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thesis entitled

THE IMPORTANCE OF ATTITUDINAL AND NORMATIVE COMPONENTS
IN THE SELECTION OF A CARE FACILITY BY WIFE AND
DAUGHTER CAREGIVERS OF PERSONS WITH DEMENTIA

presented by

Melanie Powers Low

has been accepted towards fulfillment
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Master of Science degree in Nursinq

 

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THE IMPORTANCE OF ATTITUDINAL AND NORMATIVE COMPONENTS
IN THE SELECTION OF A CARE FACILITY BY WIFE AND
DAUGHTER CAREGIVERS OF PERSONS WITH DEMENTIA

BY

Melanie Powers Low

AN ABSTRACT OF A THESIS
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

MASTER OF SCIENCE IN NURSING

College of Nursing
1997

Chairperson: Clare Collins

ABSTRACT
THE IMPORTANCE OF ATTITUDINAL AND NORMATIVE COMPONENTS

IN THE SELECTION OF A CARE FACILITY BY WIFE AND
DAUGHTER CAREGIVERS OF PERSONS WITH DEMENTIA

BY

Melanie Powers Low

The purpose of this study is to answer the question,
“Are there differences between wife and daughter caregivers
in the extent to which specific attitudinal and normative
components influence their selection of a care facility?”
The included 35 wife and 23 daughter caregivers of a
relative with dementia. The design instrument was a
retrospective, descriptive analysis of data obtained by
telephone questionnaire. Using the Theory of Reasoned
Action, developed by Ajzen and Fishbein (1980), caregiver
relationship was analyzed for its significance in
influencing intentions and behaviors. Statistical analysis
found that both wife and daughter caregivers ranked
attitudinal components as most influential. Closeness of
location was determined to be different between groups with
daughter caregivers identifying this factor as influential
in their decision more frequently than wives. Included is a
discussion of how the findings of this study can guide the
APN in developing successful strategies for assisting
caregivers in making placement decisions and recommendations

for future research.

ACKNOWLEDGMENTS

I wish to gratefully acknowledge the assistance of my
chairperson, Clare Collins. Her timely and numerous e-
mailings conveyed volumes and made her presence felt as
though she were in the room with me rather than miles away.
Gratitude is also due the other members of my committee,
Linda Keilman and Laura Struble, who helped me maintain my
sanity with their flexibility and willingness to adhere to
an outrageous time line in order for me to meet my self
imposed deadlines. I would like to thank my friend and
colleague, Suzie Ivkovich. Her daily phone calls of
encouragement helped to keep me focused and not loose heart.
I would also like to thank the Care Management staff at
Holland Hospital who were supportive throughout my entire
graduate schooling. Their sense of humor renewed my spirits
on many occasions. Also deserving of appreciation is Nancy
Cunningham who guided me through the statistical analysis of
the data with an enthusiasm that was contagious. I wish to
express a special thank you to my mother and father who
taught me the value of education and the wonderfulness of
family. To my husband Brian and daughters, Michelle and

Rebecca, I extend my deepest gratitude. They never once

iii

wavered from their support despite the many sacrifices they
each made in order to allow me to see this journey to its

end.

iv

TABLE OF CONTENTS

LIST OF TABLES . . . . . . . . . . . . . . . . . . . .
LIST OF FIGURES O O O O O O O O O O O O O O O O O O O 0

INTRODUCTION . . . . . . . . . . . . . . . . . . . . .
Background . . . . . . . . . . . . . . . . . . . .
Dementia and Caregiver Decision to

Institutionalize . . . . . . . . . . . . . . . .

REVIEW OF LITERATURE . . . . . . . . . . . . . . . . .
Attitudinal and Normative Components in the
Selection of a Care Facility . . . . . . . . . .
Caregiver Gender and Relationship . . . . . . . .
Research Question . . . . . . . . . . . . . . . .
Conceptual Framework . . . . . . . . . . . . . . .

METHODS . . . . . . . . . . . . . . . . . . . . . . . .
.Design . . . . . . . . . . . . . . . . . . . . . .
Present Study' . . . . . . . . . . . . . . . . . .
Sample . . . . . . . . . . . . . . . . . . . .
Data Collection and Instrumentation . . . . . . .
Operational Definitions of Variables . . . . . . .
Protection of Human Subjects . . . . . . . . . . .

RESULTS . . . . . . . . . . . . . . . . . . . . . . . .
Sociodemographic Characteristics . . . . . . . . .
Frequency of Response on Individual Items . . . .
Most Influential Components . . . . . . . . .
Frequency of Response of Attitudinal and Normative

Components . . . . . . . . . . . . . . . . . . .

DISCUSSION . . . . . . . . . . . . . . . . . . .
Methodological Limitations . . . . . . . . . . . .
Instrument Limitations . . . . . . . . . . . . . .
Interpretation of Findings . . . . . . . . . . . .
Implications for Advanced Practice Nursing and

Primary Care . . . . . . . . . . . . . . . . . .
Recommendations for Future Research . . . . . . .

Page
vii
vii1
. 1
. 1
. 4
. 6
6

. 13
. 18
. 18
. 24
. 24
. 25
. 25
O 27
. 29
. 32
. 32
O 33
. 35
. 35
37

. 41
. 41
. 41
. 43
. 47
. 51

TABLE OF CONTENTS (cont.)

Page
SUMMARY . . . . . . . . . . . . . . . . . . . . . . . . . 56
LIST OF REFERENCES . . . . . . . . . . . . . . . . . . . 57
APPENDICES

Appendix A: Institutionalized Survey . . . . . . . . 63
Appendix B: UCRIHS Approval Letter . . . . . . . . . 64

vi

LIST OF TABLES

Page

Table 1. Demographic Variables for Wife and Daughter

Caregiver Samples . . . . . . . . . . . . . . . 34
Table 2. Frequency of Response on Items by Wife and

Daughter Caregivers . . . . . . . . . . . . . . 36
Table 3. Most Influential Components by Wife and

Daughter Caregivers . . . . . . . . . . . . . . 38
Table 4. Types and Frequency of Response of Other

Factors . . . . . . . . . . . . . . . . . . . . 40
Table 5. Frequency of Response of Attitudinal and

Normative Components . . . . . . . . . . . . . 40

vii

LIST OF FIGURES

Page
Figure 1. Indirect Effect of External Variables on
Behavior Using the Theory of Reasoned Action . 20
Figure 2. An Adaptation of the Reasoned Action Model
Based on Ajzen & Fishbein's Theory (1980) . . . 23

viii

INTRODUCTION

Background

Among wife and daughter caregivers, what is the extent
to which the type of relationship between caregiver and
recipient influences attitudinal and normative
considerations when choosing a care facility for a relative
with dementia? Attitudinal considerations are facility
characteristics that the caregiver believes are important.
Normative considerations are the recommendations of the
facility by salient others. In recent years there has been
an explosion of interest in elderly individuals living in
the community and the caregivers who support them. Of the
research done on caregiving, a significant percentage has
focused on the dementia caregiver. However, despite the
gravity of the decision to institutionalize and the
ramifications to both the person with dementia and the
caregiver for choosing a particular care center, knowledge
remains sparse concerning the components caregivers consider
during the selection of a care facility for their relative
with dementia. This lack of attention is surprising given
the prevalence and pervasiveness of dementia in our society
and the fact that nearly half (46.7 percent) of all long

term care facility residents are diagnosed with Alzheimer's

2
disease or some form of dementia (U.S. Department of Health
and Human Services, 1991).

Equally confusing is the treatment of caregivers by some
researchers as one large, homogenous group (George &
Gwyther, 1986; Johnson, Morton, & Knox, 1992; Wilson, 1989).
In some studies patient demographics are given but no
specificationof the relationship between the caregiver and
recipient (Pratt, Schmall, Wright, & Cleland, 1985).
However, a growing body of caregiving literature is
providing evidence that there are inherent differences
between a spouse and an adult child caregiver (Deimling,
Bass, Townsend, & Noelker, 1989; Deimling & Looman, 1993;
Harper & Lund, 1990; Montgomery & Kosloski, 1994). In the
research that has considered different categories of
caregivers, there is strong suggestion that gender of the
caregiver and kinship to the recipient does impact the
caregiving experience. For example, female caregivers
experience greater caregiver burden (Miller & Cafasso, 1992;
Young & Kahana, 1989) and elderly individuals cared for by
an adult child are consistently at greater risk for
institutionalization (Colerick & George, 1986; Dolinsky &
Rosenwaike, 1988; Lieberman & Kramer, 1991; Montgomery &
Kosloski, 1994; Morycz, 1985). What is not known is how the
female caregiver recipient relationship affects caregivers'
preference for attitudinal or normative components in care

facility selection.

3

The decision to institutionalize a relative with
dementia is likely to be made by considering the joint needs
of both the dependent elder and the caregiver making the
decision (Colerick & George, 1986). Given the differences
in wife and daughter caregivers in terms of role
expectations, competing demands, and the nature of the
relationship itself, it would not be surprising to find
significant differences between these two groups of
caregivers in their preferences regarding attitudinal and
normative components in the selection of a care facility.
Clearly, there is a need for further research into the
impact of caregiver relationship on the decision making
process as it relates to care facility selection.

