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I... a. at )T- o r .. .n‘iu'l tin 9.; ,F. m TE UNIVERSITY UBRARI llilu'i'l‘flllwuImulmum mil 3 1293 00759 1674 LIBRARY ' Michigan State University This is to certify that the dissertation entitled Caregiver Characteristics Contributing to Person- Environment Fit for Older Stroke Survivors: A Qualitative, Exploratory Study presented by Deborah L. deLaski—Smith has been accepted towards fulfillment of the requirements for maturati— degree in lhilasnphL Major professor Date MW MSU is an Affirmative Action/Equal Opportunity Institution ' 0-12771 PLACE IN RETURN BOX to remove this chedtout from your record. TO AVOID FINES rota-n on or before due due. MSU Is An Affirmdlvo ActiorVEqual Opportunity Inwmtlon ammo-9.1 CAREGIVER CHARACTERISTICS CONTRIBUTING TO PERSON-ENVIRONMENT FIT FOR OLDER STROKE SURVIVORS: A QUALITATIVE, EXPLORATORY STUDY By Deborah Lynn deLaski-Smith A DISSERTATION Submitted to Michigan State University in partial fulfillment of the requirements for the degree of DOCTOR OF PHILOSOPHY Department of Family and Child Ecology 1989 b7871fi (T ) __,4 ABSTRACT CAREGIVER CHARACTERISTICS CONTRIBUTING TO PERSON-ENVIRONMENT FIT FOR OLDER STROKE SURVIVORS: A QUALITATIVE, EXPLORATORY STUDY By Deborah Lynn deLaski-Smith A qualitative, case study methodology was used to explore caregiver characteristics that enhanced or inhibited person-environment fit in households where a person over age 55 had recently suffered a stroke. Research questions addressed the relationship between person-environment fit and the physical and demographic characteristics of the stroke survivor, caregiver characteristics and caregiver strain. A person-environment fit scale was developed to assess the congruence of fit for the stroke survivor within the home setting. The scale incorporated the following variables: pre and post-stroke health; Activities of Daily Living; use of aids or devices for ambulation; housing features supporting ambulation; and the physical capabilities of the caregiver for providing care. Secondary data analysis from The Experience of Stroke as a Critical Life Event: Supportive Ecosystems for Older Persons and Their Families, funded by the American Association of Retired Persons, Andrus Foundation, was Deb com strol sun' stud had : pers< fit. fit. ( healt‘ beha. being giVEr Stroke Deborah L. deLaski-Smith completed. The major study involved a three part series of interviews with 20 stroke survivors, their designated informants and primary caregivers. Stroke survivors were over age 55 and recuperating from a recent stroke. Case studies were prepared for ten families. The stroke survivor in these families had problems with Activities of Daily Living, particularly ambulation, and the person-environment fit score was zero or a negative score indicating a problem fit. Findings showed caregiver characteristics that support person-environment fit. Common characteristics included: good physical health, good emotional health, feeling prepared for caregiving, and exhibiting healthy caregiving behaviors. Caregivers in the negative person-environment fit group reported being less prepared in general for providing care, for making environmental changes, and knowing who to contact for making these changes. Higher care- giver strain was associated with negative person-environment fit. Negative person-environment fit was associated with more pre and post stroke ailments, more problems with Activities of Daily living and the use of wheelchairs in homes that did not accommodate passage. Ironically, stroke survivors and caregivers reported housing satisfaction in spite of negative person-environment fit. Implications for public policy are discussed, and future research endeavors are proposed. Copyright by DEBORAH L. deLASKI-SMITH 1989 DEDICATION To my loving and patient husband, Gene, whose support will always be treasured. 5P aft ACKNOWLEDGEMENTS My deepest appreciation goes to my dissertation committee, Dr Barbara Ames, chairperson, and members Sister Mary Honora Kroger, PhD, Dr. Susan Mireley, Dr. Marilyn Nagy and Dr. Dennis Keefe. Their encouragement, suggestions and overall cooperation for assisting in the completion of this project has greatly enriched my scholarly development. Special thanks to Barbara for the Summer, Fall and Winter hours we spent together and her continual guidance, refinement and support for the writing of this document. I am additionally grateful to Dr. Bonnie Maas Morrison for the years of support she gave me with my doctoral program. Serving as my initial chairperson, she gave guidance and encouragement above and beyond the call of duty. My best wishes to her with her professional move out of state. Thank you to my entire family, immediate and extended. Your love and positive inspiration kept me motivated to press on toward completion. A final special thanks to my parents, who always told me I could do anything I put my mind to. Problems are the challenges that make life exciting and their positive attitude has given me great strength. vi TABLE OF CONTENTS Page LIST OF TABLES ..................................................................................................... x LIST OF FIGURES ................................................................................................... xii CHAPTERS: I. INTRODUCTION ............................................................................ 1 Purpose of the Study .............................................................. 3 Relationship of Study to Major Project ................................ 3 Significance of the Research .................................................. 4 Theoretical Approach ............................................................. 7 Human Ecological Approach .......................................... 7 Person-Environment Fit ................................................... 10 Study Limitations .................................................................... 13 11. REVIEW OF LITERATURE ............................................................ 15 Components of Person-Environment Fit Scale for This Study .................................................................. 15 Stroke .................................................................................. 15 Pre-Stroke Health .............................................................. 17 Symptoms of Stroke .......................................................... 17 osis ............................................................................ 18 Post-Stroke Physical Conditions ..................................... 19 Activities of Daily Living ................................................. 20 Use of Aids or Devices for Ambulation ......................... 22 Physical Characteristics of the Housing Environment .................................................................... 24 Physical Changes to the Home to . Facilitate Ambulation ..................................................... ' 28 Other Environmental Considerations ............................ 30 Caregiver Characteristics ....................................................... 35 Caregiver Demographics ................................................. 36 Relationship to Patient ................................................... 36 Gender of Caregiver ....................................................... 39 Employment ..................................................................... 40 vii TABLE OF CONTENTS continued REVIEW OF LITERATURE Page Marital Status .................................................................. 40 Age of Caregiver ............................................................ 41 Race of Caregiver ........................................................... 42 Religious Affiliation. ...................................................... 42 Education ......................................................................... 43 Income and the Economics of Caregiving .................. 43 Summary of Demographic Characteristics ................ 46 Physical Health of Caregiver .......................................... 46 Psychological Characteristics of Caregiver .................. 48 Mental Health and Caregiver Strain ........................... 48 Preparedness and Healthy Caregiving Behavior ........................................................................ 50 Help-Seeking Behavior .................................................. 50 Summary of Psychological Characteristics ................. 52 Social and Community Resources for Caregivers .................................................................. 52 Housing Resources for Caregivers ................................. 54 III. METHODOLOGY ............................................................................ 56 Research Questions ................................................................. 56 Research Variables .................................................................. 57 Dependent Variable .......................................................... 60 Independent Variables ..................................................... 66 Research Design of Major Project ......................................... 73 Selection of Major Project Sample ........................................ 74 Description of Major Project Sample .................................... 75 Interviewing Procedures ........................................................ 77 Confidentiality ......................................................................... 78 Instrumentation ....................................................................... 78 Sample Selection for Case Studies ........................................ 79 Data Analysis ........................................................................... 80 IV. CASE STUDY SUMMARIES .......................................................... 82 Cases With Zero Person-Environment Fit Score ................ 82 Case 3 .................................................................................. 82 Case 5 .................................................................................. 87 Case 10 ................................................................................ 92 Case 13 ................................................................................ 96 Cases With Negative Person-Environment Fit Score ........ 101 Case 7 .................................................................................. 101 Case 11 ................................................................................ 106 Case 17 ................................................................................ 11 1 Case 19 ................................................................................ 1 16 Case 18 ................................................................................ 120 Case 16 ................................................................................ 125 viii TABLE OF CONTENTS continued Page V. SUMMARY OF FINDINGS AND DISCUSSION ....................... 130 Findings For Research Question One .......................................... 130 Demographic Characteristics of Stroke Survivors ............ 130 Physical Characteristics of Stroke Survivors ..................... 133 Pre-Stroke Health ............................................................ 133 Post Stroke Health ........................................................... 135 Activities of Daily Living ............................................... 136 Use of Aids for Ambulation ................................................. 138 Physical Characteristics of the Housing Environment ........................................................................ 139 Housing Environment for Ambulation ........................ 139 Other Housing Characteristics ....................................... 140 Housing Satisfaction and Future Housing Plans ........ 141 Findings For Research Question Two .......................................... 142 Demographic Characteristics of Caregivers ...................... 142 Physical Characteristics of Caregivers ............................... 145 Psychological Characteristics of Caregivers ...................... 148 Social Characteristics of Caregivers .................................... 151 Housing Resources for the Caregiver ................................. 153 Findings For Research Question Three-..” ................................. 154 V1. CONCLUSIONS AND RESEARCH IMPLICATIONS .............. 157 Analysis of Models ......................................................................... 157 Conclusions from the Comparison of the Two Person-Environment Fit Groups ............................................... 161 Research Question (1) ............................................................ 161 Research Question (2) ............................................................ 164 Research Question (3) ............................................................ 167 Study Implications .......................................................................... 168 Implications for Service Providers ................................................ 171 Implications for Public Policy ....................................................... 172 Implications for Ecological Family Research .............................. 175 Future Research ............................................................................... 176 APPENDICES APPENDDC A. ESTABLISHMENT OF SCALES FROM SURVEY INSTRUMENT ....................................................... 179 B. PRESCREENING TELEPHONE INTERVIEW ............................ 181 C. CONSENT FORM ............................................................................ 185 D. INTERVIEW INSTRUMENTS ....................................................... 187 E. UCRIHS LETTER OF APPROVAL ............................................... 21 LIST OF REFERENCES ........................................................................................... 222 ix (J! 10 11. 12. 13. 10. 11. 12. 13. LIST OF TABLES Page Frequencies of Select Demographics For the Stroke Survivors by Person-Environment Fit Score .......................................... 131 Stroke Survivor Income and Number of Persons Supported on the Income by Person-Environment Fit Score .............. 132 Pre-Stroke Physical Conditions for the Stroke Survivor by Person-Environment Fit Score ............................................ 134 Pre-Stroke Overall Health Rating and Health Interference with Activities by Person-Environment Fit Score ............ 135 Frequencies of Post Stroke Physical Conditions by Person-Environment Fit Score ............................................................. 136 Performance of Activities of Daily Living for Ambulation by Person-Environment Fit Score ...................................... 138 Types of Ambulation Aids by Person-Environment Fit Score ............ 138 Frequencies of Select Demographics for Caregivers by Person-Environment Fit Score .................................................................. 143 Income and Number of Persons Supported, Changes in Financial Situation and Income Adequacy by Person-Environment Fit Score... 145 Caregiver Health Before the Stroke by Person-Environment Fit Score .................................................................. 146 Changes in Eating or Meal Preparation Patterns for Caregivers Since the Stroke by Person-Environment Fit Score ................................ 147 Caregiver Preparedness for Six Items by Person-Environment Fit Score ....................................................................................................... 149 Desire to See Friends by Person-Environment Fit Score ...................... 152 X LIST OF TABLES continued Page 14. 15. 16. 17. Comparison of Caregiver Strain Scores and Person- Environment Fit Scores by Case Numbers ............................................. 154 Caregiver Strain Index by Person-Environment Fit Score ................... 155 Stroke Survivor Characteristics by Person-Environment Fit Score ....................................................................................................... 162 Caregiver Characteristics by Person-Environment Fit Score ....................................................................................................... 165 xi 10. 11. 12. 13. LIST OF FIGURES Page Stroke Survivor Ecological Model ............................................................ 9 158 Factors Comprising Person-Environment Fit ......................................... 13 13 Caregiver Impact on Person-Environment Fit ........................................ 59 Case 3 - Person-Environment Fit Score = 0 .............................................. 83 Case 5 - Person-Environment Fit Score = 0 .............................................. 89 Case 10 - Person-Environment Fit Score = 0 ............................................ 93 Case 13 - Person-Environment Fit Score = 0 ............................................ 97 Case 7 - Person-Environment Fit Score = -2 ............................................. 102 Case 11 - Person-Environment Fit Score = -2 ........................................... 107 Case 17 - Person-Environment Fit Score = -2 ........................................... 1 12 Case 19 - Person-Environment Fit Score = -2 ........................................... 1 17 Case 18 - Person-Environment Fit Score = -3 ........................................... 121 Case 16 - Person-Environment Fit Score = -4 ........................................... 126 CHAPTER ONE INTRODUCTION For any individual, young or old, healthy or disabled, a supportive physical environment can allow independence and the performance of needed tasks. Hiatt (1982) summarized literature suggesting that the environment serves as a releaser of intelligence, giving humans the capacity to master their surroundings. Positive interactions between humans and their environment can elicit intelligent coping behavior with a reduction in frustration and improved life satisfaction (Ittelson, 1975). The congruence between a person’s capabilities and an environment that supports those capabilities is known as person-environment fit (Lawton, 1983). Person-environment fit has fueled a design movement known as the universal design movement; so named by architect, Ron Mace (Neubacher, 1988). Universal design supports construction of all buildings to be accessible for 99% of the population, including the young, the old, the able bodied and the disabled. This concept has slowly become accepted for new commercial buildings and some apartment complexes, as dictated by Barrier-Free Construction Codes. In August 1988, President Reagan signed the update to the Fair Housing Act. One part of the bill requires all newly constructed apartments and condominiums to 1 2 be constructed to be accessible to the old and handicapped by the end of the 1990’s. Existing apartments or condominiums will be required to make structural modifications upon request of the disabled or elderly tenant (Downey, 1988). This legislation will broaden the housing opportunities for these populations. A problem remains, however, with the handicapper accessibility of existing and new single family dwellings. The barrier-free construction codes and the. recent legislation do not apply to these housing units. This is a major issue when 75% of the elderly and disabled populations are owners of single family dwellings. Thirty-six percent (in 1983) owned homes built prior to 1942 and have physical barriers (AARP, 1987). Financial and psychological costs in making housing changes also impede person-environment fit. As one ages or becomes disabled, making physical changes to dwellings can be prohibitively expensive, thus discouraging adapt- ations. Additionally, many handicappers feel the need to be ”normal", and struggle to cope with the existing physical environment rather than change it to ease functioning (N eubacher 1988). These financial and psychological costs are felt by all disabled individuals and many elderly persons including stroke survivors. .‘ Older (over age 5) stroke survivors frequently have physical and psycho- logical adjustrnents with which to cope Many physical limitations are temp- orary, while others remain permanent disabilities. A supportive home environ- ment, both psychologically and physically, could enhance completion of Activities of Daily living (Katz, Ford, Moskowitz, Jackson, Iaffe, Cleveland, 3 1963) for those with permanent limitations. A tailored environment designed to personally fit physical needs can greatly enhance overall life satisfaction. W Assessing environments for a disabled older person for person-environment fit has been tackled in varying dimensions by many researchers (Hiatt, 1982; Kahana, Liang, 8: Felton, 1980; Kiyak 1980; Lawton 1981; Lawton, Moss, Fulcomer & Kleban. 1982; Lawton & N ahemow 1983; Wohlwill, 1974). One avenue not yet explored is the role of caregivers in creating or inhibiting person-environment fit for the persons in their charge. Creating an appropriate fit would serve both patient and caregiver while improving the ability to perform tasks and reduce stress and strain. The purpose of this study is to analyze case studies of elderly (over age 55) stroke survivors and examine characteristics about their caregivers that tend to support or inhibit achievement of person-environment fit. The relationship between person-environment fit and caregiver strain will be assessed. The research is qualitative and exploratory in nature. It reviews ten case studies of older stroke survivors and their caregivers. Since the caregiver’ s role in providing a supportive physical environment is a research concept not yet explored in the person-environment literature, it is hoped that the characteristics of caregivers will provide insights for service providers to effectively promote person-environment fit. RELATIONSHIP OF THIS 51m DY TO MAIOR PROLECT This study involves analysis of data from a larger project entitled, "The 4 Experience of Stroke as a Critical Life Event: Supportive Ecosystems for Older Persons and Their Families, Phase I". The project was funded by the American Association of Retired Persons, Andrus Foundation. The purpose of the study was to develop a more comprehensive knowledge of the older person exper- iencing a stroke, the family response to the stroke and the role supportive eco- systems assume in the enhancement of wellbeing for older persons, their families and society (Ames, Bond, Borland, Chenoweth, 1986). Changes in daily living as a result of stroke were explored for both the stroke survivor and the caregiver. The study also identified needs, adaptations and resources used by the stroke survivor and family. Application of this knowledge would enable older persons, their families, professionals and those who influence public policy to more effectively allocate and use resources to enhance the wellbeing of the individual, family and society. The major study involved a three part series of interviews with 20 stroke survivors, their designated informants and primary caregivers. Stroke survivors were 55 years of age and older, and they had suffered their first stroke or had few residual limitations from a prior stroke. Patients were living in private residences and had left institutional care within 30 days to six months prior to the interview. SIGNIFICANCE OF THE RESEARCH Stroke is the third leading cause of death in the United States. Approx- imately 500,000 Americans suffer strokes each year. In 1985, 152,700 (down from 210,000 in 1974) in the US. (American Heart Association, 1987) and 5,528 (7% of the population) in Michigan died from cerebrovascular disease (stroke) (Mic victi men 1973 oonc Wolt older PQTSC Simil Absu the cc 2000. here Tong hous insut 5 (Michigan Health Statistics, 1987). There are approximately 1,990,000 stroke victims across the country who are alive today. Due to the progressive treat- ment of high blood pressure, deaths from stroke have declined by 50% between 1973 and 1987 (Ubell, 1987). Deaths overall from stroke are becoming more concentrated in the over 65 age bracket, particularly over 85 (Posner, Gorman, Woldow, 1984). The incidence of stroke may be declining, but for those afflicted older persons many disabilities remain. The population of the United States is aging. There were 29.2 million (12.1%) persons over 65 in 1986 (American Association of Retired Persons, 1987). Similarly, Michigan’s over 65 population was 12% in 1986 (Michigan Statistical Abstract, 1987), and the over 85 group is the fastest growing population. Across the country, the over 65 age group is expected to reach 32 million by the year 2000. The number of disabled persons will rise proportionately with the increase in the elderly individuals. Their projected total could reach 10% or roughly 25 million by the year 2000 (Raschko, 1982). Schilling, Combs, and Schwab (1982) project a 15% or 35 million disabled population requiring tailored housing needs or person-environment fit. Of the elderly population, a very small percentage (5%) live in customized institutional housing. Percentages of nursing home residents in Michigan, based upon age, are as follows: 1 % for persons 65-74 years, 6% for those 75-84 years, and 22% for individuals over 85 (AARP, 1987). On the average, older persons in nursing homes live there for five years, and the majority reach financial depletion before the end of the first year (Newman, 1976). The majority of disabled elderly persons live in private homes, with 80% of care being provided by family 6 members (Hirshorn, 1988). Memory loss, dementia or Alzheimers, and loss of bladder or bowel control seem to be conditions that promote nursing home placement. Some of these conditions are not uncommon outcomes of disability due to stroke. It is generally accepted that it is financially more expeditious for public or private insurance agencies to provide support systems for families to care for the disabled elderly in private housing. Unfortunately, the bulk of the housing stock in the United States does not accommodate the needs of disabled individuals. Stairs inside and outside the home, narrow door openings, narrow bathrooms and passageways inhibit person-environment fit for individuals using a walker or wheelchair. Ambulation is a critical problem. The unique component of this study, as compared with other person-environment studies, is the assessment of person—environment fit and the analysis of the caregiver role in creating the fit. With stroke survivors in varying states of physical disability, the patient may not have much input in developing a person-environment fit. It is therefore important to attend to other individuals in the family who interact with the stroke survivor and may ultimately make these environmental decisions. Through identification of caregiver character- istics of those who are encouraging or inhibiting person-environment fit, the information can be shared with service providers for the tailoring of resource materials to address this population. 7 THEORETICAL APPROACH m ECQLOGICAL APPROACH The human ecological(ecosystems) framework provides the foundation for this qualitative family study. The approach explores the interactions and interdependencies of humans and their environments. Through observation of the holistic family system, one can then establish an understanding of the family culture, perceptions, functioning and decision making capabilities. The human ecological approach is based upon the principles of ecology, which is the interrelations of organisms (humans) and their environments (Andrews, Bubolz & Paolucci, 1980; Bubolz, Eicher, Sontag, 1979; Sprout, 1965). The ecosystem framework progressed beyond biological ecology when systems theory and cyberneties were incorporated (Wright 8: Herrin, 1988). It is the openness of the system that allows dynamic interactions between the organism and each of the environments plus interactions between the varying environments. Many environments comprise the ecosystem. Environments include the physical, biological, social, economic, political, aesthetic and structural systems (Bubolz, Eicher, & Sontag, 1979). These have been combined into three major categories: the natural or biological environment, the behavioral or psycho-social environment and the human constructed environment (Morrison, 1974) The environments interact either independently, multidimensionally, or in a uni- directional fashion with the organism. The ecosystem framework allows humans to be examined within their context (W right & Herrin, 1988). Understanding cultural and familial nuances 8 based upon this context lends deeper meaning to qualitative research methodology. - Bubolz and Whiren (1984) applied an ecosystems model to families of the handicapped. The framework identified the human component as the family unit with a systems approach to the flow of resources and energy into and through the system. It noted the impact of stressors on the family unit. Having a handicapped family member was a source of stress requiring intense energy demands and utilization of resources. Demands upon time, psychic energies and continual decision making, among other variables, were family stressors for their study. Caregivers played a key role in the family ecosystem, emphasizing their need to network with all available resources (human and non-human) in order to cope with the care-providing role. Ward, LaGory and Sherman (1988) approached the study of environments for the elderly population from an ecological perspective. They indicated that in order to fully understand the relationship of the aging individual and the housing environment, one must view it from a contextual perspective. The relationships are multifaceted and complex. Understanding the concept of environmental satisfaction, for example, requires analysis of ecological, biolog- ical, psychological and social components. The environment is symbolically constructed and involves continual interpretation, since it is a mental construct in addition to being a physical reality. The older person’s meaning of home varies from individual to individual. The impact the environment makes on the individual is unique to that individual. Contextual interpretation requires exploration of all interconnecting environments. . An ecological model will be used for this study of stroke survivors, 9 caregivers and person-environment fit. The model includes the stroke survivor’ s phySical health and abilities to perform Activities of Daily Living, and the interaction and interdependency with the human behavioral environment (the caregiver) and the human constructed environment (aids/ devices and the home setting) to achieve optimum fit. Figure 1 illustrates the ecosystem relationship of human to environments. Natural Environment Community Environment: Services Human Behavioral Environment: Caregiver STROKE SURVIVOR: Physical Health Activities of Daily Human Constructed Environment: Aids/Devices Housing Figure 1: Stroke Survivor’ 5 Ecological Model 10 ELFflQN—ENVIRONMENT FIT The human ecological model encompasses the human and its interaction and interdependencies with the environment. Person-Environment Fit theory similarly addresses both the human component and the environment, focusing on the fit between the two. Lewin (1935) first theorized about person-environ- ment fit but concentrated on the interpersonal environment. He developed the formula B = f(P-E), meaning that behavior is a function of the person-environment fit. Expanding this concept to the physical environment, Lawton and N ahemow (1973) observed that the level of human competence paired with the appropriate amount of environmental press would result in adaptive behavior or culturally appropriate behavior given the situation. A mismatch 'would render maladap- tive behavior or the inability to perform the appropriate behavior or task. Human competence included the individual’s physical and psychological capabilities. Environmental press involved the social, psychological, behavioral, natural and human constructed environments; which is consistent with Lewin’s concept and the Human Ecological perspective. Person-environment fit theory has been applied to housing for the elderly (Altman, Lawton 8: Wohlwill, 1984; Hiatt, 1982;Kahana, Liang & Felton, 1980; Kiyak, 1980; Lawton, 1980, 1981, 1982, 1983; Lawton, Greenbaum &: Leibowitz, 1980; Lawton, Moss, Fulcomer & Kleban, 1982; Rowles & Ohta, 1983). The literature hypothesized the application of person-environment fit theory to private residences (Lawton, 1980,1981, 1982, 1983). However, most of the research focuses on varying housing types for the elderly (eg. nursing homes, age 11 congregated housing or apartment complexes for independent living) (Kahana, Liang a: Felton, 1980; Kiyak, 1980). A Multilevel Assessment Instrument (MAI) was developed to assess person—environment fit for 590 elderly persons either living independently in the community, receiving in-home services, or awaiting admission to a nursing home (Lawton, Moss, Fulcomer 8r Kleban, 1982). The instrument measured physical health, cognition, Activities of Daily Living, time use, social interaction, psychological well-being, family economics, and perceptions of the physical environment. Variables addressing the physical environment focused on perceptions of housing quality, neighborhood quality and personal security. The older person’s perceptions of these items were compared with those of the interviewer to assess person-environment fit. The objective environment (eg. plumbing, steps, grab bars) was originally included in the study, but abandoned because of the difficulties in scaling relevant components. The researchers acknowledged the importance of the objective environment for overall wellbeing of the elderly individual. Delong and Branch (1982) developed a research model for predicting a stroke patient’ 5 ability to live independently. The model was based on the following equation: 0 = f(S,D,E.I). Components of the model incorporate: O for independ- ent living outcome; S for socio-demographic characteristics of the stroke patient; D for disability related variables; E for environmental barriers; and I for an interface variable indicating the use of assistive devices, such as a wheelchair, to bridge the gap between functional limitations and environmental barriers. The study analyzed data from medical center computer files for 84 stroke patients. 