o .. -. a o c o. .. . . .‘o ..~ - . .-. ¢ ., gy. .- o a. ,.. 0-. .- .~. ‘- w‘-‘- o u . . o D - - 0 o - “ww— - n a c n ELDERLY NURSINGHQMEPATIENTSAND'THEIR’ \ :- FAMILIES: PROGRAMMATICANDSOCIALISSUES ‘ Thesis for the Degree of‘M. A ~ ' . MICHIGAN STATEUNIVERSITY, ' - _ ONATHANIIND YORK. r ‘ ' ,_ . _ 1976 . ' ' . j. ABSTRACT ELDERLY NURSING HOME PATIENTS AND THEIR FAMILIES: PROGRAMMATIC AND SOCIAL ISSUES BY Jonathan Lind York A review of the literature revealed that families generally remain involved in the lives of their older relatives and that such phenomena as "dumping" of the elderly into institutions are empirically invalid. Never- theless, further investigation has shown that families are rarely utilized as treatment resources for elderly rela- tives who have been placed in nursing homes, and that families often act as a negative factor in their relative's care. The present research was undertaken in order to examine the factors crucial to productive involvement of families in the lives of nursing home patients. Extensive personal interviews were conducted with the significant relatives of 76 nursing home patients in the Lansing, Michigan area. Through this interview, a comprehensive picture of the family was compiled, covering to the nursing home placement process, pre-placement involvement, Jonathan Lind York visiting practices, available support systems, feelings of guilt concerning institutionalization, expressed program- matic needs, and demographics. In addition, other instru- ments measured the behavioral and physical functioning levels of each patient on several scales. Data analysis focused on descriptive statistics, correlation matrices, and a cluster analysis of variables. Results revealed that families were unaware of and made very little use of alternatives to nursing home placement; however, placement was not seen as a "dumping" reaction, but as a final response to a difficult situation. Further- more, a large proportion of families were willing to take part in any programs to help them communicate better with their relative and to serve as a more positive treatment resource. Visiting is even more problematic for relatives of mentally impaired patients; these families not only enjoy their visiting less but seem to visit more out of guilt feelings than out of desire to see the patient. Programs are needed to train families to visit more pro- ductively; those families who were more active on visits tended to enjoy visits more no matter what the condition of their relative. In addition, support mechanisms for families were found to be inadequate. Only 33% of the families felt support from the physician in dealing with their relative's emotional and psychosocial needs, and those who did draw Jonathan Lind York this type of support tended to both feel less guilty and be less willing to be involved in programs. Physician support did not correlate with either quantity or quality of visiting. Based upon the results and their interpretation, several suggestions were made for program development in both nursing homes and other social service agencies. ELDERLY NURSING HOME PATIENTS AND THEIR FAMILIES: PROGRAMMATIC AND SOCIAL ISSUES BY Jonathan Lind York A THESIS Submitted to Michigan State University in partial fulfillment of the requirements for the degree of MASTER OF ARTS Department of Psychology 1976 To Kathy, who sticks with me, To Jacob, who came in the middle, and To my mother, who was there from the start. ii ACKNOWLEDGMENTS A great debt is owed to Bob Calsyn, my committee chairman and friend, who may have refused to OK my first draft verbatim but never refused to advise, counsel, and support. Also, to Louis Tornatzky and George W. Fair- weather, for serving on my committee and for helping me on my way in Ecological Psychology. All of this was made possible by the Nursing Home Training and Consultation Project at St. Lawrence Hospital Community Mental Health Center; a judicious use of funds provided by Michigan Association for Regional Medical Programs and a great deal of support from Esther Fargus were the catalysts for both the Project and this thesis. Ed Lynn, Chris Soderman, Gordon Steinhauer, Mary Ann Smith, and Amanda Beck protected me from our system, Victoria Landolfi of Provincial House, Inc., gave me kind access to theirs, and the rest is history. Except for a speCial thanks to all of the families who let us into their homes, and to Carole Howland, who did such a marvelous job collecting data and interviewing families. iii Chapter ./ K/ I. II. V TABLE OF CONTENTS INTRODUCTION . . . . . . . The Problem of Resources. . “'Aged Patients and Their Families. dFamilies and Institutionalization ~fFamily Programs in Nursing Homes .JThe Present Research. . . . METHODS O O O O O O O O O l' J Participants . . . . . . Interview Methods. . . . . Patient Assessment Methods. . Leve 1"-BOP o o o o o 0 Cognitive Functioning. . . Lack of Social Interaction . Verbal Hostility . . . . Physical Hostility. . Depression . . . . Psychotic Behavior. . Messiness. . . . . Measurement of Patient Physical Functioning--PCC . . . . Family Interview . . . . . Pre-placement Problems . . Pre-placement Family Involvement Nursing Home Choice Process. Family Visiting Practices Support Systems. . . . Guilt . . . . . . . Programmatic Needs. . . Miscellaneous Variables . Scope of the Analysis . . . iv Measurement of Patient Functioning The Quality of Life in Nursing Homes: Page 12 18 21 24 24 25 26 26 26 27 27 27 27 28 28 28 28 29 29 33 34 35 36 36 37 Chapter III. ,.. in MSULTS . C C C C O O O O O O 0 Descriptive Statistics--Needs Assessment Nursing Home Placement Process Family Visiting Practices. . Support Systems . . . . . Programmatic Needs . . . . Cluster Analysis of Variables . . . . Hypothesis Testing. . . . . . . . Correlational Analysis . . Factors Influencing Choice of Home. . Support Systems--Pre- and Post- Placement . . . . . . . . 'Patient's Problems Before Placement Willingness to Take Part in Programs Visiting Quantity and Quality . . v IV. DISCUSSION 0 O O O O O O O O O O t. Placement and Choice of Home . . . . V Family Involvement. . . . . . . . ..Support Mechanisms. . . . . . . . / Cnilt . C C O O . O O O O O O . /Cluster Analysis . . . . . . . . smary O O O O O O O O O O O APPENDICES APPENDIX A. LETTER OF INTRODUCTION TO FAMILIES . . . B. BEHAVIOR OF OLDER PERSON'S CHECKLIST (BOP) C. PHYSICAL CAPABILITIES CHECKLIST (PCC) . . D. FAMILY INTERVIEW SCHEDULE . . . . . . E. SCORING KEY FOR FAMILY INTERVIEW. . . . F. EMPIRICAL V-ANALYSIS KEY CLUSTER STRUCTURE \I REFERENCES 0 O O O O O O O O O O O O Page 38 38 38 42 43 44 44 52 60 62 64 68 70 72 74 75 77 83 85 90 94 96 97 100 103 117 132 134 10. 11. 12. LIST OF TABLES Variables Assessed on Family Survey Question- naire O O C O O O O O O O O C O Pre-placement Problems . . . . . . . . Percentage of Families Providing Help Before Placement in Areas of Need . . . . . . Family Ratings of Enjoyment of Visits . . . V-Analysis Preset Key Cluster Structure . . Inter-Cluster Correlations-~Preset Key Cluster Analysis . . . . . . . . . Correlation of Behavioral and Physical Functioning of Patients with Family Quality and Quantity of Visits. . . . . Correlation of Support in Understanding Relative's Physical and Emotional Problems with Family Quality and Quantity of Visits. Breakdown of Mean Number of Visits Per Month by Family--Guilt and Impairment Level of Patients . . . . . . . . . Correlation of Patient Behavioral and Physi- cal Functioning with Patient's Importance in Placement Decision. . . . . . . . Intercorrelations of Factors Influencing Choice of Nursing Home . . . . . . . Correlation of Variables Assessing Support in Placement Decision with Variables Assessing Support After Placement. . . . vi Page 30 39 40 42 47 51 53 56 58 61 63 66 Table Page 13. Correlations of Support Variables with Variables Assessing Problems on Visits and Family Difficulty in Coping . . . . . 67 14. Intercorrelations of Pre-Placement Problems. . 69 vii CHAPTER I INTRODUCTION The Qualityof Life in Nursing Homes: ’ The ProBlem of Resources ‘ There are currently over one million older Americans living in almost 23,000 nursing homes in this country. Although this represents only 5% of the total population over 65, a more significant fact is that one- fourth of all persons over age 75 will enter a nursing home sometime in their lives (Lubin, 1975). In addition, with the vast increases of older Americans projected in the last quarter of the twentieth century, the total number needing nursing home care is bound to grow astronomically. In fact, some researchers have projected as high as 25 or 30% of the population, the number older than 65 by the year 2000 (Graber, 1976). If utilization rates remain the same, this will place two or three times as many people in nursing homes as there are today. Even if medical advances and development of strong alternatives to institutionalization can cut utilization in half, there will still be vast numbers in need of nursing home care. This vast number of institutionalized elderly is not a problem in itself, as most of the residents in nursing homes need some sort of professional care in a protective and therapeutic environment. What has become a major problem is the fact that a large proportion of these people are living in nursing homes which are mar- ginally, if at all, geared toward providing for a decent quality of life for their patients. This country origi— nally allowed the proprietary profit-making nursing home industry to grow and to flourish in an atmosphere of dis- regard, unhampered by any but the most rudimentary con- trols. Shocking revelations of health and safety hazards, along with several horrible disasters (Mendelson, 1974), brought the first round of governmental regulation, con- trolling such important aspects as nutrition, fire safety, cleanliness, etc. Unfortunately, the improvement of these areas may serve as a necessary condition for upgrading the quality of life in nursing homes, but it is far from sufficient. Regulations have failed thus far to attack the more global problem of quality of care and quality of life, and in failing have therefore left it up to each nursing home to maintain its own standards. Moreover, the emphasis of governmental bodies on "bricks and mortar" regulations has shifted the focus of both nursing homes and the public from the crucial question of what kind of lives our elderly citizens can lead in nursing homes (Shore, 1975). It has thus been left to a handful of researchers and social scientists to attempt to measure the quality of life in nursing homes (Andrews & Withey, 1974; Goldman, 1973) and to attempt to make improvements (Coons, 1973; Donahue, 1964; Goldman, 1975). Several major steps have been made in improving the general quality of life among the institutionalized elderly; foremost among these are the development of reality orientation techniques (Folsom, 1968); milieu therapy (Gattesman, 1973); remotivation therapy (Pullinger & Sholly, n.d.); resocialization (Kunkel, 1970). In addition, new research is produced regularly on methods of structuring living environments for the elderly in institutions to improve functioning (McClannahan, 1973; Jones, 1975). Nevertheless, it is an unfortunate fact that almost all of the innovative treatment and rehabilitation techniques being used to improve institutional care got their start in and are yet limited to a select handful of high-powered geriatric centers or state hospitals. Facilities such as the Philadelphia Geriatric Center, the Institute of Gerontology at Ann Arbor, the Tuscaloosa Veteran's Administration Hospital all have far greater resources in both staff and physical plant than the proprietary nursing homes which care for over 80% of our nation's elderly (Brody, 1973). Indeed, it is this disparity in resources between the forerunners in geriatric care and the local nursing home which may account for the enormous lag in diffusion of progressive treatment techniques and environmental changes. The minority of gerontologists who have attempted to create programmatic improvements in the "average" pro- prietary nursing home setting have almost universally cited the paucity of resources as the major impediment (Wershaw, 1976). These nursing homes operate at the minimal standards as set and reimbursed by government, and thus make the minimal expenses necessary to meet regulations. For example, while in a nonprofit, high expense geriatric center the activity program may be run by one or more occupational therapists, in a pro- prietary nursing home it could be directed by a nineteen- year-old ex-nurse's aide. Proprietary and small nonprofit nursing homes have traditionally been most inadequately prepared in three major areas: staffing, rehabilitative services, and physical plant. 1. Staffing-~The weaknesses of nursing home staff are those of both quantity and quality. Inadequate number of staff is most often a direct result of the fact that nursing homes operate with between 70% and 80% of their patients paid for by state Medicaid funds (Brody, 1973), and thus staffing levels and amount of reimbursement for staff is a state prerogative. In other words, the state will reimburse the nursing home for staff as long as it maintains the minimal regulated levels; there is no incentive for increasing beyond this. Staff quality is also in great part a result of the fiscal policies-- nursing home wages are the lowest in any health care profession, and, for aides, are rarely above minimum wage levels. Thus, for nonprofessional staff (aides, orderlies, housekeepers), wages for a very difficult and demanding job are no higher than those for much easier jobs on the outside; most of these staff members are forced by economic necessity to move to any higher paying job available, which contributes to the enormous turnover rate in these positions--as high as 90% per year (Schwartz, 1974). For professional nurses, lower wages contribute to high turnover and difficulty in securing top quality staff, but added to this is the fact that nursing homes are considered the lowest-status jobs in health care. Because of the dual stigmata attached to "chronic care" and working with the elderly, it is extremely difficult to lure top quality nurses into the field. Finally, weaknesses in staff quality are in a large part the result of inadequate preparation, training, and super- vision. York, Calsyn, and Fergus (1975) found that only 15% of the nursing home staff in the Lansing area reported any formal training in working with the elderly. Also, supervision by physicians and gerontological nurses was nonexistent. 2. Rehabilitative services, such as occupational and physical therapy, speech and hearing therapy, and mental health diagnosis, consultation and therapy are also lacking in nursing homes, largely because of the paucity of funds to support them. Nursing care is emphasized as_primary, although Sottesman and Bourestom (1974) found that only 2.1% of residents' time was spent in medical or nursing activities and 55% doing absolutely nothing. Thus, even though nursing homes are modeled after general hospital settings in treating the older person as a "patient" to whom things must be "done," there are few resources available to carry out these treatment tasks and to even begin to fulfill this role (Brody, 1973). 3. Physical plant resources of nursing homes are also far from adequate. Built on a strict cost per square footage formula, most nursing homes have a minimum of space for any but the most traditional uses: dining, sleeping, personal hygiene, and usually one lounge or activity area (Butler & Lewis, 1973). This has been perceived by Butler and Lewis (1973) as a special problem for those nursing home patients who have been released from state mental hospitals, which have relatively a wealth of resources. Aged Patients and Their Families At the same time that researchers and social planners lament this paucity of resources, the most potentially powerful resource available to the patient lies fallow or, worse, works against his well-being. This resource is the patient's family. Before examining some of the potentials of the family in the rehabilitation of the aged patient, it is necessary to dispute several of the myths which seem to lend hopelessness to involving family members with nursing home patients. The first of these can be termed the myth of family uninvolvement, or as it is called by Spark and Brody (1970), "the myth of separation of the aged." Shanas (1963) has attacked this "alienation theory," which holds that old people who live along or apart from their children are neglected by their children. She .cites evidence that ties between older people and their families continue (Shanas, 1960), and that families behave responsibly in relating to their older members' needs (Shanas, 1968). In addition, she has found that families regularly perform household tasks for their older relatives and often house their relatives with them in times of crisis (Shanas, 1968). Townsend (1963) studied family structure and its effects on the likeli- hood of admission to a Home for the Aged (not nursing home) in Britain, and found that over 45% of the older persons samples had moved in with family until circum- stances forced their institutionalization. In addition, these circumstances were found to be of a real and severe nature, such as illness of the child, loss of home forcing moves to smaller accommodations, etc. The World Health Organization has addressed this issue of separation and alienation thus: Wherever careful studies have been carried out in the industrialized countries, the lasting devotion of children for their parents has been amply demonstrated. The great majority of old people are in regular contact with their children, relatives, or friends. All the same, industrial and urban development increases social and geo- graphical mobility, and a small portion of the aged are, as a result, left with few human con- tacts, particularly in large cities. . . . There is also a marginal group, a still larger number of aged people whose survival in the community is precarious and bought at the cost of hardship to relatives or friends. . . . A number of investigators have shown that the three-generation family is very much alive even in the heart of great cities, and that the human relationships which it fosters are preferred by a high proportion of young peOple no less than old ones. (WHO, 1959, pp. 6, 7) The conclusion which can be drawn from much of the evidence is that most older persons continue to have con- tact with their children and other relatives throughout their aging years. Although much has been made of the isolated nuclear family as the prevalent family structure of the last half of the twentieth century, this concept is giving way among empirical evidence to a broader view of the nuclear family operating within a network of kin relationships (Sussman & Burchinal, 1962). Another prevalent myth regarding older persons and their families relates closely to the above myth of segregation: this is the