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A COMPARISON OF THE DIFFERENCE IN ATTITUDES
TOWARDS COMMUNITY SERVICES OF DEMENTIA CAREGIVERS
LIVING IN RURAL AND NON-RURAL AREAS

presented by

JANET SHANAHAN WOODS

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I _ I. _._ _— ___ , , , H A __ _ ,_ _ ,

A COMPARISON OF THE DIFFERENCE IN ATTITUDES TOWARDS
COMMUNITY SERVICES OF DEMENTIA CAREGIVERS LIVING IN RURAL
AND NON-RURAL AREAS

By

Janet Shanahan Woods

A THESIS

Submitted to
Michigan State University
in partial fulfillment of the

requirements

for the degree of

MASTER OF SCIENCE

College of Nursing

1 993

ABSTRACT

A COMPARISON OF THE DIFFERENCE IN ATTITUDES TOWARDS
COMMUNITY SERVICES OF DEMENTIA CAREGIVERS LIVING IN RURAL
AND NON-RURAL AREAS

BY

Janet Shanahan Woods

The purpose of this study was to examine and compare the attitudes
towards community services of rural and non-rural caregivers of relatives
with dementia. The sample included 28 caregivers living in rural areas and
43 caregivers living in non-rural areas. With the exception of race, no
significant sociodemographic differences were found between the two
groups. Bivariate analysis revealed a significant difference between rural
and non-rural caregivers in their preference for informal services, with rural
caregivers preferring to use family and friends over formal community
services. When the affect of race was controlled for using analysis of
covariance, no significant differences were noted. Implications of the

findings for research and practice are presented.

To Bob, Kate, Jessica and Colleen Woods

ACKNOWLEDGMENTS

I would like to thank my thesis chair, Clare Collins for her guidance,
support, and friendship throughout this project. I would also like to thank the
other members of my committee; Sharon King, Barbara Given, and Manfred
Stommel for their time and efforts in reviewing the drafts of this thesis. The
assistance of Chiung Ying Cheng with the data analysis was invaluable.

Special thanks to my family for their patience and ongoing support and to
my colleagues in the ICU at Sparrow Hospital for their encouragement

throughout my graduate school career.

TABLE OF CONTENTS

LIST OF TABLES
LIST OF FIGURES

INTRODUCTION
Overview of Dementia
Family Care of Persons with Dementia
Role of Community Services
Factors Influencing Service Use
Rural Service Use
Rural Attitudes

PURPOSE OF THE STUDY
Research Question
Study Relevance

CONCEPTUAL FRAMEWORK
Noelker & Bass Model of Community Service Use
Adaptation of Noelker 8. Bass Model for Study of Caregiver
Attitudes
Conceptual Definition of Study Variables

REVIEW OF THE LITERATURE
Community Service Use in Rural and Non-Rural Areas
Attitudes Towards Community Service Use
Rural Attitudes

vii

viii

VU'IU'IOJNN-fi

(DCOCO

1O
11

13
15

17
17
19
21

METHODS
Research Design
Sample Procedures
Data Collection Procedures
Operational Definition of Variables
Instrumentation
Limitations of the Instrument
Data Analysis

RESULTS
Sociodemographic Characteristics
Scale Properties of the Rural and Non-Rural Samples
Comparison of Mean Scores on Attitude Subscales
Analysis of Covariance

DISCUSSION
Research Question
Limitations
Recommendations for Future Research
Implications for Advanced Nursing Practice

LIST OF REFERENCES
APPENDICES

Appendix A: Community Service Attitude Inventory Items
Appendix B: U.C.R.I.H.S. Approval

vi

24
24
24
25
26
27
29
29

31
31
35
39
40

42
42
46
47
48

52
58

58
60

Table 1:

Table 2:

Table 3:

Table 4:

Table 5:

Table 6:

Table 7:

Table 8:

Table 9:

LIST OF TABLES

Demographic Variables for the Rural and Non-Rural Sample

Chi-Square Tests for Differences in Group Means

ANOVA for Differences in Group Means

Scale Characteristics of Rural Sample

Scale Characteristics of Non-Rural Sample

lnterscale Correlations of Rural Sample

lnterscale Correlations of Non-Rural Sample

T-Tests for Observed Group Differences

ANCOVA for Adjusted Group Differences

32

33

34

36

37

38

38

39

41

LIST OF FIGURES

Figure 1: Noelker & Bass Model of Community Service Use

Figure 2: Use of the Noelker & Bass Model to Study Rural/Non-Rural
Attitudes

viii

12

15

Introduction

Family caregiving of a relative with Alzheimer's Disease or other
dementing disorders affects millions of Americans and is projected to
increase in numbers in the future. Support of caregivers may come from
the individual's informal and formal support systems. Informal support
includes assistance from family and friends while formal support consists
of health care and social services. Community support services are one
way in which the formal system can enhance caregiver effectiveness and
improve patient functioning.

The issue of designing and providing effective community-based
services for persons with dementia and their families is complex and
multidimensional. Barriers to access, availability and affordability of
services all contribute to the variation seen in patterns of service use.
While it is widely acknowledged that individuals living in rural areas have
greater difficulties with the availability of, access to and in many cases the
affordability of services. the concept of the attitudes towards use of those
services that are available has not been adequately studied in the rural
population. The focus of this study is to examine and compare the
attitudes towards community service use of rural and non-rural caregivers

of individuals with dementia.

OvendewcLDementia

Dementia is the loss of mental function in an otherwise awake and alert
individual, requiring over time the continuous care of others. Alzheimer's
Disease (AD) and related dementias such as multi-infarct dementia,
progressive supranuclear palsy, Huntington's Disease and Parkinson's
Disease with dementia cause slow loss of memory and personality,
ultimately leading to physical disability and death. While A.D. may occur in
individuals 30-40 years of age, the vast majority are over 65 years of age
(United States Congress, Office of Technology Assessment, 1987).

Disorders which cause severe dementia affect approximately 1.8
million Americans today. An additional 1 to 5 million Americans suffer from
mild to moderate dementia. Over the next 20 years these numbers will rise
substantially as the population ages due to the aging of the large "baby
boom” cohort. In addition, life expectancy at birth has risen from 47.3 years
in 1900 to 74.5 years in 1982. The aging of the population, especially in
the 85 + years category results in an increasing number of cases of

dementia (OTA Report, 1987).

E 'l C [E .” D I‘

Due primarily to the efforts of family members, as many as 60% of the
dependent elderly are able to reside in the community outside of
institutions with 80% of their care assumed by informal providers
(Hooyman, Gonyea & Montgomery, 1983). Noelker & Wallace (1985)
found in their study of over 600 caregivers, that caregiving assistance was

provided for an average of six years with the caregiver spending over two

hours daily on the elder's personal care alone.

Typically one family member assumes the majority or exclusive care of
the impaired elder. Most often this individual is a female spouse or
daughter (Bass & Noelker, 1985). While it has been reported that both
spouse caregivers and daughters experience high levels of physical,
emotional and financial strain, it has been hypothesized that spouse
caregivers are at greater risk for the negative consequences of caregiving
because they are frequently elderly themselves and may have physical
problems that diminish their ability to respond to the demands of
caregiving (Noelker & Wallace, 1985).

B | I C 'l S .

The burden of caring for a family member with dementia has been well
documented in the literature (Kuhlman, Wilson, Hutchinson & Wallhagen,
1991). Caring for a patient with dementia may drain a caregiver physically,
emotionally and financially (Yankelovich, Skelley & White, 1986; George
8. Gwyther, 1986). While burden is not the focus of this study, it is often the
catalyst that prompts a caregiver to seek assistance.