12 Findings identified variables that could explain 56-80 percent of the variance in a patient’ 5 ability to live independently. These variables were: marital status, age, Bartel score, communication impairments and ability to drive. The components of their formula lent insight into the factors used in this study for measuring person-environment fit. Parr (1980) developed a person-environmental interaction model. The basic assumption asserts that behavior in environments is the primary interest of both theoreticians and practitioners. Complex systems can be explored by selecting behaviors or functions and noting environmental interaction. His theory identifies person characteristics, environmental characteristics and mediators of behavior. The mediator of behavior can be a person. In the case of stroke survivors, their caregivers can be the mediators of behavior. For this study, many components will comprise the person-environment fit model. These components are stroke survivor pre and post stroke physical characteristics, their ability to perform Activities of Daily living, physical environmental changes, and the mediator role of the caregiver for enhancing or detracting from person-environment fit. Each of these component variables are defined in the Methodology Chapter (Chapter 3), and their path of interaction is illustrated in Figure 2. 13 HUMAN HUMAN CONSTRUCTED ENVIRONMENT Pre-Stroke Aids/Devices Physucal Health _._.___-_._. 7 .. A Post-Stroke HUMAN l SOUS"? I Physical BEHAVIORAL °" "'°" Health ENVIRONMENT Caregiver Physical Activities of __ Daily Living I Person-Environment Fit : Figure 2: Factors Comprising Person-Environment Fit STUDY LIMITATIONS Since person-environment fit is an individualized proposition, the general- ization of this study to all disabled, elderly, stroke survivors is 1imited.Add- itionally, qualitative studies provide rich in-depth content, but the limited sample size (n=10) prevents statistical testing of the significance of caregiver characteristics and person-environment fit. However, the sharing of this case sludy pic provider and they. 0th Questic needed could t it scat the ex} Li: tespm Study event lance Plus “25p. tend lesp Whit and elm 00m: e"PL 14 study process and assessment of person-environment fit would benefit service providers in performing similar tasks for both patients with varying disabilities and their families. Other research format limitations include the use of secondary data. Questions from one study do not always address the required information needed for another study that has a different purpose. Additional questions could have been added to create a more in depth five point person-environment fit scale versus the three point scale, used for this analysis, that was created from the existing survey instruments. Limitations of the original data include the sample selection and interview responses. The stroke survivors and families agreed to be interviewed for the study, which may in itself indicate a level of coping with stroke as a critical life event. Persons who refused to be interviewed may have had different exper- iences to report. Information gathered from the interviews included objective plus open-ended reporting and interviewer observations. Reporting by the respondents may have been minimalized or exaggerated. At times inconsis- tencies could be found in the data between objective questions and open ended responses. Additionally, some questions required retrospective reporting, which sometimes can be influenced by memory capabilities of both the younger and older respondents. Interviewer observations, of such things as the housing environment, also may vary in detail from interviewer to interviewer. A complete description of the research procedures used for the major study is explained in the Methodology Chapter (Chapter 3). folk stud let a CHAPTER TWO REVIEWOF LITERATURE The review of literature chapter will cover relevant documentation for the following topics: the components of the person- environment fit scale for this study (physical pre and post stroke characteristics, Activities of Daily Living, use of aids or devices, physical characteristics of the housing environment), and characteristics about caregivers. Caregiver preparedness, help-seeking behav- ior and Caregiver Strain Index also will be covered. literature relative to the theoretical framework of ecosystem theory and person-environment fit theory was addressed in Chapter One. COMQNENTS QF PERSON-ENVIRONMENT FIT SCALE FOR THIS STUDY STR KE Cerebrovascular Accident (CVA or stroke) has been defined as a disruption of the blood supply to any portion of the brain (National Stroke Association, 1988). Strokes are the third leading cause of death in the United States (American Heart Association, 1987), even though deaths have dropped by 50% between 1973 and 1987 (Ubell, 1987). Although usually considered an afflic- tion of the over 65 age group, stroke can take place at any age. In fact, one in seven deaths from stroke affect persons under age 65. Approximately 500,000 15 persons victims can He theUr Barry, years is Sim incea greatt Embc Comm thEax 16 persons suffer strokes annually, and almost two million Americans are living victims of stroke. In 1985, 152,700 deaths were contributed to stroke (Ameri- can Heart Association, 1987). Stroke is the leading cause of adult disability in the United States (Ford 8r Katz, 1965; National Stroke Association, 1988). The average age of onset for stroke is 60 years (Finnery Fried, Myers 8: Barry, 1986). The average age for stroke survivors at the time of stroke was 71 years for men and 74.6 years for women. Over age 85, the incidence of stroke is similar for the two genders, and prognosis for mortality from stroke increases with age (Ford 8: Katz, 1965). Below age 70 the incidence of stroke is greater among men than women (Ford 8: Katz, 1965). The three types of stroke include Thrombotic Stroke (cerebral thrombosis), Embolic Stroke and Hemmorrhagic Stroke. Thrombotic Stroke is the most common type of stroke and occurs when blood supply is blocked in a cerebral artery by a clot. Thickening of the arteries (atherosclerosis) frequently narrows the artery passages to the point where the blood supply tends to form clots, thus closing off the passageway. About one quarter of patients who survive a thrombotic stroke experience a recurrence within the next five years (Ford 8: Katz, 1965). Embolic Stroke occurs when a clot originating from another source in the body other than the brain dislodges and is carried in the blood stream to the brain. When the small vessels no longer will allow the clot to pass through, it plugs off the blood supply. This blockage is known as an embolism. An embolism may reoccur twice as frequently as thrombosis (Ford 8: Katz, 1965). Hemorrhagic Stroke occurs when a cerebral vessel breaks, leaking blood into brain tissue or areas surrounding the brain. Vessels can 17 break if there is a weakened portion strained by degeneration of artery walls, hypertension, high blood pressure, head injury, or a bulge in the artery wall, known as an aneurysm (American Heart Association, 1987; Lavin, 1985; National Stroke Association, 1988; Posner, Gorman 8r Woldow, 1984; Stolov 8t Clowers, 1981 ). PRE-STROKE HEALTH Persons noted to be at greater risk of suffering a stroke frequently suffer . from coronary disease, congestive heart failure, hypertension, high blood pressure, or may have experienced minor, intermediate stroke episodes (Ford 8: Katz, 1965). Atherosclerosis (hardening of the arteries) is frequently present, and individuals with diabetes also are at risk. Other common pre- stroke physical conditions may include high cholesterol levels, other fats present in the blood stream, heart irregularities, blood clot disorders, gout and heavy smoking (American Heart Association, 1987). SYMPTOMS OF STROKE Warning signs of an oncoming stroke may vary in type, strength and duration. Sudden weakness or numbness in the side of the face, arm or leg are indicative of lack of blood flow in the brain. Other symptoms may include: sudden headache, blurred vision, loss of speech or difficulty in speaking or ' understanding the spoken word; difficulty swallowing; sudden personality, emotional or cognitive changes; or changes in level of consciousness. Dizzi- ness and unsteadiness also may occur. Many .of these symptoms may be short in duration (several minutes to several hours). If recovery occurs within 24 hours, then a mini-stroke or transient ischemic attack (TIA) may have taken 18 place. Four out of five sufferers of Thrombotic Stroke have histories of TIA’s (National Stroke Association, 1988). W Prognosis following the stroke can include death or some level of complete or partial ftmctional recovery. Mortality rates, within the first week following a major stroke, can range from 25-50% (Ford 8: Katz, 1965). During the first month of recovery, a sizable group of survivors recover to the point of indepen- dent walking and self-care, while a large middle group still require minimal to moderate assistance, and a small group continue to require complete nursing assistance. Mortality for those who survive the initial stroke is 7-35% in the ' first year, 17-42% by the second year and 38-66% at the end of year five (Ford 8: Katz, 1965). The leading cause of death among stroke survivors is the recur- rence of stroke. There are a number of conditions associated with the stroke that point toward a higher probability for mortality. Ford and Katz (1965) observed that patients who enter the hospital in a coma have a mortality rate between 72- 81%. Bilateral paralysis or a mid-brain lesion plus blood present in the spinal fluid are conditions associated with an over 80% mortality. Continued or pro- gressive edema or hemorrhage may lead to herniation of the brain. This situation shows signs of deterioration of the patient’ 5 condition during the first few days following the stroke, which also is more likely to indicate future mortality. Some survivors have an "active” condition with multiple episodes, while others experience only a single (mild or severe) stroke. Prognosis did not seem to vary between singular or multiple strokes, but it was influenced by 19 the type of stroke and its residual conditions. S'TR KE CAL CONDITTONS Physical damage from the stroke and related disabilities are directly associated with the location of the Cerebrovascular Accident in the brain. It usually occurs in one or the other (right or left) hemisphere of the brain. Degree and severity of damage depends upon the scope of the brain cell injury and the portions of body functioning controlled by the affected brain cells. Persons suffering a stroke on the right side of the brain may experience the following conditions: ”- Paralysis on the left side of the body (left hemiplegia) - Excessive talking (verbalization) - Short attention span (high distractibility) - Memory problems - Poor judgment, especially related to safety awareness (typically an overestimation of physical abilities) - Time disorientation - Loss of left visual field (left hernianopsia) - Unconscious neglect of left limbs and environment - Impaired abstract thinking (concrete thinking predominates) - Brief and spontaneous emotional highs and lows (lability) - Lack of interest and motivation (lethargy) - Acting without thinking (impulsivenessY’ (National Stroke Association, 1988:2-3) When the stroke takes place on the left side of the brain, the following damage may occur: ”— Paralysis on the right side of the body (right hemiplegia/ hemi- paresis) - Partial or complete loss of language (dysphasia or aphasia) - Impaired thought processes (information-processing delays) - Impaired voluntary motion (apraxia) - Confusion between left and right ' - Loss of right visual field (right hernianopsia) - Easy frustration - Compulsiveness or slowness" (National Stroke Association, 1988:3) 20 Damage to the brainstem where human survival functions are controlled may cause: coma, unstable vital signs, nausea and vomiting, impaired swallowing and paralysis on both sides of the body. Damage to the cerebellum which controls coordination and balance, may cause abnormal reflexes, balance prob- lems, dizziness, nausea and vomiting (National Stroke Association, 1988). Wade, Skilbeck, Wood and Hewer (1984) explOred predictive variables for long term survival after stroke. Three factors gave the most predictive value for determining patient survival for 107 stroke patients two years after the stroke. These factors were severity of the stroke as identified by the indivi- dual’s ability to walk soon after the stroke; the presence of pre-existing cardio- vascular disease, and the patient’ 5 age. If walking recovery did not occur during the first 18 months after stroke, the probability of later recovery was less than one in 20 (Ford 8r Katz, 1965). Considering the relationship of walking and long term survival and the environmental changes required to support this disability, person-environment fit for this study will focus on ambulation. ACTIVITIES OF DAILY LIVING Since the early 1960’s, Katz and colleagues (1961, 1963, 1969, 1970), develop- ed and refined a measure of biological and psycho- social functioning for older persons. They categorized normal every day tasks of life into an index known as the Index of Independence of Activities of Daily living. After evaluating thousands of activities for the elderly and chronically ill patients, two classifications, Physical and Instrumental, were created for the activities. Physical Activities of Daily Living focused on six basic functions: C0 in. of ; Gn ate the dime . 21 bathing, dressing, going to the toilet, transferring in and out of bed, continence and feeding. The older person's ability to function independently or depend- ently became a summative evaluation based upon seven degrees of independ- ence. The summative rating was used for a variety of purposes. Similar to assessing a child’s level of development for physical and learned or cultural behaviors, an older person’s assessment could determine level of functioning and hence level of need for assistance (Katz, Ford, Moskowitz, Jackson, Iaffe 8: Cleveland, 1963). An individual’s rating immediately following an injury could be compared with one taken after a period of recuperation, thus noting progress or decline in functioning. The Instrumental Activities of Daily Living assessed a different level of culturally defined behaviors beyond basic functioning. The seven items identified as Instrumental Activities of Daily Living include the following: using a telephone, driving, using public transportation, shopping for groceries or clothes, preparing meals, doing light housework (dusting, washing dishes) or heavy housework (vacuuming, scrubbing floors). Assessment of functioning could determine need for assistive services for an older and/ or disabled individual. The Activities of Daily Living Index was used as a predictive factor for level of functioning that was corroborated two years later (Katz, Downs, Cash 8: Grotz, 1970). Using this instrument to measure the level of functioning can be accomplished in an objective fashion with this scale. Rerneasurement over time can chart changes due to illness or aging. The OARS Instrument (Multi- dimensional Functional Assessments: The OARS Methodology, 1978) has used st; ab tie in. (We lien the. 22 the Activities of Daily Living as one component level of functioning for comparison with other physical and psychosocial characteristics for older persons. F R D F R AMB TT N Equipment or aids are commonly used to assist with ambulation following a stroke. Most often these aids include canes, walkers, quadropods or tripods, crutches, or wheelchairs. Aids are either rented or purchased. Expenses incurred when obtaining the equipment may be reimbursable by insurance companies and Medicare if it fits the following requirements: ”(1) the equip- ment must meet the definition of durable medical equipment (durable to with- stand repeated medical related use); (2) the equipment is necessary and reason- able for the treatment of the patient’ 5 illness or injury for improving the func- tioning of a malformed body member (with physician’s diagnosis, prognosis, and prescription for the aid); and (3) equipment is used in the patient’ 3 home” (American Occupational Therapy Medical Handbook, 1984). Examples of reimbursable durable equipment, other than the mentioned aids used for ambulation, include: hospital beds, bedpans, bedside railings, commodes, lifts or trapeze bars. Items not reimbursable by insurance or Medi- care, would be grab bars, raised toilet seats, bedside tables or trays that reach over hospital beds. These devices are considered convenience or self-help items that are not medically necessary or primarily medical in nature, and therefore not reimbursable according to Medicare The government publication, Technology and Agm‘ g America (Office of Technology Assessment, 1985), addressed the issues of inadequate marketing pr dc Ur Tet wit role I‘vh ins that of 0 mt Dev W011 Dumb 23 and knowledge of available aids and devices used to ease daily activities. Hiatt (1982) agreed that technology was an underdeveloped component of the phy- sical environment for older people. The lack of financial resources from all public and private sources to fund technology (aids, devices) has been a major problem for years, and does not look promising for the future unless private donations increase Donations would fund service organizations, like the United Way, who rent or purchase equipment for needy families. Technologies for caregivers also had received little publicity (Office of Technology Assessment, 1985). long term care has long been labor intensive with limited emphasis on technology. Persons typically performing caregiving roles (other than family members) have been classed with limited education, limited train- ing, limited professional identity or prestige with low income. When caregiving techniques are mastered, they are usually unrewarded, offer- ing little encouragement to share these techniques with others. Technologies that would physically assist the caregiver are critical for the self preservation of their own physical being. Devices to allow the patient to independently ambulate would prevent the caregiver from excessive pushing or pulling. Devicesforliftingand transferring thepatientfromchair tobedorchairtotub would save the caregiver’ 3 back and related muscle strain. Finding the correct aid can be a challenging endeavor. ABLEDATA is a computerized listing by the National Rehabilitation Information Center of more than 12,000 commercially available products (Jensen, 1987). An 800 phone number can connect professionals and family members with an information specialist who would send a printout of potential aids or devices, the product de pl; ac git ex] [:9 24 description, price and source for purchase or rental. The service is free to the public and subsidized by private donations. A more critical issue than knowledge, access, availability or financing of aids or devices, is the psychological refusal to use aids (Demarest, 1984). For some individuals, using an aid is a sign of giving in and not being able to handle the environment independently. These individuals expend more time and energy in the struggle to get to the activity than in the enjoyment of the activity. Promoting the use of devices can be especially challenging for a care- giver when the stroke survivor may have cognitive and emotional impairments in addition to physical limitations (National Stroke Association, 1988). Numerous aids and devices have been created for use by stroke survivors. The issues impacting upon usage include: awareness, availability, accessibility, expense, qualification for a medical tax deduction, patient and caregivers psychological readiness to use the aid or device. mixAL CHARAQIIflITCS OF THE HOUSING ENVIRONMENT The physical environment is only one of many environments impacting upon the stroke survivor. It, however, plays a critical role as a support for independent functioning or dependence upon others providing services. Hiatt (1982) argued that the physical environment has long been an untapped resource in dealing with the basic needs of older persons. In health care set- tings, many staff members and administrators considered good staff capable of overcoming deficiencies in the environment. The staff served as a bridge bet- ween the patient’ 3 disability and functioning within the environment. This 25 certainly has been the pattern in health care settings as well as in-home set- tings. Newman (1985) sited research that observed the relationship between features of the physical dwelling impacting on service delivery to elderly relatives. Environmental barriers were stimulating feelings of stress among family caregivers. Unfortunately this among other issues, has lead to rapid staff turnover and caregiver burnout. The physical environment can be a part of a team approach to health care systems (Hiatt, 1982; Lavin, 1985). The physical environment’ 5 impact on the health of older persons includes the following: enhancing mobility and access to activities (Hiatt, 1982; Lifchez, 1979); acceleration of impairments such as sensory deprivation (Hiatt, 1982; Lawton, 1983; Wohlwill, 1974) or increased probability for falls (Carp, 1977; Raschko, 1982); plus serving as a tool for cognitive capabilities (Hiatt, 1982). Cognitive development comes from learning lessons through the mani- pulation of the environment. These lessons can be negative, causing frustra- tions and depression, when the environment does not enable one to accomplish the intended task, whether it be hanging up a coat or washing dishes. Carp (1977) observed that the environment enhanced physical health in older persons when viewed as a coping mechanism. Coping was facilitated by an appropriate environment; one that provided ease in functioning with minimal use of energy. Stress was created by an inappropriate environment or one with barriers to functioning, which made the individual expend an excessive amount of physical energy. There has long been a debate over the need for specialized housing as an 26 appropriate environment versus continued in-home residence for older persons. Moos (1980) developed a conceptual framework for the evaluation and creation of specialized housing for older persons. These specialized settings included: skilled nursing facilities, board and care homes, congregate housing, foster care settings and single room occupancy housing (I-Ieumann 8: Lareau, 1979-80; Lawton, 1981; Lawton, Greenbaum, Leibowitz, 1980; M005, 1980; Newcomer, Lawton, Byerts, 1988). The elderly population could certain- ly benefit from many custom design features, particularly when the older person has a cognitive impairment or is incontinent. Incontinence frequently plays a pivotal role in the decision for placement of a family member in a nursing facility (Office of Technology Assessment, 1985). It is estimated that $8 billion is spent on incontinence in the United States annually. In nursing homes alone, costs associated with incontinence consume 8% of the annual budget (Office of Technology Assessment, 1985). Smallegan’s (1983) study of families’ decisions for nursing home placement, identified the following causes precipitating admission: frequent falls, general debility, confusion, fractures, strokes, incontinence and difficult behaviors. 6 Due to the rapid growth of the elderly and disabled populations, the demand for specialized housing greatly exceeds the supply. Thus housing options need to balance between existing single family housing stock and specialized settings (Altman, Lawton, Wohlwill, 1984; Heumann 8: Lareau, 1979-80; Newcomer, Lawton, Byerts, 1988). The existing housing situation, among other factors, determines the motivation for remaining in that setting, seeking alternatives, or making changes. 27 Newman (1976) reported findings from a national study of older persons indicating housing changes to be linked to the onset of disability. With severe disability came a move to a nursing facility or to the home of a relative for over 70% of the sample of 555 disabled elderly. A less likely move, but one that occurred none the less, was one in which another family member moved into the home of the disabled person. A move was additionally dependent upon whether there was a living spouse and upon the sex of the disabled person. If the male was disabled and married, more than likely the wife continued to care for the spouse in the home. If the wife was disabled, the male was less likely to care for the spouse, and a consequent housing change was more likely to be considered. Fillenbaum and Wallman (1984) supported these residential considerations with their study of household composition and the elderly population. Residential rearrangements were dependent upon marital status, health of spouse, and extent of help available from family and friends. Housing satisfaction with the existing setting also played a role in residential considerations. Housing satisfaction for the elderly and disabled populations has been addressed in the literature (Perch, 1983,; Golant, 1982; Weaver 8: Ford, 1988). Housing satisfaction is a multifaceted concept that includes such components as: housing quality, ownership factors, income, neighborhood characteristics life satisfaction, leisure activities, health and other soda-demographic charact- eristics (Perch, 1983; Golant, 1982). Golant (1982) reported that older persons were more satisfied with their housing if they were less interested in novel environments, were happier with their lives overall; traveled less frequently 28 away from their homes; and had lived in their dwelling for a long period of time (psychological attachment). Housing satisfaction also was associated with home ownership and having few financial difficulties. Life for a less mobile individual frequently revolves around his/ her home environment and the treasures therein. Many older individuals spend as much as 80-90 percent of their time in their homes (Montgomery, 1972). Long term memories and attachment to this prized possession make environmental changes a painful decision-making process. Perch (1983) provided research of housing satisfaction for households with and without disabled family members. Households with disabled members were as satisfied with their housing as their counterparts, even though these households had less desirable housing conditions. He speculated that funds should be provided for repairing and improving the disabled person’s existing housing, rather than building specialized units, since housing satisfaction was high. P ICALCHANG TOTHEH ME FACILITATEAMB TT N General construction codes for private housing deal with safety issues for materials and their installation. Codes do not address standards for handicap- per accessibility of private dwellings. Barrier-free guidelines for handicapper accessibility have been defined in the construction codes for commercial buildings and 34% of apartment units within a new apartment complex (in Michigan based upon the Michigan Barrier Free Construction Codes, 1987; or 1 % of apartments built elsewhere in the country to the American National Standard Codes, 1980). Numerousauthors have applied these guidelines to private housing (Colvin 8: Korn, 1984; Costa 8: Sweet, 1976; Demarest, 1984; Hyman, 1982; Jones, 1980; Penton, 1979; Raschko, 1982; Steinfeld, 1980; Troop, 1981; Wittrneyer 8: Stolov, 1978). The Architecture and Transportation Barriers Compliance Board of the United States Congress (1977) developed an extensive literature review of resources concerning barrier-free environments. The National Stroke Association (1988) also has published environmental changes. to assist stroke survivors. These guidelines, however, are not as generous as the Michigan codes, and should be used with caution. General housing design that encourages ambulation includes: ease of entrance from the exterior without stairs; rooms on one floor; space to turn around when using a walker, crutches or a wheelchair; and door openings wide enough to accommodate a wheelchair. Other housing considerations incorporate kitchen and bathroom redesign for wheelchair usage; strategic placement of grab bars; lifts or elevating devices between floors of the home or for exterior steps. Removal of excessive furnishings to allow maneuvering through the rooms, and the use of low pile carpeting or hard surface flooring to ease ambulation are additional design concerns. . The Michigan Barrier-Free Construction Codes (1987) specify, among other requirements, standards for ramp construction; spacing for wheelchair turning radius; minimum door opening; placement of switches and outlets; placement of grab bars and plumbing fixtures, plus kitchen and bathroom cabinets. Recommendations for ramp construction should provide a minimum 1:12 ratio; A 30 meaning, for every one inch of rise there should be 12 inches of run. A ratio of 1:20 would provide a very subtle rise on which an elderly person could easily self manipulate a wheelchair. The National Stroke Association recommended a 1:8 ratio, which is steeper than the 1:12 ratio for code. The space required to make a 360 degree circle with a wheelchair is five feet by five feet. This spacing should be provided in a foyer, living room, kitchen, bathroom, and bedroom. Guidelines for door openings should have a mini- mum of 32 inches of clear passageway (the National Stroke Association, 1988, recommended 29 inches). Thirty-six inches provides ease of passage through a door opening without bruised elbows (Raschko, 1982). Placement of the swing of the door is a critical design decision in order to save wasted time and energy maneuvering around doors with a wheelchair. Barrier-free bathroom doors should swing out and not into the bathroom, again for ease of maneuverability. Electrical requirements for outlets and switches should meet the needs of the older person. Recommendations for the height of electrical outlets range from 18 inches (Michigan Barrier-Free Construction Code, 1987) to 27 inches from the floor (Raschko, 1982) and are spaced every eight feet. light switches should be mounted 36 inches on center, and preferably be of the toggle variety. Motion, auditory or thermal sensing devices can be obtained for controlling light fixtures. film ENVIRQNMENTAL CONSIDERATTQNS Other environmental considerations deal with. concerns for safety plus particularistic needs of the given disability (Carroll 8: Gray, 1986; Kenny 8: Spicer, 1984; Liang, Gall, Partridge 8: Eaton, 1983; National Stroke Association, 31 1988; Ramsey, 1985; Raschko, 1982). Safety considerations apply to all in- dividuals, not only the elderly or handicapper populations. One of the easiest safety measures is the removal of throw rugs or plastic runners to prevent falls. The National Stroke Association (1988) recommends the use of plastic runners, but frequently the sides of the runners curl up and create a hazard as one transfers from carpeting to runner. Providing a smooth transition between flooring types (eg. tiled flooring to carpeting or resilient flooring) also can prevent falls. Electrical and telephone cords should be secured to avoid tripping over them. Other safety measures include the replacement of frayed cords on older appliances that many elderly individuals continue to use. Stairways should be in good repair with reinforced railings. Color contrast should be introduced on steps, between walls and flooring, counters and flooring, or between furni- ture and flooring to assist with loss of depth perception that is common among older persons. Overall improvement of lighting with reduction of glare is a must for older eyes. Persons in their late 70’s require three times as much light to perform the same task as teenage eyes (Hiatt, 1982). Glare is exaggerated for older eyes; so merely increasing light levels without controlling for glare can cause more harm than good. Improved lighting is the single most important intervention for reducing falls and home accidents (Laing, Gall, Partidge 8: Eaton, 1983). One may want to avoid glass items in interior furnishings. Glass doors by the shower or bathtub may be broken if one is unsteady. Glass top tables should be removed from seating areas to prevent severe injuries should the 32 stroke survivor fall onto them. Furniture for sitting should to be strong, have arms, and be of substantial weight to support the weight of the stroke survivor in getting up or down. Seat heights may need to be elevated to 20 inches by providing additional firm pad- ding or by securing blocks under the feet of the chair. This will prevent the problem of not being able to get up and out of low seating. Similarly, toilet seats can be elevated to 19 inches with extenders. Bathroom accommodations can be extensive for a wheelchair user. A lower sink is required for ease of reaching the faucets and into the bowl. Plumbing pipes should be insulated under the sink to prevent scalding of legs. Lever faucets facilitate control for persons with dexterity problems. A mirror that is full length or tilted downward, if over a sink, provides visual accessibility. Roll-in shower stalls make bathing easier for the wheelchair user and the caregiver. Tubs sometimes cause problems with transfers, requiring physical strain for the caregiver or the use of a hoyer lift. Grab bars are a must in the tub and shower area, as well as by the toilet and sink The Michigan Barrier-Free Construction Code (1987) specifies mounting height and positioning requirements for grab bars. Grab bars need to be installed on reinforced walls or they may not withstand the dead weight of someone whose limbs are impaired. Towel bars and toilet paper holders frequently are used as grab bars. Since they are not installed on a reinforced wall, they often pull out of the wall, leaving holes in the drywall or plaster that are difficult to repair. Bedrooms need to be on the first floor for ease of accessibility. This sometimes means the conversion of a living room, dining room, or family room 33 to a bedroom environment. A bathroom should be readily available from the sleeping area. Most bathrooms in private homes are not accessible for a wheel- chair user, and they barely provide enough room for an older person to have assistance from a caregiver. The lack of space for maneuvering in a bathroom frequently encourages the use of bedside commodes and sponge bathing in the sleeping area. If this sleeping area is in a living room, dining room or family room, this could lead to concerns about privacy. Bedroom areas should have telephone access and an emergency buzzer or intercom system to enhance communication. Bed height may be a problem for wheelchair transfers or getting up and down for someone who is more mobile. The National Stroke Association (1988) points out that if the bed is high, it is easier to sit down and stand up from the edge without assistance. If too high, feet dangling to the floor may not provide a steady start when standing up. Beds that are too low, however, are harder on weak legs for raising and lower- ing oneself. Twenty-two to 24” is a good height for the bed. It is important to stabilize the bed close to a wall or lock the wheels of a hospital bed, so it will not move while one gets in and out of it. Kitchens can be modified to accommodate a wheelchair or to accommodate someone who wants to sit to rest while preparing a meal. Base and wall cabinets can be lowered to meet reaching requirements from a sitting position (Michigan Barrier-Free Construction Code, 1987). Space underneath a cook top and sink area should be