most recipients of care were women. It is congruent with Snyder and Keefe (1985) who found an even split of males and females (H = 61, F = 56). Generally, women live longer than men, but the distribution of female to male can depend on criteria used for study. The factors that led to an even 147 distribution between males and females in this study are unknown. The mean age of the elderly impaired person was 78.1 years (63 years to 102 years). One of the criteria for the study was that the elderly recipient be 65 years or older. The mean age is congruent with the studies in which the impact of caregiving on both spouse caregivers and non-spouse caregivers is examined. For example, Johnson (1983) documented a mean age of 74.5 years, Worcester and Quayhagen (1983) a mean age of 77 years, and Pratt, Schmall, Wright, & Cleland (1985) a mean age of 75.3 years. Any differences in distribution of age in a sample will be evident depending on the age limits and/or criteria for the study. The educational level is not addressed in most studies. There seems to be a rather even distribution between those who just attended grade school and some high school and those who completed high school and higher levels of education (32.2% completed some grade school; 16.3% completed some high school; 16.6% completed high school; 19.9% completed some college; 9.1% completed college; 4.9% have a graduate school or professional degree). According to the U.S. National Center for Educational Statistics, less than half (30.8%) of the current older population completed high school, 48.8% completed less than high school, 10.5% attended 1-3 years of college, and 9.9% completed four years of college. In this sample population, the 148 percentage of high school graduates appears low for the general population, but the percentage for post—high school education appears high. Functional Level of the Elderly Person The functional status and/or dependency level of the elderly recipient of care is difficult to compare among studies. There are various measures utilized for functional status such as: (1) supervision needed; (2) management of incontinence; (3) diagnosis of the elderly person; (4) activities of daily living status; and (5) cognitive or behavioral status of the elderly person. The Activities of Daily Living, the Instrumental Activities of Daily Living, and three measures for mobility status were utilized in this study. The highest percentage (3 = 69, 22.5%) of the 307 elderly recipients needed assistance with six of the activities of daily living (eating, dressing, combing or shaving, bathing, toileting, and getting in and out of bed). The next highest was 17.6% (g = 54) needing assistance with five ADL'S, and the third highest was 16.0% for assistance with four ADL's (g = 49). In all 56.1% needed assistance with four or more ADL'S. In the instrumental activities of daily living 63.8% (g = 196) needed assistance with six IADL's (shopping, housework, laundry, cooking, money, and transportation). In mobility 31.3% of patients (3 = 96) do not need assistance with any of the measured dependencies (walking, getting around the house, and getting in and 149 out of bed. Seventy-five (24.4%) of patients were dependent in three of the mobility activities, whereas 64 (20.8%0 needed assistance with two mobility measurements. A total of 67.7% who needed assistance with mobility. The studies such as George and Gwyther (1986), Sirshal (1985), Hawranik (1985), and Paulshock, Gary, and Deimling (1984) differ in measurements of impairment, and do not agree as to whether functional impairments affect the perception of impact from caregiving. The functional measures were used as independent variables for inclusion in this study in the final analyses. Recipients of care in this study had to be dependent in two areas of either activities of daily living or instrumental activities of daily living. Perception of Impact (Schedule, Health, Finance, and Abandonment) The sample means for perception of impact for each dimension are as follows: (a) schedule 3.8 (S.D. .804); (b) health 2.7 (S.D. .872); (c) finance 2.6 (S.D. .858); and (d) abandonment 2.6 (S.D. .925). The sample mean for the dimension of schedule is the highest of the four dimensions, possibly suggesting that the caregiver experiences the most impact in this area. The health mean is second highest mean, with finance and abandonment having the same and lowest means. Comparing these data with other research findings is impractical because similar measures were not used. In some research, the dimensions were studied in a global sense, such as Zarit's Burden Scale (1980), 150 Robinson's (1983) Caregiver's Strain Index on confinement, emotional, physical and financial areas, and Montgomery's et al. (1985) inventory for objective burden. Cantor (1983) documented perception of health using emotional and physical strain with a response of no impact to great deal of impact (scale 0—2). The mean for the entire sample (N = 111) was 1.56 for emotional strain and 1.41 for physical strain. The results show that there is some impact on health as in this study, but results cannot be compared because of different measurements. In Cantor's study, the scale of no impact to a great deal of impact (0—2) was the measurement for financial impact. This author presented the fact that financial impact scored the lowest (.91) for the group, as is true in this study. The results of this study and Cantor's study could indicate that finances are of less concern than the other dimensions of impact, or respondents are reluctant to admit that caregiving to a loved-one is having an impact on their financial status. In thinking of the caregiver's perception of family abandonment, the standard deviation (.925) for this dimension (subscale) was the largest compared to the three other dimensions. This represents a higher variability in the scores. Scott, Roberto and Hutton (1986) measured family support, but the perception of family support was not addressed, thus, the results in from this study cannot be compared to Scott's et al. (1986). 151 In summary, the majority of the 307 caregivers were females (83.7%). The average age of the caregivers was 61.9 years, which probably reflects that the there were more spouse caregivers (51.8%) than adult—child caregivers (33.9%). The caregivers mean age was slightly higher than other studies, such as Cantor (1983) and George and Gwyther (1986). Spouses and adult— children are typically the caregiver, as shown in other studies. According to Day (1985), the elderly receive personal care first from a spouse (if living), then from a daughter, if the elderly person is a widow or widower. The distribution of race for the caregiver-patient dyad was Caucasians, 92.2%; blacks, 7.2%; and Hispanics 0.3%. The distribution of Caucasian, blacks, and Hispanics is not typical of lower Michigan where Caucasians dominate the p0pulation at approximately 80%. The percentage of Blacks in lower Michigan is approximately 19% and Hispanics approximately .07%. The respondents appear to be well—educated in that 55.8% encompassed a group that had either completed some college, had completed four years of college, or had completed graduate or professional school. This has been shown in other studies such as George and Gwyther, 1986, and Zarit et al., 1986. more educated individuals may be less intimidated by the complexity of the study. There was an even distribution of male and female recipients of care (males P = 154, females N = 153). Most recipients of care tend to be female because women 152 tend to live longer than men, so the distribution was an unexpected finding. The mean age of the elderly person was 78.1 years, which is congruent with other studies. In regards to functional status of the elderly person, the dependency level is difficult to compare with other studies of differences in measurements employed by researchers. 0f the 307 elderly recipients, 56.1% needed assistance with four or more ADL'S (eating, dressing, combing or shaving, bathing, toileting, and getting in and out of bed). In the instrumental activities of daily living (shopping, housework, laundry, cooking, money and transportation), 63.0% needed assistance with six. Seventy—five elderly were dependent in three mobility activities (walking, getting around the house, and getting in and out of bed), whereas 64 needed assistance with two mobility measurements. Studies are contradictory in whether impairment of the elderly person affect perception of impact from caregiving. In looking at the means for the perception of impact for each dimension, schedule had the highest mean (3.8), with the health mean being the second highest (2.7). Finance and abandonment were the same with a mean of 2.6. Comparing these means with other studies is impractical because similar measures were not used. Interpretation of Hypotheses In the next subsection, the interpretation of the hypotheses will be discussed. Each hypothesis will be 153 presented for each caregiver characteristic, a statement will be given as to its acceptance or rejection, then an interpretation will be given. The functional status of the elderly person was not entered into analysis initially but was added in later analyses. A summary of the hypotheses is presented in Table 5.13. Caregiver sex Hypothesis I: The female caregiver perceives more impact on her schedule than the male caregiver. The hypothesis was rejected on the basis of an analysis of variance (E = 1.938, p = .165). In looking at mean differences between male and female caregivers, the female perceives more impact on schedule than the male caregiver, but the results were not statistically significant. The results are tentatively congruent with Robinson (1983), Pratt, Schmall, Scott, Wright and Cleland (1985), who used global burden scales and did not analyze the dimension of impact on schedule. Zarit, Todd, & Zarit (1986) initially reported that there was more caregiver burden (Caregiver Burden Scale) by wives than husbands, but after a two year follow—up there were no significant differences between sexes. Johnson (1983) also reported that less caregiving strain was reported by husbands than wives. The results are mixed. There were no studies specific for impact on schedule by sex differentiation. In this study, the sample consisted mostly of women, so 154 the comparison between sexes might not have been statistically practical. Also, the items might not have properly tapped a male's perspective of impact on schedule. There was no control for length of time of caregiving, which could have an effect on respondents' answers. For example those providing care for a long period of time may perceive less impact on schedule than those who have provided care for a shorter period of time. The longer term caregivers may have become accustomed to the schedule of caregiving. Hypothesis II: The female caregiver perceives more impact on health status than the male caregiver. The hypothesis was accepted as computed by a two- way analysis of variance (F = 7.202, p = .008). (In the one—way ANOVA, the hypothesis was rejected, but