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This is to certify that the
thesis entitled
THE EFFECTS OF CUES TO ACTION ON THE
USE OF FORMAL COMMUNITY SERVICES BY
FAMILY CAREGIVERS 0F PHYSICALLY DEPENDENT ELDERS
presented by

Julia Veretta James

has been accepted towards fulfillment
of the requirements for

MasteLQLSLienmdegree in Mg—r in

    

Major professor

Date Auglgt 4, 1994

0-7539 MS U is an Affirmative Action/Equal Opportunity Institution

 

 

LIBRARY
Michigan State
University

 

 

 

 

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TO AVOID FINES Mum on or baton data duo.

DATE DATE DUE DATE DUE

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

MSU In An Affirmative Action/Equal Oppommlty Institution
W

 

m1

THE EFFECTS OF CUES TO ACTION ON THE
USE OF FORMAL COMMUNITY SERVICES BY
FAMILY CAREGIVERS OF PHYSICALLY DEPENDENT ELDERS

BY

Julia Veretta James

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

MASTER OF SCIENCE

College of Nursing

1994

ABSTRACT
THE EFFECTS OF CUES TO ACTION ON THE

USE OF FORMAL COMMUNITY SERVICES BY
FAMILY CAREGIVERS OF PHYSICALLY DEPENDENT ELDERS

BY

Julia Veretta James

A modified version of the Health Belief Model forms the
conceptual framework for this study. Four variables derived
from this model and explored for their effect on formal
community service use were: perceived social support of the
caregiver; perceived competence to perform complex health care
activities by the caregiver; psychological distress of the
caregiver; and, physical distress of the caregiver. The level
of functional disability of the care recipient, gender of the
caregiver, martial relationship of the dyad, total number
residing in the household, and number of children under 18
were control variables.

Implications for advanced nursing practice and primary
care include researching cues to action with formal community
services that are under the control of the caregiver;
evaluating formal services use individually, rather than
grouping services together; and, educating other health care
professionals in the need to evaluate the entire caregiving

family for service needs, not just the care recipient.

This thesis is dedicated to my father
Albert D. Jordan III, who died during its preparation;
my immediate family,
James, Jennifer, Jason and Jeremiah James;
and, my family of origin,
Helen Jordan and her children, and my aunt Jenalice Jordan
without whose support this degree

could not have been completed

iii

ACKNOWLEDGEMENTS

A modified version of the Health Belief Model entitled
"Factors Influencing Community Service Use Among Family
Caregivers of Physically Dependent Elders" is derived from a
model entitled "Factors Influencing Community Service Use Among
Family Caregivers of Alzheimers Patients" of Drs. C. Collins, S.
King, B. A. Given and C. W. Given, from their studies entitled
"Impact of Alzheimer's Disease on Family Caregivers," (Grant #2
R01 MH41766, Principal Investigator, Clare Collins, Ph.D., R.N.)
and "Perceptions of Community Services by Alzheimer's
Caregivers," (Grant # PRG-89-098, Principal Investigator, Sharon
King, Ph.D., R.N.).

Data for analysis and scales of the four independent
variables: "Social Provisions," "Activities of Health Care,"
"Current Feelings," and "Caregiver Health," were derived from the
Michigan State University study, "Caregiver responses to managing
elderly at home" (Grant #2 R01 A606584-04, Principal

Investigators - C. W. Given, Ph.D. and B. A. Given, Ph.D. R.N.).

iv

TABLE

LIST OF TABLES . . .

LIST OF FIGURES . . .

INTRODUCTION . . . .

REVIEW OF LITERATURE

METHODS

RESULTS AND FINDINGS

LIST OF REFERENCES .

APPENDICES

APPENDIX
A.

B.

C.

D.

E.

F.

G.

The Social Provisions Scale
Activities of Health Care
Medical Outcomes Study Short

Center of Epidemiologic Studies -

OF CONTENTS

Depression Scale (CBS-D)

Relative Competency Ratings by Activity

(zscona) .