view that older people in institutions are "dumped" there by their families. Camp (1965) states that "the dumping syndrome . . . is observed constantly by the admitting officer of every type of facility to which admission of aged persons is sought: the description of the patient . . . has a miraculous way of adapting itself to coincide with the admission criteria of the receiving facility." However, Spark and Brody (1970) dispute this popular assumption: "The stereotypes of families 'dumping' their aged is a myth. . . . When families place their older members, they are often elderly and ill themselves, have exhausted all other alternatives and have endured enormous social, psycho- logical and economic stress in the process." Data concerning family response to illness tends to further destroy the "dumping" myth. Shanas (1960), in a study of 2,507 older persons, concluded that "as parental needs in the health area become greater, as nursing care or special diets are needed, or as household chores become burdensome for the older person, the majority of children assume these responsibilities." In this study, while 76% of the older people with children and 86% of the children felt that the best place for an older person to live was in his own home, this contrasted 10 with the finding that 44% of the “very sick" old were taken into their childrens' homes. Furthermore, over 35% of the "not sick" old were living with one or more of their children (Shanas, 1960). Thus, it seems that families are more likely to adapt their lifestyles to accommodate a sick or needy older relative rather than automatically place that person into an institution; consequently, placement often occurs only after other alternatives have been tried and exhausted. Further evidence refuting the "dumping theory" is provided by a study by Miller and Harris (1965) of 90 patients and families. They found that six months prior to placement, 42% of the patients lived in a family constellation with either children or relatives, whereas immediately prior to placement 54% lived in a similar family structure. They conclude: "This exemplifies the family's attempt to bring the deteriorating elderly person within the family once again as his medical, psy- chiatric, and social disability mounts. Such a phase of shifting family relationships is common during the period of crisis for the patient and family prior to placement" (p. 849). Frequent observation of the increased dependency of older people on their families has led to another misconception, that of role reversals creating a "second childhood." This is often conceptualized as the reversal 11 of the child's early dependence on the parents, now mani- festing as the parent's dependence on the child. While this may be true in a physical sense, most family theorists (Spark & Brody, 1970; Blenkner, 1965; Suss- man, 1965) have felt that it is not the rule in a psy- chological sense. Rather than seeing the son or daughter as taking on the "parental" role with the older parent, Blenkner (1965) proposes a further stage of development for the adult child which fits this perceived role rever- sal. This stage, which she calls "filial maturity," represents the normative transition from the Freudian stage of genital maturity to old age. She states, " . . . while it is true that the filial crisis marks Childhood's end, the son or daughter does not thereby take on a parental role to his parent. He takes on a filial role, which involves being depended on and therefore being dependable insofar as his parent is concerned" (Blenkner, 1965). Thus, the normal conception of role reversal, which implies weakness on the part of the older parent and a sort of turning of the tables on the part of the child, must give way to the concept of filial maturity, which implies acceptance of responsibility and under- standing of both his and his parent's needs by the child (Spark & Brody, 1970). Indeed, in reviewing the literature on each of the above myths, one becomes aware of the fact that it 12 is observation of the pathological or abnormal families which has created the myth in the first place. One possible explanation for this may be that it is these troubled families which receive a great deal of attention from the authorities, both in government and in social science research. Contrary to the prevalent view that the family structure and harmony may easily break down with the aging problems of parents, Spark and Brody (1970) state:' The family behavior . . . is part of the natural continuity of past relationships from which it flows, not a sudden idiosyncratic departure from previous relationship patterns. . . . The prOSpect of institutional placement may constitute a crucible in which family patterns are revealed in full strength. The behavior of families seen represents the entire spectrum from "health" to pathology. When severe relationship problems have historical roots in the younger family, pathology may be evidenced by the manner in which the family deals with the prospect of placement. As will be seen later, there is a distinct difference between the pathology arising thus and the normative crises around institutionalization of an older family member, and therefore distinctly different treatment methodologies and goals are indicated. Families and Institutionalization Refutation of the above myths as they relate to the general "nonpathological" population can establish that older people do indeed have their families as available resources. A further review of the literature 13 and current research efforts reveal that this resource is (1) strained and often exhausted by the crisis of institutionalization and (2) very rarely tapped in a productive manner at the time of placement. In a large-scale study of 514 patients being placed in nursing homes from Veteran's Administration hospitals, Linn and Gurel (1972) attempted to study the families' attitudes toward placement. Families who were more opposed to nursing home placement and judged as having a more negative attitude toward this type of care tended to be those who had less close ties to their rela- tive while he was hospitalized. The authors hypothesize that this type of family "has not only adjusted to the patient's absence, but, more importantly, having increas- ingly given over to the hospital the responsibility for the patient's welfare, it is now opposed to an action which would return that responsibility to the family" (p. 222). This hypothesis is suspect in its final state- ment, as there is little reason to believe that nursing home care puts any more demands on family responsibility than hospital care. The finding is significant, however, in another light: assuming that eliminating opposition to placement may create maximized family participation and cooperation, it may be possible to lessen this Oppo- sition by greater involvement of the family at the earlier hospital level of care. l4 Linn and Surel (1972) also found in the same study that families of patients with greater psychiatric impairment were more opposed to nursing home placement; the authors attribute this to the families' perception that nursing homes cannot provide adequate care. Inter- estingly enough, there were no significant differences in opposition to placement by different types of key relatives, i.e. wife, child, sibling, and no differences based on age or physical diagnosis of the patient. The authors finally conclude that there are no simple pre- dictors of Opposition, but that there is a definite need for early intervention to forestall as many of the nega- tive effects of this opposition as possible. In a separate study of the factors influencing change in attitudes toward the home after placement, Linn and Surel (1969) studied the attitudes of 80 wives of nursing home patients. The major factors influencing both positive and negative attitude changes were the families' perceived judgments of the characteristics of the homes; the highest correlation was with quality of meals, and then with quality of staff. They conclude that meal quality can be symbolic for the overall impression of the home, but more importantly, that families' judgments of nursing home care are based on superficial factors. The major significance of this finding relates to the relatively unsophisticated method 15 by which people choose nursing homes. This may be a result of the fact that most families at the time of nursing home placement are in a crisis situation, are at the end of their rope after trying other failed alternatives, and are seeking to find any means to rationalize their basically uneducated choice of home. Further research has concentrated on the ability and willingness of the family to become involved in treatment plans for their older relative. Baer, Morin, and Gaitz (1970) examined the family resources of 87 elderly psychiatric patients admitted to a screening and diagnostic center. Their major thrust was to estab- lish the parameters of family contributions, both actual and potential, to the future treatment of the elderly person. By comparing ratings of family resources in attitude and capability with number of treatment tasks undertaken by the family, the authors found that "family attitude was substantially more positive in the group of patients who suffered from organic brain syndrome (OBS) associated with aging, compared to groups of patients who had long-term disturbances such as alcoholism or functional psychosis" (p. 348). They noted this more positive attitude especially in the degree of concern that the family member showed for the patient and the depth of that family member's attachment. Also, families of patients with OBS visited significantly more often. 16 This is possibly because the families could perceive OBS as a medical illness, despite its psychological manifes- tations, and thus could avoid the stigmata generally attached to mental illness. The implications of this study are significant for working with nursing home patients and their families. Families tend to remain involved with older patients, as shown above in many studies; however, it is not so certain that families will remain involved with older patients with severe psychiatric difficulties. Baer, Morin, and Gaitz's study has suggested that the expla- nation of psychiatric disorder by medical (physical) causes may be crucial in eliciting or maintaining family interest. Especially in a nursing home, where the' greatest proportion of psychiatric and behavioral dys- function is a result of organic brain syndrome, this finding may be utilized. The immediate implication of this study is the need for family education: if the family understands the causes and effects of OBS, it may thus be more willing to remain patient and involved with the older person. OBS behavior looks, to the lay- man, as bizarre as psychotic behavior, and indeed it is; however, educating the family as to its etiology and prognosis can help them rationalize as inevitable and, thus, "beyond the patient's control." 17 Maintaining family involvement is crucial to the success of almost any treatment program with mental health implications. Zwerling and Mendelsohn (1965) examined the family's role in a day hospitalization treatment program for mental patients. They found that "the mere expression of willingness to participate in a program of family therapy, and the mere appearance of family members for the first two scheduled sessions, without regard to what is done in these sessions, are significantly related to the improvement in the patient at the time of dis- charge . . ." (p. 57). In addition, the authors reported a significantly more accepting family response toward those patients who were in their first episode of mental illness, a finding which closely parallels the more positive atti- tude of families toward OBS patients found by Baer, Morin, and Gaitz (1970) above. Zwerling and Mendolsohn conclude that a mental illness in an individual "is a manifestation of profound disequilibrium in the family unit. The capacity of the family to re-equilibriate from its dis- turbed state . . . seems to us the underlying force; . . . to the extent to which this capacity exists, recovery can be expected" (p. 62). This finding once again can be extended to the nursing home patient and his family: the more quickly that the family is able to come to an equilibrium after the stressful placement of a relative, the more it will be able to assist this relative through 18 the traumatic early separation period. Often the extrusion of the relative from the home is a welcome relief to the family, and the first reaction is to regroup totally excluding the older patient. Somehow the nursing home must facilitate early involvement of the family members in order to avoid this type of situation. Family Programs in Nursing Homes As shown above, the research indicates that fami- lies are available for involvement and that early involve- ment of families can facilitate higher functioning in patients; nevertheless, there have been only limited attempts to either delineate the actual factors related to family involvement or to establish family programs in geriatric facilities. The first major type of family program to have evolved are those which emphasize information-giving and exchange. An example of this is the staff-resident pro- gram at Drexel Home in Chicago (Shore, 1964); this pro- gram emphasizes the financial aspects of nursing home care, the overall treatment goals and approaches of the home, the religious programming, and the rules and regu- lations of the home. The primary benefit of this type of program is that it promotes cooperation between the family and the nursing home along the above parameters. Shore has recognized, however, that it is not so simple for a family program to remain purely informational. 19 Because relatives are being asked to share in the pro- cesses of the home, there is most often a need for individualized attention. Questions arise about spe— cific patient behaviors and physical or mental health problems, and as Shore has found, it is crucial to recognize and answer these concerns. In response to this need, Lazarus and Schmidt (1971) have developed a more individualized program of family interviewing. Rather than formalizing contacts with the family only in a crisis situation, staff members were trained to conduct regular short sessions with family members focused around the family's needs and concerns. The authors found that ordinary nursing home line staff (primarily R.N.'s and nurses' aides) could establish good rapport with the families and, moreover, could initiate a productive exchange of treatment goals and methods. Often, however, the individualized form of infor- mation-sharing and education program can reveal deep- seated family problems in need of further intervention. In this case, the treatment of choice would be some sort of family therapy, either with or without the older relative involved (Brody & Spark, 1966). Unfortunately, as Howells (1975) notes, it is often difficult to get family therapists to work with family groups around crises in the latter part of life. This may in part be 20 due to the general therapeutic nihilism surrounding the elderly (Butler & Lewis, 1973) or to the more specific myth concerning the aged and their families as outlined above. Whatever the specific cause, the effect remains that there has been no systematic investigation of the efficacy of family therapy in breaking down some of the maladaptive relationship patterns surrounding the elderly and their families. It is toward this end that Manaster (1967) developed a family group therapy program at a Chicago Home for the Aged. The program, with 8 to 12 relatives of patients meeting at one time, was designed to be an oppor- tunity "for the participants to look at their own feelings about their parents. . . . Lecturing, information-giving and reassurances were held to a minimum" (pp. 302-303). More specific objectives were to foster an awareness in relatives of the reasons for the patient's behavior and of their own feelings and reactions to the institution- alization and how these affect their relationships. Manaster reports that almost 60% of all the relatives invited responded favorably to taking part in the program; "many relatives began to recognize the basis for some of their anxieties and guilt feelings, and came to the realization that they had not 'dumped' their parents" (p. 304). In addition, he reported that relatives dis- covered by these therapy sessions that "they were not 21 alone in their feelings, and that their reactions were not abhorrent and horrible" (p. 305). Finally, an added benefit was the growing awareness on the part of the staff that the resident was not an isolated person but part of a functioning family unit. While programs such as Manaster's have provided some encouragement that intervention in nursing home patient-family relationships is feasible, they remain both isolated and unsubstantiated instances of actual treatment attempts. It is still impossible to find a systematic and well-researched approach toward solving the problem of family involvement in the lives of nursing home patients. Moreover, none of these few treatment programs have been established from a firm theoretical understanding of the various parameters of this problem, and it is this deficiency that the present study strives to remedy. The Present Research The author has been involved for the past two years as coordinator of a comprehensive research project evaluating the effectiveness of mental health consultation and training services to nursing homes (Lynn, Fargus, & York, 1974). In this project it has become evident that nursing homes do not make enough of an effort to facili— tate involvement of family members in the lives of their patients. Often, in case consultations about difficult 22 or problem patients, much of the acting-out behavior was felt to represent in some way anger toward the family for placement or for lack of visiting. Further indi- vidualized contacts with family members verified both their worry for their relative and their feelings of unease about visiting. In addition, the nursing home staff often reported that families who complained a lot were those families who seemed to be having the most trouble communicating with their relative. Recognizing this, a small planning group of staff at one nursing home, led by the author, set up two pilot meetings with some families of their patients; 18 rela- tives attended the two meetings, about 60% of all invited. The major subjective finding from these meetings was that families were eager to meet as a group and talk about their problems with their relative, and also felt a need to get professional advice on some very specific psycho- social aspects of aging. It also became obvious that for some of these families the intervention may have been too late, as they had already established the unproductive patterns of guilt, martyrdom, or burden-bearing as described by Brody and Spark (1966); in all of these such cases, the relative showed evidence of great mental debilitation. For these families, an intervention before placement or early in the process may have prevented the deterioration of their relationship. 