The Advanced Practice Nurse in primary care is in a
unique position to assist wife and daughter caregivers in
the selection of a care facility for their relative with
dementia. However, effective assistance can only be
provided if a sound understanding is acquired of the
importance these population of caregivers place on
attitudinal and normative components in the selection of a
care facility. The purpose of this study is to answer the
question, fiAre there differences between wife and daughter
caregivers in the extent to which specific attitudinal and
normative components influence their selection of a care

facility?"

4
E l' i . . . l I 1'! 1' 1‘

“Dementia describes impaired intellectual functioning"
(Carpenito, 1993, pp. 785). The major symptoms involve
memory impairment and one or more cognitive deficits
sufficiently severe to interfere in occupational or social
functioning (Jarvis, 1996). Alzheimer's disease is the most
common cause of dementia in the elderly (Mayeux & Schofield,
1994). Alzheimer's usually begins with minor memory losses,
but as it progresses, personality changes are likely.
Eventually, the individual with Alzheimer's disease will
lose the ability to speak, to care for themselves, and to
recognize family members (Morris, 1996).

By the end of 1992, roughly 4 million Americans were
estimated to be living with Alzheimer's disease and related
dementias (U.S. Department of Health and Human Services,
1993). The proportion of individuals diagnosed with
Alzheimer's disease increases dramatically with advancing
age (Campion, 1994; Ernst & Hay, 1994; Evans et al., 1990).
In their research on estimated prevalence of Alzheimer's
disease in the United States, Evans et al. (1990) reports
that among individuals 65 to 74 years of age, 3.9 percent
have probable Alzheimer's disease while the prevalence rises
to 47.6 percent for those 85 years of age and older. These
figures are particularly alarming given current projections
that by the year 2030, 20% of the general population will be
made up of persons 65 years of age or older (Kennedy, 1993)

with the fastest growing segment of the population being

5
those individuals at or above age 85 (Hickey, Ouimette, &
Venegoni, 1996). In the year 2050, the number of persons in
the United States 65 years of age and older who will be
living with Alzheimer's disease has been projected to be 7.5
to 14.3 million (Evans et al., 1990). Health professionals
who graduate between the years 1990 and 2000 will spend most
of their practice lives caring for the elderly (Shugars,
O'Neil, & Bader, 1991).

It has been well documented that caregiving results in
chronic strain for the caregiver (Chenoweth & Spencer, 1986;
Given, Collins, & Given, 1988; Pratt, Schmall, Wright, &
Cleland, 1985). Often fulfillment of the role of caregiver
occurs only at great personal cost. Family members are
greatly effected, witnessing their relative's gradual
deterioration. Although the timing and sequence of lost
function varies from individual to individual, eventually
the progressive cognitive decline and accompanying impaired
judgement will create the need for continuous care.

Despite the burden of caregiving, the decision to
institutionalize a relative with dementia is not made
lightly or without pain for the family member providing the
care. It is a last resort for many families after having
exhausted all other resources; personal and financial
(Wilson, 1989). Unfortunately, for caregivers placing a
relative in a care facility, a recurring theme is the
description of the decision making process as singular and

isolated (Bell, 1996; Dellasega & Mastrian, 1995). During

6
this time, caregiver stressors are_marked and include
financial concerns, guilt and ambivalence about the
decision, feelings of loss of control, and a lack of self-
confidence in problem-solving abilities (Chenoweth &
Spencer, 1986; Johnson, 1990; Johnson, Morton & Knox, 1992;
Matthiesen, 1989; Pratt et al., 1985). Caregivers
responsible for care facility selection report feeling that
they have had to “muddle through a very important and
stressful time alone, having to find out what they could on
their own and by accident? (Bell, 1996, p. 57). In all the
studies cited on care facility selection, the caregivers
expressed a need for anticipatory guidance and professional
information so that the most informed decision could be
made.

Although a high value is placed on community based care,
it is likely that the decision to seek facility placement
will be faced with increasing frequency as the population
over age sixty-five continues to increase. With the graying
of America, the needs of female family caregivers for
assistance with placement selection will likewise only grow
more pressing.

Review of Literature
; ' 0.0- .go o u. ‘ onpoo-Q .. 0- - - o. o .

Active caregiver involvement in the selection of a care

facility often is an indicator of future satisfaction with

the placement. Not surprisingly, families report greater

7
satisfaction with the care facility if they investigated all
placement sites in the area prior to selection. Less
satisfied are families who report a lack of sufficient time
to evaluate care facilities and who chose the first
available placement (Prawitz, Lawrence, Draughn, & Wozniak,
1991).

Roff (1983) reported that when a general population was
asked to rank order in importance twenty-seven
characteristics they would employ in the selection of a
future care facility, quality of care was ranked highest
(#1). Care by nurses, care delivered by aides, and
qualifications of staff were chosen as the most heavily
influential. This general population also rated cleanliness
(#4) well above location (#10) or availability (#25).

In contrast, York and Calsyn (1977) describe the lack of
sophistication and thoroughness on the part of families
searching for a care facility. In their retrospective
study, the choice of a facility by family members was not
guided by an assessment of the quality of care but rather by
availability (75%) and location (62%). Quality of staff and
quality of physical care, along with cleanliness and cost
were less influential to these families. Because 59% of the
residents in the study were placed directly from a hospital,
it is not surprising that physicians (83%) and social
workers (43%) were credited with impacting the selection
decision. Given the disparity between the results of the

two studies, the implication is that when faced with the

8
actual need to select a care facility, the factors
considered and the process undertaken are often less than
ideal.

Later studies have continued to provide conflicting
results (Bell, 1996; Prawitz, Lawrence, Draughn, & Wozniak,
1994; Roff, 1983; Van Auken, 1992). In a large study
involving individuals who actually selected a care facility,
the most frequently considered attributes of a facility
during the selection process were cleanliness, proximity to
caregiver, helpfulness of the facility's administrative
staff, internal appearance, and quality of nursing care (Van
Auken, 1992).

In another study of care facility selection by family
members, an order of preference was given to quality of
care, appearance, atmosphere, and location. Subsequent
ranking was given to reputation, building safety, quality of
food, cost and finally, activities (Prawitz et al., 1994).

In the most recent study, the criteria of greatest
concern were quality of care, cleanliness of the facility,
and proximity to the family. Because this population
included non-demented elderly, the care recipient's
agreement with the selection was also cited as a variable of
significant concern. Cost was viewed of little consequence
(Bell, 1996).

Advice and information from individuals who had some
experience with the facility being considered, whether they

were health care workers or friends, neighbors, and

9
acquaintances was cited as providing a strong network of
support in numerous studies (Bell, 1996; Van Auken, 1992;
York & Calsyn, 1977). Similarly, the lack of professional
input during the placement process has been given as a
source of increased distress for caregivers (Dellasega &
Mastrian, 1995). While some caregivers believe that
increased involvement by the health professionals would not
have changed the outcome, others have reported that more
input on the part of the physician and other providers would
have been helpful and welcomed (Bell, 1996).

No study of care facility selection that looked
specifically at caregivers of persons with dementia has been
conducted. Of the research reviewed, only York and Calsyn's
(1977) sample mentioned the inclusion of some care
recipients with impaired cognitive functioning. However,
there was no attempt to differentiate care facility
selection of the caregivers of the cognitively impaired from
the non-cognitively impaired. Since the selection of a care
facility is likely to be made based on the joint needs of
the elderly individual being placed and the caregiver making
the decision; it is reasonable to expect that cognitive
functioning of the dependent elder would impact the
decision.

In addition, researchers have tended to treat caregivers
as one large, homogenous grouping. In two of the above
studies on care facility selection, caregiver was synonymous

to responsible party (Prawitz et al., 1991), or family

10
members (Bell, 1996) without any further differentiation.
In York and Calsyn's (1977) study, the family member
interviewed was identified from the care facility chart as
the person to contact in an emergency and could mean spouse,
child, niece, nephew, brother, or sister. Likewise, in the
study by Prawitz and her co-researchers (1994) caregiver
could mean either a child (61%) or other (39%) where other
was left undefined. Only Van Auken's (1992) research
attempted to determine homogeneity of recent and non-recent
decision making groups by testing for statistically
significant differences between the groups on thirteen
background variables.

An attitude is a “relatively stable organization of
beliefs, feelings, and tendencies toward something or
someone? (Morris, 1996, p. 608). Attitudes are acquired
through learning and developed through life experiences.
Attitudinal beliefs are beliefs that a certain behavior will
have certain consequences (Ajzen & Fishbein, 1980). For the
purpose of this study on care facility selection,
attitudinal components will be conceptually defined as
facility characteristics that the caregiver believes will
have certain consequences or outcomes. For example,
location is a facility characteristic that the caregiver may
believe will impact quantity of visitors.