UCRIHS Approval

Consent Forms

Form-15

(nos SF-lS)

Page

vii

. 71

73

LIST OF TABLES

Table

1. Proposed Variables of the Study . . . . . . . . . .

2. Reliabilities and Descriptive Statistics for
Control and Independent Variables . . . . . . . . .

3. Absolute Competency Ratings of Caregivers Assisting
in Complex Care Activities (N=205) . . . . . . . .

4. Logistic Regression Results to Predict Use or
Non-Use of Five Formal Community Services . . . . .

vi

Page

37, 38

LIST OF FIGURES

Figure Page

1. Factors Influencing Formal Community Service Use Among
Family Caregivers of Physically Dependent Elders . . . . . 5

vii

INTRODUCTION

Background of the Problem

Many professionals theorize that the use of figrmgl
commumigy segvicgs may lessen the physical and psychological
distress of caregiving, increase the caregiver's competence
in complex care activities, and act as social support to the
caregiver (Biegel, Sales, and Schulz, 1991; Maslow, 1990).
However, a multitude of studies have found that there is
relatively low use of formal community services by
caregivers (Caserta, Lund, Wright and Redburn, 1987; Collins
& King, 1990; Gwyther, 1988, 1990; Lawton, Brody and
Saperstein, 1989; Montgomery and Borgatta, 1989; Stone,
Cafferata and Sangl, 1987; Yankelovich, Skelly, White,
Clancy, Shulman, Inc., 1986).

There have been many reasons offered for the relatively
low use of formal community services, including: a lack of
general information about services offered in the community;
family opposition to outsiders in the home; lack of health
care provider's referral; bureaucratic red tape in
eligibility requirements; unavailable, unaffordable, or
unacceptable services; fear of poor quality care of the
family member; societal attitudes that the woman's role is
to be the sole caregiver; and, ethnic and cultural attitudes
about the family taking care of its own (Kushman & Freeman,
1986; Collins, Stommel, King, & Given, 1991; Eckert & Smyth,

1988; United States Congress, Office of Technology

1

2
Assessment, 1990; Collins, King, Given, & Given, in press;
Hendrick & Inui, 1986; Gywther, 1990; Brody, 1981; Holmes,
Teresi, & Holmes, 1983). However, another way to approach
this problem is to explore the reasons for formal service
use among those who g2 use them.
statement of the Problem

The purpose of this study is to describe the effects of
cues to action, both external and internal, on the use of
formal community services by family caregivers. The cues to
action are derived from the Health Belief Model and are
depicted graphically in Figure 1.

The external cue to action considered in this study is
the pggceived adegmacy of infogmal social supporg. The
internal cues to action considered in this study are the
caregiver's appraisal of pegceived competence in health care
ggtiyitigs, physigal distzess and psyghologigal distgess.

If these cues to action are predictive of variation in
formal community service use, health care providers need to
know about it. This knowledge could be used to screen
caregivers while the care recipient was hospitalized and
find the caregivers who were most likely to use formal
community services. Thus, health care dollars could be
targeted and services offered to those most likely to use or
benefit from the use of the services. If policy makers were
aware that formal community service use was not only a

function of care recipient characteristics, but also of

3
caregiver cues to action, wiser policies might be
formulated.

To understand the importance of these cues to action on
the use of formal community services by family caregivers of
physically dependent elders, conceptual definitions of the
variables under study are presented, following Table 1 which
lists the proposed dependent, independent, and control
variables of the study and Figure 1, which shows the
theorized relationships among these variables.

REVIEW OF LITERATURE

Conceptual Definitions of the variables
as Derived from a Literature Review

Conceptual definitions of the variables of this study
will be derived from this review of literature. Variables
of the study are: 1) use of formal community services; 2)
perceived levels of social support; 3) physical distress of
the caregiver; 4) psychological distress of the caregiver;
5) levels of perceived competence to perform complex health
care activities for the elder.

Formal community service use has been conceptualized in
various ways. Formal community services have been conceived
as an intervention to reduce psychological distress or
physical distress (Stommel, Collins, Given, King, & Given,
1988; AnthonyeBergstone, Zarit, & Gatz, 1988; Haley, Levine,
Brown, & Bartolucci, 1987; Silven, DelMaestro, Gallagher,

Lovett, Benedict, Rose, & Kwong, 1986; Whitlatch, Zarit, &

4
TABLE 1. R0 8 D V ABLE OF E Y
DEPENDENT VARIABLES - FORMAL COMMUNITY SERVICES

1. Visiting Nurse Services (VNS)

2. Case Management Services
3. Adult Day Care
4. Chore or Housekeeping Services

5. Meals on Wheels or Home Delivered Meals

6. Occupational, Physical, or Speech Therapy
(OT/PT/Speech)

7. Family Support Groups

8. Health Professional Assists (HP Assists) with Complex
Health Care Activities of:

a. Urinary Catheter Care; b. Oxygen Administration;

c. IV/Hickman/Broviac Catheter Care and Dressing; d.
IV Medications]Fluids/Feedings; e. Tube Feedings or IV
Feedings; f. Injections; g. Special Exercises or
Physical Therapy; h. Bedsores/Ulcers Care; i. Other
Skin Problems; j. Colostomy Care; k. Post-Op Incision
or Wound Care; 1. Oral Medications; m. Nasogastric
Tube Care (NG); n. Urine Incontinence; o. Stool
Incontinence; p. Tracheostomy Care; q. Respirator
Care; r. Suctioning

