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The cognitively-impaired institutionalized elderly: spousal perceptions and expectations of nursing care Fong, Susan T. S. 1993

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THE COGNITIVELY-IMPAIRED INSTITUTIONALIZED ELDERLY:SPOUSAL PERCEPTIONS AND EXPECTATIONS OF NURSING CAREBYSUSAN TUEY SOO FONGB.S.N., The University of British Columbia, 1989A THESIS SUBMITTED IN PARTIAL FULFILMENT OFTHE REQUIREMENTS FOR THE DEGREE OFMASTER OF SCIENCE IN NURSINGinTHE FACULTY OF GRADUATE STUDIES(School of Nursing)We accept this thesis as conformingto the required standardTHE UNIVERSITY OF BRITISH COLUMBIAMay 1993© Susan Tuey Soo Fong, 1993In presenting this thesis in partial fulfilment of the requirements for an advanceddegree at the University of British Columbia, I agree that the Library shall make itfreely available for reference and study. I further agree that permission for extensivecopying of this thesis for scholarly purposes may be granted by the head of mydepartment or by his or her representatives. It is understood that copying orpublication of this thesis for financial gain shall not be allowed without my writtenpermission.Department of NURSING The University of British ColumbiaVancouver, CanadaDate aDE-6 (2/88)IIAbstractThis study was conducted to determine the relationship between the spouses'perceptions and expectations of nursing care delivered to their cognitively-impairedinstitutionalized elderly mate. Data were collected by means of a self-administeredquestionnaire, based on the concept of caring, designed to elicit spouses' perceptionsand expectations of certain identified nursing care activities. These nursing careactivities pertain to the Instrumental, Expressive, and Communicative components ofa Total Transactional System, the conceptual framework. Data were analyzed usingdescriptive and inferential statistics in the form of a central tendency analysis and amultivariate approach using profile analysis. Results demonstrated that there was adifference between the spouses' perceptions and expectations. There was astatistically significant difference between the spouses' perceptions and expectationsin that the perceptions were less than the expectations. Specifically, in the provisionof physical care, the spouses' perceptions were below their expectations. Inaddition, nursing staff did not consistently achieve the goal of meeting thecommunicative and emotional needs of residents as perceived by their spouses. Theconclusions support the need for nurses to consider improvements in nursing carethrough nursing research, specifically, in ascertaining the quality of care concept inthis context. Through education, the impact of cognitive impairment as a chronicillness on the elderly person and his/her family could be better understood. Throughpractice, an improvement in the manner of physical and psychological care deliverycould be realized. Finally, through administration, an examination of the structuressupporting the delivery of nursing care to the cognitively-impaired elderly could lendmotivation and assistance to the nurses responsible for care at the bedside.iiiTABLE OF CONTENTSAbstract ^List of Tables  vList of Figures  viAcknowledgements ^  viiDedication ^  viiCHAPTER ONE - IntroductionBackground to the Study ^  1Conceptual Framework  6Problem Statement  8Purpose of the Study ^  8Research Question  9Definition of Terms  9Assumptions ^  10Limitations  10Significance of the Study  11Scientific Significance ^  11Practical Significance  11Summary ^  12CHAPTER TWO - Literature ReviewOverview ^  14Trends in Population Aging and the Reasons forInstitutionalization ^  15The Spouse as Caregiver  19The Effects of Institutionalization ^  24Nursing Care of the Institutionalized Elderly ^  26Summary ^  35CHAPTER THREE - MethodResearch Design ^  37Setting and Sample  37The Questionnaire  38Validity and Reliability ^  40Human Subject Protection Process ^  41Data Collection Procedure  43Data Analysis ^  43Summary ^  46ivCHAPTER FOUR - Presentation and Discussion of FindingsOverview ^  47Demographic Information ^  47A Profile Analysis of the Differences Between Means of thePerceptions and Expectations ^  49Profile Analysis of the Subscales  59Accessible ^  59Explains and Facilitates ^  62Comforts  63Anticipates ^  65Trusting Relationship ^  67Monitors and Follows Through ^  70General Discussion of the Data Findings  72The Instrumental Transaction  72The Expressive Transaction ^  73The Communicative Transaction  74Summary ^  75CHAPTER FIVE - Summary, Conclusions, Implications andRecommendations for Future ResearchSummary ^  77Conclusions  81Implications  81Nursing Education ^  82Nursing Practice  83Nursing Administration  84Limitations of the Study ^  85Recommendations for Future Research ^  86References ^  89AppendicesA. Caring Assessment Questionnaire (Care-Q II)/Request for Demographic Information ^  97B. Letter of Information ^  109C. Instructions to Participants  110D. Aptness of the MANOVA Model ^  111E. Statements with Skewness Coefficients Greater Than Plus or MinusTwo Standard Deviations  113F. Statements with Kurtosis Coefficients Greater Than Plus or MinusThree Standard Deviations ^  113LIST OF TABLESTABLE1. Central Tendency Analysis ^  532. T Value Analysis for Each Statement ^  553. Test for Parallelism ^  574. Profile Analysis of the Subscales  585. Profile Analysis of Perceptions and Expectations ^  60VLIST OF FIGURESFIGURE1. Graphed Means of Perceptions and Expectations ^  512. Graphed Means of the Accessible Subscale  613. Graphed Means of the Explains and Facilitates Subscale ^ 624. Graphed Means of the Comforts Subscale ^  655. Graphed Means of the Anticipates Subscale  666. Graphed Means of the Trusting Relationship Subscale ^  687. Graphed Means of the Monitors and Follows Through Subscale ^ 71viVIIAcknowledgementsI acknowledge with gratitude the following persons whose assistance andsupport made the completion of this thesis possible. To my Chairperson, ProfessorMarilyn Dewis, thank you for introducing me to quantitative research. Your expertguidance, patience, and sensitivity have sustained me throughout this process. ToProfessor Raymond Thompson and Dr. Anna Marie Hughes, thank you for yourinsightful comments, encouragement, and editorial assistance. To Dr. Walter BoIdtand to Jeff Mitchell, thank you for making statistics a lasting interest. To thespouses who provided data for the study, I extend my deepest appreciation fortaking the time to complete the questionnaires. To my family, Kim and Jason, forbeing understanding of my needs and for being second place in my life for so long, Iam fortunate to have you.And at long last, I would like to dedicate this thesis to the nursing staff of theFirst Floor of the Purdy Pavilion, University Hospital, on the Campus of the Universityof British Columbia.1CHAPTER ONEIntroductionBackground to the StudyThe Canadian population is rapidly aging. In 1900, only 5% of Canadianswere over 65 years of age. This proportion has now more than doubled and by theyear 1995 those who will be 65 years or older will comprise 12% of the Canadianpopulation (Organizing Committee, Canadian Consensus Conference on theAssessment of Dementia, 1991). In particular, the so-called "old-old", those aged 85years or more, will increase at a disproportionately higher rate than the populationoverall (Pillay, personal communications, June 13, 1991). The greying of Canadianswill be accompanied, for some, by cognitive impairment. Since the incidence ofcognitive impairment increases with age, the absolute numbers of such cases willcontinue to rise well into the middle of the next century (Mortimer, Schuman &French, 1981). About 10% of those over 65 years and up to 40% of those over 85years suffer from cognitive impairment (Evans, Funkenstein, & Albert, 1989). Thus,there are now at least 250,000 Canadians with cognitive impairment and more than25,000 new cases annually (Organizing Committee, Canadian Consensus Conferenceon the Assessment of Dementia, 1991). Inevitably, a proportion of these elderlypersons are cognitively impaired to the extent that their families are unable to carefor them at home and they will require institutionalization.Cognitive impairment can be defined as the inability to process information(Rohs, 1986). With cognitive impairment, the elderly person is unable to storeinformation to the extent that it can be registered, retained over time, and recalled toconsciousness (Rohs, 1986). The experience of daily living depends on effectively2functioning cognitive processes. Consequently, the affected elderly person will beunable to communicate effectively, to be safely and independently mobile, to performactivities of daily living, to eat safely, to be continent, and to be emotionally stable(Harvis, 1990; Hutner Winograd & Jarvik, 1986; Minister of National Health andWelfare, 1984; Reisberg, 1986;). The many manifestations of cognitive impairmentchallenge optimal nursing care delivery. This challenge is further intensified in viewof the limited human and material resources available in long term care institutions.Since medical cure is not likely in the future for dennenting chronic illnesses, nurseswill need to continue to provide for their care needs (Vuori, 1987).Traditionally, care of the elderly has been perceived philosophically as basicnursing requiring low skill and low technical expertise. As a result, nursing care ofthe institutionalized elderly has been generally reduced to the delivery of the basicsof physical care such as washing, positioning, and assisting at meal times. Staffingpatterns in long term care facilities have long been reflective of such a philosophy,that is: the care of the elderly requires neither extensive training nor skills. This isthe only area of nursing service where "hands-on" nursing care is delivered primarilyby nonprofessional staff. As overseers of care, the disproportionately small numberof professional staff are responsible for all nursing care received by residents.As recipients of institutional nursing care they receive, residents haveperceptions and expectations of that care. Since physical and mental incapacities ofthe cognitively-impaired elderly render them inconsistent or even unable to expressjudgment on the quality of their nursing care delivery, the spouses who have been inthe position of caregiver are the ones appropriate to determine the perceptions andexpectations of institutional nursing care.Spouses may lack the scientific and technical knowledge and the generalawareness of institutional policy associated with the nursing care needs of theirinstitutionalized husbands or wives. This affects how accurately they evaluate allaspects of the quality of nursing care (Vuori, 1987). Spouses, nonetheless, havebeen shown to make some valid assessments of the nursing care received (Eriksen,1987; Petersen, 1989; Vuori, 1987).To a great extent, the spouses' definition of "care quality" may be linked totheir own caregiving activities prior to institutionalization and may be influenced bythe emotional burden associated with the decision to institutionalize. Further, theperception may also be influenced by factors important to their husband's or wife'sphysical and psychological comfort (Spitzer, 1988). Spouses may concur with thedemented elderly persons' expressed satisfaction with the nursing care received.Based on the researcher's clinical experience, satisfiers may include caregivers'attending to the resident's questions and concerns, returning to the resident aspromised instead of keeping him/her waiting for long periods, calling the resident byname and speaking with colleagues in English rather than in the caregiver's ownnative language, if other than English, in the resident's presence. Other favourableaspects of care may include speaking to the resident in an adult manner, respectinghis/her wishes, giving the resident choices, personalizing his/her care, answering callbells promptly, assisting the resident to be clean and well groomed, and anticipatinghis/her needs without being told. Thus, spouses as consumers value courtesy,technical quality, professional knowledge, communication of information, and theavailability of the nurse as indicators of good nursing care delivery (Vuori, 1987).Spouses may be the ultimate authorities on the criteria of good care in all34nontechnical matters (Vuori, 1987). To determine the quality of care without somenotion of the spouses' views and experiences is both impractical and unwise(Petersen, 1989).A perspective on the quality of care necessitates an examination ofperceptions as well as expectations. Perceptions can be described as the subjectiveobservations of the phenomenon of nursing care delivery; they answer the question:"What is happening out there?" Spousal perceptions could be used in defining thepresent status of institutional care, determining various trends in resource utilization,and identifying patterns of care that need to be modified or enforced (Petersen,1989). Expectations, on the other hand, are concerned with "What is the consumerlooking for?". Expectations may originate from the spouses' ideal, or preferredvision; or they may be related to practical, or anticipated expectations that are"learned" from experience (Doering, 1983). A knowledge of both perceptions andexpectations from the person who knows the resident best can help to sensitizenurses to the needs and wants of the institutionalized elderly. Frequently, thedelivery of nursing care is determined by professional standards alone and not inconcert with the consumer. Given the complexity of the care of the cognitively-impaired elderly, the emotional burden of institutionalization, the limited resources onhand, and the rise in consumerism, the expectations have surpassed those standardsand criteria delineated for previous periods. Consequently, assumption of a possiblegap between spousal perceptions and expectations may be reasonable. Knowingthe family perspective may assist nurses to develop greater empathy and to betteraccept the need for changes or improvements in nursing care. Congruence between5spousal perceptions and expectations denotes agreement with "what is" and "what itcould be" and may be construed as a quality attribute (Petersen, 1989).Historically, nursing care in institutions has been appraised by the extent towhich a resident is cared for physically. Spouses and family members, for example,value the merits of cleanliness in basic hygiene. In addition to demanding goodphysical care, spouses and families place equal, or greater, emphasis on thepsychosocial needs of residents. Frequently, the evidence of caring behaviours formthe basis by which nursing care quality is determined (Gal!man, 1988; Sullivan &Decker, 1988). Caring can be defined as "the intentional actions and attitudes thatconvey physical care, emotional concern, and promote a sense of safety and securityin another" (Larson & Dodd, 1991. p. 61). When consumers feel a sense of caringfrom the nurse, nursing care is more likely to be construed as being of good quality.Since caring is concerned with attitudes, its presence within nursing practiceis reflected in the behaviours of the nurse-patient* interaction (Gallman, 1988). Thedemonstration of confidence, attentiveness, and sensitivity to physical and emotionalneeds, willingness to answer questions and explain procedures, and competenttechnical performance, especially from ancillary nursing staff such as the patient careaides, convey the perception that the nurse "cares" (Gallman, 1988). For example,taking the time to keep the spouse informed of the state of a resident's commonseasonal illness may be a demonstration of good nursing care. Meeting theresident's physical and psychosocial needs involves knowledge as well ascommunication, sharing, and empathy supported by caring. Caring is useful in*The terms "patient" and "resident" will be used interchangeably in this thesis.6providing a context for the conceptual framework in viewing the spouses'perspective of nursing care.Conceptual FrameworkBloom (1963), a sociologist, identified a Total Transactional System in the doctor-patient relationship. This system is applicable today to nursing in light of theconcerns of spouses with physical and psychosocial care delivery in long term careinstitutions.Bloom (1963) posited that there is a psychosocial aspect to health caredelivery. This author views the doctor and the patient as a dyad "drawn together"out of compelling health care needs (Bloom, 1963, p. 24). He identifies twocomponents in this relationship which apply equally well in the nurse-patientrelationship. They are the instrumental and expressive transactions of care delivery.According to Bloom (1963), the instrumental transaction is associated with theapplication of technical knowledge and clinical skills to solving problems at hand.The expressive transaction pertains to the affective or interpersonal aspects of thedoctor-patient relationship. Further, Bloom alludes to another aspect of thisrelationship which has not been formalized in his Total Transactional System. Thisaspect is associated with the communication needs of the patient.Petersen (1989), a nurse, studied the notion of patient satisfaction and notedthe importance of the patient's need to be informed. Petersen expanded on Bloom'sframework by labelling the patient's need for information as the communicativetransaction in a nurse-patient relationship. Petersen has added this transaction asthe third component in Bloom's Total Transactional System and it relates to imparting7information relevant to the resident and his/her family. Peterson further identifies thefollowing descriptors as contributing significantly to the perception of quality nursingcare, and each one can be categorized under one of the three aforementionedtransactions:1. Descriptors related to the instrumental transaction-Being comfortable-Learning how to participate in care-Feeling safe-Receiving professional help with activities of daily living.2. Descriptors related to the expressive transaction-Being treated as individuals-Maintaining dignity and independence-Having staff available to tend to them-Feeling reassured.3. Descriptors related to the communicative transaction-Being listened to-Being informed about what will happen-Feeling more in control-Decreasing stress-Understanding treatment and unit routines.Bloom's framework serves to emphasize that technical expertise is but oneaspect of nursing care delivery. The psychosocial component of care delivery8requires the demonstration of caring behaviours, supported by knowledge and skill,to address the emotional and social needs of the cognitively-impaired resident.Problem StatementThe cognitively-impaired elderly enter institutions because their complex careneeds can no longer be adequately met at home by their families. Even as thephysical care is relinquished to caregivers, the emotional attachment to theirhusbands/wives residing in institutions remains strong. The spouses' past caregivinghistory, their emotional burden, the presence or absence of perceived caringdemonstrated by nursing staff, and the limited financial and human resourcesavailable to institutions may be some of the factors which shape spousal perceptionsof institutional nursing care. Since expectations are reflective of the idealcircumstance to begin with, incongruency between perceptions and expectations ofinstitutional nursing care can be anticipated. As family and advocate for thecognitively-impaired institutionalized elderly, and "most common caretaker", spousesof residents are in a unique position to speak on their behalf and to shed light on theissue of care quality in institutions (Hayter, 1982, p. 84).Purpose of the Study The purpose of this study was to determine the differences between thespouses' perceptions and expectations of nursing care delivered to their cognitively-impaired institutionalized elderly.Research Question9This study sought to solicit the spouses' perceptions and expectations ofcertain identified nursing care activities. The specific question that directed thisstudy was:"What are the differences between spouses' perceptions and expectations ofnursing care delivered to their cognitively-impaired institutionalized elderly?"Definition of TermsThe following conceptual definitions were used in the study:1. Spouse: husband or wife of the institutionalized cognitively-impaired elderly.2. Perceptions: the spouses' subjective observations of the phenomenon ofnursing care delivery to the cognitively-impaired institutionalized elderly:What is happening out there?3. Expectations: the spouses' own subjective, preconceived suppositions of thephenomenon of nursing care: What they believe nursing care ought to be andwhat they are looking for in nursing care.4. Quality: congruence between perception and expectation of nursing care.5. Nursing care: an activity performed by the nurse to meet the physical,psychosocial, communication, and caring needs of the institutionalizedelderly.6. Institutionalized elderly: husband or wife of the informant who is 65 years orolder and who has resided in the long term care facility for at least sixmonths.7.