provided for wheeling up to and under these areas. Plumbing pipes should be insulated to prevent scalding of the legs. The following appliance specifications ease problems with reaching: side by side 34 refrigerator and freezer, side opening oven and microwave, and range controls on the side or front with overhead mirror to enable seeing into pots. The work triangle between appliances should range from 9-15 feet. This would reduce fatigue from transferring items from refrigerator to sink to range to the table. As circulation problems arise for the older individual, controlling interior room temperature is important (Hiatt, 1982). Increased sensitivity to both hot and cold temperatures is not uncommon for stroke survivors. . Raising the thermostat or utilizing air conditioning are the most common solutions to temperature changes. With this usually follows increased utility bills, which can be problematic for fixed incomes. Numerous energy conserving measures could be applied to the home. Additional housing characteristics that may trigger an older person to live with adult children were observed by Newman (1976). The number of rooms in the house overall, plus the number of bedrooms were important predictors of changing living arrangements. An older person was more likely to live with an adult child if the adult child’s house had six or more rooms and three or more bedrooms. Additional predictors of this intergenerational setting were the low ratios of persons to rooms plus the spaciousness of the home to accom- modate another person. Most of these parents enjoyed the privacy of a sep- arate bedroom. Only 10% of the over 500 elderly persons surveyed shared a bedroom with someone other than a spouse when living with an adult child. In summary, housing changes require research, planning and financial commitment. Many elderly individuals and their caregivers are not able to take on this commitment, which results in their living with the existing 35 situation. In Simos’ (1973) study of adult children and aging parents, housing was identified as a problem area in all but five out of 50 case studies. Trieschmann (1987) stressed that the environment has always impacted on the quality and quantity of life for a disabled individual. As one ages and becomes weaker with declining energy levels, one becomes more vulnerable to the impact of the environment. Environmental changes are imperative to enhancing life satisfaction. MMR CHARACTERISTICS From the onset of the industrial revolution, there have been concerns that families, spread throughout the country in search of employment, would lose emotional attachment and abandon their filial responsibilities to the elderly (Brody, 1985). Springer 8: Brubaker (1984) cited literature that dispelled this myth of family abandonment. Eighty to ninety percent of medically related care, personal care, household maintenance, transportation, shopping assist- ance and emotional support come from family members (Brody, 1986). Not only are family members providing care, but those in their charge prefer family versus nonfamily sources of caregiving (Sander 8: Seelbach, 1981). Desire for families to serve as a primary source of care was found to be independent of age, gender, education and marital status. Streib and Beck (1980) reviewed a decade of family literature including family networking and care providing. The family unit has long been the source of nurturing, both within the generation and intergenerationally. The kin family network has successfully prevailed into contemporary industrialized 36 societies. Strong relational bonds have transcended the physical distances that may separate family members. In a study of caregivers (Shanas, 1980), social and psychological support were found to be more important to closeness of relationships than geographic distance. Overall, the family's involvement with caregiving has been extensive, both intergenerationally and within marital diads. Families continue to provide physical and emotional support as family members age. CAREGNER DEMOGRAPHICS RELATIONSHIP TO PATIENT Spouses provide tremendous support for each other as they age. Springer 8: Brubaker (1984) noted that if the disabled person’s spouse was living, he or she would usually serve as the primary caregiver.) Seventy percent of older men and 36% of older women are married and living with their spouses in an independent setting (Atchley, 1988). This is more than half of the older pop- ulation. More younger persons in the over 65 age group are married than their older counterparts. Remarriage, particularly for older males, is not an uncom- mon phenomenon considering the larger population of available spouses (Atchley, 1988; Vinick, 1978). Since the caregiving role was a strong part of the socialization of females for this generation, elderly wives tend to continue providing care for their _ husbands, as long as their health remains good (Newman, 1976). Females are usually younger than their husbands and live longer and therefore, generally are able to provide these services (Springer 8: Brubaker, 1984). Elderly spouses may be readily available to provide care, but this role can be very difficult for 37 the caregiver. Horowitz and Shindelman (1983) reported that spouses who provided care experienced more stress than other family member caregivers. Male spouses did not provide as much reciprocal care for their disabled wives and turned to adult children or community sources of service including nursing home facilities for support (Newman, 1976). If older persons are living alone, which includes approximately 40% of the older females and 15% of the older males (Silverman, 1987), or if both parents . are ill, then caregiving responsibilities are frequently carried out by adult children (Springer 8: Brubaker, 1984). Typically the daughter or daughter-in- law takes on more responsibilities for providing or coordinating care than the son or son-in-law (Silverman, 1987). Additionally, Stoller (1983) found that daughters provided more actual hours of assistance to parents than did sons. Wake and Sporakowski (1972) observed that youngest daughters were most likely to support parental needs. Silverman (1987) indicated that daughters were caring for more mothers than fathers, and the gender difference may be attributed to a stronger mother—daughter bond than mother-son bond. Johnson (1983) researched family support patterns among 167 posthospital- ized elderly individuals. The goal of the study was to determine if care was provided by the family as a unit or by one individual, whether it be the spouse or adult child. Findings indicated that the caregiver was one person rather a team approach of many part-time caregivers. His study reported differences between the care provided by a spouse and that provided by an adult child. Attitudinal differences were observed, with adult children being more likely to report conflict and ambivalence in assuming caregiving duties. The conflicts 38 could arise from the multiple roles the adult child must juggle, or from emo- tional conflicts carried from childhood into adulthood. Horowitz and Shindelman (1983) reported on the influence of affection and reciprocity on caregiving behavior. Caregivers provided care with or without affection for those in their charge. However, prior affection without past inter- personal conflict strengthened the bonds during this time of caregiving. If caregivers felt that the relative had greatly contributed to their life in the past, then reciprocation made the caregiving less stressful. Jarrett (1985) observed kinship obligation, as a part of reciprocity, to be a stronger motivation for caregiving than filial affection. Affection did not always enable caregivers to cope with the ensuing stress. Cicirelli’s (1983) research results indicated adult children’s helping behaviors, attachment behaviors, and feelings of attachment would strongly influence future helping behaviors with aging parents. The influence of filial obligation provided only an indirect influence on attachment behaviors. As an older person loses spouse and friends to old age, desires to strength- en intergenerational family ties frequently are pursued (Seelbach, 1978). The desire to strengthen these ties does not negate the potential for problems in family dynamics, as conflicts between age groups or as role reversals are exper- ienced. Some aging parents feel it is the duty of the adult child to care for them in their old age when physical difficulties inhibit independence (Shanas, 1980). Brody, Johnsen and Fulcomer (1984) reported that older women prefer- red adult children to provide emotional support and financial management but not support for income. Expectations for carereceiving and the adult child’s 39 capabilities to provide these services may be in conflict. Other conflicts arise among adult children who wish to give care when the parent does not want to receive care. ER F The literature clearly identifies women as the primary caregivers of the elderly (Atchley, 1988; Brody, 1981, 1984, 1985; Collins, 1986; Horejsi, 1982; National Center for Health Statistics, 1984; Shanas, 1980; Silverman, 1987; Strieb 8: Beck, 1980; Stoller, 1983; Wood, 1987). Springer and Brubaker (1984) report- ed on research findings that found 94% in one study and 70% in another study where family caregivers were female. Similarly Wood (1987) found seven out of every 10 caregivers to be female. The nurturing and caregiving roles have continued to be passed down from generation to generation through the females. Men have in the past been socialized differently than women. When young, men were discouraged from participating in household activities. More recently the males of the baby boom generation are being socialized to participate in household activities, particularly child care, but as yet this role has not transferred to caring for aging parents (Wood, 1987). Bathing a parent is far different than bathing a child, and males do not feel as competent in this area (Wood, 1987). Older parents may prefer the female touch. Brody, Johnsen and Fulcomer (1984) found more older women expected their working daughters to adjust their schedules to care for them than expected working sons to do so. As the child- ren of the baby boom generation grow up and more males provide nurturing, then they and their future children may take a more equal role in providing 40 care for the growing elderly population. W Brody (1981) discussed the increases in numbers of working women, including aging spouses (employed up to and in some cases beyond 70 years of age), middle-aged daughters, daughter-in-laws, and grand-daughters. Atchley (1988) indicated that at ages 65-69, 28% of the men and 15% of the women were employed, and at age 70 and over, 13% of men and 5% of women were still employed. Overall in 1986, 2.6% of the elderly population were in the US. labor force, and 3% were classified as unemployed (AARP, 1987). As employed caregivers, these individuals juggle the heavy load of working and family responsibilities including younger families and older parents. Wood (1987) and Collins (1986) summarized the findings from the 1985 Travelers Corporation study of caregivers in the workplace. They noted that employed women spent an average of 16 hours a week providing care to older family members, as compared with the five hours spent by males. On the average employees spent 10.2 hours caring for an elderly relative. Stoller (1983) concurred with these findings, and additionally observed that employ- ment significantly decreased the hours of assistance provided by sons but not by daughters. W As long as physical health remained good, spouses (particularly females) typically continued to provide care. When health declined, adult children were turned to for care. The marital status of adult child caregivers did seem to impact on the amount of care provided to the older individual (Collins, 1986; 41 Wood, 1987). Cicirelli (1983) found caregivers with disrupted marriages (divorced, widowed or remarried) gave significantly less total help, felt less filial obligation, and felt job obligations limited their ability to help. There was little difference in the amount of caregiving when comparing the subgroups of divorced, widowed or remarried adult children caregivers. Stoller (1983) contradicted Cirirelli’s findings. He indicated that married daughters contributed an average of 20.1 fewer hours per month than did unmarried daughters. These findings were reinforced by the intergenerational exchange model explored by Mutran and Reitzes (1984). Unmarried adult children had renewed and strengthened relationships and exchanges with aging parents. For sons, being married reduced the average level of assistance by 23.3 hours per week. This indicated that daughters-in-law carry more care- giving responsibilities than their spouses. A E F CAREGNER Age of caregivers varies tremendously from elderly spouses to grand- children and great-grandchildren. Caregiversover age 60 comprised 10.8% of the caregiving force according to the National Center for Health Statistics (1984). The majority of the remaining caregivers were middle aged adult children, however adult children continue to age along with their parents. Persons in their 70’s and 80’s could continue providing care for parents in their 90’s and 100’s. The more pressing issue of physical health seems more relevant than age. Individuals disabled in their 40’s or 50’s may be cared for by parents in their 60’s or 70’s. The health concern also applies to caregiving spouses. An 80 year old caregiver may not remember to give medications at appropriate 42 times or may not be able to assist with transfers and the necessary lifting (Springer 8: Brubaker, 1984). RACE OF CAREGNER Woehrer (1982) studied the family support and interactions of a variety of ethnic and racial groups. In terms of familial help and caring for the elderly, she found Black families exhibited strong kinship ties. Frequently intergenera- tional households were established for the sharing of emotional support and . resources. Hays and Mindel (1973) observed similar findings for Black families. Rural Caucasian families were more likely to share extended kinship relationships than were urban Caucasian families. Mitchell and Register (1984) observed that Caucasian elderly persons saw children and grandchildren more often than Blacks, but Black elderly persons were more likely to receive help from children and grandchildren. Sander and Seelbach (1981) researched care preferences among Caucasians and non-Caucasians, and found more Caucasians than non-Caucasians preferred family to provide long term care. Blacks expressed the highest preference for nonfamily care alternatives. This contradicts the reported pattern of extended family caregiving. RELIGIQUS AFFILIATION The connection between religious affiliation and caring for aging family members has received limited coverage in the literature. Wake and Sporakowski (1972) indicated that filial responsibility for adult children tended to be stronger for Jewish families than Catholics or Protestants. Protestants reportedly had the least filial responsibility of the three groups. Legare (1980) concurred with the findings for Protestants and Catholics and linked the results 43 to not only the adult children but also to their parents. He additionally noted that prior to the age of 65, adult children who had strong religious beliefs, regardless of the religious denomination, were more likely to provide care- giving tasks than persons without religious lies. EDUCATION Educational background of the caregiver did not seem to be a salient issue in the literature. None the less, since many caregivers are older in age, it is worth noting the trend in educational attainment for this group. The educa- tional level of the older population has been increasing since the 1970’s. In 1970 the median level of education was 8.7 years, and by 1986 the median level of education was 11.8 years. The percentage of persons completing high school between 1970 and 1986, rose from 28% to 46%. Approximately 10% had four or more years of college (AARP, 1987). With regard to receiving care, Sander 8: Seelbach (1981) reported education of the older person was independent of their preference for having family members provide care. INCOME AND ECQNOMICS OF CAREGIVING According to the American Association of Retired Persons (1987) the median income of older persons in 1986 was $11,544 for males and $6,425 for females. The median income for families headed by persons over age 65 was $19,932. For Caucasian families it was $20,716, and for Black families the median income was $12,477. One in every seven families had incomes less than $10,000. Elderly persons living alone had much lower incomes of less than $7,000. The median net worth of older households was $60,300, which was above the $32,700 average net worth for the US. Net worth was below 44 $5,000 for 16% of older households, but was above $250,000 for 7% of the elderly population. Twelve percent of the elderly population were below the poverty level and received Medicaid. One in every nine Caucasian elderly individuals were poor as compared with one in three for Blacks (AARP, 1987). Sources of income include Social Security benefits, private and public pensions, income from savings, investments and real estate, plus any continued employment. Michigan’s elderly in 1984 reported income from the following sources: 55.6% Social Security; 15.6% jobs; 15.6% pensions, and 8.3% savings and investments (Kong, 1988). Inflation and changing return on investments continue to eat away at revenues (Schultz, 1985). As resources become limited for the older individual, families deal with issues of sharing resources among the generations. Strieb and Beck (1980) point out the linkage between eco- nomics and family interaction. To the extent that generations must choose between dispersing resources between the young and the old, frictions may be evident and increase over time. If incomes remain separate, then psycho- logical independence for both groups remain in tact. Arling and McAuley (1983) reported on financial and nonfinancial factors in providing care for the elderly. They observed physical conditions more so than financial factors to be the driving force behind institutionalizations. Since more families care for the elderly in the community versus institutions, concepts were explored for providing economic incentives for family care- giving. Payments made by insurance companies or the government to support older persons in their homes were suggested. Payments might serve to reduce family stress as expenses threaten the ability to provide care Montgomery _ 45 (1982) agreed that financial concerns are a problem for families providing care. He supported the provision of public assistance to reinforce the unrecognized A services that families provide. The National Association of State Units on Aging (Michigan Office of Services to the Aging, 1988) presented a proposal for a major reform of the federal long term care policy for the elderly. Part of the proposal calls. for a package of new benefits for community based long-term care within a new Medicare Part C plan. Eligibility would be based upon individual assessment of functioning for the Activities of Daily Living, and would provide a broad range of medical and nonmedical services to prevent impaired individuals from premature nursing home placement. The Michigan proposed package would fill some of the voids created by the 1988 Medicare Bill (effective, January 1, 1989). The bill dealt with catastrophic illness, but created high deductibles that will prevent most elderly individuals from benefiting by the plan. It is estimated that only 9,000 of Michigan’s one million elderly will benefit from the new bill (Kong, 1988). One positive feature of the federal bill calls for income protection for spouses when financial resources diminish to the point of Medicaid applica- tion. Spouses would be able to have an income of up to $950 per month and assets of $12,000 exclusive of a private residence and one vehicle. Assets in the spouse’s name at the time of application would be protected. Person’s over age 70 could keep whatever life insurance they have. There was no asset protection under the prior legislation which left many spouses impoverished (The Senior Alliance, 1988). 46 SUMY QF DEMQERAPHIC M [@1195 According to the literature, caregivers are predominately spouses or adult children and are female. While some volunteer for the caregiving role, many are expected by their spouse or aging parents to take on the role. They generally provide care in an individual rather than family mode. Age, employment, marital status, and education as factors in caregiving were reviewed in the literature. Caregivers represent all age groups, but elderly caregivers may be the most at risk physically and psychologically. Caregivers under age 65 were usually employed, and juggled many roles and conflicting schedules. Married family members provided more caregiving services than those who were not married regardless of employment status. Educational background of caregiver was not linked to caregiving activities. Race and religious affiliation of the caregiver did not have a consistent impact on caregiving behavior, and there was conflicting information concerning caregiving patterns based on race. Familial bonds, previous patterns of family caregiving and geographic distance seemed to have a more significant influence on caregiving behavior than race. General religious beliefs more than affiliation with one particular denomination seemed to influence caregiving behavior. According to the literature, financial strain was not as pervasive a problem among caregivers as emotional strain. Certainly individual family situations would demonstrate more financial hardships than others. PflYflCAL HEALTH OF CAREGNER: Physical health of the caregivers can vary widely given the potential age 47 range for this group. For the older caregivers, medical technology has shown that the majority of elderly individuals in their mid 80’s are still able-bodied (Atchley, 1988). In 1986, 30% of the population over age 65 reported their health condition to be fair or poor (AARP, 1987). This can be compared to only 7% of the persons under age 65 reporting fair or poor health. There was little difference based on gender, but race has an impact on health status. Among Blacks, 45% reported fair or poor health as compared to 29% for Caucasians (AARP, 1987). The number of days during the year that activities are restricted because of health increases with age, and most older persons have at least one chronic condition. According to AARP (1987), the most frequently occurring physical conditions are as follows: ”arthritis (48%), hypertension (39%), hearing impairments (29%), heart disease (30%), orthopedic impairments and sinusitis (17% each), cataracts (14%), diabetes and visual impairments (10% each), and tinnitus (9%)” In 1984, 23% of the community based older population (6.0 million) had difficulties with one or more personal care activities and one or more home maintenance activities (AARP, 1987). Most of those requiring help with home maintenance were receiving assistance. Needs for assistance increased with age. With regard to physical health and caregiving, George and Gwyther (1986), did not find evidence suggesting decreases in physical health among caregivers as an aggregate group. This is not to say that individual situations may not vary, with health problems exacerbated by the physical strain of providing care (Brody, 1985). Ps CE thc IE}? T95 he] 5)” fro The Van' 48 In summary, physical health of the caregiver is an individual concern. Psychological Strain from the caregiving role, can cause physical reactions such as headaches, stomach problems, high blood pressure and lack of sleep. Changes in eating patterns also would impact on the physical stamina of the caregiver. The literature points out that providing care may do more harm to the caregiver’ 5 health than good for the patient. l_’§YCHOLOGICAL CHARAQI EETIC§ OF THE CAREGNER MENTAL HEALTH AND QAREQIVER STRAIN Providing care to someone in need can be a stressful experience for some individuals. Individuals are more or less affected by strain depending upon the particular situation. Brody (1985) identified emotional strains that could result from caregiving. These included: depression, anxiety, frustration, helplessness, sleeplessness, lowered morale and emotional exhaustion. The symptoms were related to restrictions on time and freedom; isolation; conflict from competing family or work demands; difficulties in setting priorities; and interference with life-style and social or recreational activities. The literature acknowledges that the concept of caregiver strain or burden is a perception of the caregiver compounded by a multitude of situational factors (Canter, 1983; George 8r Gwyther, 1986; Hooyman, 1986; Poulshock & Deimling, 1984; Robinson, 1983; Strong, 1984). Canter (1983) explored the relationship of 14 variables to caregiver strain. These included demographic variables, situational variables and attitudinal variables. The demographic variables were age, sex, race, socioeconomic re Cl 49 status, marital status and relationship to caregiver. The situational variables were health status of carereceiver, work status of caregiver, caregiver’ s ability to manage financially and the amount of assistance provided by the caregiver. Attitudinal variables were the degree of worry; compatibility of relationship between caregiver and receiver; and attitude of caregiver towards the importance and value of family. Canter’ s (1983) findings noted the following five variables that impacted the most on caregiver strain: a close relationship to the caregiver (the closer the bond the greater with strain); degree to which caregiver worries; attitudes about the role of the family; the sex of the caregiver; and the quality of the relationship between the caregiver and carereceiver. Strain was more associated with women who worry and have close bonds with the care- receiver,.while feeling strong family values for responsibility to providing care. Continual day to day caregiving involvement, particularly for spouses, put them at greatest risk. Deprivation of personal needs and socialization, without respite, would lead to burnout. George and Gwyther (1986) concurred with Cantor’ s (1983) findings assOciating mental health with caregiver burden. Spouses were considered at greater risk, followed by adult children. Extended family or friend caregivers were at the lowest level of risk for caregiver burden. Poulshock and Deimling (1984) observed a link between caregiver burden and the elder's impairment with the Activities of Daily Living as well as cognitive impairments. These impairments were difficult to deal with, and impacted on the family in varying ways, but both were connected with 50 caregiver depression and thus caregiver burden. Robinson (1983) developed and validated a 13 item Caregiver Strain Index. Three major areas were explored: carereceiver characteristics; caregiver’ s subjective perceptions of the caretaking relationship; and the physical and emotional health of the caregiver. King, Given and Given (1985) similarly associated caregiver burden with these three areas. Appendix A has a listing of the specific questions developed for the three categories of the Caregiver Strain Index (CSI). Robinson’s research findings noted no significant differ- ences between CSI scores for men and women. The relationship of the care- giver to carereceiver was not significantly related to CSI scores. Caregivers in poor health were expected to have more strain, but this was found not to be the case. Additionally, caregivers who lived with the carereceiver, versus those who lived elsewhere, had no significant difference in CSI scores. Both younger and employed care- givers experienced higher CSI scores. This implies that compounding of roles and less experience with caregiving may generate strain. PREPAREDNLSS AND HEALTHY CAREGNER BEHAVIQR Two additional psychological factors attended to by this author were preparedness for providing care and healthy caregiving behaviors. The literature did not address these variables. This highlights the need for add- itional research to observe the impact of preparedness and healthy caregiving behaviors on caregiving roles, caregiver strain and coping mechanisms. LIEQ-SEMQ BEHAVIQR Seeking assistance comes easily for some individuals and is difficult for others. Assessing when help is needed is a complicated task not effectively 51 handled by all individuals (N adler, 1983). Many may choose to endure hard- ships rather than utilize available sources of help. Nadler (1983) points out that a help-seeking situation is viewed as a conflict between the need to alleviate current difficulties by seeking assistance and the need to protect one’s self image as a competent and self-reliant individual. Sex differences, socioeconomic differences and self esteem issues are factors impacting on help-seeking. More women then men seek assistance. More lower income than higher income seek assistance, but pride and self esteem mediate this factor. Reciprocity also determines help-seeking if services have been previously shared (Gross & McMullen, 1983). Burger and Cooper (1979) linked desirability for control and help-seeking behavior. Individuals feeling a sense of control over their lives would seek opportunities and resources to deal with problems that arise. This would include the assessment of a problem situation on the home front; realization that one’s efforts alone would not correct the situation; and seeking help to address deficiencies. Hooyman (1986) observed that caregivers who are stressed need to nego— tiate shared caregiving responsibilities and ways to build a helping network with friends, neighbors and acquaintances. If family caregiving is to thrive, the helping network needs to reinforce it, build upon it and link professionals and programs to strengthen it (Horejsi, 1982). Gray (1984) and Neubacher (1987) promote the care and support of the caregivers to prevent family breakdown. Neubacher feels this has to come not only from the extended social environment but also from the carereceiver, through conversation, 52 thanks, and respect for assistance given. SQ MY OF PSYCHOLQICAL CHARACTERISTICS The literature points out that caregivers experience varying levels of psychological and emotional strain. Particularistic family factors determine the amount and type of strain. In general, spouses and adult children seemed to experience more strain than other family members or friend caregivers. Women tend to experience less caregiver strain than the caregiver husbands or adult children. The males may not be prepared to take on caregiving, and the adult children are juggling work and their own home life while providing care for their parents. With regard to help-seeking, it is a function of conflict resolution. Factors influencing help-seeking behavior include gender, income and a sense of self control. Overall, females, those with lower income, and those with a strong sense of self esteem tend to seek out assistance from others. ML AND COMMUNITY RESOURCES FOR CAREGNERS The role of caregiver can be enhanced by keeping in contact with support- ing social and community resources. Selecting these resources carefully is important. Associating with positive individuals, who refuel the cognitive and physical energies, can bring renewed motivation for providing care. Negative associations can deepen depression and aggravated feelings. Social network tends to diminish with age (Morgan, 1988). The networks seem to decrease as a function of declining resources. The implication is that older caregivers with declining resources may withdraw from social networks during a time when network linkages are needed the most. 53 Zarit, Reever and Bach-Peterson (1980) found caregiver burden to be less when more social contacts were paid to the caregiver and the disabled individual by friends and family. The number of visits to the household was more of an indicator of burden than were other characteristics about the patient’ s physical and mental condition. The authors encouraged increased social support to caregivers as a reduction of stress. Beyond social support, community resources provide a transfer of caregiving roles from the family to the community in the hope of complement- ing the family’ 5 informal caregiving functions (Hooymen, Gonyea & Montgomery, 1985). Krout (1983) reviewed the literature concerning know- ledge and use of services by the elderly. The degree of knowledge varied widely from study to study. Many older individuals had heard of programs, but were unable to explain the details of the service or how one might obtain the service. Better educated, female, and married older persons were more aware of programs than their counterparts. Household caregiving functions for impaired elderly individuals take on different configurations based upon the sex of the caregiver, maritalstatus and presence of children (Noelker and Wallace, 1985). Use of formal services by these households averaged less than one half day per week. Utilization of services among the elderly population is far less than the degree of knowledge of these services or access to programs. Krout (1983) found Blacks, women, and persons with less income and education used more services. Users were a small fraction of the overall elderly population. Stoller and Earl (1983) found services to be primarily provided by informal family 54 linkages rather than community sources. Krout (1984) concurred, noting the frequency of contact with adult children to be negatively related to dependence on formal services. O’ Brien and Wagner (1980) suggested that the informal family ties block proper access to useful services rather than leading to more humane and cheaper alternatives to caregiving. Hooyman, Gonyea and Montgomery (1985) studied the impact of term- ination of home services on caregivers. They found the presence or absence of chore services was not associated with caregiver burden or stress. In summary, the literature supports the positive influence of social and community resources in reducing caregiver strain. Unfortunately, as one ages the network of resources tends to decrease at a time when needs increase. Awareness of programs and seeking the services of programs did not match with the need for services. In other words, persons in need did not always seek programs even if they were vaguely aware that a program existed. Females, well educated persons and married individuals more often sought programs. Type of service was associated with the reduction of caregiver strain. The literature suggested the need for more community based personal care services versus household chore services since personal care tasks generated more psychological strain. HOUSING RESOURCES FOR CAREGNERS The literature with regard to caregiving and housing is limited to the physical design issues previously discussed in this chapter. Issues related to caring for one’ 3 home plus caring for a disabled individual are addressed in the literature under physical or psychological health of the caregiver. Increases in 55 expenses, including housing expenses, are a part of the overall financial picture for the caregiver. With regard to interacting with the physical environment, it is important to repeat the team role the housing environment can play in the caregiving arena (Hiatt, 1982). Supportive environments reinforce competencies while building coping strategies, and frustrating environments breed stress, depression and anger (Carp, 1977). This applies to the stroke survivor as well as the caregiver. In summary, the literature suggests the need for the physical environment to work as a part of a team approach to health care. Examining the stroke survivor’ s ability to ambulate is an effective measure of person-environment fit. The ability to walk has been used to predict long term survival from a stroke, and ambulation using aids and devices (wheelchair) presents the most difficult design issue for barrier-free accessibility. The environment can work to enhance the stroke survivor’ s and the caregiver’ 3 level of functioning. Stress can be a product of poor person-environment fit. Encouraging older individ- uals to modify the home environment or move to a more supportive environ- ment in search of person-environment fit, is a difficult task when the resident feels strong attachment and thus housing satisfaction. Caregivers can play a key role in facilitating person-environment fit. Yet these typically older female spouses are less likely to make environmental changes or a housing move. They become the bridge between the stroke survivor’ s needs and the environment, which means that they lift, push and pull, bearing the physical burden themselves. CHAPTER THREE METHODOLOGY The methodology chapter describes the research questions; research var- iables; research design; selection and description of the major project sample and sub—sample for this project; procedures used; instrumentation and data analysis. An exploratory, qualitative, case study approach is utilized to conduct the research. The purpose is to assess indicative characteristics of caregivers that facilitate or detract from person-environment fit for disabled stroke survivors. The findings have implications for future large scale, quant- itative research for caregivers in general. RESEARCH QQ EQIIONS Person-environment fit focuses the relationship between a human being and the physical, psychological and social environment. Obtaining a good physical fit for someone who is disabled becomes a critical component for independence versus dependence in accomplishing routine or higher level activities of daily living. Good fit is contingent upon many variables, but a critical variable is the caregiver. Three broad research questions are addressed in this study: (1) What is the relationship between person-environment fit and 56 57 selected physical and demographic characteristics of the stroke survivor? (2) What is the relationship between person-environment fit and selected caregiver characteristics? (3) What is the relationship between the person-environment fit score and caregiver strain index? RESEAR VARIABLES Many variables are explored in this multi-case study, qualitative method- ' ology. The dependent variable is person-environment fit, as comprised by the relationship between the stroke survivor’ 5 pre and post-stroke health; his/ her ability to perform the Activities of Daily Living; use of aids; the condition of the physical housing environment; and the caregiver’ 5 physical support. Figure 2 illustrates the relationship of case factors that lead to a Summative person- environment fit score (the dependent variable). The independent variables are characteristics of the caregiver. These characteristics include demographic, physical, psychological, social, and housing characteristics. Caregiver variables were analyzed for cases that exhibited problems with person-environment fit and in which the stroke survivor had problems performing the Activities of Daily Living. Figure 3 shows the relationship between the independent and dependent variables. HUMAN HUMAN CONSTRUCTED ENVIRONMENT Pro-Stroke Aids/Devices Physmal Health , , ,. I Housing mi?