a. igfiwmfi.

gift... 13!,
In“.

 

2...: mm
, .cwuex._..u.m,#.xmamn1a
i s 3.:
..L... a»? F

m...

..- .5. ,1

.7 < :l‘. rt;

.ufizu. ..d. .. r
,

‘YIJ .p"?
a Izlillvlfi
I. .. . .
Euuug
35......
$33...

1:1.
. .1 2.»: ._ 1: ..
JHAQI-OIKD.

.. 1..-}...

.2...»!nu.... nun. .c
:3...
vrvti’lh}

.11! .-
'5? 5| 1

, l.

3“: .I‘li‘t

\t~|0.1 EVA I (VI).
. I .H 1’... . n

. . . . .. , , ..;:riwaéa

. :31... 1.:

 

'I'Hc'SI-‘I

‘ IIIIIIIIIIIIIIIIIHIIIIHIJ”III”HIIIIHIIIIIHI

31293 01405 6380

This is to certify that the
thesis entitled

USEFULNESS OF HOME HEALTH AIDE SERVICES AS PERCEIVED
BY WIFE AND DAUGHTER CAREGIVERS 0F RELATIVES WITH

DEMENTIA
presented by
BARBARA J . HOLTROP
has been accepted towards fulfillment '
of the requirements for
MASTER OF SCIENEE . NURSING

degree 1n

 

 

SHARON KING, .N., Ph.D

 

Major professor
Date—WM

0-7639 MS U is an Affirmative Action/Equal Opportunity Institution

 

 

LIBRARY

Michigan State
Unlverelty

 

 

 

PLACE IN RETURN BOX to remove thle checkout Irom your record.
TO AVOID FINES return on or before date due.

DATE DUE DATE DUE DATE DUE

 

  

 

 

 

 

 

 

 

 

—l[:__l_7
6:]:
::l__-
—_ll——li

MSU Ie An Affirmative Action/Emu Opportunity lnetltulon

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

USEFULNESS OF HOME HEALTH AIDE SERVICES AS
PERCEIVED BY WIFE AND DAUGHTER CAREGIVERS
OF RELATIVES WITH DEMENTIA
By

Barbara J. Holtrop

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
1996

ABSTRACT
USEFULNESS OF HOME HEALTH AIDE SERVICES AS
PERCEIVED BY WIFE AND DAUGHTER CAREGIVERS
OF RELATIVES WITH DEMENTIA
BY

Barbara J. Holtrop

This study examined and compared the perception of the
usefulness of home health aide services between wife and daughter
caregivers of dementia patients using the services. It was a secondary
analysis of data from the study of family caregivers of dementia
patients conducted by the College of Nursing, Michigan State
University, Clare Collins, R. N., Ph.D., Principal Investigator. The
sample included 24 wives and 19 daughters and focused on responses
to questions regarding importance and satisfaction with home health
aide services. Unexpectedly, bivariate analysis found no significant
differences between wives and daughters on either usefulness indicator.
There was little variation in responses. Wife and daughter users
perceived services to be both important to them and were highly
satisfied. Implications of the findings for research and practice are

presented.

To mother, whose whole life has been a model of caregiving.

iii

ACKNOWLEDGMENTS

This paper would not have been possible without the help and
encouragement of my professors, colleagues, and family. The
information and advice from Clare Collins, principal investigator for
the original study was much appreciated. The hours spent by
Manfred Stommel and Diane Krasnewich helping me run data for
analysis were not only helpful, but a good learning experience. The
assistance of Betty Marshall in obtaining literature was also
appreciated.

A special "thank you" to Sharon King, who dealt so graciously
with my many questions and phone calls over the past year. Her
guidance, prompt feedback, and calm reassurance helped so much,
especially her "I'll tell you when to worry!"

Without the loving support from my family, this project would
never have been completed. Their many hours spent doing those
household tasks that should have been mine, their encouragement and
advice, their help with final proofing and printing, and their prayers
helped "carry me through" the preparation of this paper that was the

culmination of the requirements for this degree.

iv

TABLE OF CONTENTS

LIST OF TABLES ...................................................................... vii
LIST OF FIGURES .................................................................... viii
THE PROBLEM ........................................................................ 1
Background of the Problem ............................................. 1
Statement of the Problem ............................................... 4
REVIEW OF LITERATURE ....................................................... 4
Conceptual Definitions and Review of
Empirical Evidence .................................................... 4
Type of Relationship: Wives and Daughters ............ 5
Perceived Usefulness of Home Health Aide
Service .......................................................... 8
Conceptual and Methodological Problems ....................... ll
Conceptual Framework ................................................... 13
Aday and Andersen Expanded Behavioral Model ..... 14
Adaptation of Aday and Andersen Model to This
Study ................................................................. 16
Present Study Relative to Literature Review .................... 18
Relevance of This Study .................................................. 19
METHODS ............................................................................... 21
Sample Selection ............................................................ 21
Field and Data Collection Procedures ............................... 22
Protection of Human Subjects .......................................... 23
Operational Definiton of Variables .................................... 23
Instrumentation and Scoring ........................................... 24
Research Design and Analysis .......................................... 25
RESULTS ................................................................................. 27
Sample and Background Material ..................................... 27
Overall Sample Characteristics ................................ 27
Comparison of Characteristics of Wife and
Daughter Samples ............................................... 28
Preliminary Evaluation of Usefulness and
Possible Confounders ................................................... 31
Correlation between indicators of usefulness ........... 31

Correlation of Usefulness Indicators with

Possible Confounders .......................................... 32

Comparison of Usefulness Between Wives and
Daughters .................................................................... 32
DISCUSSION ............................................................................ 34

Interpretation Relative to Framework and

Literature .................................................................... 34
Limitations and Methodological Problems ........................ 36
Implications .................................................................... 40
Recommendations for Future Research ................... 4O
Implications for Nursing Practice ........................... 41
APPENDICES ............................................................................ 44
Appendix A: Health Service Utilization Questionaire ........ 44
Appendix B: UCRIHS Approval ........................................ 45
LIST OF REFERENCES ............................................................. 46

vi

LIST OF TABLES

Table 1 — Demographic Variables for Wives and Daughters ............. 29

Table 2 - Analysis of Dependent Variables ...................................... 33

V11

LIST OF FIGURES

Figure 1 - Association Between Relationship Type and Caregiver
Perception of Usefulness of Service ......................... 17

VIII

The Problem

Background of the Problem

A major problem facing those who make health care decisions
in America, due the growing number of elderly citizens, is how best
to help the large number of dementia patients and their family
caregivers. One of the "most debilitating of illnesses (of old age) is
Alzheimer's Disease (AD), which affects memory, cognition, and
behavior" (Ganzer & England, 1994 p.175). AD, the leading cause of
dementia, is a progressive degenerative disease leading to severe
mental and physical incapacitation and death. The prevalence of
severe dementia increases with age, "from less than 1 percent of the
population under the age of 65 to 25 percent of those over the age
of 85" (U. S. Congress, Office of Technology Assessment, 1990, p.
11). It is estimated that the number of severe dementia patients.
those who need someone to care for them continually, is
approximately 1.8 million, and that there are up to five million more
with mild or moderate dementia (U. S. Congress, OTA, 1990).

Families assume primary responsibility for the care of their
members who are chronically ill or disabled. (Montgomery, Gonyea.
& Hooyman, 1985). Estimates of numbers of all caregivers range

from 2.2 million (Stone, Cafferata, 8: Sangl, 1987) to 7 million

I\)

(Fletcher & Winslow, 1991), over 70 % of whom are women. with
one third over the age of 65 (Stone et al., 1987).

While many female caregivers are wives, it is now a normative
experience for daughters to be the caregiver to an elderly parent,
with the caregiving period spanning "several of the caregiver’s age
periods or stages" (Brody, 1985, p 22). Caregiving encompasses a
wide variety of tasks (Clark & Rakowski, 1983; Montgomery et al.,
1985), which for many wives and daughters leads to physical and
mental strain or "burden" (Cantor, 1983; Lieberman 8r Fisher, 1985;
Montgomery et al., 1985; and Sheehan & Nuttall, 1988).