INDEPENDENT VARIABLES - CUES TO ACTION

1. Perceived Levels of Social Support (SocSupp)

2. Perceived Levels of Competence to Perform Complex Health
Care Activities (Competnc)

3. Psychological Distress (Depress)

4. Physical Distress (PhysDis)

CONTROL VARIABLES

1. Number of Activities which Caregiver Assisted and Rated
his/her Competency (Comprats)

2. Caregiver Gender (Gender)

3. Spouse/Nonspouse Relationship between Caregiver and Care
Recipient (Relation)

4. Number of Adult Members of Family in Household (# in
House)

5. Number of Children in Household (I under 18)

6. Patient Limitations in Activities of Daily Living
(PADLs): a. Dressing; b. Eating; c. Bathing;
d. Walking; e. Toileting; f. Transferring

7. Patient Limitations in Instrumental Activities of Daily
Living (PIADLs): a. Cooking; b. Housework;
c. Shopping; d. Laundry; e. Transportation;
f. Money Management

 

FIGURE 1.

5

FACTORS INFLUENCING FORMAL COMMUNITY SERVICE USE

AMONG FAMILY CAREGIVERS OF PHYSICALLY DEPENDENT ELDERS

 

ERNAL CUES TO
ACTION

INFORMATION
REFERRAL
SUGGESTION
PERCEIVED LEVELS
OF SOCIAL
SUPPORT

 

 

 

 

CAREGIVERS/PATIENTS
ATTITUDES

 

 

 

CAREGIVER'S APPRAISALS
OF:

* PSYCHOLOGICAL
DISTRESS

* PERCEIVED LEVELS OF
COMPETENCE

* PHYSICAL DISTRESS

 

INTERNAL CUES TO ACTIONS

 

 

 

 

use or FORMAL
COMMUNITY
BEBEIQBS

* INITIAL USE
. CONTINUATION
. CESSATION

 

 

 

SERVICE
ATTBLBUTES
AVAILABILITY
ACCEPTABILITY

AFFORDABILITY

 

 

 

CONTROL

VARIABLES

. NUMBER or
COMPETENCY
RATINGS

.# in noose

.# UNDER 18

. nuns

. GENDER

. PIADLs

. RELATIONSHIP

 

 

 

 

6
von Eye, 1991); a compliment or a supplement tO the services
provided by the primary caregiver (Berry, Zarit, and
Rabatin, 1991; Lawton, Brody, & Saperstein, 1989; Greene,
1983; Noelker, & Bass, 1989; Stommel, Wang, Given, Given, &
Collins, 1992); and, as an outcome in a decision-making
model based on the Health Belief Model about the initiation,
use, and continuation Of formal services (Collins, King,
Given, & Given, in press; Collins, Stommel, King, 8 Given,
1991). The dependent variable in this study is the use Of
formal community services. It is in the later way that
formal services will be used in this study.

Formal community services are defined as services
provided by formally organized agencies in the local
community Of the caregiving dyad which may: supplement the
services in which the social support network is unwilling or
unable to assist the caregiver; decrease the physical or
psychological distress Of the caregiver; or, improve the
competence Of the caregiver by improving the caregiver's
skills in providing care in complex health care activities
or by supplementing those abilities. Services that may meet
these criteria are: Visiting Nurse Services (VNS); case
management services; adult day care; chore or housekeeping
services; home delivered meals; occupational therapy,
physical therapy, and/or speech therapy; family support
groups; and, health professional assists with complex health

care activities.

7

Pemgeiyed agggmacy of socigi suppgzt is the first
independent variable Of this study and is an external cue to
action in this model. Cobb (1976) suggests that social
support can be conceived as: information leading a person
tO believe that he/she is cared for and loved, esteemed and
valued, and belongs to a communication network. Kaplan,
Cassel, & Gore (1977) conceives social support as: the
degree to which a person's needs for affection, approval,
belonging, and security are met by significant others.