“ Home -I Y “’3 BEHAVIORAL ““3"“ ENVIRONMENT Caregiver Physical Activities of Health Daily Living Figure 2: Factors Comprising Person-Environment Fit DEPENDENT VARIABLE I PERSON-ENVIRONMENT FIT I INDEPENDENT VARIABLE CAREGNER . CHARACTERISTICS: Demographics Physical Health Psychological Health Caregiver Strain Preparedness Help-Seeking Caregiver Behavior Social Network Community Housing Resources FIGURE 3.: Caregiver Impact on Person-Environment Fit DEPENDENT VARIABLE PERflN-ENV-IRQNMENT FIT Conceptual m'tion: This is the congruence between human physical . needs and the physical environment serving as a support system enabling optimum functioning of Activities of Daily Living. For this study, person- environment fit concentrates on the fit provided for the stroke survivor’ s ambulation and maneuverability into and throughout the home environment. ngratignal Definition: Person-environment fit is a summative measure of six categories that rate the fit between the person’s physical ability to ambulate, and the supportiveness of the environment. The factors in the summative measure include: 1) Stroke survivor’ s pre-stroke ability to ambulate. 2) Stroke survivor’ s post-stroke physical characteristics that may inhibit ambulation. 3) Stroke survivor’ s ability to perform the Activities of Daily living that deal with ambulation (walking and climbing stairs). 4) Stroke survivor’ 5 need for and use of aids and devices that en- hance ambulation. 5) Physical conditions of the housing environment at the time of the interview and its supportiveness for ambulation. 6) Physical characteristics of the caregiver that enable him / her to assist the stroke survivor with ambulation. Each factor is scored using a three point scale with numerical values of 1, 0, or -1. Scores from each of the six factors are totaled for an overall person- environment fit score. Interpretation of total scores are defined as follows: 61 Score Definition +6 Excellent person-environment fit: stroke survivor charact- eristics as compared with the use of aids and housing characteristics allow for ease of self ambulation; caregiver is in excellent health and can provide assistance if necessary. +3 Good person-environment fit: stroke survivor may have minor problems with ambulation; aids and housing environment are generally supportive but may need minor changes; caregiver’ 5 health generally allows for assistance if necessary. 0 Person is coping with the environment: stroke survivor and caregiver are holding their own at this break even point. Stroke survivor has some problems with ambulation and the housing environment may not meet his/ her needs, but it can be changed with minor effort; the caregiver can provide some assistance with ambulation if necessary. -3 Poor person-environment fit: stroke survivor has difficulty with ambulation with or without an aid; the housing environment may require minor or some major changes to enhance ambulation; caregiver may provide a little assistance, but may have a few physical limitations of his/ her own to deal with. -6 Severe problem person-environment fit: stroke survivor has a severe disability and the environment has structural problems that do not allow for self or assisted ambulation; the caregiver is not able to provide the needed physical help with ambulation. Prgsggke Ambulation 9f the Stroke Survivor W The physiological ability of the stroke survivor to walk or climb stairs prior to the stroke. angg' nal Definition: Assessment of pre-stroke ambulation was made from questions IH9, 1H7 and II-IB (question number refers to the informant’ 5 interview; see Appendix D for interview instruments). Question 1H9 is a list of 62 pre-stroke physical conditions. 1H7 assesses the stroke survivor’ 5 overall pre-stroke health (ranked as either poor, fair, good or excellent). The level of interference of the physical condition on routine activities (ranked from no interference, to a great deal of interference) is explored in IHB. For the person- environment fit score, pre-stroke ambulation is rated as follows: +1 Prior to the stroke, the stroke survivor could walk and climb stairs by him/ her self with ease and may have used aids. 0 Prior to the stroke, the stroke survivor could walk, and climb stairs but not with ease, and he/ she easily became fatigued -1 Prior to the stroke, the stroke survivor could not walk or climb stairs (with or without aids) without human assistance. Pfit—Strokg Phjgical Characteristics of the figgke s urvivgr angptual Definition: The physiological changes occurring with stroke that potentially inhibit ambulation and may require environmental changes. Mational Definition: Assessment of post-stroke ability for ambulation is achieved through question IH9, which provides a summary checklist of current physical ailments. Additionally, the following physical conditions impacting ambulation were reported in items IHZ? A,B,C,E & N: weakness or paralysis of arms and or legs; loss or change in ability to feel sensations in arms or legs; loss of c00rdination of voluntary movements; jerkiness of movement; and problems in judging distances. For the person-environment fit score, post-stroke physical characteristics inhibiting ambulation are rated as follows: +1 The stroke survivor has no residual paralysis of limbs and can easily ambulate. 63 0 The stroke survivor has minor paralysis of limbs, but demonstrates self ambulation, with aids if necessary. -1 The stroke survivor has paralysis of limbs and self ambulation is difficult, requiring assistance. Agn’yig‘g of Daily Living Congptual Definition: Activities of Daily Living are the overall perform- ance of routine functions namely: bathing, dressing, going to the toilet, transfer- ring, continence and feeding (Katz, Ford, Moskowitz, Jackson, jaffe, Cleveland, 1963). Qwational Definition: Section lI-I28 - IH44 in the informant instrument uses an ordinal scale (needed help before stroke; can not do at this time; can do with aids and devices; can do with help from others; can do without help) to assess the stroke survivor’ s ability to perform Physical Activities of Daily Living (eating, dressing, grooming, walking on level surface; walking up and down stairs; getting in and out of bed; taking bath / shower, controlling bladder and bowel functions; transferring on and off toilet) and Instrumental Activities of Daily Living (using telephone, driving, using public transportation, shop- ping, meal preparation, doing light and heavy housework). For the person-environment fit scale, only the Activities of Daily living for walking and climbing stairs are used to determine ambulation capabilities. The following scores and definitions are used in the person-environment fit calculation. +1 The stroke survivor has an average ADL rating of five (can do without help) for both items (walking and climbing stairs). 0 The stroke survivor has an average ADL rating of four or three (can do with help from others or with aids) for both items. 64 -1 The stroke survivor has an average ADL rating of two (can not do at this time) for both items. Aids {gr Ambulation Concemd Definition: The device or apparatus in use to assist with walking, climbing stairs or general ambulation. Devices usually include canes, walkers or wheelchairs. ngational Definition: For calculating person-environment fit, aids are assessed in terms of their need by the stroke survivor, availability to the stroke survivor, and the need for human assistance in using the aid. Question II-IZO indicates the aids used by the stroke survivor; IHZI questions the need for human assistance with the aids, and IHZ3 notes the need for aids not currently available to the stroke survivor. The following scores and definitions are used to calculate the need for and use of aids for ambulation for person-environment fit: +1 The stroke survivor either does not need an aid for ambulation, or an aid is used easily without human assistance. 0 The stroke survivor needs an aid and uses one with difficulty by him/ herself. -1 The stroke survivor needs and uses an aid, but it is not self controlled thus requiring human assistance. OR an aid is needed and not provided. Phfiical Characteristics of the Housing Environment anc_eptual Definition: The physical environment encompasses the housing structure, with its design; layout; presence of stairs; structural and 65 non-structural changes, including special furnishings and surface treatments. The housing environment can enhance or inhibit the stroke survivor’ s level of functioning and the caregiver’ s ability to provide services. MW Only physical housing characteristics that enhance or inhibit ambulation are addressed here for person-environment fit. These characteristics include: stairs at the main entrance (IB27), number of stairs at the main entrance (IB28), stairs at secondary entrance (IB29), number of stairs at secondary entrance (IB30), stairs within the home (1331), and number of interior stairs (I332). In addition, it is important to note any bedroom adjust- ments (IB20); structural changes made to the inside or outside of the home (IB19); location of the stroke survivor’ 5 bedroom to the bathroom (IB17 & 18); and observational notes recorded by interviewers, when considering person- environment fit. For calculating person-environment fit, the following scores and definitions are used for assessing the supportiveness of the physical environment for ambulation at the time of the interview. +1 The house supports ambulation (clutter free for easy passage, no stairs or a ramp is provided). 0 The house has non-structural housing barriers (clutter, clogged passageways, excessive amount of furnishings) that could be corrected inexpensively. -1 The house has structural housing barriers inhibiting ambulation (exterior and interior stairs, narrow door openings for wheelchair passage, reinforcing walls for the addition of grab bars or railings, etc.). 66 th'g gm“ tig of Carggivg for Providing Assistance with Ambulation and Person-Environment Fit anm Definitign: Caregiver's physical health since the stroke survivor’ 3 stroke, that enables or inhibits physical assistance with ambulation and person-environment fit. Qmag'onal Definition: In the Caregiver interview, the caregiver was asked to rate his/ her health prior to the stroke as being excellent, good, fair or poor (CHI ). Current health problems and their impact on providing care and assistance to the stroke survivor were reported in questions CI-IS,7,9 and 11. For calculating person-environment fit, the following scores and definitions are used for assessing the caregiver’ s physical ability to provide assistance with ambulation. +1 The caregiver is in excellent health and physically is able to provide support for ambulation. 0 The caregiver is in good health, but some physical problems may be aggravated by providing support to the stroke survivor for ambulation. -1 The caregiver is in fair to poor health. Providing a lot of physical support for ambulation may do more harm to the caregiver than good for the stroke survivor. Caregiver is UNABLE to lift stroke survivor or wheelchair. Caregiver can NOT assist with transfers or provide physical support for ambulation. INDEPENDENT VARIABLES LI‘IARAEM OF THE QflEQIVER Wm Caregivers provide social, psychological and 67 physical support to those in their charge. As a support system, a caregiver may serve as a linkage in providing person-environment fit for the patient. Sociodemographic characteristics, such as: relationship of the caregiver to the patient, the caregiver' s gender, race, age, educational background, marital status, religious preference, employment status, and income (income adequacy since the stroke), may be factors in whether or not person-environment fit has been achieved. Additionally, the caregiver’ 5 physical health, psychological characteristics (caregiving behaviors, caregiver strain, help-seeking behavior), social and community resources, and housing resources may play fundamental roles in person-environment fit. Each characteristic is explored in the case studies. Qmatignal whom The following information is obtained from the Caregiver Survey Instrument (See Appendix D). Sociodemographic charact- eristics concerning the caregiver include the noted items and corresponding questions below: Relationship to Stroke Survivor C10 (spouse, daughter, daughter-in-law, son, son-in-law, brother, sister, mother, father, mother-in-law, father-in-law, grandmother/ father, grandson / daughter, other relative, friend, neighbor, other.) Gender of Caregiver CA1 (male, female) Race CA2 (White, Black, Oriental, Spanish American, American Indian, other) Age CA3 (date of birth) Education CA4 (0-4 years; 5-8 years; high school incomplete; high school completed;, post high school, business or trade school; 1-3 years college; college completed; post graduate college.) Marital Status CA5 (single, married, widowed, divorced, separated, remarried.) 68 Religious Preference CA6 (open ended question requesting preference.) Emplth CD1 (full time, part-time, unemployed, homemaker, retired, in school part-time, in school full time, disabled, other) Income CD9 ($4,999 or less, $5,000-$9,999, $10,000-$19,999, $20,000- $29,999, $30,000-$39,000, $40,000-$49,999, $50,000- $59,999, $60,000-$69,000, $70,000-$79,999, $80,000- $89,999, $90,000 and up) Number of persons living on that income CD10 Changes in financial situation CD11 (yes/ no) Income adequacy CD15 (not enough, just enough,some extras) Ph3§ical Characteristics of Carggiver Conceptual Definition: Physical health of the caregiver encompasses the pre and post stroke health and the impact of the caregiver’ 5 health on his/ her ability to provide care for the stroke survivor. ngational Definition: Physical health conditions before the stroke and increased health problems during the time of caregiving may have an impact on caregiver strain. The questions noted below were used to assess physical health as well as changes in eating habits since the stroke and their potential impact on physical health. Physical Health (yes/ no responses for 2,3,5,7,9,11) CH1 Rating of health prior to (SS) stroke (excellent, good, fair, poor) CHZ Prior to stroke, did health stand in way of doing what you wanted to do? CHB Did stroke affect pattern of physical activity? CI-IS Do you have any health problems or illnesses? CH7 Do any of your health problems make it more difficult to care for (SS)? CH9 Have any of your health problems increased because of caring for (SS)? CI-Ill Are any of these health problems new since (SS) stroke? 69 Changes in eating habits since (SS) stroke. C14, C15 _ (yes/ no responses) CI4A1 Change in amount of food eaten. (21481 Change in how often eat with friends. CI4C1 Change in how often eat out. CI4D1 Change in how well balanced the meals are. CI4E1 Change in time spent shopping and cooking. C15 Weight or appetite change. Psycholggical Characteristics of Carggiver angmal Definition: The caregiver’ s psychological pre and post stroke health includes tendencies for worrying, satisfaction with life, caregiver strain, preparedness for caregiving, help seeking behavior, and healthy caregiving behaviors. ngag’onal Definition: The caregiver interview explores mental health of the caregiver from both the pre and post stroke wofional status. Questions assess the degree of worrying, satisfaction with life, and changes in emotional health with the onset of providing care. The following questions address the caregiver’ s emotional health. Mental Health: (CPI-5) CFl Frequency of worrying. (very often, fairly often hardly ever) CFZ Consider life dull, routine, or exciting. CF3 Satisfaction with life. (good, fair, poor) CF4 Present emotional health. (excellent, good, fair, poor) CFS Comparison of emotional health now to before stroke. (better, about the same, worse) Psychological characteristics also include the Caregiver Strain Index Scale developed by Robinson (1983) (CLlA 1-14). Factors used to assess the existence 0f Caregiver strain included such factors as: sleep disturbance, financial buI'den, physical strain, family adjustments, and patient’s behaviors as 70 disturbing (See Appendix A for complete scale). The 13 item index used "yes/no" responses with the ”yes” responses summed to create the caregiver strain score. A low score (1-3) indicated low caregiver strain and a high score (10-13) represented high caregiver strain. Preparedness for caregiving lent insight into the caregiver’ 5 level of pre- paration for contacting health professionals, researching aids and devices plus changes to be made to the home. Additionally, this section of the survey instrument addresses the amount of time caregiving would involve. It also assessed whether the caregiver knew enough about strokes to understand the changes that took place with the stroke survivor. The questions below were used to note preparedness for caregiving: Preparedness for Caregiving: Ordinal scale for CG2A, 3A, 4A, 18A 19A, 20A: not at all prepared, a little prepared, somewhat prepared, very prepared, completely prepared. CG2A Knowing who to contact when you had questions about (SS) care or health. , CG3A Knowing what equipment or devices were needed and where to get them. CG4A Preparedness for dealing with the amount of time care- giving would take. CG18A Having enough information on strokes. CG19A Knowing what changes to make to the inside or outside of the house. CG20A Finding someone to make these changes to the house. Along with being prepared for caregiving, one must also seek help from tithe to time. Help seeking behavior was defined as the caregiver’ s willing- nfiss and frequency for obtaining assistance from family, friends, neighbors, and community services (resources beyond him/ herself). For this study, 16 cl‘1&8tions (CL4 a-q, see Appendix A) addressed sources for caregiver 71 help-seeking, using an ordinal scale to indicate the frequency of help-seeking contacts (never, once or twice a year, monthly, weekly, more than once a week). The scores for the 16 items were averaged, with a score of five indicating active help—seeking from a variety of sources. Beyond seeking help, other caregiving behaviors have been reviewed to note the caregiver’s psychological adjustment to the situation. A measure for Caregiving Behavior was created with the items from CG30-48 (see Appendix A). Nineteen items were assessed with an ordinal scale (almost never, seldom, sometimes, often, almost always) for caregiver behavior. The scale included such caregiver characteristics as allowing others to stay with the stroke survivor; calling the doctor when needed; putting off taking care of oneself; and neglecting the stroke survivor. The wording of the questions in this scale made some ratings with a response of ”almost never” to mean healthy care- ,giving behavior. Other questions with a response of ”almost always" indicated healthy behavior. The scores from ten of the items were averaged, with a composite score of ”five" indicating healthy caregiving behavior. The remaining nine items also were averaged, with a score of ”one” denoting healthy caregiving behavior. an mmuni Resour f rtheCar 'ver Comm The importance and frequency of visits from family and friends impacts upon the caregiver" 5 social network for having someone to talk with and provide help. Use of community services also is an important car'egiving network for promoting person-environment fit. Qmag'onal Definition: Social resources were addressed in questions 72 CE1-8. These items noted the importance of visits from family and friends plus the frequEncy of visits since the stroke. This section also looked at the caregiver’ 5 network for having someone to talk with and having someone to assist with the caregiver’ 5 personal needs, as listed below. Social Resources: CEl Importance of regular visits from friends/ family. (very important, important, somewhat important, un- important, very unimportant) CE2 Had visits since (SS) stroke. (yes/ no) CE3 Frequency of visits. (rarely, couple of times, weekly, 3-4 times a week, daily) CE4 See friends/ family as much as would like. (yes / no) CE6 Have friends/relatives to talk with. (yes / no) CE8 Have others to help with personal needs. (yes/ no) For community services, question C11 was an open-ended question used to discern the community services currently in use by the Caregiver. ngsing Resources for the Carggiver anggptual Definition: Housing resources are the caregiver perceptions to physical environmental issues: such as older family members living with younger family members; problems in caring for the home; satisfaction with the living arrangement; and future/ ideal housing settings. In addition an increase in housing expenses since the stroke could be a cause for strain and infringe upon housing resources. gmtional Definition: Housing resources for the caregiver were identified by the following questions and cover a variety of housing topics: Housing Resources: (yes/ no CB 25,26,28,30,32) CBl Tenure (own, rent, live with someone else) CBZS History of older family members living together. C826 Problems in caring for home since stroke. CBZB Housing expenses increased since stroke. 73 C830 living arrangement working out well. C832 Future housing plans. C833 open-ended description of future housing plans. C836 open-ended description of ideal housing situation. W A qualitative study format was used to obtain 20 family case studies. Reinharz and Rowles (1988) affirmed the need for qualitative study in geront- ology and provided a literature review for the philosophical rationale for qual- itative research. The goal of qualitative research is to truly understand human behavior from the individual’s own frame of reference (Cook & Reichardt, 1979). The rich, subjective, in-depth knowledge gained from face to face inter- action puts responses into the familial culture and jargon. This gives meaning to quantitative information that may be collected. Additionally, observations assess environmental context, providing perspective for interview responses. Personal in-home structured interviews, with both fixed responses and open-ended questions, were conducted with each of 20 families. During the six to eight hours the interviewers spent in the home, three interviews and general observations took place. The stroke survivor, an informant and a primary caregiver were interviewed. Given their limitations, the stroke survivors were Predominantly asked questions that would generate yes/ no responses. Open- ended responses were pursued when the stroke survivor was able to answer. The questions asked of the stroke survivor were personal perceptions that Gould not be answered reliably or validly by the informant. The informant iInterview explored the past and present condition of the stroke survivor; Whereas the caregiver interview addressed the strOke’s impact on the caregiver, 74 as an individual, as well as the stroke’ 3 impact on the family. A team of two interviewers made the initial visit, collecting the stroke survivor and caregiver data. Stroke survivors and caregivers were interview- ed in separate rooms. Since the initial visit frequently consumed two to three hours, a second session was scheduled, within a week of the first session, for collecting the informant’ 5 information. In most cases the informant and the caregiver were the same person. Overall the study format offered an oppor- tunity for in-depth familiarization with the family unit, its network, culture, interaction style and general surroundings. §ELECTIQN OF MAIOR PROIECT SAMPLE Names of stroke survivors, over age 55, were obtained from hospitals and home health agencies in and surrounding three major cities (Lansing, Grand Rapids and Flint, Michigan). Clients were initially screened by referring medical personnel as being recent stroke patients physically and mentally capable of responding to a structured interview. Stroke survivors were additionally screened by the researchers through a telephone interview obtaining the following information: age; date of stroke; incidence of multiple strokes; date of discharge from hospital or institution; type of stroke and general residual disabilities; plus l'esidential situation, and name of informant and / or caregiver. (see Appendix 8) Due to the small number of referrals and small number of qualified and willing participants, a random sample was not possible. However, since stroke Dec111's randomly within the population at large, and the referred families rePresented varying socioeconomic levels residing in rural, suburban and 75 urban locations, the researchers felt the sample was somewhat representative of those who experience stroke. DEEEON QF MAIOR PROLECT‘ SAMPLE W Of the 20 stroke survivors serving as the sample, 13 were male and seven female. Marital status indicated 13 married and seven widowed stroke survivors. The mean age was 73.2 years, with a range of 57 to 89 years. Mean age for the male stroke survivors was 69.3 years and 80.4 years for the females. Since data are not available for the incidence or age of onset for stroke, the sample can be compared to the age at death from stroke. In 1985 the median age at death from stroke in Michigan was 79 years; 76 years for males and 82 years for females. Death rates were higher for women (70.2%) than men (50.9%) for all age groups; but the death rates for men, age 55-84, rose above women by 21.3% (Michigan Health Statistics, July 1987). The racial breakdown of the major project sample was 80% Caucasian and 20% Black. Overall in Michigan 90.9% of the population is Caucasian and 8.8% is Black. In 1980 the proportion of Caucasian and Black population over age 65 was 10.4% Caucasian and 6.9% Black (AARP, Minority Elderly in Michigan, 1980 census). The 1985 stroke death rates for persons under age 75 were higher for non-Caucasians than Caucasians. In fact the incidence was 45.8% higher for non-Caucasian males and 64.0% higher for non-Caucasian females under 75. The trend reverses for persons over age 84 with more Caucasians dying from stroke than non-Caucasians (Michigan Health Statistics, July 1987). The educational background for the sample showed that fourteen stroke 76 survivors (70%) had not completed high school, three (15%) completed high school and thrie (15%) had at least a partial college education. For persons aged 25 and up, 67.7% in the US. and 67.9% in Michigan had completed high school. For the same age group, 10.9% in the US. and 14.2% in Michigan had completed a four year degree (Michigan Statistical Abstract, 1987). Two stroke survivors were employed outside the home at the time of the stroke. Others were either homemakers or retirees. Income ranged from $4,999 to $69,000, with 68% reporting (N =16) income of less than $20,000. For all ages, the median family income in Michigan was $22,108 in 1985. The average per capita income was $13,867 (Michigan Statistical Abstracts, 1987). According to the US. 1984 census, 34% of the persons over age 65. had income under $10,000 (U .5. Census, February 1987). cm The caregiver sample was comprised of 18 females and two males. Their relationships to the stroke survivors included: 13 spouses, three daughters, one son, one sister, one daughter-in-law, and one other relative. The mean care- giver age was 66.5 years with a range of 45 to 83 years. Marital status showed sixteen married, one single, one widowed, and two divorced. According to the National Center for Health Statistics, National Health Interview Survey on Personal Care (1984) women provided 80% of the caregiving, including wives, daughters and other females. Caregivers over age 60 comprised 10.8% of the caregiving force. Education level for caregivers showed eight (40%) had completed less than a high school diploma, seven (35%) completed a high school diploma, the rl lr—1 77 remaining 25% completed post high school training or college. Ten caregivers were full time homemakers, six were retired and four were employed full time outside the home. Caregiver income paralleled and did not significantly vary from that of the stroke survivors. Again the range was $4,999 to $69,999 with the majority less than $20,000. INTERVIEme PROCEDURES FOR MAIOR PROIECT Training of interviewers included a session with procedural discussions and observation of a trial interview. Interview instruments were pretested with stroke patients and their caregivers. Instruments were refined after this procedure (See Appendix D for the parts of the caregiver and informant instruments used for this study). If the stroke survivor fit the study criteria, interview appointments were scheduled. Appointments were slated during hours when the stroke survivor would be well rested and fed. Researchers went to every effort to avoid dis- ruption of family routines and schedules. Clients were called the night before or the day of the interview to be sure all was well. As explained previously, interviewing was two tiered. During the first session, stroke survivors and caregivers were interviewed at the same time but in separate rooms. At that time consent forms (See Appendix C) were signed by both parties. The informant was interviewed at a second appointment that typically took place within the following week. Again a phone call preceded the second arrival. Interviews were tape recorded. Although families did not seem to mind the presence of a recorder, they had the right to refuse taping. 