For caregivers of progressive dementia patients, the effects are
especially far-reaching, since the course of the disease "varies from
two to twenty years and there is no cure" (Ganzer & England, 1994,
p. 174). The tasks of caring for and supervising a dementia patient
increase as the disease progresses, and can become so unrelenting
that many overwhelmed caregivers place the dementia patient in
long term care facilities (Collins, King, 8: Kokinakis, 1994; US.
Congress, OTA, 1987; 1990).

There are wide variations in the self-care deficits and cognitive
and behavioral problems associated with dementia, depending on the
type and stage of progression of the disease, so a variety of services
may be needed by dementia patients and caregivers over the course
of the disease (Fortinsky & Hathaway, 1990; U. S. Congress, OTA,

1990). A home health aide who can give a portion of the physical

care, help with household tasks, or aid in supervision of the relative
could provide some relief to the dementia caregiver.

In spite of these possible benefits, actual use of services of any
kind by family caregivers of dementia patients is low and occurs quite
late in the caregiving process (Caserta, Lund, Wright, & Redbum,
1987; Stone et al., 1987; U. S. Congress, OTA, 1990). The reasons
for this are complex and not fully understood. Some areas that have
been previously studied and appear to provide some explanation are
"related to the health and behavioral status of the patient, the
services available in the community, and the knowledge and appraisals
of the caregiver" (Collins, King, Given, & Given, 1994, p. 327). Collins.
King, 81 Given, et al., (1994) urge further study of which services
caregivers regard as helpful. It may be that caregivers do not perceive
the services to be useful enough to truly benefit them.

The Advanced Practice Nurse (APN) who cares for the
dementia patient is frequently in a position to counsel both patients
and their caregivers, most of whom are wives or daughters. While it
is the patient who initially receives the "care", as the disease
progresses, the caregiver increasingly needs advice and support from
the APN. The APN needs to understand caregivers' perceptions of
the usefulness of services, such as a home health aide, so she /he can
work with the caregiver to plan strategies that will help the caregiver
better cope with the stress of caring for a relative with dementia. How

helpful, and thus how important, do wife and daughter caregivers

4

consider home health aid services? How satisfied are they with such
services? Is there a difference in perception between wives and
daughters? If the APN understood these caregiver perceptions
better, he /she would then be better equipped to counsel wife or
daughter caregivers regarding service options. This would also help
in development of care plans, including plans for referrals for the
individual dementia patients and caregivers that the APN serves.
Statement of the Problem

The purpose of this study was to investigate whether the
perceptions of the usefulness of home health aide services differ
between wife and daughter caregivers of dementia patients who were
using those services. The specific question asked in this study was:
Among current users of home health aide services for assistance in
care of dementia patients, is there a difference between wife and
daughter caregivers in their perception of the usefulness of the
services?

Review of Literature

Conceptual Definitions and Review of Empirical Evidence

In recent years a vast amount of research has been done that
describes and seeks to find relationships among various aspects of
caregiving for dementia patients. The focus of this review will be on
what is known about a specific type of relationship to the dementia
caregiver, that of wife or daughter caregiver, and whether there have

been differences noted in these caregivers' perception of the usefulness

of the home health aide services they use. Specific aspects of the
perception of usefulness examined will be that of the importance of the
above service in helping them with the care of their family member and
their satisfaction with the service.

Type of relationship: Wives and daughters.

A person's kinship bond, or family relationship type, such as
wife to husband or daughter to mother or father, may lead to
differences in one‘s perception of many experiences in life. The
experience of caregiving that leads to the caregiver's perception of
the usefulness of a service may also differ for wives and for daughters.
Both gender and relationship have been shown to impact a person's
responses to caregiving (Toseland & Rossiter 1989). Most
caregivers are female, but studies that compare wives to daughters
as caregivers are rare. Spouses and adult children are frequently
compared, instead of separating out wives and daughters, blurring
the effects of gender and relationship.

Two researchers who did specifically examine wives versus
daughters, reported that different patient symptoms or behaviors led
to differences in the amount or type of strain experienced by wives
or daughters (Harper & Lund, 1990; Quayhagen & Quayhagen, 1988).
They did not, however, examine perceptions of wives and daughters
regarding the usefulness of services. Some factors that make the
experience of caregiving different for wives compared to daughters

are discussed below. These may contribute to differences in how

6

each perceives the usefulness of a service.

The extent of the impact of caregiving has been shown to be
associated with the closeness of the kinship bond: the spouse
closest, then the adult child (Cantor, 1983). Due to the marital
bond, spouses have different "feelings of affection and obligation
toward one another than do adult children for parents" (Zarit &
Toseland 1989 p. 482; see also Montgomery, Kosloski, & Borgatta,
1990; Toseland & Rossiter, 1989). The spouse's caregiving is often
"done out of love and personal committment (and spouses)
expressed more of a sense of positive reaction" (Given, King, Collins, &
Given, 1988, p. 286) than did children. .

When a daughter serves as a caregiver to her parent. her filial
relationship brings with it several differences that can possibly be
perceived as problems for her. She takes on new roles, which bring
with it relationship changes. There is a "shift in intimacy" (Green,
1991, p. 7) resulting from the increase in involvement in the
parent's daily life, with tasks like feeding or personal hygiene.
Coupled with this, is the "shift in dependency" (Green, 1991, p. 8)
that results when the daughter takes on positions of power and
leadership that formerly belonged to the parent, thus "parenting
(her) own parent" (p. 8).

A wife has generally been involved in the day to day "care" of
her husband and home for many years. So although she now adds

additional caregiving tasks for her husband with dementia, there may

not be as great a change in the role for her as for the daughter caregiver
(Brody, Johnsen, Fulcomer, & Lang 1983). The daughter is usually in
midlife, the "woman in the middle" (Brody, 1981, p. 471) and may find
the experience filled with competing demands from husband, children
under 18, and employment, in addition to the demands of caregiving
for her parent (Bowers & Liegel, 1990; Brody, 1985).

Wife caregivers not only have "fewer defined roles to perform"
(Given, Collins, & Given, 1988, p. 72), but tend to be more isolated
than the daughter. This is due to "role regression and role
entrenchment" (Johnson and Catalano, 1983, p. 617), by which
wives give up social and family roles and focus on the caregiving
role. The wife is also more likely to prefer not to have a "stranger" in
the house (Caserta, et al., 1987; U. S. Congress, OTA, 1990). This
may be a privacy issue that could be more important to a wife than a
daughter. She may also prefer to continue giving "exclusive care"
(Collins, King, Given, et al., 1994, p.321) for a longer period of time
than a daughter.

These factors, which make the experience of caregiving
different for wives from that of daughters led to the hypothesis that
daughter caregivers would report that they found the home health
aide services they used to be more useful than wife caregivers. The
assumption here is that perceptions of usefulness formed during use
of the service may have parallels to that of seeking out and starting the

service. Therefore, the factors described above that have been

8

associated with possible effects on use may also influence perception of
usefulness. The independent variable in this study was the relationship
type (wife or daughter) of the primary caregiver to the dementia patient
who reported using the home health aide service during the three
months prior to data collection.

Perceived usefulness of home health aide service.

To be useful is defined as "to be able to produce good results,
or be used for some practical or beneficial purpose" (Ehrlich,
Flexner, Carruth, & Hawkins, 1980, p. 764). In other words, is it of
practical worth, really helping with a need? Is it beneficial and of good
quality or value? In this study, usefulness, the dependent variable.
was measured in terms of the perceived importance of and
satisfaction with use of the home health aide services. This was
based on the assumption that to be useful, something should be of
importance and, having led to good results, produce a satisfied user.

Importance is "having or able to have a great effect or
influence on something" (Ehrlich et al., 1980, p. 329). Thus, if a
service is perceived by the caregiver to have importance, it is seen to
be something that has a great effect, or is helpful or of value to them
in the caregiving situation. In this study, importance was linked with
the idea of value and helpfulness, when the specific question was asked
of the caregiver: "How important is this service in helping you care for
your relative?"

Satisfaction means to give someone "what he wants or demands

9

or needs, to make pleased or contented... to consider that this is
enough" (Ehrlich et a1, 1980, p. 601). Inherent in the idea of
satisfaction is one's perception of whether or not the service met
one's expectations or needs. Did the quality of the home health aid
service make one pleased, was it good enough? That is the sense in
which satisfaction was defined for this study, when the caregiver was
asked: "Overall, how satisfied are you with the service?".