23 The present research study was aimed at expanding and elaborating some of the subjective findings of these early family meetings. Through a historical examination of the placement process and an investigation of the perceived needs of families of nursing home residents, this study is intended to shed light on appropriate programmatic interventions. Specifically, the following questions will be answered. 1. What factors are involved in placing a rela- tive in a nursing home, and how do these relate to further involvement of the family? 2. What are the needs as perceived by relatives with respect to their involvement with the nursing home? 3. What are the potential points for intervention by either the nursing home or an outside agency in order to facilitate family involvement? 4. What current support mechanisms are utilized, by families, and how do these relate to current family involvement? 5. What specific types of intervention would be most appropriate for families of patients at different functioning levels? 6. What are the relationships between family guilt concerning institutionalization of their relative and visiting practices, involvement, and support mechanisms? CHAPTER II METHODS Participants Participants in the study were all patients at one of three Lansing area nursing homes as of June, 1975. The seventy-six patients and their families were a subset of a random sample of 116 patients assessed in a previous study on mental health intervention in nursing homes (Lynn, Fergus, & York, 1974); patients were excluded because of death or discharge from the home (n=4), lack of any family in the area (n=l7), refusal of families to participate (n=10), or family unavailable for interview (n=l9). Thus, the final sample consisted of 76 patients and their families who lived within a 25-mile radius of Lansing. The specific family member to be interviewed was defined as that person identified on the patient's chart as "person to contact in emergency." The three nursing homes chosen were all owned and operated by Provincial House, Inc., a company with a chain of nursing homes and other health care facilities across Michigan. These homes were chosen because of 24 25 their similarity to each other in size (about 110 beds), programs, and administrative policies. In addition, it was felt that these three homes were representative of other proprietary nursing homes in Michigan and across the country, with approximately 70% of patients being paid for through public funds (Medicaid, Medicare), with staff-patient ratios meeting both Federal and State standards, and with a similar sex ratio, mean age, and disability level of patients to that reported in much of the literature (Brody, 1973; Gottesman & Bourestom, 1974). Interview Methods A11 interviews with patients' families were conducted by a registered occupational therapist (OTR) with 11 years experience in hospital work including family training. Families were contacted initially by a letter of introduction (Appendix A) after addresses were provided by the nursing home administrators. Following this, the interviewer telephoned all those who had not indicated an unwillingness to participate and scheduled appointments. Interviews took place in all but 9 instances in the home of the interviewee; these others took place in the respondent's office (n=3) or in the interviewer's office at St. Lawrence Hospital (n=6). The formal interview took an average of 45 minutes to administer. 26 Patient Assessment Methods All data on patients, as presented below, was collected in conjunction with the Nursing Home Training and Consultation Project at St. Lawrence Hospital CMHC. Ratings were completed by nurses; archival data were gleaned from patient charts by the Project's research assistant. Measurement of Patient Functioning Leve1--BOP The behavioral and physical functioning of patients in the study was measured using two nurses' observational instruments, the Behavior of Older Patients Checklist (BOP) and the Physical Capabilities Checklist (PCC). The BOP (Appendix B) is a 43-item inventory developed specifically for nursing home research (Fergus, York, & Calsyn, 1975). Inter-rater reliability between nurse (R.N.) raters was established by having three pairs of nurses rate 20 patients each; reliabilities measured .92, .91, and .70. The BOP is rationally divided into seven separate scales, as follows: Cognitive Functioning This dimension measures the patient's ability to: (l) recall past and present events, (2) identify time, place, and person, and (3) possess sound judgment with regard to daily activities. The internal consistency 27 for this scale was .92, using Hoyt's analysis of variance technique. Lack of Social Interaction The degree to which patients initiate and par- ticipate in conversation and activities is measured in this dimension. It thus could also be characterized as an activity scale. The internal consistency was .88. Verbal Hostility This dimension measures degree of anger and irritability voiced by the patient. It also taps lying and verbal expressions about people attacking, or cheating him/her. The internal consistency was .86. Physical Hostility Both physical violence to objects and people are measured in this dimension. The internal consistency was .79. Depression For this scale patients were rated on the degree to which they had verbalized feelings of depression, worthlessness, and thoughts of suicide. The internal consistency was .82. 28 Psychotic Behavior This dimension measures delusional, hallucinatory, and other psychotic behaviors which may indicate a need for psychiatric hOSpitalization. The internal consistency measure was .81. Messiness This dimension taps willingness to care for one- self and keep one's appearance as presentable as possible. The internal reliability for this dimension is .74. Measurement of Patient Physical Functioning--PCC The Physical Capabilities Checklist (Appendix C) enables nurses to evaluate patients on a five-point scale ranging from total self-sufficiency to total dependency in the following four areas of functioning: self-care (toileting, feeding, bathing, grooming, dressing), sensory capabilities (hearing, speaking, seeing), ambu- lation, and activity level. Family Interview A 45- to 60-minute structured interview with the family of each patient was employed to assess the family variables crucial to this study (Appendix D) including the following areas: 29 Pre-placement Problems Questions in this area were designed to elicit information concerning the pre—placement history of the patient and his family and the factors involved in the decision for placement and choice of home. An extensive checklist of 28 items questioned whether certain types of problems existed for the patient prior to placement; in addition, relatives were asked to decide which of these problems were crucial in leading to the decision for institutionalization. Five separate problem scales (see Table l) were derived from this checklist (Question 7, Appendix D), creating variables in the following areas: physical problems (stroke, illness, broken bones, etc.); sensory problems (speech, hearing, sight); social problems (e.g., death of spouse, poverty, loneliness); emotional problems (e.g., depression, violence, grouchiness); and mental or cognitive problems as would be indicative of organic brain syndrome (e.g., loss of orientation, con- fusion). 'Preeplacement Family Involvement Further questions were intended to look at the degree of involvement of the family with the elderly relative prior to institutionalization. Included in this was an assessment of the relative's living situation in the two years before going into a nursing home; of special interest was the question concerning whether the 30 Table 1 Variables Assessed on Family Survey Questionnaire Question Variable or Scale Number (3) Appendix D PROBLEMS BEFORE PLACEMENT Physical problems before placement loss of ability to walk loss of use of limb(s) loss of continence severe physical illness stroke heart attack broken hip or leg (c) (d) (b) (n) (0) (p) (q) \JQQQQQQ Sensory problems before placement (e) (f) (9) severe impairment of eyesight severe impairment of hearing severe impairment of speech \lflfl Social problems before placement death of spouse loss of ability to drive ran out of money poor nutrition no more friends (a) (b) (m) (w) (x) \IQQQQ Emotional or psychological problems before placement (r) (S) (t) (u) (v) (y) depressed grouchy violent hallucinated delusional alcoholic \lflfldqq 31 Table l--Continued Question Variable or Scale Number (3) Appendix D Cognitive disabilities before placement loss of orientation to time 7 (i) loss of orientation to place 7 (j) started misidentifying others 7 (k) loss of memory 7 (1) general confusion 7 (z) PRE-PLACEMENT FAMILY INVOLVEMENT Prior living situation 3, 4, 5 Alternatives to institutionalization 8 Personal care assistance 6 bathing dressing feeding toileting transferring Household assistance 6 light chores heavy house-cleaning laundry shopping cooking medical help Prior telephone contact 24 (a) Prior visits 24 (b) NURSING HOME CHOICE PROCESS People influencing in decision 9 Ultimate decision 10 Factors influencing choice of home 14 Homes visited before choosing 11 Times visited final choice home 12 Did relative visit home too? 13 Relative's acceptance of decision 15 FAMILY VISITING PRACTICES Number of visits monthly 16, 2 Taking relative out 23, 23 (a) Enjoyment of visits 20 32 Table l--Continued Question Variable or Scale Number (s) Appendix D FAMILY VISITING PRACTICES (continued) Problems on visits emotional problems 19 (a)(b)(e)(f)(g) cognitive problems 19 (c)(d) Activities on visits 18 SUPPORT SYSTEMS Support with physical aspects 21 Support with emotional aspects 22 Most difficult problem to cope with physical, emotional, or mental 29 GUILT 17 PROGRAMMATIC NEEDS 30 MISCELLANEOUS DEMOGRAPHIC VARIABLE Marital status of patient 46-pt. chart Age of patient 45-pt. chart Sex of patient pt. chart Socioeconomic status of patient 31-32 Socioeconomic status of family 37, 38, 39, 40 MISCELLANEOUS DESCRIPTIVE VARIABLES Length of stay at nursing home 44-pt. chart Method of payment 42-pt. chart Regular psychotropic drugs pt. chart Special (PRA) psychotropic drugs pt. chart Changes in family concern since placement 25 Changes in family routine since placement 26 33 family attempted to solve the problem by taking their relative into their home. In addition, the other possible alternatives to institutionalization were presented to the family in an effort to ascertain both awareness of these programs and attempted utilization. Included among these were Visiting Nurses, home health and housekeeping aides, and meals-on-wheels. (For a complete listing, see question 8 in Appendix D.) The final measures of family involvement with their relatives were two variables, one measuring amount of personal care assistance given to the relative before placement and the other the amount of household help. The former variable was a scale con- structed from five items in question 6, with an internal consistency of .79; the latter scale comprised the remain- ing six items in question 6, internal consistency = .81. (See Table l for a complete breakdown of these two scales.) . In addition to these variables, two others assessed the number of times weekly/monthly that the family had con- tact with the relative on the phone or visiting prior to placement. NursingiHome Choice Process The final area of inquiry in the placement process concerned the process of deciding on institutionalization and choosing a nursing home. This included the amount of influence in the decision held by the physician, by the nursing home administrator, by the other relatives, 34 by a hospital social worker, and by the patient himself (Question 9, Appendix D). In addition, another question assessed the factors important in the actual choice of a home, including location, availability of bed, quality of staff, care, or programming, and condition of other residents (Question 14); these were supplemented by variables ascertaining how many homes were actually visited before choosing, how many times the chosen home was visited, and whether the elderly relative visited with the family. The final question in this area assessed the family's perception of how their relative accepted the placement in a nursing home. (See Table l for com- plete listing.) Family Visiting Practices The second major area of investigation in the family survey assessed the quantity and quality of family visiting to the nursing home patient. Quantity was measured by a self-report of number of visits monthly, as nursing home records are not adequate in this area. (See Question 16, Appendix D.) Also, one question looked at how often the family took the patient out of the home, and another at whether they visited more or less often at time of interview than in the past. Quality was measured by a self-report of the degree of enjoyment of visits (Question 20). Also, a separate question looked 35 .at the types of problems encountered by the families on visits; from this, two scales were extracted, one measur- ing emotional problems presented by the relative in visiting (internal consistency = .55), the other measur- ing cognitive-orientation problems (internal consistency = .64). See Table l and Question 19, Appendix D, for further explication. Support Systems Variables in this area were designed to measure the degree of support the families felt in dealing with the emotional and physical problems of their relatives. To this end, families were asked to rate separately whether they received support from the physician, the nursing home staff, other relatives, a clergyman, or a social worker on both physical and emotional concerns. For later correlational analysis, two variables were created: support from the physician, and support from nursing home staff (combining aides, nurses, and admin- istrator, Questions 21-22, Appendix D). In addition, an open-ended question (29, Appendix D), concerning the problems with which families found it hardest to c0pe, was coded to separate these into three dichotomous variables--whether they had trouble coping with relative's physical problems, emotional problems, or confusion- related problems. Finally, several of the items from Question 27, concerning problems perceived by the 36 families, were grouped into a scale of total degree of direct problems with the patient, with a reliability of .63. Table 1 provides a summary of the variables in this support section. 92.1.12 The five separate statements in Question 17 were summed to make one scale which measures the families' feelings of guilt regarding the nursing home placement. Internal consistency of this scale was .70. Programmatic Needs Questions in this area were designed as a need assessment of the willingness of families to take part in programs in the nursing home. The seven separate programs in Question 30 were summed to make one overall scale of willingness to participate, with internal con- sistency of .79. In addition, families were asked whether they had actually taken part in any programs like these before; from this, one dichotomous variable was retained, indicating whether the family had met and talked with nursing home staff before placement. Miscellaneous Variables Variables in this category are presented in Table 1. Of special interest are two that assess the changes in the families' routine and concern about their relative since placement (Questions 25 and 26). In 37 addition, amount of psychotropic medication (taken from medical charts), method of payment, and length of stay at the nursing home were also measured. Scope of the Analysis The purpose of this study, as stated above, was to examine the factors related to family involvement in nursing homes; thus, the data analysis was carried out on several different levels, from simple frequency count statistics to cluster analytic techniques (Tryon & Bailey, 1970). The frequency distributions and descriptive sta- tistics of many of the variables were of crucial impor- tance to the need assessment aspects of this survey, and thus this was the first level of analysis. Using these results, many of the variables were grouped into scales for simplification of the correlation matrices, and many were eliminated because of inadequate variance or because of limited interest beyond their descriptive qualities. Testing of the major hypotheses was carried out either by correlation or by analysis of variance. Finally, an empirical-V and a preset key cluster analysis were employed for a further study of the interrelationships of the variables. CHAPTER III RESULTS Descriptive Statistics--Needs Assessment Nursing Home Placement Process Many of the factors which impinge directly on any programs to be planned can be seen in the descriptive statistics relative to the placement process. One major set of variables measured the families' perceptions of the elderly relatives' problems prior to placement. From these it can be seen that physical problems were by far the most prevalent, with 87% of the sample report- ing one or more problems. Cognitive problems were reported in 42% of the cases, emotional problems in 58%, sensory problems in 37%, and social problems (including nutrition, loneliness, etc.) in 47%. Essentially the same order can be seen when an assessment was made of whether the reported problems were determinants of institutionalization. (See Table 2.) The prevalence of physical problems is borne out by the fact that 45 38 39 out of 76 patients (59%) had spent time in the hospital directly before nursing home placement, with the average stay being 6.8 weeks. Table 2 Pre-placement Problems Reported as Determinants of Institutionalization Reported in % of Cases Physical problems 87% 62% Emotional-psychological problems 58% 28% Social problems 47% 34% Mental (cognitive) problems 42% 24% Sensory problems 37% 10% The helping involvement of the families with their older relatives before placement was also assessed here; the proportions of families providing help with 11 separate areas of functioning can be seen in Table 3. In addition to the physical help provided, 30% of the families took the older relative into their home before placement, while all but 6% of the others maintained frequent telephone contact (§'= 5 calls per week) and all but 4% visited (§'= 9 visits per month). Although this percentage of family involvement may be inflated somewhat by a sampling procedure which eliminated 40 geographically distant relatives, it remains an important figure in the light of the fact that only 8% of the original random sample were excluded for this reason. Table 3 Percentage of Families Providing Help Before Placement in Areas of Need Help With: % Providing Regular Help Shopping 72% Laundry 69% Medical affairs 69% Heavy cleaning 69% Cooking 