the results of the two-way ANOVA was preferred.) Also in later analysis, the hypothesis was confirmed by the multiple regression procedure. The direction of the mean difference was that females perceive more impact on health than male caregivers when the spouse/non—spouse category is controlled. The acceptance is in agreement with Fitting et al. (1986) who found that female spouse caregivers reported more depressive symptoms than husbands, using a one-way analysis of variance (Minnesota Hultiphase Personality Inventory). As mentioned in Hypothesis I, Zarit et a1. (1986) reported 155 more caregiver strain for wives than husbands (Caregivers Burden Scale), but after two years there was no significant difference in strain between sexes. There is a possibility that the men, who are living and are caregivers, are healthy. Once again the measurements and methods were not the same. The items in this study require Likert—type responses to questions about general physical health, not specific symptoms. Regarding physical or mental symtomatology, the items may have been too general to tap the differences in health status between male and female caregivers. Hypothesis III: The female caregiver perceives more impact on financial status than the male caregiver. The hypothesis was rejected since the results from the ANOVA were not significant (F = 0.258, p = .612). (The female mean was higher than the male mean, but was not significant.) No studies were found that documented the perception of financial impact according to the caregiver's sex. Zarit et a1 (1986) and Fitting et al (1986) reported that wives perceive higher burden than husbands, but an unidimensional scale (financial items included) was utilized. Male and female caregivers may have similar financial concerns, such as Spouse caregivers, male or female, have one household income. An adult-child may be able to utilize the elderly person's income, thus, no differences in perception of financial impact. 156 Hypothesis IV: The female caregiver perceives more family abandonment than the male caregiver. The hypothesis was accepted (F = 7.453, p = .007). In the two-way ANOVA, there was not a significant impact for the female when there was a control for the spouse/non-spouse category. (The female spouse mean was higher than the male spouse, but not significantly.) Later in the analysis, through multiple regression, the female spouse caregiver was shown to perceive a significant impact from family abandonment. Therefore, Hypothesis IV will be accepted. The impact of family abandonment for caregivers was not documented in much detail and the impact according to caregiver characteristics was not addressed. One reason for perceived differences is that women are expected to be a "caregiver” if needed. It is not an eXpected role for males. Therefore, a male may receive more assistance from others, so perceive less abandonment (Johnson, 1983). Women may feel abandoned because of society's expectation that a women traditionally assumes a caregiving role. Once she becomes a caregiver, she receives less family or friend assistance than possibly a male. For the adult—daughter, the extra responsibility of taking care of a parent, along with the responsibilities of child—rearing, taking care of a household, and possibly being employed, leads to 157 feelings of lack of assistance in order to complete all of her tasks. Also, daughters tend to help with more 'hands on' assistance for the elderly person, such as personal care, meal planning, and treatments than male sons (Horowitz, 1985). The older woman may resent becoming a caregiver to a husband because she was looking forward to personal opportunities and growth, plus she is living alone with her husband, so feels abandoned. An older women may not be accustomed to making decisions about household problems, financial problems, so feels frustrated and alone (feels there is no one to help) when she now has all the responsibility. More multiple demands appear to be placed on women than men. In continuing with the domain of abandonment, frequency of help, number of persons assisting the caregiver, family relationship, and caregiver sex were analyzed using multiple regression. Frequency of help (.000), family relationship (.000), and caregiver sex (.044) were statistically significant. This finding helps support the calculation through the ANOVA procedure that males perceive less abandonment than females. The functional status of the elderly recipient of care was minimally correlated (less than .1) with abandonment and was not significant. Therefore, the results indicate that frequency of help may influence the perception of abandonment, but with the variance just being approximately 16%, there are other 158 explanations for impact from abandonment that were not analyzed in this study. Family relationship Hypothesis V: The spouse caregiver perceives less impact on schedule than the adult— child caregiver and other relative caregivers (child—in—law, siblings- in-law, and others). “he hypothesis is rejected as stated. There was a significant difference in means (F = 5.976, p = .015), but the unexpected finding was that the spouse mean (M = 3.91) was higher than the non-spouse mean (H = 3.72). This finding is not congruent with Johnson (1983) who documented that social activities were curtailed more for adult—children and other caregivers rather than spouses. Once again, the measurements and methods were different in Johnson's study. Cantor's (1983) results contradicted Johnson's (1983) in that spouses reported more severe impact on specific areas such as time to do things like hobbies, , and time to socialize with friends, than adult—children reported. George & Gwyther (1986) reported that the means for spouse and adult- child caregivers on a satisfaction with social activity scale (an objective assessment) were the same for spouse and adult—child caregivers, and higher (more satisfied with activities) for other relatives. Results are contradictory, so comparison is difficult. Methods and measurements are different in each study. In the measurement of impact on schedule 159 for this study, the items dealt more with perception of interruption of daily activities, and less time for relaxation, rather than actual activities in which a caregiver might wish to participate. Other variables that could affect perception of impact on schedule are the actual amount of involvement of caregiving, and the actual activities in which the caregiver was involved before the debilitation of the elderly person. In hypothesizing that the adult—child perceives more impact on schedule than the spouse caregiver, employment was considered to be a factor for impacting on one's schedule. Multiple regression, using the variables of caregiver employment, caregiver sex, and functional status of the elderly recipient, was performed. Employment (Beta .011, p = .843) was not significant, so possibly does not have an influence on perception of impact on schedule. An adult—child may perceive less impact on schedule because he/she may have more assistance (in staying with the impaired relative, so caregiver can socialize) from their spouse or children. The length of time of caregiving could have an affect on the results. That is an individual caring for someone for a Short period of time might perceive an impact on schedule more so than when care becomes more of a routine. In this study, the elderly recipient of care shows more dependencies in PADL'S and PMOBL'S for the spouse caregivers, than the non—spouse caregivers, therefore, the spouses probably have more involvement in 160 care. The findings in this study suggest that spouse caregivers perceive more impact on schedule than non- spouse caregivers. Hypothesis VI: The spouse caregiver perceives greater impact on health Status than the adult-child or other relative caregivers (child-in-law, siblings- in—law, others). The hypothesis was accepted. A two-way analysis of variance was computed for a Significance level of .001 (F = 20.938) so there was a Significant difference in groups. The spouse mean (2.84) was higher than the non— spouse mean (2.45). The inference is that spouse caregivers perceive more impact on health status than non-spouse caregivers. This is expected since spouse caregivers are generally older, and thus, have more physical problems than the adult-child or others who are generally younger. Multiple regression was performed utilizing the variables of caregiver age, patient age, PIADL, PMOBL, and PADL with the result that caregiver age was significant (Beta = .118, p = .031) for impact on health. Other research findings have agreed with the results in this study (Johnson & Catalano, 1983; George and Gwyther, 1986; Cantor, 1983). Measurements do differ in these studies in that respondents were asked to relate more objective findings, such as: (a) number of physician visits; (b) use of drugs; (c) impact of emotional and/or physical strain (0—2 no impact to great 161 deal of impact); and (d) listing psychiatric symptoms. Perception of health status was usually not addressed. Hypothesis VII: The spouse caregiver perceives greater impact on financial status than the adult—child or other relative caregivers (child-in—law, siblings- in-law, others. The hypothesis was rejected. There was no significant difference between spouse and non—spouse caregivers (E = .170, p = .680). The results from studies are contradictory. Cantor (1983) documents that spouse caregivers reported a greater degree of financial strain than adult-child or other caregiver; but George and Gwyther (1986) were similar to this analysis that differences in perceived impact of economic status among spouse caregiver, adult—child caregivers, and other relative caregivers were not significant. In the sample for this study, finances might not be as pervasive an issue as other strains involved in caregiving, such as physical and mental strain, or impact on schedule because in general the respondents tended to be well educated and of a fairly adequate economic level. Hypothesis VIII The spouse caregiver perceives more family abandonment than the non- spouse caregiver. The hypothesis was rejected as stated. There was a significant difference in means (p = .001) but the means were in a different direction than anticipated. The non-spouse mean (2.77) was higher than the spouse mean (2.37). Also, from the multiple 162 regression analysis, there is an indication that non— spouses perceive abandonment either more or differently than spouse caregivers (family relationship Beta = - .244, p = .000). Family relationship was coded as a dichotomus variable (1 = spouse, 0 = else). The unexpected is that non—spouse caregivers perceive more feelings of abandonment than spouse caregivers. The finding tends to be in disagreement with Johnson (1983) who found that in comparing with adult-child caregivers, spouse caregivers "provided the highest overall support with minimum help from other family members or providers" (p.380) The measurements were different in that more objective data were gathered in Johnson's study rather than perception