^Cognitively-impaired: any resident who has difficulty processing informationassociated with, but not limited to, a number of dementing processes,1 0including Alzheimer's Disease, dementia, organic brain syndrome, andstrokes/cerebral vascular accidents (CVAs).Assumptions The study was approached with the following assumptions:1. Views expressed by the informants may also include those of theinstitutionalized elderly.2. Nursing staff referred to may include Registered Nurses, Licensed PracticalNurses, and Nursing Care Aides.Limitations1. This study examined only selected aspects of the spouses' perceptions andexpectations of nursing care.2. The nursing actions referred to in this study could have indicated activitiesperformed by more than one aggregate of nursing staff.3. The respondents may have articulated their perceptions based on nursingactions in general and they may have been unable to differentiate the level ofnursing staff or their functional responsibilities.4. Due to the small sample size, the findings from this study are notgeneralizable.1 1Significance of the Study Scientific SignificanceAs nursing care is always delivered within a social context, a quantitativestudy can help to identify the areas which may be a source of difficulty for familiesof the cognitively-impaired institutionalized elderly. The knowledge generated fromthis study may encourage other research initiatives to continue to study the notion ofquality care delivery. The results from this study may assist in the development ofquality care studies from the caregiver perspective and resident satisfaction withnursing care.Practical SignificanceBecause providing quality nursing care service is extremely important, it iscritical to recognize that residents and families have varying degrees of serviceexpectations and that they may not be congruent with those conceptualized bymanagers of nursing care (Rempusheski, Chamberlain, Picard, Ruzanski, & Collier,1988). Knowledge of any differences between expectations of nursing care andactual nursing care received from the spousal viewpoint can foster a stronger nurse-consumer relationship and improve resident care by providing the opportunity fornurses to explore those expectations. Moreover, accepting the perceptualcomponent of quality also helps caregivers change their focus from defending theiractions to determining how to influence the families' expectations in a more positivemanner (Petersen, 1989). At the same time, consumers may need to modify theirexpectations toward a goal that is no longer excellence at any cost, but rather,optimal quality within available resources (Vuori, 1980). Because the hospital and12institutional sector remain the area of greatest cost in health care, this sector hasbecome the most sophisticated resource conscious sector in the health care system(Hastings, 1985). The elderly, who use a disproportionately greater amount of in-house care support, (as much as 30% for those 85 years of age and over), are oftenresidents of British Columbia's long term care* facilities (Seaton, Evans, Fyke,Sinclair, & Webber, 1991). Even though the care of the chronically ill elderly is oneof the most critical elements within the health care system, it is not immune to thedriving force of cost and expenditure containment (Hastings, 1985; Seaton et al.,1991). Results from this study may assist in future definitions of "quality"institutional nursing care by generating knowledge from a consumer perspective issignificant to the care of the cognitively-impaired institutionalized elderly rather thanmerely concerned with the satisfaction of the care received (Eck, Meehan, Zigmund,& Pierro, 1988).SummaryThere is a growing number of older people requiring institutional care as aresult of a cognitive impairment associated with increasing age. As a vulnerable andincapacitated group of care recipients, the institutionalized elderly may not bephysically/mentally able to comment on the state of institutionalized nursing care.Their spouses have been identified as the key spokespersons for the institutionalizedelderly. A conceptual framework using Bloom's Total Transactional System wasselected to describe the context of nursing care quality. The findings of this studymay provide information to assist in the development of further studies pertaining to*Long term care is also known as extended care/continuing care/nursing home care.quality care issues. Knowledge of any differences between perceptions andexpectations may foster a stronger nurse-consumer relationship in addition to theimprovement of resident care. The next chapter presents a review of the pertinentliterature.1314CHAPTER TWOLiterature ReviewOverview The spouses' perspective on nursing care for the cognitively-impairedinstitutionalized elderly has not received wide spread attention in the literature. Asthe population ages and more elderly persons enter long term care facilities, there isincreasing scrutiny in the way institutions deliver nursing care. The institutionalizedcognitively-impaired residents are confined by their disabilities and are unable toprovide an evaluation of the quality of care received. Their marital partners possessintimate knowledge of the residents' needs and the spouses' emotional attachmentwell qualifies them to advocate on the resident's behalf. The notion of nursing carequality must include a definition from the perspective of the consumer if it is to bemeaningful and valid. Improvement in care requires an understanding of the spouses'perceptions and expectations and the influences that might impact on them(Johnson, Morton, & Knox, 1992).The spouses' perceptions and expectations, however, are influenced by manyfactors. The following is a review of the limited literature pertaining to those factorswhich may influence the way nursing care is perceived and expected in institutions.The literature review is organized into four sections. The first section describes theincreasing dominance of institutional care of the cognitively-impaired, since increasedaging is associated with increased institutional care. This section includes futurepopulation aging trends and statistics and their relevance to institutionalization. Thesecond section pertains to the spouse as caregiver, and the factors that eventuallynecessitate the institutionalization of the demented elderly in care facilities.15In order to appreciate the spouses' perspective as consumers of health care,there must be an understanding of their stresses and overriding concerns ascaregivers. In section three, research regarding the effects of institutionalization willbe presented. In particular, the assumption that institutionalization impactsnegatively on the life of residents is explored. Section four is concerned with studiesof the impact of different approaches to nursing care of the cognitively-impairedelderly in institutions. Caring is supported as the underlying attribute upon which thecomponents of the conceptual framework, the instrumental, expressive, andcommunicative transactions are based. Taken together, the burdens, stresses, andresponsibilities associated with caregiving, the documented impacts ofinstitutionalization, and the limited resources available in institutions, provide supportfor the study of spousal expectations.Trends in Population Aging and the Reasons forInstitutionalizationPalmore (1986) asserted that as life expectancy increases, this longevity isaccompanied by an even greater proportion of disability. Canadian census figures for1986 projected a 4% annual growth rate for those aged 80 and over for the rest ofthis century (Ministry of Supply and Services, 1988). Strong growth, equalling 3%per annum, will continue into the first decade of the twenty-first century (Ministry ofSupply and Services, 1988). The projections forecasted a sharp increase in the over85 age group for the period between 1991 to 2011. After 2011, the "Baby Boom"generation will have reached 65 years of age. Therefore, by the year 2021, nearlyone in every five Canadians will be aged 65 years or over (Ministry of Supply and16Services, 1988). According to the Health and Activity Limitation Survey, 78.9% ofpersons with disabilities living in institutions were aged 65 and over (StatisticsCanada, 1991). The incidence rate for cognitive impairment has been estimated tobe 1% among individuals over 65 years and 1.9% to 2.5% among those over 80years (Canadian Task Force on the Periodic Health Examination, 1991). Sincecognitive impairment occurred most frequently among the "old-old", the prevalencerate among those over 80 years with cognitive impairment was estimated to be 12.1to 22 percent (Canadian Task Force on the Periodic Health Examination, 1991). Astaggering 47% of those over 90 years will also be afflicted (Canadian Task Force onthe Periodic Health Examination, 1991). Difficulty with nursing care at home as aresult of cognitive impairment often accounts for admissions to long term careinstitutions (Canadian Task Force on the Periodic health Examination, 1991).Consequently, at least 50% of the elderly in institutions suffer from cognitiveimpairment (Canadian Task Force on the Periodic Health Examination, 1991). Thefactors most frequently necessitating institutionalization include the inability to dress,bathe, and toilet independently, as well as deficits in memory and other behavioraldisturbances (Reisberg, 1986).Institutional care as defined by Statistics Canada refers to "facilities with fourbeds or more, funded, licensed or approved by provincial or territorial departments ofhealth/social services and provide nursing/counselling services as well as personalcare to residents, in contrast to the active medical treatment provided in hospitals"(Institute for Health Care Facilities of the Future, 1990, p. 240).Chenoweth and Spencer (1986) explored the concerns associated withproblems of caregivers of family members with dementia from early symptoms,17diagnosis, home care, and institutionalization. The authors found that the mostconsistent predictor of institutionalization appears to be caregiver stress resulting infacility care as the final resort (Crossman, London, & Barry, 1981; Johnson &Werner, 1982; Mathew, Mattocks, & Slatt, 1990; Stephens, Kinney, & Ogrocki,1991; Stone, Caffererata, & Sangl, 1987; Tobin & Kulys, 1981; Zarit, Reeves, Bach-Peterson, 1980; Zarit, Todd, & Zarit, 1986).From initial occurrence of symptoms to the point of diagnosis, the familieswere ill prepared to care for their relatives, especially the "behavioral changes thatoccur as a consequence of the disease" (Chenoweth & Spencer, 1986, p. 269).Other problems described by the respondents which led the spouse to the decision toinstitutionalize included personality changes, demands of 24-hour care, isolation fromfriends, and embarrassment in public.One of the concerns most frequently cited by families was a problemassociated with institutional care. Some facilities were staffed by "untrained staff,particularly the lack of training about caring for patients with dementia" (Chenoweth& Spencer, 1986, p. 271). This perceived difficulty, along with dwindling numbersof personnel staffing institutions, engendered feelings of anxiety, frustration,entrapment, and guilt in families when a transfer of the cognitively-impaired elderlyto an institution was necessary (Barer & Johnson, 1990; Johnson & Werner, 1982;Riffle, 1989; Schwartz & Vogel, 1990). The notion that the families were "puttingtheir relative away" was cited by respondents in the study by Schwartz and Vogel(1990, p. 53). Hayter (1982) reported that families were often accused of"dumping" their elderly relatives into institutions (p. 84). As a result, there is acompelling need by some family members to maintain continual involvement as an18insurance that proper care for their aged relative is maintained at all times.Sometimes, family members became over-protective in an attempt to do "what isright" (Shuttlesworth, Rubin, & Duffy, 1982, p. 200).Chenoweth and Spencer (1986) cited the following reasons forinstitutionalization from their study of caregiver experiences. They include "24-hourcare was too difficult, couldn't take it anymore" (72%), incontinence (18%), andcombative behaviour or angry outbursts were mentioned (15%). These reasons weresupported by other literature (Sanford, 1975; Zarit et al., 1980, p. 271). Mainsymptoms which necessitated families to seek help in the first place were memoryloss and disorientation (52%). "The gradual, insidious nature of dementia produces amystifying clinical picture, causing families to mistrust their own perceptions or todeny the gravity of the changes" (Chenoweth & Spencer, 1986, p. 272). The resultsof this study supported those already revealed in the literature: Spouses, inparticular, constantly struggle to adapt and adjust to the increasingly dependentcognitively impaired elderly to the point that physical resources have been exhausted(Cox, Kaeser, Montgomery, & Marion, 1991; Crossman et al., 1981; Fitting, Robins,Lucas, & Eastham, 1986; George & Gwyther, 1986; Getzel, 1982; Golander, 1987;Pagel, Becker, & Coppel, 1985; Stephens et al., 1991, York & Calsyn, 1977; Zarit etal., 1980; Zarit et al., 1986). Fengler and Goodrich (1979) referred to caregivingspouses as the hidden victims. Many of the caregivers require help and support asmuch as their disabled family members. Literature focused on the impact ofcaregiving upon the spouses (Crossman et al, 1981; Johnson & Werner, 1982;Mathew et al., 1990; Purchno & Potashnik, 1989; Stephens et al., 1991; Stone etal, 1987; Tobin & Kulys, 1981; Zarit et al, 1980; Zarit et al, 1986). The physical19and emotional demands of caregiving are superimposed on stresses already existing:the spouses own aging process and its attendant changes, a sense of isolation andloss of control, self-blame, loneliness, depression, and role overload (Crossman et al.,1981; Pagel et. al., 1985; Pruchno & Potashnik, 1989). Few studies, however,defined specifically the spouse's role as caregiver (Klein, Dean, & Bogdonoff, 1967;Lezak, 1978; Sainsbury & Grad de Alarcon, 1970; Sanford, 1975). The followingdiscussion explores the implications of the spouse as caregiver and its associatedtasks within that role.The Spouse as Caregiver Spousal caregivers frequently go to great lengths to avoid institutionalizationof their husband/wife (Riffle, 1989). Particularly, these feelings stem from a reducedchoice to institutionalize especially if there is still one other choice that is viable, forexample, home nursing care. On the other hand, Johnson and Werner (1982)studied 153 families who had admitted an elderly family member to a facility andfound that admissions due to the symptoms of immobility or failure to recognizepersons were associated with lower guilt and anxiety.The stresses of caring for a cognitively-impaired elderly are considerable(Chenoweth & Spencer, 1989; Crossman et al., 1981; Fortinsky & Hathaway, 1990;Johnson & Werner, 1982; Lezak, 1978; Riffle, 1989). Spouses feel chronically tieddown since they must be continually available to provide care and treatment and tooversee the disabled elderly's daily activities (Lezak, 1978; Riffle, 1989). To add tothe physical and emotional burden, these feelings are often complicated by guilt.Wives sometimes wish for their husbands' death and at times resent their presence(Crossman et al., 1981). One wife stated: "I sometimes wish he had died after his20stroke. He is miserable because he can't walk and can't talk, and I'm wearing downunder the strain of all the constant work" (Crossman et al., 1981, p. 466). Thesecaregivers often fulfilled their roles for years without outside information, services, orsupport (Fortinsky & Hathaway, 1990). As a result, there was little opportunity tomeet their own needs, to take vacations, or to make future plans (Riffle, 1989).Although the fact that caregiving poses stress, strain, and burden is wellestablished, the criteria used to identify the caregiver are not as well delineated(Barer & Johnson, 1990). According to the authors, there is a range of meaningsattributed to the term "caregiver". Arbitrary definitions may be based on the type ofhelp provided, such as those who provide "hands-on" physical care and those whoprovide occasional or emergency assistance (Hooyman, Gonyea, & Montgomery,1985), to those who "mediated with the bureaucracy" (Sussman, 1976). Eachmeaning identified a diverse way of viewing the caregiver role and the accompanyingattributions associated with that particular role. For example, those who providedbackup support, took the elderly person to appointments or tended to day-to-dayroutines can all be described as caregivers (Barer & Johnson, 1990; Chenoweth &Spencer, 1986). One of the more explicit and useful definitions of caregiver wasdescribed by Stone et al. (1987). The authors assigned the term primary to describea caregiver as one who had total responsibility for the provision of care, whilesecondary caregivers did not have that responsibility. For example, "care" on oneoccasion of assistance was significantly different than round-the-clock hands-on"care".Studies focusing on the caregiver tended to be limited to the spouse (Fittinget al., 1986; Getzel, 1982; Zarit et al., 1986). For an elderly couple with health21problems, the caregiver was most likely to be the wife since women tended to beyounger than their husbands and lived longer (Shanas, 1979; Mathew et al., 1990).Also, a majority of women in this age group had been socialized to occupy thecaregiver role and this pattern will persist into later life (Crossman et al., 1981). Instudies pertaining to caregiving, many authors reported that a majority of familycaregivers were women. Silliman, Fletcher, Earp, and Wagner (1986) found that ofthe primary caregivers they interviewed, 84% were women. In another study byScott, Roberto, and Hutton (1986), women constituted 65% of the respondents.Seventy-one percent of the caregiving subjects in George and Gwyther's (1986)study were female. Caserta, Lund, Wright, and Redburn (1987) reported 73.5% oftheir subjects were women. Women subjects accounted for 76% in a study byHorowitz (1985). Gilhooly (1986) reported 81% of his caregivers were women.Finally, Zarit et al. (1980) reported that female subjects made up 86% of the samplein their study of the caregiving experience. Little is known, however, about the malecaregiving experience (Mathew et al., 1990). Fitting et al. (1986) studied thecaregiving experience in husbands and wives and found that female caregivers weremore distressed than male ones, and younger caregivers were more resentful of theirrole than older ones. Vinick (1984) found that men were more stoic and tended tominimize the hardships including feelings of isolation. Both husband and wifecaregivers institutionalized their family members when they perceived their spousesto be severely impaired (Mathew et al., 1990). The study conducted by Mathew etal. (1990) suggested that men represented a minority in studies on caregiving. Theauthors reported that it was difficult to identify and to obtain consent from malecaregivers and their responses were generally brief. More studies appear to be22needed in order to understand and appreciate the husband's role in spousalcaregiving.Clark and Rakowski (1983) identified four categories of caregiver tasks:direct physical care to the elderly family member, dealing with the caregiver's ownconcerns and difficulties, interpersonal ties with other family members, and dealingwith members of the health care community. Very little was found in the literatureregarding the specific activities spouses must contend with while caring for theirimpaired husband/wife at home. Sandford (1975) studied 50 family caregivers toidentify the problems with which the caregivers find it impossible to cope. Theauthor found that the problems identified fell into three categories: the elderly'sbehaviour patterns, the caregiver's own limitations such as insufficient strength forlifting, arthritis, back strain, personality conflicts, anxiety and depression; andenvironmental and social conditions (Sandford, 1975). The management problemswhich resulted from the elderly individual's disability were directly related to theperson's diagnosis of senile dementia (62% of respondents) and its accompanyingmanifestations (Sandford, 1975). The percentage of nursing care which familymembers found intolerable included: helping the family member to walk (87%),assisting with getting on the commode (78%), and off the commode (79%), shouting(80%), incontinence (57%), daytime wandering (67%), sleep disturbances (84%),managing physically aggressive behaviour (56%), communication (50%), and dealingwith dangerous behaviour (62%). Caregivers' own limitations included those of apsychosocial origin. These personal difficulties were directly related to caregivingand included anxiety and depression (35%), inability to leave dependant for morethan one hour (29%), and restriction of social life (43%).23Very often, meeting the spouse-caregiver's own needs is in directcontravention of meeting the elderly person's requirement for survival. Caring for acognitively-impaired elderly spouse exacts a heavy toll on the caregiver's emotional,physical, and social well-being (George & Gwyther, 1986; Pagel et al., 1985; Riffle,1989; Stevens et al., 1991; Zarit et al., 1986; Zarit et al., 1980).Unfortunately, even when family caregivers institutionalize their cognitively-impaired elderly in an effort to improve their own health and psychosocial well-being,their stress often continues and may even be exacerbated after admission (George &Gwyther, 1984; Pagel et al., 1985). This finding contradicted common senseexpectations that as the care shifts from family to professional nursing staff,caregiving stress would be decreased or eliminated. Instead, research