House (1981) conceives Of social support as: an
interpersonal transaction involving emotional concern,
instrumental aid, information, and/or appraisal. Several
researchers have stated that social support is a
multidimensional concept which includes the amount, types,
sources, and structure Of support (Dean, Lin, & Ensel, 1980;
ThOits, 1978).

Robert Weiss (1974) developed a conceptualization Of
social provisions which Offers a comprehensive view Of what
people receive from their relations with others. He
asserted that, for a person tO be adequately adjusted, the
person's social relationships must provide six social
provisions. These are: attachment, reassurance Of worth,
reliable alliance, guidance, social integration and
Opportunity for nurturance. Although Weiss did not conceive
Of social provisions as a buffer to life stresses such as
caregiving, his concepts of social provisions have been used

extensively in this way. The conceptual definition Of

8
social support for this study is derived from Weiss's Social
Provisions model. Adequate social support is defined as:
the provision Of adequate guidance, attachment, social
integration, and at least a reliable alliance through
relationships with others which is necessary for adjustment
in psychological and physical health and may affect the use
Of formal community services if social support is perceived
by the caregiver tO be inadequate.

The second independent variable and the first caregiver
internal cue tO action in this model is pemceived
cgmpetence. Few studies have used the term perceived
competence, but some similar concepts have been studied.
Arcthld, Stewart, Greenlick and Harvath (1990) described
caregiving as a role in which the person providing care
learned aspects Of the role and evaluated their own
abilities tO conduct the role. They termed this
“preparedness". Haley, Levine, Brown, and Bartolucci (1987)
conceptualized self efficacy in caregiving as: the level Of
confidence the caregiver felt in their ability to manage
specific activities Of daily living, instrumental activities
Of daily living, and behavior problems Of the care
recipient.

Lawton, Kleban, Moss, Rovine and Glicksman (1989)
employed the concept Of “mastery" as one component Of
caregiver appraisal and defined mastery as: the positive
view Of one's ability and ongoing behavior during the

caregiving process. Perceived competence may be only one Of

9
several internal cues tO action tO the caregiver in the
decision-making process Of whether or not tO seek and use
formal services (Collins, King, Given, & Given, in press).

A refinement Of this last conceptual definition, and
the definition Of perceived competence for this study is:
the caregiver's self appraisal Of his/her ability tO perform
complex health care activities for the care recipient with
requisite or adequate skills. Thus, lack Of perceived
gompetence may be an internal cue tO action Of the caregiver
tO seek and use formal services. These services may
supplement caregiver abilities, or lead to a gain in the
requisite skills needed to give competent care.

The second caregiver internal cue to action in this
model is physicai distress. Many researchers have found
that caregiving may have a negative impact on the
caregiver's physical health. This negative impact on health
may be called physical distress. Ware and Sherbourne (1992)
suggest that health status consists Of levels Of physical
functioning, role functioning, bodily pain, general mental
health, emotional effects on rOle functioning, vitality, and
general health perceptions. Given, Given, Stommel, Collins,
King, and Franklin (1992) surmised that different levels Of
dependency in the care recipient and different levels Of
depression in the caregiver have an impact on the
caregiver's physical health.

Biegel, Sales, and Schulz (1991) indicated that

caregiving can cause changes in the physical health Of the

10
caregiver which may influence the outcomes of caregiving
such as institutionalization Of the care recipient, and also
that deterioration in physical health can be an outcome Of
Caregiving. For this study, physicai distpess is
conceptualized as a multidimensional self appraisal Of the
caregiver that he or she has limitations in physical
functioning, role functioning, social functioning, a
negative appraisal Of one's own health, and pain which acts
as an internal cue to action in the decision-making process
about the use Of formal services. While mental or
psychological health is Often included as a factor in
physical distress, it will be considered separately in this
study.

The final internal cue to action and independent
variable of this study is psychoiogigai distgess.
Psychological distress is conceptualized as a measure Of
caregiver burden in most Of the early caregiving studies
(George & Gwyther, 1986; Poulshock & Deimling, 1984; Zarit,
Todd, & Zarit, 1986). More recently, psychological distress
has been viewed as either a temporary reaction tO caregiving
which may nonetheless effect long term consequences Of
caregiving such as formal service use or
institutionalization Of the care recipient (Elliot &
Eisdorfer, 1982; Given, Collins, & Given, 1988), or a long
term consequence Of caregiving (COhler, Groves, Borden, &

Lazarus, 1989) or both (Schulz, Tompkins, Wood, & Decker,

11
1987; Schulz, Thompkins, & Rau, 1988; Schulz, Biegel,
Morycz, & Visintainer, 1989).