of abandonment, as in this study. Worcester and Quayhagen (1983) documented that there was a positive relationship between caregiver's age and caregiver's satisfaction. They hypothesized that older caregivers may be more comfortable in the caring role than younger caregivers. If this is true, younger caregivers (usually adult children) may perceive more family abandonment than older caregivers (usually spouses) because the role is not expected, they have other family obligations, and they are not as comfortable in the caregiving role. Another factor that may influence differences in groups is that caregivers are sometimes reluctant (or feel guilty) about answering questions that family members are not supportive. Reasons tend to be given by 163 caregiver participants why individual family members are not supportive. Spouse caregivers may be more reluctant to answer questions that children are abandoning them, than non—spouse caregivers are about siblings or others assistance with a parent. The adult children in this study are mainly female (n = 94 from 101). Therefore, it can be interpreted that female adult—children perceive more family abandonment than spouse caregivers. The adult—child has competing demands such as child rearing, household responsibilities, job responsibilities (approximately 59 were employed), and she did not expect the caregiving role. Other findings regarding sex and family relationship variables A two-way ANOVA analyses were performed for each dimension of perceived impact in comparing male and female as well as spouse and non—Spouse caregivers. The only dimension in which there was an interaction between the two variables was impact on health. This can be interpreted that when the spouse/non-spouse category is controlled, sex of the caregiver does make a difference on the perception of impact on health. In this analysis the female spouse caregiver had the highest mean (2.98, g = 118). For the non-spouses, the male mean was higher (2.62, g = 11) than the female mean and the interaction was significant. (There were too few non-Spouse males for the perceived impact on non-spouse males to be considered valid statistically.) Therefore, the affect sex has on the impact on health depends on whether the 164 caregiver is a spouse or non-spouse. The inference is that female spouse caregivers are probably more at risk for health problems than other female caregivers of a different family relationship. Also, the male Spouse caregivers in the study may be healthier than the female spouse caregivers. The findings are congruent with Fitting et a1. (1986) and Zarit et al. (1986) who studied the differences between male and female Spouse caregivers. For impact on schedule, the results from the two- way ANOVA could suggest that family relationship (p = .015) has more affect in that domain than the sex of a caregiver. Johnson (1983) and Zarit et al. (1986) found that husbands eXperience less strain than wives as caregivers. Perception of financial impact may not be as much of a concern as other issues of caregiving, since there were no significant differences in both the one-way and two—way ANOVAS. The female spouse mean was higher (2.60, g = 118) than the male spouse mean (2.45, g = 39), but not significantly. The mean was higher for the non-spouse male (2.64, g = 11) compared to the non— ll spouse female (2.52, 2 135). There were only 11 non— spouse males, but they possibly Spend more for services to care for the elderly person. The inference (even though there is no Significant difference) is that female spouses and male non-spouses perceive more 165 financial impact than male spouses and female non—spouse caregivers. In regards to perception of abandonment, family relationship was significant (non-spouse had a higher mean, 2.77, g = 146, than spouse caregivers, 2.37, g_= 157). There does not appear to be a relationship or interaction between sex and family relationship. Family relationship may have an affect on perception of abandonment, but whether the relative is male or female does not make a difference. (The female spouse mean was higher, but not significantly in the two-way ANOVA). Few studies were found on perception of abandonment and the statistical analysis of the interaction of sex (Hui family Imitationehign are not €NHTFGSSGO. .hfllnson (1983) documents that male spouse caregivers have more frequent contact with children and other relatives and use more formal providers than female spouse caregivers (chi-square). Snyder and Keefe (1985) concurred that male caregivers utilized more formal services than female caregivers. The findings in this study indicate that male spouses perceive less abandonment, but since there were so few non—spouse males, it cannot be shown that all male caregivers perceive less abandonment. Therefore, there is a slight inference that there is a perception of less abandonment among male caregivers than female caregivers. Females are expected in our society to act in the caregiving role more so than men. 166 Socioeconomic status In the next group of hypotheses, multiple regression analyses were performed on spouse and non- spouse caregivers separately because of the separate recording of income for both groups. Caregivers sex and family relationship were added to the equation along with functional status of the elderly person (PADL, PIADL, and PMOBL) to determine if there was a relationship between the functional level of the elderly person and the affect of the caregiver characteristics on the impact of caregiving. Hypothesis IX: Caregivers in the higher socioeconomic level (income and education) perceive less impact on schedule than those in the lower socioeconomic level. The hypothesis was rejected for both Spouse and non- spouse caregivers in that the variables of spouse income, spouse educational level, non-Spouse caregivers' income, and patient income were not Significant in the multiple regression analysis. The rejection of this hypothesis tends to disagree with Archbold (1982) who found that caregivers with lower income ($7,0000 — $9,999) had to adhere to a rigid schedule (20% of 15 caregivers were employed), whereas those in a higher income level ($15,000 — $19,999) used more community resources and services. Using community resources and services may increase the perception of intpact on schedule because a family member has to 167 arrange and coordinate the services. The findings in this study could reflect the fact that the sample population was fairly well-educated and reported fairly adequate incomes so there is not a sufficient comparison between those with marginal incomes and those with higher incomes. Also, the difference in socioeconomic levels may have no affect on caregiver's perception of impact on schedule, in that items (in the study) regarding the domain of schedule are not focused on any financial concerns. In regards to the elderly person's functional status, there were negative correlations between spouse income and PADL'S (-.111) and PMOBL'S (—.127) and caregiver income (non—spouse) and PADL'S (-.203) and PMOBL'S (-.189). The functional status was significant in both groups of caregivers. Therefore, the functional level of the elderly person can be a factor in the perception of impact on the caregiver's schedule, regardless of the socioeconomic level. Paulshock et al. (1984) found that ADL impairment of the elderly person was highly correlated with caregiver's social activity restrictions (r = .45). Hypothesis X: Caregivers in the higher socioeconomic level (income and education) perceive less impact on health status than those in the lower socioeconomic level. The hypothesis was rejected through the multiple regression procedure. In analyzing Spouse caregivers, 168 the Spouse income, spouse educational level (indicators of socioeconomic status) were not significant. Non- Spouse caregiver income, patient income, and non-spouse educational level were not significant when the non— spouse caregivers were analyzed. The directions of the Beta coefficients for the variables of spouse income, spouse education, non—Spouse education, and patient income were negative. There is an inference that caregivers in the higher socioeconomic level perceive less impact on their health status. There were no studies with which to compare results. An indication from the inference is that those in the higher socioeconomic level may have the resources to utilize more health care or preventive health measures, than those in the lower socioeconomic level. Interestingly, The elderly person's PIADL'S, when analyzing the spouse caregiver, was the only significant functional level variable in the dimension of health. In the non-spouse caregivers, none of the functional variables of the patient (elderly person) were significant. The PIADL is not a good measure for this sub-sample because of the lack of variability (g = 196, or 63.8% patients had dependencies in six PIADL'S). From the results (no statistical significance) in these analyses, the socioeconomic level and the functional level of the elderly person does not have affect on the perception of impact on health status. The findings regarding the elderly person's functional 169 level agree with Hawranik (1985) and Fitting et al. (1986), but disagree with Snyder and Keefe (1985) and Sushil (1985) who indicated that the impairment and illness of the elderly person has an effect on the likelihood of caregiver reporting health problems. Other factors for this sample might have influenced the results, such as the caregivers actual health status, other measurements of functional level, and length of time of caregiving. Hypothesis XI: Caregivers in the higher socioeconomic level (income and education) perceive less impact on finances than those in the lower socioeconomic level. The hypothesis was partly accepted for spouse caregivers (p = .001) but was rejected for non-spouse caregivers through the multiple regression analysis. Spouse income was significant, but Spouse education was not significant. The finding tends to be congruent with Cantor (1983) who documented that spouses reported a greater degree of financial strain than adult-child caregivers or other relative caregivers, but Cantor's measurements were not the same as in this study. George and Gwyther (1986) found that spouse caregivers reported a significantly lower income than adult—child caregivers, but they did not address if caregivers perceived that they had adequate income in regards to providing care. Again, there is an inference that non- spouse caregivers in the lower socioeconomic level 170 perceive more impact on financial status (negative Beta coefficients for non-Spouse caregiver income, education, and patient income) than the non-spouse caregivers in the higher socioeconomic level. According to the two— way ANOVA procedure, there is little difference in the perception of financial impact between spouse and non- spouse caregivers. The functional level of the elderly person was not significant in the financial dimension, even though there was a correlation between: (1) finance (dependent variable) and PADL (.247) and PMOBL (.234); (2) spouse income and PADL (-.112) and PMOBL (-.129); (3) finance (non-spouse) and PADL (.141); and (4) non-spouse caregiver and PADL (-.203). Therefore, functional status of the elderly recipient of care may not influence the caregiver's perceived impact on finances (regardless of socioeconomic status), even though more impairment for the recipient of care may result in increased spending for supplies and equipment. The lack of significance of the elderly person's functional status in regards to financial impact may be a reflection that the sample for this study is generally well-educated and has some economic resources. In the situation of adult children, the elderly person's income may be utilized for supplies, equipment, and other medical needs. Hypothesis XII: Caregiver in the higher socioeconomic (income and education) level perceive less abandonment than those in the lower socioeconomic level. 