Use of various services has been studied frequently, but
usefulness infrequently. No studies could be found which evaluated
the usefulness of home health aide services for wife and daughter
caregivers.

A home health aide is someone who is paid to provide in-home
health related services, supervision, or companionship. The person is
usually not a nurse and is not necessarily hired through an agency.
Examples of care provided are: bathing, dressing, feeding, exercising.
household chores, shopping, socializing, and supervising (U. S.
Congress, OTA, 1990). A home health aide may also be identified as
an adult companion or "sitter", but for the purpose of this study the
service provider will be referred to as a home health aide.

There is little in the literature regarding the use of home
health aide services, specifically. Collins, Stommel, Given, 8: King
(1991) reported that although over one third of a sample of 93

caregivers of dementia patients used home health aide services, the

10

frequency of use varied widely. Although use of home health aides
was evaluated in an attempt to predict use patterns by Bass 8:
Noelker (1987 ), these researchers did not address perceptions of
the caregivers related to the usefulness of the service.

Something of the possible usefulness of home health aide
services can be gleaned from studies that list which services
caregivers reported to be important to them, although no indication
is given of whether comparisons were made between wife and
daughter caregivers. Family caregivers report services that give
temporary relief from caregiving responsibilities to be the most
important to them (Caserta et al., 1987; Collins, King, Given, et al.,
1994; U. S. Congress, OTA, 1990). There is also an indication that the
importance of a service may also depend on the patient's stage of
dementia. Fortinsky & Hathaway (1990), reported that family
caregivers stated that their most important needs when AD was first
diagnosed, were for information and support, but as the patient became
more dependent, direct support, such as in-home care and practical
information on behavior management were most important. As
reported to Wilson (1989) in a qualitative study, most useful at that
stage was help in "changing pants and cleaning the floor" (p.97).
Attending to the daily care and supervision to protect the patient from
injury are important caregiver activities, and have been found to be
confining and burdensome (Montgomery, Gonyea, & Hooyman, 1985),

so it might be assumed that the use of a home health aid would be

11

considered useful by the caregiver.

Whether the service brings good results is also a part of its
usefulness, and relates to the quality of the service and user
satisfaction with the service. No studies regarding satisfaction with
use of home health aide service were found in the literature. However,
Liken & King (1995) discussed barriers to their use, which seems to
indicate a lack of satisfaction on the part of some who had used
services. Concerns expressed by users were the high financial and
psychological costs involved with arranging for the care, then finding
the service often "did not meet with their expectations" (p.63), lack of
knowledge about dementia care by the aide, and incongruence between
the cargiver's needs and the amount and type of help received. The
perception of non-importance or disatisfaction with a service is cited
as a barrier to the use or continuation of a service (U. S. Congress,
OTA, 1990). Other problems related to the quality of services that
reportedly have led some caregivers to complain about and sometimes
quit a service are: Poorly trained or late workers, inflexibility of
scheduling the care, lack of continuity, and theft (U. S. congress, OTA,
1990). Such problems could be expected to affect one's satisfaction
with use of the service, thus it's perceived usefulness.

Conceptual and Methodological Problems

Numerous caregiver and patient characteristics have been

studied to find out their effects on caregivers and predictors of

caregivers' use of services. Some characteristics that have been

12

shown to explain a portion of the effects on caregivers and their use
of services are: caregiver employment, co-residence with the care
recipient, care recipient and caregiver gender, severity of patient
behaviors or dependencies, particularly such intimate problems as
incontinence ( Caserta, et al., 1987 ; George & Gwyther, 1986; Harper
& Lund, 1990; Lieberman & Fisher, 1995; Montgomery et al., 1990). It
is not known, however, whether these may affect either the wife or
daughter caregiver's perception of the usefulness of the service.

Studies of service use and knowledge are often plagued by two
shortcomings: They tend to treat caregivers as a homogeneous group.
regardless of patient and caregiver characteristics (Cantor, 1983; Harper
81 Lund, 1990; Wolinsky 8: Arnold, 1988), or they lump service use into
one generic category whether the services are elderly meal sites,
physician or nurse visits, case management services, a variety of home
health care or respite services, or group educational and support
interventions (Caserta, et al., 1987; Collins, Stommel, Given, 8: King,
1991; Kushman & Freeman, 1986; see also reviews by Krout, 1983; and
McCaslin, 1988; Wolinsky & Arnold, 1988). As a result, findings
concerning which factors contribute to service use are often
inconsistent.

In addition, some intervention studies are made up of a
combination of different interventions and services, not just one
intervention (Green & Monahan, 1989; Haley, 1989; Lawton, Brody,

& Sapperstein, 1989; Mohide, et al.,1990; & Montgomery 8:

13

Borgatta, 1989) and there are often differences in study methods, so
it is difficult to compare them with one another (Collins, Stommel,
Given, & King, 1991). It is also difficult to know just which of the
interventions or services made the differences found in the study. It
would be expected that the type of service used may make a
difference in the caregiver's perception of the usefulness of the
service.

The above problems make it hard to evaluate services or
interventions across studies to make valid comparisons. Also, few
studies evaluate the quality of specific services or interventions to
support family caregivers of dementia patients and obtain judgments
from the perspective of the caregiver. (Collins, Given, 8: Given,
1994). Perhaps what is needed in future studies are those that
compare smaller homogeneous groups of caregivers, such as wives
versus daughters, that also use less "all- inclusive" categories of
services or interventions.

Conceptual Framework

Since there are multiple factors that affect a person's use and
perception of the usefulness of health care services, a comprehensive
conceptual model to guide policy makers, service providers, and
researchers is important. One of the earliest models was Andersen's
1968 "Behavioral Model for Health Services Utilization" (Aday 8r
Shortell, 1988, p.53), which was based on systems theory and

attempts to show the relationship between the factors affecting

14

service use. It also has a component that relates to the consumer
satisfaction with the service. The model was expanded by Aday &
Andersen (1974) and modified further by others, such as Bass 8:
Noelker (1987), who included caregivers, as well as added in-home
nursing and aide services to the medical services which had been
originally part of the framework. Andersen's model, some
modification of it, or portions of it continue to be used by
researchers as they examine various aspects of service use. A portion
of the 1974 version of the model was adapted for use in this study to
examine the perceived usefulness of the home health aide service
used by wife and daughter caregivers to the dementia patient.

Adav and Andersen expanded behavioral model.

The Aday & Andersen model (Aday & Andersen, 1974)
presents a framework from which to view the interactions among the
variables affecting service use. It begins with the health mlicy
component (financing and organization), which sets the scene for
the types of programs and services that will be available to the
consumers. The framework shows that policy has direct effects on
two other components, characteristics of the health delivery system
and characteristics of the population at risk.

Characteristics of the health delivery system include availability
of health care resources and the organization of those resources. The
health care system has a direct effect on three other components:

a) Characteristics of the population at risk, b) utilization of health

15

services, and c) consumer satisfaction.

The characteristics of the population are subdivided into three
groups of characteristics: a) Predisposing, b) enabling, and c) need.
These characteristics have direct effects on both utilization of health
services and consumer satisfaction. Both predisposing ("propensity...
to use services" p. 213) and enabling characteristics ("means ...to use
services" p. 213) are further divided into those that are mutable and
immutable. Predisposing characteristics are such items as beliefs,
knowledge, attitudes, age, sex, race, education, and employment
status. Enabling characteristics are such things as income and
residence. Need characteristics relate to level of illness.

In evaluating the population at risk, the unit of analysis is the
individual who may need the service. The characteristics of the
delivery system and of the population at risk are considered to be
process indicators.

The utilization of health services can be evaluated relative to
type of service, site, purpose, and time (contact or volume of use).
Utilization is shown in the framework to have a direct effect on
consumer satisfaction.

Consumer satisfaction refers to the attitudes or subjective
perceptions of the user toward the service used regarding the quality
of care received. Satisfaction or lack of satisfaction can have a direct
effect on future service utilization, and thus is used as a predictor of

service use. Consumer satisfaction and utilization of services are also

16

both considered to be outcome indicators by the authors (Aday &
Andersen, 1974).

Adaptation of Aday and Andersen Model to this study.