It is commonly assumed by formal providers that the establishment of
public policy to assist family caregivers with the demands of caregiving is
essential if persons with dementia are to be maintained in their homes and
communities. While the weight of empirical evidence does not support this
assumption, i.e. the majority of caregivers do not use community services
and yet manage to maintain their family member in the home, it is an

assumption of this study that formal community services have the potential

to assist the caregiver in managing their role, lessening the burden and
thereby increasing the chances of keeping the individual in the home.

Given, Collins & Given (1988) cite the use of community-based services
as a part of the caregiving environment, i.e. "those conditions or forces that
influence the quality and course of the caregiving relationship" (p. 74).
Despite these assumptions about the role of community services in easing
caregiver burden and maximizing patient functioning, research shows that
caregivers make little use of community services (Gwyther, 1988; Stone,
Cafferata & Sangl, 1987). Stommel, Given, 8: Given (1990) in a study of
caregiver burden and depression found that among caregivers of
physically impaired elders, a pattern of service-use emerged where a few
patients used many services often while the majority used few services
either infrequently or not at all. In addition it was noted that individuals
providing care to a family member with dementia used only half as many
community services as caregivers of physically impaired family members.
Prior research has also shown that knowledge of and access to services
did not necessarily lead to service use (Caserta et al., 1987).

When services are used by caregivers it is often very late in the
caregiving process. Lawton, Brody & Saperstein (1989) in their
demonstration project to provide respite care to caregivers of AD. patients,
found that the impact of the intervention was minimized by the caregivers
reluctance to seek assistance. These caregivers required much
encouragement and education regarding the use of respite services before

they were able to act.

EactcranfluencingfiemiceUse

Current research questions regarding dementia care are concerned
with the issue of barriers to service use in terms of access and availability.
The majority of the studies have described frequency and volume of use,
while some intervention studies have attempted to increase use through
increased availability.

In 1987, Noelker & Bass expanded Andersen's (1968) original
conceptualization of service use to include the primary caregiver's
characteristics along with the characteristics of the care recipient. They
concluded that different predictive factors of both the care-recipient and
caregiver were related to service use.) While Noelker & Bass's inclusion of
the primary caregiver's characteristics into the study of the factors that
influence service use greatly expands the potential for understanding use,
to date few research efforts have been directed towards examining the
attitudinal differences that may exist within the population of caregivers

and the relationship of these attitudes to the inclination to use services.

BuraLSeniiceUse

Many factors influence the use of community services including lack of
knowledge about services, cost of services, inability of caregivers to
arrange service, fear or distrust of service providers, lack of confidence in
the quality of services and so on (OTA Report, 1989). To date, the majority
of studies have been directed towards urban dwellers with little effort made
to compare differences between urban and rural populations. The

seriousness of this issue was brought to light in 1987 when the National

Rural Health Research Association and the Foundation for Health Services
Research, responding to a congressional directive to develop a rural
health research agenda, co-sponsored a national conference to address
key health care issues facing rural Americans (Hersh & Van Hook, 1989).
Two of the key issues for future research raised during this conference
concerned long term care of the rural elderly and the extent to which rural
families differ from urban families in their attitudes towards formal and
informal health and social support services (Patton, 1989).

At least three factors may influence the use of community services by
individuals living in rural areas; 1) access, 2) availability and 3) attitudes
towards the use of community services. In terms of access and availability
of services, rural residents have access to fewer specialized services thus
restricting their long-term care options. In addition to limited access to
health care providers and facilities, few areas have either adult day care or
in-home care services. Due to the dispersed population in rural areas.
participation in family support groups may require substantial travel time
(United States Congress, Office of Technology Assessment, 1987).

The availability of community services for those living in rural areas
differs from the network of services in urban areas in two important ways;
1) the range of services is more limited in rural areas, and 2) given any
one type of service, fewer alternative forms are available to choose from
(Coward & Cutler, 1989).

The third factor that may influence the use of community services by
those living in rural areas is the different attitudes rural residents may hold

towards community services. Long & Weinart (1989) emphasize the

importance of understanding the rural individual's perception of health,
health needs and health care services in terms of their attitudes, values
and belief systems. Others have noted that health care delivery models
based on urban systems are not acceptable to or widely utilized by rural
individuals unless they take into account the unique needs, attitudes and

life styles of rural life (Scheidt, 1985).

BuraLAttitudes

Rural sociologists are inconsistent regarding the existence of a unique
set of rural values, beliefs and attitudes. Krout (1986) points out that
classical studies theorize a predominant set of values which differ from
values held by individuals in urban areas. Such values as practicality,
efficiency, friendliness, honesty, patriotism, deep religious commitment,
social conservativism and a mistrust of government have been cited as
unique to the rural culture. Rogers (1983) describes rural people as
having more self-reliance with a greater reluctance to seek assistance from
others in comparison with urban individuals. Polk-Wamer (1991)
describes the rural family as often isolated with an ”invisible fence” around
them that serves to maintain the isolation and values of that particular
family.

Technological changes, advances in communication systems and the
industrialization of rural areas have led to changes in the social structure to
the extent that it is now felt by some researchers that no significant
differences exist between urban and rural areas. While acknowledging

this fact, Krout (1986) argues that it does not necessarily follow that the

distinctive rural value structure has disappeared, especially among the
elderly cohort who were socialized to early 1900 values. The few studies
that address the issue of rural attitudes fail to provide empirical evidence of
a difference between rural and non-rural residents. The focus of this study
is to describe differences that may exist in rural and non-rural attitudes
towards community services based on Krout's assumption that among the
elderly cohort a distinctive set of rural values still exists.

Since individuals with Alzheimer's Disease and other dementing
disorders are generally unable to request assistance, it is left to the
caregiver to initiate the use of community services and to maintain contact
with service providers. For this reason, the study of caregiver attitudes
towards services is important in designing programs that fit the rural
“population's specific needs and lifestyle. I

While the issues of access and availability of services to the rural
population are complex and must be addressed at the national and
community level, it is not within the scope of this study to investigate these
factors. The focus of this study is simply to describe the attitudinal
differences of caregivers that may exist towards community service use
based on geographic residence. A limitation of this study is lack of control
for length of residence in a particular area. This fact should be kept in

mind when interpreting the study results.

Purpose of the Study

The purpose of this study is to describe the attitudinal differences of
primary caregivers of individuals with dementia towards the use of

community services based on geographic residence.

Researcbfluestion
The specific research question is "What are the differences in caregiver
attitudes towards community services between rural and non-rural

residents?"

Studyfielevance

Clinical Nurse Specialist in primary care practice are at the forefront of
the movement to provide efficient, cost-effective health care services at the
community level. They have the unique opportunity to play an important
role at the local, state and federal levels in developing policies and
programs for delivering community-based services that assist families and
caregivers in dealing with the burdens of caregiving. It is essential that
research efforts be directed towards evaluating the benefits of and barriers
to service utilization among this population not only in terms of access
issues but also in terms of acceptability of services to clients. Once factors
that influence the use of community-based services in rural areas have
been identified, efforts can be focused on providing those services which

best help caregivers provide care to their patients with AD.

Conceptual Framework

The need for a comprehensive model to study the issue of service use
is becoming more apparent. Haril, Noelker, & Blake (1985) note that
human service organizations are being pressured to be accountable for
program effectiveness and efficiency. As the population ages, especially
the frail elder, the demand for quality and quantity of services will increase.
A comprehensive model of assessment, planning, organization and
evaluation of services for the elderly takes into account variables related to
service knowledge and awareness, access to services, preference for type
of service and the predisposing, enabling and need characteristics of both
the care recipient and the primary caregiver.

Andersen’s (1968) Behavioral Model of Health Service Utilization
represents one of the first attempts to describe a conceptual model to
guide the study of the multiple factors that influence health service
utilization. The framework emphasizes the importance of societal, health
service system, and individual characteristics as they influence use.
Societal determinants include those changes in medical technology and
social norms that affect the definition and treatment of illness. Health
service system characteristics describes the resources and organization of
the health care system, i.e. what is available and how it is delivered.
Individual determinants are those predisposing, enabling and need
characteristics of the client that influence service use.