171 Through multiple regression analysis, the hypothesis was partly rejected for spouse caregivers, (spouse income p = .047) as stated. It was entirely rejected for non-spouse caregivers. The unexpected direction was that the higher the spouse income, there was more perceived abandonment. The caregiver educational level was not significant for either group. There were negative Beta coefficients for caregiver education and patient income (non—spouse) even though spouse and non-spouse incomes were positive in direction. The researcher does not have an explanation for the different inferences. There are no studies with which to compare. Worcester and Quayhagen (1983) reported from their study that lower income persons show slightly more satisfaction with the caregiving situation than higher income persons. Once again, that is a global rating and the study did not address the dimension of abandonment. The fact that spouse income is a significant variable may suggest that socioeconomic level does have some impact in perception of abandonment. The eXplained variance in the dependent variable (abandonment) resulting from the combined influence of spouse income and other variables (R2 = .076) is so small that other factors must cause differences in perceived abandonment (true by definition unless R2 = 1.0). In the area of abandonment, it was hypothesized that caregivers who receive more assistance would 172 perceive less abandonment. The hypothesis was made in order to give some explanation to the dimension of abandonment. Frequency of help was Significant in that the less times persons assisted, there was more perceived impact from abandonment. These findings help explain some effects on the particular domain, but still doesn't answer all the influences on caregivers who perceive abandonment. In the same multiple regression equation, caregivers sex (female) was significant and family relationship (non—spouse) was significant, thus, the results were the same as the one—way and two-way ANOVA, even with other variables added. The functional status of the elderly person was not significant in the dimension of perceived abandonment for either the spouse or non-spouse caregivers. Scott et al. (1986) found evidence of family support in a study of caregivers of Alzheimer's patients (though the sample was small (N = 23). Possibly caring for a more disabled elderly person brings a family closer together; or the degree of impairment of the elderly person makes no difference in perception of abandonment. Other findings As can be noted from Tables 5.8, 5.9, 5.10, and 5.11, caregivers sex was added to the multiple regressions equations. In the schedule, health and abandonment domains, the variable of caregiver sex was Significant for spouse caregiver. The schedule area was the only dimension that the statistical significance of 173 sex changed when functional status was added to the analysis. This can lead to the assumption that functional status of the elderly person does not affect the difference in perception of impact on health or abandonment by sex, but the functional status may have some influence on how a male or female spouse caregiver perceives impact on schedule. Summary A summary (refer to Table 5.13) of the findings are as follows: 1. The hypotheses that female caregivers perceive more impact on the dimensions of schedule, and finances were rejected. 2. The hypotheses that the female caregiver perceives more impact on health and from family abandonment were accepted. 3. The inferences are that female spouse-caregivers perceive more impact on schedule, health, and feelings of family abandonment than the male spouse caregivers. There was no significant difference between male and female spouse caregivers in the perception of impact on financial status. 4. There was no significant difference between male and female non-spouse caregivers in all of the dimensions (schedule, health, finance, and abandonment). The male sample was probably too small for a legitimate analysis. 10. 174 The hypothesis of the adult—child and other relatives perceiving more impact on schedule than the spouse caregivers was rejected (spouses were significantly higher). The hypothesis that the spouse caregiver perceives more impact on health status than the non—spouse caregiver was accepted. The hypothesis that the spouse caregiver perceives more impact on financial status than the non—spouse caregivers was rejected. The hypothesis that the spouse caregiver perceives more family abandonment than the non—spouse caregiver was rejected. (The non—Spouse was significantly higher.) The hypotheses that caregivers in the higher socioeconomic level perceive less impact on schedule and health was rejected for both spouse caregivers and non-spouse caregivers. In the dimension of finance, the hypothesis was accepted for spouse caregivers, but was rejected for non-spouse caregivers. In the abandonment domain, the unexpected inference is that those in higher socioeconomic status perceive more abandonment. Caregivers who receive more family/friend assistance may perceive less family abandonment than those with less assistance from family/friends. 175 11. In regards to functional status of the elderly person: a. Through multiple regression, the PADL'S and PIADL'S were statistically significant in the schedule dimension. Therefore, functional status may have an affect on the perception of schedule impact for male or female caregivers. b. In performing multiple regression, PADL, PIADL, or PMOBL were not significant in the dimensions of finance or abandonment for spouse and non—spouses. PIADL'S were significant for health. Caregiver sex (spouse) was Significant, but the functional status variables do not appear to explain the differences in perception of impact by sex. In Chapter VI, the recommendations and conclusions from the study will be presented. Implications for nursing practice, nursing education and further research will be discussed, along with Orem's theory in nursing. 176 Table 5.13: Hypotheses Acceptance or Rejection, and Significance Accepted Hypotheses Rejected Significance I. The female caregiver perceives more - P = .165 impact on her schedule than the male caregiver. II. The female caregiver perceives more + "*P = .008 impact on health than the male caregiver. III. The female caregiver perceives more — P = .612 impact on financial status than the male caregiver. IV. The female caregiver perceives more + **P = .007 family abandonment than the male caregiver. V. The spouse—caregiver perceives less - *P = .015 impact on schedule than the adult— (Spouse mean higher) child and other relative caregivers (child-in-law, siblings—in-law and others) VI. The spouse caregiver perceives greater + ***P = .000 impact on health status than the adult—child or other relative caregiver. VII. The spouse caregiver perceives greater - P = .690 impact on financial status than the adult-child or other relative caregivers (child-in—law, siblings—in-law, and others). 177 Table 5.13 (continued) Accepted + Hypotheses Rejected - Significance VIII. The spouse caregiver perceives more - ***P .001 (non-spouse family abandonment than the adult-child mean higher) or other relative caregivers. IX. Caregivers in the higher socioeconomic - P .743 spouse income level (income and education) perceive .253 education less impact on schedule than those in P .600 caregiver income the lower socioeconomic level. .629 patient income .781 education X. Caregivers in the higher socioeconomic — P .653 spouse income level (income and education) perceive .628 caregiver education less impact on health status than those P .800 caregiver income in the lower socioeconomic level. .409 patient income .118 education XI. Caregivers in the higher socioeconomic + ***P .001 spouse income level perceive less impact on finances .903 education than those in the lower socioeconomic P .100 caregiver income level. .358 patient income .119 education XII. Caregivers in the higher socioeconomic - *P .047 spouse income level perceive less family abandonment .962 education than those in the lower socioeconomic P .491 caregiver income level. .379 patient income .958 education *P g_ .05 **P g_ .01 ***P $_.001 Chapter VI SUMMARY AND CONCLUSIONS Overview A descriptive design based on data from a cross— sectional survey was used for this study. The relationship of certain caregiver characteristics were analyzed as to their affect on the caregivers' perception of impact on their schedule, health, finances, and feelings of abandonment. The research question was: ”How are selected caregiver characteristics related to perception of burden?” The interpretation and summary of the results were given in Chapter V. The limitations of the study and implications for nursing practice, nursing education, and research will be outlined in this chapter. Limitations of the Study While the sample for this study was large (N=307), there are a few limitations to the research. Respondents in the sample (caregivers and elderly recipients of care) were predominant Caucasian (92.2%) and also were fairly well educated. The subsamples were very small or disproportionate. These characteristics make generalization of the findings difficult. Perception of impact from caregiving may be different in other ethnic groups and less educated groups. The size of the sample, though, adds strength to the analysis. In further studies, other ethnic groups should be analyzed to compare results. 