has indicatedthat spouses do not necessarily relinquish their caregiving role even though theirhusband/wife no longer lives with them (Shuttlesworth et al., 1982; York & Calsyn,1977). The "pay-off" to spouses for their continued involvement includesopportunities to demonstrate caring behaviours to their institutionalized elderly. Inother words, families obtain satisfaction from providing emotional comfort when theyare able to tend to those needs rather than the technical aspects of their resident'sphysical care. By being involved, families of residents also ensure that they do notleave the achievement of psychosocial aspects of care to chance (Bennett, 1980)."When families remain involved with their relative in the nursing home, the quality ofnursing home care appears to benefit" (Shuttlesworth et al., 1982, p. 200). Severalauthors suggest that residents whose families visit them regularly receive better carefrom staff; have higher morale and life satisfaction; and, feel less lonely andforgotten (Gottesman, 1974; Harel, 1981). Partly for these reasons, spouses oftenmaintain their close emotional ties even after institutional placement (Montgomery,241982; Smith & Bengtson, 1979; Tobin & Kulys, 1981; York & Calsyn, 1977). Thesespouses continued to visit regularly; the visiting patterns were stable over time andthey did not increase or decrease when the institutionalized elderly becameprogressively impaired (Stephens et al., 1991). In addition, the spouses continued toassist with such caregiver tasks as grooming, walking, and doing laundry for theirfamily member. This continual involvement with facility care may explain the reasonfor the similarity in stress levels between in-home family caregivers and those whoserelative has been institutionalized (Montgomery, 1982; Smith & Bengtson, 1979;Tobin & Kulys, 1981; York & Calsyn, 1977).The Effects of InstitutionalizationThe spouse is the key variable in determining whether a cognitively-impairedelderly person will remain in the community or be institutionalized (Brody, Poulshock,& Mascioschi, 1978; Pa!more, 1976; Townsend, 1965). The spouse's level ofburden very often impacts on the family's ability to cope with the extent of carerequired by the impaired elderly. At the same time, as previously stated, even as thespouses relinquish their primary caregiving role, they carry with them the burden ofcaregiving in their secondary role. Feelings of frustration, entrapment, and guilt mayinfluence the way spouses view institutional nursing care delivery and theirpreconceived notions of acceptable care quality. In addition, family members are notgenerally knowledgeable about the restrictions, norms, and the way "things operate"in institutions.The negative effects of institutionalization were well documented in theliterature (Go!ander, 1987; Huss, Buckwalter, & Stolley, 1988; Zarit et al., 1980).The relocation process itself, the question of nursing care quality provided in25institutions, the lack of meaningful relationships, and the maintenance of a selfidentity contribute to the immense adjustment required to cope with institutional life.This negativity remains pervasive: "Institutionalization is often associated with, ifnot accused of, high mortality and morbidity rates of aged residents" (Golander,1987, p. 27). Institutionalization was often linked with regimented and impersonalcare (Huss et al., 1988). Other negative effects cited include depersonalization ofthe individual, loss of identity, increased disorientation, helplessness, and depression(Golander, 1987; Huss et al., 1988). Indeed, the quality of care in institutions hasbeen questioned. Yet for some spouses of the cognitively-impaired elderly,alternative 24-hour care arrangements other than institutionalization may beimpossible to attain. Spouses often feel caught "between a rock and a hard place".While the functional aspect of caregiving will have been resolved byinstitutionalization, the emotional dilemma of placement may very well becompounded. Unlike the elderly person's home environment, there is a"collectiveness" and "impersonality" to facility care (Golander, 1987). For example,the awareness that physical discomfort is often not immediately relieved, as it is athome, is difficult to accept. This may be evident when the resident is not assistedas soon as his/her meal tray arrives on the unit, or is not changed the very minutehe/she is discovered wet or soiled. What is "good enough" for one resident is alsoadequate for every other resident seems to be another prevailing attitude. The lossof individuality and not being catered to may be some of the intolerable traits of totalinstitutional nursing care.26Nursing Care of the Institutionalized Elderly From the literature review thus far, the disabilities generated as a result ofcognitive impairment more than suggest that this elderly population would requireinstitutionalization and special nursing care. Frequently, standards of nursing carehad been formulated in the clinical setting without input from the consumers served(Hanson Frost, 1992). A major concern is whether consumer expectations andprofessional standards are compatible: Do the cognitively-impaired elderly require anincrease in the scope and quantity of nursing care as compared to those who arephysically disabled?According to Gustafson (1984), nursing care was defined as the specificactivities performed by nurses as caregivers to the patient. Nursing care activitiesencompassed a variety of tasks which the nurse performs. For example, Shook andBeck (1991) compared the nursing care needs of the cognitively-impaired elderly andthose with only physical disabilities. The authors posited that the likelihood is thatthe needs of the cognitively-impaired will present a heavier workload for nursing staffnot only in time but also in characteristics of care delivery. Through a directobservational pilot study, the authors addressed the "instrumentalities" of fouractivities of daily living: bathing, grooming, eating, and toileting. A considerableamount of patience was required to modify the environment, to provide reassuranceand encouragement, and to focus attention to the task at hand, be it eating orgrooming. Not surprisingly, assistance rather than "doing for" requires more nursingcare. As well, the impaired elderly may be disinhibited, becoming boisterous,disruptive, and aggressive. This behaviour may pose a safety risk to themselves,other residents, and staff. Their moods and temperament may fluctuate widely,27making it difficult for nurses to establish nursing care routines (Shook & Beck, 1991).When routines are not followed due to lack of cooperation, spouses can becomedefensive of their institutionalized husband/wife.Because these authors did not make known their research methodology, themerits of extrapolating these research findings and their applicability to clinicalpractice are difficult to evaluate. Practically, however, health professionals familiarwith the care of the demented elderly will likely concur that while the instrumentalactivities are vital to quality care delivery, the "expressive" component, that is theinteractionary processes of nursing staff, is equally critical to positive outcomes forresidents. Without constant, respectful verbal and nonverbal cues, little constructiveresponse will be elicited from the cognitively-impaired elderly. The findings from theShook and Beck (1991) study may provide the basis necessary for replicating a studyconducted in a more controlled manner.At present, very little literature is available which examines the exactconditions that will enhance the nursing care specific to this group of complexresidents. However, Burgener and Barton (1991) studied the essence of the nurse-resident interactional process. The Interaction Behaviour Measure (IBM) was used asthe major instrument. It contained 12 items describing interaction behaviours on aseven-point semantic rating scale (Burgener & Barton, 1991). This instrument wasconsidered internally consistent, with alpha estimates ranging from .64 to .92(Burgoon & Aho, 1982). The numbers of resident subjects were small (N=12). Theresidents were selected from the institution's Alzheimer's dementia unit, according tohigh or low mental functioning as ascertained by the Mini-Mental State Exam(MMSE), which the authors have found to be consistently reliable with this28population. Nursing assistants and residents were observed in one of two situations:dressing the resident and during an interpersonal contact of "no specific task"purpose. This method of observation resulted in 239 interactions. Findings indicatedthat several nursing staff behaviours were important in the attempt to have theresident dress, with significant correlations ranging from r = .24 to r = .69 (Burgener &Barton, 1991). Although a cause and effect relationship cannot be established, itappeared that an increase in interpersonal transaction from nursing staff facilitatedgreater participation on the part of the elderly resident. In addition, the manner inwhich the verbal stimulation was delivered was critical. A personal rather than anauthoritarian communicative mode appeared more effective with this client group. Intask interactions, staff tended to do more for the client than was actually necessary,instead of inviting active participation or assisting in the performance of theresident's own care. This was especially important for the more cognitively-alertresident. Armstrong-Esther (1986) asserted that caregivers spent less time withconfused rather than lucid residents. Yet, confused residents spent only 16% oftheir time in purposeful activities. Because families placed great emphasis on theholistic treatment of their cognitively-impaired institutionalized elderly, the families'expectations of nursing care may well have exceeded some nursing care practicedomains.Avorn and Langer (1982) found that overly intrusive impatient assistancebeyond the clinical requirements in self-care reduces the elderly person's ability toperform simple psychomotor tasks unaided. Excessive infantilization, includingpaternalization, led to "learned helplessness" and a perceived lack of control andautonomy with further disability (Cox et al., 1990). The use of praise, humour, and29a positive caring tone of voice with eye contact were generally greeted with positiveresident behaviours. "If any behaviour seemed to be able to "turn a residentaround", it was a show of positive regard expressed in this way, "You know I reallycare about you" (Burgener & Barton, 1991, p. 41).Mayer (1987) defined caring as "the direct and indirect nurturant and skilfulactivities, processes, and decisions related to assisting people to achieve or maintainhealth" in a professional nurse-patient relationship (p. 48). These included theattributes of the caregivers, the caring process, and specific behaviours that conveya sense of caring underlying the delivery of nursing care (Mayer, 1987).Watson, Burckhardt, and Brown (1979) described caring as both expressiveand instrumental in the nurse-patient interactionary process. Expressive activitieswere characterized by support and rapport based on sensitivity, compassion,warmth, genuineness, comfort, protection, and respecting and accommodatingprivacy and territorial needs. Instrumental activities included: "physical action-oriented helping behaviours such as administering medications, following policies andprocedures, maintaining a safe environment, and teaching" (Mayer, 1987). Incommunicative and expressive transactions, nursing staff may concentrate on thecontent of the interaction rather than addressing the underlying emotions in theresident. Undoubtedly, the message is important especially if the purpose of theinteraction is to impart information or to offer guidance and direction. By not payingattention to the affective component of the message and how this message might beunderstood by the recipient, interaction will remain superficial and be carried out withan apparent lack of caring (Watson, 1979). For residents and their families, staff30involvement may be perceived as "going through the motions", consistent with whatone might expect in institutions.In a study conducted by Hamilton (1989), patients with some degree ofcognitive impairment in a chronic geriatric hospital commented that lack of decisionmaking pertaining to their own care or initiative in informing them about who wouldbe looking after them on the next shift were conditions that affected their comfortlevel in addition to being returned to bed when requested or being positioned on aparticular side. A lack of understanding of the residents' situation and how theywere feeling and to their basic physical care needs was frustrating and upsetting toresidents and their families alike (Hamilton, 1989). This study suggested that thesingle most critical indicator of care quality was the one-to-one interaction betweenthe nurse and the cognitively-impaired resident.Not surprisingly, there appeared to be a prevailing attitude among elders andfamilies that affordable institutions did not provide care with a focus on maintainingor enhancing the elder's quality of life (Cox et al., 1991). Cox et al. (1991), in alongitudinal nonequivalent control group study, tested the effects of theexperimental Quality of Life Nursing Care (QLNC) model on quality of life outcomesof elderly cognitively-alert residents in long-term care facilities. The authors positedthat nursing care can be provided to all institutional residents without additional costto either the institution or the resident. In this study, nursing assistants werepermanently assigned to residents; each resident had a case manager who workedthe same shifts as the nursing assistants, and shift schedules are altered toaccommodate residents activity routines. For example, there were 0600 hours to1400 hour day shifts. The staff informed the resident and their families about who31was on duty and when there were changes to the staffing. The goals of nursingaction were optimal resident functioning, social and psychological well-being, healthmaintenance and promotion, and control over decisions.A systematic random sample of 23 experimental and 23 control residents, who werecognitively intact, was selected from all residents in two units respectively. The finalpost-intervention sample consisted of 21 experimental and 18 control residents whohad completed both the pre- and post-intervention measures. Several measures wereused. They included the Locus and Range of Activities Checklist, the Self-Management Scale, and the General Well-Being Schedule used to measurepsychological well-being. Satisfaction with care included services, routines, andprivileges within the nursing home. A Liken scale was used to measure thiscomponent of the study. Cronbach's alpha less than 0.65 on either the pre- andpost-intervention measures were not used in subsequent analyses as these scoresdefined the instruments as being unsuitable. The results of this study demonstratedthat the nursing care should focus on the holistic needs of the resident rather than onthe tasks and procedures of "body" care. Often there is a misconception amongstnonprofessional nursing staff that visible care when carried out properly is all that isentailed in caring for the elderly (Huss et al, 1988). It is "personhood" care such asoffering choices and control of everyday activities that makes the difference betweena sense of life satisfaction or the "stripping away the very essence of a person -his/her dignity and self-worth" (Huss et al., 1988). Clearly, consumers may haveplayed only a limited role in voicing their expectations of nursing care (Eck, Meehan,Zigmund, & Pierro, 1988). Although cognitively-intact residents can play a role in32their own care, cognitively-impaired residents may need an advocate. Spouses oftenfulfil this role.Langer and Rodin (1976) in a field experiment to assess the effects ofenhanced personal responsibility and choice on a group of nursing home residents,found that residents who were encouraged to take responsibility in their dailyactivities by engaging in plant care showed significant improvement in their well-being and behavioral measures than their control group counterparts.Chang (1978) and Pohl and Fuller (1980) examined the notion of choicewithin institutions. Chang (1978) found that perceived situational control was thepositive interactive effect which contributed to the increased morale of residents.Similarly, Pohl and Fuller (1980) found that choice within an institution contributed toa higher morale in their study of 50 nursing home residents. These findings weresupported by Moos (1981) who also determined that choice and control fosterindependence and social functioning especially among female residents.The literature revealed that residents in long term care institutions cope withthree interrelated concerns: physical comfort, maintaining a sense of mastery,control, and self identity, and feelings of being cared for (Golander, 1987; Hamilton,1989; Higgins Vogel & Mercier, 1991; Mayer, 1987; Larson, 1984, 1986, 1987;Larson & Dodd, 1991; Larson & Ferketich, 1989). Theoretical foundations havesupported caring as the underlying attribute upon each of the instrumental,expressive, and communicative transactions of the nurse-patient relationship isviewed.Gustafson (1984) defined caring as the totality of service rendered throughthe nurse-patient interaction. Gaut (1984) surmised that caring is a mediated action,33in that it is often indirectly accomplished through nursing care activities whichprovide physical care, comfort, and emotional support. According to Larson (1986),"caring is an essential and universally accepted concept of nursing practice" (p. 86).It was defined as the "intentional actions and attitudes that convey physical care,emotional concern, and promote a sense of safeness and security in another" (Larson& Dodd, 1991, p. 61). The authors further stated that the inherent components ofcaring, which include behaviour, process, and outcome, have not yet received an"analytic description" and current definition within the context of nursing practice (p.86). Nevertheless, Larson and other authors reported that patients also equate muchof nursing with caring (Larson, 1987, 1986, 1984; Larson & Dodd, 1991; Larson &Ferketich, 1989). Specifically, patients have identified the following nursingbehaviours of being accessible, monitoring and following through, providingsurveillance, and demonstrating professional knowledge and skills as being importantbehaviours in making them feel cared for (Larson, 1986). Brown (1982) studied 50hospitalized medical-surgical patients for their response on feeling cared for. Eightthemes evolved as a result: recognition of individuality, reassuring presence,provision of information, demonstration of professional knowledge and skill,assistance with pain, spending time with, and promotion of autonomy.These findings demonstrated an array of responses to what constitutescaring. Caring as an attribute was not always evident to the recipient, since not allintended caring behaviours are perceived as meaningful. However, from theassertions found in the literature, it may be assumed that caring nurse behaviourscan coincide with the spouse's perception of quality in nursing care delivery. Thepotential for perceptual congruency led to Larson's (1984) study of cancer patients34and nurses to identify what would constitute caring behaviours. The author provideda definition of the outcome of caring for the patient as: "a sensation of well-beingand safeness which is the result of enacted behaviour of another" (p. 5). To achievethis outcome, Larson further stated that nurses must convey concern and attentionthrough their actions, conduct, and mannerisms. Through several studies with adultmedical/surgical and cancer patients, Larson (1984, 1986, 1987) has generated sixthemes of caring: comfort, trusting relationship, anticipates, explains, and facilitates,accessible and monitors, and follows through. These themes were incorporated inthe author's caring assessment instrument, the Care-Q II. Particular behaviours werethen determined which reflected the patient's feeling of being cared for.Studies concerning caring from the perspective of both the nurse and thepatient have been addressed in the literature (Ford, 1981; Larson, 1984, 1986,1987). No studies were found which surveyed the perspective of spouses ofcognitively-impaired residents. Among cognitively-impaired residents, spousalviewpoints may be the only reliable means to draw conclusions of care quality.Since nursing is faced with the challenge of staying as close as possible toconsumers' wishes, there is the necessity to integrate consumers' perspective withtheir own yet still remain within the confines of limited available resources.Consequently, quality may no longer be an absolute ideal, but rather a functionalconcept (Vuori, 1987). Moreover, in the practice setting, an evaluation of theperceptions and expectations of nursing service is also a partial evaluation of the careprovider. The notion that care quality is linked with the care provider will influencethe way each nurse's practice is actualized in the future delivery of quality nursingcare to the elderly (Fine, 1988).35SummaryThe literature has demonstrated that the institutionalization of the cognitively-impaired elderly stems from a sociological rather than a medical context. Normativedata reveal that the more aged the elderly individual, the more likely he/she