Andersen’s model defines health service utilization as the use of

medical services and does not address the use of other types of formal and

10

11

informal support. The patient/client is the focus of this model. The
following section describes Noelker & Bass’s (1987) modification of the
Andersen framework to include the influence of family caretakers on the

use of community services such as visiting nurses and respite care.

WWW

Noelker & Bass (1987) expanded Andersen's Behavioral Model of .
Health Service Utilization (1968) to include variables which reflect beliefs
about service use and family care responsibilities. Service use was
expanded to include community services. They proposed that because the
primary caregiver may influence service use both directly and indirectly,
especially if the caregiver is experiencing stress as a result of caregiving,
that caregiver characteristics must be included in the framework. Finally,
Noelker and Bass included secondary members of the informal support
network because they may directly assist the primary caregiver with care or
provide relief to the caregiver which may influence the use of and need for
formal assistance. In the expanded framework the model is bifurcated to
include predisposing, enabling and need factors of both the impaired elder

and the primary caregiver.

12

Figure 1: Noelker & Bass Model of Community Service Use

 

Predisposing Factors
- Caregiver
° Patient

 

 

 

 

Enabling Factors 8 Community
- Caregiver ~ Service
- Patient Use

 

 

 

 

 

 

Need Factors
° Caregiver
. Patient

 

 

Predisposing, enabling and need factors are the three components of
individual determinants in the Noelker & Bass framework (See Figure 1).
Predisposing factors are those characteristics that exist prior to service use
and which affect the likelihood of use, including socio-demographic
characteristics such as age, sex, race, family, educational level,
employment status and occupation as well as health-related attitudes such
as beliefs about health and illness. In the Noelker & Bass model,
predisposing characteristics refer to the characteristics of both client and
primary caregiver that exist prior to impairment or service need and
influence community service use.

Social and economic resources that facilitate or impede service use are

13

enabling factors. Enabling characteristics are those conditions that
facilitate health service utilization including income, insurance, health care
costs, assistance from informal support networks, availability and access to
care. Noelker & Bass (1987) note that many enabling factors are identical
for patient and caregiver, especially if they reside in the same residence.
Factors such as educational level, which may be markedly different
between patient and caregiver, may independently influence service use.
Need variables are the immediate factorsthat trigger the need for
service use. These factors include the signs and symptoms of disease and
are based on both the impaired elder's and the caregiver's perception of
health and clinical evaluation by heath care providers. Noelker & Bass
modified the variable to include the care recipients' needs pertaining to
illness and impairment level and the caregiver's needs such as stress
resulting from the caregiving situation. Caregiver needs are likely to
influence the use of community services due to the need to relieve the

stress of caregiving

Ano- no LO‘.‘ :z... new 0 o o -‘r.9" u: .-

In this study, attitudes and residence are discussed within the
framework of predisposing variables. The focus of the study is to describe
the relationship between geographic residence and attitudes towards
community services as predisposing variables. The intention of the
researcher is not to examine this relationship in terms of actual service use

(See Figure 2).

14

Figure 2: Use of the Noelker a Base Model to Study Rural/Non-
Rural Attitudes

 

Predisposing Factors

 

 

 

 

- Attitudes toward Community Community
Service Use —’
Service
: Use

0 Rural-Non-Rural Residence

 

 

 

Predisposing variables are those individual characteristics that exist
prior to service need and which influence the decision to use or not use
services. Attitude and belief variables as well as geographic residence,
although not solely responsible for service use, are likely to influence
utilization. According to Andersen & Newman (1973), attitudinal
differences do result in differences in inclination towards the use of
services. Noelker & Bass (1987) postulate that caregiver beliefs about the
acceptability and benefit of community services may influence service
seeking and utilization. For example, those individuals who believe in the
use of government assistance may be more inclined to seek community

services earlier than an individual who disapproves of government

15

assistance programs. If the assumption that a unique set or rural attitudes
exists is true, then rural residence can be viewed as a predisposing
variable. In the case of the primary caregiver, who often serves as a proxy
for the impaired elder, it is important to assess attitudinal predispositions

and the differences that may exist between rural and non-rural residence.

2 IDI'T [SI III‘II

Caregiver attitudes towards community services is the focus of this
study. The concept of attitudes has been studied by social psychologists
since the turn of the century. Allport (1935) was among the first researcher
to question the conceptualization of attitudes as unidimensional attributes.
He postulated that attitudes should be viewed as multidimensional
characteristics with an affective, cognitive, and behavioral component. The
affective component consists of an individual's feelings of like or dislike
about an object. The cognitive component consists of an individual's
beliefs (whether or not they are in fact true) about an object. The individual
organizes these affective and cognitive components into a system which
predisposes him to respond (behavioral component) in a manner which is
consistent with that system.

The work of Ajzen & Fishbein in the 70's and 80's regarding the theory
and measurement of attitudes further elaborated this conceptualization.
They postulated that while a person's attitudes towards an object influence
his overall response to the object, it may or may not be predictive of a
specific behavior. A specific behavior is determined by the intention to

perform that behavior. Intentions are a function of the individual's attitudes

 

 

16

towards performing the behavior and his subjective norms (Ajzen &
Fishbein, 1980). Intentions then can be viewed as rational decisions made
by an individual based in part upon the influence of attitudes and
perceptions towards an object which in turn are influenced by the
individual's values and belief system. Attitudes then can be defined as
latent biases or inclinations of individuals that will be translated into action
only if a host of other conditions are met For purposes of this study,
attitudes towards community services will be conceptually defined as latent
biases or inclinations of caregivers that will be translated into action only if
a host of other conditions such as affordability, accessibility and availability
of services are present (Collins et al, 1991).

Rural residence is defined by the US. Census Bureau as residence in
a town with a population of less than 2,500 or in the open country. For
purposes of this study rural residence is defined as residence in a town of
2,500 or less. Non-rural residence is defined as residence in a town with a

population of 100,000 or greater.

Review of the Literature

In recent years extensive research examining service utilization has
been conducted. Studies have focused broadly on those factors that
influence the decision to use services. The focus of this review will be on
what is known about community service use in general in rural and non-
rural areas and specifically about the the influence that attitudes may exert

on the decision to use services.

Many of the studies of rural service use focus on a comparison of the
rural/urban service networks of impaired elders. Coward, Cutler & Mullens
(1990), in their study of 3,761 impaired elders, found that those individuals
residing in non-metropolitan communities were significantly less likely to
be receiving aid from a formal provider and more likely to be receiving
assistance from informal helpers exclusively. Even the most severely
impaired elders living in rural areas were found to use the informal helping
network almost exclusively. The authors speculate that this may be the
result of the lack of formal services available to rural elders and/or the
reluctance of rural elders to use these services. However, no empirical
data exists to support this speculation.

In their study of 1,196 noninstitutionalized rural elders living in Virginia,
Newhouse & McAuley (1987) found that these individuals receive almost
all (91.7%) of their care from informal caregivers with 5.5% of their care

coming from a combination of informal and formal sources.

17

18

Nyman, Sen, Chen & Commins (1991) studied data from the Wisconsin
Annual Survey of Home Health Agencies to assess the urban/rural
differences in home health service use. They found that urban dwellers
are significantly more likely to use home health services than rural
dwellers. They suggest that rural patients may have different needs both
physically and in terms of life style. They conclude that in order to fully
assess service use in rural areas it is also necessary to account for other
aspects of use such as the availability of informal caregivers and preferred
types of care they receive.

Finally, in a descriptive study of noninstitutionalized disabled elders
from the longitudinal Long Term Care Study, Clark (1992) found that urban
residents were significantly more likely to receive formal assistance in
every aspect of ADL and lADL's than were their rural counterparts. Clark
concludes that future research efforts must delineate the primary source of
variations observed in rural service use.