The focus of this study was to describe and contrast the
perception of usefulness that wife or daughter primary caregivers of
dementia patients reported regarding their use of home health aide
services. Therefore, the following modifications were made in the
framework: a) The consumer was the caregiver rather than the
patient; b) The predisposing characteristic studied was the
relationship type of the caregiver to patient (wife or daughter);

c) The consumer satisfaction component was relabeled "Caregiver
Perception of Usefulness"; d) Perceived importance of the service
was added to the perceived satisfaction to depict more completely
the "perceived usefulness" concept (see figure 1).

The analysis of the usefulness of the service addresses the
question of whether the type of relationship of the caregiver to the
patient (wife or daughter) makes a difference in perceived usefulnes
of the service. The hypothesis was that the daughters would
perceive the service to be more useful.

All caregivers in the selected study sample were using services.
so predictors of service use was not a focus of this study. The
predisposing characteristic (wife or daughter relationship) was the
focus and the selected caregiver socio-demographic and background

characteristics that described the sample reflect predisposing and

17

 

 

 

PREDISPOSING CHARACTERISTICS

CAREGIVER
RELATIONSHIP TYPE:

WIFE

OR

DAUGHTER

 

 

 

 

 

 

 

 

Ir

CAREGIVER PERCEPTION
OF USEFULNESS OF SERVICE

 

 

 

a.) IMPORTANCE
b.) SATISFACTION

 

 

 

 

 

 

FIGURE In Association between Relationship Type and Caregiver Perception of Usefulness
of Service. Adapted from Aday & Andersen, 1974, WWI).
p. 212.

18

enabling characteristics. These were treated as descriptive in this
study, however some were further analyzed to identify possible
confounding influences.

Present StudLRelative to Literature Review

The purpose of this study was to describe and contrast the
usefulness of home health aide service as perceived by wife and
daughter caregivers of dementia patients currently using the service.
Levels of importance and satisfaction were used to measure the
usefulness of the service and analyzed.

From the above review of the literature, other characteristics
were found that needed to be described and evaluated as possible
confounding variables or rival hypotheses. For example, such variables
as employment or a higher number of the patient's ADL dependencies
may increase one's perception of the usefulness of the service; or co-
residence, a fixed income, or the long standing patterns of an older
caregiver may decrease the perception of its usefulness. Therefore, the
sample was described and compared in terms of selected
sociodemographic characteristics for each group, such as: Age, income,
education, employment status, caregiver health, co-residence with the
care recipient, length of time giving care, and relationship of the
patient to the caregiver (e.g. mother, father, husband). Additional
background data that could confound the perceived usefulness of the
service, such as the amount of use (frequency and duration) and

patient dependencies were also described and compared.

19

To promote homogeneity in the sample, it was limited to
caregivers of dementia patients, thus using care recipients with the
same type of disease process. Use of wife and daughter caregivers
addressed the issue of the type of relationship to the recipient and
avoided gender bias since the caregivers were all female. This also adds
to our understanding of these subgroups of caregivers, since few studies
have compared wives and daughters.

Home health aide services are considered important to the care
of the dementia patient, according to the literature, but they have
been infrequently studied separately from other services, such as
support groups or respite services. This study was limited to an
evaluation relative to the use of these services. Caregivers were only
included in the study if they reported using the services within the
three months prior to the interview, to avoid the effect of remote
memory.

Relevance of This Studv

Government agencies, home health service providers, nurses,
caregivers, and patients all have an interest in the quality and
helpfulness of services. It is important for all, especially for those
receiving the service, that the service really be of help or benefit to the
one it is meant to serve. Too often the voice of the recipient of the
service is hidden or ignored. A service useful to one person may not be
of use to another. The APN often functions as a link between patients.

caregivers, service providers, and planners at the government level. How

20

these caregivers perceive this most common of services to the dementia
patient needs to be communicated to service providers and government
planners. Does the wife or daughter relationship of the caregiver to
the dementia patient make a difference to the perception of the
caregiver regarding the usefulness of home health aide services? This
information, although only a "piece of the puzzle" can be added to that
from other sources and used in planning for improved quality and
helpfulness of services. It can also be used by home health agencies in
planning marketing strategy geared towards wife and daughter
caregivers.

The most relevant aspect for the APN's own practice, is the
usefulness of understanding the wife - daughter perceptions as the APN
develops the care plan for the dementia patient and caregiver and as I
she / he counsels the patient and caregiver. Most of the caregivers the
APN will see will be wives or daughters. They will be seeking advice
from the APN, who will be assessing their needs and working with them
in mutual goal setting and planning for care from a variety of service
options. Understanding what, if any, differences there are between wife
and daughter perceptions of the usefulness of a service can be helpful
both in making planning decisions, and in strategies for the APN to use
in encouraging a needy but reluctant caregiver to take advantage of a
service that may be helpful to her, based on what others experiences
have been shown to be. The APN may also provide information relating

to service use that increases caregiver awareness that use of the service

21

is "normal" and expected, not a sign that the caregiver is deficient in
performing the role. Results of this study can also be used as a basis
for further exploration of caregiver attitudes and values in qualitative
studies of caregiver perceptions, particularly regarding the "Why" of the
caregiver perceptions.
Methods

This study represents a secondary analysis of data from the
second wave of a three-wave longitudinal study of family caregivers of
relatives with dementia residing in the community (Collins,
Stommel, King, Given, 1991 ). The study was supported by Grant #2
R01-MH-41766, "The impact of Alzheimer's Disease on Family
Caregivers", funded by the US. Department of Health and Human
Services, National Institutes of Mental Health. Principal Investigator
was Clare Collins, RN, PhD. The study was conducted at the College
of Nursing at Michigan State University from 1989 - 1993. The
grant objective that relates specifically to this study was to describe
dementia patient family caregivers' patterns of community service use,
including needs for and barriers to use (Collins, 1994, Executive
summary).
Sample Selection

The target population for the original study was family
caregivers of dementia patients residing in the community. The 210
subjects (Collins, personal communication by phone, January 16.

1996) were a convenience sample of family caregivers "located

N
IO

through mailings distributed by local chapters of the Alzheimer's
Association, the Michigan Association of Adult Day Care Centers, and
health agencies in southwest Michigan" (Collins, Stommel, & King, et
al., 1991, p. 757). A cover letter that explained the study was included
with the mailings. 350 subjects mailed back a post card to be
considered for enrollment in the study.

To qualify to be a part of the study, the following criteria were
met: The patient was at least 55 years of age, dependent in at least
one instrumental activity of daily living (IADL) and one activity of daily
living (ADL), diagnosed with Alzheimer's Disease (AD) or other
progressive dementia, and residing in the community. The caregiver
was the family member providing the most care to the dementia
patient.

Criteria for inclusion as sample subjects for this secondary
analysis were that the participant must be the self-acknowledged
wife or daughter primary caregiver of a dementia patient who had
used the services of a home health aide within the three months
prior to the survey.

Field and Data Collection Procedures

The method of collecting information used in this analysis was
an extensive 90 minute telephone interview, using the "Health
Service Utilization" questionaire (See Appendix A). Trained staff was
used for telephone interviews as described in Collins, Given, Given.

& King (1988). Information was gathered on four types of services,

23

home health aides, adult day care, skilled nursing services, and

family support groups. Further information needed for the initial study
was gathered by use of a mailed, self- administered booklet. Data
gathered in this analysis was from the second data collection point of
this study.

Subjects in the original study were asked whether they had
ever used any of the services for their relative, if they had used the
service in the past three months, and how long and how many times
they used the service. Study participants were also asked a number of
other questions about their use. Specific questions that were the
focus of this secondary analysis relate only to the use of home health
aide services.

Protection of Human Subjects

Explanation of the voluntary nature of the study, its
confidentiality, and study procedures was given to the study
participants and signed informed consent was obtained prior to data
collection. Prior approval for the original study was obtained from the
University Committee on Research Involving Human Subjects
(UCRIHS) at Michigan State University. Additional permission for
secondary data analysis of the identified sample was received by this
researcher prior to data analysis (See Appendix B).

Operational Definition of Variables
The dependent variable studied in this secondary analysis was

the perception of the usefulness of the home health aide currently

24

used. The variable was operationalized by the questions: "How
important is this service in helping you care for your relative?" and
"Overall, how satisfied are you with the service?" (Michigan State
University, 1990). The independent variable was the type of
relationship of the caregiver to the patient (wife or daughter).
Instrumentation and Scoring

The "Health Service Utilization questionaire" (Michigan State
University, 1990) contains a number of one item measures. It is a
structured instrument.