58% Light cleaning 42% Bathing 32% Dressing 21% Toileting 12% Transferring 10% Feeding 4% A third area of needs assessment questioned the families on their awareness of community agencies pro- viding services to the elderly which might have been used before placement, and on whether they actually made use of these alternative services. While some programs had good community awareness, such as Visiting Nurses, which all but five families knew of, other such as home health aides (40% aware), and home housekeeping aides (34% aware) were far from well known. The actual usage figures are 41 drastically lower, with only one family trying house- keeping or health aides, and with Visiting Nurses having the highest utilization at 20%. A further area looked at was the actual decision for placement and choice of a nursing home. In 83% of the cases the family's or patient's physician was of some or much importance in the decision to institution- alize, while the patient himself had importance in only 19%. Hospital social workers had influence in 43%, but the nursing home personnel or administrators themselves were influential in only 12%. In only one case did the patient make the ultimate decision to go into a nursing home, while in all others the decision was made for the patient by a family member. This coincides with the fact that only six patients (8%) actually visited the nursing home before placement. The choice of which nursing home to use is one that is not characterized by a great deal of searching, as 45% of the families did not visit any at all, 12% visited one, 12% visited two, and 31% visited three or more. Only eight families visited more than once to the home they chose, while 39 (51%) did not visit this home at all. Availability of a bed and location of home were the most influential factors cited in choice of home, with 75% emphasizing the influence of availability and 42 62% location; only 35% looked at the quality of the staff, while a negligible 12% considered the quality of the activity program. Family Visiting Practices Quantity of family visiting varied greatly, from a low of one visit per month (n=2) to a high of two visits daily (n=l). Mean number of visits per month was 12, with the modal number being 4, or once weekly (n=9); standard deviation was 10.3. The mean number of times that the families took their relative out of the nursing home was nine times per year; however, 32 (42%) never went out, and the mean was inflated by a modal value of 12, or one excursion per month. Quality of family visiting was initially assessed by a self-report of enjoyment; here, the distribution was as can be seen in Table 4. Thus, a significant Table 4 Family Ratings of Enjoyment of Visits % of Total Visits Enjoyed n of Families % of Families 0-10% 14 18.9 10-35% 8 10.8 35-65% 16 21.6 65-90% 9 12.2 90-100% 27 36.5 43 number of families (approx. 40%) enjoy their visiting less than half the time. In addition, 57% reported some problems with their relative's confusion on visiting, and 83% reported some problems with their relative's moods or emotions. A breakdown of these emotional problems reveals that almost 50% of the patients are sometimes or often grouchy, while 58% seem depressed sometimes or often. Support Systems The number of families saying that they got much support in dealing with physical problems was greatest in relation to staff nurses (57% got much support, 31% some), nurse's aides (40% and 22%) and administrators (25% and 25%); surprisingly, while 35% of the families got much help from the patient's physician, a full 51% said they got no help at all. The pattern is similar regarding support in dealing with emotional or psycho- social concerns, although the overall level of support is much lower. Once again, staff or floor nurses are most helpful, with nurses' aides second, and adminis- trators and doctors equal; here, 67% of the families got no help at all from the physician, and 50% got none from the nurses, the top-rated group. The three variables concerning the toughest things for the families to cope with showed that 37% 44 had most trouble with problems such as confusion and reduced mental functioning, 30% had most trouble with emotional changes, and only 16% had most trouble coping with their relative's physical illnesses. Programmatic Needs Families were questioned as to their interest in and perceived need of several types of possible programs: 67% felt that they would like to meet with staff; 30% would meet with other families; 46% would meet with some type of counselor (22% of these would want to include their relative); 33% would have been interested in meeting with someone to learn about nursing home alternatives; 51% would like to attend classes on aging; and 48% would be interested in getting advice on how to improve visiting. A variable created from the sum of these seven programs indicates that only 17% of the families said they would not be interested in any, while 40% would take part in four or more. Regarding program usage in the past, the only program with any significant figures was "meeting with staff," which had occurred, informally, in 29% of the cases. Cluster Analysis of Variables Cluster analysis (Tryon & Bailey, 1970) is a sta- tistical technique which can be used to create groupings of variables on the basis of their similarities and 45 differences; by this technique, one can discover the general properties of variables by an objective pro- cedure which groups variables without implying any causa- tive underlying dynamics. Multivariate cluster analysis (V-analysis) involves the removal of successive clusters of items with high intercorrelation from a complete cor- relation matrix. In this way, the total number of factors which can reproduce the full array of intercor- relations is minimized without loss of generality. For this study, a cluster analysis was performed using variables describing the resident's history before institutionalization, his placement process, his current functioning, and his and his family's demographic char- acteristics. Because a subject variable ratio of less than 2:1 was maintained for the first V-analysis, caution must be used in drawing strong inferences from the results. Nevertheless, this may be adequate for forming some tenta— tive conclusions in such an exploratory and needs assess- ment study. The original V-analysis produced eight clusters of variables, each grouped around a set of collinear defining variables. The results of this preliminary analysis appear in Appendix E. In order to create a more optimal solution, a preset key cluster analysis was performed; for this technique, the definer variables of each cluster were preset in a manner which would give 46 logical coherence to each cluster. In addition, several variables with low communalities and one cluster were eliminated. This preset key cluster analysis is presented in Table 5. 8 The seven clusters in Table 13 represent the seven most significant characteristics or prOperties which under- lie the variables entered. Cluster 1 suggests visiting patterns and activities, specifically the families who visit more are also those who enjoy the visits more and tend to do more physical things on visits, while placing less emphasis on talking. Cluster 2 represents an independent grouping of all support mechanisms both on physical and emotional issues, from the physician and from the nursing home. Factor loadings suggest that those who get some support tend to get it from all sources. Because of the high intercorrelations of these variables, they were all set as definers in the preset key cluster analysis; neverthe- less, no other variables had high enough loadings to fall into this cluster. Cluster 3 describes the patient with the type of functioning problems which may be a result of organic brain syndrome: messiness in personal hygiene, dis- orientation to time andplace, lack of interest in the surroundings, and, with a weaker loading, sensory impair- ment. Cluster 4 is a cluster describing more physically 47 Table 5 V-Analysis Preset Key Cluster Structure Variables Factor Loading Cluster 1 Visiting Practices 1. Total number of visits (D) .5574 2. Greater enjoyment of visits .5526 3. Do more active things on visits .5513 4. Visit more now than at first place- ment .5343 5. Do less verbal things on visits .4885 Cluster 2 'Support 1. More support from physician with physical aspects (D) .7489 2. More support from physician with - emotional aspects (D) .6699 3. More support from nursing home staff with physical aspects (D) .6045 4. More support from nursing home staff with emotional aspects (D) .5712 Cluster 3 Organic Brain Syndrome Symptoms l. Messiness (D) .8574 2. Impairment of sensorium (D) .8447 3. Lack of interaction (D) .6887 4. Impairment of sensory abilities .3721 Cluster 4 Pre-placement History 1. More physical problems at placement (D) .6332 . 2. More time in hospital (D) .6263 3. Less social problems at placement (D) .5202 4. Impairment of ambulation .4338 5. Male .4162 6. Less emotional problems at placement .3834 7. Visited fewer homes before placement .3763 8. Less emphasis on staff quality in home choice .3001 48 Table 5--Continued . Factor Variables Loading Cluster 5 Psychiatric or Emotional Problems at Present 1. More verbally hostile (D) .9522 2. More depressed (D) .5062 3. Receive more psychotropic drugs on PRN (as needed) basis (D) .4974 4. More physically hostile (D) .4805 5. Have more emotional problems with family on visits .3330 Cluster 6 Cognitive Dysfunction l. Presenting more orientation problems on visits (D) .7998 2. Family has more difficulty coping with cognitive problems (D) .6836 3. More mental problems before placement (D) .6818 4. More psychotic behaviors .4498 5. Family paid more attention to other residents' condition at admission .3481 Cluster 7 Pre-placement Living Situations 1. Did not live alone (D) .8381 2. Had more help from family in household tasks (D) .7333 3. Had more help from family in personal care tasks (D) .5434 4. Institutionalization helped stabilize family routine more (D) .4101 , 5. Family tried more alternatives (D) .4001 6. Lived with a relative (D) .3701 7. Lived with another person (D) .2239 Note. (D) indicates variables which are cluster definers. 49 impaired patients at placement; these patients had greater physical problems and were also in a hospital, and tended to be nonambulatory and female. In addition, they had less tendency to show social or emotional problems at admission, and their families tended to visit less homes and pay less attention to staff quality in choosing a home. Thus, this cluster can be said to represent the patients for whom placement was for pressing physical problems and thus was less deliberate and planned. Cluster 5 pictures the acting—out and emotionally troubled patient; variables loading on this cluster describe someone who is both verbally and physically hostile, acts depressed, presents emotional upset to his relatives, and must be given psychotropic drugs on a PRN (as needed) basis. Cluster 6 is another picture of the mentally impaired patient. Variables here describe a patient who is disoriented when seeing his family and had many orien- tation and memory problems before admission; because of this, this patient was rated by staff as being a high risk for psychiatric institutionalization as many behaviors appear psychotic. In addition, the family sees coping with these mental problems as their greatest difficulty, and felt that the condition of other residents was an important factor in choosing a nursing home. 50 The last cluster, Cluster 7, is internally consis- tent in representing most of the pre-placement variables, such as living arrangements, amount of help gotten from the family, number of alternatives tried, and effects on family routine. The negative loading on the variable describing patients who lived alone clearly suggests that these people got less help than those who moved in with a friend or relative. The relationship between number of problems of the patient and family quest for support confirmed in the raw correlation matrix below is alluded to in the inter-cluster correlations (Table 6). In the preset key analysis there is a correlation of .49 between Cluster 2 (support mechanisms) and Cluster 6 (mentally impaired patients). The similarity in content between Clusters 3 and 6 is also borne out empirically with an intercorrelation of .60. Finally, the negative correlation (-.30) between Clusters 4 and 6 suggests that mental and physical impairment are exclusive of each other in the families' minds; in other words, the family tends to see the problems of their relative as along one of these lines only. A more detailed examination of the result of the cluster analysis is provided in the hypothesis testing section which follows. 51 ooo.H Hmva. mmOH. ammo. wwth. vomaql mmmo.l b HmumDHU ooo.H mood. Qomom. vamm. nmhmw. Mmmvm.l m Hmumfiao ooo.H vmmH.I Hana. Hana. avmo. m HmumSHU ooo.a mvvo.l MMHMN.I ommH. v HmumDHU ooo.H Mmomm. mama. m HmumDHU ooo.a mmmo. N kumDHU ooo.H H Hmumadu h w m w m N H mammamsd Houmsau mom uwmmnmlumcowumamnuoo HmumsHounmusH m wands 52 Hypothesis Testing As indicated in the introduction, nine specific hypotheses were made concerning relationships between various variables. 1. The families of more highly impaired patients will have lower quality visiting. Impairment of patients was assessed by the BOP and PCC. The variable concerning enjoyment of visits was seen to correlate significantly in a negative direction with the scales "messiness" and "cognitive functioning" from the BOP, and with the scale "self-care" from the PCC. All of the other BOP scales also correlate negatively with enjoyment, although not at a significant level. (See Table 7.) In addition, orien- tation problems with visiting correlate positively with the BOP scales, "messiness," "lack of social interaction," "cognitive functioning," and "psychotic behavior," as would be expected. The families' report of emotional problems on visits also correlates significantly with "depression," and "verbal hostility." Also, if the families' report of orientation problems and emotional problems on visiting is considered an indicator of impairment, one can see that enjoyment of visiting decreases significantly as these are present. The cor- relation between enjoyment and orientation problems is -.36 (p < .001), and between enjoyment and emotional problems is -.29 (p < .01). 53 as. v a “mo. v a n H «mm. omo.: mso.u Hod. mam>mq mua>auoa mo pamsnmaagsao «Ho. oao.u Goa. mmo.u suflaanmmao muoumasns< moo. mmH.I mma. moo. wuflHHQMmHQ whamcmm mmH. amH.u have. mmm~.n suflHHQMmHo mumoumamm mmo. mma.l Qmmm. vam.| mmmcflmmwz Hmo. «mo. nsmm. mma.u uofl>mnmm ofluonosmm who. swam. mmo.a mHH.u coflmmmummo mmo. omo. owe. mmo.: suaaaumom Hmoflmmsm mma. 64mm. woo. NAH.- muflaaumom Hmnum> mmo. mnmm.n pawn. GHH.I coauomumucH Hmaoom mo some mas. mam.u swam. m~¢~.n mamanoum maaaoauoasm m>auacmoo mu.._..m..n> m#Hm.n> CO mu...nm.n> SO MUHMHNV Hmmmsz mfimwnoum. mfimwnoum wo. Hmuoe HocOHDOEm cowuoucmflno unm8>0msm muwmw> mo muflusmso was Muwamso mawsmm sues mucwwumm mo mcwcowuocsm Hmowmhnm paw Hmuow>mnmm mo cowumamuuoo b OHQMB 54 Thus, as can be seen, 11 of the 33 correlations (see Table 5) relevant to the hypothesis are significant at the .05 level. If the impairment variables were not intercorrelated, the probability that this was a chance finding would be less than .001 (Wilkinson, 1951). How- ever, since the impairment variables are intercorrelated, the value of .001 is inflated. The previously mentioned cluster analysis also provides information relevant to this hypothesis. One impairment cluster (Cluster 6) somewhat related (r = -.24) to the visiting cluster (Cluster 1). However, the other impairment cluster (Cluster 3) is not related to the visiting cluster. Thus, while there is some relationship between impair- ment and quality of visiting, the relationship is not overwhelming. 2. The families of more highly impaired patients will visit less often. Total number of visits does not correlate significantly with any of the impairment measures. Thus, it seems that impairment is related to quality of visits but not quantity. 3. Families with more resources available to aid understandigg will have higher quality visiting. Enjoy- ment of visits is not related significantly to the var- iables concerning support from physician or from the nursing home staff. There was a significant positive 55 relationship between emotional problems on visiting and amount of support received from both physician and nursing home in coping with emotional problems; this seems to suggest that those who need the support are those who receive it, although the correlation is not high (Table 8). 4. Families with more resources available to aid understanding will visit more often. No relationship was found here between resources for support and quantity of visiting (Table 8). 5. Families who tried more alternatives to nursing home placement will feel less guilt. No relation- ship was found (r = .099), although this may be influenced by the small variance of the variable assessing alterna- tives tried (mean = .539; SD = .824). 6. Families of patients with more serious physi— cal problems at admission will feel less guilt. There was no relationship between physical problems and guilt (r = 0.022), and no relationship between number of weeks in hospital (as a measure of seriousness of physical ill- ness) and guilt. 7. Families who involved patient in choice of home and decision for placement will feel less guilt. No significant correlation was found between the patient's 56 mo. v on voo.| mmo.| momm. noH.I meow madmnsz scum mEmHnonm HMGOAUOEm spas unommsm moa. noa.u asmm. amo.u meow mcamusz scum mEmHQOHm Hmowmmsm suds “Hommsm mmo. asm~.n msmm. mvo.u cmaoammem some mEmHnoum HMCOAHOEm nuw3 unommsm Hmo. ooa.n mac. ave. awaowmmnm some mEmHQOHm Havammam nuw3 uuommsm muflww> mufimfl> so mufimw> so muwmw> Hmmssz mEmHQOHm mEmHnoum mo Hmuoe Hoseauosm cowuwusmfluo ucmEMOMGM muHmH> mo muwucmso can muaamso aaweom saws mamanonm Hmsowuofim can Hmowmwnm m.m>Humamm mswosoumumosb :fl uuommnm mo cowpmamunoo m.mHQMB 57 importance in the decision for placement and the families' guilt (r = .102); it was not possible to compute a cor- relation between guilt and whether the patient visited the homes because of the lack of variance in the latter variable. 