will becognitively-impaired and institutionalized.As spousal caregivers are predisposed to stress and burden, their inability todeliver the complex nursing care needs of their husband or wife ultimately determinesthe need for institutionalization. The negative effects of institutionalization, thestigma attached to institutional nursing care delivery, and the spouses' valiantattempts to maintain their cognitively-impaired elderly at home, for as long aspossible, impact on their perception of facility care. In addition, the spouses'experiences as caregivers, their difficulty with relinquishing their caregiver role evenwhen their husband or wife has been institutionalized, and their often longstandingguilt feelings may affect their expectations of nursing care.The phenomenon of nursing care quality incorporates the concept of caringand the instrumental, expressive, and communicative components of the TotalTransactional System. Together, these attributes may be fundamental to thespouses' perceptions and expectations of the quality of nursing care delivery.Whether caring is demonstrated with the cognitively-impaired institutionalized elderlymay influence their spouses' perceptions of the quality of the nursing care rendered.The researcher was unable to find in the literature any quantitative studies ofspouses' perspectives of nursing care delivered to the institutionalized cognitively-impaired. What the literature has yielded are quantitative reports that define thenotion of quality from the caregiver and professional viewpoint. This quantitative study36addresses the viewpoint from the perspective of those most intimately related to thecognitively-impaired institutionalized elderly - the spouse, to generate knowledgewhich will assist nurses in planning and delivering the best nursing care possible incongruence with the family's expectations.37CHAPTER THREEMETHODResearch Design The comparative descriptive survey design was selected to investigate anddescribe the phenomena of spousal perceptions and expectations of nursing careprovided to the cognitively-impaired institutionalized elderly. The descriptivecomponent of the design is appropriate in collecting and describing the degree ofconformance to the selected activities of nursing care delivery; while the comparativecomponent contrasted the two dependent variables under study, specifically, thesubjects' perceptions and expectations. Data were collected by means of a self-administered questionnaire. The setting and sample, the questionnaire, humansubject protection process, data collection procedure, and data analysis are describedand discussed in this chapter.Setting and SampleThe study was conducted within the Continuing Care Nursing Services of twolarge multi-site tertiary care hospitals in the city of Vancouver, British Columbia,Canada. A convenience sample of 50 subjects was targeted through this servicearea with the assistance of the directors of nursing. Direct referrals to those spouseswho might be interested in participating was carried out through the nursing unitmanagers/unit directors.Subjects were selected using the following inclusion criteria: (1) Spouses ofthe cognitively-impaired elderly residing in selected long term care facilities. (2) Inorder to acquire adequate knowledge of their husband or wife's care in an institution,38the impaired elderly must have been a resident of the facility for six months or more.(3) Subjects were able to read and understand English.The Questionnaire Data were collected by means of the Caring Assessment Instrument (Care-QII) developed by Larson (1984) and adapted by the researcher. The Care-Q llinstrument was selected because caring was the key concept underlying the selectednursing care activities. Developed by inductive methodology, the Care-Q IIinstrument was originally a visual analogue measure with six subscales and 50 items.The six subscales include: Accessible (6 items), Explains and Facilitates (6 items),Comforts (9 items), Anticipates (5 items), Trusting Relationship (16 items), andMonitors and Follows Through (8 items). Larson defined accessibility as nurses beingreadily available to the patient and his family. Explains and Facilitates are descriptiveof those behaviours that teach, clarify, and advocate in the interest of the patient.Comfort is defined as both physical and emotional support to patients and families.Anticipation is described as putting action plans into place when a change in thepatient's condition is expected. Trusting Relationship denotes the demonstration of asense of commitment and understanding to the patient and his situation. Monitorsand Follows Through are defined as the demonstration of professional and technicalcompetency and assurance that nursing actions delegated to others would beresponsibly carried out (Larson, 1989). Larson used this instrument with cancerpatients to rate the nursing care they received during their hospital stay. Becausethe instrument was used to study the perceptions of the recipients of care, thewording was modified so that the questions would be addressed from the spousal39point of view, to be in keeping with the purpose of the study as the cognitively-impaired recipients of care cannot respond for themselves.Although the 50 items originally developed represent the behavioral domainof caring and the theoretical categorizations as reasonable representations of themajor dimension of nurse caring behaviour, "there is a strong possibility that the 50behavioral items may include some duplication" (Larson, 1989, p. 7). Consequently,the Care-Q ll contained 34 items which describe the role activities of the nursetoward the patient. Permission was obtained from Larson to adopt and modify theinstrument as follows: (1) Some of the questions were reworded so that the firstperson in the questionnaire will refer to the institutionalized elderly. (2) Instead ofusing a visual analogue scale ranging from "strongly disagree to strongly agree", amore definitive Likert scale was used in the form of a forced choice distributionrequiring participants to select from a field of 8 choices, from strongly disagree,disagree, somewhat disagree, neither agree nor disagree, somewhat agree, agree,strongly agree, and not applicable. (3) The same questions were repeated twice, thefirst time to capture the perceptions and the second time to solicit the expectationsof nursing care. Included with the questionnaire was a request for demographicinformation. Variables in relation to the respondents' age, gender, theinstitutionalized elderly's length of stay and reason for institutionalization, as well asthe age, diagnosis, and activities of daily living (ADL) requirements of the spouse-resident were solicited. A copy of the revised instrument and request fordemographic information appears in Appendix A.40Validity and ReliabilityValidity describes the degree to which an instrument measures what itpurports to measure (Woods & Catanzaro, 1988). Reliability refers to the stability,dependability, and predictability of an instrument's ability to produce the sameresults on repeated measurement occasions (Woods & Catanzaro, 1988). Larson(1984) reported that the instrument was valid and reliable. Using the Cronbach'sAlpha as the measure of internal consistency, the instrument was stable at .85 orabove in most clinical settings including Medical/Surgical and Oncology (Larson,1984). Hence, there is homogeneity of the measuring instrument since the "greaterthe reliability coefficient reflecting internal consistency, the greater the likelihood thatthe scale measures the attribute of interest and nothing else" (Woods & Catanzaro,1988, p. 249). An alpha coefficient falling within a range of .60 to .80 is indicativeof good reliability (Lord & Novick, 1968).Face validity was established by using a Delphi Survey of practising nurses onthe caring components of nursing, and a study of cancer patients' perceptions ofnurse caring behaviours (Larson, 1984). Content validity was reviewed by an expertnurse panel and they verified that the 50 items were "understandable representativenurse caring behaviours" (Larson, 1984, p. 88). Further testing resulted in thedeletion of some 16 items due to duplication. Furthermore, the majority of thebehaviours had been identified and categorized by the patients themselves (Larson,1984).In view of the purpose of this study, this instrument was seen to haveconstruct validity. Since the underlying concept supporting the perceptions andexpectations of quality care was based on the presence or absence of caring41attributes, satisfaction with nurse caring behaviours would further strengthen thistheoretical foundation. Criterion validity, on the other hand, was not established dueto the lack of similar existing instruments (Larson, 1986).Reliability of the Care-Q II was addressed by Larson (1984) with registerednurses (N =82) in a test-retest situation. The nurses were randomly selected fromthe membership of a national organization of oncology nurses. No changes of theinstrument resulted since item-ranking consistency for the five most important itemsand for the five least important items were 79% and 63% respectively, betweenTest 1 and Test 2 (Larson, 1986; Larson & Ferketich, 1989). "This instrument,carefully developed and refined in a series of research studies, provided a patientsatisfaction measure that was based on the theoretical premise of caring at thebehavioral level of nursing practice" (Larson & Ferketich, 1989, p. 12). It was noted,however, that with instrument modification, an impact on both validity and reliabilitycan be anticipated. To address these potential difficulties, a pilot study wasproposed to refine the instrument and to demonstrate the degree of validity andreliability by running a reliability coefficient on a sample of spousal subjects of themodified Care-Q II. Because only five subjects could be recruited, this number wasdeemed too few to compute a reliability coefficient - the Cronbach's Alpha.Nevertheless, the pilot sample proved to be invaluable in the refinement of thewording of the instrument.Human Subject Protection ProcessThe approval of the University of British Columbia's Screening Committee forResearch and Other Studies Involving Human Subjects was obtained, as well as42approval of the two facilities selected for the study. The researcher, who is anursing unit manager in one of the participating facilities, requested permission toattend a management meeting held on selected sites for the purpose of personallyintroducing the study to the directors and unit managers/unit directors. During themeeting, the researcher presented the proposed research project, the study'spurpose, its benefits, the respondents' rights including the refusal to answer anyquestion, the study method, and the time and effort requirements to participate inthis study. Based on the selection criteria, a list was drawn up of those spouseswho could be included in the study by each of the nursing unit managers/unitdirectors. The spouses, excluding those from the researcher's unit, whodemonstrated an interest in participating were asked to contact their nursing unitmanager/unit director. The subjects were formally recruited using a letter ofinformation (Appendix B) explaining the purpose, benefits, and relevant aspects ofthe study including a description of the questionnaire. Although not explicitly statedin the letter of information, the return of the questionnaires served as an impliedconsent.During the recruitment process, the following ethical considerations wereexplained to the prospective respondents: participation is voluntary, the respondenthas the freedom to refuse any questions or to discontinue participation at anytime,and most importantly, participation or non-participation in the study would not affectprovision of care or in any way impact on the status of the spouse-resident in theinstitution. Assurances of confidentiality were secured in the following manner: nonames or initials were used on the questionnaires and if any identifying features didexist, they were promptly removed.43Data Collection ProcedureThe questionnaire and the letter of information were mailed/delivered to theprospective subjects along with the instructions for the return of the questionnaire(Appendix C). A time frame of two weeks was suggested for completion. Astamped self-addressed envelope was included for the return of the questionnaire.*Data AnalysisThe categorization of the respondents' demographic information and theitems in the completed questionnaire was coded, edited, and entered into theStatistical Package for the Social Sciences (SPSS). Because this study pertained tobehavioural research, and in particular the measurement of attitudes, interval leveldata were obtained as follows: A Likert scale was ordered as a seven-pointmeasuring instrument, ranging from "strongly disagree" to "strongly agree", with"not applicable" responses excluded from the collation process.Strongly Disagree ^ 1Disagree ^ 2Somewhat disagree . . . ^ 3Neither agree nor disagree 4Somewhat agree ^ 5Agree ^ 6Strongly agree ^ 7Not applicable  N/ASince descriptive statistics report what has been observed in a sample, theuse of frequency distributions, percentages, and measures of central tendency wereused to provide precise, standard ways to summarize, understand, and communicatethe complex information collected (Woods & Catanzaro, 1988). The use of*Since the names and addresses of all respondents were not available, it was notpossible to send a planned follow-up letter two weeks after the initial mailing.44parametric statistics was selected to ensure more power and more flexibility.Overall, data were found to be normally distributed.* According to Skodol Wilson(1987), interval level data minimize distortion of the results. In fact, an advantage inusing parametric statistics is that they are more likely to find a significant differenceif one does exist (Munro, Visintainer, & Page, 1986). Therefore, Munro et al. (1986)advocate the use of parametric techniques for data at the ordinal level or higher,unless the assumptions for parametric use are seriously violated. Since the samplesize under consideration was greater than 20, a two-tailed dependent t-test wasperformed on the means of each statement of the six subscales pertaining to thespousal perceptions in comparison with expectations to determine any differences.A significance level of .05 was used. As with any research undertaking, the hopewas to demonstrate validity of the claims made. The potential of risk when settingthe significance level must be considered. In fact, a Type II error, or error of over-conservatism, should be avoided. In setting the significance level at the conventional.05 level, there will not be a risk of committing one type of error over another.According to Bratcher, Moran, and Zimmer (1970), at an alpha level of .05, a powerof .90 and an effect size of 1, the sample size required per cell would be 23. Withthe addition of 10% drop-out rate, the minimal number required would be 25.Therefore, targeting 50 subjects as the optimal sample size would most certainlyguarantee a return of 25 or more questionnaires. The difficulty, as will be notedlater, was with receiving an insufficient number of responses initially, but accordingto Bratcher et al. (1970), if the sample size is larger than is necessary, any*The explanation for the aptness of the MANOVA model can be found in Appendix D,supported by Appendices E and F. The MANOVA model will be introduced anddiscussed later on in this chapter.45differences whether they are subtle or not will be detected. All results, even themost trivial, would have been significant. Consequently, not only will the findings bedifficult to interpret, they will not be sufficiently credible to respond to critics.A multivariate analysis of variance model (MANOVA), specifically a profileanalysis, a multivariate analogue of the univariate analysis of variance (ANOVA),using the SPSS multivariate method instead of the repeated measures methodologywas performed. Inferential statistics were used to ascertain if the variance betweenperceptions and expectations are parallel/interactional (the test of parallelism), orotherwise coincidental or due to chance occurrences (the test of coincidence).Because the sensitivity of the test allowed simultaneous analysis of multipledependent variables, a multivariate approach was favoured. In this case, profileanalysis was used because the subjects are measured repeatedly on the samedependent variables, their perceptions and expectations. To apply profile analysis, allmeasures must have the same range of possible scores as well as having the samescore value with the same meaning on all the measures (Tabachnick & Fidel!, 1983).This is the assumption of commensurability. For this reason, profile analysis is anappropriate alternative to univariate repeated measures ANOVA. Another advantagein using a profile analysis is that a graphic presentation was included in thepresentation of the results. Multivariate techniques permitted a single analysisinstead of a series of univariate or bivariate analyses (Tabachnick & FideII, 1983).Ordinarily, a profile analysis calls for a statistical hypothesis. Because this is a level Istudy, the use of a hypothesis would be inappropriate.46SummaryThis chapter has addressed the research design to be used in the study. Thisstudy was a comparative descriptive inquiry using the CARE-Q II questionnairemodified to suit the purpose of the study and to capture the phenomenon of spousalperceptions and expectations of selected aspects of nursing care. Ethicalconsiderations including the right to participate or not in the study and such decisionhaving no influence on the care of the spouse-resident have also been addressed.Taking into account an affect size of 1, a power of .90, and the significance level of.05, to detect significant differences required a sample size of 25. Data analysisusing descriptive and inferential statistics including the two-tailed dependent t-testand a profile analysis using the multivariate approach, will conclude with thecomparative analysis and discussion of the data findings in Chapter Four.47CHAPTER FOURPresentation and Discussion of FindingsOverview The findings of this study are presented and discussed in four sections: Thefirst section presents demographic information pertaining to the spouses and theirinstitutionalized elderly. This information provides the context of the study in termsof the circumstances for admission of the cognitively-impaired elderly, the age anddiagnoses, and the assistance required for the activities of daily living.The second section presents a profile analysis of the perceptions andexpectations to ascertain if the mean profiles of the 34 statements are similar in thesense that the means are parallel, that there is no group response interaction. This isthe test of parallelism. The means of the perceptions and expectations are presentedgraphically.In the third section, the test of parallelism is applied to the mean difference ofthe perceptions and expectations for each of the six subscales: Accessible, Explainsand Facilitates, Comforts, Anticipates, Trusting Relationship, Monitors and FollowsThrough. A general discussion of the data findings constitutes the fourth section andwill conclude this chapter of the study.Demographic InformationSpouses of residents of two facilities, located in five different sites,participated in the study. Fifty questionnaires were distributed and by the end of thefifth week of the data collection process, fear of receiving less than 25questionnaires was becoming a reality. Consequently, subjects from the researcher's48unit were also recruited to participate. The total number of questionnaires returnedwas 29 for a response rate of 58%. There were 12 male and 11 female spouses inthe sample. Of the 29 spouses in the sample, only 23 provided their ages. The agesof 22 spouses ranged between 62 to 92 years with a mean age of 76.1 (N =22)years. One spouse reported himself to be 39 years while his wife was 75 years.This age was not included in the tabulation of the spouses' mean age since it wasprobable that the spouse was assisted by a younger family member who marked hisown age instead of the respondent's age. The mean age of the cognitively-impairedinstitutionalized elderly was 78.6 (N =22). Of the 24 responses received, thefollowing conditions were the most prevalent reasons for admission: strokes/CVA(52.4%), Alzheimer's Disease (33.3%), and inability to care for the husband/wife athome (14.3%). Other diagnoses included cancer, status epilepticus, dementia, andpost hip-fracture, and Huntington's Chorea. One respondent was particularly directin his assessment of his wife's medical condition. This gentleman wrote of his wifethat "she lost her mind... .1 saw her brain, was X rayed and I saw it". Anotherrespondent stated that:"My wife was diagnosed as having Huntington's corea (sic). It is aprogressive neurological disorder and it just became too difficult to carefor her at home. She is now completely bed ridden and is dependent onsomeone for all her needs. I visit 4 times a week and get my wife upin a recliner. I feed her lunch on the days I visit. I spend 4 1/2 hourswith her and try and get her outside, when possible, or to any eventsthat might be taking place."The residents' length of stay ranged from 6.5 months to 7 years. Assistancerequired included feeding, dressing, help to get up, and toileting. Many of therespondents