Further, psychological distress can be manifested as
anxiety or hostility (Anthony-Bergstone, Zarit, & Gatz,
1988); depression (Dura, Stukenberg, & Kiecolt-Glaser, 1990;
and Schulz et al., 1987, 1988, 1990; Young & Kahana, 1989);
emOtional discomfort associated with performing specific
tasks Of caregiving; negative feelings about caregiving's
impact on the caregiver's health, well-being, family
relationships, and social life; negative emotions resulting
from the decline Of a loved one and negative emotions
resulting from the time and effort required by caregiving
(Thompson & Doll, 1982). For this study, psycholpgical ‘
distress is a multidimensional self appraisal Of a
caregiver's level Of negative affective status as expressed
in his or her depression and which may affect the
caregiver's decision to use formal services.

In addition to the independent and dependent variables
Of the study, several control variables are included in the
study. The control variables Of the study are: number Of
complex health care activities which the caregiver assists
the care recipient and rated himself/herself on competency,
gender Of the caregiver, relationship Of the caregiver to
the care recipient (spouSe/nonspouse), number Of adult
members in the household, number Of children in the
household, and the level Of functional disabilities Of the

care recipient as measured by patient limitations in

12
activities Of daily living and patient limitations in
instrumental activities Of daily living. These particular
control variables were selected because they were powerful
predictors Of the use or nonuse Of formal community services
in previous research (Colerick & George, 1986; National
Long-Term Care Channeling Demonstration Project, 1982, 1984,
1986; George & Gwyther, 1986; Montgomery, Gonyea & Hooyman,
1985).

In summary, there is empirical literature tO support
the conceptual definitions Of the independent and the
dependent variables Of this study.

Finally, the use of a model tO relate variables to one
another has been found useful in many research studies. The
decision tO use formal community services by the caregiver
is a process that involves input from the environment
(external cues to action) as well as appraisal Of the
individual (internal cues to action). Cues tO action is a
concept from the Health Belief Model. The Health Belief
Model has been used in many studies Of the use/nonuse Of
health services (Baric, 1969; Becker, 1974; Becker,
Drachman, Kirst, 1974; Kasl, 1974; Kirst, 1974; Mikhail,
1981; Rosenstock, 1974). The relationships between the cues
to action and use Of formal services will be discussed next.

Theoretical Basis of the Study

A modification Of the model from "Understanding

Community Service Use Among Family Caregivers Of Alzheimer's

Patients" by Collins, King, Given and Given which is

13

explained in the forthcoming bOOk, Empmp§_pi;egtipp§_in
Aizheimez's Disease and Family Stress is the basis for

Figure 1. The original model and this modification are both
based on the Health Belief Model.

Referring to the model in Figure 1, the following
variables are likely to influence the decision to use formal
community services: family caregiver and patient attitudes
towards community service use; service availability,
affordability, and acceptability; information, referral,
and/or suggestion were Offered to the family caregiver. If
these variables are present and positively affected the
caregiver's attitude towards the use of services, then the
remaining variables Of the model (starred in the model) may
be the deciding factors in the decision-making process.
These other variables consist Of caregiver cues to action
which are the focus Of this study. Caregiver cues to action
are the caregiver's subjective appraisals Of: the adequacy
or inadequacy Of their informal support networks (external
cue to action); their perceived competence or incompetence
tO care for the patient (internal one to action); their
physical distress caused by caring for their physically
dependent elder (internal cue tO action); their
psychological distress related to the care Of their
physically dependent elder (internal cue tO action).

The purpose Of this study is to determine whether these
cues to action predict variation in the use Of formal

community services among family caregivers Of physically

l4

dependent elders. The research questions derived from the

model in Figure 1 are:

1) Does the external cue to action, ieveis Of pegceiveg
informal social support, predict variation in the use
Of formal community services?

2) Among families whose elders required complex care, does
the internal cue tO action, levels Of perceived
c etence tO er O m e ea t e activit'es
for the elder, predict variation in the use Of formal
community services?

3) Does the internal one to action, physicai distress Of
the caregiver, predict variation in the use Of formal
community services?