Pre-testing of the instrument was not done with caregivers for
reliability. However it was pre-tested for clarity, adequacy, and
freedom from bias among the researchers and their staff and later
among the interviewers. This led to several revisions in the
questions used. One problem with clarity, that of confusion on the
part of caregivers about the difference between home health aides
and companions in a prior study, led to the use of the combined
grouping for this service (M. Stommel, personal communication by
phone, Nov 29, 1995). To improve inter-rater reliability of the study,
the interviewers were extensively trained and supervised in the use
of the instrument (Collins, Given, Given, & King, 1988).

The level of measurement of the questions regarding
satisfaction and importance of the services are ordinal measures with
graded alternatives as responses. However, consistent with current

practice, they were treated as interval measures in this study, since

25

"the distortion introduced by treating them as interval measures is
too small to warrant an abandonment of powerful statistical analysis"
(Polit & Hungler, 1991, p. 398). The "How important" question has
three alternatives, and the "how satisfied" question has four
alternatives. The numerical responses of the subjects were scored
and the mean and standard deviation for each of the two sample
groups were summarized for comparison.
Research Design and Analysis

The original study upon which this analysis was based was a
non-experimental survey panel study. This study was a secondary
analysis of the data as follows.

Descriptive statistics were used to analyze and compare
selected caregiver characteristics of the wife and daughter
subsamples to look for any systematic differences between the two
groups, based on the reports in the literature. The number and
percent were given for categorical data and non- categorical
characteristics were summarized using mean and standard deviation
(SD). T-test or Chi-square tests of significance were utilized as
indicated in order to establish whether wives and daughters differed, on
average, with respect to background characteristics that may also have
been potential confounders.

Prior to the comparison of wives and daughters with respect to
their responses to the two questions about their perception of

usefulness of the home health aide, the responses for importance and

26

satisfaction were correlated using the Pearson Product Moment
Correlation procedure. The purpose was to determine if responses

to these two questions indicated similar or distinct dimensions of
usefulness. A correlation of 0.6 or greater was considered to be
necessary to justify combining the two indicators into a single index
of usefulness.

In a final preliminary step, scores on the usefulness variable
were correlated with the potential confounder variables. Only if a
background variable correlated _b_oth with the usefulness variable and
with the relationship variable (wives or daughters) would it be
considered a confounder to the question studied.

Finally, mean differences between wives and daughters on the
usefulness scores were explored by means of a two-tailed t-test for
independent samples as well as by a Chi-square test. The alpha level
used for all significance tests used was p = .05. The unit of analysis
was the individual caregiver. Data were analyzed using the SPSS
statistical program.

The primary goal of this analysis was to obtain a better
understanding of whether the wife or daughter relationship between
caregiver and patient made a difference in the caregivers'
perception of usefulness of home health aide services. This study did
not attempt to show causality nor to predict length or intensity of

service use.

27

Results

Sample and Background Material

Overall sanpile characteristics.

 

The primary caregivers in this sample (n=43) were the wives
(n=24) and daughters (n=19) of dementia patients residing in the
community who had used the services of a home health aide within
the three months prior to the survey. They were a subset of the 121
wife (n=84) and daughter (n=36) caregivers who responded to the
survey. Thus, 28.6 percent of wives and 52.8 percent of daughters
used the services in the prior 3 months. It appears that the daughter
caregivers in this study were nearly twice as likely as wives to make
use of the service! The caregivers in the study sample (n=43) were,
on average, 60.8 years old ranging in age from 39 to 83 years. Mean
household income was $33,081, with a range from $9,000 to
$65,000. Most (81%, n=35) had incomes $17,000 and above. This
sample was highly educated, since a majority (79%, n=34) had
graduated from high school. Eighty-six percent (n=37) of the caregivers
lived with the patient and 37 percent (n=16) were employed. The mean
length of time of caregiving was 4.7 years (range: 6 months to 12 years),
with a mean of 1.9 years (range: < 1 month to 9 years) for duration of
use of home health aide services. Mean number of times that the aide
service was used during the period was 42.4 (SD 36.1, range:l - 132).
An interesting fact noted in this sample, which is quite different from

those others who have been reported in the literature, is the high

28

number of times the service was used by these caregivers. Only 6 of the
43 caregivers used the services less than 1 time per week, 15 used
services 3 times per week, but less than 4 times per week, 7 caregivers
used the services 4-5 times per week, and 11 used the services, on
average, at least 1 time per day. Figures relative to skewness of the
sample in this regard are not remarkable ( .603). In contrast to this,
the skewness for importance rating and satisfaction with the service for
the sample as a whole was 2.5 for Importance (mean 1.1, SD .324) and
1.7 for Satisfaction (mean 1.4, SD .667).

Comparison of characteristics of wife and daughter samples.

Table 1 presents the sociodemographic and background
characteristics of the wife and daughter caregivers who indicated use
of home health aides within three months. T-tests for differences in
group means (Table 1) showed that the wife and daughter groups
differed significantly in respect to age (p=.000), education (p=.010),
and income (p=.023). Chi-square tests for differences in group
proportions (Table 1) revealed significant differences between groups
in living arrangements (p=.003), employment status (p=.006), and
patient sex (p=.000). As is also shown in Table l, the 24 wives cared
for husbands, 17 of the daughters were caregivers to their mothers,
and only two cared for their fathers. Not unexpectedly, daughters
were younger (mean age 51.3 years versus 68.2 years ) and had more

education (mean 14.7 years versus 11.8 years) and higher income

29

Table 1. Demographic Variables for Wives and Daughters

 

 

 

Characteristic Wives Daughters Sig Level“
(n=24) (n=19)

Age (yrs) .000‘2
Mean 68.2 51.3
SD 8.2 7.3

Education (yrs) .010C
Mean 1 1.8 14.7
SD 3.9 3.0

Income .023C
Mean $2 7313 $40368
SD $12209 $21014

Caregiver healtha .908C
Mean 1.9 1.8
SD 0.8 0.8

Patient Dependencyb .106C
Mean 3.1 2.6
SD 1.0 1.1

Duration of care (yrs.) .199C
Mean 5.3 4.0
SD 3.4 2.8

Months service used .629c
Mean 2.0 1.7
SD 2.3 1.2

Times service used .1610
Mean 35.2 51.0
SD 33.5 38.1

Living arrangement .003d
Lives with 100% (24) 68% (13)
Does not live with 32% (6)

Employment .006d
Full Time 8% (2) 42% (8)
Part Time 8% (2) 21% (4)
Not Employed 83% (20) 37% (37)

Pt. relationship to caregiver .000d
Husband 100% (24)
Father 11% (2)
Mother 90% (17)

 

( table continues)

Table 1. (cont'd.)

Note. Values for all t-tests except income were figured as equal
variences based on Levene's test.

a self-rating of health compared to age peers (Range: 1 = excellent to
4 = poor).

‘3 average of ADL dependencies in : bathing, dressing, toileting,
eating, grooming, walking (1 = Independent, 2 = supervision only,
3 = some physical health, 4 = total help).

C t-test results. ‘1 Chi-square test results.
‘p <.05

($40,368 versus $27313) than wives. Daughters (63%) were more likely
to be employed than wives (16%) and 32 % of daughters resided in
separate households. There was not a significant difference between
groups with respect to self-rated caregiver health, duration of care,
duration of use of home health aide service, the number of times the
service was used, or patient ADL dependencies. Although patients of
wives and daughters did not differ greatly in their dependencies overall,
they had a high percentage of dependencies of a more intimate nature.
such as bathing (total help n=28 or 65%), dressing (total help n=21 or
49%), and toileting (total help n=21 or 49%), indicating a fairly high
need for home health aide services.

In summary, the wife and daughter samples are composed mainly
of middle-class, middle-aged daughters and elderly wives with at least a
high school education, who have been taking care of their relative for 4-
5 years. The majority live with the patient and consider their health to
be good compared with others their age. Most wives are unemployed

and most of the daughters are employed. Groups seem to be alike with

31

respect to variables such as duration of care, patient dependencies,
caregiver health, and the duration and number of times that the service
was used. Characteristics that showed a significant difference between
wife and daughter groups and could possibly be confounders in
evaluation of the study question were: age, income, education, living
arrangement, employment status, and relationship to the patient
(husband, father, or mother). These were evaluated further by means of
correlation procedures and will be discussed later.