178 179 Another limitation is that this was not a probability sample, which would have been more representative of the p0pulation. The results can only be generalized to the actual population studied. Also, since the sample was non- random, inferences can be made rather than definite statistical conclusions. Individuals volunteered for the research, thus, their perceptions might be different than those who did not volunteer. The individuals participated in the study because they met the criteria of being a caregiver. One cannot assume that the caregivers were similar at the beginning of investigation. Previous conditions or situations in the caregivers' lives may be the explanation for differences in the dependent variables of perceived impact on schedule, health, finances, and abandonment. When participants enrolled in the study, each had been providing care for different lengths of time. The number of weeks, months, or years of caregiving can affect the perception of impact from caregiving. It is also difficult to assess the personal relationship between caregiver and elderly recipient of care. Perceived impact from caregiving can be affected by the type of interpersonal relationship between individuals of the caregiver-recipient dyad. The respondents had to be literate in order to complete the questionnaires. Others less educated or illiterate would be excluded because of the complexity of the study. The final limitation is that the age of the care-recipient was limited to those over 64 years of age. This criteria 180 eliminated the younger impaired adults being cared for by family members. There might be differences in perceptions of burden between caregivers of the older impaired adult and those of the younger impaired adult. Conclusions and implications from research In Chapter II the model for the caregiver study was presented. The characteristics of sex, socioeconomic status and relationship of the caregiver to the elderly person was Shown as affecting the perception of each dimension (schedule, health, finances, and abandonment). AS was presented in the hypotheses (Table 5.13), each of these characteristics have significance in certain domains, but not in all of the dimensions of impact. For example, there is a suggestion from the data that there is a difference in the perception of feelings of abandonment between the male and female caregiver. This difference could be an implication (not a cause—effect relationship) that the female perceives more feeling of family abandonment than the male, but there needs to be more research. From the analysis of the entire sample there is an indication that there are no differences between male and female caregivers in their perception of impact on schedule, health, and finances. Therefore, the sex characteristics may be important to consider in the dimension of abandonment, but not in the other dimensions. In analysis of the spouse and non-Spouse caregivers separately, there appears to be a relationship between the sex of the spouse and the perception of impact on schedule, health, and 181 feelings of abandonment, but not with perception of impact on financial status. Sex can be a factor in perception of impact on certain dimensions regarding spouse caregivers. There were not enough non—Spouse males for the results of the analysis between males and females to be statistically practical. Caregiving continues to be primarily a role of women. Even though women's roles are changing, that is more women may be career oriented or at least working, our culture still reflects the fact that caregiving is an appropriate activity for women, rather than men. In the perception of abandonment, there is more impact for female than male caregivers. The reasons could be that: 1) women do not receive as much support because they are expected to care for a spouse or parent; 2) men are less often involved in "hands on care" (personal care, meal preparation) than women and are not as involved in such time- consuming tasks; 3) a female adult-child caring for a parent may have the competing demands of work and family, and provide emotional support to their own family and elderly parents more so than men; 4) female adult-children might receive less assistance from a husband, whereas a male adult— child may receive assistance from his wife, as expected in our society; 5) women may have more difficulty than men keeping an emotional distance, either from their Spouse or parent, which is necessary to consider alternative strategies (Zarit et al., 1986); 6) men are used to the delegation of responsibilities and recognition of their own 182 limitations from participating in the work world (Fitting et al., 1986); and 7) coping Skills of women may differ from men. The reasons listed may influence a female's sense or perception of abandonment — she feels alone. Possible reasons for differences in perception of abandonment by males and females was addressed. There was also an inference from the study that female spouses perceived more impact on schedule, health, and abandonment than male spouse caregivers. The female spouse's perception of impact on her schedule may be a result of an interruption of a more leisure life—style since completing child raising, or possibly job responsibilities. She is less likely to be able to participate in activities and visit with friends since assuming the role of caregiving. The female spouses in the study may have been providing care for more functionally impaired mates than the male spouse- caregivers. According to Fitting et al. (1986), "a male caregiver who had defined his life in terms of his occupation was now in a new 'provider' role helping his Spouse with activities of daily living" (p. 251). The husband may not perceive an impact on schedule because he assumed another occupation in place of his earlier career. Also, as mentioned earlier, male caregivers may be able to delegate some responsibility easier and, thus, have some freedom from caregiving responsibilities. It is difficult to assess why female spouse caregivers perceive more impact on health than male spouses because 183 both groups are aging and, thus, have possibilities of chronic illness or decreased strength. There is a possibility that the male spouse caregivers in this study were healthier. Also, in our society, males do not tend to admit to health problems as easily as women. It can be difficult for a man to admit that he does not have enough physical strength or that his health has become worse. The care recipient of the female spouse may be more dependent than those of the male-spouse caregivers; thus, the female has more caregiving involvement and becomes tired or perceives changes in health. Reasons for abandonment, as mentioned earlier, may include: 1) the female spouse receives less support from others because caregiving is an expected role for women; 2) the male Spouse provides less personal care, in that other women in the family may assist with the care; 3) female Spouses have more difficulty in keeping an emotional distance from their mate; and 4) the male spouses utilize more formal service than the female Spouse. Implications from the findings thus far, are that interventions need to be focused on female caregivers, particularly in the dimension of abandonment. Programs that offer more supportive assistance in the home are needed. Home health programs are either too expensive for some caregivers or the criteria for coverage, as outlined by insurance or Medicare, are so restrictive that many families cannot be included. Also, the coverage is only for short periods of time. Allowances need to be made for caregivers 184 who provide care to an impaired elderly person for long periods of time, sometimes years. Women caregivers need special attention and support to help with decision making and problem solving regarding caregiving. Also, possibly the female caregiver may need support in asking other family members for help. Programs of respite care, one—night relief, and temporary care to ease the caregiving task would help not only the female, but any caregiver to perceive less abandonment. Support groups for women can be very effective in helping the female caregiver to feel less alone. Strategies of caregiving can be Shared. Women usually are more attuned to support groups than men. Respite programs, adult day care programs, and home health assistance can help lessen the impact on schedule for the female spouse caregiver, if there is a coordination of activities. Care management is needed because services can be fragmented and the coordinating of different services can be time consuming and difficult. In regards to the perceived impact on health by female- spouse caregivers (others have perceived impact on health, but indication from this research is that female-spouse caregivers perceive more impact than male—spouse caregivers), services Should be available in order to ease the caregiving tasks. Overnight services outside of the home, personal care and/or other services for in-home help, such as meal preparation, shopping, and transportation, are all needed so that the caregiver may have some relief, therefore, less strain. If the caregiver becomes exhausted, 185 he/she may be responsible for elderly abuse, he/She has to admit the elderly individual to an institution, or he/she suffers from severe deterioration in health. The relationship of the caregiver to the elderly recipient as a characteristic varies according to the dimensions of impact from caregiving. There was a significant difference between spouses and non—spouse caregivers in perceived impact on schedule, perceived impact on health, and perceived family abandonment. There is an indication that spouse caregivers perceive more impact on schedule and health than the non-spouse caregivers, and the non-spouse could perceive more impact from family abandonment than the spouse caregiver. The higher perceived impact on schedule by the spouse caregiver than the non—spouse caregiver can be explained by the fact that the caregiver lives alone with the debilitated person, so has no one accessible to stay with the patient for relief. Also, the spouse caregiver in this study might be providing care for a more functionally impaired person, so experiences more caregiving involvement than the non- spouse caregiver. Therefore, there are more interruptions in activities, or less free time. The implications are the same as mentioned earlier, that policies are needed to increase in—home relief service, reSpite care, adult day care, and a case management program to assist in coordinating services. The spouse caregivers perceive more impact on health than non—spouse caregivers because the Spouse caregivers are 186 older and are more likely to be suffering from chronic disease problems themselves. Here again the strain could be relieved by increased services so the caregiver may have some relief and time to themselves. If services are too expensive, the caregiver will not utilize them. The Medicare and Medicaid programs could relieve the strict criteria for in-home assistance. A self—care support group would be beneficial for promoting better health and wellness. From the analysis, there is a suggestion that the non— spouse caregiver (who is usually female) perceives more family abandonment than the spouse caregiver. The reasons for differences in perception of abandonment between the Spouse caregiver and the non—spouse (mostly adult-child in this study) caregiver is: 1) the adult child may be overwhelmed with all of the responsibilities of caregiving, plus running a household of her own; 2) the role of caregiving is not an expected role at this time in his/her life; 3) Siblings may be less likely to assist with care for a parent, or there may be disagreements over how care is provided so the adult child does not receive support; and 4) the