As has been noted frequently in the literature, only approximately 9-
25% of the variance seen in service utilization studies can be explained
(Wolinsky & Arnold, 1988). While results of existing studies do provide a
beginning understanding of the dynamics of community service use by
caregivers of individuals with dementia, they also suggest the need for the
study of other patient/caregiver characteristics. McCaslin (1988) in her
review of four major studies of service use predictors notes the need for

increased attention to the influence of attitudes.

19

III'II I I S 'l S . ‘II

The influence of the attitudes of family caregivers on the decision to use
community services has been frequently cited in anecdotal reports of
dementia demonstration projects (Lawton et al, 1989; Montgomery &
Borgatta, 1989). The need for expanding the study of the dimensions that
influence attitudinal predispositions is cited in studies of the elderly in
general (Krout, 1983; Wolinsky & Arnold, 1988).

Collins et al (1991) cite two categories of caregiver attitudes towards
community services; 1) attitudes regarding the acceptability of formal
services and, 2) attitudes about the quality of services. For purposes of
this study the former category will be examined.

Caregiver attitudes about the acceptability of using formal services
include the need to provide all the care required by the impaired elder and
a preference for informal over formal services. Collins & King (1990) cite
the preference to use assistance from family and friends in the care of a
family member with dementia rather than from formal sources as a
commonly occurring attitude among caregivers.

In a survey of a nationally representative sample of 723 adults aged 45
and older, Straw (1991) found that the majority of middle-aged and older
adults (72%) preferred to provide care at home with 44% of these
preferring to have family and friends provide care rather than formal
providers. Perhaps more dramatically, Straw found that even when faced
with around the clock care, 49% preferred to care for a family member at

home.

20

King (1990) notes in a qualitative study of 37 caregivers of AD.
patients, four predominant caregiver attitudes; 1) a sense of family
obligation and responsibility, 2) independence, 3) reciprocity and, 4)
trust. The sample was drawn from a larger volunteer non-random group of
caregivers recruited for a five year longitudinal study of the experience of
providing care to a family member with AD. King found that caregivers
who expressed strong values of family obligation, independence and
responsibility were most likely to provide care without assistance, while
caregivers who valued reciprocity were more likely to use formal
community services.

King's study represents an important effort in the study of the caregiving
process. The use of qualitative data allows the researcher to evaluate
what it is like to care for an individual with dementia. Information that is
gleaned from qualitative studies enhances the understanding of what
motivates individuals to use or not use services. The limitation of King's
and other qualitative studies is the limited sample. King's sample was
drawn from a small geographic region and may not be generalizable to
both urban and rural areas.

The investigation of the influence of caregiver attitudes on the use of
community services is in its infancy. Expanding the knowledge base is
important for several reasons. Knowledge of caregiver attitudes may
reveal when the caregiver is most likely to need services, what services
would be preferred and what types of services would be acceptable. This
information along with other caregiver and patient characteristics may lead

to stronger predictive power in the study of service use. More importantly,

21

however, knowledge of caregiver attitudes may help providers design
programs that better fit the preferences of users leading to more efficient

and cost effective service delivery.

BuraLAttitudes

The study of rural attitudes towards health care is descriptive and for
the most part anecdotal. Barnett & Bigbee (1991) describe rural residents
as strong, individualistic, independent and resistent to big government and
welfare. Rural residents prefer to "tough it out" and will travel great
distances to seek health care only if they are seriously ill. This attitude of
self-reliance may also deter the caregiver/family from seeking assistance.

Bushy ( 1990) points out that the perception of illness as the inability to
work predisposes the rural individual to seek services only when a crisis
stage has been reached. Compounding this attitude is the rural work ethic
where it is felt that those who cannot support themselves are morally
deficient (Bushy, 1990). The thought of going on welfare ”may be so
impalatable that they choose to live without any assistance” (p. 32).

Weinert & Long (1987) studied the perceptions of rural Montanans
towards health, and health needs and services. Descriptive data analyzed
in the study was drawn from a six year study of health related trends in
Montana. Both qualitative and quantitative research methods were used to
better understand the phenomena of rural health.

Qualitative data collection involved ethnographic interviews. Care was

taken to avoid superimposing the cultural biases of the graduate student

22

interviewers by training them as part of their course work. Domain analysis
was conducted and concepts that emphasize the understanding of health
and health needs from the perspective of those living in rural areas were
delineated.

Quantitative analysis evaluated the results of a mailed questionaire
packet including measures of personal resources, depression, anxiety,
perceptions of general health and a comprehensive background
information form.

Results of the data revealed several predominant attitudes. Rural
residents define health as the ability to work. Pain and disability were
rated as less important in determining the individual's perception of overall
health. The concepts of self-help and self-reliance emerged as strong
attitudes among rural dwellers. The authors describe these attitudes as
significant strategies that rural residents use to cape with illness. Family
and close friends are relied upon for support rather than formal service
agencies.

The concept of "newcomers and outsiders" emerged as significant in
that it influences the willingness to accept outside help from the health care
system. The authors suggest that this attitude should influence the type of
community services provided in rural areas. Care must be taken to provide
for continuity of service providers with the involvement of local individuals
as care providers as much as possible in order to establish effective
community based services.

Weinert and Long's study represents an initial attempt to describe the

unique attitudes that rural residents hold towards health and community

23

services. Caution should be taken when interpreting the results of the
study because of the nature of the sample. Rural Montana is uniquely
isolated with much of the land devoted to ranching, which differs greatly
from rural areas in other parts of the country. More studies are needed that
examine rural areas in different geographic locations with comparisons to
non-rural areas before a unified concept of unique set of rural attitudes can
be established.

In summary, the use of community services is postulated to be
influenced by the attitudes of both the individual and the community.
Nurses in advanced practice must be knowledgeable about these attitudes
and their impact on the decision to seek assistance at both the individual
and community level in order to plan and implement programs that are
consistent with the unique culture of the area. The environmental realities
of rural living as well as the attitudes held by rural people must be taken
into account when designing community-based services. It is not sufficient
to simply transplant urban models to rural areas (Coward & Cutler, 1989).
Bushy (1990) states "Because of the rural communities limited resources,
concerted interdisciplinary effort and collaboration are necessary to make
holistic health care a reality for the families who live there” (p. 37). Nurses
in advanced practice can play an important role in this effort both at the

individual, family and community level.

Methods

The methods utilized in this study are presented in this section.
Research design, sample and data collection procedures, operational

definitions, instrumentation and data analysis are outlined.

fieseamhflesign

A secondary analysis was conducted on data collected as part of a four
year longitudinal study of family caregivers of relatives with dementia who
reside in the community (R01-MH 417666-02, "The Impact of Alzheimer's
Disease on Family Caregivers," Principal Investigator 4 Clare Collins,
R.N.,Ph.D.). The study was funded by the National Institute of Mental
Health and conducted at the College of Nursing at Michigan State
University from 1988-1992. The aim of the grant specific to this study was
to describe the level of community service use by the patient, the
caregivers' perception of the availability of, need for and barriers to service
use and sources of information about community services. Data for the
analysis of rural and non-rural differences in attitudes towards community

SSW

SampleEmceduLes

The target population for this study was family caregivers of relatives
with dementia who reside in the community. A- convenience sample of
family caregivers (n=180) was located through mailings distributed by local

chapters of the Alzheimer's Association, the Michigan Association of Adult

24

25

Day Care Centers and health agencies in southwest Michigan. A cover
letter explaining the study and a return postcards were sent to Adult Day
Care Centers, home health care agencies, and geriatric clinics. Clinicians
were asked to distribute information to the families in their agencies.
Families interested in participating in the study were asked to return the
postcard indicating their name, address and the best time to contact them.
A direct mailing was done by the Michigan chapter of the Alzheimer's
Association to individuals on their mailing list using the same card back
system. In addition, recruitment was enhanced by the use of local radio
and television spots and posted information about the study in local
libraries and church bulletins. Potential participants were then screened
by data collectors to determine if they met the eligibility criteria of the study.
The criteria for entry into the study by caregiver/patient dyads included
the following: 1) the patient was at least 55 years old; 2) the patient was
dependent in at least one instrumental activity of daily living (IADL) and
one activity of daily living (ADL); 3) the patient had received a diagnosis
of AD. or other progressive dementia; 4) the caregiver was self-identified
as the family member providing the most care to the relative with dementia;
and 5) the patient with dementia was residing in the community at the time

of data collection.