Preliminary Evaluation of Usefulness and Possible Confounders

Correlation between indicators of usefulness.

A correlation was computed for the entire sample (n=43) between
the two questions regarding importance of the service and caregiver
satisfaction, both of which were considered indicators of overall
usefulness of the service. Correlation was found to be very low and non-
significant: r=.08, p=.58. This finding seems to indicate that the
questions represent distinct aspects of usefulness, thus the two
questions were retained for separate analysis. However, as the data in
Table 2 show, there is little variation in the responses to these two
questions, so it would not be unexpected to find little or no linear
correlation.

The response pattern shows a bunching of the responses in the
first 2 options for each question, with 88.4 % (n=38) stating that the
service was very important in helping them care for their relative and

62.8 % (n=27) stating that they were very satisfied with the service.

32

Crosstabulation shows that 25 of the respondents (58%) were both very
satisfied and rated the service to be very important, while 11
respondents (26%) were both satisfied and rated the service to be very
important.

Correlation of usefulness indicators with possible confounders.

As a final preliminary evaluation, the responses to the questions
on Importance and Satisfaction with the service were correlated with
variables that had previously been shown to differ significantly between
wife and daughter caregiver groups. These variables were: age,
education, income, living arrangement, employment status, patient sex
and relationship of caregiver to the patient (husband, father, mother).
None of these showed a significant relationship to either importance or
satisfaction, so they will not be considered as confounders in the
evaluation of the hypothesis.
Comparison of Usefulness Between Wives and Daggers

When wives and daughters were compared on the question of the
importance of the home health aide service in helping them care for
their relative, 92% (n=22) of the wives and 84% (n=16) of the daughters
stated that the service was very important and the rest stated it was
somewhat important (see Table 2). There was not a significant
difference between the groups by either a Chi-square or t- test for
significance (Again, the lack of variation in responses is a major reason

for this).

33

Table 2. Analysis of Dep_endent Variables

 

Chi-Square evaluation for differences in group proportions

 

Variable ME Daughter P_h_i Significance
96; _n 22 1.1

Importance .12 .45 NS
Very (1) 92 22 84 16
Somewhat (2) 8 2 16 3

Satisfaction .31 .25 NS
Very (l) 54 13 74 14
Satisfied (2) 42 10 2 1 4
Dissat. (3) 4 1 0
Very dissat.(4) 0 5 I

 

Indemndent T-test evaluation for differences in group means

 

 

 

 

Wife Daughter Egual variences
Mean S__ S__ Mean SD SE t-value 2-tailsig
Importance 1.1 .28 .06 1.2 .38 .09 -.74 .46NS
Satisfaction 1.5 .59 .12 1.4 .76 .21 .64 .53 NS

 

 

34

Comparison on the question of satisfaction with the services
showed that 54% (n=13) of the wives and 74% (n=14) of the
daughters were very satisfied. One wife (4%) was dissatisfied and
one daughter (5%) was very dissatisfied. The rest of the wives and
daughters were satisfied with the service. This difference was
likewise not significant by either a Chi-square or t-test. Two-tailed
t-tests were used for both comparisons, and equal variance estimates
were used, based on results of Levene's test. The Chi-square results
are displayed in Table 2 along with the t-test results to show how the
pattern of the responses are bunched into the first 2 responses.

Both of these major findings were unexpected. It was
hypothesized that the daughters would find the services to be more
important than the wives and that they would be more satisfied with
the service. No differences between the two groups were found.

Discussion
Interpretation Relative to FrameworkLand Literature

The framework used for this analysis was an adaptation of the
Aday and Andersen expanded behavioral model (1974). It was
expected that daughters would perceive home health aide services to
be more important than wives and would be more satisfied with the
service. This hypothesis was not supported by the results of this
study.

The Aday and Andersen model was primarily designed to study

use, not usefulness, of services. Since the focus of this study was the

3S

wife-daughter relationship and its possible relationship to caregiver
perception of usefulness, only a portion of this comprehensive model
was adapted for use in this study. One must be aware that other
service use factors not evaluated as part of the study could have
affected the perception of usefulness and obscured some difference
between the wife and daughter relationship.

Wife and daughter caregivers had not previously been
compared relative to the usefulness of the services of home health
aides. Also the home health aide services have not been studied
separately from other interventions and services in this way,
particularly regarding whether the service was actually considered to
be useful. Even though the two groups of caregivers were not shown
to differ in this perception, the service was found to be considered
useful by both groups of caregivers. The information gained from this
study can be added to the large body of research already completed
regarding caregivers of dementia patients.

Other researchers had noted various differences in the impact
of caregiving on wives and daughters (Cantor, 1983; Harper & Lund,
1990; Montgomery, Gonyea, & Hooyman, 1985; Quayhagen 8:
Quayhagen, 1988). Due to differences in competing demands and
the number of roles that a daughter might have (Brody, 1981; Johnson
81 Catalano, 1983), it was expected that the wife and daughter groups
might vary in their perception of usefulness of the service. In view of the

large number (63%) of the daughters that were employed, that nearly

 

36

l/ 3 lived in separate households, and that the older wife was expected
to be less likely to want a stranger in her home, it was surprising that
there was no significant difference noted between wife and daughter
groups in either usefulness indicator. These are some of the variables
that are noted in the literature as possible influences on use, and but it
appears that while they may indeed have some influence on wife and
daughter caregiver use of home health aide service, they do not
influence their perception of usefulness of the service. Factors that lead
to begining a service and those leading to a sense of the importance of
or satisfaction with a service are not necessarily the same. It may be
that there truly is no difference between wives and daughters in

respect to perceived usefulness of the service of home health aides

for their relative with dementia, but it could also be that some
methodological problem may account for the findings.

Limitations and Methodological Problems
An important limitation of this study is that the sample was a

 

convenience sample, not random, and the caregivers were self-selected.
This limits the generalizability of the study.

This sample appears to vary from the "norm" reported in the
literature in several ways: The length of service use; high number of
times the service was used; and high level of education of subjects are
notable. Although these differences were non-significant, it appears
from the figures regarding duration of caregiving and length of service

use, that wives provide care longer before bringing in help and use

37

services less often on average than daughters. It may be that there are
other fundamental differences that were not revealed because they were
not a focus of this study.

Another limitation of this study that could possibly explain the
lack of any significant difference between the groups was the
selection of only the wife and daughter caregivers who had used the
service within the three months prior to the interview. This time
frame was chosen to obtain current perceptions on the part of
caregivers. Non-users were not included in this study sample, since
it was the perception of usefulness of those who were actually using
the service that was the focus of the study. This limited the study to
43 participants and probably accounts for the small variation in
responses of the participants.

Although others have found that caregivers often continue
services even when they are are faced with many "hassels" that could
lead to disatisfaction (Liken & King, 1995), it is possible that some
disatisfied caregivers quit the service, leaving primarily satisfied
caregivers. This could explain why 100% of the participants felt the
service was either very important or somewhat important in helping
them care for their relative and 95 % were either very satisfied or
satisfied with the service. If the group had been expanded to include
persons who had formerly used the services as well as current users
more variation in responses may have been found and may have led to

discovery of differences between wife and daughter caregivers on the

38
study question.

This lack of variation, skewed responses to the main
dependent variable, and small sample size may also account for the
low and nonsignificant correlation between the two indicators of
usefulness ( importance and satisfaction) and a similar finding when
possible confounding variables were evaluated by correlation with these
indicators of the usefulness variable. However, due to these factors,
both t-tests and Chi-square tests were done on the main variables to
test for significance.

The study instrument consisted of one-item measures and was
not intended to be scales. in using these two questions as indicators of
usefulness, they were treated as scales in this study, although as
distinct aspects of usefulness, since there was no linear correlation
found between them. Reliability of the instrument was not tested by
doing repeated measures with caregivers themselves, or using
techniques such as diaries. However, the questions were short,
clearly worded, and a clear definition of what was meant by the
service was given prior to asking about it, so the questions should
have been easily understood by the respondent. This made it
possible to consistently obtain from caregivers a measurement of the
degree of satisfaction and importance of home health aide service as
perceived by the wife and daughter caregivers. Since there were only
three or four graded alternatives, the instrument was relatively easy

to use for the 90 minute telephone interviews (C. Collins, personal

39

communication by phone, April 6, 1993).