8. There will be a significant interaction effect of family guilt and patient impairment with respect to total number of visits, such that a. families with high guilt will visit less often to more alert patients than families with low guilt; b. families with high guilt will visit more often to totally confused patients than families with low guilt; c. families with high guilt will visit more often to partially confused patients than families with low guilt. For this analysis, the variables guilt and mental impairment were each broken into three groups of equal size, and a two-way analysis of variance was computed with total visits as the dependent variable. No sig- nificant main effects were found; a significant inter- action of guilt and impairment existed (F = 3.61, p < .01). Inspection of the cell means in Table 9 reveals that, indeed, families with high guilt did visit less to alert relatives and more to partially alert relatives than 58 Table 9 Breakdown of Mean Number of Visits Per Month by Family-- Guilt and Impairment Level of Patients GUILT Low Medium High 13.3 7.0 9.8 i 9.9 Low n = 6 n = 7 n = 13 n 26 IMPAIRMENT 6.3 13.8 23.3 i’ 14.0 (sensorium) Medium n = 7 n = 10 n = 6 n 23 15.5 13.9 7.5 x 12.7 High n = 11 n = 8 n = 8 n 27 i = 12.3 i = 11.9 i = 12.1 n = 24 n = 25 n = 27 59 families with low guilt. However, high guilt families also visited less to highly impaired patients than low guilt families. Thus, the major portion of the hypothesis was proven valid, while this finding concerning high guilt-high impairment interaction ran counter to expectations. It is possible that for families with high guilt visits to highly impaired patients proved too painful; likewise, for these high guilt families, visits to alert patients who could easily confront them with anger or guilt-invoking behavior were also too painful. High guilt families were found to visit more often to partially confused relatives; for these families, guilt may have been the motivating factor in visits, as hypothe- sized, and the family may have had some underlying feeling that visits would both allay their guilt and help improve the patient. 9. ,Patients who were involved in the decision for placement and the choice of home will have higher functioning level when measured at present. This hypothe- sis was tested by looking at the correlations between the variables from the BOP and FCC measuring patient functioning with the variables assessing the patient's input into the decision process. It was found that patients who were judged by their families to be more important in the decision for placement revealed fewer problems in the sensorium (orientation, cognitive 6O functioning) as assessed by present nurse's ratings (r = -.270). Of course, this cannot at all be construed as a causative finding; on the contrary, these patients also had less mental (cognitive) problems at admission (r = -.227). The only other significant finding was a positive relationship between patients' input into place- ment and nurse's rating of verbal hostility; this would make sense as one realizes that those patients who insisted on having some say in the placement process may also tend to have input into their treatment in a nursing home and thus may be perceived by staff as more hostile. Once again it was impossible to compute any correlations with the patient's input into actual choice of home because of the lack of variance in that variable. It is necessary to view these results in a somewhat cau- tionary light, however, as the probability of this many significant correlations in a matrix of this size by chance alone is .1019 (Wilkinson, 1951), even if there was no interrelationship between the impairment variables. (See Table 10.) Correlational Analysis In addition to the summary statistics comprising the needs assessment, and the correlations and analyses of variance in the hypothesis testing situation, a com- plete correlation matrix was computed and analyzed to look for other significant and meaningful relationships. 61 Table 10 Correlation of Patient Behavioral and Physical Functioning with Patient's Importance in Placement Decision Patient Importance in Placement Cognitive Functioning Problems -.270a Lack of Social Interaction .015 Verbal Hostility .074 Physical Hostility .283a Depression -.lll Psychotic Behavior .057 Messiness - -.024 Self-care Disability .153 Sensory Disability .157 Ambulatory Disability .205 Diminishment of Activity Levels .046 a p < .05 62 These will be discussed as they group around several of the main conceptual areas investigated in this study. Factors Influencing Choice of Home The intercorrelations between all of the possible factors influencing the actual choice of home (Question 14, Appendix D) present an interesting matrix (Table 11). As can be seen, the variable "availability of bed" has no significant correlation with any others, yet tends toward the negative side with all. Then, all the other variables are positively related to each other significantly (p < .01) in 6 of 10 instances. Thus it may be that if avail— ability was the major factor, all the others were not present; if availability was not important, people tended to look at all of the other factors. Another variable assessed how many nursing homes the family actually visited before choosing; this was found to correlate negatively (r = -.312, p < .01) with the degree of severity of the relative's physical problems before placement; it seems that families of more seriously ill patients may have less time or flexibility in the choice process. On the other side, relatives of patients with more serious social problems tended to visit more homes (r 3.16, p < .01). Whether the family actually visited the home finally chosen correlated highly with two factors influencing their choice process: cleanliness 63 Ho. v a a mo. v as evow. sham. aha. moa. hmo.l muswowmmm scene we coauwocou name naav nomm mma I mmmcflasmmao name. ommm. omH.| mnou Hmowmmnm mo muHHmSO nmo. Nvo.l mmmum mo MHHHMSO mmH.I meow mo cowumoon own no suaawanam>a mnemoammm mumu . mumpm 1%. 92.3.90 some. .0 “Eur EMMA”... cowuwpcoo huwamso huHHMSO . ... . meow mcwmusz mo mowoso wcwosmsamsH muouomm mo meowumawnuoonmusH HH OHQMB 64 of home (r = .553, p < .01) and the condition of the other residents (r = .460, p < .01). Then for those who did visit, it seems that the crucial factors in choice tended to be things which were easily assessed by a lay- man's eyes, rather than professional items such as quality of nursing care, or quality of activity program. In addition, visiting the final home chosen correlated negatively, but not significantly (r = -.109) with availability of bed as a major factor: possibly those who visited had more freedom in choice or time for choice, as their relative was less physically ill and immediate availability was not as crucial. Supporthystems-—Pre- and Post-Placement As indicated above, an entire set of variables examined the people who were supportive of and influential with the family in the placement process, and who were of assistance in understanding the patient's physical and emotional problems after placement (see Questions 9, 21, and 22, Appendix D). The discussion of the frequency distributions of these variables illuminated several interesting gaps in service and support; a further investigation of the cor- relations of these variables with each other and with other variables elaborates these findings. There were no significant intercorrelations between any of the four 65 pre-placement variables measuring the importance of the physician, the nursing home staff, the other family members, and the patient himself. Two of these variables correlate significantly with willingness to take part in programs planned for families; people for whom the physician was more influential tended to be less willing to be involved (r = -.397, p < .01), while peOple for whom the nursing home was influential tended to be more willing (r = .290, p < .05). There is a strong set of interrelationships among the variables measuring physical and emotional support from the nursing home or physician (see Table 12). Families who get one sort of support from one source tend to also get support from other sources; the strongest relationships are between the two kinds of support (with physical and emotional problems) from the physician (r = .638, p < .001) and from the nursing home (r = .480, p < .01). There are also relationships between these var— iables assessing support with emotional and physical problems and the variables looking at the families' difficulty in coping with mental (cognitive) or emotional problems, and the families' assessment of problems related to cognition on visiting (Questions 19, 27, 29, Appendix D). From the correlations of these variables (Table 13), it can be seen that the strongest positive 66 Ho v an .mo. v mm owv. vam. mmH. one. mmo.u mvo.u moo.u muommma HMCOMHOEM pcmumumpcn mama mmmum 080m mnflmusz .m ammm. nmmm. moo. va.- was. mmo. muomama HMOHmhnm pcoumumpco mam: mmoum 080m mswmnsz .5 ammo. RAH.- mma.u NmH.- ems. muommmm Hmcoaposm Ucmumnmpss mmamm smwowmmnm .m ma-.- omo.u mma.u namm. whomama Hmoamsnm pamumumpso mmamm cmfloflmmnm .m has. mom. 880.: ucmsmomam as ucmunomfiH menEmS haflamm .v ooo.o mmo.u uses umomam cw ucmunomsH unmflumm .m moo.| usmfimomam cw usmunomfiH mmmum 080m mcflmusz .m ucwfi IGOme CH ufimuhomEH GMHUHmfifim .H n m m w m N H usmfimomam Hound uuommsm msflmmmmmd mmHQMAHm> £ua3 coamwoma unmfimomHm cw uuommsm mcwmmmmm< mmHQMHHM> mo cowumamnnou NH OHQMB Ho.vm 67 a mo. v mm «no.1 mma. comm. muommmm HMGOHDOEM ccmum lumps: mamm mmmum 050m mcflmusz mma.u mmmm. mumm. muommma Hmoflmssm ecmum lumps: mama mmmum meow mcfimusz nmmm.u heme. nomm. muommma Hmcowuosm Usmumumcco mmamm Guacammnm wavm.n nomm. mho. muommmd Housmmnm pcmumumpso mmamm.cmw0Hm>£m mEmHnoum was on m and so Hoseauwmm mua3 Aamusmzv wamwmoum . . m>auacmoo nua3 mcflmou NUHSUAMMHQ . . . coaumuswwuo acaaoo muasoammflo mswmoo Ga muHDUHMMHQ hawamm was mufimw> so mEmHQoum mcfimmmmmd mmHnmaum> nufl3 moanmflum> unommsm mo macaumamuuou MH OHQME 68 relationship is that those people who experience coping with mental problems (e.g. orientation, memory) as sig- nificant tend to turn to the physician for support on both physical (r = .330, p < .01) and emotional (r = .426, p < .01) problems. However, those who have more difficulty with their relative's emotional state tend to turn away from the physician for the same types of sup- port (r = -.241, p < .05 for physical; r = -.295, p < .01 for emotional). These people also tend to avoid the nursing home staff as well, although the relationships are not significant. Patient's Problems Before Placement Several variables looked at the family's per- ceptions of their relative's problems before he/she entered a nursing home (Question 7, Appendix D). There was a significant negative correlation (r = -.316, p < .01) between presence of physical problems and presence of socially related problems (such as loneliness, poverty, poor nutrition, etc.). On the other hand, there was a positive relationship between the presence of mental (cognitive) and emotional problems (r = .361, p < .01), and between emotional and social problems (r = .254, p < .05). Beyond these three relationships, all of the other problem areas tended to be quite independent, as can be seen in Table 14. 69 Table 14 Intercorrelations of Pre-Placement Problems m m m m Pam E FIE E E «38 m mcu >9m m ccv HH OH NH HH OH ma HQ an we HQ 440 uao uzo +Jo +Jo L)H %$4 GL4 :14 0:4 OIL r:m 01m on. Ear U) n. U) S m Social Problems Physical b Problems -.316 Sensory Problems .093 -.066 Mental Problems -.054 -.069 -.129 Emotional .254a -.219 -.139 .361 ap .05 bp .01 70 There are several significant and meaningful relationships between these problem area variables and other variables in the study. First, there is a negative correlation (r = -.243, p < .05) between the presence of physical problems at placement and whether the family tried to talk to the staff about planning for their relative (Question 30a, Appendix D); this may indicate that the families of more seriously ill patients are less confused about the type of care needed for their relative and feel less need to get involved. The existence of mental or cognitive-related problems before placement correlates highly with the patient's later functioning level and the family's perception of this, which tends to verify that these variables are measuring the same con- cept: mental problems before placement correlates .508 (p < .001) with family report of mental problems on visit- ing; .472 with the BOP scale "cognitive functioning"; and .472 with the family report of mental problems being hardest to cope with. Willingness to Take Part in Programs This important need assessment variable (Question 30, Appendix D) was found to have several interesting relationships with other variables. There was a positive relationship between willingness and the nursing home's importance in the placement process 71 (r = .290, p < .05); this may indicate that those people who were more reliant on institutional resources for advice may also be more willing to get involved in their relative's treatment. This is supported by the addi- tional finding that there was a significant negative cor- relation (r = -.397, p < .001) between reliance on the physician and willingness to take part in programs; possibly these people have assigned the treatment of their relative largely to a third party, the doctor. This may not be totally necessary, as it was shown that there is no relationship between reliance on the physician and actual scope of physical problems. Furthermore, there was a strong positive relationship between level of guilt and willingness to take part in programs (r = .332, p < .01); this coincides with the above data on reliance on physicians and willingness in that those who tend to rely on the physician more also express less guilt (r = -.284, p < .05). Thus, while guilt may be a factor in willing- ness to participate, reliance on physician is both a nega- tive factor in reduced willingness and in reduced guilt. Finally, the length of stay that the relative has had in the nursing home correlates negatively (r = -.250, p < .05) with willingness to participate and also with guilt (r = -.268, p < .05); thus the length of stay may also be a factor along with reliance on physician in both reduc- tion of guilt and lack of willingness to participate. 72 Visiting Quantity and Quality Total number of visits made was found to correlate positively with greater enjoyment of visits (r = .308, p < .01), a result which even though it cannot establish a causative direction at least indicates that these two most important factors in family involvement are somewhat linked. In addition total number of visits was also correlated to amount of telephone contact before placement (r = .281, p < .05) and amount of visiting before (r = .298, p < .01), which may show that this greater involve- ment was present even before the relative entered a nursing home. Finally, total visits is related to what families actually do on the visits; those who do physical things, such as walking, combing hair, playing games, etc., tend to visit more (r = .307, p < .01) while those who just sit and talk visit less (r = -.272, p < .05). Enjoyment of visiting did not relate to either of these variables concerning what is done on visits; however, it was highly related to variables which describe the status of the patient. Enjoyment was lower if the family reported that the patient had orientation problems on visiting (r -.360, p < .01) and emotional problems on visiting (r -.289, p < .05). In addition, enjoyment was lower with more impairment on the BOP scales for messiness (r = -.342, p < .01) and cognitive impairment (r = .245, p < .05). 73 Whether the family ever took the patient out of the nursing home was highly correlated with five variables describing physical disfunctioning: walking impairment (r = -.387, p < .01); lessened activity (r = -.290, p < .01); inability for self-care (r = -.396, p < .01); messiness (r = -.251, p < .05); and sensory impairment (r = -.299, p < .01). Also, taking the patient out correlated negatively with greater length of stay (r = -.349, p < .01), which may be related to the fact that two factors influencing not going out also correlated with length of stay: walking impairment (r = .310, p < .01) and self-care inability (r = .345, p < .01). Finally, the families report of orientation or cognitive problems on visiting was correlated positively with several of the BOP and PCC scales; such as with (all p < .01); inability for self-care (r = .449); messiness (r = .559); cognitive impairment (r = .612); psychotic behavior (r = .327); and lack of interest in surroundings (r = .384). These orientation problems on visiting were highly related also to the families' report of mental condition as being toughest to cope with (r = .485, p < .01). CHAPTER IV DISCUSSION It is important in any needs assessment study such as this to recognize the limitations of the design and of the statistical techniques used in analysis. Although the subjects were all chosen randomly, it must be remembered that they are a random sample from a quite defined population, the residents and families in three Lansing nursing homes. Thus, generalization to other cities, or other nursing home populations, must be guarded, especially when there may exist gross dif- ferences in ethnic makeup, socioeconomic status, etc. In addition, the major statistical techniques employed in this anaIysis were correlative methods; it is neces- sary to remember that a correlation can not imply causation and that directionality in this type of correlative find- ing is not discernible. Nevertheless, several distinct patterns have emerged from this data, especially concern- ing the need for and design of programs to aid the families of nursing home patients and to facilitate pro- ductive involvement of these families in their relative's lives. 