Datafiollectionfirocedures
Participants in the study were informed that they were participating in a
longitudinal study that would involve several encounters both by telephone

and mail. They were told that participation in the study was entirely

26

voluntary and that they could withdraw at any point. Confidentiality was
explained to the participant and informed consent was signed.

The subjects enrolled at the second data collection point of the study
participated in an extensive telephone interview conducted by a trained
research staff member. Interviewer training procedures are described in
Collins et al, (1988). In addition, each study participant completed the self-
administered booklet containing the Community Service Attitude Inventory
(CSAI) which was mailed to them (Appendix A). Strategies used to retain
participants in longitudinal studies are described in Given, Keilman &
Collins (1990).

Demographic data are presented asit relates to this specific study. The
data regarding demographic background information and results of the
CSAI were analyzed. Prior to any data analysis, the University Committee
on Research Involving Human Subjects at Michigan State University

approved the use of the identified sample for this study (Appendix B).

D I' lDf‘T [1,.”

In this study attitudes towards community services are operationalized
as scores on the five scales of the Community Service Attitudes Inventory
(Collins et al, 1991). The five scales of the CSAI are: 1) concern for the
Opinion of others; 2) confidence in the service system; 3) caregiver
preference for informal care; 4) belief in caregiver independence; and 5)
acceptance of government services. The caregiver was asked to respond

to 64 items of which 25 items constitute the final version of the instrument

27

that measure the five dimensions of attitudes towards community services.
Answers to the individual items were recorded on a four-point Likert scale
and ranged from strongly agree (1) to strongly disagree (4).

Rural residence is operationalized in this study according to the US.
Census definition (US. Bureau of the Census, 1980). Those individuals
residing in cities with populations < 2,500 will be considered rural. In order
to optimize the distinction between rural and non-rural residence, non-rural
residence will be operationalized as residence in a community with a
population > 100,000.

The sample of the present study was formed by selecting all those
cases that met the criteria for rural residence based on the 1980 Census
data. City population size for each case was tabulated and those cases
with populations < 2,500 and > 100,000 were selected for inclusion in the
study. Utilizing this procedure, a sample of n=28 rural cases was ’
identified. The non-rural sample was chosen by selecting all those cases

located in communities with populations > 100,000 (n=43).

Instrumentation

To measure attitudes of family caregivers regarding the use of
community services for the care of a relative with dementia, Collins et al
( 1991) developed the Community Service Attitudes Inventory (CSAI). The
specific methods used to derive the items for the study are described
elsewhere (Collins, Stommel, King & Given, 1991).

Subscales were identified through use of principle component factor

analysis followed by a varimax rotation performed on the selected items

28

(Collins, 1991). Statistical requirements for inclusion of an item in a factor
included a factor loading exceeding .5 on the primary factor with the next
highest factor loading differing by at least .2. In addition, all items that met
these statistical criteria were further examined for theoretical fit with the
subscales. The formation of seven scales resulted from these procedures
with a total of 34 items. Two of the derived subscales (Need for Information
and Perception of Service Availability) did not measure attitudes towards
community services and are not included in this study. lnterscale
correlations were low ranging from .11 to .38, suggesting that the scales
reflect distinctive attitudes. Cronbach's Alpha was chosen to evaluate
internal consistency of the CSAI scales. The coefficient alphas of the
scales ranged from .74 to .84. The final version of the CSAI is a 25 item
self-administered instrument using a four point Likert scale for scoring. A
score of 1 = strongly agree, 2 = agree, 3 = disagree and 4 = strongly
disagree.

Construct validation was tested by predicting a relationship between
scores on the CSAI scales and two measures of present and past service
use of three specific community services (visiting nurses, home-health
aides and adult day care). Predictions were based on: 1) the frequency of
current service use (within the 3 months prior to the interview), and 2) the
number of these services (0-3) ever used for the care of the individual with
dementia. Construct validity was supported by these analyses. There is
further evidence to support content and construct validity based on the

procedures utilized in the initial derivation of the items (Collins et al, 1991).

29

The CSAI represents an initial attempt to measure one aspect of the
complex issue of understanding the use of community services by
caregivers of individuals with dementia. Initial analysis of the psychometric
properties of the scales reveals adequate reliability and content validity of
the instrument, however further testing of construct validity is needed.
Criterion-related validity is incomplete due to the use of only three
community services and only two measures of service use.

As of this date, the CSAI has been tested on only one sample of
caregivers. This sample was 93% white with the majority having at least a
high school education and residing in urban areas in Michigan.

In addition, the mean duration of caregiving was greater than 5 years.
The instrument should be tested further in clinical settings with more
heterogeneous samples of caregivers at different stages of caregiving
including individuals with different socioeconomic backgrounds, living in
different geographic regions and of different ethnic and cultural

backgrounds.

DataAnalitsis

Descriptive statistics were utilized to analyze characteristics of the rural
and non-rural samples. Demographic characteristics of the caregiver and
the caregiving situation are presented. Caregiver characteristics include;
sex, age, race, marital status, relationship to the patient, living
arrangements, household income, educational level and employment

status. Characteristics of the caregiving situation include patient diagnosis

30

and duration of caregiving. Differences in the demographic variables
between the rural and non-rural groups were analyzed using Chi-Square
and ANOVA statistics.

The demographic background variables that were found to be
confounders for the dependent variables (attitude subscales) were
controlled for using the analysis of covariance (ANCOVA) statistical
technique. ANCOVA tests the significance of differences in group means
after adjusting the scores on the dependent variable (attitudes) to eliminate
the effects of the covariate (Polit & Hungler, 1987).

The unit of analysis for study was the individual respondents with two
identified residential groups. Two-tailed tests with the level of significance

at .05 were performed. Data was analyzed using the SPSS-PC statistical
program.

Results

The findings described in this section are compiled from the self-
reported CSAI questionaires of the 28 rural and 43 non-rural subjects
eligible for this study. Tables showing sociodemographic and scale
characteristics of the samples and tables giving the results of the data

analysis are included.

The original sample (n=182) from which the rural and non-rural
samples were drawn were predominantly white (85%), female (76%),
spouses (68%) residing with the patient in the same household (90%).
Ninety percent of the total sample were married with at least a high school
education (85%). The majority of the caregivers were unemployed (67%)
caring for a family member with a diagnosis of AD. (81%). The average
household income was approximately $31,000 and the average caregiver
age was 62.8 years. The average years of caregiving was more than five
years (X=5.1, SD=11.1). Table 1 presents the sociodemographic
characteristics of the rural (n=28) and non-rural (n=43) samples selected

from the original sample.