A norm is a.“shared idea or expectation about how to
behave” (Morris, 1996, p. 618). Individuals, by comparing

and adapting their behavior to that of others, fulfill

11
societal expectations and thus conform to the norm.
Normative beliefs are beliefs an individual has that salient
others have a preference as to what behavior is to be
performed and the individual's motivation to comply (Ajzen &
Fishbein, 1980). For the purpose of this study, normative
components will be conceptually defined as recommendations
of the care facility by salient others such as physician,
relatives or friends.

In review, a number of studies have identified factors
influencing care facility selection. However, the
descriptive evidence to date has been somewhat conflicting
in the suggestion of attitudinal and normative components
that are most influential to caregivers in this selection
process. Despite the frequent identification of quality of
care as a major influential factor in facility selection
(Bell, 1996; Prawitz et al., 1994; Roff, 1983; Van Auken,
1992), what constitutes quality can be illusive. In a study
by Roff (1983) quality of care was identified as the
greatest concern to caregivers in the selection process.
Interestingly, in this study, out of 27 listed nursing home
characteristics, state licensure was given a ranking of only
17 despite its implication to quality. Where quality of
care (Bell, 1996; Prawitz et al., 1994; Roff, 1983; Van
Auken, 1992), location (Bell, 1996; Prawitz et al., 1994;
Van Auken, 1992; York & Calsyn, 1977), and cleanliness
(Bell, 1996; Prawitz et al., 1994; Roff, 1983; Van Auken,

1992) of the facility has been identified in numerous

12

studies. It is important to note that other studies (Roff,
1983; York & Calsyn, 1977) have found less emphasis on one
or more of these characteristics. Similarly, availability
(York & Calsyn, 1977), appearance (Prawitz et al., 1994; Van
Auken, 1992), and atmosphere (Prawitz et al., 1994) have
been cited in studies as being significant in the selection
process, and yet one or all have failed to be identified in
other research investigating the same process (Bell, 1996;
Prawitz et al., 1994; Roff, 1983; Van Auken, 1992; York &
Calsyn, 1977). Likewise, numerous studies (Bell, 1996; Van
Auken, 1992; York & Calsyn, 1977) have identified the
recommendation of the care facility by others as a strong
motivator of selection; however, other studies (Prawitz et
al., 1994; Roff, 1983) have failed to even mention this as a
component.

To summarize, the limited research on the factors that
are most influential to caregivers in the selection of a
care facility has revealed the presence of both
consistencies and inconsistencies. Researchers have
addressed the initial decision by caregivers to seek care
facility placement for their relative with dementia and the
caregivers' subsequent reactions to the placement.
Obviously absent are studies involving care facility
selection by caregivers of persons with dementia. Only one
study (Prawitz et al., 1994) looked at the relationship
between the caregiver and the individual being placed, but

the focus was on the gender of the parent as a determinant

13
of influential selection factors. No study was found
involving care facility selection by the unique population
of wife and daughter caregivers of persons with dementia.
: . 3 i i E 1 l' 1'

One of the most consistent findings in caregiver
research is that the majority of family caregivers are
female (Fortinsky & Dushuttle, 1990; Given, Collins, &
Given, 1988; Given, King, Collins, 8 Given, 1988; Given,
Stommel, Collins, King, & Given, 1990; Miller & Cafasso,
1992; Stone, Cafferata, & Sangl, 1987; Stone & Kemper, 1989;
Young & Kahana, 1989). Among spousal caregivers,
approximately 67% of care is provided by women. Among adult
child caregivers, the percentage of women providing the care
jumps to 80-90% (Stone, Cafferata, & Sangl, 1987). The
significance of this finding is substantial given that
studies have found important gender differences in the
provision of care.

Women caregivers are more likely to carry out personal
care and household tasks (Miller & Cafasso, 1992). Male
caregivers are more likely to participate in home repairs,
assist with transportation, and provide financial management
(Stone, Cafferata, & Sangl, 1987; Young & Kahana, 1989). Of
the care provided by females, the care recipients tend to be
more severely functionally impaired than those receiving
care from a male counterpart (Miller & Cafasso, 1992). In
addition, female caregivers report a greater time

expenditure in contact hours (Horowitz, 1985; Stoller, 1983;

14
Young & Kahana, 1989), greater role conflict (George &
Gwyther, 1986; Young & Kahana, 1989), and greater caregiver
burden (Miller & Cafasso, 1992; Young & Kahana, 1989).

Male and female caregivers have different role
socialization backgrounds. Gender role socialization begun
in childhood and repeatedly reinforced by cultural norms
causes gender roles to become internalized and forms the
basis for stereotypical attributes of male and female
behavior (Morris, 1996). It can be argued that gender role
socialization results in female caregivers providing more
nurturant activities such as personal care. Likewise, with
their emphasis on relationships, it is not surprising that
women are more vulnerable to the effects of caregiver
stress.

Research has also supported a relationship between
gender role identification and decision making (Radecki &
Jaccard, 1996). Decision making is a special kind of
problem solving in which all the possible solutions are
known and the task is to identify the best available choice
using a predetermined set of criteria (Morris, 1996). High
levels of femininity have been correlated with greater
satisfaction with group decisions (McGraw & Bloomfield,
1987) and higher commitment to group decision making
(Kirchmeyer, 1996). Gender role socialization provides
rationale for why women, with their greater sensitivity to
other people's feelings and expectations, will place more

value on group decisions (McGraw & Bloomfield, 1987;

15
Orlofsky & Stake, 1981). In looking at the decision of care
facility selection, a study by Johnson (1990) found that the
basis for selection by daughter caregivers was in keeping
with the traditionally feminine attributes of empathy,
concern for others, and placing a premium on relationships.
Not surprisingly, the proximity of the facility to self or
family and friends, cleanliness and appearance of the
building and its' residents, and the recommendations from
others were considered the most important criteria.

Research has also linked gender and conformity (Eagly,
1987). Conformity refers to voluntarily yielding one's own
preferences to social norms (Morris, 1996). A meta-analysis
of conformity research performed by Eagly (1987) found a
slight overall tendency for females to be more easily
influenced than males. Perhaps this can be explained
because women are socialized to be more sensitive to the
dynamics of interaction and encouraged to be passive and
accepting.

The particular kinship relationship between the
caregiver and recipient exerts another significant influence
on caregiving. It is well documented that the experience of
the spousal caregiver differs from those of the child
caregiver (Barnes, Given, & Given, 1992; Fortinsky &
Dushuttle, 1990; Lieberman & Kramer, 1991; Montgomery &
Kosloski, 1994). Spousal caregivers provide a wider range
of assistance over a longer period of time with a daily time

commitment consistently more than their child counterpart

16
(Montgomery & Kosloski, 1994). Children are more likely to
seek help from others with caregiving (Fortinsky &
Dushuttle, 1990). As a group, they tend to experience
greater feelings of abandonment (Barnes, Given, & Given,
1992). With significantly more frequency than spousal
caregivers, child caregivers opt to institutionalize their
dependent elder (Lieberman & Kramer, 1991; Montgomery &
Kosloski, 1994).

Interestingly, Montgomery & Kosloski (1994) found that
while there is an inverse relationship between level of
affection for the care recipient and care facility placement
when the caregiver is a child, the level of affection does
not predict placement for elders cared for by their spouses.
In fact, despite being older and generally in poorer health,
spousal caregivers are the least likely to relinquish their
role (Montgomery & Kosloski, 1994) and report a greater
sense of responsibility (Barnes, Given, & Given, 1992). One
explanation for this is that spousal caregivers often view
care provision as a normative expectation of marriage in
contrast to a child whose role as caregiver to a parent
represents a major role change (Barnes, Given, & Given,
1992; Montgomery & Kosloski, 1994).

“The marital relationship is fundamentally different
from the parent-child relationship in terms of its history,
expectations, level of commitment, patterns of costs and
rewards, and duration” (Montgomery & Kosloski, 1994, p. 71).

Understandably, pulled by competing demands, child

17
caregivers as a whole experience more role conflict (George
8 Gwyther, 1986) with daughters reporting the greatest
burden and role strain (Young 8 Kahana, 1989).

Although not specific to the role of caregiving,
research has supported a difference in decision making
between cognitively impaired elderly and their adult
children. In a study by Townsend and Poulshock (1986),
widows were found to be less likely to delegate the primary
influence over decisions to anyone. Adult children in the
study named more professional and family sources as
participants in decisions regarding their elder relative's
care.

The above studies (Eagly, 1987; George 8 Gwyther, 1986;
Horowitz, 1985; Johnson, 1990; Kirchmeyer, 1996; McGraw 8
Bloomfield, 1987; Miller 8 Cafasso, 1992; Radecki 8 Jaccard,
1996; Stoller, 1983; Stone, Cafferata, 8 Sangl, 1987; Young
8 Kahana, 1989) suggest that caregiving may differ
substantially when gender and kinship relationship are
considered. According to gender role socialization theory,
wife and daughter caregivers will be similar to each other
and different from husband and son caregivers (Morris,
1996). However, a kinship perspective is important because
social interactions shape behaviors and take place within
the context of current roles (Aneshensel 8 Pearlin, 1987).