74 75 Placement and Choice of Home The first thing that becomes obvious in examining the variables concerning the pre-placement process is that families made little use of alternative services. Other than the Visiting Nurses program, which had almost 100% awareness and 20% usage, the other programs such as home health aides, housekeeping aides, Meals—on-Wheels, etc., were virtually unknown and unused. As more and more demands are heard from health planners, politicians, etc. for developing alternatives to institutionalization for the elderly in order to eliminate or postpone nursing home care, it will become necessary for these programs to find ways of making themselves visible and available. This is more important when considered with the fact that 33% of the families in this survey felt they would have liked more information on alternatives before nursing home placement. This ties in closely with another issue--the actual choice of nursing home. Data collected indicate that this was most often purely a matter of availability of bed; when availability was not an issue, families were then influenced by location and reputation. There was very little examination of staff quality, and no examination of the quality of the activity programming. Thus, given the fact that nursing home beds are increas- ing and demand may decrease as alternatives develop, it 76 becomes important to facilitate a more educated choice of nursing home by the patient's family. This could have two powerful effects: first, to create a competi- tive market among the private homes where one of the major criteria will be quality of care; second, to ensure that the families are more involved in the place- ment of their relative from the beginning and in gearing this placement to both of their needs. It seems, therefore, that one solution to this problem is the creation of a central agency in each area which would be charged primarily with advising and coun- seling older peOple and their families concerning proper noninstitutional alternatives and institutional care. In addition, this agency would assist in the referral and admission of the older person to a nursing home when necessary, and serve as a central clearinghouse for nursing home information. Several valuable sourcebooks for nursing home evaluation and selection are available, including those created by Michigan's Citizens for Better Care; this proposed central agency could insure adequate dissemination of this knowledge and, in addition, serve a monitoring function toward nursing homes. It is interesting to note that the Area Agencies on Aging are charged with these general duties as part of their information and referral services; they have, however, been traditionally geared toward assisting the elderly 77 who are still living in the community, and have stayed largely away from nursing home affairs. Nevertheless, the ideal location for such a nursing home I&R agency remains within the Area Agency; it is necessary, however, to reemphasize and redefine this specific function and to establish the appropriate linkages with nursing homes, hospitals, churches, and any other possible sources of referral. Family Involvement Any plan for increasing the therapeutic capa- bility of families in their older relatives' lives must be concerned with the present level of involvement. As was discovered, for the most part families tended to remain involved with their relative after nursing home placement. The average number of visits per family was three weekly, with the modal number being once weekly; only two families visited less than once every two weeks. This tends to reinforce the invalidity of some of the more prevalent viewpoints concerning the "dumping" of the elderly into nursing homes, where they are pushed from their families' minds forever. On the contrary, there was no correlation between number of visits and length of stay in the home, so involvement does not seem to decrease over time. There was found to be a definite decrease over time, however, in the amount that families took their 78 relative out of the home. This can be explained by the fact that patient excursions were highly correlated with physical health, and that physical health almost always deteriorates with nursing home patients. Thus, the relative infrequency of excursions with the family is less a sign of disengagement than it is a realistic response to the difficulty of taking the elderly person out. Other data corroborate the finding that families are willing to remain involved in their relative's lives. Almost 30% of the families took the older relative into their home before deciding on a nursing home placement. As has been shown (Spark & Brody, 1970), this is an extremely disruptive event in a family's history; 46% of all families reported that their household routine had stabilized significantly since placement of their rela- tive. It can be hypothesized that the strain placed upon the family by the intrusion of an older relative is reflected in the families' attitudes toward this relative and is in turn easily sensed by the elderly person. Thus, nursing home placement may often be a great relief for the family and, if not quite so welcome to the relative, at least a respite from the tension of being dependent on his grown children. The task, therefore, is to create an environment in which the willingness of the family members to remain 79 involved in the life of their relative can be channeled therapeutically to benefit both parties. It thus becomes important to examine not only the quantity of visiting as a measure of involvement but also the quality of visiting and factors which may directly improve it. This is particularly crucial as it was found that enjoyment of visiting had a high positive correlation with quantity of visiting; it can confidently be postulated that those who felt their visits were of higher quality and more personally satisfying were willing to visit more often. The first thing that becomes evident is that families of more mentally impaired older people may enjoy their visiting less. Many behaviors concomitant with mental deterioration in the elderly explain this. First, memory losses and cognitive dysfunction tend to cause repetitive speech, wandering thought processes, mis- identification of others, disorientation, and even out- right delusional ideas. Second, mental deterioration is often accompanied by a decrease in cleanliness and self-maintenance; thus the older person may begin to appear very sloppy, wear inappropriate clothing, and seem to lose all of his past dignity and self-respect. Third, the patient may revert to childish or inapprOpriate behaviors, extreme emotional lability, or total depen- dency on staff or relatives. 80 Thus, it is easy to see why visiting may be an unenjoyable or painful experience for the family member of a mentally impaired patient. Nevertheless, several other potentially damaging factors do not seem to impede enjoyment of visiting; among these are depression, verbal and physical hostility, and psychotic behaviors. This may be explained several ways. The older relatives may not exhibit these behaviors when they are visited by their families; in contrast to mental deterioration, all of these tend to be functional behaviors which can be more or less controlled by the person. In addition, these behaviors may be so long-standing that, as opposed to mental deterioration, they are well integrated into the families' conception of their relative and inter- actions with him, and are not perceived as age and/or nursing home related. Nevertheless, mental impairment may indeed decrease the families' enjoyment of visits; however, this impairment does not seem to correlate negatively with the number of visits the family makes. Thus, the problem becomes not so much one of convincing families to visit their relatives as it is of facilitating more productive and enjoyable visits. One method which can be proposed for working toward this objective is the initiation of family pro- grams in the nursing home. These may range from initial 81 orientation meetings with staff to family group meetings to classes concerning the process of aging and nursing homes. Questions assessing the families' willingness to take part in such programs revealed that only 17% of the families had no interest at all in getting more involved. Over two-thirds wished to be able to meet with staff, 51% would attend classes on aging and nursing homes, and 47% expressed interest in getting advice on how to make their visiting more productive and enjoyable. A lesser but still considerable amount, 30%, were inter- ested in meeting with other families to share concerns and problems. What becomes obvious, then, is that a large pro- portion of families feel a need to become more involved and knowledgeable in their relatives' care, and see formalized programs as one method of attaining this goal. These programs can be structured in several dif- ferent ways. The most traditional model would consist of classes concerning the aging process. Emphasis would be placed on the physiological and psychosocial changes in aging and how these interact with placement in a nursing home to create the specific types of behaviors which may seem so inexplicable to the family. Because of the prevalence of organic brain syndromes among nurs- ing home patients, a complete explanation of this dis- order and its concomitant behavior patterns would be essential. 82 A second type of family program, possibly serving as a follow-up to the teaching-oriented sessions, would be a training program in nursing home visiting. One of the major problems noted in the interviews was the lack of anything to do on visits; many families felt that they just sat and stared at their relative for an hour twice a week. Training families to visit would be geared toward improving quality and enjoyment of these visits for both parties and toward developing a thera- peutic and constructive role for the family. Special emphasis here would be placed on the family's role as a link between the past and the present and how to facilitate that linkage while helping the relative accept his present situation. Combining the techniques of role- playing and simulation with the specific knowledge about psychological functioning of the elderly would serve to clarify the role of the family member; this could be a major step in reversing the destructive guilt-anger cycle seen in so many relationships. The final type of program possible would involve group meetings of families. These meetings would be intended to assist the relatives in gaining support from others in the same position and in being able to discuss their concerns about the nursing home. Combining this type of function with the two above would serve to provide specific information and techniques for the family and support in using these 83 techniques. In addition, this group of families may develop into or link with an advocacy consumer group such as Citizens for Better Care, which would serve the additional function of monitoring nursing home care. Having nursing home staff members meet regularly with the family groups would also improve the continuity of care provided to the patients by affording a forum for sharing treatment goals and plans. Support Mechanisms The programs mentioned above all serve to fill a gap revealed by the data--that of the support the families feel they receive in dealing with the physical and psychosocial problems of their relatives. It was found that very little support is forthcoming from the physician, although this is not surprising given the reluctance of most doctors to work with the elderly and their relative lack of knowledge concerning the processes of aging (Miller, Keller, & Woodruff, 1974). Less than one-third of the respondents felt that they got any help from their relative's physician in under- standing psychological changes, and only one-half felt they got any help understanding the physical aspects. Thus, the medical profession is obviously not fulfilling a supportive role when it comes to nursing home care of the elderly and their families. 84 An encouraging sign was that the nursing home staff was somewhat filling this gap in supportive help for the family. Over 80% of the families got some sup- port from the nurses with physical problems, and almost 50% with emotional problems. Surprisingly, over 50% got physical support and 38% emotional help from the 'nurse's aides, a group traditionally looked upon as the least knowledgeable and professional in a nursing home. Thus, it can be seen that for many families the channels of communication with staff are already Opened. The task, then, is to facilitate the proper usage of these channels in order to improve the overall quality of nursing home treatment. The willingness of families to be involved in programs to help them with their rela- tives is related in an interesting manner to the support systems used by the family. Those families who tended to use the physician were less willing to take part, while those who relied more on the nursing home also expressed more willingness. This may be because those families who feel they can get support from the physician are satisfied with this level of support, while those who turn to the nursing home feel a need for still more input. If this hypothesis were true, the mandate would be to educate physicians to meet more of the needs of the families of their nursing home patients. However, this is unreasonable on two counts: from the data, it 85 can be seen that those who rely on the physician have no higher quality of visiting than the others, so getting support in that direction may not be a purely positive step; second, it is both impractical and unrealistic to expect that physicians would make the necessary changes even if they were proven beneficial. Thus, a more reasonable alternative, given both current knowledge and state of resources, is the facilitation of more contact between nursing home staff and families. A further benefit of this type of support system is opposed to that with the physician is that the nursing home staff have more contact and familiarity with the older patient, and have a much greater actual impact on the quality of his life. 9911.9. Many have hypothesized that guilt is a major factor impinging on all relationships between families and older patients (Kramer, 1964; Friedsam & Dick, 1964). An attempt was made to measure level of guilt in this study by directly questioning the family concerning this area. As is often noted, self-report data of this sort are of questionable validity. Some have suggested that the only response with any validity is a positive response, or, in this case, an admission of guilt; it is impossible to attribute validity with any confidence to a negative or denial response. However, it is even 86 more difficult to obtain a behavioral measure of guilt, and projective measures, such as the Geriatric Apper- ception Test (Wolk, 1972) or Szondi (Taylor, 1972) were beyond the scope of this study. Thus, any conclusions concerning this variable should be examined in this cautionary light. As was seen in the hypothesis testing situations, there was little relationship between guilt and any of the other variables. Families who tried more alternatives to nursing home placement did not, as expected, feel less guilt. This may be explained by the low variance of the variable assessing alternatives tried--most families tried none at all. Thus, if families tend to experience guilt in placing a relative in a nursing home, this guilt may only be related to their failure to try alternatives when there are sufficient alternatives available and accessible. However, there was another slightly nega- tive correlation which indicated that those people who tried taking their relative into their home before place- ment felt less guilt; in this case, this may be closer to a measure of alternatives tried. In addition, the expected negative relationship between guilt and severity of physical problems at admission was not evident. Part of this may be explained by the fact almost all patients had some physical problems. What this does indicate, however, is that families feel, 87 quite justifiably, that mental or psychological problems are as valid as physical problems as a determinant of nursing home placement. Often, in fact, it is much more taxing and difficult for a family to keep a severely confused and ambulatory relative in their home as opposed to one with a more restrictive physical illness. Another hypothesis concerning guilt which was not borne out was that families who involved their rela- tive more in the decision to go into a nursing home would feel less guilt. The rationale behind this hypothesis was that those families who did have more input from the older relative would be able to justify the placement as having been a decision of the patient. The absence of any correlation tends to negate this. However, it was shown that those families who tended to rely on the physician more for the decision for placement did feel less guilt. This indicates that some families are willing to assign the decision-making process elsewhere, and that those who do are able to feel less guilt about it. It is interesting to note that those families who rely more on the physician and feel less guilt are also less willing to take part in any programs, which could be indicative of a high degree of disengagement from and/or disinterest in their relative's life. The relationship between guilt, relative's functioning level, and quantity of visiting presents an 88 interesting picture. It was hypothesized and shown that high guilt families would visit less often to totally confused patients than low guilt families would; this reflects the feeling that visits to very impaired relatives may be too painful for a family feeling a lot of guilt. It was also shown that high guilt families visit less often to totally alert patients; this is probably a result of the fact that most families of alert patients who feel much guilt have their guilt magnified by the patient's reaction, which is most often anger. Thus, visits may be more threatening when the relative is alert and able to express this anger. Finally, with patients who are sometimes alert, sometimes confused, high guilt families actually visited more. For these families, guilt is probably a motivating factor in visiting, with the underlying hOpe that more visits will create improvement in their relative and relieve their guilt (or the corollary fear, that not visiting creates the confusion, and thus they will feel more guilty). This interaction between guilt and impairment on quantity of visiting has several implications which relate to the family programs discussed above. First, the fact that higher guilt relates to more visiting for a middle impairment level is encouraging, as it at least reveals that these families are still involved and available for intervention. The task with these families 89 is to train them to communicate effectively with their relative in order to facilitate his periods of lucidity, and, on the other hand, to use prOper methods (e.g., reality orientation) to work with him in confused periods. It is unfortunate, however, that guilt does not have the same effect on families of highly impaired patients, as these patients are also in great need of visiting. Here, as mentioned before, families must get support from staff in the form of explanations of behavior, guides to work- ing with this behavior, assistance in better visiting, etc. For the high guilt families who may visit less to alert residents for fear of confrontation with anger, the preferred intervention may be some sort of family therapy or family counseling. The relative must learn to accept the placement and try to maximize his function- ing; the family must become able to allow the relative to express his anger and concerns, and to not always interpret these feelings as a direct or guilt-inducing attack (Brody & Spark, 1966). Unfortunately, inter- vention with this group is least likely to succeed for two reasons: resources are rarely available for this sort of family therapy; and, if they were, this pattern of gui1t-anger-recrimination is most likely a long- standing problem (of possibly 30-50 years duration) and one not likely to be amenable to any therapy in 90 such a time of duress as nursing home placement with chronic illness (Howells, 1975). Cluster Analysis Seven separate clusters were identified on the preset key cluster analysis. The first cluster, labelled "Visiting practices" included variables describing how often families visited, how much they enjoyed visits, and what they did on visits. This cluster points to the fact that families who find things "to do" on visits rather than just sit and talk tend to visit more and have higher quality visiting. The major implication of this is that any family program should probably have a component aimed at teaching the families to visit better; this should be true whether one speaks of family educational programs, group meetings, or even family therapy. Cluster 2 is the "support" cluster. It indicates that families who get one type of support tend to get others as well. Thus, it seems that there are "high support“ families, and "no support" families; family programs must especially try to identify and meet the needs of this latter type. Clusters 3 and 6, with an intercorrelation of .60, can both be called "Impaired Mental Functioning." These verify the observation that mental deterioration 91 in the elderly is a broad and most often nonspecific process. The inclusion in these clusters of variables rated by both the family and the staff indicates that these two groups have similar perceptions along this line. Also, the two variables describing family problems in relating to this mental impairment were included in these clusters; not only do the relatives have mental problems, but the families perceive these as their major problem in relating to the older person. Once again, this provides evidence that any family programming must be primarily aimed at families of mentally impaired patients. Cluster 4, "Physical Impairment," essentially describes the "traditional" nursing home patient: one who has a multiplicity of physical problems, is non- ambulatory, and has few social or emotional problems. The families of these patients had less time or choice during the placement process; interventions with this type of patient's family should be either centered on a nursing home placement bureau, as described above, or in the immediate period after placement. Alternatives to nursing home institutionalization are probably not appropriate for this group. Cluster 5 describes the "Emotionally Troubled Patient" as distinguished from those patients with mental impairment largely the result of organic conditions. 