wrote "total care" and one wrote "almost everything" in relation toactivities of daily living.49As noted in the literature, the early symptoms of dementia which ofteninclude sleep and mood disorders, agitation, paranoia, and belligerence to later stagesof profound cognitive and motor impairment, spouses frequently experience a loss ofcontrol over the major segments of their husbands/wives' behaviour (Mace & Rabins,1981). These deficits in cognitive functioning, together with the spouses' own agingprocess and attendant changes, frequently necessitate admission to a care facility(Brody et al., 1978; Pa!more, 1976; Townsend, 1965). Spouses found that theywere no longer able to provide the major assistance required by the cognitively-impaired such as dressing, bathing, and toileting (Cox et al., 1991; Crossman et al.,1981; Fitting et al, 1986; George & Gwyther, 1986; Getze1,1982; Golander, 1987;Pagel et al., 1985; Reisberg, 1986; Stephens et al, 1991; York & Calsyn, 1977; Zaritet., 1980; Zarit et al., 1986).Profile Analysis of the Differences Between Means of the Perceptions and expectationsThe responses to the 34 statements on the two questionnaires differ acrossitems. The grand means for perceptions and expectations are 5.16 and 6.24respectively, with a mean difference of -1.08. However, there is one commoncharacteristic: the expectation scores consistently exceed the perception scores,sometimes notably and on other occasions only a 0.1 difference sets perception andexpectation apart. This is found in statement 3 (Talked to each other in English andnot in their native language, in my spouse's presence). Because the parallelism is soirregular, for example between statements 3, 14, and 22 of perceptions (Figure 1),the summary statistics reveal an interaction effect, that is, the two variables,perceptions and expectations may be related in some way. As shown by statement14 (Called my spouse by his/her name), there was a visible graphic interaction effect50since perception and expectation intersect each other. This was the only incidencewhere the value for perception exceeded that of expectation. From the context ofthe research problem, the likelihood of an interaction effect between perceptions andexpectations is highly plausible. The ravages of cognitive impairment and itssequelae on the elderly person, the stress and burden faced by the spouse-caregiver,the associated guilt and anxiety of admission, and the negative effects of institutionalcare, are all factors that may well have influence on the perceptions andexpectations of nursing care delivery. With Statement 14 (Called my spouse byhis/her name), the reverse was true: The perceptions exceeded the expectations. Itmay be that while spouses heard their husbands/wives' names called, conversationmay not have ensued .This is true with the exception of four statements which elicited lowexpectation scores: These are statements 3 (Talked to each other in English and notin their native language, in my spouse's presence), 13 (Allowed choices for myspouse), 16 (Put my spouse first, no matter what else happened), and 22(Volunteered to do "little" things such as bringing my spouse a cup of coffee, sittingwith my spouse, etc.).The reason for the low expectation score for statement 3 is not entirely clearsince speaking the language of the workplace is common courtesy and a show ofrespect for the residents. The relatively high corresponding perception score is alsounclear. It may be that spouses have never heard foreign languages spoken in theirpresence. This statement will be discussed further under the Anticipates subscale.The means and standard deviations for perceptions and expectations are displayed onTable 1.Lr)^MEANS765432S TAT EMENT 2^4^6^10 12 14 16 18 20 22 24 26 28 30 32 34STATEMENT^01 02 03 04 05 00 07 08 09 10 11 12 13 14 16 10 17 18 19 20 21 22 23 24 26 28 27 28 28 30 31 32 33 34EXPECTATIONS N. 23 24 26 20 21 24 24 23 22 24 24 23 19 24 21 23 26 24 25 IV 24 21 22 22 24 23 16 21 21 23 26 20 23 26PERCEPTIONS N.^22 28 24 16 20 29 27 28 24 27 28 24 18 28 23 26 28 28 27 18 27 28 28 21 26 24 18 17 18 28 26 23 28 27Figure 1Graphed Means of Perceptions and Expectations 52Statement 13 (Allowed choices for my spouse) has a mean expectation scoreand a corresponding perception score of 5.58 (N = 19) and 5.00 (N = 16) (Table 1).These scores are low relative to the respective grand means of 6.24 and 5.16.Given that the response rate for expectations was only 19 out of 29, the explanationfor the data could be that while choices have not been perceived as offeredsufficiently to the institutionalized elderly, cognitive impairment may have renderedthis statement inapplicable in some cases. Some residents may have beencognitively-impaired to the extent that they are not able to make choices.Statement 16, (Put my spouse first, no matter what else happened), alsoelicited a low expectation score (mean = 5.52) and a very low perception score(mean =4.28) (Table 1). While physical care of the cognitively-impaired elderly mayhave been relinquished to nursing staff, the literature states that the spouses'continual involvement in the psychosocial realm remains strong (Montgomery, 1982;Smith & Bengtson, 1979; Tobin & Kulys, 1981; York & Calsyn, 1977). Spousesobtain emotional comfort when they assign themselves as the primary caregiver inattending to the residents' psychological nurturing (Bennett, 1980). It may beunrealistic to expect that staff put the institutionalized elderly first, "no matter whathappened". Given the constraints of the workplace, the spouses themselves may bein the best position to fulfil this role. Their responses to this statement may well bereflective of this interpretation.53TABLE 1Central Tendency AnalysisPerceptions and Expectations: The Means and Their Standard DeviationsCoding:Strongly disagree ^ 1Disagree ^ 2Somewhat disagree 3Neither agree nor disagree ^ 4Somewhat agree ^ 5Agree ^ 6Strongly agree 7Standard Deviation (SD)Accessible:Perceptions ExpectationsMean SD Mean SD4. Answered call lights quickly 3.60 1.96 6.45 0.8922.^Did "little" things 3.50 1.68 5.33 1.6525. Checked on spouse frequently 4.44 1.53 6.17 1.1726. Gave treatments on time 5.88 1.23 6.50 2.79Explains and Facilitates:1. Told me of support systems 4.41 2.13 5.83 1.475.^Told spouse in adult language 5.58 1.27 6.40 3.7524.^Explained things to spouse 4.76 1.84 6.17 1.0427. Encouraged spouse to ask questions 4.96 1.25 6.27 1.10Comforts:2.^Provided basic comfort measures 5.62 1.17 6.21 1.226. Talked to spouse 6.07 0.96 6.50 4.6612.^Were patient with spouse 5.67 1.37 6.20 2.8019. Were comforting to spouse 5.30 1.59 6.40 4.7720. Listened to spouse 5.11 1.49 6.39 0.78Anticipates:3.^Talked in English 5.83 1.55 5.84 1.5715.^Anticipated the shock 4.91 1.47 6.43 0.9823. Knew spouse's needs 4.31 1.83 6.04 1.00Trusting Relationship:7.^Talked about disease and treatment 4.85 1.72 6.50 0.788. Did not appear busy or upset 5.29 1.38 6.09 0.959. Introduced themselves to spouse 5.29 1.33 6.41 0.6754TABLE 1 (continued)Perceptions ExpectationsMean SD Mean SD11.^Created a sense of trust 5.18 1.52 6.54 0.7813. Allowed choices 5.00 1.55 5.58 1.4314. Called spouse by name 6.46 0.58 6.33 1.3116.^Put spouse first 4.28 1.70 5.52 1.4421. Knew spouse as a person 5.74 1.23 6.33 0.8731. Were consistent in treat. of spouse 5.46 1.53 6.24 1.0532. Involved spouse in care 5.96 1.55 6.00 0.9234.^Treated spouse as an individual 5.56 1.42 6.60 0.71Monitors and Follows Through:10. Knew when to call doctor 5.41 1.62 6.62 0.5817. Knew how to care for spouse 5.10 1.24 6.28 0.7918.^Gave spouse good physical care 5.48 1.53 6.46 0.8328. Knew how to give shots 5.59 1.18 6.67 0.7329. Made sure procedures were realistic 5.79 1.36 6.52 0.7530. Were professional in appearance 5.31 1.59 5.96 1.4333. Were organized 5.31 1.26 6.39 0.84Statement 22 (Volunteered to do "little" things such as bringing my spouse acup of coffee, sitting with my spouse, etc.) is noteworthy because this statementhas the lowest scores for both perception and expectation. Consistent to thepreceding line of reasoning, doing "little" things might be seen primarily as thespouses' own area of responsibility (Shuttlesworth et al., 1982; York & Calsyn,1977). Or, it may also mean that staff is just not as available as the spouses expectthat they should be for the elderly person.Two statements, 4 and 22, elicited a neutral response, the overall responseto both statements being neither agree nor disagree. This is an interesting finding.Often neutral responses obtained in psychometric research are not really neutral; thatis, neutral responses tend to lean toward some direction, either a yes or no, or agree55or disagree (BoIdt, personal communications, March 17, 1993). When the overallresults of the study have been taken into consideration, the inclination may well beleaning in a negative direction, that is, nursing staff were not able or willing to makesome accommodations for residents under their care.As shown by Table 2, the t values or t-statistics (derived from the t-testformula) indicate that there is a significant difference between perceptions andexpectations across all statements with the exception of statements 26, 29, 28, 14,13, and 3. What this means is that there is a considerable gap between perceptionand expectation levels. In particular, statements 17, 22, 7, 10, 18, 23, 25, and 15are already significant at the 0.000 level (as indicated by *)• These results indicateopposing opinions for perceptions and expectations. Statements 5, 9, 8, 19, 33, 34,16, 6, 20, 27, 32, 21, 24, and 4 are statistically significant at the .01 level (asindicated by bold print). Only statement 31, statistically significant at 0.046(underscored), closely to the level of significance set at .05. All in all, the degree ofcongruency between the aforementioned statements is found to be low. On theother hand, statements 26, 29, 28, 14, 13, and 3 are not statistically different at.05 indicating congruence between perceptions and expectations.TABLE 2T Value Analysis for Each Statement Statement^ t Value^Sig. Level^SubscalePerceptions and expectations significantly different at .0517. Care for spouse^-5.56^0.000*^Monitors22. Do "little" things -5.30 0.000* Accessi.7. Disease & treatment -4.83 0.000* Trusting10. When to call doctor -4.69 0.000* Monitors56TABLE 2 (continued)Statement^t Value^Ski. Level^SubscalePerceptions and expectations significantly different at .0518. Good physical care -4.48 0.000* Monitors23. Knew spouse's needs -4.47 0.000* Anticip.25. Checked on spouse -4.33 0.000* Accessi.15. Anticipated the shock -4.26 0.000* Anticip.5. Adult language -3.69 0.001 Explains9. Introduce themselves -3.60 0.001 Trusting8. Not busy or upset -3.49 0.002 Trusting19. Were comforting -3.47 0.002 Comforts33. Were organized -3.29 0.003 Monitors34. Treat as individual -3.10 0.004 Trusting16. Put spouse first -3.10 0.004 Trusting6. Talked to spouse -3.08 0.005 Comforts20. Listened to spouse -3.00 0.006 Comforts27. Ask questions -2.82 0.009 Explains32. Involvement in care -2.76 0.010 Trusting21. Knew spouse as person -2.72 0.011 Trusting24. Explained things -2.69 0.012 Explains4. Call lights -2.68 0.012 Accessi.2. Comfort measures -2.25 0.032 Comforts1. Support systems -2.34 0.027 Explains30. Professional in appearance -2.20 0.036 Monitors31. Consistent treatment -2.09 0.046 TrustingPerceptions and expectations not significantly different at .0526. Treatments on time -1.84 0.076 Accessi.29. Realistic for spouse -1.28 0.211 Monitors28. How to give shots -1.20 0.240 Monitors14. Called by name -0.88 0.387 Trusting13. Allowed choices -0.21 0.835 Trusting3. Talked in English -0.09 0.930 Anticip.Profile analysis is an application of multivariate analysis of variance(MANOVA) in which two or more dependent variables are measured on the same57scale (Tabachnick & FideII, 1983). The major inquiry addressed by profile analysisusing the Hotellings Test is whether or not profiles of groups differ on a set ofmeasures, in this case, the spouses' perceptions and expectations (Tabachnick &Fidel!, 1983).According to the Hotellings Test, the profiles are not parallel since the F-statistic (derived from the one-way analysis of variance) is tenable at .002 (Table 3).What this means is that since the F value is already tenable at .002; at .05, thisvalue is also tenable. Therefore, parallelism is rejected at the .05 level ofsignificance. The perceptions and expectations may be similar, but the meansegments are not parallel. In other words, there is a group interaction effectbetween the perceptions and expectations. As previously discussed, the meansbetween perceptions and expectations do not intersect except for one point in thegraph (Figure 1). In statement 14, the perception actually exceed the expectation.The result of non-parallelism is reasonable.TABLE 3Test For Parallelism Multivariate Test of SignificanceAnalysis of Variance for Perceptions and ExpectationsTest^Value^Exact F^Hvooth. DF^Error DF^Sign. of FHotellings^.55686^4.26926^6.00^46.00^.002**Significant at .05Perceptions and expectations are non-parallel.58Given that parallelism is rejected, a group response interaction effect ispresent and further testing of coincidence and flatness of profiles no longer hasmeaning (Morrison, 1976). Since line segments are not parallel, they will neither beat the same level nor will the means be uniform. As noted on Table 4 below, theperceptions and expectations are significantly different from each other for all sixsubscales with the significance of the F-statistic ranging from .000 to .002. Thenext section addresses the mean profiles by subscales beginning with the Accessiblesubscale.TABLE 4Profile Analysis of the Subscales Variable^ Significance of the F-statisticAccessible .000*Explains and Facilitates^ .001*Comforts^ .002*Anticipates .002*Trusting Relationship^ .000*Monitors and Follows Through^.000**Perceptions and expectations are significantly different at .05Profile Analysis of the SubscalesAccessibleThe significance of the F-statistic is .000 (Table 4) for this subscale and themeans are 4.52 and 6.41 respectively for the perceptions and expectations (Table 5).Of the four statements found in this subscale, the variability of the scores betweenperceptions and expectations is very wide for statement 4 (Answered my spouse'scall light quickly.) and statement 22 (Volunteered to do "little" things such asbringing my spouse a cup of coffee, sitting with my spouse); the mean difference is2.85 for statement 4 and 1.83 for statement 22. Because the response rate forstatement 4 is small (N =15), the power of the MANOVA test is decreased. Thereare two possible explanations for the results. A number of residents may not be ableto use call bells due to profound cognitive and motor impairments (Pagel et al.,1985). Although the standard deviation was high at 1.96, spouses who respondedto this statement generally disagreed with it. In this respect, the responses wereconsistent across subjects. The mean scores on statements 4 and 22 (2.85 and1.83) represent the largest differences between perceptions and expectations.These findings are so incongruent that they can be construed not only asdissatisfaction with care provided but also as failings in nursing service delivery.59TABLE 5Profile Analysis of Perceptions and ExpectationsCell MeansSubscalePerceptionMEANSN Expectation MeanDifferenceAccessible 4.52 25 6.41 -1.89Explains and Facilitates 4.95 24 6.50 -1.55Comforts 5.63 26 6.61 -0.98Anticipates 5.02 25 6.30 -1.28Trusting Relationship 5.34 26 6.48 -1.14Monitors and Follows Through 5.38 25 6.60 -1.22Standard Deviation Between SubscalesSubscale: PerceptionSD^SEExpectationSD^SE 2-tail Prob.Accessible 1.28 .257 1.06 .214 0.00*Explains & Facilitates 1.40 .285 0.88 .181 0.00*Comforts 0.98 .191 0.68 .132 0.00*Anticipates 1.31 .262 0.69 .139 0.00*Trusting Relationship 0.95 .186 0.79 .155 0.00*Monitors & Follows Through 0.82 .165 0.68 .136 0.00**Significant at .05Standard Deviation (SD)Standard Error (SE)Probability (Prob.)60N =MEAN76543220 21 24 2361Statement 26 (Gave my spouse's medications or treatments on time) wasbetter received. The mean difference was 0.64. However, this statement has aninstrumental overtone. Being available to respond to needs is a critical responsibilityin the care of the demented resident since the cognitively-impaired elderly cannotmake their needs known. This concern is supported by the responses to statement25: the spouses did not agree that their institutionalized elderly were checkedfrequently. Again, the gap here is large; the means are 6.17 and 4.44 respectively(Figure 2).STATEMENT 4 22 25 26N = 15 26 25 24Figure 2Graohed Means of the Accessible Subscale 22 15N =^23^21MEAN.76543262Explains and Facilitates The statements within this subscale are descriptive of the communicativetransaction of the conceptual framework. They relate to the understanding oftreatments and routines pertaining to care delivery (Bloom, 1963; Petersen, 1989).Figure 3 shows that the gap in the mean profiles between perceptions andexpectations is considerable, signifying a disagreement between what is perceivedand expected. The significance of the F-statistic at .001 found in Table 4 supportsthis interpretation.STATEMENT 1 5 24 27N= 22 26 21 16Figure 3Graphed Means of the Explains and Facilitates Subscale Strong feelings of inadequate communication flow between spouses andstaff, pertaining to the availability of support groups for the families of the63cognitively-impaired, is noted from the data. Further, in light of the low perceptionscores ( 4.41, 5.58, 4.76, and 4.69, Figure 3), and the correspondingly higherexpectation scores (5.83, 6.42, 6.14, and 6.27, Figure 3) the results may indicatethat the presence of impaired mental function should not preclude the nurse fromrespectful communication with the resident. The importance of communication as atherapeutic instrument is supported by a study conducted by Hamilton (1989) whichsuggested that the single most critical indicator of care quality was the one-to-oneinteraction between the nurse and the cognitively-impaired resident.ComfortsOverall, the mean difference between perceptions and expectations in thissubscale is consistently small, ranging from a mean of 5.11 (lowest perception score)to a mean of 6.54 (highest expectation score) (Figure 4). The standard deviationscores are .98 and .68 respectively for perceptions and expectations which isindicative of a consistent opinion across subjects (Table 5). Because the standarderror is .19, there is very little sampling error (Table 5). Therefore, the perceptionsand the expectations can be said to be the most congruent among these subscales.This finding is also supported by the mean difference of -.98, the smallest differencefound of the six subscales (Table 5).The residents are physically provided for in terms of appropriate lighting,control of noise in the environment, and the provision of blankets. Nurses talked toresidents and were patient with the cognitively-impaired resident even when difficultbehaviours were encountered. According to the literature, these behaviours mayinclude: verbal or physical aggression directed to caregivers, resistance to care,64emotional lability and other behavioral disturbances (Harvis, 1990; Hutner Winograd& Jarvik, 1986; Minister of National Health and Welfare, 1984; Reisberg, 1986).The spouses, however, only somewhat agreed that nursing staff werecomforting to residents (statement 19). The means for the perception and theexpectation were 6.44 and 5.30 respectively (Figure 4). The difference between themeans increased when spouses also somewhat agreed that nursing staff listened tothe resident. The means were 8.38 and 5.11 for the perception and the expectation.These findings suggest that institutions may be staffed by personnel ill-equipped tolook after the cognitively-impaired resident (Hasselkus, 1988). Nursing staff,especially patient care aides, may lack the skill to carry through the expressive andcommunicative aspects of nursing care delivery, in particular, the demonstration ofpsychological comfort to the elderly with dementia. It may have been easier fornursing staff to distance themselves rather than make sense of the behaviours of thecognitively-impaired (Hasselkus, 1988).With the exception of statements 19 and 20, the other three line segments inthis subscale would have been equally parallel (Figure 4).65N=^24^24^23^25^18STATEMENT 2 6 12 19 20N= 26 29 24 27 18Figure 4Graphed Means of the Comforts Subscale Anticipates This subscale contains only three statements. The mean differences amongthe three border on extremes, as illustrated by Figure 5.EXPECTATIONSPERCEPTIONSN= 25 21 1566MEAN765492STATEMENT 3 5 23N= 24 23 26Figure 5.Graphed Means of the Anticipates Subscale There is little difference between the perceptions and expectations forstatement 3 (Talked to each other in English and not in their native language, in myspouse's presence). The expectation for staff to speak English in the residents'presence was low compared to most other items. One explanation could be thatsince many of the non-professional staff are visible minorities, spouses may feel thatit could be reasonable to hear foreign languages spoken. Graphically, if the proximityof the line segments were any closer, there would have been a visible interactioneffect since the difference between perception and expectation is only 0.1 (Figure 5).Since the perception and the expectation means (5.84 and 5.83) match almostperfectly, this result represents