The caregiving literature provides ample evidence of the
differences inherent in being either a spouse or an adult

child caregiver. What is not known is how these

18

relationships affect caregivers' preference for attitudinal
or normative components in the selection of a care facility.
Given the differences in wife and daughter caregivers in
terms of competing demands and the nature of the
relationship itself, it would not be surprising to find
considerable differences between these two groups of
caregivers in the importance they place on attitudinal and
normative components. In this study, it is hypothesized
that wife and daughter caregivers will differ in the
importance they place on attitudinal and normative
components in the selection of a care facility.
W

The purpose of this study is to answer the question,
“Are there differences between wife and daughter caregivers
in the extent to which specific attitudinal and normative
components influence their selection of a care facility?”
W

The conceptual framework utilized in this study is Ajzen
and Fishbein's (1980) Theory of Reasoned Action. This
theory has been widely used to predict intention and
behavioral outcome-in a variety of behaviors such as breast
self-examination (Lierman, Young, Kasprzyk, 8 Benoliel,'
1990), physical therapists and nursing students decision to
work with geriatric clients (Dunkle 8 Hyde, 1995), and
medication compliance in patients with hypertension (Miller,

Wikoff, 8 Hiatt, 1992). This theory has not been used as

19
part of an examination of caregivers selection of a care
facility.

Ajzen and Fishbein's (1980) theory is based on the
assumption that people are rational beings and as such make
reasoned decisions about their behaviors. Behavior is a
product of attitudes and acceptance of norms, including
social pressures to perform or not perform the behavior
(Ajzen 8 Fishbein, 1980). If an understanding of care
facility selection by a caregiver is to be achieved, then
information on the importance caregivers place on
attitudinal and normative components is essential. The
theory (see Figure 1) assumes that an intention to perform a
behavior is the immediate determinant of behavior and that
all other factors that influence behavior are mediated
through intention (unbroken lines in Figure 1). The
strength of a person's intention is a function of two basic
components, a personal belief about the behavior and the
influence of the social environment or significant others.

Belief about the behavior is determined by an
individual's belief about the consequences of the considered
behavior and an evaluation of those consequences. As stated
earlier, an attitude is an organization of beliefs and
feelings that are acquired through learning and developed
through life experiences. Attitudes about a behavior are
the result of beliefs about the consequences of performing
that behavior. For example, a caregiver's attitude on

selection of a care facility (behavior) based on location

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21
(attitudinal component) may be the result of the caregiver's
belief that proximity to family and friends will impact
quantity of visitors (consequence) and the importance the
caregiver gives to that outcome (evaluation).

The influences of the social environment or significant
others is termed the subjective norm. Ajzen and Fishbein
(1980) describe subjective norm as the individual's
perceptions of what salient others believe about the value
of the behavior and the individual's motivation to comply
with those social influences. Thus, subjective norms are
the result of beliefs about the expectations of salient
others. An example of this would be, a caregiver's attitude
on selection of a care facility (behavior) based on the
recommendation of the physician (normative component) may be
the result of that caregiver's belief that the physician
expects the caregiver to choose the recommended facility and
the motivation the caregiver has to comply to that
expectation. “In the final analysis, then, a person's
behavior is explained by reference to his beliefs” (Ajzen 8
Fishbein, 1980, p. 79).

Ajzen and Fishbein maintain that external variables can
affect behavior only indirectly (broken lines in Figure 1).
The model's authors contend that external variables are
related to behavior only if they are related to one or more
of the variables that directly links beliefs to behavior.
Thus, external variables can increase understanding of the

behavior in question if they provide insight into the

22
factors that determine salient beliefs. The design of the
original study allowed for the identification of the
external variable of caregiver relationship and its
inclusion into an adapted model of the theory of reasoned
action (see Figure 2). Caregiver relationship can thus be
analyzed for its significance in influencing intentions and
behavior indirectly by its effect on attitudinal beliefs,
consequence evaluations, normative beliefs, motivation to
comply with others expectations, or on the relative weights
of the attitudinal and normative components (Ajzen 8
Fishbein, 1980).

For the purpose of this study, Ajzen and Fishbein's
model was adapted to allow for the delineation of the care
facility selection criteria under the appropriate headings
of the two basic components of attitudinal beliefs and
normative beliefs. Based on an analysis of the information
shared within five focus groups, averaging eight to ten
participants each, the researchers of the original study
arrived at twelve varied reasons for selection of a
particular care facility. Of these twelve, nine were
attitudinal beliefs involving facility characteristics and
three were normative beliefs involving the recommendation of
salient others. The instrument and content will be

described in the methodology section.

23

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24
Methods

Design

This analysis will be drawn from a larger project in
which the impact of Alzheimer's disease and related
dementias on family caregivers were studied. The original
study titled, "The Impact of Alzheimer's Disease on Family
Caregivers", was funded by the National Institute of Mental
Health, federal grant # NIMH 2 R0141766, and awarded to
Clare Collins, RN, PhD, FAAN, who served as Principal
Investigator. The College of Nursing and Center for Survey
Research at Michigan State University carried out the study
from 1989-1993. The design of the original study was a
longitudinal survey that utilized three measurement points
during a four year period. The issue of
institutionalization was not addressed until the second and
third measurement points since one of the enrollment
criteria for the study was that the patient and caregiver
were residing in the community at the time of entry. The
second measure was taken an average of 22 months after the
initial measure (SD=3 months), and the third measure
occurred an average of 15 months (SD=2 months) following the
second measure (Collins, Stommel, Wang, 8 Given, 1994).
Data for the present study was extracted from information
obtained from female caregivers who placed their relative
with dementia in a care facility during the course of the

original study.

25

mm

The project described in this report is a retrospective,
non-experimental, descriptive analysis of secondary data
obtained by telephone questionnaire. The design is
retrospective in that it focuses on an event that occurred
in the past. The design is non-experimental in that the
independent variable, relationship, is a human
characteristic not subject to manipulation. In addition,
the subject under investigation is not amenable to the other
experimental requirements of randomization or control.
Lastly, the study is descriptive in that the research is not
intended to reveal cause and effect relations between the
variables but rather is more concerned with describing how
one variable, relationship to the care recipient
(independent), is related to another, components in care

facility selection (dependent).

53mm
Q:iginal_§tudy. A convenience sample of family

caregivers was recruited through mailings to potential
participants located through the Alzheimer's Association,
the Michigan Association of Adult Day Care Centers, and
health agencies in southwest Michigan. Caregivers returned
a postcard to the Principal Investigator if they were
interested in taking part in the study. Trained
interviewers then screened potential participants to
determine eligibility for entry into the study.

Caregiver/patient dyads were eligible for enrollment if they

26
met the following criteria: 1) the caregiver was self-
identified as the family member providing the most care to
the relative with dementia; 2) the family member with
dementia was at least 55 years old; 3) the dementia
individual was dependent in at least one activity of daily
living (ADL) and one instrumental activity of daily living
(IADL); 4) by caregiver report, the family member had a
diagnosis of Alzheimer's disease or other progressive
dementia; 5) the person with dementia was residing in the
community at the time of entry into the study. Although it
is not given as an enrollment criteria, caregivers without
phones were excluded from the study by the nature of the~
data collection method. Participants who, after the onset
of the study, placed their relatives in a care facility
continued to be involved in the second and third waves of
the original study.

Ergaen;_§;ndy. Over the four year course of the
original study, approximately 26 percent of the sample
placed their relative in a care facility. For the present
analysis, the subjects were wife or daughter caregivers who
identified themselves at either the second or third
measurement point as having placed their relatives with
dementia (N=58) in a care facility. This was a
nonprobability sample due to the selection of subjects by

means of convenience and eligibility criteria.

27
E l : J] l' i I l I l'

After being informed of the purpose for the original
study, caregivers who agreed to participate signed an
Institutional Review Board approved consent form.
Participants were initially informed that each telephone
interview would take 60 to 90 minutes to complete and that
there would be a total of three interviews over the duration
of the study. In addition, caregivers were asked to
complete a mailed self-administered booklet. The Center for
Survey Research at Michigan State University carried out the
data collection activities for the second and third
measurement points. The Center utilized the Computer
Assisted Telephone Interviews (CATI) system to allow for on—
line data entry and coding of participant responses.

During the recruitment phase, one of the inclusion
criteria was that the patient with dementia be dependent in
at least one IADL and one ADL. ADLs include eating,
bathing, dressing, toileting, grooming, walking, and getting
in and out of bed. IADLs include cooking, transportation,
laundry, shopping, housework, and handling money. This was
measured by means of a self-report check list that the
caregiver completed. Information related to demographic
characteristics, such as gender and relationship, were
obtained during the telephone interview using standard
survey items. Participants who placed their relative in a
care facility after entry in the study were interviewed at

the next scheduled measurement point. Caregivers who placed

28
their relative in a care facility between the scheduled
measures were interviewed an average of twelve months after
the decision and placement occurred.