adult child is usually female, and as mentioned several times, her Spouse may give little assistance because it is an expected role of the female and not of the male. The implication is that the non—spouse caregiver needs support services, if not from family and friends, then from formal services. A support group would be helpful in order to share concerns and strategies and, thus, the caregiver 187 would feel less abandoned in dealing with the problems and concerns of providing care to an elderly patient. Lastly, there is a suggestion from the results of this study that family relationship is more important as to its affect on perceived impact from caregiving than sex of the caregiver. The implication is that there needs to be a focus on programs (mentioned earlier) to help reduce perceived impact on schedule and health for spouses, and a focus on programs to reduce perception of family abandonment for adult children. The family members usually identified as the caregiver are, first, the spouse, where one exists, then the daughter. These groups need assistance to prevent exhaustion and burn out of the caregiver. The socioeconomic status of the caregiver appears to have little affect on perceptions of impact from caregiving except in the financial and abandonment dimensions. The relationship between socioeconomic status (income and education) and impact on financial status might be a natural assumption without the process of analysis. Actually spouse income, not education, were significant in the domains of finance and abandonment. Those individuals in a higher socioeconomic level perceive less problems with finances than those in the lower socioeconomic level. There is no eXplanation why those in the higher socioeconomic level perceive more abandonment; unless those in higher economic levels are more involved with activities and business affairs so give less support to family caregivers. Other problems of caregiving might be more of a pervasive issue 188 than finances such as impact on schedule and health. The variable of socioeconomic status might not be appropriate or important to analyze in the future. The entire sample of caregivers was measured for perception of impact for each dimension of schedule, health, finance, and feelings of abandonment. It appears that impact on schedule is perceived to be greater than the impact on health, finance, and abandonment. So again, support is needed for programs of care management, respite services, and in—home help. As derived from this research (the functional status of the elderly person (measured by PADL'S, PIADL'S, and PMOBL'S) did not affect the perceived impact in the financial domain or family abandonment. In the dimensions of schedule and health, the functional status, particularly PADL'S and PMOBL'S, were more important than other independent variables such as caregiver sex for the spouse caregiver in the dimension of schedule. For non—Spouses, in the dimension of schedule, the only significant variable was PMOBL'S. For the dimension of health, the PIADL variable was higher (from Beta) in relative importance than caregiver sex (spouse—caregiver). The PIADL probably was not an adequate variable Since there was not much variability in the sample for these activities. Therefore, from the results of this study, functional status does not appear to make a difference in the perception of the two dimensions of finance and and family abandonment. The severity of the impaired elderly person possibly has an affect on the 189 perceptions of impact on schedule and health particularly for the female spouse caregivers. In Figure 3, the findings from the study are presented. Implications for Nursing Practice There are implications for nursing practice from this study. Orem's (1980) theory of self-care will be used in understanding the application of the nursing process for the caregiver. Orem (1980) states "that self-care is the practice of activities that individuals initiate and perform on their own behalf in maintaining life, health, and well being" (p. 35). Orem's philosophy is that people have the innate ability to care for themselves. The innate ability to care for one's self could be a limitation in Orem's theory in the sense that if you can participate in self care, why is the assistance of a nurse necessary. Orem focuses on an individual being ill or injured. Therefore, when an individual is ill or not functioning normally, he/she needs assistance and/or instruction in self care. The eight self- care requisites according to Orem include the maintenance of a sufficient intake of air, water, and food; the provision of care associated with the elimination of processes and excrement; a balance between activity and rest; a balance between solitude and social interaction; and the promotion of human functioning and development in accord with human potential, known human limitations, and the human desire to be normal (Orem, 1980). When problems occur and interfere with one's ability to meet these universal self—care 190 Figure 3. Graphic Presentation of Findings __.D.—__ Caregiver Characteristics Perceived Impact \L Relationship Sex 11 Relationship Socioeconomic (spouse) \/ \/ Sex Relationship Socioeconomic (spouse) \/ \/ 4V 1. Schedule care situation Figure 4: Nursing Model Reproduced by permission from Orem, Dorothea E.: Nursing: concepts of practice, ed. 3, New York, 1985, McGraw—Hill Book Co.; copyrighted by The C.V. Mosby Co., St. Louis. 194 caregiver feel motivated to try strategies, and to properly refer the caregiver. The box for nursing intervention is used to show that after the nurse and caregiver have developed a perspective on the situation and agree about the situation, strategies can be developed. The result would be that the caregiver would feel less impact from the role of caregiving, or the caregiver may develop the ability to c0pe. Possible type of intervention (as shown in Figure 4) could be referrals and utilization of community agencies, problem—solving technique, referral to support group, education, and allowing verbalization of feelings. In the dimension of abandonment, the CNS in primary care should assess the caregiver's expectations of support from family or friends; the CNS should also assess if the family has been supportive in other crisis or difficult situations. The CNS could convene a family meeting to gather an understanding of other family members' concerns and the family members knowledge of the elderly person's disability. Types of assistance that could be helpful to the caregiver could be addressed. The CNS could suggest frequent visits. This and social support from others are helpful in preventing feelings of abandonment. This type of intervention (family conference) would only be accomplished after developing some support and trust with the caregiver. Also, a function of a clinical nurse specialist in primary care would be to find acceptable respite services or in-home help, and also teach and describe the accessibility of the 195 services to the caregiver. The teaching, regarding access to services, reinforces the fact that the caregiver is in the supportive-educative system of Orem's theory. The other function for a CNS in primary care, in trying to lessen the impact of abandonment, would be to offer or refer the caregiver to a support group. In the caregiver support group, strategies and problems can be shared. The caregiver would feel less abandoned. Lastly, the CNS needs to provide continuity, by monitoring for changes in the caregiving situation so the caregiver does not perceive abandonment by a professional. Case management could be a function of the CNS, at the primary care site, in helping alleviate a perceived impact on schedule. Services (reSpite care, adult day care, in- home help) in communities are fragmented and overlapping in assistance offered. Many contacts have to be made in order to assess which service is appropriate for the caregiver. A CNS could make the contacts. describe them to the caregiver, and coordinate the services. Thus, the caregiver would have some free time being able to enjoy some activities, visit some friends, plus enjoy some relief from constant caregiving. The dimension of schedule appears to be the domain with the most perceived impact in this study. The CNS should verbalize the potential of impact on schedule to the caregiver, and strategies utilized by others so that the caregiver is more aware that this happens with others. Some caregivers at the beginning stages of caregiving may not perceive this as happening. Anticipatory guidance can be 196 provided by the CNS. Again, family support can be helpful in allowing the caregiver to have some leisure time. In the health dimension (which is the second highest perceived impact in this study) particular focus should be given to the spouse caregiver by the CNS in primary care. If possible, the CNS should promote self care, as defined in Orem's theory. If the caregiver is well, he/she is better equipped to cope and handle providing care to an elderly family member. An emphasis should be placed on proper exercise and diet, and time for themselves. The CNS must assess for signs and symptoms of increased fatigue, and/or change in health status. A professional such as a CNS reinforces that the caregiver should enjoy free time, participate in an exercise program, and visit a doctor as needed. The caregiver might need the permission from a CNS. In other words, the caregiver does not feel so guilty participating in other activities if a CNS reinforces this is needed. Female caregivers, in particular, may tend to feel guilty more so than male caregivers. Females may need help to learn how to delegate responsibility (if others are available), so that they are not over burdened by the task of caregiving. Also, the CNS must teach proper caregiving skills which might make it easier to provide care for the patient. As in the other dimensions, the CNS can describe and refer respite services, in—home help, chore providers, transportation services, overnight services outside the home, collaborate with the 197 caregiver's physician who might relieve the caregiver, thus, promoting wellness and health. By the nurse practicing Orem's theory, that people have the ability to care for themselves, he/she can accept the caregiver's perspective of the situation; and through mutuality help the caregiver to initiate activities that help maintain life, health and well-being. Therefore, the impact on the caregiver's life from providing care to an elderly person might be lessened. Keeping in mind the perception of impact from caregiving, the CNS in primary care can assess the caregiver's physical status, psychosocial status, and spiritual status. The CNS could possibly utilize such scales as the Beck Depression Scale (1961) as an awareness tool for the caregiver, the Ireton Personal Inventory (1979), or possibly use the questionnaire items in each dimension of this study as a screening tool. Answers to these items make the caregiver more aware of his/her feelings and also give the CNS a perspective of the caregiver's strengths and weaknesses. The