a deviation from the usual pattern of responses67found. The difference is generally greater among other items. Consequently,interpretation of this finding is difficult. There are several speculations, however.The spouses may have heard only English spoken; they may have elected to believethat only English is spoken; or the spouses may have guessed according to their ownexpectations. It would seem that the response to this statement is positive, whetherit reflects reality is uncertain.On the other hand, for statements 15 (Anticipated the shock over myspouse's disease progression and planned opportunities, individually or as a group, totalk about it) and 23 (Knew my spouse's needs without my spouse having to ask,offering pain medication, toileting, etc.), the differences between the means are verywide, 1.24 and 1.73 respectively. This indicates a concern that nursing staff'santicipatory care may be inadequate for the cognitively-impaired population that isnot able to indicate its needs. Nursing staff may be required to provide for residentswithout the luxury of cues. Bowers (1987), using a grounded theory approach to thestudy of the caregiving experience, found that anticipatory caregiving was regardedas vital even after institutionalization of the elderly family member. Nursing staff'sability to anticipate needs of residents so that the residents' biological and emotionalneeds are satisfied without undue discomfort and delay may be viewed even moreimportantly than the actual task itself.Trusting RelationshipThis subscale is the embodiment of the interrelated concerns that residents inlong term care institutions must cope with: maintaining a sense of mastery, control,and self identity, and most critically, the feeling of being cared for as described by68Golander (1987), Hamilton (1989), Higgins Vogel (1991), Mayer (1987), Larson(1987, 1986, 1984), Larson & Dodd (1991), Larson & Ferketich, (1989). As, shownin Figure 6, the mean vectors are varied between perceptions and expectations,indicating that the opinions are divergent and varied across subjects.Some statements were congruent while others were not. In fact, forstatement 14 (Called my spouse by his/her name), the perception mean exceeded theexpectation mean (6.46 and 6.33). As a result, non-parallelism is substantiatedgraphically here by the overlap of means for perception and expectation. By callingthe institutionalized elderly by name and allowing choices, nursing staff acknowledgethe institutionalized elderly's personhood and need for self identity.N^24 23 22 24 19 24 23 24 25^20 25S TATE M E FIT^8^11^13^14^16^21^31^32^34N 27 28 24 28 16 28 25 27 26 23 27Figure 6Graphed Means of the Trusting Relationship Subscale 69These findings demonstrate that there is little incongruency between theperceptions and expectations in these two areas of caring behaviour. Further,spouses perceived the nursing staff's involvement in the care of the elderly person.For these three statements, the responses were unanimously positive across subjectsin both perceptions and expectations. This finding is supported by a studyconducted by Langer and Rodin (1976). These authors found that residents whowere encouraged to take responsibility in their daily activities showed a significantimprovement in their well-being and behavioral measures. Chang (1978), Pohl andFuller (1980), and Moos (1981) attributed increased morale, independence, andsocial functioning to the interactive effect of choice and perceived situational controlby residents. From the responses generated, the spouses appeared positive in theirperception of care pertaining to the promotion of autonomy of their institutionalizedspouse.On the other hand, spouses felt that nursing staff did not know theirinstitutionalized elderly as persons and did not create a sense of trust for the couple.Spouses also felt that nursing staff did not talk to them about the institutionalizedelderly's disease and treatments and did not put the elderly person first, no matterwhat happens. As noted by Brown (1982), recognizing individuality, reassuringpresence, spending time with, providing information, and showing positive regardexpresses the sentiment that I really care for you (Burgener & Barton, 1991). Theseare essential themes underlying the notion of caring behaviours found in the nurse-patient relationship.70All the statements in this subscale addressed the concept of caring as well assome elements within the communicative and expressive transactions of the TotalTransactional System.Monitors and Follows ThroughThis subscale pertains almost exclusively to the instrumental transaction ofthe therapeutic relationship, in particular, the knowledge, skill, and technicalperformance of the registered nurse. The perceptions and expectations were not ascongruent as was anticipated across items associated with the care fromprofessional staff. The spouses were not sure whether the registered nurse knewwhen to call the doctor (statement 10) nor were they certain that professional staffmade sure others knew how to care for their spouses (statement 17). Means for theperceptions and expectations were 5.22 and 6.62 (mean difference of 1.40); and5.00 and 6.28 (mean difference of 1.28) for statements 10 and 17 respectively(Figure 7).Statement 18, however, which pertained solely to patient care aide staff(Gave my spouse good physical care), was also not well received, the means being5.39 and 6.46 (mean difference of 1.07) for perception and expectation. Spousesdid not feel that good physical care was delivered to the institutionalized elderly. Asdiscussed in the Trusting Relationship subscale, the expressive treatment of thecognitively-impaired elderly requires knowledge, skills, and expertise. The properadministration of the instrumental aspect of care, especially physical care, should betaken for granted. For this reason alone, the above finding is alarming. If visible careis not being carried out properly, very good holistic care of the individual might bethat much more difficult to attain.71What is disturbing also is that spouses did not express approval of theprofessional appearance of staff nor did they feel that staff was organized. Overall,both descriptive and inferential statistical findings, that is, the means and theprofiles, were found to be very supportive of the claims made for this subscale: Thespouses found the technical aspect of care less than it should be.N = 24^25^24^21^23^23MEAN765432STATEMENT 10 17 18 29 30 33N=^27 28 28 19 26 26Figure 7Graphed Means of the Monitors and Follows Through Subscale 72General Discussion of the Data FindingsThe spouses' perceptions and expectations, as measured by the CaringAssessment Instrument, the Care-Q II, are significantly different. Because the overallmean difference between perceptions and expectations is large, this means that thespouses "somewhat agreed" across the 34 statements in terms of the perceptions,while they "agreed" in their expectations. Therefore, the spouses' expectations ofnursing care were higher than what they saw being delivered in the institution.Most notable are the consistently large mean difference and standarddeviation found in the Accessible, Explains and Facilitates, and Anticipates subscalesbetween perceptions and expectations; these three subscales represent the biggestareas of concern (Table 5). However, expectations tend to be set higher to beginwith so that such a finding cannot be consider a major deviation, nor can it beconsidered a particularly alarming disagreement with the expectation of nursing care.As noted on Table 2, the means of the perceptions were not uniform, which may beindicative of the mixed feelings felt about the manner of nursing care received by theinstitutionalized elderly.The overall findings from this study are now considered in relation to theconceptual framework: the instrumental, expressive, and communicativecomponents of the Total Transactional System (Bloom, 1963; Petersen, 1989).The Instrumental Transaction When the statements applicable to this transaction and the Monitors andFollows Through subscale were taken into consideration, the results indicated thatthe spouses had concerns regarding the technical aspect of care delivery. The73concern over quality in physical care was strongly apparent while the concern withthe activities of professional staff appeared peripheral in comparison. There mighthave been some question regarding nursing staff's ability to deliver an optimal levelof nursing care, and the actual care delivery itself, as well as the availability of staffwhen assistance was needed to address basic needs and activities of daily living(Bloom, 1963). These findings are consistent with families' concerns that facilitiesmay be staffed by improperly trained nursing personnel (Chenoweth & Spencer,1986; Hasselkus, 1988; Huss et al.,1988). These personnel may have beenprofessional or non-professional staff.The Expressive TransactionAccording to Bloom (1963), the expressive transaction pertains to theinterpersonal component between the nurse and the patient. Essentially, thiscomponent addresses the personhood of the cognitively-impaired elderly. For theelderly person who has difficulty relating to the environment and his/her spouse, thiscomponent is crucial. Of most concern is the finding that spouses did not feel thatstaff knew the resident as a person. Since the cognitively-impaired elderly person iscommunicatively disabled, positive interaction requires purposeful strategies. Theresponses indicate some perceived difficulties with the availability of skilfulinterventions required to foster therapeutic communications and positive feelings forresidents who are impaired (Chenoweth & Spencer, 1986; Golander, 1987).According to Hamilton (1989), the single most critical indicator of care quality is theinteraction between the nurse and the cognitively-impaired. Knowing theinstitutionalized elderly as persons and showing an appreciation of their situation are74behaviours that demonstrate a caring attitude congruent with acceptable nursing carequality. While the quality of physical care is important, spouses appear to haveemphasized the psychosocial needs of residents since many more variabilities werefound in the trusting relationship subscale. The notion of emotional comfort,anticipatory regard, trust, and respect for the essence of a person, despite the extentof cognitive impairment, appeared critical to spouses of the institutionalized elderly.Golender (1987) and Huss et al. (1988) asserted that positive treatment made thedifference between a sense of life satisfaction or the depersonalization of theindividual with the prospect of further impairment and helplessness for theinstitutionalized elderly.The Communicative Transaction Petersen (1989) identified the following descriptors related to thecommunicative transaction:-Being listened to-Being informed about what will happen-Feeling more in control-Decreasing stress-Understanding treatment and unit routines.Of these descriptors, being listened to, being informed about what willhappen, and understanding treatment and unit routines were concepts captured inthe research instrument. The results indicated a discrepancy between the spouses'perceptions and expectations in regards to the quantity and quality of communicationflow between the residents and staff as well as between the families and staff.Although residents were called by name more often than expected, the factthat they were not listened to but talked to may be indicative of distancing and75avoidance behaviour toward the elderly who were not cognitively conversant.According to Cox et al. (1991), excessive infantilization, including paternalization,leads to learned helplessness and a perceived lack of control and autonomy withfurther disability. In turn, spouses thought that their own feelings pertaining to theirinstitutionalized elderly's disease and treatment had not been addressed adequately.Spouses appeared to be in need of additional information pertaining to the course ofa dementing illness. The stresses associated with the institutionalized elderly'sdisease progression and direction of treatment were likely to continue and may evenbecome intensified with facility care (George & Gwyther, 1984; Pagel et al., 1985).The spouses' need to be informed was critical to the notion of meeting theexpressive and communicative needs of residents and families. As noted by Fenglerand Goodrich (1979), spouses as caregivers, required help and support as much astheir disabled family member.Summary The results revealed that there is a statistically significant difference betweenthe spouses' perceptions and expectations of selected activities of nursing caredelivered to the cognitively-impaired institutionalized elderly. Comparisons of thesubscale means indicated that the spouses' expectations consistently exceeded theirperceptions in each of the six subscales including Accessible, Explains andFacilitates, Comforts, Anticipates, Trusting Relationship, and Monitors and FollowsThrough.Of the identified areas of concern within the Instrumental component of theconceptual framework is a perceived deficit in the delivery of physical care and thelimited access of nursing personnel. For the expressive component, the concepts of76personhood, individuality, anticipation, trust, and caring within the interactionarynurse-resident relationship could be more congruent with the spouses' expectations.The scope and quality of information flow were also deemed less than what wasperceived adequate within the communicative component. On the other hand,nursing staff was acknowledged for comforting the institutionalized elderly,sometimes by allowing choices, other times by being patient even when the impairedelderly person was difficult.77CHAPTER FIVESummary. Conclusions. Implicationsand Recommendations for Future Research SummaryThe aging of the Canadian population has implications pertaining to theinstitutional care of the elderly. The possibility of cognitive impairment increaseswith age and cognitive impairment is associated with institutionalization of theelderly. Cognitive impairment affects an individual's information processing abilities.Consequently, the elderly person requires much assistance with activities of dailyliving. His or her spouse is often the most common caregiver. Spouses, who areoften elderly themselves, may also suffer from age-related changes. Othersuperimposing factors are the stresses and burdens associated with around-the-clockcare. In many instances, the spouses find no recourse but to eventuallyinstitutionalize the husband/wife who is cognitively-impaired.Institutionalization is associated with regimented care and its negative effectsinclude helplessness and depersonalization of the individual. As recipients ofinstitutional nursing care, residents may have perceptions and expectations of thatcare. Since cognitive impairment prevents the institutionalized elderly from providingthat information, the spouses who are also advocates for the resident, are in aunique position to shed light on the state of nursing care delivery.The concept of caring is inherent to the quality of nursing care delivered.Caring has been described as the intentional actions and attitudes that conveyedphysical care, emotional concern, and warm regard for another (Larson & Dodd,1991). Within this context, nursing care activities are conceptualized in terms of a78Total Transactional System, identifying three components within the nurse-patientrelationship (Bloom, 1963; Petersen, 1989). This system consists of theinstrumental, expressive, and communicative transactions of nursing care delivery.These transactions pertain to the technical, affective, and informative components ofcaring for the cognitively-impaired elderly (Bloom, 1963; Petersen, 1989).The study method was a comparative descriptive survey design using apurposive sampling technique. Twenty-nine spouses, whose cognitively-impairedelderly husband/wife has resided in an institution for six months or more comprisedthe sample. The subjects were drawn from two large multi-site tertiary carehospitals in Vancouver. The subjects ranged in age from 62-92 years with the meanage of 78.7 years.The subjects completed a self-administered, modified Care-Q II Questionnairethat consisted of 34 questions, repeated twice, to elicit the spouses' perceptions andexpectations of selected aspects of nursing care activities (Larson, 1984). Theresponses were recorded using a seven-point Likert scale.Because the responses to the questionnaire were commensurable, that is, theresponses were measured on the same scale, a profile analysis was used to ascertainthe difference between the perceptions and expectations. This MANOVA techniqueof profile analysis was presented graphically as well as statistically. Descriptivestatistics were also used to assist in the interpretation of the spouses' perceptionsand expectations according to the six subscales.In terms of the Accessible subscale, there were significant irregularities.There were extremes in the data set between perceptions and expectations to thepoint that a result of non-parallelism of profiles was demonstrated. Three out of the79four statements in the subscale elicited a common negative response acrosssubjects. Although the fourth statement was favourable for a majority of residentswho require anticipatory assistance, the perceived lack of availability of nursing staffis a serious concern. The spouses' own caregiving experiences may have aggravatedtheir perceptions of the care rendered.A parallelism of profiles was shown in the Explains and Facilitates subscale.Although there is an element of non-applicability for two of the four statements interms of how much the cognitively-impaired can communicate, the gap betweenperceptions and expectations overall is too large to be ignored. Some dissatisfactionwith the dissemination of information to both the institutionalized elderly and spouseis indicated. The results demonstrate that nurses should continue to interact withresidents in the usual manner regardless of the degree of cognitive impairment.Overall, subjects responded most positively on the Comforts subscale. Asense that nursing staff made attempts to physically and emotionally comfortresidents was apparent here. Whether staff were actually successful in "comforting"their residents in the manner that addressed the residents' need for comprehensiverespectful treatment was somewhat less certain. The notion that nursing staff iswell-meaning but ill equipped to communicate effectively with the cognitively-impaired has been suggested by the findings. Most disturbing is the finding thatspouses only somewhat agree that their institutionalized husband/wife is listened to.However, nurses demonstrated patience with difficult residents.Similarly, in the Accessible subscale, the spouses appeared dissatisfied withthe anticipatory treatment of residents. Unlike other patient populations, cognitively-80impaired residents rely heavily on nursing staff for a majority of their care needs.Incongruence in this subscale can be construed as a failure in nursing care delivery.The Trusting Relationship subscale is associated with the caring concept andthe manner this attribute is conveyed to the elderly resident through purposefulmediated actions. Nursing staff was perceived as having difficulties in both theexpressive and communicative components of the nurse-patient relationship.Specifically, communication regarding the resident's disease and treatment,recognition of individuality, spending time with, and showing positive regard have notbeen adequately established. The Monitors and Follows Through subscale clearlydescribes the instrumental component of nursing care delivery. Spousesoverwhelmingly acknowledged the technical competence of professional staff whilethey questioned the physical care rendered.The results of this study demonstrate that there was a discernable differencebetween the two dependent variables, perceptions and expectations. Although thedifference cannot be construed as being highly incongruent, nonetheless the gapexisted. The spouses' own experiences with caregiving, cognitive impairment, andthe nature of institutionalization accounted for the group response interaction effect,so that each statement cannot be discussed in isolation, in terms of just theperceptions or just the expectations. Moreover, the statements within each subscalecan be applied to a number of subscales so that an interpretation of main effectspertaining to each item and to each subscale is impossible. For example, "Gave myspouse's medications or treatments on time" would be appropriate if found under theMonitors and Follows Through subscale as well as the Accessible subscale.81ConclusionsThe following conclusions have been drawn from the findings of the study:1. Spouses' expectations of nursing care are higher than their perceptions of thenursing care actually delivered.2. Nurses demonstrated patience with difficult residents.3. Spouses perceive that nursing staff do not consistently achieve the goal ofmeeting the communicative and emotional needs of residents.4. Nurses are not available when needed and they do not anticipate residents'needs to the extent perceived necessary by the spouses.5.