Validity is the degree to which an instrument measures
what it is intended to measure (Polit & Hungler, 1995). The
survey utilized was specifically designed for this study.
The instruments reliability and validity have not been
investigated. The face validity of the questionnaire was
supported by the use of focus groups. Without the use of‘
focus groups, the threat exists that closed-ended
questionnaire items will have too narrow a scope having been
generated solely from the perspective of the researcher
(Kingry, Tiedje, & Friedman, 1990).

Methodologists frequently cite variations in interviewer
behaviors as sources of error in survey research (Polit &
Hungler, 1996). Without adequate training and supervision,
interviewers will differ in ability to establish rapport
with respondents, correct use of probes, question
clarification, and editing and coding of answers (Woodward,
Chambers, & Smith, 1983). Also a threat is the tendency of
interviewers to inaccurately record data based on
preconceived notions about how participants will respond
(Spool, 1978).

To counteract the above sources of errors, the Principle
Investigator of the original study included the following
components in the interview training: information specific

to the research project, instruction on interviewing

29
techniques, question-by-question review of the study
instrument, and practice sessions with specific feedback.
Upon completion of intensive interviewer training, an
emphasis was placed on field supervision. In conjunction,
during the early phases of data collection, weekly
debriefing meetings with interviewers were conducted so that
problems could be discussed and resolved. Interviewer
training features and strategies that were employed in the
original study are described in Collins, Given, Given and
King (1988). As a final safeguard, all completed
questionnaires were reviewed for coding accuracy prior to
data entry.
: Ii 1 E E' °!' E M . I]

In this study, attitudinal components are facility
characteristics that the caregiver believes will have
certain consequences or outcomes and are operationalized
using nine items listed under question #18, identified as b-
d and g-m, in Wave 2, C2A of the survey instrument (see
Appendix A). Items listed included prior residency, site
visit impression, cost, availability, location, and quality
of care. Specifically, prior residency was addressed in
item b, site visit impression in item c, cost in item d,
availability in item 9, location in items h and j, and
quality of care in items I, k, and l.

Normative components are recommendations of the care
facility by salient others such as physicians, relatives or

friends and operationalized using three items listed under

30
question #18, identified as a, e, and f, in Wave 2, C2A of
the survey instrument (see Appendix A). Recommendation of
the facility by relatives or friends was addressed in item
a, by a physician in item e, and by hospital staff or other
health professionals in item f.

The answer selections related to the topic of care
facility selection were arrived at by means of focus groups.
Five focus groups, averaging 8 to 10 participants each, were
assembled to discuss the issues of community service and
institutionalization. The participants were recruited
through area support groups and were dementia caregivers at
various stages in their caregiving experience. Their care
recipients were a combination of individuals residing both
in the community and in care facilities. From the analysis
of the shared information, twelve varied reasons for
selection of a particular care center were included as
questionnaire items during the second and third measurement
periods.

After each of the twelve items were read, the respondent
was asked to answer yes or no depending on how the statement
applied to her. Two examples of proposed reasons were: “This
facility was the only one I could afford (or insurance would
accept)" and “This facility provides the best care." To
increase the probability that all possible reasons would be
identified, an additional question was asked as to other
factors (not mentioned) which influenced the caregiver's

decision. After identifying the factors that played a part

31
in their care facility selection, the caregiver was asked to
state which reasons MQSI influenced her choice. For each
caregiver, up to two reasons could have been identified as
the most influential (Appendix A).

Caregivers were read a statement about a particular
facility characteristic or recommendation. Answers to the
individual items were recorded as “YES” if the statement
applied to them and WHY if it did not. Item m was open and
allowed for the respondent to identify any other factors
which influenced their decision. Trained interviewers
recorded the responses utilizing the CATI system for on-line
data entry.

The relative importance of attitudinal beliefs and
normative beliefs are operationalized using question #19 in
Wave 2, C2A of the survey which asked the caregiver to state
which reasons MQSI influenced his/her choice. For each
caregiver, up to two reasons could be identified as the most
influential. Intention to select a particular care facility
is the immediate determinant of the behavior. The strength
of the caregiver's intention is a function of both a
personal attitude toward the behavior and the influence of
significant others. Question 19 of the survey assessed the
relative importance of attitudinal beliefs and normative
beliefs by asking which of the criteria most influenced the
caregiver's selection.

The type of relationship between caregiver and care

recipient is operationalized as the gender (female) of the

32

caregiver and the relationship of the caregiver to patient
(spouse or child) as indicated in the original study data.
WW

After the caregivers were informed of the purpose for
the study and agreed to participate, they signed an
Institutional Review Board approved consent form. At each
subsequent data collection point the surveyor obtained
verbal consent. The rights of all subjects involved in the
original study were protected in accordance with the
University Committee on Research Involving Human Subjects
(UCRIHS) at Michigan State University. Approval was
obtained from the Michigan State University Human Subjects
Review Committee prior to the initiation of any data
collection associated with the original study. The data
obtained during the original study was coded and stored on
computer diskettes. Confidentiality was assured by the
assigning of identification numbers to subjects. No data
was used which could identify individuals. Approval for the
use of the original data for this current study was obtained
from UCRIHS (Appendix B).

Results

This study involved the use of an established data set,
therefore the information had already been coded. The items
to be examined had been converted into numeric values to
allow for statistical analysis. The findings described in
this section are compiled from the responses of 58 female

caregivers of individuals with dementia. The sample

33
involved 35 spousal caregivers and 23 daughter caregivers.
For statistical analyses using chi-square tests of
independence, the Pearson chi-square statistic was used. In
addition, because of the small sample size, Fisher's exact
tests were done for those 2x2 tables in which expected
values were small (i.e., those cases in which greater than
20% of the cells had expected values of less than 5).
Tables showing sociodemographic characteristics of the
samples and tables giving the results of the data analysis
are included.
5 . i 1' :1 I . I'

Table 1 presents the sociodemographic characteristics of
the combined caregiver sample, the wife (n=35) and daughter
(n=23) group samples, and results of significance testing
(p=$0.05). This sample of female caregivers was
predominantly white (n=55 or 97%). Only two wives and one
daughter represented a different ethnic group, identifying
themselves as black. The majority of the caregivers were
spouses (60%) as opposed to daughters (40%). As expected,
the mean age of the wife caregivers (68.6 years) was higher
than that of the daughters (51 years). The two groups also
differed with respect to employment, with daughters more
likely to be employed (70%) than wives (17%). For those who
reported household income (n=55), the mean income of the
daughter caregiver group ($38,116) was significantly higher
(t=3.48, p=0.002) than that of the wives ($22,476). There

was no statistically significant association between

34

 

 

   
   
 

 

 

 

 

 

 

 

 

 

 

Table 1.
I‘uoq .6. . .. ‘ e .90 I- e. - . o. -
Samples
1. _- -6 “
Caregiver Combined Wife Daughter Significance
Characteristics Group Caregivers Caregivers Test for
n=58 n=35 n=23 Difference
(Chi-Sq or t-
test) ______

Caregiver Mean 61.6 68.6 50.9 t=7.48

age SD 11.8 6.6 10.0 p80.00

(Years)

Race White 56 34 22 2:50.93
Non- 2 1 1 p-O.76*
white

Employment SZ§£°Y°d 22 6 16 x2816.2
employed 36 29 7 p80 . 00

Education Less 5 4 1 x2=5 . 84
than HS 16 13 3 p80.05
HS 37 18 19
College
[Higher

Household Mean $29,016 $22,476 $38,116 t=3.48 pa0.00

Income

Duration Mean 4.47 Median of 3.0 u=315.5

of SD 4.37 Mode of 3.0 p-0.64

Caregiving

lézears)

 

 

 

 

 

 

 

*Due to inadequate cell size the Fisher's Exact Test was applied.

caregiver relationship and education, which was categorized

as “less than high school,” “high school,” and “college or

higher“ (p=0. 05) .

responded that they had “college or higher” education.

In both groups the majority of caregivers

For

the entire sample, the duration of caregiving years ranged

from one year to 30 years.

This data was available for 53

subjects, 30 of whom reported 1, 2, or 3 years of caring.

The average years of caring was more than four years (4.47

35
years). There was no significant difference between the
caregiver groups using the Mann-Whitney test (p=0.64).
E E E I i' .1 J I!

Frequency of response testing to determine significance
was conducted on individual items considered in the
selection of a care facility. Chi-square tests were done to
test for associations between caregiver status and an
affirmative response by the caregiver on individual items
considered in the selection of a care facility (Question
18a-l) in an attempt to ascertain the importance of
attitudinal and normative components in the selection of a
care facility for a relative with dementia. No
statistically significant associations were noted. Because
of inadequate cell size the Fisher's Exact Test was applied
to the interpretation of the probability for the individual
items of best care, cost, only one in area, prior residency,
and physician recommendation. Frequency of response on
individual items are presented in Table 2.