CNS needs to assess the past experiences of the caregiver, including any caregiving roles in the past, plus the personal relationship between the caregiver and the elderly recipient of care. These assessments provide a better understanding of the caregiving role for both the caregiver and the CNS. The CNS in primary care as a counselor can provide a stabilizing human support relationship. The caregiver can feel free to express concerns and frustrations. Thus, a relationship of 198 mutuality can be developed in order to facilitate care of the impaired elderly person, enhance the well being of the caregiver. The caregiver and the CNS can begin problem solving and attaining goals together. From results in this study, the CNS needs to focus on: 1) the female caregiver, who possibly perceives more family abandonment than the male caregiver 2) the female spouse who appears to perceive more impact on schedule, health, and abandonment than the male spouse; 3) the fact that the spouse may perceive more impact on schedule than the non—spouse; and 4) the non—spouse may perceive more family abandonment than the Spouse. The CNS should assess and attempt to utilize either family members or community agencies for support for the caregiver. From the indications from this study, the CNS can utilize the knowledge at the primary care site to counsel the caregiver using anticipatory guidance and giving support. For example, the CNS can prepare the female caregiver that she might feel abandoned. Once the care provider is aware of such a possibility (abandonment), he/She and the CNS can begin to focus on possible support systems to lessen the feelings of abandonment. This is also true for the female spouse regarding perception of impact on schedule, health, and abandonment. The CNS can give an objective analysis of the situation. Implications for Nursing Education The elderly are living longer in our society. Their problems are multiple, chronic, and long term. The major 199 share of support and care for the older individual is provided by the family. It is important that nursing students understand the implications of caring for an elderly individual at home, sometimes for many years. Curriculum on geriatric care and on the physiological and psychological changes in aging would provide an understanding of the elderly person. Curriculum in the past has included nursing care of clients without differentiating the pathophysiological and psychological changes in aging from the younger clients, thus, little differentiation in types of nursing care. Nursing education should include courses on the awareness of possible caregiving consequences, such as 1) the caregiver caring for an individual alone and the perception of abandonment, especially for the female caregiver and adult- child caregiver; 2) the caregiver not being able to attend other activities because of caregiving and thus a perception of impact on schedule, especially for the spouse; 3) negative interactions among family members not only between the caregiver and the care—recipient, but other members who the caregiver feels should be offering more assistance adding to perception of abandonment; 4) the possible deterioration in health of the caregiver either mentally (depression) or physically, thus, leading to a perception of impact on health, especially for the female spouse; and 5) deterioration or lack of a family support system leading to more feelings of abandonment. 200 In many nursing schools, curriculum is technical and hospital based rather than community oriented. Visiting nurse affiliations should be incorporated, particularly including student experiences in home visits to individuals caring for an impaired elderly person in their home. 'The student needs to follow a family in order to observe and address the caregiver's perception of impact on his/her schedule, his/her health, or on abandonment, or all three dimensions. The students need to be aware that the female caregiver may perceive more abandonment than the male caregiver, or that the female spouse perceives more impact on health than the male spouse, the spouse perceives more impact on schedule than the non-spouse, and that the non- spouse caregiver perceives more abandonment than the spouse caregiver. Another advantage for students being involved in community or visiting nursing is to learn of various community resources or self—help groups in which to refer the caregiver. In a graduate nursing program, studies on assessment and management of the caregiving situation, and possible consequences of caregiving such as elder abuse should be included. If nurses on the graduate level are aware that the caregiver's perception of impact on schedule, on health, and abandonment can result in the caregiver abusing the elderly person, or the caregiver cannot bear the stress of caregiving, preventive measures can be initiated. The measures mentioned earlier were coordination and referral of respite or in-home health services, support to the caregiver 201 through listening and teaching caregiving skills and promoting self—care so the caregiver's health does not deteriorate. Graduate nursing students should be aware of government programs and policies affecting the caregiver and the elderly recipient. Also, graduate students need to be made aware of how to possibly influence change in government policy such as being active in a professional organization and participating on committees that actively promote change in government policy. Educational courses should include interviewing and counselling techniques for the graduate nurse, so that he or she can assist the caregiver in c0ping with crises and anticipatory guidance in regards to the dimensions of impact, such as adult-child caregivers perceive more impact from abandonment than the spouse caregiver. The findings in this research support the fact that the caregivers experience some impact from assisting an impaired person, and nurses of all levels should be aware of the impact, particularly in the dimensions of schedule, health, and abandonment. Supportive counselling can be beneficial in allowing caregiver to express frustration and anger. Implications of Nursing Research The caregiver inventory tool should be utilized in further research in order to strengthen its validity. As has been noted throughout the thesis, various instruments mainly with global ratings have been used to study the impact of caregiving. Findings in this study have been contradictory from other studies. In studies, utilizing the 202 same instrument, comparison of results is more valuable. Through the use of the same instrument, comparison of results increases knowledge. Through the use of subscales (each dimension of the caregiver inventory) the various dimensions of caregiving can be increasingly understood. By scoring with a global rating as others have done, the score masks each dimension. The item for each dimension (schedule, health, financial, and abandonment) could be researched as a screening instrument for caregivers to determine or predict if particular caregivers are at risk, and to assess if caregivers perceive impact in a particular dimension. If perceived impact is higher in one domain, then assistance can be immediately focused in the area. It can be useful as an assessment tool during an interview of a caregiver by a CNS in primary care. Other dimensions that could be added are a spiritual dimension (what gives life meaning), a dimension of coping, and possibly a dimension involving frustration and resentment. Other possible ideas for research are as follows: 1. Study if caregivers of an impaired elderly person perceive more strain than other individuals who face unusual and stressful events in their lives. 2. Study caregivers of the impaired elderly in comparison to caregivers of younger impaired adults or impaired children to look at the same dimensions. Are the dimensions perceived with the same amount of impact. If there are differences, 10. 203 are there reasons that may be beneficial to help relieve impact for the caring of the elderly. Study if caregivers of the impaired elderly perceive more stress or exhibit more physical or mental symptoms than elderly non—caregivers. Compare impact of caregiving among different ethnic groups. For example, do the Amish perceive same impact as Caucasian or black elderly caregivers? Compare perceived impact of caregiving between rural and urban groups. Study interpersonal relationship of caregiver and elderly recipient of care previous to the caregiving situation. Study if relationship has affect on impact from caregiving. Study individual's perspective of caregiving and any positive or negative results (such as guilt, physical mental symptomatology) six months to one year after experience has ended. Study if there is a difference in dimensions between female and male non-spouse caregivers. Research if those providing care to an elderly impaired individual perceive more stress in the caregiving situation than those in other difficult situations. Study reasons some caregivers perceive more impact than others. Are coping and decision making skills better? Is there more support for one caregiver than the other? 204 imam. In Chapter VI, the limitations of the study, the implications for the CNS using Orem's theory, and the implications and recommendations for nursing education and research were presented. Appendices Appendix A Informed Consent Procedure APPENDIX A Informed Consent Procedure Before we get started, I would like to take some time to explain what will be involved in taking part in this study and to answer questions you may have about taking part. Basically, over the course of the year, there will be two home visits which will be arranged at your convenience as well as several telephone calls and mailed questionnaires. There are some other things that are important for me to let you know about relative to taking part in this study. One thing is that taking part in the study will not change the health care or services that you are now receiving. The study does not provide any services and cannot arrange for services for you. Also, if your situation should change during the year so that you are no longer helping your relative, we would still like to maintain contact and ask questions of you. It is important for you to know that all of your responses during the course of the study are anonymous and confidential. Your name and anything which would identify you personally will be kept separate from the answers you give. Neither your name nor the name of your family member will be given out to anyone else or used in any written reports of the study at any time. We want you to be aware that taking part in the study is voluntary and you are free to withdraw from the study at any time without consequence. Do you have any questions about taking part in the study? I have a written consent form with me that I would like to have you sign. I'll leave one copy of the consent form for you to keep and take one copy to keep with the records of the research study. IF SUBJECT DOES NOT WISH TO SIGN FORM, LEAVE THEM A COPY AND PROCEED WITH THE INTERVIEW. INCLUDE THIS INFORMATION ON THE INTERVIEWER ASSESSMENT. 