^Provision of physical care is below the spouses' expectations.ImplicationsWhere perceptions and expectations are concerned, it is highly unlikely thatperceptions ever live up to expectations. However, because perceptions aredelineated below expectations, it will be necessary to narrow the gap not only toimprove care but also to meet the expectations of care recipients. Otherwiseenormous difficulties including dissatisfaction with nursing care quality may ensuewith serious consequences, for example, unsolicited communications from residentsand family members to institutional administrators and the involvement of the mediaand Ministry of Health. Similarly, the displeasure with physical care is another majorfinding from this study. Considering that basic nursing is fundamental to long termcare, dissatisfaction necessarily calls for new insights and perspectives pertaining tonursing education, practice, and administration in the nursing care of the cognitively-impaired elderly.82Nursing EducationThe fact that the perceptions of nursing care are not what the spouses feelthey ought to be can be appreciated if the prevalence and scope of cognitiveimpairment as a chronic illness and its impact on the individual and on intimate familymembers are better understood. Deficits in the cognitive domain require special skillsin communication, such as active listening, patience, and the ability to enter theworld of the cognitively-impaired, even if momentarily. On occasion, nursing staffmay refrain from conversing with the cognitively-impaired or ignore them altogetherbecause the individual is unable to interpret or recall what has been said to him/her.Or, staff might "talk down" to the individual in an attempt to be personable or to givedirections in a simple manner. Although these gestures are generally well-meaning,these behaviours are frequently construed by family members as thoughtless and"uncaring".Nursing curricula for professional and non-professional staff shouldencompass theory on the manifestations and implications of cognitive impairmentand the associated disease processes such as Alzheimer's Disease and CVA.Nursing staff should be instructed on ways to effectively and sensitively approachand care for residents with cognitive impairment, including techniques to accessabilities as well as disabilities. Nurses should be well aware of the underlyingetiology of certain behaviours in order to address them in a way conducive toimproving life satisfaction of the elderly living in a long term care facility. Forexample, individuals afflicted by CVAs often have cognitive impairment which maybe manifested by disinhibited behaviour such as verbal or physical abuse towardstaff.83Nursing Practice The quality of care provided to the institutionalized elderly is a critical issue(Roberts, LeSage, & Radtke Ellor, 1987). According to Connington and Dupuis(1990), quality is a relative measure so therefore, its nature is contextual. A well-developed quality management program may assist in operationally definingstandards of care or expected resident outcomes, and standards of practice ormanner of nursing care delivery (Connington & Dupuis, 1990). Scope of care andmajor clinical functions performed by nurses need to be formulated so that they canserve as resident and practitioner frameworks in care delivery within the evaluativeprocess. The scope of care identifies and defines the resident population and thetype of services required (Connington & Dupuis, 1990). Consequently, aggregatecare quality as well as the accountability and compliance of the individual nurse withrespect to continuous improvement initiatives could be addressed. An example ofsuch a program would be a unit-based type quality management structure, process,and outcome model.Nursing care of the cognitively-impaired institutionalized elderly must beviewed from a physical and psychosocial perspective, these two attributes areequally important. To this end, the finding that physical care is incongruent withexpectations warrants a critical review of nursing practice issues pertaining to basicnursing care delivery. Practitioners must meet acceptable standards in the deliveryof basic nursing techniques including skin care and oral hygiene. Certifyingcompetencies pivotal to the care of the cognitively-impaired elderly such as turning,positioning, and transfer techniques, and the incorporation of a continence protocol,84may also be helpful. Psychosocial issues may include quality of life concerns andresidents and families' rights and responsibilities within the institutional setting.Interpersonal skills such as those pertaining to the supervision of ancillarystaff and the ability to communicate with the cognitively-impaired person can bedealt with from a motivational as well as from an educational level. For example,skills in reminiscence and validation may be useful in tapping into the world of thecognitively-impaired elderly.Nursing AdministrationWhen there is a discrepancy between perceptions and expectations ofnursing care, the problem of limited resources is likely to be at the forefront ofdiscussion. The funding of 2.5 nursing care hours for each long term care resident isinadequate in view of the extent of disability accompanying cognitive impairment.Moreover, many long term care units are attached to, and administered by, acutecare hospitals. Funding for long term care may be part of the global hospital budget.Even as the acuity and average care levels rise, "the units' resources and the qualityof nursing care available depend on the importance the acute care hospital places onlong term care" (Seaton et al., 1991, p. C-166). Long term care special units andmulti-level service units will also increase costs. The implementation of a workloadmeasurement system within the institution would assist in obtaining data to lobbyfunding agencies to increase financial resources allocated to long term care. Thesuccess of such an endeavour would have long term implications in the quality ofnursing care for the elderly since cognitive impairment is associated with increasedfacility care (Canadian Task Force on the Periodic Health Examination, 1991).85At the service level, the mix of nursing personnel and the nursing caredelivery system may be factors to explore administratively. Presently, long term carefacilities are staffed by a large patient care aide staff and a disproportionately smallerregistered nurse staff. A change in the proportion or the use of another category ofstaff such as licensed practical nurses might be another alternative. As asserted inthe recent provincial health care commission report, British Columbia, Canada, themost critical factor influencing quality care delivery is the effective and efficient useof resources (Seaton et al., 1991).The most effective strategy, however, may be the appeal to theprofessionalism of nurses. The fostering of pride in good work ethics, innovations inquality management, altruistic/ethical behaviours with respect to the treatment ofpersons, and the need to care and nurture are traits essential to nursing care quality.In the final analysis, systems may support the structure of care delivery, but it is thepeople who will make the difference.Limitations of the StudyThe following difficulties were encountered in the course of conducting thisstudy. The use of a modified instrument originally designed for another subjectpopulation may not capture identically the constructs of interest, that is, the selectednursing care activities associated with the care of cognitively-impaired elderly. Forexample, "knew when to call the doctor" may not be totally applicable since spousesmay only learn of this activity indirectly. Spouses do not really know exactly whenthe nurse calls the doctor. This concern also has an impact on the validity andreliability of the instrument since the response to this question is likely based on86subjective judgement unsupported by knowledge. Furthermore, any manipulation ofa tool will only have an adverse effect on the credibility of the claims. A Cronbach'sAlpha would have assisted in the refinement of the Care-Q II and the effect suchrevisions might have on reliability. Finally, response bias from certain spousalsubjects is a distinct possibility.Recommendations for Future Research In view of the divergent meanings generated by some of the statements,research using a Q-Sort methodology to capture the nursing care activities of interestin the care of the cognitively-impaired institutionalized elderly is warranted. From theconstructs found using Q-Sort, the present study could be replicated using thenursing care activities of interest to define the quality care concept. In the process,many "not applicable" responses could be eliminated.A study centred on the relationship of family caregiving to health care usageby the elderly could be conducted. Bowers (1987) found that anticipatorycaregiving, that is, decision-making based on anticipated possibilities, was within theinvisible world of the caregiving experience. From a later study, Bowers (1988)confirmed the belief by family caregivers that institutional staff did not haveadequate skills or background knowledge to carry out care. Families perceived thatgood quality care in an institution was largely dependent on family participation andinput (Bowers, 1988; Johnson et al., 1992). The need for family caregivers to teachstaff how to provide protective care such as the promotion of self image wasdeemed necessary (Bowers, 1988). Ethnographic interviews could be conducted toelicit data on the meaning of the caregiving experience. The information gained may87assist professional caregivers to gain insight and understanding into the family'sperceptions and expectations. In a study conducted by Miller (1987) to examine therelationship between caregiver gender and caregiving experience, the author foundthat female spouses tended to focus on the changing relationship brought about bythe elderly person's infirmities while men focused on caregiver tasks and projects.With the growing demand of the public to have a voice in health caredelivery, a study using a qualitative methodology, focusing on the physical careneeds of the cognitively-impaired institutionalized elderly could be conducted from afamilial viewpoint to ascertain which aspects of the physical care component areproblematic. The same study may be replicated from the perspective of thepractitioner.A study capturing the critical aspects of the nurse-resident-familyinteractional relationship, specifically with a focus on the imparting of informationand the demonstration of the caring attribute through mediated actions andbehaviours, is a logical step in light of the results found from this researchendeavour. The expressive and communicative components of the interactionalsystem is consistent with the experiential work of caregiving, even more so thanwith a task-based orientation. Insights indicate more training is required inrecognizing and communicating support for residents and families alike.Improvement in care is contingent on family involvement with residents and staff, aswell as on the quality of staff performance (Johnson et al., 1992). An appropriateresearch methodology might be in the form of a semi-structured interview.Finally, a study could be undertaken to examine ways to increase theresources available in the delivery of nursing care to the cognitively-impaired elderly88in a facility. As mentioned previously, issues such as funding and operationalsupport have a profound impact on how nursing care is administered and generallyperceived.In conclusion, this study has demonstrated that improvement of nursing careto the cognitively-impaired institutionalized elderly should be considered. Nurses, incollaboration with the family, can contribute significantly to the quality of life in longterm care facilities.89REFERENCESArmstrong-Esther, C.A. (1986). The influence of elderly patients' mental impairment onnurse-patient interaction. Journal of Advanced Nursing, it 379-387.Avorn, J., & Langer, E. (1982). Induced disability in nursing home patients: A controlledtrial. Journal of the American Geriatric Society, 30 397-400.Barer, B.M., & Johnson, C.L. (1990). A critique of the caregiver literature. TheGerontologist, 30(1), 26-29.Bennett, C. (1980). Nursing home life: What it is and what it could be. New York:Tiresias Press.Bloom, W. (1963). The doctor and his patient. New York: Free Press.Bowers, B.J. (1988). Family perceptions of nursing home care: A grounded theory studyof family work in a nursing home. The Gerontologist, 28 361-368.Bowers, B.J. (1987). Intergenerational caregiving: Adult caregivers and their agingparents. Advanced Nursing Science, 9 20-31.Bratcher, T.L., Moran, M.A., & Zimmer, W.J. (1970). Tables of sample sizes in theanalysis of variance. Journal of Quality Technology, 2 156-164.Brody, S., Poushock, W., & Mascioschi, F. (1978). The family caring unit: A majorconsideration in the long-term support system. The Gerontologist, 18 556-561.Brown, L. (1982). Behaviours of nurses perceived by hospitalized patients as indicatorsof care. Dissertation Abstracts International, 43 4361B.Burgener, S.C., & Barton, D. (1991). Nursing care of the cognitively impairedinstitutionalized elderly. Journal of Gerontological Nursing, 17(4), 37-43.Burgoon, J.K., & Aho, L. (1982). Violations of conversational distance. Communications Monographs, 49 71-88.Canadian Nurses Association. (1980). Canadian Nurses Association: A definition of practice, standards for nursing practice. Ottawa: Author.Canadian Task Force on the Periodic Health Examination. (1991). Canadian Medical Association Journal, 144(4), 425-431.Caserta, M.S., Lund, D.A., Wright, S.D. & Redburn, D.E. (1987). Caregivers to dementiapatients: The utilization of community services. The Gerontologist, 27 209-214.Chang, B.L. (1978). Generalized expectancy, situational perception, and morale amonginstitutionalized elderly. Nursing Research, 27 316-324.90Chenoweth, B., & Spencer, B. (1986). Dementia: The experience of familycaregivers. The Gerontologist, 26(3), 267-272. Clark, N.M., & Rakowski, W.(1983). Family caregivers of older adults: Improving helping skills. TheGerontologist, 23(6), 637-642.Connington, M.E., & Dupuis, P. (1990). Unit-based nursing quality assurance: A patient-centered approach. Rockville, Maryland: Aspen Publishers.Cox, C.L., Kaeser, L., Montgomery, A.C., & Marion, L.H. (1991). Quality of life nursingcare: An experimental trial in long-term care. Journal of Gerontological Nursing, 17(4), 6-11.Crossman, L., London, C., & Barry, C. (1981). Older women caring for disabledspouses: A model for supportive services. The Gerontologist, 21(5), 464-470.Doering, E.R. (1983). Factors influencing inpatient satisfaction with care. Quality ReviewBulletin 9(10), 291-299.Eck, S.A., Meehan, R.R., Zigmund, D.M., & Pierro, L.M. (1988). Consumerism, nursing,and the reality of the resources. Nursing Administration Quarterly,  12(3), 1-11.Eriksen, L. (1987). Patient satisfaction: An indicator of nursing care quality? NursingManagement, 18(7), 31-35.Evans, D.A., Funkenstein, H., & Albert, M.S. (1989). Prevalence of alzheimer's diseasein a community population of older persons. Journal of the American Medical Association, 262, 2551-2556.Fengler, A, & Goodrich, N. (1979). Wives of elderly disabled men: The hidden patients.The Gerontologist, 19(2), 175-183.Fine, R.B. (1988). Power and the consumer. Nursing Administration Quarterly, 12(3),66-73.Fitting, M., Robins, P., Lucas, M.J., & Eastham, J. (1986). Caregivers for dementiapatients: A comparison of husbands and wives. The Gerontologist, 26 248-252.Ford, M.B. (1981). Nurse professionals and the caring process. Dissertation AbstractsInternational, 36 2652B.Fortinsky, R.H., & Hathaway, T.J. (1990). Information and service needs among activeand former family caregivers of persons with alzheimer's disease. TheGerontologist, 30(5), 604-609.Gal!man, L. (1988). Caring: A concept within nursing. In National League for Nursing.Strategies for Long-Term Care. (pp. 179-189) New York: National League forNursing.Gaut, D. (1984). A theoretic description of caring as action. In M. Leininger (ed.), Care: The essence of nursing and health, (pp. 32). Thorofare, New Jersey: Slack.91George, L.K., & Gwyther, L.P. (1986). Caregiver well-being: A multidimensionalexamination of family caregivers of demented adults. The Gerontologist, 26253-259.Getzel, G.S. (1982). Helping elderly couples in crisis. Social Casework, 63(9), 515-521.Gilhooly, M.L.M. (1986). Senile dementia: Factors associated with caregiver's preferencefor institutional care. British Journal of Medical Psychology, 59, 165-171.Go!ander, H. (1987). Under the guise of passivity. Journal of Gerontological Nursing, 13(2), 26-31.Gottesman, L.E. (1974). Nursing home performance as related to resident traits,ownership, size, and source of payment. American Journal of Public Health, 64269-276.Gustafson, N. (1984). Motivational and historical aspects of care and nursing. In M.Leininger (Ed.). Care: The essence of nursing and health. (pp. 61-73).Thorofare, New Jersey: Slack Incorporated.Hamilton, J. (1989). Comfort and the hospitalized chronically ill. Journal of Gerontological Nursing, 15(4), 28-33.Hanson Frost, M. (1992). Quality: A concept of importance to nursing. Journal of Nursing Care Quality, 7(1), 64-69.Hare!, Z. (1981). Quality of care, congruence and wellbeing among institutionalizedaged. The Gerontologist, 21, 523-531.Harvis, K.A. (1990). Care plan approach to dementia. Geriatric Nursing, 11(2), 76-80.Hasselkus, B.R. (1988). Meaning in family caregiving: Perspectives oncaregiver/professional relationships. The Gerontologist, 28(5), 686-691.Hastings, J.E.F. (1985). Canada's health care system. In Introduction to NursingManagement: Distance Education Program (Ed.). Introduction to nursing management: A Canadian perspective. (pp. 1-38). Ottawa: Canadian HospitalAssociation.Hayter, J. (1982). Helping families of patients with Alzheimer's Disease. Journal of Gerontological Nursing, 8(2), 81-86.Higgins Vogel, C., & Mercier, J. (1991). The effects of institutionalization on nursinghome populations. Journal of Gerontological Nursing, 17(3), 30-34.Hooyman, M., Gonyea, J., & Montgomery, R. (1985). The impact of in-home servicestermination on family caregivers. The Gerontologist, 25 141-145.92Horowitz, A. (1985). Sons and daughters as caregivers to older parents: Differences inrole performance and consequences. The Gerontologist, 25, 612-617.Huss, M.J., Buckwalter, K.C., & Stolley, J. (1988). Nursing's impact on life satisfaction.Journal of Gerontology, 14(5), 31-36.Hutner Winograd, C.H., & Jarvik, L.F. (1986). Physician management of the dementedpatient. The American Geriatric Society, 34(4), 296-308.Institute for Health Care Facilities of the Future. (1990). A view of the horizon: regional trends. Ottawa: Author.Johnson, M.A., Morton, M.K., & Knox, S.M. (1992). The transition to a nursing home:Meeting the family's needs. Geriatric Nursing, 13(6), 299-302.Johnson, M.A., & Werner, C. (1982). 'We had no choice": A study in familial guiltfeelings surrounding nursing home care. Journal of Gerontological Nursing, ft641-654.Klein, R., Dean, A., & Bogdonoff, M. (1967). The impact of illness upon the spouse.Journal of Chronic Disease, 20, 241-248.Langer, E.J., & Rodin, J. (1976). The effects of choice and enhanced personalresponsibility for the aged: Field experiment in an institutional setting. Journal ofSocial Psychology, 4.L 191-198.Larson, P.J. (1984). Important nurse caring behaviours perceived by patients with cancerOncology Nurses' Forum, 11(6),46-50.Larson, P.J. (1986). Cancer nurses' perceptions of caring. Cancer Nursing, 9(2), 86-91.Larson, P.J. (1987). Comparison of cancer patients' and professional nurses'perceptionsof important nurse caring behaviours. Heart and Lung, 16(2), 187-192.Larson, P.J., & Dodd, M.J. (1991). The cancer treatment experience: Family patterns ofcaring. In D.A. Gaut and M.M. Leininger (Eds.). Caring: The compassionate healer. (pp. 61-78). New York: National League for Nursing Press.Larson, P.J., & Ferketich, S. (1989). Patients' satisfaction with nurses' caring duringhospitalization. Privileged Communication. San Francisco: Authors.Lezak, M. (1978). Living with the characterologically altered brain injured patient. Journal of Clinical Psychiatry, 39 592-599.Lord, F.C., & Novick, M.R. (1968). Statistical theories of mental test scores. Reading,Massachusetts: Addison-Wesley.Mathew, L.J., Mattocks, K., & Slatt, L.M. (1990). Exploring the roles of men: Caringfor demented relatives. Journal of Gerontological Nursing, 16(10), 20-25.93Mayer, D.K. (1987). Oncology nurses' versus cancer patients' perceptions of nursecaring behaviours: A replication study. Oncology Nurses' Forum, 14(3), 48-52.Miller, B. (1987). Gender and control among spouses of the cognitively impaired: Aresearch note. The Gerontologist, 27 447-453.Ministry of National Health and Welfare. (1984). Alzheimer's disease: A familyinformational handbook. Ottawa: Author.Ministry of Supply and Services. (1988). 1986 census of Canada: Canada's seniors. Ottawa: Author.Moos, R.H. (1981). Environment choice and control in community care settings forolder people. Journal of Applied Social Psychology, 11(1), 23-43.Montgomery, R.J.V. (1982). Impact of institutional care policies on family integration.The Gerontologist, 22 54-58.Morrison, D.F. (1976). Multivariate statistical methods. (3rd. ed.). San Francisco:McGraw-Hill.Mortimer, J.A., Schuman, L.M., & French, L.F. (1981). Epidemiology of dementingillness. In L.M. Schuman and J.A. Mortimer (Eds.). The Epidemiology ofDementia (pp. 3-23). New York: Oxford University Press.Munro, B.H., Visintainer, M.A., & Page, E.B. (1986).  