While daughters were significantly more likely than
wives to mention additional factors which influenced their
decision (Question 18m), subsequent analyses of the
individual additional factors mentioned indicated no
association with caregivers status.
MQsL_Infiln§ntial_QQmRQn§nI§

Caregivers were asked to identify which of the

components most influenced their choice of care setting

 

 

36

 

 

 

 

 

 

 

 

 

 

 

 

Table 2.
C 0
Individual Combined Wife Daughter Significance
Components for Group Caregivers Caregivers Test for
Consideration n258 n=35 n=23 Differences
(Chi-Sq or
____________ _ _____Fmr't“__t_- (-
I. Attitudinal E
Components
c) site visit 44 24 20 {-2.09
impression p80.15
I) best care 39 25 14 x2-2.7l E
p-O.l7* i
g) availability 29 20 9 x1-2.12
p-O.l4 i
i
h) closest 27 16 ll x2=0.01 .
location p-0.95
(k) special 26 17 9 x2-0.83 é
programs or units p80.36
(1) staff training 25 12 13 ngo,72 ;
p-O.39 ;
(d) cost 8 6 2 xZ-o.91 {
p-0.4S* !
(j) only one in 6 s 1 x2-1.56
area p80.38*
(b) prior 3 l 2 xz-o.9l
residency p-O.S6*
II. Mbrnative
Components
(a) relatives or 27 14 13 £81.30
friends p80.25
recommendation
(f) hospital staff 19 10 9 x280.58
or other health p=O.45

professional
recommendation

 

 

 

 

 

 

37

 

 

 

 

T ”W
Individual Combined Wife Daughter Significance
Components for Group Caregivers Caregivers Test for
Consideration n=58 n=35 n=23 Differences
(Chi-Sq or
Fisher's Exact)
I: as I
(e) physician 12 7 5 xZ-o. 01
recommendation p81.00*
(m) other 33 l9 l9 x2=4 . 4l
p-0.04*

 

 

 

 

 

 

 

(Question 19). Up to two responses were coded for each
caregiver. The frequency with which each factor was
identified is shown in Table 3. With the exception of
closest location and best care, because of inadequate cell
size the Fisher's Exact Test was applied to the
interpretation of the probability for the individual items.
Of all the factors considered, closeness of location was the
only one determined to be significantly different between
groups with daughter caregivers identifying this factor as
influential in their decision more frequently than wives.
Components

Components (Question 18a through 1) were then classified
as being either attitudinal or normative, as previously
discussed. Responses to Question 19 were reanalyzed using
this coding scheme. Twelve subjects gave a response which
was neither attitudinal nor normative, i.e., reported one of
the additional factors (Question 18m) as most important, or
did not answer. Five subjects gave two responses, one

attitudinal and one normative. 0f the remaining 41 ~

38

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Table 3.
v0 o ‘0 .- 011900‘0 ‘ 0 ‘ '00 |-_ 00 . ‘0. ‘
J m
Most Influential. Combine Wife Daughter Significance Test
Components d.Group Caregivers Caregivers for Differences
n=58 n=35 n=23 (Chi-Sq with or
without Fisher's
Exact Test
h) closest l7 7 10 1823.69
location p-0.05
I) best care 13 7 6 X2-0.30
p80.59
g) availability 8 4 4 x2-0.42
p80.70*
d) cost 6 3 3 x280.30
p80.67*
c) site visit 5 4 l x2=0.38
impression p=0.64*
a) relatives or S 3 2 x2-0.00
friends p=1.00*
recommendation
k) special 4 3 1 Kat-0.39
programs p-1.00*
e) physician 3 2 1 x2-0.05
recommendation p81.00*
f) hospital 2 2 o x2=1.36
staff or other p=0.51*
recommendation
b) prior 1 1 o x2=0.67
residency p81.00*
j) only one in 1 1 0 x¢-o,57
area p-1.00*
1) staff 0 0 0
‘ training

 

 

 

 

 

 

*Due to inadequate cell size the Fisher‘s Exact Test was applied.

39
subjects, a total of four gave normative responses and 37
gave attitudinal. There was no difference in this response
by caregiver group (Fisher's Exact Test, p=0.63).

The responses that identified other factors as most
important were then looked at and classified as being either
attitudinal or normative based on the previously discussed
definition. The additudinal components included clean/no
odor, friendly/caring staff, close to other relative's home,
familiar with facility/staff, and facility could provide
better care. The one normative component given was “had a
good reputation.” Because of inadequate cell size the
Fisher's Exact Test was applied to the interpretation of the
probability for these other factors. Types and frequency of
response of other factors is shown in Table 4.

The data was reanalyzed with the addition of these other
factors. In this analysis, 6 subjects did not give a
response to Question 19. Again, five subjects gave two
responses, one attitudinal and one normative. The remaining
forty-seven subjects gave a total of six normative responses
and forty-one attitudinal responses. As was the case prior
to the inclusion of the other factors data, there was no
difference in this response by caregiver group (Fisher's
Exact Test, p=0.38). The frequency of response of

attitudinal and normative components is shown in Table 5.

Table 4.

   
  

4O

 

 

 

   

     
   
   

 

 

  

 

  

 

  

 

  

 

  
   

 

 

 

# m
.7
Other Factors Combined Wife Daughter Chi-Square f
Group Caregivers Caregivers Significancei
n=58 n=35 n=23 Test with 9
Fisher's
6 s x2=O.19
p=0.74
friendly/caring staff 11 4 7 x223.26
' p=0.93
close to other 5 2 3 1330.95
relative's home p=0.38
familiar with 4 l 3 x2=2.24
facility/staff p-0.29
facility could 4 2 2 x2=o.09
provide better care p=1.00
II. normative
Component
"good reputation 8 4
=====u========

Table 5.

 

 

 

 

 

  

 

 

u
Wife Daughter
Caregivers Caregivers _____
Attitudinal 41 23 18
lNormative 6 5 1
gm

 

 

 

 

 

Significance:

  
   
 

Fisher's
Exact ' T
- 0° 3_wj

 

41
Discussion

The results of this study are limited by several
methodological flaws. The original study involved a
convenience sample of self selected caregivers who met
screening criteria. These caregivers were motivated to
participate in a longitudinal study. There is no way of
knowing the potential bias in this kind of sample. In
addition, the sample enrolled in the original study was
predominantly well-educated, middle class, and Caucasian.
The homogeneity of the sample subjects limits
generalizability of findings to caregivers with similar
characteristics. For the current study, the use of wife and
daughter caregivers drawn from the original study
participants resulted in a nonprobability sample which
limits the usefulness of study results. Given that the
sample is small and comprised exclusively of caregivers of
persons with dementia, severe limitations must be placed on
the generalizability of any analysis that is done.
Caregivers of individuals with dementia more than likely
comprise a distinct subgroup of the larger population of
family caregivers of the impaired elderly (Collins, 1993).
The sampling of a larger, more heterogeneous population may
have resulted in different findings.
I l l I' 'l l'

The questions regarding the twelve possible reasons for

care facility selection are an initial attempt at

42
understanding the complex issue of care facility selection
by caregivers. However, by posing the twelve possible
reasons for care facility selection with yes-or-no responses
for the caregiver to answer, limitations are placed on the
results. Decidedly, all people who responded to these items
probably did not have the same strength of feeling.
Caregivers who were ambivalent were forced to choose yes or
no and included with those who had stronger feelings. Thus,
the end result may suffer from a lack of precision because
of the restricted measurement comprising only two levels and
oversimplifying how people felt (Spector, 1992). However,
this may have been counterbalanced by the follow-up question
that asked the caregiver to list out the reasons that were
most influential.

As with all retrospective studies, there is the threat
that respondents may reconstruct their perceptions of the
decision in light of postadmission experience at the care
facility. Because the decision to institutionalize was made
at different times by different caregivers while the data
collection points were set, for some of the respondents the
recall was fresh while for others it was not. For those
individuals who experienced a lapse of several months
between the occurrence of facility placement and recalling
the decision, it is feasible that their memories may have
become distorted. When dealing with an elderly population

under stress, memory can be tenuous.

43
I l I l' E E' 3'

The study findings does not support previous research
that found children named more professional sources as
participants in decisions about their elders' care (Townsend
& Poulshock, 1986). Contrary to previous research that
reported a high commitment to group decision making by
female participants, (Kirchmeyer, 1996; McGraw & Bloomfield,
1987) there was no indication that this group of caregivers
places an emphasis on normative components. However, there
was consistency with the literature in regard to the high
percentage of spousal caregivers. With the traditional
feminine attribute of placing a premium on relationships it
is not surprising that location, with its implication on
proximity of the facility to self and family, is considered
the most important component in deciding on placement.
Location was also consistent with the majority of previous
research done on care facility selection (Bell, 1996;
Prawitz et al., 1994; Roff, 1983; Van Auken, 1992; York &
Calsyn, 1977). However, referring to Table 3, daughter
caregivers were more likely than wife caregivers to place an
emphasis on closest location. Given the sample size of
twenty-three daughter caregivers, ten of whom rated closest
location a major determinant in their selection process,
proportionately more daughter caregivers than wife
caregivers identified this factor as influential in their
decision. In this sample of caregivers, relationship

appears to influence the importance placed on the

44

attitudinal component of closeness of location. This result
may reflect the influence of competing roles and
responsibilities on daughter caregivers that would make
visiting a hardship if it involved a substantial expenditure
of time driving to and from the facility, not including time
to interact. For all three groups of caregivers: combined,
wives, and daughters, there was agreement on the three

components identified as most influential. Consistent with
a much earlier study done by York & Calsyn (1977), closest
location, best care, and availability were acknowledged with
the most frequency.