31

32

Table 1
Demographic Variables for the Rural and Non-Rural Samples
Rural Non-Rural

Caregiver Group Group
Characteristic. (n_=_28)L Ins-.43)
Sex

Male 14% (4) 23% (10)

Femda 88% (24) 77% (33)
Race

Wk 96% (27) 77% (33)

hbn—Wtits 4% (1) 23% (10)
Living Arrangement

liveswih 89% (25) 95% (41)

Does not live with 11% (3) 5% (2)
Relationship

W 64°/o (18) 60%) (26)

Non-Spouse 38%(10) 40% (17)
Marital Status '

Matted 89% (25) 86%(37)

MW 11% (3) 14% (6)
Educdion

GradeSchool 21% (6) 16% (7)

tigtSchool 72% (20) 54% (23)

OolegeGat 7% (2) 30% (13)
Employment

Eiruoyad 25% (7) 37% (16)

Not Empbyed 75% (21) 63% (27)
Patient Diagnosis

AD. 82%(23) 81% (35)

Other 18% (5) 19% (8)
Household Income

Mam $26,410 $32,573

SD $17,363 $20,020
miller-Wears)

Mean 61.0 62.6

S) 129 10.6
Duration of Caregiving

MI 5.6 4.8

SD 4.1 5.3

33

Chi-square tests of significance (T able2) between the rural and non-
rural samples reveals a significant difference (p=.025) in the racial
composition of the two groups with significantly more non-white caregivers

residing in non—rural areas.

Table 2

Chi-Square Tests for Differences In Group Means

Maflabie CHESquaLe Exams
Set 86 .35
R319 5(5 .02
Liv’ng Arraigamant .95 .33
Relaicmlb to Pt. .11 , .75
Maid Status .16 .69
Educ!) 625 .18
Errploymart .96 .33
Pater! D'agfoa's 1.03 .71

Table 3 presents the tests for the differences in mean income, caregiver
age and duration of caregiving between the rural and non-rural samples.
No statistically significant differences were found between the rural and

non-rural samples on these variables.

34

Table 3
ANOVA for Differences in Group Means

income

Between Groups 1 6318304076 6318304078 1.75 .19
Within Groups 67 24163807274 3606538399

Total 68 24795637681

Age

Between Groups 1 4241 42.41 .32 .57
Within Groups 89 9240.46 133.92

Total 70 9282.87

Duration of Core

Between Groups 1 1636.53 1636.53 .48 .49
Within Groups 67 229078.80 3419.09
Total 68 230715.33

In summary, the rural and non-rural samples are composed of mainly
elderly, white middle-classed women who are unemployed and caring for
their spouses in the home. The majority of the sample has at least a high
school education and have been caring for their relative for approximately
five years. The only statistically significant demographic difference
between the rural and non-rural samples was found to be in racial
composition. The demographic characteristics of the caregivers in this

study reflects the caregiver profile shown in previous studies with the

35

majority of dementia caregivers being female (spouses, daughters and
daughters-in-law) and caring for their relative in the home (Bass, 1985).
Noelker & Wallace (1985) described the average number of years of
caregiving as approximately five years which is identical to the findings in

the original sample and in the present study.

WWW

Subscale characteristics for both the rural and non-rural samples are
presented in Tables 4 and 5. Cronbach's Alpha was utilized to determine
the internal consistency of the Community Service Attitude Inventory
subscales. Polit & Hungler (1987) describe alpha coefficients of .60 -.70
as adequate levels of reliability when making group-level comparisons.
The coefficient alphas of the subscales for the original sample ranged from
.74 to .84. Similar results were found with the rural and non-rural samples
in the present study. Alpha coefficients for the rural sample ranged from

.74 to .82 and for the non-rural sample from .74 to .84.

36

Table 4

Scale Characteristics of Rural Sample

Scale Scale Sade Cronbach‘s Memlnteritem

Subscales Mean _SJL _Bange Alpha Correlation
Concern for 1.93 .30 1.3 - 2.2 .82 57
Opinion of Others

Confidence 'n 2.47 .21 2.0 - 2.8 .78 .47
Service System

Preference for 2.27 .26 1.7 - 2.7 .76 .66

informal Care

Belief in Care- 2.61 .28 1.7 - 3.2 .74 .65
giver Independence

Acceptance of . 2.77 .32 2.0-3.3 .74 .74
Gov‘t Assistance

37

Table 5

Scale Characteristics of Non-Rural Sample
Scale Scale Scale Crcrbach's Meanlnteritem

Subscales Mean SJ). Range Alpha. Correlation
Concernfor 1.94 .31 1.3 - 2.5 .84 .60
Opinion Others

Confidence'n 2.52 .19 2.1 - 3.0 .78 .46

Service System

Preference for 2.43 .28 1.7 - 3.0 .76 .66
informal Care
Belief in Care- 2.48 .33 1.7 - 3.7 .74 .65

giver independence

Acceptance of 2.70 .29 2.0 - 3.3 .74 .74
Gov’t Services

lnterscale correlations for both samples were computed to test the
degree of relationship between the individual subscales (Tables 6 & 7).
lnterscale correlations for the rural sample ranged from -.24 to .30. Ranges
for the non-rural sample were from -.29 to .31. Directional changes in the
correlations are noted between the two samples with absolute difference
ranges from .09 - .59. For example in the rural sample Concern and
Confidence are positively correlated (.30) while in the non-rural sample
they are negatively correlated (-.29). These findings suggest that the

attitude structure between the two groups may be different. Despite

38

directional differences, the over-all low lnterscale correlations suggest that
the subscales do represent distinct attitudes and supports the use of the
separate subscale scores to reflect individual attitudes rather than the use
of the total CSAI score. Similar results were found with the original sample
(Collins, 1991 ).

Table 6
lnterscale Correlations of Rural Sample
Subscales Concern Confidence Jntorrnal _lndependenoa Gov}

Concern .30 -.12 .19 -. 19
Cum .01 -.02 -.10
“and -.07 -.24
W -.22
Gov't '

Table 7

lnterscale Correlations of Non-Rural Sample

SubscalesfionoemConfldenoeinformalJndependenoeGofl

Cam -29 .(B -.12 .01
Gallium .07 .20 .04
HOWE .11 .31
hdependmca -.13

Gov't

39

ComparisorLoLMeanficoreeonAmtudefiubsoales

Two-tailed t-tests were computed to test for observed differences
between group subscale means for the rural and non-rural samples (Table
8). Pooled variance estimates were utilized because the ratio of the
sample variances to each other fell within acceptable limits (.5 - 2.0).
Statistically significant differences between the rural and non-rural groups
were found in attitudes towards the use of informal care. Significantly
more non-rural caregivers preferred to use community services rather than
family or friends, while caregivers in rural areas preferred the assistance

of family and friends

Table 8 '
T-Tests for Observed Group Differences

Concern

Rita 1.93 .30 .06 t=-.14 dt=62 p=.89
Non-File 1.94 .31 .05
Confidence

ma 2.46 .21 .04 t=-1.07 «11:59 p=29
Nat-Fire 252 .19 .03

informal Care

Rural 227 .26 .05 1:229 df=64 p=.02
Nat-Flue 2.43 27 .04

independence

Bud 2.61 28 .06 1:1.60 df=59 ' p=.12
Nat-Rue 248 33 .06

Gov't

me 277 .31 .06 1:94 (11:02 p=.35

Nth-Bud 270 .29 .05

4O

AnalysisoLCovariance

ANCOVA was computed next to test for the significance of differences
in group means after first adjusting the scores on the dependent variables
to control for the effects of race. Race was chosen as the covariate
because a significant difference was noted in the racial composition of the
rural and non-rural samples with more non-white caregivers living in rural
than non-rural areas. In addition, the dimension of race has been shown
historically to account for cultural and ethnic differences between groups
which theoretically may influence attitudinal predispositions.

Table 9 presents the results of this analysis. When the demographic
variable of race was controlled, no significant differences were noted
between the two groups. The significant difference in the bivariate
analysis on the dimension of preference for informal care became

insignificant (p = .055) when the covariate was added to the equation.