78 Each interview was approximately two to three hours in length. Interview- ees (especiallythe stroke survivors) were offered the opportunity for breaks. Following the completion of. all family interviews, a thank you letter was sent. W During the initial prescreening telephone contact and the beginning of each formal interview, the respondents were informed of family confidentiality and data reporting procedures that would summarize general findings. The goals of the study were clearly explained. Each family knew that their input would not generate any personal benefits but would assist future families confronting similar issues. Families were assigned a case number as the interviews were completed to assure anonymity. Project procedures were approved by the University Committee for Research Involving Human Subjects (UCRIHS) (See Appendix E). INSTRngATIQN Three parallel instruments were designed to cover similar topics for the stroke survivor, informant and caregiver interview. The following general topics were addressed in each of the three survey instruments: sociodemo- graphics, housing, clothing, financial resources, social resources, mental health, physical health, nutrition, and community services. ' The Q_A_R§ Mulg‘dimensional 8am, prepared at the Duke University Center for the Study of Aging and Human Development (1978), served as the primary instrument to be adapted and modified to meet the major project’ 5 needs. It had originally been developed for clinical assessment of the elderly in five arenas. These topics included: social resources, economic resources, 79 mental and physical health, and self care capabilities. Both reliability and validity have been substantiated in clinical settings. The format for surveying the Activities of Daily Living (Katz, Ford, Moskowitz, Jackson, Jaffe, Cleveland, 1963) also was taken from the OARS instrument. Where standardized instruments were not available, sections for the three instruments were specifically developed for topics such as: nutrition, housing, caregiving and help-seeking behaviors. The Caregiver Strain Index (Robinson, 1983) was incorporated into the Caregiver instrument. It was a validated survey instrument used to note perceived strain with the caregiver role. It was intended to serve as a pre- dictive device for identifying caregiver populations at risk. For this study, Caregiver Strain Scores are compared with the stroke survivor's Person-I Environment Fit Score. AMPLE ELECTT N F R E IE The initial goal was to select 10 cases for examination. The Activities of Daily living and Person-Environment Fit score served as screening devices used to determine which cases would be reviewed for case study analysis. For the 20 families, the first level of screening involved the review of the stroke survivor’ s ability to perform Activities of Daily Living (ADL) . Eight stroke survivors could perform all ADLs. Families in which the stroke survivor could perform all the Instrumental and Physical Activities of Daily living, meaning less physically demanding caregiving roles, were eliminated from the study. This reduced the sample from 20 to 12. For the remaining 12 cases, Person- Environment Flt Scores were tabulated with the following results: Person-Environment Fit Score Family Case Number 1 8 1 12 0 3 0 5 0 10 0 13 -2 7 -2 1 1 -2 17 -2 19 -3 18 -4 16 The two cases with a positive Person-Environment Fit Score indicated that the family had been able to create a good fit. These families were not analyzed so attention could focus on the 10 cases where person-environment fit was more problematic. Interview instruments for the cases with a 0 or less person- environment fit scores were pulled for case study analysis. D T ALY A code book was prepared for the variables identified at the beginning of this chapter. Ten copies were made for recording case by case information transferred from informant and caregiver interview booklets. A narrative was developed for each case as a summary of the variables. The format for the case studies was as follows: Genaal family description of stroke survivor and caregiver relationship Stroke Survivor: - Pre-stroke physical health - Post-stroke physical health - Capabilities for Activities of Daily living - Psychological and social adjustment to the stroke - Demographics. 81 Caregiver: - Demographics - Physical health - Psychological health (caregiver strain, caregiVer preparedness, help-seeking behavior, caregiver behavior) - Social and community network Housing Environment: analysis of person-environment fit - Suggestions for an improved person-environment fit A blank code book provided the framework for tabulating data for all cases on all variables. The information was categorized by Person-Environment Fit Score. Summary tables were prepared for item frequencies and open ended responses. A narrative of observations described the findings. With a small sample size and qualitative case study format for this study, neither parametric nor non-parametric statistical analysis would be appropriate forms of data analysis. Parametric statistics apply to larger samples than the 10 cases examined here. N on-parametric statistics can be used when the sample size is small, but requires randomized treatment be applied to more than one group (Lehmann, 1975). Descriptive statistics of frequencies and average V scores are more appropriate for this study; as is analysis of case study respons- es to open-ended questions. CHAPTER FOUR CASE STUDY SUMMARIES Families were selected for case study analysis based upon the Person- Environment Fit Score as defined in Chapter Three, Methodology. Summaries were prepared for families with either a score of zero or a negative score. This included ten families overall The format for the case studies was as follows: general case background, stoke survivor pre and post stoke physical and psychological health with post stoke behavior, caregiver physical and psycho- logical health including, caregiver stain, caregiving behaviors, and social net- work with help-seeking behaviors. Housing environments were described and person-environment fit assessed with possible changes suggested. a P -E ' nment Fit re our Famili flag 3 (Emu-Environment Fit Score = 0) The black couple in this case had been married for 36 years. The husband (age 57) was the stoke survivor. His wife (age 75), had a previous marriage with children, and was his primary caregiver. She was not very knowledge- able about her husband’s physical pre or post stoke condition or his past employment, which was surprising considering the duration of their 82 83 relationship. See Figure 4 for an illustation of this case. - Stroke Survivor: age 57, male, married Caregiver: age 75, female spouse SS Pro-Stroke: Aid: I Poor Balance Walker Arthritis \ Current Housing: Ranch Style, Basement SS POSt 31'0“: Steep Exterior Steps. Flight arm/leg no handrails Weakness Entire house needs unsteady repair! LOSS 0i Plastic floor runners Coordination Area rugs Loss of Speech Caregiver: . Heart problems. Can’t do lADL’s tires easily, low except phone; income. unaware of Can do all details of SS condi- Proposed: PADL's except LlLQn. Add ramp, hand rails, grab bars, remove walk or climb stairs without aids or help. clutter, area + rugs. plastic Person-Environment Fit runner, major Score . 0 home repairs, housekeeping core services. FIGURE 4: CASE 3 - Person-Environment Fit = 0 84 The stoke survivor was on disability leave from the Buick plant in Flint at the time of thestoke. Overall his physical health had been rated as fair before the stoke, but it did not impact on his ability to do the activities he wanted to do. The caregiver described his condition as ”off balanced” and provided no additional details. Arthritis was the only identified ailment. Since the stoke, the stoke survivor had weakness in his right arm and leg. An exercise bike was purchased to stengthen his limbs. Loss of coordination rendered him unable to write and unsteady or wobbly when using a walker. He had a heightened hot/ cold sensitivity, with circulation problems in his limbs, describing his skin as ”crawly”, causing a reaction when touched. He also complained of stomach problems. A speech impairment made communication difficult. I In terms of the Activities of Daily Living, he could use the telephone but either never did or could not do at this time all the other Instumental ADL’s. . He commented that light or heavy housework was women's work. For the Physical ADL’s, he could do all of them (bathing. eating, dressing, grooming, etc.) except for walking with an aid (walker) or climbing stairs with the help from others. The stoke survivor’ 5 mental health was rated as poor since the stoke. His outlook on life had turned negative and sometimes violent. He was able to problem-solve, but the caregiver felt he never had much common sense before or after the stoke. Refusing to accept the stoke occurred frequently with resentnent for having to use the walker. Appearing sad, tearful and describ- ing himself as useless were also quite common behaviors. He showed a loss of 85 appetite and seldom worked to improve his condition. His soda] network included his mother, daughter and grand-daughter. Visits from friends were desired but had rarely taken place reportedly due to his speech impairment. Church (Baptist) affiliations were not stong and other community network or services had not been tapped. Education attainment for both stoke survivor and caregiver was 5-8 years of schooling. The household income fell below $4,999. Basic needs were reportedly barely met. Medicaid was paying medical expenses. They were homeowners, but the home was in a poor state of repair (unevenly settled floors, cracks in walls, holes in bathroom wall with falling tub tiling and faucets barely functioning, etc). Their financial situation had not changed since the stoke. The caregiver felt their income was just enough, which sounded as though she had adjusted to living on less. Produce from her daughter’ 5 garden was canned and provided a lot of their food needs. The caregiver had been in fair health prior to her husband’s stoke. High blood pressure, heart trouble and bad knees were her primary ailments. The knee problem was new since her husband’s stoke. She fatigued rather easily, but when tired, she would rest and not worry about what was not getting done. ”There’s always tomorrow” seemed to be a common phrase for her. Since her husband’s stroke, weight had been gained, and the caregiver’ s doctor was encouraging weight loss. Other changes in eating patterns had not affected her at this time. There were three areas of stain noted on the Caregiver Stain Index (see Appendix A). Sleep disturbance was a problem that prompted a bedroom 86 change. The caregiver moved to the guest bedroom, but could still hear stoke survivor gettirlg up during the night for bathroom visits. Watching such a proud man have problems with walking and talking also had been upsetting and a stain to her. Her low Caregiver Stain Score was a 3 out of 13. Psychologically the caregiver worried about things very often even though she gave herself a good rating for emotional health. She found life pretty routine but satisfying overall. Expressing concern about the future, she did not think her husband was progressing as much as he could. She felt completely prepared for her caregiving role and for obtaining devices. However, she was not at all prepared to cope with a stoke, nor determining physical changes for her home. Overall her Caregiving Behavior Score (see Appendix A for explan- ation of the scale) averaged 3.55 on the questions where a 5.0 score indicated healthy behavior, and a 2.0 average score on the items where a score of 1.0 designated appropriate behavior. The caregivers social network included friends who had visited a few times a month. Her family (daughter and grand-daughter) provided assist- ance with bill paying, filling prescriptions, shopping and serving as confidant. The contacts for help-seeking were few and limited. Neither neighbors nor friends were contacted on a regular basis. Her Help-Seeking Score (see Appendix A for a description of the scale) was 1.75, with a score of 5.0 as active help-seeking behavior. Community services were not used. Their housing environment was a small two bedroom, one bath ranch style home with basement. As mentioned earlier, it was in disrepair and dirty. The caregiver expressed a problem with keeping the house up, but she was just 87 going to do the best she could. The home was quite warm in temperature, but was reportedly kept warm because of their age more so than the stoke survivor’ s temperature sensitivity that had developed since the stroke. Walk- ing was hampered by uneven floors and plastic runners used to keep carpeting clean. Stairs within the house led to the basement. Steep exterior steps met them at both front and rear entrances. Absence of hand rails made passage dangerous for all. Future housing plans did include installation of handrails, - but time and money would delay constuction. Overall they felt their home met their needs, and were satisfied with it since the caregiver indicated this would be their ideal home setting for the future. Providing independence and self sufficiency seemed to be its best virtue. Given the stoke survivor’ 5 physical condition, person-environment fit could be enhanced by cleaning and removal of plastic runners and area rugs. A ramp at one of the entances would prevent the reported problem with falling on steep stairs. They definitely needed to tap into a home repair project for low income elderly households. Repairs would bring the home up to safety codes. Bathroom grab bars added to toilet and tub area would be helpful since the stoke survivor had a problem with balance. Housekeeping services would benefit the caregiver because of her own ailing health. Qgg 5 (Mn-Environment Fit are: 0) Case 5 (See Figure 5) involved a (caucasian) couple who had been married for 56 years. The wife (age 83) and husband (age 87) and had owned the same house North of Flint for 30+ years. The husband suffered a stoke that affected 88 his left side, leaving weakness in both the arm and leg. Initially his speech had been impaired but had improved with therapy. He had been hospitalized three times for pneumonia since the stoke. Due to a lack of mobility, skin sores were becoming a problem. Prior to the stoke, he had reportedly been weak with poor health, exhibit- ing shortness of breath (emphysema) and dizziness (high blood pressure and circulatory problems) that interfered a great deal with his activities. A pace- maker had been implanted a few years back. Diabetes had been with him for 30 years and his loss of appetite since the stoke had complicated this on going problem. Cataract surgery a year ago had left his vision in fair condition before the stoke but vision was blurred since the stoke. Colon cancer, operated on two years ago, was another physical concern for the stoke survivor. Arthritis made life painful. The stoke left the stoke survivor mentally alert and able to communicate feelings and decisions. He was able to problem- solve and show common sense. He seemed to accept the stoke by not showing concern or sadness about his dependencies, but tied to assist when he could with Activities of Daily Living. Of the Instumental and Physical Activities of Daily Living, he could not do any ADL’s without assistance except he did have bladder and bowel contol. He required help with eating, dressing, grooming, walking, bed and toilet tansfer, bathing and all Instumental ADL’s. A home care agency provided some assistance with nursing care, bathing, dressing and exercising his left arm and leg. Help was also required with use of his wheelchair. 89 Stroke Survivor: age 87, male, married Caregiver: age 83, female spouse SS Pro-Stroke: Weak, Dizzy I Aid: 1 r Shortness of Wheelchai breath Pacemaker Diabetes Current Housing: Colon Cancer Ranch style, basement. Cataracts Clean, adequate in size. . Arthritis Ramp front entrance. No stairs rear entrance. Hospital bed moved to SS Post Stroke ‘ Iivingroom. Left Arm/Leg weak- Bedside commode. ness Overall weakness Caregiver: Pneumonia Good health \ Sharp mind Can NOT do any ADL except bladder 8r bowel control. ' Proposed: , a Widen bath- Person-Environment Fit room, Score a: 0 Add Grab Bars. Hydrolic L FIGURE 5: CASE 5: Person-Environment Fit Score = 0 The stoke survivor was retired with a combined income of $15,000-$19,000 that supported the couple. Their financial situation had not changed since the Stoke and all basic needs were reportedly well met. Financial concerns were 90 not an issue. His wife, the caregiver, was a spry 83 year old. A retired 4th and 5th grade teacher with a college degree, she had cared for both of her parents, who had suffered stokes, and they lived with her until their death. Recently a widowed niece (in her 60’s) had moved in with them for a few weeks to assist with lifting her uncle from bed to wheelchair. The caregiver’ 5 good physical health aided her energy level for providing care. Her only health problem was arthritis in hands and hips, but it did not seem to make her caregiving role difficult. Physical problems had not increased since the stoke and no new conditions had emerged. Reportedly the caregiver rarely worried about problems and indicated good emotional health that had not changed since the stoke. She accepted what was happening and progressed through life with prayer for stength along the way (she had a stong Methodist background). Feeling very prepared for her caregiving role certainly contributed to her calm demeanor and effective behavior in caring for herself as well as the stoke survivor (score on Caregiver Behavior Scale averaged 4.9 on items where 5 showed effective behavior and a 1.6 score on behaviors where 1 was effective behavior). Help-seeking came primarily from family, friends and neighbors plus the church. Visits from friends and family occurred as often as desired. Two daughters, one son, a daughter-in-law and grandson were identified as confidants and persons who could assist with personal care needs or stay with the stoke survivor. All lived in the community, with the grandson living next door. The caregiver had a low to moderate help-seeking score (averaging 2.5 out of 5) which implied that she sought help on a monthly or once or twice a 91 year basis, but not from a wide variety of sources. Concerns, as noted on the Caregiver Stain Index (low score of 2 out of 13), were few considering the severity of the stoke survivor’ 5 condition. Sleep was not a reported problem for the stoke survivor, but sleep disturbance was a stain for the caregiver. The other stain for the caregiver was a change in personal plans including not eating out as often as before the stoke, attendance at fewer church functions and not taveling to their summer cottage up north. Their modest four bedroom, one bath home was a ranch style unit with basement. A ramp had been built at the front door by the grandson upon the recommendation of the occupational therapist from the rehabilitation unit of the hospital. Also upon therapist recommendation, a hospital bed was obtain- ed. The size of the hospital bed forced them to move the stoke survivor into the living room. In spite of this bedroom shift, there were not any noted problems with privacy. The caregiver did indicate a problem in keeping up the home due to the exta cooking and cleaning involved with their niece living with them. Overall the caregiver felt their housing adequately met their needs in spite of a narrow bathroom, requiring the use of a bedside commode for the stoke survivor. No future housing plans were mentioned but the caregiver suggested an ideal housing set-up might include an apartnent with some assistance and family living close by. In summary it appeared that the caregiver was coping with her continued caregiving role in spite of the stoke survivor’ s intense ADL needs. An effective person—environment fit was achieved as much as possible given the short length of time (four months) since the stoke survivor left the hospital. If 92 they were to stay in the home, the bathroom should be widened with grab bars or hydraulic lift added, but this is an expensive endeavor. n- n ' nm n Pi = 0 Case 10 involved a (caucasian) couple in which the husband at age 64 was the stoke survivor and his wife, age 70 was his primary caregiver (See Figure 6). Prior to the stoke, the stoke survivor had been in fair health, and this interfered a great deal with his activities. He was afflicted by an intestinal bypass (stapled stomach), urinary tact infections, arthritis, high blood pressure and bad knees. The stoke caused weakness in the left arm and leg (”droopy foot” ), reducing his ability to help out around the house. A walker provided mobility support since loss of coordination and jerkiness of movement also made it hard for him to steady himself. Loss of coordination also impacted his ability to write. Although his vision had been good before the stoke, blurred vision now caused dizziness. He suffered memory loss as a result of the stoke. There was an occasional loss of bladder contol, but keeping a portable urinal handy had helped. This problem did prevent him from wanting to go out for such things as church attendance (Protestant). 93 Stroke Survivor: age 64, male, married Caregiver: age 70, female spouse SS Pro-Stroke: High Blood Pressure Arthritis Urinary Tract Infect. Intestinal Bypass SS Post Stroke: Current Housing: Left arm/leg weak- Ranch style ness. Dizziness. Good size, clean. clutter- Loss of Coordination, free, Jerkiness of move- One/two exterior steps. ment, Blurred vision, Moved office home. Occasional loss of Bladder Control Caregiver: Fair health ~ Osteoarthritis ADL: _ Hypertension Need help wrth _ . Can’t lift bathing. walking. Concerned about climbing stairs. husband’s business _ bladder control, housework, shop- ping, driving. Can do all others. Proposed: Grab bars. Homemaker \IPerson-Environment Fit Score = O chore servrces. FIGURE 6: CASE 10: low Caregiver Stain 94 The stoke survivor’ s ability to perform Activities of Daily living (Instumental). included use of the telephone and some meal preparation. He could shop and drive with the help of others, but he did not do housework or use public tansportation even prior to the stoke. For the Physical ADL’s, the stroke survivor needed help with bathing, bladder contol, walking and climbing stairs. All other ADL’s were handled by himself. In general his mental health was fair after the stoke. little things upset him. He was more impatient and easily excitable over minor issues. Irrit- ability and frustations with progress were reported, but he did work to improve his condition. Socially, friends visited the stoke survivor three or four times a week. Two daughters were cited as alternative caregivers in addition to a sister-in-law. One of the daughters mowed the lawn and shoveled sidewalks for them. No other outside services were utilized. The stoke survivor had a four year college degree. He had been a self employed full time insurance salesman and investnent broker before the stoke. The family income (for 2) ranged from $10,000-$14,000. All financial needs were reportedly well met. However, the stoke had made a financial impact since his business was not as active as it had been. He moved his office to their home to cut back on personnel and reduce expenses overall. This also provided an opportunity to work part time and rest as needed. His wife completed high school and was a homemaker, but she had an inactive real estate license. Her hypertension and osteoarthritis left her in fair health before her husband’s stoke. These afflictions caused problems with 95 lifting, so she could not lift her husband following the stoke. Performing housework was painful, and she had counted on her husband’s support for completing these tasks. Caregiving took on the role of additional work that the stroke survivor had once completed. She reported a problem with keeping up her home. A positive outcome was an improvement in her hypertension because she was preparing better balanced meals. Her present emotional health was rated as good, which was about the same as pre-stoke. Overall the caregiver was satisfied with life but did worry about things fairly often. She was fearful of the future should her husband regress and require nursing home placement. Preparedness for providing care was quite high on all accounts except when feeling fully informed about stroke. l-Ier caregiving behavior was not always healthy as noted by her average score on the Caregiver Behavior Instument of 3.0 when a 5.0 was healthy behavior, and 2.17 when a 1.0. was healthy behavior. She seemed to put the stoke survivor’ s needs above hers and did more for him than necessary at her own expense. The three items noted to cause the caregiver stain on the Caregiver Stain Index were sleep disturbance, making emotional adjustments and feeling overwhelmed. Her Caregiver Stain Index Score was low (3 out of 13). The interviewer noted difficulties with the interview including long pauses, lack of emotion, and cold responses. She seemed to seek isolation. Visits from friends were somewhat important, but she was very busy and did not want more visitors. The caregiver did not talk with anyone about her situation. She felt her two sisters and two daughters had enough of their own 96 concerns that she would internally handle her own problems. This was consistent with her average low score of 1.25 (with five as active) for help seeking behavior. She rarely visited with friends, family or neighbors. Weekly church attendance was high on her help-seeking list. They owned a three bedroom, two bath ranch style home. Location in a beautiful Grand Rapids neighborhood provided a view of an elementary school. The home was clean, neat and clutter free. The family room, which had an adjoining bath, became her husband’s office. No interior stairs impeded the stoke survivor’ s mobility. One or two steps were present at both exterior entances. They were satisfied with their home and had not made any environmental changes nor planned any for the future. Preferences were leaning toward staying in this home for as long as possible with additional outside help. A retirement home might be considered should their health warrant the move. Overall they seemed to be coping with their environment. Suggested housing changes might include bathroom grab bars to assist the stoke survivor with his loss of coordination since he handled his own grooming. Obtaining homemaker chore services would certainly assist the caregiver with routine needs given her physical concerns. 3% 13 (Person-Environment Fit Ere = 0) This case included a (caucasian) couple in which the stoke survivor was the 70 year old husband, and his 66 year old wife served as the primary Caregiver (See Figure 7). 97 Stroke Survivor: age 70, male Caregiver: age 66, female, spouse SS Pre-Stroke: Arthritis High Blood Pressure Circulation Problems Diabetes Hand Tremors Deteriorated Right Knee SS Post Stroke: Weakness Left Arm & Leg Loss of Coordination Heart Trouble Prostate Surgery Minor Speech Problem Inconfinence Poor Vision ADL: lADL: can Phone PADL: can not Bathe Self, Climb Health, Stairs, Bladder CG Strain 8 Control. Worries A lot Needs Aid for: Poor Helpseeking Walking, Toilet Transfer l Needs Help: Dressing. Person-Environment Fi Grooming Score = o Crutches ? / Aids: Cane, Walker Caregiver: Excellent Health Fair Emotional Current Housing: Ranch Style with Basement No Clutter 1—2 Exterior Steps Warmer Temperature Bedside Commode Added Higher Seat to Toilet 8r Lifting Lounge Chair roposed: t xterior Railings , amp FIGURE 7: CASE 13: Person-Environment Fit Score = 0 98 The husband had been on retirement disability since 1976 for a deteriorated right knee. He had suffered a minor stoke a number of years back, with no residual physical limitations. Other health conditions that existed prior to this stroke were arthritis, high blood pressure, circulation problems, diabetes, hand temors, and fair vision. Overall his health had been rated as fair, but it reportedly did not interfere with everyday activities. Since the stoke, he eXperienced weakness in the left arm and leg with loss of coordination. A cane, walker and crutches were used as mobility aids. Prostate surgery had occurred since the stoke and a heart condition had developed. His circulation was poor.and thus he was more sensitive to the cold, in spite of increased room temperature and wearing warmer clothing. A minor speech impediment and general hoarseness bothered the stoke survivor. His fair vision had turned to blurred vision, and he could not read for very long. He resented the caregiver reading to him. A memory change with loss of short term memory also was experienced. The stroke survivor reportedly suffered the humiliation of daily loss of bladder contol but not bowel Contol. This condition left him homebound for fear of an accident. Multiple bathroom trips during the day and night were exhausting for both the stoke survivor and caregiver. Increased laundry was another problem. With regard to the Activities of Daily living, the only Instumental ADL that the stoke survivor could handle was telephoning. For the Physical ADI..'s, he could not go up and down stairs, bathe himself or maintain bladder COrltol. With the use of an aid, he could walk and make toilet tansfers. He 99 required help with grooming and dressing, but could eat, get in and out of bed by himself, and maintain bowel contol. The stoke survivor’s mental health was rated as excellent by the caregiver, yet his outlook on life had changed. His ability to cope had changed. He was showing signs of depression: sleeping difficulties, loss of appetite, negative attitude, low motivation, irritability, crying spells, sad affect and suicidal tendencies. The stoke survivor was upset by the unfairness of stroke and his dependencies; sometimes resenting the good health of others. He occasionally worked to improve his condition, but resented using aids and devices. Socially, the stoke survivor had weekly visits from friends and family. A daughter, son and daughter-in-law were available to provide care. No outside community services were utilized. The stoke survivor had not completed high school. Income ranged between $15,000 and $19,999. Reportedly there were no financial worries, yet medical care was marked as ”not met” when all other financial needs including small luxuries were marked as ”well met". His spouse, the caregiver, was a 66 year old full time homemaker. She had 5—8 years of schooling. Her health was rated as excellent with no current problems. The caregiving role had impinged on her ability to exercise, but eating patterns had not changed. She was eating out less, and grocery shop- ping was rushed since she did not want to leave the stoke survivor home alone for long. The caregiver’ 3 mental health was rated as good but had worsened since her husband’s stoke. Finding life rather routine with a fair rating for life 100 satisfaction, the caregiver tended to worry a lot. Since it was her husband’s second stokeishe reported feeling prepared for contacting professionals, obtaining aids and the amount of time caregiving would take. However, she desired more information about what to expect with stoke recovery. According to the Caregiver Stain Index, this caregiver rated an 8 out of 13. She was stessed by the lack of sleep, the physical stain, caregiving being confining, changes in personal plans and emotional adjustments. Addition- ally, the caregiver was upset by the changes that had occurred with her husband since the stoke and his upsetting behaviors. She felt overwhelmed. Her Caregiving Behavior Score would support these feelings. She rated a 2.4 when 5.0 was healthy caregiving behavior and a 2.1 when 1.0 was healthy ' behavior. The stoke survivor’ s doctor told her that she was loving him to death. She would do too much for him to the detiment of her own needs. The caregiver would not let others provide any care for her husband, and she avoided contacting the doctor. The Help Seeking Behavior Score of 1.8 (with 5.0 indicating one who would seek help often and from a variety of sources) showed her limited help seeking network. Talking to friends weekly seemed to be her only outlet. Family, doctors or agencies were not contacted. Church was never attended. No community services were used. Their home was a ranch style unit with basement, that sat up on a hill next door to the farm they used to own and work. The house had three bedrooms and two bathrooms. It was clean and clutter free. One to two exterior steps Could be found at both exterior entances. Since the stoke, the house temper- ature had been kept warmer, a bedside commode was used, a higher seat was 101 . added to the toilet, and a lifting lounge chair was purchased. In general they were satisfied with the house and did not foresee any future housing changes. As long as she could continue to care for him, she would not place him in a nursing home. Overall, this caregiver was working herself rather hard. Planning for respite care would be in order, whether from family or the community. Suggested changes to the home might include exterior ramp constuction and stair lift to aid the stoke survivor with stair climbing. fig with a Nggative Person-Environment Fit Ere (Six Families) 7 n-Environment Fit = -2 Case 7 involved a (black) couple in their 70’s. The stoke survivor (age 73) was the wife with her husband (age 75) providing primary care (see Figure 8). Her stroke affected the left side of her body. This weakened both the arm and leg and caused a loss of coordination. Shoulder stiffness rendered great pain and limited use. Depth perception became a problem even though other vision concerns were not identified. Loss of bladder contol (three or more times per week) had increased cleaning and laundry responsibilities for this husband. Overall her health had been rated as excellent pre-stoke, not affecting activities at all. However, arthritis, high blood pressure, diabetes and Circulatory problems were the reported pre-stoke ailments. Her vision had been fair and not affected by the stoke. 102 - Stroke Survivor: age 73, female, married Caregiver: age 75, male spouse SS Pro-Stroke: High blood pressure Arthritis, Diabetes Circulation problems Aids: ‘ Cane _Wheelchair SS Post Stroke: Left arm/leg weak- ened , Shoulder stiffness Current Housing: Depth perception prob. Small home, cluttered. Loss bladder control Ranch SWIG. basement. Ramp secondary entrance. Adequate for needs. Caregiver: Fair health ADL; ' Stressed by house- Telephoning, hold responsi- Eating, bowel bilities control Daughters as net- Need help with all _JLQIK other ADL's A 'PTrrposed: Clutter re- Person-Environment Fit moval for ease in _ Score =- -2 maneuvering wheelchair. . FIGURE 8: CASE 7: Person-Environment Fit Score = -2 103 The stoke survivor’s ability to perform Activities of Daily living changed dramatically after the stoke. The only Instumental ADL that she could do was telephoning. For the Physical ADL’s, she could not handle personal grooming or bladder contol. Walking and climbing stairs required assistance from aids (cane and wheelchair) and others helping her use the aids. Dressing, bed and toilet tansfer necessitated help from others, but she could eat by herself and had bowel contol. Mental health for the stoke survivor was rated as good since the stoke, with her ability to make decisions and problem- solving capabilities in tact. Fortunately her memory also had not been affected. However, her outlook on life had reportedly been changed which impacted on coping mechanisms. She sometimes was sad and upset about the unfairness of stoke and her dependencies. Additionally she had a problem sleeping, being irritable and having a negative attitude. She seldom expressed acceptance of the stoke, and she reportedly did not always work to improve her condition. From a social resource perspective, the stoke survivor did not want visits from friends or family, but was visited weekly none the less. Two daughters provided assistance with nurturing, meal preparation and interior and exterior housework. No other community services were utilized. Five to eight years of school had been completed by the stoke survivor. She had always been a homemaker and her husband was now retired. Their income ranged between $15,000-$19,999 to support the two of them and had not changed since the stoke. A grandson was living with them in their small home in the Flint area, and he had his own income from social services. 