Continuing to refer to Table 3, the majority of
responses for both groups of caregivers are captured by the
three most cited components. Surprisingly, it appears that
very little influential consideration was given to any of
the other factors. A drop in the number of caregivers that
identified components beyond the first four seems to occur.
It is important to note that only four wives and one
daughter identified site visit impression as a major
consideration. For daughters, this result may again be a
reflection of the influence of competing roles and
responsibilities that may severely limit the time
expenditure they can devote to facility selection. Another
possible explanation for the lack of consideration given to
site visit impression by both wife and daughters caregivers
is that often care facility placement occurs during a crisis

or is precipitated by the hospitalization of the care

45
recipient. Under these circumstances, there is often
insufficient time to explore placement options and
availability becomes the determining factor.

Also of note is the lack of consideration given to
special programs. Only three wives and one daughter
identified special programs as a major influential component
despite the importance of special programs for individuals
with dementia. This lack of consideration seems to
contradict the high consideration that the caregivers gave
to best care. The rationale for this discrepancy is
unclear, but the caregivers in this sample don't appear to
place a premium on the same components that a health care
professional would use to evaluate quality. Perhaps because
of time constraints, the majority of caregivers in this
study were not given an opportunity to evaluate the care
facility selected and thus were unaware of any special
programs at the time of their selection. Another possible
explanation could be that the wife and daughter caregivers
have a different perception from a health professional on
what constitutes quality. Lastly, due to inexperience, they
may simple lack knowledge on how to evaluate care facility
quality.

Given that wife and daughter caregivers identified
availability as influential in their selection decision more
frequently than either site visit impression or special
programs, it may have been that the caregivers were limited

in their options at the time of the decision. If care

46
facility placement occurred during a crisis, there may not
have been time to explore placement options and availability
was the defining factor.

The Theory of Reasoned Action developed by Ajzen and
Fishbein (1980) has been used to predict behavior. The
theory is based on the assumption that people make reasoned
decisions about their behaviors. The theory assumes that
all factors that influence behavior are mediated through
intention. The strength of a person's intention is a
function of his/her belief about the behavior and the
influence of significant others. Using the Theory of
Reasoned Action, an attempt was made to analyze the
caregiver relationship for its significance in influencing
intentions and behavior indirectly by its effect on the
importance placed on attitudinal and normative components.
The findings of this study show that both wife and daughter
caregivers ranked attitudinal components as most
influential. This result may be attributed to the current
emphasis on informed consumerism. Whereas in years past a
physician's opinion was seldom questioned and the health
care consumer was a passive participant, the present
culture places great value on active consumerism and
partnering with your health care provider.

Further testing with more heterogeneous samples of
caregivers would increase the validity of the survey and the

generalizability of the results obtained.

47
u."... e ;._..-._-. '-( ".....-..-. .-

The implications of this study for the Advanced Practice
Nurse (APN) in primary care are several. Recognition and
understanding of the importance caregivers place on
attitudinal and normative components in the selection of a
care facility will guide the APN in developing successful
strategies for assisting caregivers that are the most
appropriate and acceptable to the caregiver. One of the
domains of nursing practice is the teaching-coaching
function. Using research as a beginning foundation, the APN
may anticipate caregiver response and utilize that skill to
support the caregiver's decision making process.

Caregivers may be limited by their perceived options.
As stated previously, if care facility placement occurred
during a crisis, there may not have been time to explore
different facilities. A percentage of individuals with
dementia are placed in a care facility directly following a
hospital admission (York & Calsyn, 1977). This is
significant given that shortened hospital stays frequently
limit the opportunities to examine alternative facilities
and to control the selection process. In these instances,
availability is often the determining factor. Under
conditions of uncertainty, usual decision making abilities
may be compromised. Such considerations as site visit
impression or special programs may not be influential in the
selection of an initial care facility because of time

constraints. This is unfortunate given that the choice made

48
will have profound implications for the individual being
placed and the caregiver making the selection. Previous
research has supported that satisfaction is greater for
families in agreement with the facility selected and who
investigated all choices in an area before deciding on one
(Prawitz, Lawrence, Draughn, & Wozinak, 1991). However, the
APN in primary care is in the ideal position to assist these
caregivers in making careful and personally compatible plans
for the long term care of their relatives with dementia.
The APN can enlighten families that their immediate
selection of a facility does not have to be permanent and
that an alternative placement can be secured at a later
date. In addition, the APN can provide education on what
constitutes quality and what to look for in evaluating a
care facility for future placement of their relative.

As an effective change agent, the APN, through the use
of research based nursing interventions, can facilitate an
environment for learning specific to certain populations and
provide information in keeping with what the caregiver views
as valuable. For example, this study found that wife and
daughter caregivers place more value on attitudinal
components. Therefore, it would make sense for the APN to
focus on facility characteristics when providing information
to this population of caregivers. Because the four most
influential components identified by both wife and daughter
caregivers were the attitudinal components of closest

location, best care, availability, and cost, any information

49
on proposed care facilities should at a minimum address
these four key issues.

The APN can assist the caregiver in identifying or
clarifying her feelings regarding specific attitudinal and
normative components so she can make a decision regarding
the selection of a care facility that is most appropriate.
For example, if it is known that location is of importance
to daughter caregivers because of the time constraints
placed on them by their competing roles and
responsibilities, the APN could provide comparative
information related to location and access (highway vs.
rural roads) of various facilities within a designated
geographic range. Likewise, if it is known that location is
important for wives because they must rely on public
transportation in order to visit their spouse, the APN could
work with area care facilities to develop a transportation
system that could accommodate family members who wish to
visit but are unable to drive. In this latter example, by
helping to remove the location barrier, caregivers would
perceive more placement options. Thus, the APN can provide
guidance and counsel while assuring that ultimately the
decision remains that of the caregiver.

Knowing that the selection of a care facility by the
caregiver is often based on limited information, an APN
positioned within a care facility would be better able to
respond to the special needs of this population. Because

the information the caregiver has received about the

SO
facility has a tendency to be superficial, the APN should be
prepared to offer an extensive orientation to get the
caregiver acquainted with the facility.

The literature review also provided general practice
implications for the APN that are not based on this specific
data. Caregivers often find that they are making placement
decisions under less than ideal conditions. Early on in the
caregiving process, the APN can offer reassurance and
anticipatory guidance. The APN can assist families in
planning in advance and, when possible, involve elders in
the planning. Involving elders while they are still able to
participate in decision making helps to minimize the guilt
that caregivers may experience with placement. The
importance of promoting futuristic planning among family
members and encouraging open communication about care
facility selection before a crisis happens cannot be
overstated.

In the role of assessor and case manager, the APN is in
a position to identify high risk individuals, both
caregivers facing burnout and care recipients facing future
institutionalization. The APN can provide reassurance and
anticipatory guidance regarding issues of role overload and
feelings of abandonment. In addition, the APN can serve as
coordinator, collaborator and patient advocate making
referrals as needed to other sources of support.

The APN may be involved on a community level by

providing education regarding measurable quality.

51
Caregivers may not know what to look for in the selection of
a care facility. The implications of licensure, staffing
ratios, and special programing may not be meaningful to the
caregiver without exposure to the concepts and education.
Educating caregivers and families concerning the
alternatives that they have in providing long term care for
their elderly relative with dementia is a void that the APN
can fill. One possible method of education would be the
creation of a brochure describing the various care
facilities in the area highlighting their different
features.

As an increasing proportion of the U.S. population lives
to very old age, the incidence of dementia is likely to
increase. A major role for the APN in primary care will be
to serve as an advocate for the optimal care of individuals
with dementia. The APN no doubt will have numerous
opportunities to apply these and future research findings in
their work as requests from caregivers for assistance with
decision making occurs with increasing frequency.
Wren

Results of this study create new opportunities for
future research. Additional research is necessary, not only
to corroborate the present findings, but to continue to fill
in gaps in our understanding of the components conSidered
important in care facility selection. Given that the sample
utilized was small, self-selected, and homogeneous, the

significance and generalizability of the findings is

52
limited. In replicating this study, several modifications
to strengthen the research can be done. A larger sample
with a more diverse population would give the effects of
randomness a chance to work and thus maximize the
possibility that study results are reflective of a more
general population. The inclusion of multi-ethnic groups
would allow for exploration of cultural characteristics
which may affect care facility selection.

Administering the survey during the actual placement
process would provide more recent recollections of
perceptions involved in the decision and less threat of a
maturation effect (Polit & Hungler, 1995). It is feasible
that components important during the selection process may
differ from their perceived importance after the selection
has occurred. As a result of subsequent visits to the care
facility, respondents may alter their idea of what is
important or the value placed on an attitudinal or normative
component. For example, location may not seem initially
important but after daily visits to a care facility thirty
miles away, especially in winter, location may take on
greater significance for the caregiver.