41

Table 9
ANCOVA for Adjusted Group Differences

Souroeoularianoe d1 finmoffiquares Mean_Souare EBatio _EBrob
Concern for
Opinion of Others

Ma'i Effect 2 251 .125 1.405 .253
Ham 1 .249 .249 2.290 . 100
Gap 1 .(D7 .007 .(B3 .775
Expia'ned 2 251 .125 1.405 .253
Reside 61 5437 .(B9
Toe 63 5687 .090
Confidence in
Service System i
Man Effect 2 .052 .026 642 .530
Rma 1 .006 .006 157 .693
Gap 1 m4 .034 825 .367
Expia'ned 2 .(52 .026 642 .530
Plasma 58 23m .041
Tote m 2422 .040
Preference for
Informal Care
Ma'i Effect 2 441 221 31152 .055
Race 1 .059 .059 .817 .370
Gap 1 .82 282 3876 .053
Expla'ied 2 441 .221 3.032 .055
Pesimd 63 45% .073
Tad 65 5027 .077
Belief In Caregiver
independence
Man Elisa 2 .515 258 2&4 .076
Race 1 2m .2& 2746 .103
Gap 1 .115 .115 1.207 .276
Expand 2 .515 258 2694 .076
Reside 58 5544 .096
Total 5) 6059 .101
Acceptance of
Gov’t Service
Man Effect 2 .124 .0& .670 .516
Race 1 .044 .044 .472 .495
Gap 1 .107 .107 1.159 .286
Expired 2 .124 0% .670 .516
Rasichd 61 5&6 .092
Tow 63 5750 .091

Discussion

Study findings are interpreted in this section. First, an overview of the
findings is given, followed by discussion of the limitations of the study and
suggestions for future research. Finally, implications of the study results in
terms of Noelker & Bass’s Model of Community Service Use and the
Clinical Nurse Specialist’s role in the primary health care setting are

presented.

Besearchfluestion

The research question stated in the study was, "What are the
differences in caregiver attitudes towards community service use between
rural and non-rural residents?" Bivariate data analysis revealed no
significant differences in the attitudes of rural and non-rural caregivers
towards community service use on four of the five attitude subscales in this
study. Significant differences were noted in the preference for the use of
informal care. Rural caregivers preferred to use their informal support
network of family and friends to provide care, while non-rural caregivers
showed a preference for the use of community services. This interpretation
supports the theory that a unique rural attitude of "self-reliance" may exist
and that rural caregivers may chose to rely on informal networks to care for
their family member. Such an attitude would serve as a predisposing
factor which leads to an inclination to use or not use community services.

Demographic characteristics such as age, sex, race, residence,

educational and economic level are some of the variables that define an

42

43

individuals unique set of attitudes and values. In the present study, only
race was found to be significantly different between the rural and non-rural
groups. Preliminary analysis of the affect of race on the preference for
informal care revealed no significant residential differences. interpretation
of this finding, however, is limited and inconclusive due to the small size of
the sample with only one non-white caregiver in the rural group and ten in
the non-rural group. Other factors not measured in this study such as
ethnic and cultural background may account for some of the variance
noted between the groups on this subscale. Further study of the affect of
race on the preference for informal care, utilizing a larger sample, is
necessary to provide stronger evidence of its contribution to the observed
variance between the two groups. '

Availability and knowledge of services was not researched in this study
so that it is not possible to determine if lack of community services in rural
areas may have influenced the respondents preference for informal care
rather than any innate attitudinal predisposition. Non-rural caregivers may
show a preference for community services simply because they are
available and accessible to them.

The subscale that assesses caregiver preference for informal care
simply asks the question if the family caregiver would rather use members
of their informal support network or community services to help care for
their relative with dementia. This subscale may not be an adequate
measure of the dimension of “self-reliance” in that other considerations
such as transportation and finances may affect an individual’s response.

The rural health and dementia caregiver literature presents evidence that

44

both these populations prefer informal care and in fact tend to care for their
loved ones independently until near institutionalization and/or death.

Caregiver attitudes regarding caring for a relative with dementia may
not be reflective of an individual’s general mode of responding. The need
for independence in the care of a family member may not be equivalent to
“self-reliance” in other areas. Caregiver attitudes may be more emotionally
laden in that the burden that is associated with dementia care may serve to
modify an individual’s normal mode of response. Dementia care often
carries with it the stigma of mental illness while care of the physically ill or
frail elder does not. Dementia caregivers may chose to isolate themselves,
poroviding all the care because of the shame associated with the behavior
and actions of their demented relative.

Caring for an individual with dementia requires specialized training in
order to cope with both the physical and behavioral manifestations of the
disease. The availability of trained dementia caregivers may, therefore,
play a role in a caregiver’s preference for informal care. Caregivers may
chose to rely on family and friends rather then the help of unskilled
workers. Finally, reimbursement issues may also affect the choice of
services. Lack 01 financial support for the use of such services as visiting
nurses and respite care for the dementia patient may force families to rely
on their informal support systems. '

Also of interest are the non-significant findings of the study. Caregivers
in both the rural and non-rural groups expressed lack of confidence in the
service system and concern for the opinion of others as well as

disagreement with the use of government assistance. These attitudes are

45

consistent with what is known about dementia caregivers in the existing
literature. Contrary to these findings are the results of the caregiver
independence subscale. The majority of caregivers disagreed with the
idea of caring for their family member without outside assistance. These
caregivers may be at a point in the caregiving situation where they are no
longer able to cope without help and have modified their attitudes to
accommodate.

Attitudes have been conceptualized as multidimensional characteristics
rather than as unidimensional attributes (Allport, 1935). They are acquired
through the influence of the environment around us but no strong
conceptual definition of how attitudes interact with other factors exists.
Attitudes have been described as latent and modifiable so that they may
change as the stress level of a particular situation changes. Although not
tested in this study, this may explain some of the apparently conflicting
attitudes observed among the subscales. As stress and burden rises in the
caregiving situation, the caregiver who previously preferred to be
independent may be more inclined to, out of desperation, accept formal
services.

in summary, the results of this study indicate that a significant difference
in the preference for informal care over the use of formal community
services exists between those caregivers living in rural and non-rural
areas. Preliminary analysis of race as a covariate suggests that this factor
may contribute to some of the variance observed, but due to the limited

scope of this study, however, results are inconclusive at this point.

46

This study utilized a convenience or non-probability sample. The rural
and non-rural samples were drawn from the original convenience sample
and were small and fairly homogenous. Sociodemographic characteristics
of both samples were very similar. The majority of cases were white,
married females who were unemployed caring for their family member with
a diagnosis of AD. In addition, the sample consisted of a narrow group of
individuals who were motivated to respond to a request to participate in the
study and does not represent the entire population of caregivers. The
sample was further biased by the fact that a large proportion of individuals
who were already receiving services were referred to the study.

Probability or random sampling would have been the preferred method to
use in this study because it would have increased the variability within the
sample reflecting the natural variability within the population of caregivers.

Care was taken to differentiate as much as possible the rural from the
non-rural group, but because of the constraints of using secondary data it
was impossible to determine the length of residence in a specific
geographic region. The possibility exists that the rural sample did not truly
reflect a “native” rural group but consisted of “transplanted” retirees from
urban areas. it was also not possible to evaluate whether those cases in
the rural sample were living in frontier (open country) versus farming
communities. The unequal distribution of race among the two groups is
also a limitation of this study, limiting its utility as a covariate in the

analysis.

47

The CSAI is anew instrument and has not been tested on a variety of
caregiving populations. Reliability and validity of the instrument have not
been established conclusively. Validity with community service criteria has
been established but validation with other attitudinal scales has yet to be

performed.

BecommendationsjoLEutureBesearcn

While results of this study fail to provide strong evidence for differences
in attitudes towards community service use based on geographic
residence, it does serve as an initial attempt to address the need to
consider caregiver attitudes as predisposing factors which may influence
the use of community services. This study should be replicated on a larger
scale with a more heterogeneous caregiver sample.

Emphasis should be on inclusion of those caregivers who are not
motivated to respond to study requests and who are not currently using
community services. Length of residence should be assessed to
differentiate between those rural dwellers who are “native” and those who
are “transplanted”. Efforts should be made to enroll participants from those
areas defined as the “rural frontier” of the country. Finally, the contribution
of racial, ethnic and cultural influences should be investigated thoroughly.