92 Patients in this group tend to be both more depressed and more hostile, and this can create a whole different set of problems for the family. It may be for this group and their families that some sort of family therapy, group or individual, would be most appropriate. Cluster 7, "Pre-Placement History," is an inter- nally consistent set of variables describing the patient's living situation and the family's involvement in his life before placement. Patients who lived with a relative or with another person tended to get help from their families in both personal care and housekeeping-mainte- nance type of activities. Those who lived along received less help on all dimensions and in addition tried fewer alternatives. The implication of this is that the families of older persons living alone are less involved in their relative's life before placement and thus may be less available for intervention later on. Any family program must attempt to pull these people back into involvement or identify and work with the causes of the separation. Obviously not all families are amenable to productive involvement with their relatives; many relationships may have deteriorated years ago to a point beyond redemption. Nevertheless, the crisis of institutionalization may represent an opportunity for reconciliation which can be approached through family therapy or group programs. 93 In summary, the cluster analysis is most sig- nificant in its revelation of the distinction between patients with physical, mental, and emotional problems. Because of these three tight groupings, it is important to plan separately for each type of patient/family within the common framework of increasing productive family involvement. Also, the cluster structure reveals a common grouping of visiting variables, of family support variables, and of pre-placement history variables. Each of these areas is conceptually relevant in planning for the three types of patient groups. In addition, a review of the cluster structure and inter-cluster correlation matrix reveals that the problem being assessed in this study is extremely complex and multi-dimensional. Whereas previous studies (Lawton, 1972; Shanas, 1960) have postulated the high inter- relationship between physical and mental impairment in the elderly, the cluster analysis presented these clusters as relatively independent. It is possible that families choose to see their relative's problems as existing along only one of these dimensions, or that the variety of variables grouping together in these clusters are able to explain only a small part of the variance. This latter View may be supported by the fact that some important variables such as family guilt failed to fall into any of the clusters; obviously these are variables which may 94 relate to many different concepts and may only have a small part of their variance explained by any single relationship. The same statement applies to enjoyment of visiting as well; while this crucial variable tends to relate significantly with impairment of the patient, this is indeed a rather small negative correlation and many other small correlations make up the major part of the variance. In conclusion, thus, one of the major results revealed by the cluster analysis is the com- plexity and variability of the problem of family involve- ment; future researchers would do well to bear this in mind as they plan programs for families of nursing home patients. Summary The major findings and recommendations of this study can be summarized as follows: 1. .Alternatives to nursing home placement, when they do exist, are both under-recognized and under- utilized by families. In addition, the nursing home choice process is one characterized by a minimum of systematic decision-making based on critical choices. Thus, it has been recommended that the appropriate community agencies improve or establish nursing home information and referral services. 95 2. Family involvement, as reflected in quantity of visits, remains high even with severely impaired patients. The quality of these visits, however, decreases directly with greater mental impairment of the patient. Thus, programs must be initiated in nursing homes to train families to visit more productively and to become more active treatment resources for their elderly relative. 3. Families feel very little support in dealing with their relative's physical and emotional problems from the physician. More families tend to turn to nurses or even nurses' aides in the home for this support. Thus, any programs for families should take advantage of this established linkage with nursing home staff as a valuable resource in both coordination and treatment. 4. Cluster analysis results highlight the diffi- culties of families of mentally impaired patients and lend emphasis to the need for intervention with these families. 5. Guilt is often a motivating factor in visit- ing for families of patients who are at a middle impair- ment level. Also, families who feel more guilty tend to express more need and willingness to take part in programs in the home. APPENDICES APPENDIX A LETTER OF INTRODUCTION TO FAMILIES Appendix A 1201 WEST OAKLAND LANSING. MICHIGAN 4B9I5 TELEPHONE AREA com: 517,372-7900 [“i’Z' 0‘ Vt . [jigfi/ é' , . HOSPITAL .. COMMUNITY MENTAL HEALTH CENTER The Nursing Home Training and Consultation Project has been involved with the three Lansing area Provincial Houses for the past year in an effort to train staff in improving psychosocial aspects of care. In this respect we are vitally interested in the concerns of families and relatives of nursing home residents. In order to better understand the factors which concern families of pa- tients and to better plan programs for both patients and their relatives, we have initiated an area-wide survey. Your name has been chosen from a list given to us by Provincial House, and we hope that you will consent to he p us in this survey. The survey will take about a half-hour of your time and will be conducted at your convenience. Of course, all aspects of this interview will be kept confidential. Mrs. Carole Howland, of the Nursing Home Project, will be telephoning you shortly to set up a time for her to come and meet with you. If you do not wish to be contacted, or have any questions regarding this survey, please call me at 372-7900. extension 236. Thank you very much for your cooperation. I am confident that you will find this an enjoyable and interesting experience, and that we will be able to better benefit all patients in nursing homes from the information you provide us. Sincerely, Jonathan L. York Project Director Nursing Home Training and Consultation Project JY/th 96 APPENDIX B BEHAVIOR OF OLDER PERSON'S CHECKLIST (BOP) APPENDIX B BEHAVIOR OF OLDER PERSON'S Resident's Name CHECKLIST Rated by Facility Date 1. Cries Never Sometimes Often 2. Shows no interest in activities around him. Never Sometimes Often 3. Sits, unless directed into activity Never Sometimes Often 4. Gets angry or annoyed easily Never Sometimes Often 5. Hears things that are not there Never Sometimes Often 6., Does not try to be friendly with others Never Sometimes Often 7. Becomes easily upset if something doesn't suit him Never Sometimes Often 8. Refuses to do the ordinary things expected of him Never Sometimes Often 9. Is irritable and grouchy Never Sometimes Often 10. Refuses to speak Never Sometimes Often ll. Does not laugh or smile at funny comments or events Never Sometimes Often 12. Doesn't start up conversations with others Never Sometimes Often 13. Says he feels blue or depressed Never Sometimes Often 14. Sees things that are not there Never Sometimes Often 97 l5. l6. l7. l8. I9. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30. 31. 98 Has to be reminded what to do Sleeps, unless directed into activity Doesn't maintain conversations others start with him Says that he is no good Has difficulty completing even simple tasks on his own Talks, mutters, or mumbles to himself Giggles or smiles to himself without any apparent reason Doesn't keep himself clean Does not dress or feed self though physically able Lies to staff and residents Steals or "pack rats" Uses profanities Verbally threatens staff or residents 15 physically destructive (e.g. breaks furniture) Is physically assaultive to staff or other residents Expresses fear or nervousness Demonstrates rapid shift of emotions without control Never Never Never Never Never Never Never Never Never Never Never Never Never Never Never Never Never Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Often Often Often Often Often Often Often Often Often Often Often Often Often Often Often Often Often 32. 33. 34. 35. 36. 37. 38. 39. 40. 41. 42. 43. 99 Expresses thoughts of killing self Fears specific object or situation (phobias) Expresses unwarranted concern for physical health Is incontinent despite physical ability Misidentifies others Does not recall events of the last few hours or day Does not recall events of several years ago Is disoriented as to time and place Shows lapses in judgment (e.g. may harm himself if left alone by forgetting to blow out match when lighting cigarette, by taking scalding shower etc. -not intentional harm) Talks unrealistically about plans for future (e.g. plans to go live alone when physically impossible) Falsely believes that people are out to get him, attacking, cheating, or perse- cuting him Has beliefs about his personal life which are not true (e.g. thinks he is President etc. Never Never Never Never Never Never Never Never Never Never Never Never Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Sometimes Often Often Often Often Often Often Often Often Often Often Often Often APPENDIX C PHYSICAL CAPABILITIES CHECKLIST (PCC) APPENDIX C PHYSICAL CAPABILITIES EHfiLIST ~ - Resident's Name X Rated by Facility Date A. TOILET l. Cares for self at toilet completely, no incontinence Needs to be reminded or needs help in cleaning self, or has rare (weekly at most) accidents Soiling or wetting while asleep more than once a week Soiling or wetting while awake more than once a week No control of bowels or bladder Eats without assistance Easts with minor assistance, but is tidy and clean Eats with minor assistance and is untidy, needing help cleaning up Requires extensive assistance for all meals Does not feed self at all and is uncooperative with others feeding him C. DRESSING Dresses, undresses and selects own clothes-needs no assistance Needs minor assistance sometimes, but for most part can dress and undress self Needs some moderate assistance always in dressing and undressing Needs major assistance, but cooperates with efforts of others to help Completely unable to dress self and resists efforts of others to help D. GROOMING (neatness, hair, face, hands, nails, etc.) 1. 2. Always acceptably groomed without assistance Needs minor assistance in grooming, and occasional reminders 100 101. 3. Needs regular supervision or assistance in grooming 4. Needs total grooming care, but remains interested in staying well- groomed 5. Needs total grooming care, but is not interested in maintaining grooming; sometimes resists and negates efforts of others E. BATHING l. Bathes self without help 2. Bathes self with help getting in and out of tub or shower 3. Bathes self with lettle assistance. but needs to be reminded and forced to bathe 4. Needs to be bathed by others, but cooperates 5. Needs to be bathed by others, but resists and refuses to cooperate F. AMBULATION Walks unassisted usually 2. Walks with only arm or railing or cane for support, usually; or walks with walker 3. Moves self around in wheelcahir, can get in and out alone 4. Moves self around wheelchair, must be lifted in and out 5. Must be pushed around in wheelchair G. ACTIVITY 1. Gets out of bed and dressed in morning, remains out until bedtime with one nap, at most, during day 2. Gets out of bed in morning, but naps off and on through day 3. Gets up only when forced, then spends most of day out of bed 4. Spends whole day in bed, could be out more often 5. Spends whole day in bed, too sick to get out H. EYESIGHT ____J. Normal or better 2. Slightly impaired; can read, but for limited time periods 102 3. Somewhat impaired; can read large print, see movies, etc. 4. Considerably impaired; umable to see to read, but can distinguish faces etc. 5. Functionally blind I HEARING 1. Normal or better 2. Slightly impaired; occasionally asks "what", etc. 3. Somewhat impaired; hears about half of what is said to him, does not hear others conversations well 4." Considerably impaired; has great difficulty hearing _____ Functionally deaf J. SPEECH (quality of speech, not content or meaning) Normal or better Slightly impaired; at times garbled Somewhat impaired; one must concentrate hard to understand Considerably impaired; one can only pick out occasional words ; or person speaks in fragments, only expressing needs, etc. Mute; or totally imcomprehensible St. Lawrence Hospital CMHC APPENDIX D FAMILY INTERVIEW SCHEDULE Appendix D St. Lawrence Hospital Communit . y Mental Health Center Nur51ng Home Consultation and Training Project FAMILY SURVEY Name of Interviewee Date of Interview Place of Interiew Comments of Interviewer: 103 O 04 O St. Lawrence HospitaI Community Mental Health Center Nursing Home Consultation and Training Project FAMILY SURVEY have? HON OFTEN DO THEY VISIT PT? 1. What relation are you to 2. What other close relatives does DO THEY LIVE IN Hflfli. RELATION TO PATIENT LANSING AREA l. 2. 3. 4. 5. 6. 7. 8. 9. 10. was in? 3. Is this the first nursing home a) If no, where else was he (she)? b) Why was he moved to this one? _ a) b) .c) d) e) f) 9) h) i) J) k) I) 105 Before moved to the first nursing home, was he (she) in a hospital?— a) If yes, for how long? In the two years before moved to a nursing home, in which of the following places did he (sh?) live? Please check (v’) all that apply and then note the length of time lived there. Then, please go back over the list and place a "l" in the column beside the last place he lived before moving to a nursing home, and a "2" beside the second-to-last, etc., until all are in order. PLACE OF LIVING LENGTH THERE ORDER LIVED IN . (l= closest to present time) in own home, alone in own home, w/another in own apartment, alone in own apartment, w/another in senior citizen's apartment in your home or apartment in home or apartment of another relative in home for the aged or retirement center in a State Hospital other, please name other, please name other, please name 106 In this period before moved to a nursing home, with which of the following activities did you have to help him/her? (Place a check beside all appropriate activities.) HELPED WITH HOW OFTEN/WEEK bathing ' dressing toileting feeding light chores heavy house-cleaning laundry shopping cooking medical affairs transferring other 107 Many types of problems may have happened to your relative in the six months before he entered a nursing home for the first time. -Please place a check (v’) in the first column for all those problems which actually gig occur to in those six months. -Please place a check (yr? in the second column for all those problems which you feel were crucial in leading to the decision to place in a nursing home. LED TO DECISION TO PROBLEM LIST ACTUALLY OCCURRED PLACE IN NURSING HOME death of spouse loss of ability to drive loss of ability to walk loss of use of limb(s) severe impairment of eyesight severe impairment of hearing severe impairment of speech loss of continence loss of orientation to time loss of orientation to place started misidentifying others loss of memory ran out of money severe physical illness stroke heart attack broken hip or leg became depressed became grouchy became violent hallucinated became delusional other other 108 8. Following is a list of some alternatives which may or may not be appropriate to use instead of nursing home. -Place a check (v’) in the first column if you have heard of this alternative? -Place a check (yf) in the second column if you tried this with your relative. NAME HEARD 0F TRIED COMMENT *— Home health aide Adult Day Care Services Physical therapy Visiting Nurses Housekeeping Aides Meals-onwheels Transportation Services (GLATCH) Health Clinics Community Mental Health Center Other (Please Name) 9. Below you will see a list of people or organizations who may have been helpful or influential in you decision to move to a nursing home? Please indicate whether their input to this decision process was: NONE OF SOME IMPORTANCE VERY IMPORTANT the atient himself 0 er am rs ur c e ur e n S C an en S SOC S C an a W0 er n S- a s a rs ng trator ano er rs ng s ff member r e 5 am y s o ano er tient r, p ease name O I l0. Who made the ultimate decision to place in a Nursing Home? ***** 109 ll. How many nursing homes did you visit before choosing? l2. How many times did you visit the one you chose? 