Although the survey provided an overview of the
importance placed on particular attitudinal and normative
components involved in care facility selection, the addition
of the other factors identified in this study would make the
tool more inclusive. Another suggestion would be to better

differentiate the individual components of quality by

53
listing out such factors as staff to resident ratio and
staffing mix.

In addition, a revision of the tool could provide better
discrimination of feelings. Substituting a likert scale in
place of the yes-or-no response would allow for strength of
response differentiation. Caregivers who were ambivalent or
had weak feelings as to the importance of a particular
attitudinal or normative component would be differentiated
from respondents who had stronger feelings. Another option
would be to have caregivers rank order the specific
attitudinal and normative components so that in addition to
frequency, an order of importance could be assigned.

The survey tool did not allow for different evaluations
of the same outcome. For example, location was cited as the
most influential component for selecting a care facility by
both wife and daughter caregivers. However, the rationale
for why location is so important may be different between
groups. As stated earlier, location may be important for
wives because they must rely on public transportation in
order to visit their spouses. Location may be important to
daughters because, given their competing roles and
responsibilities, it will influence frequency of their
visits. The importance of knowing the rationale is that
behavioral change is ultimately the result of changes in
beliefs. In order for the APN to plan successful
interventions, it is essential that the rationale behind the

belief is known. The implication is that in order to

54
influence behavior, people have to be exposed to information
which will produce changes in their beliefs.

An additional suggestion would be the development of
survey questions to more accurately reflect attitude toward
the selection of a care facility and subjective norms.
Attitude toward selecting a care facility based on location
could be obtained by summing the responses to a number of
semantic differential evaluative scales. For example,
foolish-wise or bad-good could be response options to the
question “Choosing a care facility for my relative with
dementia based on location is ___,” Normative components
could be defined by including each of specific normative
beliefs. For example, “My physician thinks I should select a
particular care facility in order for my relative to receive
the best care? could have the response options of definitely
should-definitely should not (Giles & Cairns, 1995; Timkko,
1987).

While this study looked at caregiver demographics, it
did not include information on the care recipient.
Particularly useful would be information on functional
impairment. Further research that explores whether the
degree of functional impairment of the care recipient
influences the importance caregivers place on attitudinal or
normative components could prove worthwhile. Anecdotal
accounts of caregivers who agreed to care facility placement
for their markedly dependent relative, only upon the

insistence of their family physician, provides rationale for

55
additional study. Would increased functional impairment of
the care recipient result in the caregiver placing increased
importance on the normative component? This is a question
and a possibility that should be explored.

Additional insight could be gained by investigating
caregiver perceptions of the events preceding care facility
placement and the subsequent satisfaction with the care
setting. Examining various aspects of the decision making
process is important because the way decisions are made is
likely to have an impact on post decision well-being. Prior
researCh has shown an association between the degree of
caregiver involvement in facility selection and sustained
satisfaction with the facility. Likewise, caregivers could
be surveyed as to their perceptions of barriers to their
decision making process and for suggestions of clinical
strategies that could have provided them with needed
assistance. Also of merit would be the study of outcomes
specifically geared to the particular effects of APN
educational interventions as they relate to assisting
caregivers in care facility selection. Although females
make up the majority of caregivers, a significant number of
males also carry out this role. Therefore, a final
recommendation would be to study male caregivers for the
importance of attitudinal and normative components in their

selection of a care facility.

 

56
Summary
This study of wife and daughter caregivers of
individuals with dementia examined the importance of
attitudinal and normative components in the selection of a
care facility. The Advanced Practice Nurse in Primary Care
may use the Theory of Reasoned Action to better understand
how the selection of a care facility is a function of the
caregiver's belief about the behavior and the influence of
significant others. The result of this study indicated that
both wife and daughter caregivers ranked attitudinal
components as most influential. Therefore, the implications
for the APN is to focus on facility characteristics when
providing information to this population of caregivers.
Consistent with the majority of previous research done on
care facility selection, location was frequently cited as an
important component in deciding on placement. However, the
importance of closeness of location was determined to be
different between groups with daughter caregivers ranking
this factor significantly most influential. Knowing the
marked importance daughter caregivers place on closeness of
location, the APN would be most supportive providing
comparative information related to location and access of
varying facilities within a designated geographic area.
Given the small sample size and generalizability of the
findings is limited. To corroborate the present findings,
additional research and a revision of the tool are

recommended.

 

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' - ' ' . Newbury Park: Sage.

Spool, M. (1978). Training programs for observers of

behavior: A review. Rorsonol_25¥9holgg¥1_ll, 853-888.

Stoller, E. P. (1983L Parental caregiving by adult

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851-858.

Stone, R., Cafferata, G., 8 Sangl, J. (1987).
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Stone, B. I., 8 Kemper, P. (1989). Spouses and children
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Timko, C. (1987). Seeking medical care for a breast
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62

Townsend, A.L., 8 Poulshock, S.W. (1986).
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U. S. Department of Health and Human Services, Public
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. Washington, DC: Department of
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Wilson, H. S. (1989). Family Caregiving For A Relative
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Woodward, C., Chambers, L., 8 Smith, K. (1983). Guide

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strain. Wm) . 660-666.

APPENDIX A

Institutionalized Survey

63

18. lie are interested in how the care facility that your 1 ti is in mu was m.
l'e going to read you a list of state-ants. Please Insular f the stat-ant nplies
to you and no if--it does not. ‘

 

IITERVIEHER: These minus refer to pres-it facility in idiich
patient resides.

 

 

 

 

a. Relatives or friends M the __ YES (1) __ no (2)

' facility. - 21

b. My relative has been in this facility _ YES (1) __ l0 (2)
before. '8

c. I visited facility and fouid it, _ VI (1) _ no (2)
acceptable. ' K

d. This facility vas the only one 1 _YES (1) _I0 (2)
could afford (or insurance would ' U
accept).

e. iiy physician race-ended the _ YES (1) __ l0 (2)
facility. '8

1’. Hospital staff or other health __ YES (1) _ I0 (2)
professionals reed-ended the '5
facility.

9. This facility had the first opening. _ YES (1) _ l0 (2) E

h. This facility was closer to ey hone. _ YES (1) __ I0 (2) 51'

i. This facility provides the best care. _ YES (1) __ no (2) 3'2

1. This facility was the only one in ey _ YES (1) __ I0 (2)

- area. '5

k. This facility had special progras or __ YES (1) __ no (2)
units for the care of Alzheieer's/ ‘51
duentia patients.

1. This facility did not have a special _ YES (1) _ l0 (2)
unit but the staff had special 3'!
training in care of Alzheilu'sl
deemtia patients.

I. here there.any other factors idiich ___YES (1) _IO (2)
influenced your decision to place 5‘
your relative in this facility rather
than another facility? (Describe)

373’
SE
19. which of the above reasons £51 influenced your choice of this care setting?

(List out reasons)

. .1!”

 

an

APPENDIX B

UCRIHS Approval Letter

 

 

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64

MICHIGAN STATE

UNIVERSITY

November 11, 1997

TO: Clare Collins
A-129 Life Sciences

RE: IRE“: 97-721 -

TITLE: THE IMPORTANCE OF ATTITUDINAL AND NORMATIVE
COMPONENTS IN THE SELECTION OF A CARE FACILITY
BY WIFE AND DAUGHTER CAREGIVERS OF PERSONS WITH
DEMENTIA

REVISION REQUESTED: N/A

CATEGORY: l-E .

APPROVAL DATE: 10/30/97

The University Committee on Research Involving Human Subjects'(UCRIHs)
reView of this progect is complete.. I am pleased to adVise that the
rights and welfare of the human subjects appear to be adequately
rotected and methods to obtain informed consent are appropriate.
herefore, the UCRIHS approved this project and any reVisions listed
above.

RENEWAL: UCRIHS approval is valid for one calendar year, beginning with
the approval date shown above. Investigators planning to
continue a proyect be one year must use the green renewal
form (enclosed with t e original a proval letter or when a
project is renewed) to seek te certification. There is a
maximum of four such expedite renewals ssible. Investigators
wishing to continue a project beyond the time need to submit it
again or complete reView.

REVISIONS: UCRIHS must review any changes in rocedures involving human
subjects, rior to initiation of e change. If this is done at
the time o renewal, please use the green renewal form. To
revise an approved protocol at an 0 her time during the year,
send your written request to the_ CRIHS Chair, requesting revised
approval and referenc1ng the progect's IRB # and title. Include
in your request a description of the.change and any revised
instruments, consent forms or advertisements that are applicable.

PROBLZKS/
CHANGES: Should.either of the following arise during the course of the
' work, investigators must noti DCRIHS promptly: (1) roblems
(unexpected side effects, comp aints, etc.) involving uman
subjects or $2).changes in the research environment or new
information indicating greater risk to the human sub'ects than
existed when the protocol was preViously reviewed an approved.

If

we can be of any future help, lease do not hesitate to contact us
at (517)355-2180 or FAX ($17)4 2-

171.

Sincerely,

  
   
 

avid E. Wright.
UCRIHS Chair

E":bed

Ph.D.

cc: Melanie Low

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