104 Reportedly their financial resources did not meet or barely met their needs. They owned their own home and did not receive any assistance in paying housing expenses. The husband caregiver was 75 years of age and completed 0-4 years of schooling. His health before his wife’s stoke was rated as fair, but did not keep him from doing the things he wanted to do. No specific health problems were identified, nor a change in health status or pattern of exercise since the caregiving role began. No changes in eating habits, diet/ appetite or time involved in meal preparation or shopping were reported. Regular visits from family and friends were important to the caregiver, but he had not had visits from friends since his wife’ 8 stoke. Family made weekly visits and this attention was very important to him. A brother, sisters-in-law, daughters and a neighbor were identified as persons who provided a network of support. Help-seeking Behavior for the caregiver was an average of 2.88 out of five, seeking assistance from relatives, neighbors and the church (Baptist). He reported worrying very little about things and indicated good overall emotional health which had not changed since the stoke. His satisfaction with life was rated as fair, finding his days pretty routine. Getting out more often was an unfulfilled desire. Factors that contibuted to caregiver stain for the husband included lack of sleep and finding it upsetting to watch changes in his wife since the stoke Caregiver Stain Score was a 2 out of 13 indicating low stain. His caregiving behaviors wavered between healthy and unhealthy behavior (average score of 3.2 with five as healthy behavior, and 3.0 average score on items where a rating 105 of one was healthy). However, this husband was not accustomed to providing care and indicated that he was not at all prepared for the amount of time care- giving would involve. He did not have enough information on stoke, but felt completely prepared with regard to seeking health professionals, aids/ devices and making stuctural changes to the home. He was having problems caring for their home. His wife always did the housework, and this task was now overwhelming to him. Their home was small in scale (2 bedroom, 1 bath) and cluttered. There was little room to walk between furniture which would make navigating a wheelchair difficult. The bathroom was on the same floor as the bedrooms. No bedroom adjustments were made nor privacy problems reported. The only interior stairs in the home led to the basement. Exterior stairs were at both entances, but a ramp had been built at the secondary entance. The therapist had suggested the ramp, and the caregiver and grandson paid for and completed the constuction. Overall they were satisfied with the home and felt it adequately met their needs. No future housing changes were being planned. The caregiver felt this home was their ideal housing setting. In summary, this family seemed to be coping with the changes that came with stoke. The network and support from family and neighbors seemed to be working effectively, but the concern is how the network will hold up long term. Their housing environment generally was conducive to their person environment fit, but clutter removal would enhance mobility. 106 11: erson-Envir nment Fit re = -2 This case included an elderly couple (caucasian) in their 80’ s with a protective daughter who came to the house to provide additional caregiving. The stoke survivor was the husband/ father (age 85). His wife, the caregiver, was 82 (See Figure 9). Prior to the stoke, the husband had been in poor health which affected his activities somewhat. He was weak and easily fatigued by heart problems, high blood pressure, circulatory problems, asthma, prostate surgery and arthritis. The stoke caused weakness to his right arm and leg, but both legs were ineffective. These days he was primarily using a wheelchair versus his cane or walker. He needed help transferring to the wheelchair, and his daughter felt he could not be left alone. Loss of coordination prevented him from writing. The sense of touch had deteriorated, leaving limited feeling in his fingers. Poor circulation made him more sensitive to cold temperatures (legs cold and feet blue). His shoulder was painful but this was attributed to arthritis more so than the stoke. Loss of bladder contol was a problem once or twice a week. Diapers or pads provided protection when he could not reach the bathroom in time. Approximately once a month the stoke survivor would have touble with bowel contol. This contibuted to embarrassment for all and added laundry. Memory loss and a mild speech impediment also were ramifications of the stoke. In terms of Activities of Daily living, the stroke survivor could use the phone with assistance, but could not perform any other Instumental ADL’s. 107 Stoke Survivor: age 85, male, married Caregiver: age 82, female spouse Daughter came in to provide some care, in addition to outside agencies. SS Pro-Stroke: Heart trouble, fatigue High Blood Pressure Circulation Problems Asthma Aids: Prostate Surgery Cane/walker Arthritis Wheelchair SS Post Stroke: / Right Arm/Leg Current Housing: weakness Ranch Style, basement Loss Coordination 1-3 exterior stops & Poor Circulation railing Shoulder Pain Wide deor openings. Loss Bladder COH- Neat, clear, orderly. trol Increased temperature. Loss of Speech Added bathtub stool. ADL: Caregiver: Can use phone, can eat Peer Health 8 make toilet/bed 3 Heart Attacks transfers. Back Pain Help or aid needed for Arthritis Proposed: all other ADL’s Ramp front No bladder control entrance \ Grab bars 8: * * tolletln aids I Person-Environment Fit Score = -2I Continued home- i fit- maker services FIGURE 9: CASE 1 1: Person-Environment Fit Score = -2 108 For Physical ADL’s he could eat and make toilet and bed tansfers by himself. Dressing, grooming, bathing, bowel contol and climbing stairs required help from others. He used an aid to ambulate on flat surfaces. Bladder contol was the only Physical ADL cited that he could not do at this time. Since the stoke his mental health was rated as fair. He showed signs of depression but was a good, cooperative (sometimes placid) patient overall. Loss of appetite and feeling that his difficulties were short term were two areas of concern even though he had reportedly accepted the stoke and did recognize progress in his condition. Social resources for the stoke survivor included weekly visits from family and friends, especially his daughter. The community provided the following resources: personal care for bathing, dressing and physical therapy. He had completed 0-4 years of education and his wife had 5—8 years of schooling. Both were retired production line workers for General Motors in Flint. The household income ranged from $5,000-$9,999. They felt their financial needs were well met in spite of increased medical related expenses. The caregiver had been in poor health before her husband’s stoke. She had suffered three heart attacks. Providing care required increased rest between spurts of activity, or chest and back pain would bother her. Arthritis also made caregiving difficult. She had lost weight since her husband's stoke. By the time she prepared a meal, she was too tired to eat. Her daughter did the grocery shopping and occasionally completed the cooking. Since the stoke they had not eaten out or with friends, which previously had been a weekly 109 activity. Emotionally she felt stain in all items on the Caregiver Stain Index except two (financial stain and other demands on her time). This meant that she was overwhelmed, made emotional, personal and family adjustrrents, had physical stain and sleep disturbance. She also found the stoke survivor's condition upsetting (Caregiver Stain Index Score was a high stain score of 11 out of 13). With all of this on her mind she would often worry about their future. It was interesting to note, however, that she rated her emotional health as excellent and a good satisfaction with life in general, which had not changed since her husband’s stroke. She was not at all prepared for the amount of time caregiving would require. Additionally, she was not prepared to make housing changes, nor did she have enough information on the ramifications of stoke. The caregiver did feel somewhat prepared with seeking help and obtaining devices. Her care- giving behavior wavered between healthy and unhealthy actions. Her average score was 3.9 for the items where a five denoted healthy behavior and 3.33 where a one denoted healthy behavior. Her helprseeking behavior averaged 3.63, with five as active help-seeking behavior. She regularly sought out relatives and neighbors, spoke to doctors weekly, and attended church (Baptist) monthly. Visits from family and friends were reportedly very important to her. Since her husband’s stoke, she had only received visits a couple of times a month but this was as much as she wanted to see them. Socially, the caregiver was able to confide in her.sister and two neighbors. Her daughter and the cleaning lady provided additional 110 personal care. The caregiver was stessed by how her daughter gave orders and took over when she was around. The caregiver commented that she had been caring for her husband for a long time and felt she could handle things without her daughter’ 5 assistance. I The home they owned was a ranch style, 3 bedroom, one bath unit. Two short flights of stairs led to a basment. One to three steps could be found at the front and rear exterior entrances. A railing had been added to the rear steps. Addition of a ramp was being considered for the front entance. Doorways appeared wide enough for wheelchair accessibility. Two minor changes to the home included a stool added to the bathroom tub and increased home temperature to accommodate the stoke survivor’s increased sensitivity to the cold. Thanks to a housekeeper, the environment was neat, clean and orderly. In general they were satisfied with how the home met their current needs. No future housing plans were being made, but long term nursing home care might be considered for the stoke survivor. Housing suggestions for this couple might include the addition of grab bars and supportive toileting aids used to ease bathroom functioning. Addition of an exterior ramp would greatly improve wheelchair accessibility, if they are to remain in this home. Continued support services, private and public pay, would enhance this couple’ 3 independent living. Caregiver stain seemed to come partly from the caregiver’ s own physical complications and conflict with her daughter over a caregiving power stuggle. 111 17 n—Environm t Fit re = -2 The (caucasian) couple, who were identified as case 17, had the husband (age 70) as the stoke survivor (SS) and his wife (age 67) as his caregiver (see Figure 10). The husband’s pre-stoke health was rated as good by his wife in spite of hypertension, arteriosclerosis, circulation problems with the arms and legs, kidney touble and a compressed vertebra. Following the stroke he had uremia, kidney failure that was aggressively teated for two weeks. He lost a great deal of weight during this time. Complications from the stoke included weakness in the left leg and arm, loss of coordination, jerkiness of movement, stiff left shoulder and loss of circul- ation in the left hand (some fingers turned black). The above limitations caused difficulty in using a walker so a wheelchair was provided. His vision had changed but to what extent had not been diagnosed. In general he could not read or write since the stoke. There also was a loss of bladder and bowel contol, creating embarrassment with the changing of diapers. Urinary tact infections were becoming common place. A portable commode and urinal were used. He would not go out to visit friends or family for fear of an accident. He also experienced a sensitivity to hot and cold and a memory loss. With regard to the Activities of Daily living, the stoke survivor’ s abilities were quite limited. For the Instumental ADL’s he could only use the phone with help from others. The Physical ADL that he could perform by himself was eating. All other ADL’s (bathing, tansferring, grooming, etc.) required assistance, with bladder contol, bowel contol and climbing stairs as ADL’s he could not do at all. Help was requiredwith the wheelchair and walker. 112 Stoke Survivor: age 70, male, married Caregiver: age 67, female spouse Paid care-providers provide daily assistance (13 hours). SS Pro-Stroke: Hypertension Arteriosclerosis Aids: Circulation Problems Walker Kidney Problems Wheelchair Compressed Vertebra / Current Housing: Tri-level House - Family room converted to bed room. Added hospital bed and hide-a-bed for caregiver. Well kept, clean Large home 8: yard (hire out lawn work) SS Post Stroke: Left Arm/Leg Weakness Loss of Coordination Jerkiness of Movement Stiff Left Shoulder Loss Circulation 8: Sensitivity to Hot/Cold Loscs3 Blfdfer a 30"9' Added grab bars in show 0" '0 er and arms on toilet seat Interior 8 Exterior Steps Can use phone 8 eat. All other ADL’s require Excellent Health help 0' aids. Great strain over Caregiver: the great number and type of deci- sions to make. Froposed: Person-Environment Fit Move to Smaller Score a -2 Ranch Style —> Home FIGURE 10: CASE 17: Person-Environment Fit Score = -2 113 His current mental health was rated as good, but his wife expressed concern that he was not really communicating his feelings. Abilities to problem-solve, use common sense and cope had changed for the worse since the stoke. He frequently appeared sad, had low motivation with high frustation about his lack of progress. Loss of appetite was another sign of slow recovery. The stoke survivor reportedly had acCepted the stoke and would work hard to improve his condition. From a social perspective the stoke survivor wanted friends and family to visit, which they did weekly. His daughter and sister-in-law were identified as additional confidants and care providers. Case management, nursing care, physical therapy and personal care needs were being met by outside agencies. The stoke survivor had completed a four year college degree. At the time of the stoke he was a retired staff engineer from General Motors. His wife, who had a high school diploma, always had been a homemaker. Income for the couple ranged from $60,000-$69,000 and reportedly all financial needs were well met. Investment income was being used to pay for some of the health care, and this worried the caregiver. The caregiver was younger than her husband and was in excellent physical health before and after her husband’s stoke. Her major physical complaint was the lack of time for exercise (playing golf) since caregiving began. Her appetite had not changed, but all other food related issues had changed includ- ing improved diet, more cooking, more grocery shopping,and eating out less often. Psychologically, she was under a great deal of caregiver stain as noted by a 114 high score of 11 out of 13 on the Caregiver Stain Index. All but two stessors on the Caregiver Stain Index affected her. She found that sleep was disturbed and helping was inconvenient and a physical stain. It was confining, requir- ing family adjustnents and changes in personal plans. Emotional adjustments had to be made and she felt overwhelmed. Adjusting to the changes in the stoke survivor were upsetting. In spite of their relatively high income, a financial stain was reported. Time demands and work adjustnent were the two items that were not a problem. In spite of all the stain, her emotional health was reportedly good and had not changed since her husband’s stoke. She found life exciting but worried fairly often about the future. There were too many physical ”wait and sees” with the stoke survivor, leaving her on a decision ”roller coaster". The care- giver tied to keep a positive outlook, none the less. She was not at all pre— pared for: contacting health professionals, selecting devices or making changes to their home, understanding about stoke or the time involved with care- giving. Because of the extent of her husband’s needs she wavered between healthy and unhealthy caregiving behavior (average score of 3.4 with a 5.0 as healthy behavior and 2.33 when 1.0 indicated healthy behavior. . The caregiver’ 5 social network included relatives, friends, neighbors, church (Protestant) affiliates and the medical profession (average score of 3.5 with five indicating active help-seeking behavior). Visits from friends were very immrtant to her. They occurred 34 times a week, which was not often enough for the caregiver. She had six people (sister, two daughters and their spouses plus a neighbor) on whom she could depend for assisting with 115 personal needs or serving as confidants. Two nurse aids provided 13 hours of care for the stoke survivor during the day and early evening. They owned a well kept, ti-level home in a suburb of Flint. It had three bedrooms and two baths with stairs connecting all levels and exterior front steps. Their family room had been converted into a bedroom with hospital bed for the stoke survivor, and the caregiver slept on a hide-a-bed. This caused some removal and shifting of furniture. There was a bathroom close to the family room that had a few physical changes completed since the stoke. Grab bars had been added to the shower and ”arms” were placed around the toilet for ease of use. These changes were recommended by the therapist and a handout from the hospital. A handyman was hired to do the work. The caregiver complained of problems caring for the home, especially the outside mainterance. The large yard was too much for her. She had started to hire someone to complete these tasks which was an added expense since the stoke. Her future housing plans included a move to a smaller ranch style home or a condominium in the sunbelt. They had discussed this type of a move prior to his stoke, but discussions had not continued, and he was currently not able to make housing decisions. Given this couple’ s economic resources, a move would certainly improve the person-environment fit. A ti-level home for a wheelchair user made him a prisoner in the family room. Ramps would not be feasible within this stuc- ture. Within the constaints of their giver setting, it appeared that they were working hard to create an effective person-environment fit. The caregiver’ s stain seemed to stem from so many decisions in a limited amount of time. 116 19 n- vironm t Fi re = -2 This case was an interesting interaction between a black female stoke survivor and her caregive son (see Figure 11). She was 73 and he was 45. They were living in a well kept home in a low income neighborhood of Flint. The stoke survivor was the homeowner and her son and nephew were staying with her. A lot of immediate and exterded family either lived in homes within close proximity or walking distance. The mother had been in good health in spite of her pacemaker, high blood pressure, and arthritis before her stoke. The stoke weakeled her left arm and leg (circulation problems) creating a loss of balance, lack of depth percep- tion, neglect of the left side of her body and jerkiness of movement. A wheel- chair was in use when she was not in bed. A painful left shoulder created a difficult problem with bathing and dressing. The loss of bladder and bowel contol necessitated the use of a catheter and pads. The catheter provoked chronic bladder infections. The bowel problem required constant cleaning and increased laundry. Bed sores and her speech impediment also complicated her life. The stoke survivor required full care. She could not perform any of either the Instrumental or Physical Activities of Daily living. She was receiving nursing care, physical therapy and personal care. 117 Stoke Survivor: age 73, female, widow. Caregiver: age 45, son Outside ag'ercy provides daily care in addition to other local family. SS Pro-Stroke: Pacemaker High Blood Pressure Arthritis ——-<\\\\\\1‘; Ann , Wheelchair SS Post Stroke: Left Arm/Leg Weakened L/ Loss of Balance Lack Depth Perception Current Housing: Neglect Left Side Body Ranch Style, Basement Jerkiness of Movement Small, too many & big Painful Left Shoulder furnishings, area Loss Bladder/Bowel rugs. Control Clean, orderly. Bladder lnfectlons Warm temperature. \ Added hospital bed. i Required Full Care J Caregiver: Cannot Do ANY ADL’s Excellent 1 A * Heahh 31223.33.” ' Pronosed: chan 93 in Add EXI. Ramp g - Remove Area Mother s health. Rugs Remove Some ‘ Furniture - l ase Size of [Person-Environment Fit Score a -2 l negathroom Add Grab Bars Toileting Aids/ Lifts FIGURE 11: CASE 19: Person-Environment Fit Score = -2 1 18 On occasion she had memory loss, but in general her mental health was rated as good.’ She could make some decisions and problem-solve. Reported- ly her outlook on life had turned negative since the stoke. She sometimes expressed sadness, exhibited low motivation, and was upset about her depend- encies. The stroke survivor had problems accepting the stoke and reportedly did not work to improve her condition. Socially the stoke survivor had daily visits from friends and family which did cheer her up. Her family was lovingly giving back to her ”all the care she had so generously given to them through the years”. The stoke survivor had completed high school and had been a homemaker most of her life. She was a widow with an annual income of $10,000-$14,999, but her financial needs were reportedly well met. Her caregiver son lived with her. He was divorced with one child who resided with the mother. Having completed high school, he was employed full time in the evening shift for General Motors production. His income ranged betweer $40,000 and $49,999. ‘ In general his health was good with no specific reported problems. He missed execising with friends. His eating habits had not changed since his mothe’s stoke. Family members would care for the stoke survivor while he occasionally wert out to eat. His sister did the grocery shopping and the majority of the cooking. The caregiver’ 3 mental health also was rated as good, but this had become worse since taking on the caregiving role. His Caregiver Stain Index was 10 out of 13; therefore, strain was felt on all items except three (financial stain, 1 19 physical stain and increased demand on time). He found life pretty routine, and expressed a fair rating for satisfaction with life. Great frustations existed with his mother's limited progress, and he worried about he future and his own future physical health. The caregiver was not at all prepared for the amount of time caregiving would involve nor about the implications of stoke. likewise, selecting devices and considering housing changes provided a great deal of concern. His social network was very stong. The extensive family, friends and neighborhood comradeship provided daily companionship and respite care during this time of need. He said his family members had grown closer together since the stoke and wee jointly working for his mother’s benefit. Help-seeking behavior for the caregiver averaged a 3.94 with five as active help-seeking. He did not utilize his church (Baptist) or professional counseling in his help-seeking network. Their home was small and crowded with too many furnishings, yet quite clean relative to the other low income housing in the neighborhood. Siblings all assisted with housekeeping duties. Excessive furnishings made wheelchair maneuveability difficult. Area rugs wee on top of the carpeting in both the kitcher and living room. The house was a two bedroom, one bath ranch style unit with stairs to a basement. One to three steps could be found at both the front and rear exterior entrances. Two minor changes had been made to the living environment. A hospital bed was moved into the stoke survivor’ 3 bedroom, requiring furniture removal. Secondly, the house temperature was raised since the stoke survivor 120 was more sensitive to the cold. This caused aggravation for the younge residents. In geneal the caregive felt the house adequately met his mother’s needs, and he would not conside any otlre future housing arrangement. If the stoke survivor remained primarily bedridden, the current environ- ment would continue to meet her needs since nursing home placement was not a consideration for the family. If the stoke survivor gained stength and was using he wheelchair more often, then area rugs and some furniture should be removed for increased mobility. Bathroom changes would be in order includ- ing increasing its size (an expensive change) and the addition of grab bars, hydraulic lift and other toileting aids. A ramp would need to be added to one of the entances, probably the front. The environment would need to be adjusted with time to fit he changing needs. 18: n-En ' nmen Fit re =-3 This case involved a 90 year old widow (caucasian), who was the stoke survivor, and her 57 year old daughte (See Figure 12). They had lived togethe for many years. The daughter was employed full time as a nurse and handled he mother’ s primary care. Prior to the stoke, the mother’ 5 overall health was rated as fair and it interfered greatly with everyday activities. She had suffeed from rheumatoid arthritis, emphysema, heart touble, circulatory problems, allegies, thyroid problems, had hand temors and poor vision. 121 Stoke Survivor: age 90, female, widow Caregiver: age 57, daughte, single 88 Pro-Stroke: Rheumatoid Arthritis Aid: Heart Trouble Cane Circulation Problems Walker Emphysema, Allergies Wheelchair Thyroid, Hand Tremors / Poor Vision \ Current Housing: Two Story House SS Post Stroke: Int. 8: Ext. Stairs Weakness Right Arm,Leg Spacious; Kept Warm Sensative Rt. Side Removed Furniture Temperature Sensative Grab Bar in Shower Speech Problem &Garage Loss of Coordination Steel in Shower Jerkiness of Movement Prob. Judging Distances Change in Memory , Blurred\Vision Caregiver: , Excellent Health \5 Employed ADL: Needs help: w°"'°d, Dressing, Walking, CG Straln 8 Climbing Stairs; Heavy Housework Driving Person-Environment Fit Proposed: Score =- -3 Add Ramps OR Move to single story home Figure 12: Case 18 Person-Environment Fit Score = -3 122 The stoke had affected he right side, causing weakness in both the arm and leg. The right side was generally very sensitive she avoided being touched. Temperature sensitivity overall also was a problem. The stoke survivor exhibited loss of coordination, balance and jerkiness of movement. Judging distances was difficult. A cane, walker and a wheelchair were used for mobility. He poor vision was now blurred, making reading impossible. Short term memory had diminished, which was frustating for both the stoke survivor and the caregiver. I With regard to the Activities of Daily living, she could do most of both the Instumental and Physical ADL's. The stoke survivor required assistance with driving, heavy housework and shopping; plus dressing and walking. She could not climb stairs at all, which was a concern in their multi-story home. The stoke survivor’ 5 mental health was rated as excellent since she had somewhat adjusted to the effects of the stoke. She sometimes became frustat- ed when she could not do something, but geneally she was good natured with a positive attitude, no loss of appetite or loss of sleep. She worked to improve he condition. Showing common sense prior to the stoke, the stoke survivor was now having problems making decisions. He memory loss made he impatiert at times. Socially, the stoke survivor wanted and received weekly visits. Visits came from friends as well as he two daughters. No community services wee utilized for support or caregiving. In terms of education, the stoke survivor had 5-8 years of schooling. She had been the primary breadwinner of the family since he husband had been ill 123 most of his life. She inspected industrial parts and received a retirement income ranging from $30,000-$39,999. All financial needs were well met. The caregive, he daughter, was a single 57 year old. As mentioned previously she worked full time as a nurse at a nearby hospital. A two year degree had been completed in he youth. He income ranged from $20,000- $29,999. Physically the caregive was reportedly in excellent condition with no health problems. He biggest complaint was lack of sleep, followed closely by feelings of confinement. After working all day she would work most of the night at home getting about three hours of sleep. She listed her emotional health as poor with fair life satisfaction. She worried a lot about anything and eveytlring. In terns of being prepared for he caregiving role, she reported oveall preparedness on all items except for making changes to the home. For the Caregive Stain Index, she scored an 8 out of 13. She was stained by sleep disturbance, caregiving being confining, changes in pesonal plans, emotional adjustrrents, feeling ovewhelmed, having otlre demands on he time, finding he mother’s behavior upsetting and being upset about watching the changes take place in the stoke survivor’ 3 condition. On the Caregiving Behavior Scale, she scored a 2.9 when 5.0 indicated healthy caregiving behavior and a 3.4 when 1.0 indicated healthy behavior. The caregive felt guilty when othes wanted to care for he mothe. She put off he own needs, and did more for the stoke survivor since it took he mothe so long to do things for heself. Help-seeking behavior fit the patten of caregiver doing it all. He score 124 was a 2.4 with 5.0 being active help seeking from a variety of sources. She had giver up TV, friends and going out. Visits from friends took place a couple times a month and she indicated that she wanted visits to occur less often. Church did, howeve, continue to play a weekly role in he community outeach. The caregiver was Catholic. Prayer was he primary coping mechanism. The housing environment was a two story, three bedroom, two bath home. It reportedly was spacious and well kept, although the caregiver reported a concern about keeping things going. Interior and exterior stairs connected many floor levels. The interior temperature was kept warm which had increased utility expenses since the stoke. Recent changes made to the home included a grab bar added to the shower and a stool placed in the shower. Grab bars wee added to the garage wall to aid in getting into the home. A brothe-in—law installed the grab bars. Furniture was removed from some rooms to enhance wheelchair movemert. Oveall they indicated satisfaction with this housing situation and did not foresee a future move. Future changes to the home environment as specified by the caregive, might involve building ramps at both entances and obtaining a cleaning service. This family seemed to be functioning on borrowed time. It was not clear how long the caregiver could continue he schedule and lack of sleep. Reaching into extended community services might provide respite care, since it seemed evident that either the family had not provided caregiving assistance or the caregive was not allowing them to do so. A move to a single story home would aid in the problen with stairs and wheelchair mobility. 125 1 -En ' nment =-4 Case 16 involved an 89 year old (caucasian) mothe residing with he retired son and daughter-in-law who wee both in their mid-60’s (See Figure 13). The stoke survivor was the mothe and the caregive was the daughter-in-law, even though he husband played a key role in assisting with heavy lifting tasks. Before the stoke, the mothe had been living in he own home a few blocks away. A friend/ neighbor had been serving as a full-time paid caregive. After the stoke, the stoke survivor moved in with he son and the paid caregive continued to provide 40 hours a week of 9-5 weekday assistance. The stoke survivor’ s pre-stoke health was rated as fair, affecting he activities a great deal. Heart touble, high blood pressure, circulatory toubles, asthma, arthritis, diabetes and skin sores wee combined to cause great fatigue. The stroke rendeed weakness in her left leg and arm, and that coupled with loss of coordination, loss of depth peception and jerkiness of movemert. A wheelchair was used for mobility and she needed assistance tansfering to and from the chair. The limited use of he left hand made her spill things, and she could not pursue he lifelong pleasure of crocheting. To replace that task she was reading large print books since he vision had not been affected by the stoke. The stoke survivor had expeierced an increase in sensitivity to hot and cold temperature. Occasional low blood pressure and a thyroid problem wee new medical concerns since the stoke. There was no loss of bladde or bowel contol. She could not perform any of the Instumertal Activities of Daily living, but could do all PADL's with helpfrom aids or caregivers. 