However, responses from the questions from this instrument
may be more complex to evaluate for several reasons. is the
caregiver responding to the importance and satisfaction question
based only on the most recent experience with their home health aide
or is the response influenced by the overall experience with possibly
several aides? Is the satisfaction with the service truly as complete as
caregivers indicate, or is the response tempered by the fact that people
often rationalize their decisions based on a variety of need factors?

Other factors that may increase the complexity of evaluating
issues of usefulness of the service are: _How might the appraisal of
usefulness be complicated by the potential for the daughter to be
caring for a parent who still has a spouse living in the home? What is
the service like? Is the caregiver only using a home health aide, or
are there other services included as part of a service package.

The indicator of need used in this study was an average of
several ADL dependencies of the patient, however, behavioral aspects of
need and congnitive defecits were not used. Use of these may have
shown a significant difference.

These are some of the issues that may make the evaluation of
home health aide services much more complex. While it is important to
take homogeneous subsamples for evaluation, as was done in this
study, it is also important to view the caregiver against the backdrop of

the total picture.

4O
Implications

Recommendations for future research.

This study is an investigation of only a small "piece of the
puzzle" in the overall picture of what might be useful to caregivers of
dementia patients to help them care for their relative. No difference
was found in the usefulness of home health aide services between
wife and daughter subgroups of caregivers. Both groups were found to
perceive the service to be important to their care and to be highly
satisfied with the service received. Only two caregivers among these
users of services were dissatisfied with the care received.

This study should be replicated with larger groups of wife and
daughter caregivers. It should also be repeated with other
subsamples of caregivers to see how useful they find home health aide
services. What it is about the service that leads to caregiver
satisfaction, could be explored in a qualitative study. A study that
compares the perceived importance and satisfaction with the use of
this service by those who have used it in the past, but have stopped
using the service, would be valuable information. This is especially
important since home health aide service has been found to be the
most common of services. Much research has been done in the past
relating to caregivers, however, there still has been little done to
investigate what it is that caregivers find to be most useful or helpful
in their task, or whether specific subgroups of caregivers perceive

different services to be more useful. Not only what service is helpful.

41
but also why it is helpful would be important to know. More research
needs to be done in this area. Studies of a qualitative nature might
yield results that are more enlightening, due to the subjective nature
of perception.

The caregiving career for dementia caregivers usually spans
several years, during which the needs have been shown to increase.
Many patients eventually are institutionalized, but it has been shown
in a previous study that caregivers report that this too can be delayed if
they have the help of additional services such as home health aides
(Collins, King, 8: Kokinakis, 1994). It is important that research
continues to find out what services are truly helpful to caregivers, not
only to delay institutionalization, but also to give added support to
those who continue to care for their loved one at home.

Implications for nursing practice.

This study revealed that all the caregivers of dementia patients
using the service of home health aides perceived the service to be
either very important or somewhat important in helping with the
care of their relative, and 95% were satisfied or very satisfied with
the care received. It did not reveal any significant difference between
the subgroups of wives or daughters in this sample. Although just a
small number of caregivers were included in this study, this
information can be helpful to the nurse who is working with
dementia patients and their caregivers in planning for their care.

The nurse, whether in an acute care, home care, or primary care

42

setting, is active in assessing needs, mutual goal setting and planning
to meet the varied patient and caregiver needs. It is also important for
the nurse to explore with the caregiver different ways to organize the
service in creative ways, such as the possibility of having the aide in the
home for shorter time periods more often,longer time periods less often,
or perhaps providing the service at night so the caregiver can obtain
uninterrupted sleep. Education of the caregiver about various
questions to ask and ways to evaluate the service being used, so that
changes can be made if necessary is also an important consideration.

The nurse, especially the Advanced Practice Nurse, also serves as
a link between patients, caregivers, service providers, and planners on a
government level. Since dementia caregivers have been shown in other
studies (U. S. Congress, OTA, 1990) to use these services less than
other caregivers, it is important to know whether the service was useful
when it was used.

Knowing that a number of other caregivers, Qt}; wives and
daughters, who did use the services found them useful, can be an
important tool for the APN in advising caregivers who may need such
services. This information may be of help to the nurse who is
considering referral of the dementia patient for this service. The
nurse may also be counseling a caregiver who seems reluctant to
make use of this service, although the assessment of the nurse
indicates a need. The knowledge that others who tried the service

found it useful may "normalize" the service to the caregiver and

43

make a difference in her decision-making process.

APPENDICES

APPENDIX A

44
APPENDIX A

HEALTH SERVICE UTILIZATION

B. HOME HEALTH AIDES/HOME COMPANIONS/SITTERS

Home health aides (HHA), companions, or sitters may be hired
through an agency or privately, and usually provide personal care
such as bathing, simple health care, such as vital signs or giving
medicatons, light housekeeping or meal preparation in the home, or
just supervising your relative while you do something else. HHAs are
not usually nurses. Family or friends that are paid to provide this
assistance may also be included. (Does not include family or friends

if not paid.)

 

1. Have you used HOME HEALTH AIDES/COMPANIONS/SITTERS
for your relative in the past three months?

YES (1) N0 (2)

1a.

lb.

1d.

1e.

When did you begin using this service?

/ (month / year).
In the past three months, how often have you used this

service?
Number of times.

 

How important is this service in helping you care for your
relative? Is it

Very important (1)
Somewhat important (2)
Not important (3)

Overall, how satisfied are you with the service? Are you:

Very satisfied (1)
Satisfied (2 )
Dissatisfied ( 3)

Very dissatisfied (4)

APPENDIX B

 

Mmmnflthmwaw

3%Mmmwmm8wwm

ENmememmn
‘QQ+W“

MM§5DM
FAX' 517/432-1171

 

45

APPENDIX B

MICHIGAN STATE

[J hi I V’ E I! S l 1' Y

February 23, 1996

To: Barbara Holtrop
3820 Michael St.
Muskegon, MI 49444

RE: IRE“: 96-090
TITLE: USEFULNESS OF HOME HEALTH AIDE SERVICES AS
PERCEIVED BY WIFE AND DAUGHTER CAREGIVERS OF
RELATIVES WITH DEMENTIA
REVISION REQUESTED: N/A
CATEGORY: 2-H
APPROVAL DATE: 02/22/96

The university Committee on Research Involving Human Subjects'(UCRIHS)

review of this project is complete.. I am pleased to adVise that the

rights and welfare of the human subjects appear to be adequately

protected and methods to obtain informed consent are appropriate.

agerefore, the UCRIHS approved this progect and any reVisions listed
ove. A

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

RIVISIOIS: UCRIHS must review any changes in rocedures involving human
subjects, rior to initiation of t e change. If this is done at
the time o renewal, please use the green renewal form. To
revise an approved protocol at an other time during the year,
send your written request to the_ CRIHS Chair, requesting revised
approval and referencing the progect's IRE 8 and title. Include
in our request a description of the change and any revised
ins ruments. consent forms or advertisements that are applicable.

PROBLIIS/
cannons: Should.either of the following arise during the course of the
work, investigators must noti y UCRIHS 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 nelp, lease do not hesitate to contact us
at (517)355-2180 or FAX (517i4 2- 171.

Sincerely,

  
  

   

avid E. Wright.
UCRIHS Chair

DEW:bed

cc: Sharon King

LIST OF REFERENCES

46

List of References

Aday, L. A., & Andersen, R. (1974). A framework for the study of
access to medical care. Health Services Research, Fall, 208-219.

Aday, L. A., & Shortell, S. M. (1988) Indicators and predictors
of health services utilization. In S. J. williams & P. R. Torrens, (Eds).
Introduction to Health Services, (3rd ed. pp. 51-81). New York:

Wiley.

Bass. D. M., 8: Noelker, L. S. (1987). The influence of family
caregivers on elder's use of in-home services: an expanded conceptual
framework. Journal of Health and Social Behavior, 28(June), 184-196.

Bowers, B., 8: Liegel, B. (1990). Women as health care providers:
Family caregivers of the elderly. In C.J. Leppa (Ed.) Women’s Health
Perspecives: An Annual review, 261-292.