Statistical methods for health care research. London: J.B. Lippincott Company.Organizing Committee, Canadian Consensus Conference on the Assessment ofDementia. (1991). Assessing dementia: the Canadian consensus. Canadian Medical Association Journal, 144(7), 851-853.Pagel, M.D., Becker, J., & Coppel, D.B. (1985). Loss of control, self-blame, anddepression: An investigation of spouse caregivers of Alzheimer's diseasepatients. Journal of Abnormal Psychology, 94 169-182.Palmore, E.B. (1986). Trends in the health of the aged. The Gerontologist, 26(3), 298-302.Palmore, E.B. (1976). Total chance of institutionalization among the aged. TheGerontologist, 16 504-507.Petersen, M.B.H. (1989). Using patient satisfaction data: An ongoing dialogue to solicitfeedback. Quality Review Bulletin, 15 168-171.Pohl, J.M., & Fuller, S.S. (1980). Perceived choice, social interaction, and dimensions ofmorale of residents in a home for the aged. Nursing in Research and Health,11(1), 23-43.94Pruchno, R.A., & Potashnik, S.L. (1989). Caregiving spouses physical and mental healthin perspective. The American Geriatrics Society, 37(8), 697-705.Reisberg, B. (1986). Dementia: A systematic approach to identifying reversible causes.Geriatrics, 41(4), 30-46.Rempusheski, V.F., Chamberlain, S.L., Picard, H.B., Ruzanski, J., & Collier, M. (1988).Expected and received care:Patient perceptions. Nursing Administration Quarterly, 12(3), 42-50.Riffle, K.L. (1989). Stress: Nurses dealing with family members. Journal of Gerontological Nursing, 15(7), 18-25.Roberts, K.L., LeSage, J., & Radtke Ellor, J. (1987). Quality monitoring in nursing homes.Journal of Gerontological Nursing, 13(10),  34-40.Rohs, G. (1986). A program of activities of daily living for the cognitively impaired.Gerontion 1(1), 22-27.Sainsbury, P., & Grad de Alarcon, J. (1970). The effects of community care on thefamily. Journal of Geriatric Psychiatry, 1 23-31.Sanford, J.R.A. (1975). Tolerance of debility in elderly dependents by supporters athome: Its significance for hospital practice. British Medical Journal, 3 471-473.Schwartz, A.N., & Vogel, M.E. (1990). Nursing home staff and residents' families roleexpectations. The Gerontologist, 30(1), 49-53.Scott, J.P., Roberto, K.A., & Hutton, J.T. (1986). Families of Alzheimer's victims: Familysupport to the caregivers. Journal of the American Geriatric Society, 34, 348-354.Seaton, P.D., Evans, R.G., Ford, M.G., Fyke, K.J., Sinclair, D.R., & Webber, W.A. (1991).Closer to home: The report of the British Columbia royal commission on health care and costs. Victoria: Province of British Columbia.Shanas, E. (1979). The family as a social system in old age. The Gerontologist, 19(2),169-174.Shook, E.J., & Beck, C.M. (1991). Impaired mind vs. impaired body. Geriatric Nursing,12(4), 185-187.Shuttlesworth, G.E., Rubin, A., & Duffy, M. (1982). Families versus institutions:Incongruent role expectations in the nursing home. The Gerontologist, 22(2),200-208.Silliman, R.A., Fletcher, R.H., Earp, J.L. & Wagner, E.H. (1986). Families of elderlystroke patients: Effects of home care. Journal of the American Geriatric Society, 34 643-648.95Skodol Wilson, H. (1987). Introducing research in nursing. Reading, Massachusetts:Addison-Wesley Publishing Company.Smith, K.F., & Bengtson, V.L. (1979). Positive consequences of institutionalization:Solidarity between elderly parents and their middle-aged children. TheGerontologist, 19 438-447.Spitzer, R.B. 0988). Meeting consumer expectations. Nursing Administration Quarterly, 12(3), 30-39.Statistics Canada. (1991). Profile of persons with disabilities residing in .health care institutions in Canada. Ottawa: Author.Stevens, M.A.P., Kinney, J.M., & Ogrocki, P.K. (1991). Stressors and well-being amongcaregivers to older adults with dementia: The in-home versus nursing homeexperience. The Gerontologist, 31(2), 217-223.Stone, R., Caffererata, G.L., & Sangl, J. (1987). Caregivers of the frail elderly: Anational profile. The Gerontologist,  27 616-626.Sullivan, E.J., & Decker, P.J. (1988). Effective management in nursing. (2nd ed.). MenloPark, Califomia:Addison-Wesley Publishing Company.Sussman, M.B. (1976). The family of old people. In R. Binstock and E. Shanas (Eds.).Handbook of aging and the social sciences. (pp. 218-243). New York: VanNostrand Reinhold.Tabachnick, B.G., & FideII, L.S. (1983). Using multivariate statistics. (2nd. ed.). NewYork: Harper & Row.Townsend, P. (1965). The effects of family structure on the likelihood of admissionto an institution in old age. In E. Shanas & G.F. Streib (Eds.). Social structureand the family: Generational relations. Thorofare, New Jersey: Prentice Hall.Tobin, S.S., & Kulys, R. (1981). The family in the institutionalization of the elderly.Journal of Social Issues. 37 145-157.Vinick, B.H. (1984). Elderly men as caretakers of wives. Journal of Geriatric Psychiatry, 17, 61-68.Vuori, H. (1987). Patient satisfaction: An attribute or indicator of the quality of care?Quality Review Bulletin, 13 106-108.Vuori, H. (1980). Optimal and logical quality: Two neglected aspects of the qualityof health services. Medical Care, 18 (10), 975-985.Watson, J. (1979). The philosophy and science of caring. Boston: Little, Brown &Company.96Watson, J., Burckhardt, C., and Brown, L. (1979). A model of caring: An Alternativehealth care model for nursing practice and research. Clinical and Scientific Sessions. Kansas City: American Nurses' Association.Woods, N.F., & Catanzaro, M.C. (1988). Nursing research: Theory and practice. St.Louis: The C.V. Mosby Company.York, J.L., & Calsyn, R.J. (1977). Family involvement in nursing homes. TheGerontologist, 17 500-505.Zarit, S.H., Reeves, K.E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly:Correlates of feelings of burden. The Gerontologist, 20(6), 649-655.Zarit, S.H., Todd, P.A., & Zarit, J.M. (1986). Subjective burden of husbands and wives ascaregivers: A longitudinal study. The Gerontologist, 26(3), 260-265.97APPENDIX ATHE UNIVERSITY OF BRITISH COLUMBIA SCHOOL OF NURSINGThank you for participating in my study entitled:THE COGNITIVELY-IMPAIRED INSTITUTIONALIZED ELDERLY:SPOUSAL PERCEPTIONS AND EXPECTATIONS OF NURSING CAREShould you require clarification regarding the following questionnaire, I can bereached during weekdays at 822-7518 and at all other times at 272-4418.Susan Fong, Investigator. The chair of my thesis committee is Marilyn Dewis, AssistantProfessor, telephone 822-7496.CARING ASSESSMENT QUESTIONNAIRES (CARE-Q II)The purpose of this questionnaire is to have spouses of residents rate the nursing caretheir husband or wife received during their institutional stay. The spouses' impressions mayhelp nurses in deciding ways to improve resident care.Your participation is voluntary and you have the freedom to refuse any questions or todiscontinue participation in the study will not affect provision of care or in any way impact onthe status of your husband/wife in the institution. Names or initials will not be used on thequestionnaires and if any identifying features do exist, they will be promptly removed. This willhelp keep your responses confidential.Each statement contained in this questionnaire refers to an action associated with residentcare. Based on your experiences during your husband/wife's institutional stay, decide how muchyou agree or disagree with the view expressed. Circle the response that best describes howmuch you agree or disagree with the statement.98APPENDIX A (continued)The same questions are asked twice. The first time will solicit your responses pertainingto how you perceive the nursing your husband/wife received during his/her institutional stay. Inother words, what you see is happening with the nursing care receive by residents is termed yourperceptions. The same questionnaire is repeated again for the second time for your expectationsof that care. Expectations pertain to what you are looking for or what you feel nursing careought to be. There are no right or wrong answers. Your response is a matter of your personalopinion. This study will require about 45 minutes of your time. Once the questionnaire iscompleted, please mail both parts in the self-addressed stamped envelope. The return of thequestionnaire implies that you have given your consent to participate in this study.99APPENDIX A (continued)The following legend of responses will assist you in answering the questionnaire.LEGEND:Strongly disagree^ IDisagree^ 2Somewhat disagree^ 3Neither agree nor disagree 4Somewhat agree^ 5Agree^ 6Strongly agree^ 7Not applicable N/ABELOW IS AN EXAMPLE WHICH MAY HELP YOU IN RESPONDING TO THEQUESTIONNAIRE. IF THIS QUESTION WERE ON THE QUESTIONNAIRE, YOUWOULD HAVE CIRCLED THE NUMBER THAT CORRESPONDS TO THE LEGEND OFAGREEMENT. CIRCLE "N/A" IF THE QUESTION IS NOT APPLICABLE.A. DURING MY HUSBAND/WIFE'S INSTITUTIONAL STAY THE NURSES ON THISUNIT:GAVE MY SPOUSE'S BATH ON TIME^1 2 3 4 5 6 7 N/A100APPENDIX A (continued)WHAT YOU ARE LOOKING FOR (YOUR EXPECTATIONS OF NURSING CARE): "TO WHAT EXTENT NURSING CARE OUGHT TO BE" MEANS TO YOU.LEGEND:Strongly disagree^ 1Disagree^ 2Somewhat disagree 3Neither agree nor disagree^ 4Somewhat agree^ 5Agree^ 6Strongly agree 7Not applicable^ N/ADURING MY HUSBAND/WIFE'S STAY THE NURSES ON THIS UNIT:1. TOLD ME OF SUPPORT SYSTEMS AVAILABLE SUCH AS 1 2 3 4 5 6 7 N/ASELF-HELP GROUPS.2. PROVIDED BASIC COMFORT MEASURES, SUCH AS: 1 2 3 4 5 6 7 N/AAPPROPRIATE LIGHTING; CONTROL OF NOISE; BLANKETS;ETC.3. TALKED TO EACH OTHER IN ENGLISH AND NOT IN THEIR 1 2 3 4 5 6 7 N/ANATIVE LANGUAGE, IN MY SPOUSE'S PRESENCE.4. ANSWERED MY SPOUSE'S CALL LIGHT QUICKLY. 1 2 3 4 5 6 7 N/A5. TOLD MY SPOUSE IN UNDERSTANDABLE BUT ADULT 1 2 3 4 5 6 7 N/ALANGUAGE WHAT THE NURSE WAS ABOUT TO DO.6. TALKED TO MY SPOUSE. 1 2 3 4 5 6 7 N/A7. TALKED TO ME ABOUT MY SPOUSE'S FEELINGS AND 1 2 3 4 5 6 7 N/AABOUT MY SPOUSE'S DISEASE AND TREATMENT.8. DID NOT APPEAR BUSY AND UPSET. 1 2 3 4 5 6 7 N/A9. INTRODUCED THEMSELVES TO MY SPOUSE AND TOLD 1 2 3 4 5 6 7 N/AMY SPOUSE WHAT THEY DO.101APPENDIX A (continued)LEGEND:Strongly disagree^ 1Disagree^ 2Somewhat disagree 3Neither agree nor disagree^ 4Somewhat agree^ 5Agree^ 6Strongly agree 7Not applicable^ N/A10. KNEW WHEN TO CALL THE DOCTOR1 2 3 4 5 6 7 N/A11. CREATED A SENSE OF TRUST FOR MY SPOUSE AND ME.1 2 3 4 5 6 7 N/A12. WAS PATIENT EVEN WHEN MY SPOUSE WAS DIFFICULT.1 2 3 4 5 6 7 N/A13. ALLOWED CHOICES FOR MY SPOUSE.1 2 3 4 5 6 7 N/A14. CALLED MY SPOUSE BY HIS/HER NAME. 1 2 3 4 5 6 7 N/A15. ANTICIPATED THE SHOCK OVER MY SPOUSE'S DISEASE 1 2 3 4 5 6 7 N/APROGRESSION AND PLANNED OPPORTUNITIES,INDIVIDUALLY OR AS A GROUP, TO TALK ABOUT IT.16. PUT MY SPOUSE FIRST, NO MATTER WHAT ELSE 1 2 3 4 5 6 7 N/AHAPPENED.17. MADE SURE OTHERS KNEW HOW TO CARE FOR MY 1 2 3 4 5 6 7 N/ASPOUSE.18. GAVE MY SPOUSE GOOD PHYSICAL CARE. 1 2 3 4 5 6 7 N/A19. WERE COMFORTING TO MY SPOUSE. 1 2 3 4 5 6 7 N/A20. LISTENED TO MY SPOUSE. 1 2 3 4 5 6 7 N/A21. KNEW MY SPOUSE AS A PERSON. 1 2 3 4 5 6 7 N/A102APPENDIX A (continued)LEGEND:Strongly disagree^ 1Disagree^ 2Somewhat disagree 3Neither agree nor disagree^ 4Somewhat agree^ 5Agree^ 6Strongly agree 7Not applicable^ N/A22. 1 2 3 4 5 6 7 N/AVOLUNTEERED TO DO "LI i ILE" THINGS SUCH ASBRINGING MY SPOUSE A CUP OF COFFEE, SITTING WITHMY SPOUSE, ETC.23. KNEW MY SPOUSE'S NEEDS WITHOUT MY SPOUSE 1 2 3 4 5 6 7 N/AHAVING TO ASK, OFFERING PAIN MEDICATION,TOILETING, ETC.24. EXPLAINED THINGS TO MY SPOUSE IMPORTANT TO 1 2 3 4 5 6 7 N/AHIS/HER CARE.25. CHECKED ON MY SPOUSE FREQUENTLY. 1 2 3 4 5 6 7 N/A26. GAVE MY SPOUSE'S MEDICATIONS OR TREATMENTS ON 1 2 3 4 5 6 7 N/ATIME.27. ENCOURAGED MY SPOUSE TO ASK ANY QUESTIONS 1 2 3 4 5 6 7 N/AHE/SHE MIGHT HAVE.28. KNEW HOW TO GIVE SHOTS, ETC. AND HOW TO MANAGE 1 2 3 4 5 6 7 N/ATHE EQUIPMENT, LIKE THE SUCTION MACHINES, ETC.29. MADE SURE MY SPOUSE'S APPOINTMENT SCHEDULES,FOR X-RAYS, OR SPECIAL PROCEDURES WERE REALISTIC1 2 3 4 5 6 7 N/AFOR MY SPOUSE'S CONDITION AND SITUATION.30. WERE PROFESSIONAL IN APPEARANCE. 1 2 3 4 5 6 7 N/A31. WERE CONSISTENT IN HOW THEY TREATED MY SPOUSE. 1 2 3 4 5 6 7 N/A1APPENDIX A (continued)03LEGEND:Strongly disagree^ 1Disagree^ 2Somewhat disagree 3Neither agree nor disagree^ 4Somewhat agree^ 5Agree^ 6Strongly agree 7Not applicable^ N/A32. INVOLVED MY SPOUSE IN THEIR CARE. 1 2 3 4 5 6 7 N/A33. WERE ORGANIZED. 1 2 3 4 5 6 7 N/A34. 'TREATED MY SPOUSE AS AN INDIVIDUAL. 1 2 3 4 5 6 7 N/A1 04APPENDIX A (continued)WHAT YOU SEE IS HAPPENING (YOUR PERCEPTION OF NURSING CARE):TO WHAT EXTENT YOU THINK YOUR HUSBAND/ WIFE IS RECEIVING THE KINDOF CARE DESCRIBED BELOW.LEGEND:Strongly disagree^ 1Disagree^ 2Somewhat disagree 3Neither agree nor disagree^ 4Somewhat agree^ 5Agree^ 6Strongly agree 7Not applicable^ N/ADURING MY HUSBAND/WIFE'S STAY THE NURSES ON THIS UNIT:1. TOLD ME OF SUPPORT SYSTEMS AVAILABLE SUCH AS 1 2 3 4 5 6 7 N/ASELF-HELP GROUPS.2. PROVIDED BASIC COMFORT MEASURES, SUCH AS: 1 2 3 4 5 6 7 N/AAPPROPRIATE LIGHTING; CONTROL OF NOISE; BLANKETS;ETC.3. TALKED TO EACH OTHER IN ENGLISH AND NOT IN THEIR 1 2 3 4 5 6 7 N/ANATIVE LANGUAGE, IN MY SPOUSE'S PRESENCE.4. ANSWERED MY SPOUSE'S CALL LIGHT QUICKLY. 1 2 3 4 5 6 7 N/A5. TOLD MY SPOUSE IN UNDERSTANDABLE BUT ADULT 1 2 3 4 5 6 7 N/ALANGUAGE WHAT THE NURSE WAS ABOUT TO DO.6. TALKED TO MY SPOUSE. 1 2 3 4 5 6 7 N/A7. TALKED TO ME ABOUT MY SPOUSE'S FEELINGS AND 1 2 3 4 5 6 7 N/AABOUT MY SPOUSE'S DISEASE AND TREATMENT.8. DID NOT APPEAR BUSY AND UPSET. 1 2 3 4 5 6 7 N/A9. INTRODUCED THEMSELVES TO MY SPOUSE AND TOLD 1 2 3 4 5 6 7 N/AMY SPOUSE WHAT THEY DO.105APPENDIX A (continued)LEGEND:Strongly disagree^Disagree^ 2Somewhat disagree 3Neither agree nor disagree^ 4Somewhat agree^ 5Agree^ 6Strongly agree 7Not applicable^ N/A10. KNEW WHEN TO CALL THE DOCTOR1 2 3 4 5 6 7 N/A11. CREATED A SENSE OF TRUST FOR MY SPOUSE AND ME.1 2 3 4 5 6 7 N/A-12. WAS PATIENT EVEN WHEN MY SPOUSE WAS DIFFICULT.1 2 3 4 5 6 7 N/A13. ALLOWED CHOICES FOR MY SPOUSE.1 2 3 4 5 6 7 N/A14. CALLED MY SPOUSE BY HIS/HER NAME. 1 2 3 4 5 6 7 N/A15. ANTICIPATED THE SHOCK OVER MY SPOUSE'S DISEASE 1 2 3 4 5 6 7 N/APROGRESSION AND PLANNED OPPORTUNITIES,INDIVIDUALLY OR AS A GROUP, TO TALK ABOUT IT.16. PUT MY SPOUSE FIRST, NO MAI ihR WHAT ELSE 1 2 3 4 5 6 7 N/AHAPPENED.17. MADE SURE OTHERS KNEW HOW TO CARE FOR MY 1 2 3 4 5 6 7 N/ASPOUSE.18. GAVE MY SPOUSE GOOD PHYSICAL CARE. 1 2 3 4 5 6 7 N/A19. WERE COMFORTING TO MY SPOUSE. 1 2 3 4 5 6 7 N/A20. LISTENED TO MY SPOUSE. 1 2 3 4 5 6 7 N/A21. KNEW MY SPOUSE AS A PERSON. 1 2 3 4 5 6 7 N/AAPPENDIX A (continued)106LEGEND:Strongly disagree^ 1Disagree^ 2Somewhat disagree 3Neither agree nor disagree^ 4Somewhat agree^ 5Agree^ 6Strongly agree 7Not applicable^ N/A22. 1 2 3 4 5 6 7 N/AVOLUNTEERED TO DO "L11 ILE" THINGS SUCH ASBRINGING MY SPOUSE A CUP OF COFFEE, SITTING WITHMY SPOUSE, ETC.23. KNEW MY SPOUSE'S NEEDS WITHOUT MY SPOUSE 1 2 3 4 5 6 7 N/AHAVING TO ASK, OFFERING PAIN MEDICATION,TOILETING, ETC.24. EXPLAINED THINGS TO MY SPOUSE IMPORTANT TO 1 2 3 4 5 6 7 N/AHIS/HER CARE.25. CHECKED ON MY SPOUSE FREQUENTLY. 1 2 3 4 5 6 7 N/A26. GAVE MY SPOUSE'S MEDICATIONS OR TREATMENTS ON 1 2 3 4 5 6 7 N/ATIME.27. ENCOURAGED MY SPOUSE TO ASK ANY QUESTIONS 1 2 3 4 5 6 7 N/AHE/SHE MIGHT HAVE.28. KNEW HOW TO GIVE SHOTS, ETC. AND HOW TO MANAGE 1 2 3 4 5 6 7 N/ATHE EQUIPMENT, LIKE THE SUCTION MACHINES, ETC.29. MADE SURE MY SPOUSE'S APPOINTMENT SCHEDULES,FOR X-RAYS, OR SPECIAL PROCEDURES WERE REALISTIC1 2 3 4 5 6 7 N/AFOR MY SPOUSE'S CONDITION AND SITUATION.30. WERE PROFESSIONAL IN APPEARANCE. 1 2 3 4 5 6 7 N/A31. WERE CONSISTENT IN HOW THEY TREATED MY SPOUSE. 1 2 3 4 5 6 7 N/A107APPENDIX A (continued)LEGEND:Strongly disagree^ 1Disagree^ 2Somewhat disagree 3Neither agree nor disagree^ 4Somewhat agree^ 5Agree^ 6Strongly agree 7Not applicable^ N/A32. INVOLVED MY SPOUSE IN THEIR CARE.33. WERE ORGANIZED.34. TREATED MY SPOUSE AS AN INDIVIDUAL.108APPENDIX A (continued)REQUEST FOR DEMOGRAPHIC INFORMATIONPlease fill in the following information; your responses will provide informationimportant for the study.1. Your age:^2. Your gender: INFORMATION PERTAINING TO YOUR HUSBAND/WIFE:3. Reason for the admission: ^4. Length of stay to date (in months): ^5. Your husband/wife's age: ^6. His/Her diagnosis(es): 7. Help required for activities of daily living: ^Thank you for your assistance and participation.109APPENDIX BLetter of InformationMy name is Susan Fong. I am a Registered Nurse currently working on my thesis forthe Master of Science in Nursing Degree at the University of British Columbia. I aminterested in studying the spouses' perceptions and expectations of nursing caredelivered to the institutionalized elderly who are mentally confused. The quality ofnursing care is of special interest to me as a Nursing Unit Manager. Information can befound from the nurses' viewpoint but little is known from the spouses' perspective.Spouses are in a unique position to offer insight on what is happening in institutions andwhat consumers are looking for in nursing care. The knowledge generated from thestudy will assist nurses to improve their nursing care delivery.This letter is my invitation to you to participate in my study. You are under noobligation to participate, however. Your participation or non-participation will not in anyway affect the health care that your husband/wife is receiving.If you are a spouse of a resident who has any type of dementing process caused by anumber of illness conditions including Alzheimer's Disease and dementia, and who haslived in the facility six months or more, I would like your participation in completing aquestionnaire. The questionnaire will take approximately 45 minutes of your time tocomplete and you have the freedom to refuse to answer any questions. Anonymity isguaranteed as no identifying information is required on the questionnaire. Thequestionnaire will be destroyed once the study is completed. Upon completion of thestudy, a summary of the findings can be forwarded on request.I would be pleased to answer any questions you may have about the study and I canbe reached at home at 272-4418, or at work at 822-7518. The chair of my thesiscommittee is Marilyn Dewis, Assistant Professor, telephone 822-7496.Sincerely,Susan Fong, R.N., B.S.N.Graduate StudentThe University of British Columbia110APPENDIX CINSTRUCTIONS TO THE PARTICIPANTS OF MY STUDY ENTITLED: THE COGNITIVELY-IMPAIRED INSTITUTIONALIZED ELDERLY:SPOUSAL PERCEPTIONS AND EXPECTATIONS OF NURSING CAREThank you for participating in my study. Please complete study within two weeks uponreceipt of the questionnaire.As soon as possible kindly return the completed questionnaire to me using the self-addressed stamped envelope.Thank you.Susan FongInvestigator822-7518 Work272-4418 Home111APPENDIX DAptness of the MANOVA ModelIn order to make inferences to the study population, there should be no seriousviolations of the assumptions of parametric statistics and the MANOVA model. Theassumptions of normality, including homogeneity of variance and outliers, skewness,and kurtosis (asymmetry and peakedness) and independent observations should be fairlywell met.In terms of the homogeneity of variance and outliers of the normalityassumption, all residuals were within three standard deviations. The highest value isfound in statement 1 (Told me of support systems available such as self-help groups),where the standard deviation for perception is 2.13. In terms of skewness and kurtosis,the skewness coefficient should not exceed plus or minus two, and for kurtosis, thecoefficient should be found within three standard deviations to either side. A standarddeviation of zero indicates a symmetrical or normal distribution. The plus or minus onone side or the other of the normal curve signifies a bipolar orientation of the datadistribution. Skewness and kurtosis indicate the numbers of respondents who generallyagree or disagree with a statement. Those statements exceeding the acceptable limitsfor both skewness and kurtosis are listed on Appendices E and F respectively.To summarize, models are seldom perfect and this particular model is noexception. Some skewness and kurtosis violations were found. In particular, statement26 (Gave treatments on time) and statement 14 (Called spouse by his/her name) werehighly peaked (11.16 and 12.37). What this indicates is that many spouses agreed withthese two statments. Moreover, statement 14 (Called my spouse by his/her name) wasthe only dependent observation seen, even though some of the means for perceptionsand expectations were very close together (Figure 1). Put another way, the data are1 1 2normally distributed with mean mu and variance sigma squared. In general, there wereno serious violations of the normality assumption. As a result, some inferences can bemade pertaining to the sample under study.APPENDIX EStatements with Skewness Coefficients Greater Than Plus orMinus Two Standard DeviationsPerception Skewness3.^Talked in English -2.0626.^Gave treatments on time -2.98Expectation14.^Called spouse by name -3.2328. Knew how to give shots -2.7829. Made sure procedures were realistic -2.0630.^Were professional in appearance -2.17APPENDIX FStatements with Kurtosis Coefficients Greater Than Plusor Minus Three Standard DeviationsPerception Kurtosis3.^Talked in English 4.285.^Told spouse in adult language 3.5026.^Gave treatments on time 11.1634.^Treated spouse as an individual 3.09Expectation3.^Talk in English 3.5811.^Created a sense of trust 4.0214.^Called spouse by name 12.3726.^Gave treatments on time 3.7528. Knew how to give shots 8.7429. Made sure procedures were realistic 5.4330.^Were professional in appearance 5.79113


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