126 Stoke Survivor: age 89, female, widowed Caregiver: age 65, Daughter-in-law, married Husband provides some care and a paid care-provide gives 40 hours of sevice. SS Pro-Stroke: Heart Problems High Blood Pressure Circulation Problems Asthma, Arthritis Diabetes, Fatigue Skin Sores 4A SS Post Stroke: Left Arm/Leg Weakness Loss of Coordination Depth Perception Prob. Jerkiness of Movement Sensitive to Hot/Cold \ Could not do any lnst. ADL's Needed help or aids to do ALL Phys. ADL's l Aid: Wheelchair Current Housing: Living room on one level 8: kitchen, bedrooms, bath on a higher level (four steps). Added hand railing. Steps at Entrances. Clean, Spacious. House kept warm. Hospital bed added. Grab bar @ tub/toilet Caregiver: Arhythmia Problem with Lifting Stressed by mother-in-law's negative attitude Person-Environment Fit Score :- -4 Proposed: Add Ramp to Living Room Ramp @ Entrance Figure 13: Case 16 Person-Environment Fit Score = -4 127 He mental health was rated as fair. She had become rather argumentative and negative since the stoke. The unfairness of stoke and he dependencies were upsetting. The stoke survivor frequently appeared sad, sometimes making suicidal statements. Considering herself useless, she sometimes had a loss of appetite and difficulty sleeping. She seldom accepted the stoke and did not always work to improve he condition. Social resources primarily included family members. She rarely had visits from friends. The stoke survivor’ 5 daughter or grand-daughter were identified as additional caregivers. No otlre community resources were tapped, but their private pay caregive provided extensive help. The stoke survivor had completed 5-8 years of education. She was a widow with an income of less than $4,999. He needs were well met because of her children’s support. He son was retired with an income of $20,000- 29,999. Thee was no change in finances reported since his mother's stoke. His wife, the caregiver, who had a high school diploma, had always been a homemaker. The caregive was age 65 and had been in good health before he mothe-in-law’s stoke. She suffered from arrhythmia that was aggravated by the stess of caregiving. Lifting botheed her, but he husband was around to aid with groceries and the lifting involved with caring for his mother. The caregive complained about not having the freedom to exercise. They used to go walking togethe in the evening. He diet had. improved since she was preparing healthie meals for her mothe-in-law. Eating out less often was frustating for he since she was having to cook more often. She also was 128 grocery shopping alone these days, and she missed he husband’s compan- ionship and assistance with this task. In spite of all the assistance the caregive was receiving, she was expei- encing Caregive Stain in all categories except financial stain (Caregive Stain Index of 12 out of 13). She was feeling overwhelmed making emotional, physical and family adjustnents, and changes in plans and time demands. Her sleep was disturbed and caregiving was inconveniert. She worried about things fairly often and noted that he mental health had worsened (reportedly a fair mertal health rating) since he mothe-in-law had arrived in their home. She reported that life was pretty routine, but oveall she was satisfied with it. She felt that it was hard to be a mother to a mothe, and he mother-in-law’s negative attitude was fatiguing. She did not feel she would be able to cope without he husband or the paid caregive. He coping stategies wee using free time to its utmost by getting out of the house. She attended church social functions, and the couple worked togethe at a low income soup kitchen once a week. Craft projects and prayer wee also coping mechanisms. Because of the stoke survivor’ s past health problems, the caregive felt prepared for all aspects of the caregiving role. She was well informed about stoke. He caregiving behavior averaged 4.3 with five as healthy behavior and a 2.67 when one indicated healthy behavior. He help-seeking behavior aveaged 294 with five as active help-seeking. She sought out family, neighbors, friends, church (Protestant) affiliates and the medical profession. Visits from others were very important to her. Even 129 though they occurred three to four times a week, she prefered them to be more ofter. A daughter and sister-in-law wee available to provide respite care. They owned a clean spacious three bedroom house in the suburbs of Flint. The living room was four steps down from the rest of the home. Kitchen, bedrooms and the one bath wee all on the same level. A hand rail had been added to the living room stairs. One to three steps wee found at the primary and secondary exterior entances. Physical environmental changes that had been made by the son included hand rails in the bathtub and grab bars by the toilet. A hospital bed had replaced the guest bed for the stoke survivor. The home was kept warme than usual because of he increased sensitivity to cold temperatures. They did not foresee any future changes being made to the house. In general the housing arrangement was working out, but the stoke survivor was so negative that it was hard to tell how satisfied she really was with the set-up. The family had considered possible nursing home placement should he condition worsen. Potential physical changes to be made to the housing ervironment could include the addition of a ramp to part of the living room stairway. A ramp also would be of assistance at one of the entances since the stoke survivor spent most of he time in the wheelchair, and she was the only case where a stoke survivor had used a wheelchair before the stoke. Caregive strain seemed to stem more from the stoke survivor’ 5 negative and argumentative nature vesus physical caregive stain. CHAPTERFIVE SUMMARY OF FINDINGS AND DISCUSSION Data from the ten case studies was compared according to person- environment fit scores. Four families had zero peson- environment fit scores and six cases had negative person- environment fit scores (p-e fit). This chapter summarizes the findings for the three research questions and the related variables as defined in the Methodology Chapter. RESEARCH QUESTION (1): What is the relationship between peson- environment fit and selected demographic and physical characteristics of the stoke survivor? DEMOGRAPHIC CHARACTERISTICS OF THE STROKE SURVIVOR The review of demographics for the two groups included the variables of gender, race, age, marital status, education, employment, and spouse employ- ment. Table 1 summarizes these frequencies by p-e fit score. Only two variables Show a tendency toward more effective p-e fit. These were gender and marital status. For all cases where the p-e fit score was zero, the stroke survivors wee male and married. Spouse employment showed the wives of these stoke survivors to be eithe frrll time homemakes or retired from past employment. The finding of marital status to be related to p-e fit was consist- ent with the findings of DeJong and Branch's (1982) study of stoke patient’ 5 130 131 ability to live independently. TABLE 1 Frequencies of Select Demographics For the Stoke Survivor by Person-Environment Fit Score DEMOGRAPHICS PERSON ENVIRONMENT FIT SCORE Negative Score(n=6) Zero Score(n=4) Gende Female 4 0 Male 2 4 Race Caucasian 4 3 Black 2 1 Exact Age 70 57 73 64 73 70 85 87 89 90 Marital Status Married 3 4 Widowed 3 0 Education 0-4 years 1 0 5-8 years 3 1 high school incomp. 1 2 4 yr. college 1 1 Employment Employed Full Time 0 1 Homemaker 2 0 Retired 4 2 Disabled 0 1 Spouse Employment Full-time Homemaker 1 Retired 2 2 In terms of age, the negative p-e fit group was in the 70 and 80 age range 132 with one 90 year old; wheeas the otlre group showed a broader range of ages, from 57.87 years. More olde individuals wee in the negative p—e fit group (average age of 80 years vesus 69.5 years). Education and employment variables did not show any tends for p-e fit. Both groups showed a wide range of education as noted in Table 1. For employment, only one stoke survivor had been employed. He was in the zero p-e fit group. All other stoke survivors wee full time homemakers, retired or on disability leave from employment at the time of the stoke. With regard to financial resources, Table 2 shows income and numbers of persons supported by that income by p-e fit score. TABLE 2 Stoke Survivor Income and Number of Pesons Supported on the Income by Person-Environment Fit Score PERSON-ENVIRONMENT FIT SCORE Negative Score (n=6) Zero Score (n=4) INCOME $4,999 or less $5,000-$9,999 $10,000-$14,999 $15,000-$19,999 $30,000-$39r999 $60,000-$69,999 NA 1 l—Il—IOH leHp—lp—ts—I Numbe of Pesons Supported on the Income One Two NA 0300 1 2 1 A wide range of income was reported by both groups. The negative p-e fit 133 group had income ranging from less than $5,000 to $70,000, and the zero p-e fit group had income ranging from $5,000 to $20,000. All cases but one in the negative p—e fit group indicated that their food, housing, clothing, medical and small luxury needs were well met by their financial resources. Two—thirds of the zero p—e fit group also reported these needs wee well met. Financial ability to make housing changes seemed more evident for the negative p-e fit group than their counterparts. PHYSICAL CMCTERISTTCS OF STRQKE SURVIVOR When reviewing the physical characteristics of the stoke survivor three broad areas were addressed. These areas involved pre-stoke health, post stoke physical limitations and the stoke survivor's ability to perform the Activities of Daily living. Pre-Stoke Hgalth For pre-stoke health, seven conditions reoccurred among the cases in question. In order from highest to lowest frequency of occurrence the conditions included arthritis, high blood pressure, circulation problems with limbs, heart touble, diabetes, urinary tact disorders and emphysema or asthma. These findings are consistent with those of the American Heart Association (1987), excluding arthritis which has more association with aging than stoke. Table 3 summarizes the frequency of conditions by p-e fit score. 134 TABLE 3 Pre-Stoke Physical Conditions for the Stoke Survivor by Person-Environment Fit Score PRE-STROKE CONDITION PERSON-ENVIRONMENT FIT SCORE Negative Zero Total n=10 Arthritis 5 4 9 High Blood Pressure 5 3 8 Circulation Problems 5 2 7 Heart Trouble 4 1 5 Emphysema or Asthma 3 1 4 Diabetes 2 1 3 Urinary Tract Disorders 1 1 2 Stoke Survivors from the negative p-e fit group averaged 4.17 pre-stoke ailments in contast to 3.25 ailments for their zeo p-e fit counterparts. This may imply that some families were experiencing problems with peson- environment fit prior to the stoke, and the stoke may have compounded the problem fit. Oveall as shown in Table 4, pre-stoke health of the stoke survivor was ranked by the informant from poor to excellent with health interfering from not at all to a great deal. No clear cut conclusions could be made between the two groups. Health interfered a great deal with activities before the stoke for half the sample in both groups. 135 TABLE 4 Pre-Stoke Oveall Health Rating and Health Interfeence with Activities by Person-Environment Fit PERSON-ENVIRONMENT FIT Overall health of SS Negative Score (n=6) Zero Score (n=4) before stoke: Poor 1 1 Fair 2 3 Good 2 0 Excellent 1 0 , Health interfered with activities before stoke: Not at all 1 2 A little 2 0 A great deal 3 2 W Emerging patterns among frequencies of post stoke health conditions for the stoke survivors showed the negative p-e fit group to have more limitations than their counterparts. However, very debilitated patients existed in both p-e fit groups. Table 5 tabulates frequencies of specified post stoke conditions. Disabling conditions were consistent with expected post stoke conditions, as listed by the National Stoke Association (1987). All stoke survivors had some reported weakness in eithe the right or left limbs. The majority in both groups wee impaired on the left side or right brain hemisphee. The negative p-e fit group showed more physical limit- ations than their counterparts for the following characteristics: loss of coor- dination, jerkiness of movement, problems judging distances, memory loss, and loss of bladde and/ or bowel contol. The zero score p-e fit group report- edly had more vision problems than the otlre group. 136 TABLE 5 Frequencies of Post Stoke Physical Conditions by Peson-Environment Fit Score POST STROKE CONDITTONS PERSON-ENVIRONMENT FIT SCORE Negative Score (n=6) Zero Score (n=4) Weakness in arms or legs 6 4 Left leg only 1 0 Left arm and leg 3 3 Right leg only 0 0 Right arm and leg 2 1 Change in feeling sensations: 2 2 Loss of coordination: 6 3 Jekiness of movement: 5 1 Shoulder problems: 4 1 Problems in judging distances: 4 0 Change in vision: 1 3 Change in memory 5 2 Loss of speech 2 2 Loss of bladde contol: 4 2 Loss of bowel contol: 3 0 The degree to which physical problems impacted upon the stroke survivor’ s ability to function independently has been explored in their ability to perform the Activities of Daily living. Agg’vitig of Daily Living The Activities of Daily Living (ADL) (Katz, Ford, Moskowitz, Jackson, Jaffe, Cleveland, 1963) is a format for ranking an individual’s Instumental and Physical capabilities for eveyday functions. The stoke survivor’ s compet- encies for each of the activities wee ranked by the ordinal scale: needed help before, cannot do now, can do with aids, can do with help or can do without help. 137 In general for the Instumental ADL’s, persons with a negative p-e fit could not drive, use public tansportation, shop, prepare meals or do any housework. One stoke survivor in this group was able to do light housework and prepare meals if assisted. One third of the group could not use a telephone at all, one third needed help and the remaining individuals did not require assistance with the phone. Their counterparts with zero p—e fit scores had the same geneal limitations. However, one person was able to prepare some meals and shop with assistance. Only one person was unable to use the phone. For the Physical ADL’s, the categories of eating, dressing, grooming, bed and toilet tansfe plus bladde and bowel contol wee addressed. Only one person in the study could not handle any of the ADL's, and this person was in the negative p—e fit group. With regard to eating for the rest of the sample in both groups, the majority of the stroke survivors could eat without assistance. One peson in each group required some help with eating. For dressing and grooming, all pesons in the negative p-e fit group required some assistance, wheeas half of the zero p-e fit group needed help. For bed and toilet tan- sfers, half of both groups reportedly needed help. As mentioned earlier, more persons in the negative p—e fit group had difficulties with bladde and/ or bowel contol. Oveall, the Physical ADL’s wee accomplished by more of the zeo p-e fit group. Howeve, persons requiring a great deal of care existed in both groups. The ability of the stoke survivor to ambulate was the key element tabulat- ing the peson-ervironment fit score. Table 6 summarizes the sample’s capabilities for walking and climbing stairs. 138 TABLE 6 Performance of Activities of Daily living for Ambulation by Person-Environment Fit Score AMBULATTON ADLs PERSON-ENVIRONMENT FIT SCORE Negative Score (n=6) Zero Score (n=4) Walk on level surface Needed help before 0 0 Cannot do now 1 0 Can do w/ aids 2 2 Can do w/ help 3 2 Can do w/o help 0 0 Go up and down stairs Needed help before 0 0 Cannot do now 3 2 Can do w/ aids 2 0 Can do w / help 1 2 Can do w/o help 0 0 As noted in the table, all person in both groups eithe could not walk or climb stairs at all, or they required aids or human assistance to get around. fix of Aids for Ambulation All stoke survivors used one or more aids for ambulation. Table 7 summarizes the type of aids used by each of the p-e fit groups. Table 7 Types of Ambulation Aids by Person-Environment Fit Score TYPE OF AID PERSON-ENVIRONMENT SCORE Negative Score (n=6) Zero Score (n=4) Cane 3 1 Walker 3 3 Crutches 0 1 Wheelchair 6 1 139 All of the stoke survivors in the negative p-e fit group used a wheelchair for ambulation as compared to only one person in the othe group. Canes and walkers wee heavily depended upon by pesons in both groups. One person in the zero p-e fit group reported the need for assistive aids not currently owned. Four of the six persons in the negative p-e fit group required help when using ambulatory aids. This compared to one of four stoke survivors in the zeo p-e fit group. Ph ical aract 'sti f the H usin Environment Descriptions of the current physical environments included specific housing characteristics such as tenure and residence issues, design, layout, number of roorrrs and presence of stairs within and on the exterior of the home For housing tenure, eithe the stoke survivor or the caregive was the home- owne. None of the families wee renting their dwelling. All caregivers lived with the stoke survivor, and only one stoke survivor had made a move to this home since the stroke (negative p-e fit group). Two caregives in the negative p-e fit group and one caregive in the zero p-e fit group reported family members living with othe olde family membes as a family tadition. Hfling Chgagjgm’ tigs for Ambulation All zeo p-e fit families resided in single story, ranch style homes, with basemerts. For the negative p-e fit group, three families wee in ranch style homes and the othe three had more interior stairs including two, two-story homes and one ti-level unit. All of the homes had one or more steps at the main entance and one zeo p-e fit family had built a ramp over the stairs. Two families in the negative p-e 140 fit group did not have stairs at the secondary entance, but all others in both groups had stairs. One negative p-e fit family constucted a ramp at the secondary entance. Five families in the negative p-e fit group and two families in the zero p—e fit group had made changes to the inside or outside of the home. Changes for the negative p—e fit group included: ramp added to back entance, railings on stairs, stool in bath tub, grab bar by toilet or in the showe, and the shifting or . removal of furniture. All of these changes were self financed. One handyman was used to make the changes; other households relied on family members. A therapist provided input into these changes. For the zeo p-e fit families, a ramp was added to the front of one home, and was self financed and constucted by family members based upon consult- ation with a theapist. Other housing changes made by this group included: the raising of a toilet seat, and the purchase of a reclining, lift chair. Changes made to all homes were consistert with constuction code (Michigan Barrie- Free Constuction Code, 1987) and general design guidelines for disabilities (National Stoke Association, 1988; Raschko, 1982). Other Housing Characteristics Most homes had two or three bedrooms, with one zero p-e fit family living in a four bedroom home. For the integenerational households, the number of bedrooms was consistent with Newman’s (1976) findings that these families usually had three or more bedrooms. Two-thirds of the homes had one bath- room, with one third of both groups having two bathrooms. In all cases bath- rooms wee located on the same floor as the sleeping quarters of the stoke 141 survivor. In cases whee bedrooms wee shared, they wee shared with spouses. No privacy problems wee reported. Bedroom adjustnents wee made in most of the cases. Adjustnents made in the negative p-e fit households included: a hospital bed moved to the family room and the caregive slept on a hide-a-bed; a hospital bed replaced a regular bed; and bedside commodes wee used. Zero p-e fit homes experienced the following bedroom adjustnents: a hospital bed moved to the living room; spouse moved from shared bedroom to guest room; and bedside commodes in use. Housing Satisfaction and Futurg Housing Pla_r§ Future housing plans were proposed by three families in the negative p—e fit group and only one family in the othe group. The negative p-e fit group reported the desire for the addition of exterior ramps and a move to a ranch style home as their future plans. The zeo p-e fit family only requested the addition of handrails. All cases indicated their housing environment adequately met the stoke survivor's needs. A high level of housing satisfaction is consistent with the findings for housing satisfaction and the eldely population (Golant, 1982; Weaver & Ford, 1988) and for disabled family members (Pech, 1983). All zeo p-e fit families felt the stoke survivors wee satisfied with the housing situation. Four of the six negative p—e fit families felt the stoke survivor was satisfied with the living situation. For this group, half of the stoke survivors were not able to make housing decisions, and all wee capable of doing so before the stoke. 142 RESEARCH QUESTION (2): What is the relationship between person-environment fit and selected caregive characteristics for these families? DEMOGRAPHIC MIEESIQ OF CAREGI!E_P§ Demographic characteristics of caregivers included: gender, relationship to the stoke survivor, race, age, marital status, religious affiliation, education, employment and financial resources. All variables excluding financial resources have been summarized in Table 8 ,and are categorized by person - environment fit score. ' As anticipated most of the caregives were female, with two males serving as caregivers in the negative p-e fit group. With regard to the caregiver’ 5 relationship to the stoke survivor, all caregives in the zero p-e fit group wee spouses, similar to the findings by Springer and Brubake (1984). Half of the negative p—e fit group were spouses, and the other half were adult children. More caucasian families than blacks wee a part of the case analysis. Age of the caregives ranged from the mid 40’s to early 80’s . The average age of all spouse caregivers was 73 years, and the average age of adult children caregives was 55.6 years. The aveage age of the negative p-e fit group was 63.5 years in comparison to the zeo p-e fit group whose aveage age was 73.5 years. All caregives in the zero p-e fit group wee married to the stoke survivor. Most caregives wee married in the othe group, excluding the one adult child who was single and the adult child divorcee. 143 Table 8 Frequencies of Select Demographics for Caregivers by Person-Environment Fit Score DEMOGRAPHICS PERSON-ENVIRONMENT FIT SCORE Negative Score (n=6) Zero Score (n=4) Gende Female 4 4 Male 2 0 Relationship to SS Spouse 3 4 Daughter 1 0 Daughte-in-law 1 0 Son 1 0 Race White 4 3 Black 2 1 Exact Age 45 66 57 70 65 r 75 67 83 75 - 82 Marital Status Single 1 0 Married 4 4 Divorced 1 0 Religious Affiliation Protestant 5 3 Catholic 1 0 Education 0-4 years 1 0 5-8 years 1 2 . high school completed 3 1 1-3 years college 1 0 4 years college 0 1 Employment Homemake Full-time 2 3 Retired 2 1 Employed Full-time 2 0 Religious affiliation indicated the majority for both groups to be Protestant, with one Catholic in the negative p-e fit group. All caregives except one from 144 the zeo p-e fit group indicated a religious affiliation. Oveall this finding is consistent with those of Legare (1980), who linked providing care with any religious affiliation regardless of denomination. Educational backgrounds of the caregivers wee varied and for both groups education ranged from 5-8 years to completion of a college degree. One of the negative p-e fit caregives had 0-4 years of education. Regarding employment, all but two caregives wee eithe retired or full time homemakers. Two of the adult children in the negative p—e fit group wee employed full time. These two also indicated problems with caregive strain, which fits Robinson’s (1983) prediction of more strain for younge and employed caregives. Table 9 reports caregive income, the numbe of pesons supported on the income, changes in financial situation since the stroke and income adequacy, sorted by the peson-environment fit score. Geneally speaking, financial situations had not changed since the stroke, except for two families in the negative p-e fit group. In open-ended responses, negative p-e fit caregivers reported financial concens in spite of their highe incomes and financial resources. One negative p-e fit caregive noted a drop in income since the stroke survivor had been self employed prior to the stroke and was now only working part-time. Anothe negative p—e fit caregive expressed concen ove the use of investment income to pay for private attendant care and home care. Highe income families could deplete their resources more rapidly than othe families since they do not qualify for many state supported services (Schultz, 1985). Lowe income families are used to living on less and doing without, and may not feel the 145 financial changes that a highe income family might experience. The caregives in the zero p-e fit group geneally had lowe incomes than their counterparts. Half of the zeo p—e fit families reported financial resources to be just enough to meet basic needs. All othe families eithe reported no financial worries or reported they had income for extra amenities. TABLE 9 Income and Number of Pesons Supported, Changes in Financial Situation and Income Adequacy by Peson-Environment Fit Score. PERSON-ENVIRONMENT FIT SCORE Negative Score (n=6) Zeo Score (n=4) Income $4,999 or less 0 l $5,000-$9,999 1 0 $10,000-$14,999 0 2 $15,000-$19,999 1 l $20,000-$29,999 2 O $40,000-$49,999 1 0 $60,000-$69,999 1 0 Numbe of Pesons Supported on Income One 2 0 Two 2 Financial situation changed since stroke: Yes 0 No 4 4 Income is: Not enough 0 0 Just enough 0 2 Some Extras 4 0 No Financial Worries 2 2 PHYSICAL CHARACTERISTICS op CAREGNERS Physical characteristics for the caregivers included a rating of pre-stroke health, health standing in the way of activities, current health problems, any 146 increases in physical problems or new ones since the stroke. Caregiver’s pre-stroke health reportedly ranged from fair to excellent for both p-e fit groups. One negative p-e fit caregives reported poor prestroke health. Table 10 summarizes this variable. Table 10 Caregive Health Before Stroke by Person-Environment Fit Score PERSON-ENVIRONMENT FIT SCORE Negative Score (n=6) Zero Score (n=4) Health Before Stroke Poor 1 0 Fair 1 2 Good 2 1 Excellent 2 1 Oveall, caregive pre-stroke health ratings wee similar to national figures for reported fair and poor health (AARP, 1987). Geneally speaking, the younge caregives wee in better health than their olde counterparts. For those who wee ailing, howeve, the variety of ailments varied, as noted in the case studies. Oveall, health did not reportedly interfee with activities. Two of the six caregives in the negative p-e fit group had health problems that made caregiving difficult. These health problems had been exacerbated since taking on the caregiving role. No new ailments had developed. Four of the six caregives noted a problem with caregiving affecting their ability to get out and execise. For the zero p-e fit group, one caregive reported that he physical problems had inter-feed with routine activities before the spouses’s stroke. Since the stroke, three of the four caregivers noted physical problems, but 147 conditions had not increased in severity. Only one caregive felt the physical problems interfeed with aiding the stroke survivor. One caregiver reported experiencing new physical problems since the caregiving role began. Inability to execise was a concen for anothe caregiver. In summary, half of the caregives from both groups had health related problems impacting on the care providing role. This is similar to Springe and Brubaker’s (1984) research findings. Changes in eating or meal preparation habits for the caregives did not show any specific trends between the two p—e fit groups. Table 11 shows the frequencies for changes in the following items since the stroke: amount of food eaten, how well balanced the meals wee, weight or appetite change, time spent shopping or preparing meals, eating out or eatingwith friends. Table 11 Changes in Eating or Meal Preparation Patterns for Caregivers Since the Stroke by Person-Environment Fit Score PERSON-ENVIRONMENT FIT SCORE Negative Score (n=6) Zero Score (n=4) Yes No Yes No Change in amount of food eaten: 2 4 0 4 Weight or appetite change: 1 5 1 3 Change in how well balanced the meals are: 2 4 1 3 Change in time spent grocery shopping and preparing meals: 4 2 1 3 Change in how often eat with friends: 2 4 2 2 Change in how often eating out: 4 2 2 2 For the negative p—e fit group, four of the six caregives reported changes in 148 the amount of time spent shopping and preparing meals plus a change in how often they ate out. For the zeo p-e fit group, half of the sample noted changes in how often they ate with friends and how often they ate out. usLoAI‘L "-qu 0F .- IVE Psychological characteristics encompassed pre and post stroke mental health, plus the degree of worrying and satisfaction with life. Preparedness for caregiving, caregiving behavior and help-seeking behavior also were explored for the two groups. All of the zero p-e fit caregivers and half of the negative p—e fit group reported good emotional health. The other three negative p—e fit caregivers each reported present enotional health as excellent, fair and poor. In all zeo p-e fit cases emotional health had not changed since the stroke. The majority of the negative p-e fit counterparts reported that emotional health also had not changed since the stroke, but two caregives indicated their emotional health had worsened. All but one of the caregives felt life was pretty routine. One negative p—e fit caregive rated life as exciting. Half of the caregivers in both groups rated satisfaction with life as good and the othe half rated it as fair. The amount of worrying the caregives experienced varied widely for both groups. One caregive in both groups hardly eve worried, but the rest of the individuals wee split between worrying fairly often or vey often. On the issue of preparedness, caregivers rated themselves on the following items: seeking help from health professionals; finding information about aids/ devices and physical changes for the home; finding someone to make the 149 changes; the time involved with providing care; and knowing about stroke. An ordinal scale was used to measure preparedness, which was collapsed into three categories: not prepared, somewhat prepared and vey prepared. Table 12 summarizes the frequencies for caregive preparedness for the six items categorized by peson-environment fit score. TABLE 12 Caregive Preparedness for Six Items by Person-Environment Fit Score PERSON-ENVIRONMENT FIT SCORE Negative Score (n=6) Zero Score (n=4) NP SP VP NP SP VP PREPAREDNESS Knowing whom to contact: 2 l 3 1 0 3 Knowing what aids or deviceswereneeded: 2 l 3 0 0 4 Knowing what changes to make to inside or outside of house: 3 1 2 ' 2 2 0 Finding someone to make changes: 4 0 2 1 0 1 Amount of time caregiving would take: 4 1 1 0 O 3 Having information about stroke: 4 0 2 2 1 1 TOTALSCORE: 19 4 13 5 3 12 NP: not at all prepared or a little prepared SP: somewhat prepared VP: very prepared or completely prepared Preparedness varied for both groups depending upon the item in question. The negative p-e fit group seemed less prepared on most of the issues than their counterparts, but no clear cut patterns emeged as did in the othe group. Half of the group wee vey prepared to contact professionals and obtain aids 150 or devices. Half of the caregives in the negative p-e fit group wee not prepared to make housing changes, with the majority not prepared to contact someone to make the housing changes. The majority of this group also wee not prepared for the amount of time caregiving would require; nor did they have enough information about stroke. The divided reactions could be explained by the mixture of caregive characteristics that make up the group. Males and females wee represented with varying education, employment backgrounds, and they wee spouses or adult children. The zero p-e fit group seemed more prepared for most issues. The majority wee vey prepared for the amount of time caregiving would require; for knowing who to contact for assistance; and for obtaining aids or devices. They were less prepared for making housing changes. Half of the group wee not prepared with enough information about stroke or knowing who to contact to make housing changes. All of these findings are in line with the literature. These caregives wee female spouses, who had been full time homemakes or wee retired, and had been involved for a long time in providing care to their spouse (Brody, Johnsen & Fulcome, 1984). They would be more likely to know who to contact for help (Cross & McMullen); yet less likely to be pre- pared to make housing changes (Newman, 1976). The Caregiving Behavior Scale noted healthy behaviors that benefited not only the caregive’s mettal health but also that of the stroke survivor. For items whee an aveage score of 1.0 designated healthy behavior, the negative p—e fit group aveaged 2.85 and the zeo p-e fit group aveaged 1.75. For the items whee an aveage score of 5.0 indicated healthy behavior, the negative 151 p-e fit group aveaged a 3.48 and the zero p-e fit group aveaged 3.43. Geneally speaking the zeo p-e fit group was exhibiting slightly more healthy caregiving behavior than the negative p-e fit group. For the Help-Seeking Behavior Scale, the variety and frequency of help-seeking was idettified. An aveage score of 5.0 indicated high help- seeking from a variety of sources. The negative p—e fit caregivers had an aveage score of 3.12 versus an aveage score of 2.0 for the zeo p-e fit group. This could be interpreted that the negative p-e fit group explored more assistance from a variety of sources then their counterparts. The negative p-e fit group also had highe caregive strain, which would fit Hooyman’s (1986) findings that caregives experiencing high strain built a broade help-seeking network. flLAL CHARAQIEEITQS OF CAREQIXES Social characteristics of the caregives included social visits from family or friends, and the frequency and desire for visits. Half of the zero p—e fit caregives consideed visits to be ”somewhat important” with the othe half classifying them as ”important" or ”vey important”. The negative p-e fit group showed four of the six caregives regarded visits as ”important”, with the remaining two caregivers considering them ”very important". Reportedly, four of the six negative p-e fit caregives had not received visits since the stroke; vesus one of the four zero p-e fit caregivers. The zero p-e fit group had visits since the stroke and less caregive strain which is consistent with Zarit, Reeve and Bach-Peterson’s (1980) findings of more visits, reducing caregive strain. 