Further investigation and refinement of the Community Service Attitude
Inventory is necessary. Correlation with other standardized attitude
inventories will substantiate its construct validity. The CSAI should be
tested on other diverse groups of caregivers within different clinical
settings such as with individual’s caring for physically disabled, chronically

48

ill, and terminal patients. The CSAI should be utilized to investigate
patterns of attitudes and to examine those combinations of attitudes that
lead to service use.

Finally, qualitative research should be conducted to better define the
caregiving situation of dementia caregivers. Further investigation of the
factors that motivate caregivers to seek services and those decision points
that lead to service use should be explored utilizing qualitative and
quantitative techniques. An examination of the relationship of attitudes
and use would expand our knowledge of the combination of factors that
contribute to service utilization and guide the design of more efficient, cost-
effective programs.

ll'I'fll IlI'EI'.

Noelker & Bass's Model of Community Service Use postulates that
"predisposing factors" are those characteristics that exist prior to service
need which influence the decision to use or not use community services.
Attitudes towards community service use and geographic residence were
viewed within this study as predisposing factors which influence a
caregiver’s inclination to use or not use community services. Results of
this study failed to support significant differences between rural and non-
rural caregivers.

While findings from this study don’t provide strong support for rural/non-
rural differences, the CSAI along with the Noelker & Bass model may be
useful if utilized on an individual case basis in clinical practice as a part of
an assessment protocol. Information regarding a client/family’s attitudes
towards community services and other predisposing, enabling and need
factors may help guide the provider’s referral to the most appropriate and
acceptable community service.

 

49

The Noelker & Bass model provides a non-nursing framework for
viewing the factors which influence the decision to use or not use services.
Leininger’s (1978) theory of transcultural nursing provides a nursing
framework for the assessment and intervention strategies employed by
nurses in advanced practice. Leininger’s theory was chosen because it
views health in terms of the beliefs, values and action patterns that are
culturally known and used to preserve and maintain personal or group
well-being.

This perspective enables the CNS to assess individual caregivers as
cultural beings who must be viewed in the context of physical, ecological,
social and world views. Health in Leininger’s theory may be perceived
differently according to one’s cultural background and should not be
defined only in terms of criteria set by health care professionals. The CNS
working with rural clients must be cautious to assess and recommend
intervention strategies that are in keeping with the individual needs and
perceptions of the area in which she is working. To simply transport
services that may be appropriate in urban areas is not necessarily
appropriate for rural areas.

Nursing in Leininger’s theory is defined as providing human care to
people in a way that is meaningful, congruent and respectful of cultural
values and life styles. Leninger defines culture as “the learned, shared
and transmitted values, beliefs, norms and lifelong practices of a particular
group that guides thinking, decisions and actions in patterned ways
(Leininger, 1985, p. 209). Culture as defined by Leininger can be as
diverse as the multitude of ethnic groups that make up humankind or as
specific as her study of inner-city Black families in Detroit. Using
Leininger’s framework, the CNS working with rural caregivers must fully
appreciate the culture in which she practices before she can effectively

 

 

50

design intervention strategies to meet their needs. This includes not only
beliefs about health and illness, but also the social structure in which they
live, is those predisposing and enabling factors which contribute to the
decision to use or not use community services.

The CNS in primary care functions in many roles: communicator,
collaborator, coordinator, educator and patient advocate. The CNS
functioning in a case management model of care delivery incorporates all
aspects of the role into her practice. Menard (1987) describes case
management as a viable opportunity and alternative for the CNS who
wants to extend her practice to groups of clients. Clients living in rural
areas are one group that has been identified as appropriate for case
management.

Case management provides the CNS with a means for assisting
families and providers to use health and social services in the most
appropriate, cost-effective and efficient means possible (Parker et al,
1990). Case management involves the assessment, planning, service
coordination and/or referral, monitoring and reassessment of the multiple
service needs of the client. The CNS functioning as a case manager may
also carry her own case load providing expert clinical and educational
skills.

Many barriers exist in rural case management such as fewer services
and providers and poor transportation. The CNS can serve as a link
between the use of those formal community services that do exist and the
informal support network. The CNS may also act as a case-finder in rural
areas, matching clients to the formal services and coordinating the informal
support network of the individual by providing support, acceptance and
assistance.

51

Sparacino, Cooper & Minarik (1990) describe case management as a
model of health care delivery that has generated great enthusiasm for the
CNS role. The CNS has the appropriate educational preparation and
practice experience to address the issues of health assessment, resource
assessment, planning and delivery of health care services and the
advocacy that characterizes case management. The goals of case
management are continuity of care, provision of personalized care along a
continuum, and cost containment (American Nurses Association, 1988).
The CNS who utilizes knowledge of predisposing, enabling and need
factors as well as knowledge of the cultural influences predominant in the
area in which she practices as a part of her assessment protocol will be
better prepared to meet the health care needs of her clients.

Clinical Nurse Specialists in 1993 are in the position to affect the
development of quality community service programs. CNS's have the
advanced training necessary to evaluate health care needs and delivery at
the client/family level as well as at the local and national level. The CNS
serves as a patient advocate, enhancing consumer access to primary
health care services by delivering those services in the community. The
current move towards health care reform in the United States mandates
that the issues of better access, affordability, availability and, acceptability
be addressed. Nurses in advanced practice have the knowledge and
skills to be at the forefront of this reform.

 

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APPENDIX A

APPENDIX A
Community Service Attitude inventory Items

CSALSubscaies
Concern for the opinion of others
Pe0ple outside my family would think less of me if I used services.
My family would think less of me if I used services for my relatives care.
My family prevents me from using services for my relative.
Families should not use community services to care for a relative with
Alzheimer’s disease.
I do not want others to know my relative has Alzheimer’s disease.
My family supports my use of community services.
Confidence in the service system
People from community services can take care of my relative as well as
I can.
I am fearful of having people from community services take care of my
relative.
i trust people from community services to take care of my relative.
People from community services would follow my directions in caring
for my relative.
It is hard to trust someone from community services to take care of my
relative.
People from community services might be better at caring for my
relative.
I worry about my safety when someone else is taking care of him/her.
Community services might have better ideas about caring for my
relative.

58

59

Preference for informal care
i would rather use community services than ask for help from my family.
I would rather use community services than ask for help from friends.
I would rather ask my family for help than use community services.
I would rather ask my friends for help than use community services.
Belief In caregiver independence
I am proud of being able to care for my relative with little help from
community services.
I believe in the idea thatfamilies should care for their own and not ask
for outside help.
I think I should care for my relative without help from community
services.
I feel good about using community services to help care for my relative.
Acceptance of government services
It is not the government’s responsibility to help me find ways to care for
my relative.
I would use more services if the government would provide more
assistance.
I believe the government should support more community services to
help families care for persons at home.

APPENDIX B

APPENDIX B
U.C.R.I.H.S. Approval

MICHIGAN STATE UNIVERSITY

 

mummmroamaar mm-mm-am—Ioa
memormcnouunaroor.
October30.l992

TO: Janet Woods

1647 Forest Hills Dr.
manna. MI 43364
RE: IRB I: 926"

TITLE: A COMPARISON OF THE DIFFERENCE IN THE ATTITUDES TOWARD
COMMUNITY SERVICEUSBOPDEMENTIACAREGNERSUVNGINRURAL
AND NON-RURAL AREAS

CATEGORY: l-B

REVISION REQUESTED: NIA

MOVAL DATE: chber ZI. I992

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lf'we can be of any fume help, please do not hesitate to contact us at (5”) 355-2180 or FAX (517) 336-1171.

Sincerely.

 

MSU ‘- . Alfie-Iain Aruba/Equal “pen-nay rum-m.

60

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