205 Appendix B Consent Form MICHIGAN STATE UNIVERSITY Family Caregiver Study CONSENT FORM The study in which we are asking you to participate is designed to learn more about the ways in which caring for an older family member affects the person providing the care. Over the next year, family caregivers will be interviewed by a member of the Family Caregiver Study research staff three times (at intake, six months, and at one—year). Each interview will take approximately one and one-half hours to complete. Caregivers will be asked to complete written questionnaires and to answer questions asked by the interviewer. They will also be asked to report, each three months during the year, on any health care services used. If you are willing to participate, please read and Sign the following statement: 1. I have freely consented to take part in a study of caregivers and their patients conducted by the College of Nursing and the Department of Family Practice, College of Human Medicine, at Michigan State University. 2. The study has been described and eXplained to me and I understand what my participation will involve. 3. I understand that participating in this study is voluntary. 4. I understand that I can withdraw from participating at any time. 5. I understand that the results of the study will be treated in strict confidence and, Should they be published, my name will remain anonymous. I understand that within these restrictions, results can, upon request, be made available to me. 6. I understand that no immediate benefits will result from taking part in this study, but am aware that my responses may add to the understanding of health care professionals of the experience of being responsible for an older family member. I, , state that I understand what is required of me as a participant and agree to take part in this study. Signed Date (Signature) 206 MICHIGAN STATE UNIVERSITY uranium! cowurrrr: ON mmcu INVOLVING EAST LANSING . MICHIGAN . “IN-[04‘ HUMAN SUBJECTS (UCRIHS) m ADMINISTRATION BUILDING Ism m-zm May 3, 1988 Linda Campbell 28574 Fairlanc Drivc Dowagiac, MI 49047 Dear Ms. Campbell: Subject: "CAREGIVER PERCEPTION OF BURDEN AS RELATED TO SELECTED CAREGIVER CHARACI‘ERISTICSz‘iSS-l lfl” The above project is exempt from full UCRll-IS review. I have reviewed this project and approval is granted for conduct of this project. You are reminded that UCRIHS approval is valid for one calendar year. If you lan to continue this project beyond one year, please make provisions for obtaining appropriate CRIHS approval prior to May 3, 1989. Any changes in procedures involving human subjects must be reviewed by the UCRIHS prior to initiation of the change. UCRIHS must also be notified promptly of any problems unexpected side effects, complaints, etc.) involving human subjects during the course of the wor Thank you for bringing this project to our attention. If we can be of any future help, please do not hesitate to let us know. . JKH/sar cc: B. Given MSU is u N/imtiw Anion/Equal Opportunity tum-no- 207 Appendix C Approval Letter from UCRIHS Review Appendix D Relevant Questions for Sociodemographic and Other Information for Caregiver Appendix D SOCIODEMOGRAPHIC - CAREGIVER I'd like to start today by asking you questions about your background. 1. 4. 6. What is your date of birth: / / month/date/year how far did you go in school? Did you complete: Grade school or less Some college or technical training Some high school College High school Graduate or professional school (post baccalaureate degree) INTERVIEWER: MARK SUBJECT'S RACE. CLARIFY IF NECESSARY. Caucasian American Indian Black Oriental/Asian/Pacific Islander Hispanic Other (please specify) Sex of Caregiver: Male Female What is your relationship to the person you provide care for: spouse parent daughter (in-law)/son (in-law) brother (in—law)/sister (in—law) other (specify ) Caregiver Employment 1. Are you currently employed for pay? (CHECK) YES Are you employed: Full-time Part-time What is your occupation? (write in occupation) 208 FINANCES FOR SPOUSE CAREGIVERS "Now I would like to ask you to answer questions about the financial situation of your household. This information will be held in strictest confidence and will not be linked to you as an individual in any way. This information is necessary to describe the financial situations of families in our study as a group." FOR NON—SPOUSE CAREGIVER It I" now I would like you to answer questions about your finances and your relatives finances. This information will be held in strictest confidence and will not be linked to you as an individual in any way. This information is necessary to describe the finances of the families in our study as a group. We have separate questions for your finances and for your relatives finances." FOR SPOUSE CAREGIVERS 2. Considering all of these sources of income, what was the total income before deducting for taxes for you (and your SPOUSE) in 1986. Was it: (check one) $ O-$1,999 $ 8,000-$ 8,999 $2,000-$2,999 $ 9,000-$ 9,999 $3,000-$3,999 $10,000-$14,999 $4,000—$4,999 $15,000-$19,999 $5,000—$5,999 $20,000-$24,999 $6,000-S6,999 $25,000-$29,999 $7,000-$7,999 $30,000 or above lllllll lllllll FOR NON-SPOUSE CAREGIVERS 2. Considering all of these sources of income, what was the total income before deducting for taxes for your household in 1986? Was it: (CHECK ONE) $ O—$1,999 S 8,000-$ 8,999 $2,000-$2,999 $ 9,000-$ 9,999 $3,000—$3,999 $10,000—$14,999 $4,000—$4,999 $15,000-$19,999 $5,000-$5,999 $20,000-$24,999 $6,000—$6,999 $25,000—$29,999 $7,000-$7,999 $30,000 or above 209 RELATIVES FINANCES 2. Considering all of these sources of income, what was your relative's total income before deducting for taxes in 1966? Was it: (CHECK ONE) S O-$1,999 $ 8,000-$ 8,999 $2,000-$2,999 S 9,000—$ 9,999 $3,000-$3,999 $10,000-$14,999 $4,000—$4,999 $15,000-$19,999 $5,000—$5,999 $20,000-$24,999 $6,000-$6,999 $25,000-$29,999 $7,000—$7,999 $30,000 or above 210 Appendix E Sociodemographic Questions for Relative Appendix E SOCIODEHOGRAPHIC — RELATIVE Now, I am going to ask you questions about your relative's background. 1. What is the date of birth of your relative / / month/date/year 2. INTERVIEWER: CONFIRM SEX 0F RELATIVE IF NECESSARY Sex of relative: Male Female 3. INTERVIEWER: CONFIRM RACE IF RELATIVE IS NOT PRESENT -— CLARIFY IF NECESSARY Race of relative: Caucasian American Indian Black Oriental/Asian/Pacific Islander Hispanic Other (please specify) 4. How far in school did your relative go: Did he/she... ___Finish grade school or less ___Complete high school ___Craduate from high school ___Have college or technical training ___Graduate from college Complete a graduate or professional degree (post baccalaureate degree) 211 Appendix F Questions for Relative's Activities of Daily Living Instrumental Activities of Daily Living and Mobility I. Appendix F CAREGIVER INVOLVEMENT Questions for Dependencies in Activities of Daily Living The following pages describe a number of activities that your relative may need help with either some or all of the time. First, for each activity, check YES or NO to indicate whether your relative needs any help with that activity. 1. II. 10. 11. Does your relative need help with YES NO Does your relative need help with undressing? YES NO Does your relative need help with shaving? YES NO Does your relative need help with bath? YES NO Does your relative need help with commode? YES NO Does your relative need help with bed? YES NO Items for Relatives' Instrumental Daily Living Does your relative need help with YES NO Does your relative need help with YES NO 212 eating? dressing and combing hair or taking a shower or using toilet or getting in and out of Activities of shopping? the housework? 12. 13. 14. 15. III. Does your relative need YES Does your relative need YES Does your relative need own money? YES Does your relative need transportation? YES help with NO ____ help with NO ____ help with NO help with NO Items for Relative's Mobility Does your relative need YES Does your relative need the house? YES Does your relative need bed? YES help with NO help with NO help with NO 213 laundry? cooking? handling his/her arranging his/her own walking? getting around getting in and out of Appendix G Items Utilized from Caregiver Inventory Appendix G Items Utilized for Each Dimension of Impact (schedule, health, finance, and abandonment) We are trying to understand how providing care for your family member has affected you, your relationships with others, and your social activities and daily routines. In the questions that follow, please circle the response that most represents how you feel about each statement. The blank line in some statements represents the name of the elderly person for whom you provide care. It may be helpful for your to place the initials of that person on the blank line. Answer all the questions in response to caring for the elderly person. (Circle one reSponse for each statement.) EXAMPLE Since I began caring for , my day-to-day schedule has changed a lot. STRONGLY NEITHER AGREE STRONGLY AGREE AGREE NOR DISAGREE DISAGREE DISAGREE FINANCIAL IMPACT OF CAREGIVING 3. My financial resources are adequate to pay for things that are required for caregiving. 10. It's difficult to pay for '8 health needs and services. 16. Caring for has put a financial strain on the family. 31. If I could afford it, I would find some other way to care for FAMILY ABANDONMENT OF THE CAREGIVERS 2. My family works together at caring for . 8. I wish the family depended less on me to care for . 15. Since caring for , I feel that my family has abandoned me. 22. It is very difficult to get help from my family in taking care of . 27. Others have dumped caring for on to me. 214 41. My family (brothers, sister, children) left me alone to care for IMPACT OF CAREGIVING ON SCHEDULE 11. My activities are centered around care for . 18. I have to stop in the middle of my work or activities to provide care. 24. I have eliminated things from my schedule since caring for . 32. The constant interruptions make it difficult to find time for relaxation. 46. I visit family and friends less since I have been caring for . IMPACT ON CAREGIVER HEALTH 14. I am healthy enough to care for . 29. It takes all my physical strength to care for . 36. My health has gotten worse since I've been caring for 50. I have enough physical strength to care for . 59. Since caring for , it seems like I'm tired all the time. 215 Appendix H Items for Family/Friends Support 13. Appendix H Items for Family/Friend Support The questions I have just asked you are about services received through agencies. Now I would like to ask you about assistance you have received for YOURSELF from FAMILY OR FRIENDS. INTERVIEWER: IF YES, ASK "HOW MANY TIMES IN THE PAST THREE MONTHS . . . " IN THE PAST TIIREE MONTHS, HAVE FAMILY FRIENDS... a) Checked regularly (two to three times a week) on 123 to be sure you were all right? YES NO How many times: b) Helped you with routine chores (cleaning/ washing)? 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