152 Table 13 shows the frequency of visits from friends, and whethe the caregive sees the friends as much as desired, as compared by peson-environ- ment fit score. TABLE 13 Desire to See Friends by Peson-Environment Fit Score PERSON-ENVIRONMENT FIT SCORE Negative Score (n=6) Zero Score (n=4) How often friends stop by Rarely 0 0 Couple times month 2 3 Weekly 1 1 3-4 times week 3 0 See friends as much as want to: No- want to see friends less often 1 0 Yes 2 2 No- want to see friends more often 3 2 The frequency of friends stopping by seemed inconsistent with the reported visits following the stroke. The negative p-e fit group indicated they had not been visited since the stroke, yet their friends stopped by more often than the zero p-e fit group. Likewise this group had mixed reactions as to whethe they wanted to see friends more or less often. The majority of the zero p-e fit group seemed to see friends less often then their counterparts. In this group, half of the caregives saw friends as much as they wanted to, with the othe half desiring more visits. Social characteristics also included having someone to talk with or to 153 provide pesonal care needs, and the use of community services. All caregives from both groups had someone to talk with and identified friends or family membes to assist with pesonal needs. Two caregives from the negative p—e fit group and one from the zero p—e fit group used community services for additional caregiving for the stroke survivor. The limited use of community sevices among caregives is consistent with the literature (Krout, 1983). The strong informal network for these families may discourage seeking services that could provide respite for family members (O' Brien & Wagne, 1980). Housing Resources for the Caregive As previously mentioned, all caregivers lived with the stroke survivors. All but one of the caregivers wee homeownes. The one son lived in his mother's home to provide care (negative p—e fit group). Caregivers wee asked about problems with caring for the home, and whethe thee wee any increases in housing expenses since the stroke. Although two caregives in the negative p-e fit group and one in the zero p-e fit group wee having problems caring for their homes, the majority wee not. Specific examples have been cited in the case studies. Similarly these families reported increases in housing expenses since the stroke. All caregivers felt the current living arrangement was working out well. In spite of these feelings, future housing adaptation plans wee being made by three caregives (two from the negative p-e fit group and one from the zero p—e fit group). Housing plans mainly centered around a move to a single story home or moving the stroke survivor to a nursing facility. The interviews 154 clearly linked bladde and bowel incontinence to plans for a move. When asked to describe an ideal housing arrangement for the stroke survivor and caregive, six of the ten caregives consideed their current setting to be ideal. Other descriptions of ideal housing arrangements included seeking a nursing facility for the stroke survivor, making a move to a single story home or condominium; adding a ramp; remaining in close proximity to family; and obtaining more assistance with housekeeping. RESEARCH QUESTION (3): What is the relationship between the A person-environment fit score and the Caregive Strain Index? Table 14 compares the Caregive Strain Index Scores (Robinson, 1983) with the person-environment fit score by family case numbers. Except for the two cases that are marked (‘), the geneal pattern seems to be that households with zero p-e fit scores have caregivers exhibiting lowe caregive stain, and households with negative p-e fit scores have caregives who report highe caregive stain. No clear explanation can be found for the two cases that do not fit this patten. Table 14 Comparison of Caregiver Stain Score and Peson-Environment Fit Score by Case Numbers Family Case Number Caregive Stain P-E Fit Score 5 2 0 7 2 -2" 3 3 0 10 3 0 13 8 0" 18 8 -3 19 10 -2 11 11 -2 17 11 -2 16 12 -4 155 Table 15 summarizes the data for the specific caregive stain items by person-environment fit score. In geneal, all caregivers from both groups were stained by sleep disturbance. For the negative p-e fit group, factors that seemed to contibute to high caregive stain were as follows: changes in the stoke survivor wee upsetting; feeling overwhelmed; making emotional adjustments; some of the stoke survivor’ s behaviors wee upsetting; making changes in personal plans; and feeling confined due to resticted free time. Othe stessors for some caregivers included family adjustments, the incon- venience of helping, physical stain and work adjustnents. Table 15 Caregive Stain Index by Person-Environment Fit Score PERSON-ENVIRONMENT FIT SCORE Negative Score (n=6) Zero Score (n=4) STRAIN Yes No Yes No Sleep Disturbance 6 0 4 0 Inconvenient to Help 4 2 0 4 Physical Stain 3 3 1 3 Free Time Resticted 5 1 1 3 Family Adjustments 4 2 0 4 Change in Personal Plans 5 1 1 3 Other Demands on Time 2 4 0 4 Emotional Adjustnents 5 1 2 2 Stoke Survivor's Behaviors are Upsetting 5 1 2 2 Upsetting to Find Changes in the Stoke Survivor 6 O 2 2 Work Adjustments Made 3 3 0 4 Financial Stain 1 5 0 4 Feeling Ovewhelmed 5 1 2 2 The zero p—e fit group reported four stessors that affected half of the group. These included emotional adjustments, feeling overwhelmed, and 156 finding the stoke survivor' s behaviors and physical changes upsetting. Separate individuals noted problems with the physical stain of caregiving, restricted free time and changes in personal plans. Experiencing caregive stain fits with Carp (1977), Hiatt (1982) and Lawton’s (1983) concern that the physical environment can negatively impact on those who function therein. Frustations with the environment can lead to frustations with othe facets of one’s life. The specific nature of the relation- ship between caregive stain and the physical environment needs to be more fully explored with additional probing questions for this sample. In summary, the individual characteristics of the stoke survivors, their environments and caregivers did not deviate from tends predicted in the literature. The following chapter compiles an oveall description of the negative p-e fit group as compared with the zeo p-e fit group for all variables, noting pattens for the composite group. Implications of the findings and the need for future research directives are explored. CHAPTER SD( CONCLUSIONS AND RESEARCH IMPLICATIONS Chapter Six provides an analysis of the models used in this study. It also summarizes the stoke survivor and caregive characteristics for the negative p—e fit group and the zeo p—e fit group. Trends and conclusions are high- lighted, and implications from the findings of this study are explored. Suggest- ions have been provided for changes in public policy and future research erdeavors. ANAL OF MODELS This study reviewed qualitative data for ten families who were dealing with the day to day stuggle of recovey from a stoke. Each family was assessed from an ecological pespective. The relationships between the stoke survivor (his/ he physical limitations and abilities to perform Activities of Daily Living), the physical environment (aids and devices plus the housing characteristies), and the human behavioral environment (caregive charact- eristics) wee observed. Interactions with the community resources and the natural environmert wee noted (See Figure 1). The ecological model was used for analysis of the relationship of variables for this study. It was developed from the writings by Bubolz, Eiche and 157 158 Sontag (1979) and Morrison (1974), plus Bubolz and Whiren’s (1984) study of families of the handicapped. The interdependency of the stoke survivor and the caregive wee linked to the physical environment. The linkage can result in an appropriate persomenvironment fit or an inappropriate fit. Poor fit in turn impacts on the caregive, the stoke survivor, and the physical environ- ment (eg. scarred walls as a wheelchair maneuvers cornes). The community serves as a surrounding environment and a potential resource to support the family ecosystem. Professionals can provide environmental consultation to improve person-environment fit and assist with facilitation of the changes. Natural Environment Community Environment: Services Human Behavioral Environment: Caregiver STROKE SURVIVOR: Physical Health Activities of Daily Living Human Constructed Environment: Aids/Devices Housing Figure 1: Stoke Survivor’s Ecological Model 159 The dynamics of the interconnected ecosystem and person-environment fit continue to evolve. They shift in and out of fit ove time. The shifting occurs as a result of changes to any component of the system. For example, a stoke survivor, who predominantly had been confined to a bed, improves to the point of using a wheelchair. The wheelchair cannot easily pass through the house, and must be lifted when entering or exiting the house. An environment that worked well for an immobile individual may present a problem fit as mobility increases. Figure 2 illustates the component factors that specifically comprised peson-environment fit for case study analysis. 160 HUMAN CONSTRUCTED ENVIRONMENT I Aids/Devices Physical BEHAVIORAL 0°"d't'0" Health ENVIRONMENT Caregiver Physical Activities of Daily Living ' Person-Environment Fit ; Figure 2: Factors Comprising Peson-Environment Fit The format of the peson-environment fit relationship was derived from DeIong and Branch (1982). It pulled togethe key elements for p-e fit, while tying in the additional component of caregive characteristics. This relation- ship was not addressed in the literature. For this study, the format of person-environment fit worked effectively with case study analysis. The secondary data, however, did not always fit the format. It is recommended that future projects prepare tailored questions to directly assess all factors in the format. For this study, additional questions needed to be asked concerning pre-stoke ambulation and characteristics of the 161 physical environment. Assessment of these two factors had to be derived from a variety of open-ended questions or interviewe notes, more so than direct questioning. O ION FROM L O I'LLIONO THE IOP-EFIT ROE:- The previous chapte summarized specific data for each of the variables, noting relationships to literature findings. For each variable, the findings from this study were consistent with the literature. This section compares oveall characteistics of the person-environment fit groups for each of the research questions. Some interesting tends emerged from the data collected. RESEARCH QUESTION (I): What is the relationship between person- environment fit and selected demographic and physical characteristics of the stoke survivor? Of the many variables explored for this research question, a few charact- eristics about the stoke survivor provided some distinctions between person- environment fit groups. Table 16 highlights stoke survivor characteristics by peson-environment fit. 162 Table 16 Stoke Survivor Characteristics by Person-Environment Fit Score NEGATTVE P-E FIT SCORE (n=6) ZERO P-E FIT SCORE (n=4) Olde Younge Males and Females All males Half wee married All married More pre-stoke ailments Fewe pre-stoke ailments More post stoke ailments Fewe post stoke ailments More bladde and bowel problems Half with bladder problems More problems with ADLs Fewe problems with ADLs All used wheelchairs , One wheelchair user More needed help with aids One needed help with aids Broad range of income Less income Multi-story homes All single story homes More exterior stairs Some exterior steps Made more housing changes Fewe housing changes Had more future housing No future housing adaptation plans adaptation plans Most satisfied with housing All satisfied with housing The negative p-e fit group was olde than the zeo p-e fit group and had more disabilities pre and post stoke. Increased disability and the use of an ambulatory aid (wheelchair) that could not- move into or throughout the home created a problem p-e fit. This group did howeve make more housing changes than their counterparts. The changes did not greatly affect ambulatory p-e fit. Thee wee problems with incontinence for most of the stoke survivors in the negative p-e fit group. This problem did not directly affect the p-e fit scale for this study, but poor ambulation cetainly compounds an incontinence problem. Having touble reaching the bathroom can add to an increase in household cleaning. As was discussed by the caregive, the problem may have 163 raised the concern for moving the stoke survivor to a nursing home. The literature confirms that incontinence is a contributing factor in institutional- ization (Office of Technology Assessment, 1985). The negative p-e fit stoke survivors had a broad range of income. Those with highe income had more resources with which to plan future housing changes or moves. Families with highe incomes indicated the following future housing changes: adding a ramp; moving to a ranch style home; or placement of the stoke survivor in a nursing facility. In spite of the potential changes, most of the group indicated satisfaction with the housing situation. The relationship between housing satisfaction and person-environment fit of olde individuals living in their own homes has not been explored extensive- ly in the literature. Housing satisfaction deals with a broade psychological involvement and long tern attachment to the home (Golant, 1982; Weave & Ford, 1988). Pech (1983) observed that disabled individuals also were satisfied with their homes, even if these environments wee not in good shape. This seems to be the situation for the negative p—e fit group. As Newman (1976) noted, considering any change is a painful process for olde individuals stongly attached to their homes. If physically compensating for a poor p-e fit is less painful than the thought of making an environmental change, then compensation will continue until this pain outweighs that of a move (N adle, 1983). Denial and continual decline can last a long time before forced change can no longe be ignored. The zero p-e fit group had younge stoke survivors with fewe pre and post stoke disabilities (except one stoke survivor), but all had problems with 164 ambulation. Their homes wee more conducive to ambulation with the use of aids, since the only interior stairs led to basements. Exterior stairs wee a problem, but they wee taversed with assistance from the caregive. The one stoke survivor who used a wheelchair had an exterior ramp to aid access in and out of the home. Once out of the home, howeve, the caregive in that family had problens tansferring the stoke survivor into the car by herself. The caregive was not stong enough to lift the wheelchair into the tunk of the car. This prevented the caregiver and stoke survivor from going out on their own without assistance from othe family members. As the environment supports the functions, so too can independence be supported with less demand on those individuals providing care. RESEARCH QUESTION (2): What is the relationship between person- environment fit and selected caregive characteristics for these families? Table 17 compiles the general tends that emeged among the many caregive variables when sorted by p-e fit scores. The findings imply that pesons in the zero p—e fit group may have been more prepared to take on the after stoke caregiving role than their counterparts. All wee olde, female spouses serving as full time homemakes who already wee providing care to their husbands. Physical health for some may have been a stain, but emotional health for the zero p-e fit group was bette than the othe group. Emotional health had not changed since the stoke. They saw friends less often and exhibited less Help-Seeking Behavior, potentially because they peceived less help was needed. Their Caregiving Behavior was healthie, which meant that they would let othes help if needed, and they took care of 165 themselves as well as the stoke survivor. Table 17 Caregive Characteristies by Person-Environment Fit Score NEGATIVE P-E FIT SCORE (n=6) ZERO P-E FIT SCORE (n=4) Mostly female; 2 males All females Spouses 8: adult children All spouses Younge aveage age Olde aveage age Highe income Lowe income Some had health problems Some had health problems affecting caregiving. affecting caregiving. Most couldn’t get out to One was concened about execise. execise. Most had changes in eating Half ate out less often & out and time with meal less with friends. preparation. Half had good emotional All had good emotional health. health. Two felt emotional health Emotional health had not had worsened. changed since the stoke Most worried often. Most worried often. Less prepared oveall More prepared for for caregiving. caregiving. Not as healthy Caregiving Slightly healthie Behavior. Caregiving Behavior. Most hadn’t received visits Had visits since stoke. from friends since stoke. Saw friends more often. Saw friends less often. More Help-Seeking Behavior. Less Help-Seeking Behavior. All felt housing met needs. All felt housing met needs. Not prepared to make housing Not or somewhat prepared changes and did not know to make housing changes; whom to contact for changes. half did not know whom to contact to make changes. Two had problens caring One had problems caring for home. for home. The negative p-e fit caregives wee younge then their counterparts, half being adult children. This group seemed less prepared for their caregiving 166 role. The adult children may have been experiencing some of the pressure of the sandwich geneation. They wee caring for themselves while being employed full time, plus caring for their parents and the younger geneation (Brody, 1981). Since the stoke survivors of this group had more ailments than their counterparts, the caregivers may have had more potential for caregiving demands. In both groups the caregivers felt that the housing needs of the stoke survivor wee being met. Those in the negative p—e fit group wee reportedly not as prepared to make housing changes nor did they know whom to contact for housing changes, as compared to some of the zero p-e fit caregives. They, howeve, had made more environmental changes and had more income to do so, yet all the peson-environment fit needs wee not being met. It must be remembeed that these families wee interviewed only 30 days to six months post hospitalization. This was an unsettled period of adjustment to the disability and a time of hope for the stoke survivor's recovery from initial physical limitations. Creating peson-environment fit may not have been a key concern for these families, consideing the othe demands in their lives. Additionally, lack of recognition that a poor person-environment fit existed may have been part of the problem. Psychologically the negative p-e fit group may not have been ready to recognize or explore peson-environment fit issues or solutions. Follow- up interviews with these caregivers might lend insight into long term responses to environmental needs. 167 RESEARCH QUESTION (3): What is the relationship between the person-environmert fit score and the Caregive Stain Index? As noted in the previous chapter, the geneal relationship between these two variables showed highe caregive stain associated with negative p—e fit, and lowe caregive stain associated with zero p-e fit caregivers. If the stoke survivor was frustated with accomplishing daily tasks in an uncooperative environment, this could geneate frustations for the caregiver both physically and psychologically (Carp, 1977). O Caregivers frequently initiate and implement environmental changes. If these individuals are unde a great deal of stain, then researching solutions for changes would be an additional burden. For some it would be easie to continue to aid the stoke survivor with such tasks as walking, climbing stairs, and making tansfers than to find alternative solutions. The duration of providing continual assistance in light of personal physical limitations would cetainly compound the caregive stain. Springe and Brubake (1984) addressed this concen particularly for olde caregives. Howeve, younge caregives also could injure themselves from lifting or become physically drained as they care for two households. The delegation of caregiving roles, including physical care, emotional support, coordinating in-home services, and researching environmental changes, is a must for the preservation of the caregiver’ 5 health (Horejsi, 1982). Keeping the caregive healthy prevents family breakdown (Gray, 1984), and tuly assists the patient or stoke survivor oveall (N eubache,1987). I68 5er QY IMPLICATIONS Since the findings for each of the individual variables wee consistent with those found in the literature, this small sample could be considered represent- ative of the stoke survivor population at large. Howeve, genealizations about study implications need to be made with caution when the sample size is ten families. From this study one could infe that thee is a cyclical relationship between peson-environment fit and caregive stain. A poor fit leads to more work on the part of both the caregive and stoke survivor. This leads to psychological stain as a result of both caregive and stoke survivor frustation. Psycho- logical stain also could lead to physical stain for both parties. Caregive stain could worsen the already poor fit, and the cycle repeats itself. Conside the example of the female stoke survivor, who suffered from incontinence but refused to use sanitary pads or a portable commode. She continually became upset with herself since she could not quickly reach the bathroom using he walke through a cluttered home environment. This daily, if not hourly, problem led to refusal to consume liquids and subsequert dehydration. It also discouraged any outings away from home. The caregive was frustated by he mother's refusal to use the aids provided; by the continual laundry problem posed by the incontinence; and by the household cleaning of flooring, carpeting and furniture. Increases in household work load led to physical stain for the caregive. Psychological stain for the caregive was a result of internalizing he mother’ s humiliation, he own frustation, and worrying about the physical harm dehydration could cause. 169 Frustations led to a lack of household maintenance and a resultant increase in clutter. Frustation also geneated caregive ange toward the stoke survivor. Appropriate interventions could break the cycle. Sevice provides might have discussed the incontinence problem with the stoke survivor. Helping the stoke survivor see the entire picture might have encouraged he to use the sanitary pads. The caregive might have had the environmental issues highlighted by a sevice provide. These issues might have included clutter removal for ease of maneuvering a walke through the home; providing privacy for the stoke survivor to use the portable commode; and changing surface materials to those that are very easy to clean and do not support bacterial growth. An improvement in the environment may reduce caregive stain. A good peson-environmelt fit, in the first place, could support and encourage both the caregive and stoke survivor, thus reducing caregive stain from this part of their lives. It is important to realize that fit changes ove time. This includes ove the course of the day, as both the stoke survivor and caregive become fatigued. A good fit in the morning may not be a good fit in the evening. It is amazing how readily our society provides environmental support for children (eg. smalle chairs, coat hooks lowe on the wall, or stools to increase height when using a sink)., yet does not readily recognize the need for that support at the othe end of the life cycle. As one ages, it is sometimes personally and societally peceived that humans are capable of accommodating themselves to any environment without assistance; similar to a test of 170 adulthood and independence. Providing a good p-e fit for the child encourages independence, self assurance and self esteem. The same is tue for pesons with physical limitations, and at the same time the independence and self assurance of the caregive is enhanced. The use of devices frequently is rejected by many, who fear dependence on the device. Pesons wearing eye glasses are dependent on this device and would certainly be handicapped without it. Assistive aids need to be consider- ed in the same light. Cultural attitudes tend to reject the use of aids or devices, and discourage barrier-free residential design. If a shift in attitudes can be encouraged, all would benefit. Study findings highlighted caregive characteristics that could enhance peson-environment fit. Common characteristics include the following: good physical health, good emotional health, feeling prepared for the caregiving role, and exhibiting healthy caregiving behaviors that promote attention to one’ s own health as well as that of the stoke survivor. Marital status and no employment outside the home also related to a bette peson-environment fit. Educational background was not a factor. ‘ Implications can be found for disseminating peson-environment fit information based on othe caregive characteristics. Female caregives tend not to pursue environmental changes as much as their male counterparts (Newman, 1976); yet they seek othe kinds of help more so than males (N adle, 1983). Since the literature confirms that thee are more female caregivers than males, stategies for developing readable and easily undestood materials that explain environmertal changes may encourage action on their part. Bringing 171 the information to the caregive through existing helping channels (eg. professionals already coming into the home to provide other medical related sevices) may alleviate the frustation of not knowing what changes to make or whom to contact for making the changes. Intevention can occur at the onset of stoke or three months afte the stoke when initial recovery from disabilities has occurred. Environmental intervention would function like othe medical inteventions. IMPLICATIONS FOR SERVICE PROVIDERS Initially following a stoke, the family has many issues with which to cope. Many of these issues are addressed by helping professionals (eg. visiting nurses, occupational theapists, speech theapists, social workes, family theapists). One area that is not addressed by the helping professionals is the physical environment. On occasion, advice is given by persons not tained to make environmental recommendations. A recommendation from this study would be to tain the community professionals who provide in-home services, so accurate advice can be given. Caregivers may not perceive the existence of a problem peson-environment fit unless it is brought to their attention. Once a problem is recognized, altenatives for action can be explored. Sevice provides need to recognize the assistance design professionals can make as a team mernbe in patient rehabilitation. They can serve as a resource for providing suggestions to improve person-environment fit. Design A professionals may not be readily consulted since the avenue of design for disability is a relatively recent tend in design education. Lowe income families would find design consultation cost prohibitive. Most consumes and 172 service providers are eithe not aware of these competencies in design professionals or find the sevices too expensive; so they handle environmental issues themselves. Again, taining sevice provides to prepare environmental assessments can benefit low income families as well as networking housing information to female caregives who seem less comfortable with seeking this information. IMPLICATIONS FOR PUBLIC POLICY The aging population will continue to grow, and the disabled population will do likewise. The public policy implications from this study revolve around policies for univesal design for private housing and funding environ- mental assessment and changes. Currelt public and private funding policies for the acquisition of ”not medically necessary" devices that support independ- erce also have important implications. Medical insurance does not cove the expelses associated with environ- mertal assessments. Because of this, professionals providing in-home services could not bill insurance companies for the time it might take to provide clients with environmental guidance. These sevices need to become recognized as a part of a viable team approach to rehabilitation teatrnent. If occupational theapists can bill their sevices to insurance companies, so should the design professional. Funding policies for insurance coveage for supportive aids and devices should be reconsideed. Coveage should include those devices that encourage self assistance as well as those that are medically necessary (American Occupational Theapy Medical Handbook, 1984). Encouraging 173 stoke survivor independence is medically necessary in the long run for support and medical wellbeing of the caregive. More public and private funding sources need to be accessible to varying income groups for supporting the acquisition of aids and devices and making environmental changes. Lowe income families have a greater range of options than do middle income households. Many families are unaware of devices that can be obtained from organizations like the United Way. Additionally, many families are unaware of the tax laws that allow the deduction from personal income taxes of ervironmental changes or expenses for aids as medical expenses. The environmental changes or items need to be recommended by a physician (eg. a doctor can write a prescription for a ramp) before they can be consideed tax deductible. Unfortunately, environmental changes are not a part of the taining curriculum for doctors, and unless the patient or caregiver asks for such a prescription, the doctor may not think to write one. Initial outlay of capital is required for writing off the expense, and this may be cost prohibitive if othe medical related needs have to be paid out of pocket. The middle income households with limited insurance could be hardest hit. Public policy also needs to address the concern for olde and disabled individuals remaining in housing that is dilapidated or provides a poor peson-environmert fit. Individuals tend to adapt to the conditions of their environmert instead of changing the ervironment to meet the human needs. The fedeal govenment needs to contol fedeal spending on all programs through reallocation of funds versus new funding, during this time of high 174 fedeal deficit. Howeve, between 1980 and 1988 the budget for the Department of Housing and Urban Development has been reduced from $33 billion to $7 billion. During this time, constuction for low-income housing and housing for the eldely has dropped dramatically; fedeal rent subsidies have been reduced; and the numbe of homeless has increased temendously. Until the deficit is reduced, it is unlikely that tailored housing for elderly individuals and handicapper needs will be constucted with fedeal dollars. One housing option that would not require additional fedeal dollars would be to change the constuction code to require all new housing to be spatially barrie-free (univesal design). This would allowing eveyone to grow old or become disabled in their existing home while expanding the housing stock for these populations. Funding, howeve, is needed to enhance community support for services that enable pesons to remain in their homes as long as possible. Pesons are emotionally seeking the security of their home setting as a stable component to their lives. Many do not want othes to know that they can no longe handle the home by themselves, and fear othe future housing options. Whethe to remain or leave becomes a stessful decision. Additional fedeal funds for home repair and chore sevices would reduce much of the physical stess for the olde peson caring for the home, as well as the psychological stess from worrying about a move. Providing financial incentives to family caregives may support their involvement, theefore deterring the premature placement of olde individuals into nursing homes. The need for these inceltives will grow as the baby boom geneation ages and as the demand for services drastically 17S increases. IMPLI TION R EC LOGICAL FAMILY RESEARCH An ecological approach to family research addresses the dynamies and the complexity of the family system. It is a system that evolves and changes over time and modifies itself to cope with varying events or crises that may occur. The synegy of the system denotes the relationship of the variables or factors comprising the system, and observes that one factor impacts on all othe factors to varying degrees. The person- environment fit relationship is as dynamic as the ecological system. Fit is fragile and changes ove time. Person- environ- ment fit, for example, may work in the morning when the stoke survivor has more enegy; yet may not function effectively as fatigue increases. Many family studies address individual issues rathe than family issues. For example, studies focus on the olde individual or on the caregive, but do not readily look at the relationship between the two or the impact on the oveall family system. It is critical to study this relationship from the dynamics of the entire system. Doing so requires collaborative efforts from many disciplines. It can be a lengthy and costly process because ecological inquiry requires a qualitative approach. In spite of the difficulties involved with conducting ecological studies, the breadth of data concerning the entire family system collected through this approach is well worth the time, energy and expense. A holistic pespective can more effectively be obtained from this methodology versus survey research. 176 W Furthe research with the sample of ten stoke survivors and their families could shed light on longitudinal implications for peson-environment fit. Exploring life a year or two afte the stoke would identify pemanent dis- abilities and housing adaptations families have or have not created to deal with the disabilities. Addih'onal questioning could clarify some of the inconsist- encies found in the data between closed and open-ended responses. An ethnographic approach could pursue some of the inconsistencies. Assessing the impact of long term caregive stain in relation to both person-environment fit and caregive coping stategies could enrich the literature in the study of- both caregiving and housing. Studies should pursue the relationship between housing satisfaction in private homes of the eldely or handicappes and peson-environment fit. Many olde homeowners have stong emotional and financial attachment to a home environment that no longe fits their physical needs and causes frus- tation at every turn. The emotional commitment and satisfaction can not be denied. If homes wee univesally designed to accommodate growing old or becoming disabled, then making changes or moving would not be an issue. Data need to be collected concening attitudes about universal design among younge homeownes. This hopefully would document favoritism for this housing option, providing the statistical push to encourage buildes to supply this product. With time, younge cohorts could grow old or become disabled in their univesally designed homes. The home, with its time, money and emotional attachment, would not have to be modified or abandoned when 177 disability affected a family mernbe. Univesal design would not diminish the need for specialized housing options (eg. nursing facilities or age congregate housing), but with the rapidly increasing eldely population, demands for all types of housing will be critical. Research to validate the peson-environment fit scale should be explored with a quantitative methodology using a large sample of eldely stoke survivors. Focus on fewe variables with a large sample would refine the scale and more readily lend genealizability of findings to the population of olde stoke patierts. Testing the peson-environmelt fit scale with a diffeent population (eg. Alzheime patients) would lend credence to the tansferability of the research tool. Furthe research should explore the extent to which medical pesonnel suggest physical environmental changes and related information to patients and their families. The present study only scratches the surface for this issue. The need for medical personnel to have additional taining in housing and design issues should be explored, given the consultative role many of them play for stoke survivors and caregives. In-sevice seminars or the inclusion of design content as a part of the core curriculum for visiting nurses, occupa- tional, physical and speech theapists, social workers, and family professionals would enrich their practical knowledge for holistic family solutions. In summary, thee are many research eldeavors awaiting attention. Peson-environment fit has been discussed within the design community and for large scale housing complexes for the eldely population. Research on single family dwellings needs to continue because the majority of the current 178 and future olde cohorts will reside in their own homes. Stoke is one of many disabling conditions of aging. Those coping with othe disabilities can benefit from peson-environment fit research. Consideing the physical environment as a tool for physical and psychological wellbeing will benefit those experi- encing disabilities, their caregivers and service provides. APPENDICES APPENDD