Brody, E. M. ( 1981). "Women in the middle" and family help to
older people. The Gerontologist, 21(5). 471-480.

Brody, E. M. (1985). Parent care as normative family stress. The

Gerontologist, 25(1). 19-29.

Brody, E. M., Johnsen, P. T., Fulcomer, M. C., & Lang, A. M.
(1983). Women's changing roles and help to elderly parents: Attitudes
of 3 generations of women. Journal of Gerontology,38(5) 597-601.

Cantor, M.H. (1983). Strain among caregivers: A study of
experience in the United States. The Gerontologist, 23(6), 597-604.

Caserta, M. S., Lund, D. A., Wright, S. D., & Redbum, D. E.
(1987). Caregivers to dementia patients: The utilization of community
services. The GerontologisLfli 2), 209-213.

Clark, N. M., 8: Rakowski, W. (1983). Family caregivers of older
adults: Improving helping skills. The Gerontologist, 23(6), 637 -642.

47

Collins, C. (1994). The impact of Alzheimer's Disease on family
caregivers. Executive Summary, #2 R01 MH 41766. Michigan State
University.

Collins, C., Given, B., 8: Given, C. (1994). Interventions with
family caregivers of persons with Alzheimer's disease. Nursir£Clinics
of North America 29(1), 195 -206.

 

Collins, C., Given, B., Given, C., & King, S. (1988). Interviewer
Training and Supervision. Nursing Research, 37 (2), 122 - 124.

Collins, C., King, 5., Given, C. W., 81 Given, B. (1994). When is a
service a service? Understanding community service use among family
caregivers of Alzheimer's patients. In E. Light, G. Neidermey, & G.
Lebowitz (Eds), Stress effects on family caregivers of Alzheimer's
patients (pp. 316-329). New York: Springer.

Collins, C., King, S., 8: Kokinakis, C. (1994). Community service
issues before nursing home placement of persons with dementia.

Western Journal of Nursing Research, 16(1), 40-56.

Collins, 0, Stommel, M., Given, C. W., 8r King, S. (1991).
Knowledge and use of community services among family caregivers of
Alzheimer's disease patients. Archives of Psvchigtric Nursing ,V(2), 84-
90.

Collins, C., Stommel, M., King, 8., & Given, C. W. (1991).
Assessment of the attitudes of family caregivers toward community
services. The Gerontologist, 31(6), 756-761.

Ehrlich, E., Flexner, S., Carruth, G., & Hawkins, J. (1980).
Oxford American Dictiona_ry. New York : Oxford University Press.

Fletcher, K. R., & Winslow, S. A. (1991). Informal caregivers: A
composite and review of needs and community resources. Family and

Communigg Health, 14(2), 59-67.

Fortinsky, R. H., 8: Hathaway, T. J. (1990). Information and
service needs among active and former family caregivers of persons
with Alzheimer's disease. The Gerontolgist,30(5). 604-609.

Ganzer, C., & England, S. E. (1994). Alzheimer's care and
service utiliztion: Generating practice concepts from empirical
findings and narratives. Health and Social Work, 19(3), 174-181.

George, L. K., 8: Gwyther, L. P. (1986). Caregiver well-being: A
Multidimensional examination of family caregivers of demented

adults. The Gerontologist, 26(3), 253-259.

48

Given, C. W., Collins, C. E., 8: Given, B. A. (1988). Sources of
stress among families caring for relatives with Alzheimer's Disease.

Nursing Clinics of North America, 23(1), 69-82.

Given, B. A., King, S. K., Collins, C., & Given, C. W. (1988).
Family caregivers of the elderly: Involvement and reactions to care.

Archives of Psychiatric Nursing, 1 1 (5), 281-288.

Green, C. P. (1991). Clinical considerations: Midlife daughters
and their aging parents. Journal of Gerontological Nursing, 17(11), 6-
12.

Greene, V. L., & Monahan, D. J. (1989). The Effect ofa support
and education program on stress and burden among family caregivers
to frail elderly persons. The Gerontologist,29(4). 472-477.

Haley, W. E. (1989). Group intervention for dementia family
caregivers: A longitudinal perspective. The GerontologisL 29(4), 478-
480)

Harper, 5., 81 Lund, D. A. (1990). Wives, husbands, and
daughters caring for institutionalized and noninstitutionalized
dementia patients: Towards a model of caregiver burden.
International Journal of Agi_ng and Human Development, 30(4),24l-
262.

Johnson, C. L., & Catalano, D. (1983). A Longitudinal study of

family supports to impaired elderly. The Gerontologist, 23(6), 612 -
618.

Krout, J. A. (1983). Knowledge and use of services by the elderly:

A critical review of the literature. International Journal of ging and
Hurn_an Development, 17(3). 153-167.

Kushman, J. E., & Freeman, B. K. (1986). Service
consciousness and service knowledge among older Americans.
International Journal (of) Aging and Human Development, 23(3), 217
- 237.

Lawton, M. P., Brody, E. M. , 8r Saperstein, A. R. ( 1989). A
controlled study of respite service for caregivers of Alzheimer's
patients. The Gerontologist, 29(1). 8-16.

Lieberman, M. A., 81 Fisher, L. (1995). The impact of chronic
illness on the health and well-being of family members, Gerontologist,
35(1). 94-102.

Liken, M. A.. 8: King, S. K. (1995). Home health aide services:
Barriers perceived by dementia family caregivers. Home Healthcare
Nurse 13(6), 60-68.

 

49

McCaslin, R. (1988). Reframing research on service use among
the elderly: An analysis of recent findings. The Gerontologist, 28(5),
592-598.

Michigan State University Faculty. (1990). Health service
Utilization Survey. Unpublished.

Mohide, E. A., Pringle, D. M., Streiner, D. L., Gilbert, J. R., Muir,
G., & Tew, M. (1990). A Randomized trial of family caregiver support in
the home management of dementia. Journal of American Geriatrics

Society, 38 (4). 446-454.

Montgomery, R. J ., & Borgatta, E. F. (1989). The Effects of
aternative support strategies on family caregiving. The Gerontologist,
29(4). 457-464.

Montgomery. R. J. V., Gonyea, J. G., & Hooyman, N. R. (1985).
Caregiving and the experience of subjective and objective burden.

Family Relations, 34(1), 19-26.

Montgomery, R. J. V., Kosloski, K., Borgatta, E. (1990). Service
use and the caregiving experience: Does Alzheimer's disease make a
difference? In D. E. Biegel & A. Blum, (Eds) Aging and Caregiving
(pp. 139-159). Newbury Park : Sage.

Polit, D. F. & Hungler, B. P. (1991). Nursing research:
Principles and methods (4th ed.). Philadelphia: Lippincott.

Quayhagen, M. P., & Quayhagen M. (1988). Alzheimer's stress:
coping with the caregiving role. The Gerontologist, 28(3), 391-396.

Sheehan, N. W., & Nuttall, P. (1988). Conflict, emotion, and
personal strain among family caregivers. Family Relations, 37(1), 92-
96.

Stone, R., Cafferata, G. L., & Sangl, J. (1987). Caregivers of the
frail elderly: A national profile. The Gerontologist, 27(5). 616-626.

Toseland, R. W., & Rossiter. C. M. (1989). Group intervention
to support family caregivers: A review and analysis. The Gerontologist,
@(4), 438 - 448.

United States Congress, Office of Technology Assessment (1990).
Confused Minds, Burdened Families: Finding Help for People With
Alzheimer's & Other Dementias (OTA-BA-403). Washington. DC: US.
Government Printing Office.

50
United States Congress, Office of Technologr Assessment

(1987). Losing a Million Minds: Confronting the Tragedy of
Alzheimer's Disease and Other Dementi_a_s_ (OTA-BA-324). Washington,

DC: U. S. Government Printing Office.

Wilson. H. S. (1989). Family caregiving for a relative with
Alzheimer's Dementia: Coping with negative choices. Nursing
Research, 38(2) 94-98.

Wolinsky, F. D., & Arnold, C. L. (1988). A different perspective
on health and health services utilization. Annual Review of
Gerontology and Geri_a_trics, 8. 71-101.

Zarit, S. H., & Toseland, R. W. (1989). Current and future
direction in family caregiving research. The Gerontolmgist, 29(4).
481-483.

"1111111111111)ill)“