13. Did visit with you? l4. How much did the following factors influence your choice of ? NO INFLUENCE SOME INFUENCE MUCH INFLUENCE location of home ava a 0 cos ua o s a 0 ca care C ean HESS U6 0 ac V ro ram CO on O 0 er res en S 0 er 15. How did your relative accept the decision for him to go into a nursing home? 16. How often do you visit ? a). How much would you say you visit compared to when first went into a nursing home? more less same 110 17. Following are some statements which amy or may not apply to you. circle the appropriate letters as to whether you SA = strongly agree A = agree ? = no opinion D = disagree SD = strongly disagree a). I often visit my relative even though SA A ? I don't really want to. b). I feel guilty when I think of my SA A relative in a nursing home. c). I often feel that maybe I should SA A not have put my relative in a nursing home. d). I am often ashamed to tell people SA A that my relative is in a nursing home. e). If I had it to do over again, I SA A would try more alternatives before a nursing home. Please SO SO SO SO SO lll l8. What do you usually do when you visit? l9. Would you say that any of these things happen with when you visit? -Place a check ( ) in the appropriate column NEVER OR RARELY SOMETIMES OFTEN is grouch and irritable seemsidepressed" does not recognize you seems disorientedi complaifis aBout nquing home complains about illness complains about life in general ,; 20. Do you enjoy your visits? (Check one) 90-lOD% of the time 65-90% of the time 35-65% of the time lO—35% of the time 0-lO% of the time 21. Please place a check mark ( ) in the appropriate column to indicate how helpful the following people have been in helping you understand your relative's physical concerns since he (she) entered a nursing home? NO HELP SOMEHHAT HELPFUL VERY HELPFUL tient's sician nurs ome a n s a r nurse 5 nurse a e s O C e ll SOC a WOY‘ Y‘ O l‘ ease name 112 22. Please place a check in the appropriate column to indicate how helpful the following people have been in helping you understand your relative's emotional problems since he (she) entered a nusrsing home? NO HELP SOMEWHAT HELPFUL VERY HELPFUL tient's h ician nurs ome a n s ra r nurse 5 nurse a 5 am 0 0 er C e n SOC a WOY‘ er 0 El“ 23. Do you ever take out of the nursing home? (a) if yes, how often? 24. Before first entered a nursing home how often did you: (a) speak with him (her) on the telephone? (b) visit with him (her)? 25. Since first moved to a nursing home, has the daily routineTin your household been: (check one) more stable less stable the same 26.Has your family talked about and been concerned with ,gproblems more less the same 27. b) C) d) f) g) 11.3 The families of other patients in nursing homes have mentioned several Please mark in the appropriate column below whether each of these potential problems has types of problems which have occurred to them. been: getting information about patient's physical con- dition understanding his mental state understanding his emotional state nursing home rules make visiting difficult we feel guilty about having placed patient in nursing home. can't communicate with him (her) on visits patient is angry with us because of placement in nursing home. NO PROBLEM SOMEWHAT OF A PROBLEM A BIG PROBLEM One of our major concermsin doing this interview is to get information which may aid in developing better services for patients and their relatives. Your answers to the following few questions would be most helpful to us in this pursuit. 28. 29. Has there been any aspect of your relative's illness or life in the nursing home for which you have been able to get no help in understanding? What has been the most difficult aspect of your relative's aging process for you to cope with. *‘k*** 30. b) C) d) e) f) 9) h) 3T. 32. 33. 114 Below are listed some possible programs for families of patients in nursing homes. Which of the following services did you use, would have used when your relative entered the nursing home, or would still use now. Please check the most appropriate. USED BEFORE OR USE NOW meet with nursing home staff to discuss relative's emot- ional and physical adjust- ment to the home. meet with families of other patients to share concerns and problems talk over problems with counselor talk over problems with counselor and relative meet with someone who could explain alternatives to nursing home placement attend several informal classes concerning the psychological and social aspects of aging and nursing homes. get advice on how to improve your visiting to make relative happier. other What was your relative's occupation? What was his (her) highest level of education? How many children did he (she) have? WOULD HAVE WOULD UTILIZED AT UTILIZE ADMISSION NOW 34. 35. 36. 37. 38. 39. 40. 115 Was he(she) ever a heavy drinker? Was he(she) ever under psychiatric care? What is your marital status? What is your occupation? What is your level of education? What is your spouse's occupation? What is your spouse's level of education? If yes, please explain. 116 OTHER PATIENT DATA (FROM MEDICAL CHART) 42. 43. 44. 45. 46. Method of payment at present Method of payment at admission Length of time at this home Age Marital status APPENDIX E SCORING KEY FOR FAMILY INTERVIEW APPENDIX E Column Variable Code 1 Place of Interview 1 8 home PLACEINT 2 8.St Lawrence 3 8 office 4 8 other Blank 8 missing (9) 2 Relation of Interviewee 3 8 spouse RELATINT 2 8 child, brother, sister I 8 other Blank 8 missing (9) 3 Other Relatives in Area 3 8 spouse RELATLAN 2 8 child, sibling l 8 other 0 8 none Blank 8 missing (9) 4 Other Relatives Not in Area 3 8 spouse or less RELATDUT 2 8 child, sibling, or less l 8 other 0 8 none Blank 8 missing (9) 5-6 Visits by Other Relatives visits total/month VISITREL BTEhk 8 missing (99) 7 Is This the First Nursing Home? O 8 no FIRSTNH l 8 yes Blank 8 missing (9) 8-9 How Long In Hospital # weeks HOSPITWK Tfige 4 wks 8 l month) Blank 8 missing (99) lO-ll Last Place of Living in own home, alone PLACLAST I. 2 8 in own home, w/another 3 8 in own apartment, alone 4 8 in own apartment, w/another 5 8 in senior citizen's apartment 6 8 in your home or apartment 7 8 in home or apartment of another relative 8 8 in home for the aged or retire- ment center 9 8 in a state hospital 10 8 other Blank 8 missing (99) 117 118 CODING SHEET - FAMILY INTERVIEW Column lZ-l3 l4-lS l6 l7 TB 19 20 2l 22 23 24 25 26 27 Variable 2nd to Last Place of Living PLACLASZ 3rd to Last Place of Living PLACLASB ‘ Was Moving in With Relative Last Place? RELALAST Helped with Bathing BATHHELP Helped with Dressing DRESSHELP Helped with Toileting TOILHELP Helped with Feeding FEEDHELP Helped with Light Chores LITEHELP Helped with Heavy House Cleaning HOUSHELP Helped with Laundry LAUNHELP Helped with Shopping SHOPHELP Helped with Cooking COOKHELP Helped with Medical Affairs MEDHELP Helped with Transferring TRANHELP HOH OFTEN HELPED WITH 28 29 Bathing NUMBATH Dressing NUMDRESS Code use same codes as cols lD-ll use same codes as cols lO-ll 0 8 no l 8 yes Blank 8 missing (9) D 8 no l 8 yes times/wk 119 CODING SHEET - FAMILY INTERVIEH Column 3O 31 32 33 34 35 36 37 38 39 4o 4T 42 43 44 45 46 47 49 Variable Toileting NUMTOIL Feeding NUMFEED Light Chores NUMLITE Heavy House Cleaning NUMHDUS Laundry NUMLAUN Shopping NUMSHOP Cooking NUMCOOK Medical Affairs NUMMED Transferring NUMTRAN DID THESE OCCUR: Death of Spouse Pl Loss of Ability to Drive P2 Loss of Ability to Walk P3 Loss of Use of Limb(s) P4 Severe Impairment of Eyesight P5 Severe Impairment of Hearing P6 Severe Impairment of Speech P7 Loss of Continence P8 Loss of Orientation to Time P9 Loss of Orientation to Place PlO Started Misidentifying Others Pll Code ___times/wk (l 8 l time/week or less) 0 8 no 1 8 yes 120 CODING SHEET - FAMILY INTERVIEW gglgmg_ Variable 50 Loss of Memory P12 51 Ran Out of Money 52 Severe Physical Illness P14 53 Stroke P15 54 Heart Attack P16 55 Broken Hip or Leg P17 56 Became Depressed P18 57 Became Grouchy P19 58 . Became Violent P20 59 Hallucinated P21 60 Became Delusional P22 61 Alcoholism P23 62 Social P24 63 Mental P25 DID THESE LEAD TO PLACEMENT: 64 Death of Spouse PPl 65 ' Loss of Ability to Drive PP2 66 Loss of Ability to Walk PP3 67 Loss of Use of Limb(s) PP4 68 Severe Impairment of Eyesight PPS 69 Severe Impairment of Hearing PP6 70 Severe Impairment of Speech PP7 71 Loss of Continence PP8 72 Loss of Orientation to Time PP9 73 Loss of Orientation to Place PPlO Code 0 8 no 1 8 yes 0 8 no 1 8 yes 121 CODING SHEET - FAMILY INTERVIEW gglg!g_ Variable ngg_ 74 Started Misidentifying Others PPll O 8 no I 8 yes 75 Loss of Memory PPlZ “ 76-78 ID# 80 Card # 8 l 122 CODING SHEET - FAMILY INTERVIEW Column dd-‘d (AN-'0 14 15 16 17 18 19 20 mammoth-um Variable DID THESE LEAD TO PLACEMENT (cont): Ran our of Money PP13 Severe Physical Illness PPl4 Stroke PPlS Heart Attack PP16 Broken Hip or Leg PPl7 Became Depressed PP18 Became Grouchy PP19 Became Violent PP20 Hallucinated PPZl Became Delusional PP22 Alcoholism PP23 Social PP24 Mental PP25 HAVE YOU HEARD OF: Home Health Aide HEALAID Adult Day Care Services DAYCARE Physical Therapy PHYTHER Visiting Nurses VNA Housekeeping Aides HOUSAID Meals on Wheels MOW Transportation Services (GLATCH) GLATCH Code 0 8 no 1 8 yes 123 CODING SHEET - FAMILY INTERVIEW Column Variable 21 Health Clinics PUBHEAL 22 Comunity Mental Health Center CMHC HAVE YOU TRIED: 23 Home Health Aide HEALAIDT 24 Adult Day Care Services DAYCARET 25 Physical Therapy PHYTHERT 26 Visiting Nurses ' VNAT 27 Housekeeping Aides HOUSAIDT 28 Meals on Wheels MONT 29 Transportation Services (GLATCH) GLATCHT 30 Health Clinics PUBHEALT 31 Community Mental Health Center CMHCT IMPORTANCE OF IN DECISION: 32 Patient PATIMPOR 33 Other Family FAMIMPOR 34 Clergyman CLERIMPOR 35 Physician MDIMPOR Code 0 8 no 1 8 yes 0 8 no 1 8 yes 0 8 none 1 8 some 2 8 much same as col 32 124 CODING SHEET - FAMILY INTERVIEW Column 36 37 38 39 40 41 42-43 44-45 46 47 48 49 SO 51 Variable Hospital Social Worker MSWIMPOR Nursing Home Administration ADMIMPDR Nursing Home Staff Member STAFIMPO Friends FRIMPOR Family of Another Patient PTFAIMPO Who Made Ultimate Decision? ULTDECI How Many Homes Visited? HOMVISIT How Many Visits to Home Chosen? VISITCHO Did visit with you? VISITWI INFLUENCE OF FOLLOWING FACTORS: Location LOCAT Availability AVAIL Staff Quality STAFQUAL Quality of Physical Care PHYSQUAL Cleanliness CLEAN 9.9.4.9. O 8 none 1 8 some 2 8 much 1 8 interviewee 2 8 another relative 3 8 patient 4 8 other Blank 8 missing (9) # BTEnk 8 missing (99) # BTink 8 missing (99) 0 8 no l 8 yes 0 8 none 1 8 some 2 8 much Blank 8 missing (9) same as col 47 same as 47 125 CODING SHEET - FAMILY INTERVIEW Column Variable Code 52 Quality of Activity Program 0 8 none ACTIQUAL l 8 some 2 8 much Blanks 8 missing (9) 53 Condition of Other Residents " CONDIT 54 Cost “ 55-56 How Often do you Visit? ___f per month 3 I OFTVISI (use 4 wks 8 1 month) , Blank 8 missing (99) 57 Visiting Compared to at First 0 8 less E COMPVIS l 8 same . _ 2 8 more II 58 Visit Though Don't Want to 5 8 SA GUILTl . 4 8 A 3 8 ? 2 8 D , l 8 SD , Blank 8 missing (9) 59 Think of Relative in Home same as col 58 GUILTZ 60 Should Not Have Put in Home “ GUILT3 61 Ashamed to Tell “ , GUILT4 62 Try More Alternatives " GUILTS DO ANY OF THESE HAPPEN: 63 Is Grouchy and Irritable O 8 never GROUCH l 8 sometimes 2 8 often Blank 8 missing (9) 64 Seems Depressed same as col 63 DEPRESS 65 Does Not Recognize you same as cal 63 NOTRECOG 126 CODING SHEET - FAMILY INTERVIEW Column 66 67 68 69 7O 71 72 73 74 75 76-78 80 Variable Seems Disoriented DISORI Complains About Nursing Home COMPNH Complains About Illness COMPILL Complains about Life COMPLIFE Do You Enjoy Your Visits ENJVIS HELPFUL W/PHYSICAL PROBLEMS: Patient's Physicain HPMD Nursing Home Administrator HPADMIN Nurse HPRN Nurse Aide HPNA Family of Other Patients HPFAMS Patient ID # Card # 8 2 Code 0 8 never 1 8 sometimes 2 8 often Blank 8 missing (9) 5 8 90 - 100% 4 8 65 - 90% 3 8 35 - 65% 2 8 10 - 35% 1 8 O - 10% Blank 8 missing (9) O 8 none l 8 some 2 8 much same as 71 same as 71 127 CODING SHEET - FAMILY INTERVIEH Column 10-11 12-13 14-15 16 Variable HELPFUL N/PHYSICAL PROBLEMS (cont) Clergyman HPCLERGY Social Worker HPMSW HELPFUL N/EMOTIONAL PROBLEMS Patient's Physician HEMD Nursing Home Administrator HEAOMIN Nurse HERN Nurse's Aide HENA Family of Other Patient HEFAMS Clergyman HECLERGY Social Worker HEMSW Do You Ever Take Patient Out? PTOUT How Often Speak Nith On Phone? PHONE How Often Visit Befbre? VISITBEF Routine In Household ROUTINE Code 0 8 none 1 8 some 2 8 much same as col 1 O 8 none 1 8 some 2 8 much same as col 3 _____f times per year (use 12 mos 8 1 year 4 wks - 1 mo) Blank 8 missing (99) ___§/month (use 4 wks 8 1 mo.) Blank 8 missing (99) ___f/month (use 4 wks 8 1 mo) Blank 8 missing (99) D 8 less stable 1 8 same 2 8 more stable Blank 8 missing (9) 128 CODING SHEET - FAMILY INTERVIEW Column Variable l7 Concern W/Problems CONCERN ARE ANY OF THESE PROBLEMS: 18 Getting Information GETINFO 19 Understanding Mental State UNMENTAL 20 Understand Emotional State UNEMOT 2l -' Rules Make Visiting Difficult RULESVIS 22 Feel Guilty FEELGUIL 23 Can't Communicate NOCOMMUN 24 Patient is Angry PTANGRY USED BEFORE OR NOW: 25 Meet W/Nursing Home Staff PROGlBEF 26 Meet W/Families PROGZBEF 27 Talk W/Counselor PROGSBEF 28 Talk W/Counselor a Patient PROG4BEF 29 Get Alternatives PROGSBEF 3O Attend Classes PROGGBEF 31 Get Advice on Visiting PROG7BEF Code 0 8 less 1 8 same 2 8 more 0 8 no problem 1 8 somewhat 2 8 big problem Blank 8 missing (9) same as col 18 O 8 no 1 8 yes same as col 25 129 CODING SHEET - FAMILY INTERVIEW Column 32 33 34 35 36 37 38 39 40 41-42 43 44 45 Variable WOULD UTILIZE AT ADMISSION OR NOW: Meet Hith Staff PROGlHLD Meet H/Families PROGZNLD Talk W/Counselor PROGBWLD Talk W/Counselor and Patient PRDG4WLD Get Alternatives PROGSWLD Attend Classes PROGGWLD Get Advice on Visiting PROG7WLD Relative's Occupation RELOCCUP Relative's Education RELEDUC How Many Children NOCHILD Heavy Drinker? DRINK Psychiatric Care PSYCH Respondent's Marital Status RESMARIT cede. O 8 no 1 8 yes same as 32 use attached categories. Blank 8 missing (9) 8 8 housewife l 8 graduate. professional 2 8 standard college grad 3 8 partial college 4 8 high school grads 5 8 partial high school 6 8 junior high school (7th-9th) 7 8 less than 7 years of school' Blank 8 missing (9) # BTihk 8 missing (99) O 8 no 1 8 yes 0 8 no 1 8 yes 1 8 married 2 8 widowed 3 8 divorced 4 8 separated 5 8 single Blank 8 missing (9) 130 CODING SHEET - FAMILY INTERVIEN Column Variable 46 Respondent's Occupation RESOCCUP 47 Respondent's Education RESEDUC 48 Spouse's Occupation SPOOCCUP 49 ' . Spouse's Education SPOEDUC 50 Confusion P26 51 Nutrition P27 52 Confusion PP26 53 Nutrition PP27 54 Reason for Move from lst N.H. REASMOVE 55 How Patient Accepted Move PTACCEPT Code ___yse attached categories 8 8 housewife Blank 8 missing (9) l 8 graduate, professional 2 8 standard college grad 3 8 partial college 4 8 high school grads 5 8 partial high school 6 8 junior high school (Jth-9th) 7 8 less than 7 years of school Blank 8 missing (9) ___use attached categories 8 8 housewife Blank 8 missing (9) l 8 graduate. professional 8 standard college grad 8 partial college high school grads 5 8 partial high school 6 8 junior high school (7th-9th) 7 8 less than 7 years of school Blank 8 missing (9) O 8 no l 8 yes #00“) O 8 no 1 8 yes 1 8 more care 2 8 location, opening 3 8 better care 4 8 other Blank 8 missing (9) 5 8 fully accept 4 8 resigned ok 3 8 unalert, no emotion 2 8 wanted to come home l 8 totally opposed Blank 8 missing (9) 131 CODING SHEET - FAMILY INTERVIEW Column Variable 56-57 58-59 60 61 76-78 80 What Do You Do On Visits-Primary DOVISITT What Do You Do on Visits -secondary DOVISITZ No Help In Understanding NOUNDER Most Difficult to Cope With DIFFCOPE ID! Card # 8 3 talk. play cards 8 read (books. mail) 03 8 watch TV 8 physical things - visits, walks rides be w/other pts also do things to - feed. clean, etc 07 8 take things 08 8 do things for - laundry O9 8 nothing - can't do Blank 8 missing (99) 05 8 same as cols 56-57 1 8 physical 2 8 poor communication 3 8 dissatisfied 4 8 more therapy/activity 5 8 patient's mental state 6 8 other ' Blank 8 missing (9) 7 s MON! 1 8 mental (confusion, depress) 2 8 physical 3 8 personality 4 8 dependency 5 8 coping w/death 6 8 other Blank 8 missing (9) 78700”! APPENDIX F EMPIRICAL V-ANALYSIS KEY CLUSTER STRUCTURE APPENDIX F EMPIRICAL V-ANALYSIS KEY CLUSTER STRUCTURE Variables 333533 Loading Cluster 1 Do verbal things on visits (D) .9457 Do active things on visits (D) -.9392 Emotional support from MD -.4116 Physical support from MD -.3148 Total number of visits -.3075 Cluster 2 Self-care disability (D) .8594 Messiness (D) .8335 Impairment of sensorium (D) .7827 Lack of interaction (D) .7318 Sensory impairment .4593 Impairment of ambulation .4150 Lower activity level .4003 More psychotic behaviors .3916 Family takes patient out less .3203 Cluster 3 Placed because of physical problems (D) .8724 Had more physical problems at admission (D) .8016 Placed because of social problems -.6375 Had more social problems at admission (D) -.5028 In hospital longer before admission .4166 Had more emotional problems at admission -.3728 Male .3609 Placed because of emotional problems -.3115 Cluster 4 Chose home because of cleanliness (D) .8503 Chose home because of condition of other residents (D) .7181 Visited home more before choosing (D) .6812 Family more willing to take part in programs no .4012 Visited more homes before choosing .3931 Enjoy visits with relative more -.3514 Chose home because of location .2681 132 133 Cluster 5 More verbally hostile (D) .8377 More depressed (D) .6277 Have more emotional problems on visits .4873 Receives more psychotropic drugs on PRN basis .4511 More physically hostile .3993 More sensory problems at admission -.2765 Cluster 6 More cognitive problems at admission (D) .8543 Placed because of cognitive problems (D) .7301 More orientation problems on visiting (D) .6777 Family has most difficulty coping with mental problems .5828 Family is more concerned now -.4l65 Lower activity level for pt. (D) -.3677 Patient is widowed .2719 First nursing home placement .2567 Cluster 7 Had more help from family in household tasks (D) .7653 Lived alone (D) -.6959 Lived with family last .5275 Had more help from family in personal care tasks .5248 Lived with someone else .4408 Routine of family more stable now .3743 Family tried more alternatives .3071 Cluster 8 Chose home because of staff quality (D) .8206 Chose home because of quality of physical care (D) .8161 Family aware of more alternatives .3457 Family gets emotional help from nursing home .3089 M.D. important in placement decision -.2492 Note: (D) denotes variables which are cluster definers. REFERENCES REFERENCES Andrews, F. M., & Withey, S. B. Developing measures of perceived life quality. Social Indicators Research, 1974, 1, 1-26. Baer, P., Morin, K., & Gaitz, C. Familial resources of elderly psychiatric patients. Archives of General Psychiatry, April 1970, 22, Bernstein, H. Patients, families, and nursing homes. 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