4) Does the internal cue to action, psycholpgigai
distress Of the caregiver, predict variation in the use
Of formal community services?

Review and Synthesis of Empirical Evidence in the Literature
Concerning the Effects of Cues to Action on the Use of
Formal Community Services by Family Caregivers

There is literature to support the notion that
caregiver physical and/or psychological distress may one the
caregiver to use formal community services and there is also
literature to support the view that physical and/or
psychological distress is a barrier to the use Of formal
community services. There is literature that shows that low
levels Of perceived social support is a cue to the use Of
formal community services and there is literature tO support

the view that high levels Of perceived social support is a

cue to use formal community services, as more members Of the

social support network give more information about services.

Only one study has previously used perceived competence in

complex health care activities as a cue tO action for

caregivers and that study was Of caregivers' Of Alzheimer's

15
disease patients, rather than caregivers' Of physically
dependent elders. A summary Of that literature is presented
here.

Caserta, Lund, Wright and Redburn (1987) found that
caregivers who had begun to use formal services had lower
levels Of perceived social support than caregivers who were
not using formal services. Noelker and Bass (1989) found
that families move through the use Of assistance in stages.
Families begin using services provided by their informal
support network but move tO using formal services when the
level Of expertise required to give care or quantity Of care
exceeds that which can be provided by the primary caregiver
and their informal social support network. On the other
hand, families and other members Of the social support
network may facilitate the use Of formal services by
informing the caregiver about services available in their
community (Bass and Noelker, 1987). Thus while social
support seems to affect the use Of formal services, the
direction Of this effect remains uncertain.

Caregivers who perceive themselves to be competent in
managing the care Of their care recipient may not perceive a
need tO use formal services (Lawton, Brody, and Saperstein,
1989). Also, caregivers who perceive themselves tO be highly
competent report lower levels Of physical distress and
depression than caregivers-who report less competence
(Haley, Levine, Brown, & Bartolucci, 1987). Therefore,

formal community service use may be affected by the

16

caregiver's perceived competence level in two ways: a
direct influence on the use or nonuse Of formal services and
an indirect influence through its effects on the caregiver's
appraisal Of their physical and psychological distress.

Caregivers may become physically and psychologically
distressed before they decide to find and use formal
services (Bass & Noelker, 1987). Although caregiver
physical and psychological distress was predictive Of formal
service use, distress accounted for very little Of the
variation in formal service use studied by Noelker and Bass
(1989). But again there is evidence tO the contrary. In
studies Of Alzheimer's patients' caregivers, it was found
that physical or psychological distress may ppgygpp the
caregiver seeking formal services (United States Congress,
Office Of Technology Assessment, 1990). In this case,
physical or psychological distress may act as a barrier to
the use of formal services rather than act as a cue to
action. While the literature provides evidence that
physical and psychological distress affect the use Of formal
services, it is not yet settled in what way it affects use.

Rationale for the Present Study

This study continues the exploration Of a decision-
making process model, the Health Belief Model, which has
been widely used in health care research and has been
effective in discovering relationships between the
environment, the individual's appraisal Of the environment

and the use Of health care services. This study examines

17
four caregiver cues to action in the decision-making
process. Their effect on the use Of formal services within
the health belief model is presented graphically in Figure
1. This particular model was developed and used in the
study Of the effect Of caregiver cues to action, attitudes
and values on the use Of formal community services among
Alzheimer's patients (Collins, King, Given, 8 Given, 1992).
It has not been previously employed to study caregivers Of
physically dependent elders.

Therefore, the present study Offers both a continuation
Of the caregiving studies that have explored the
relationship between caregiver cues to action and the use Of
formal services and a new approach in applying this model to
caregivers Of physically dependent elders.

Most previous studies Of the use Of formal community
services are cross-sectional and have looked at service use
among long-term caregivers. This study, in contrast,
assesses the caregiver cues tO action (predictor variables)
Of psychological distress, physical distress, levels Of
social support, and levels of competency tO give care in
complex health care activities during the intake interview
(Wave I) which was conducted within six weeks Of discharge
from the hospital and then assesses the use Of services
(outcome variable) during Wave II which was conducted three
months after hospital discharge. Therefore, not only is
service use examined early in the caregiving process, but

also assessment Of use of services is at a later point in

18
time than the predictor variables. This allows the
researcher to, at least, establish the temporal sequence Of
the predictor variables and the outcome variables which has
not been done in most previous studies.

In summary, this study uses a model which has been
previously tested with caregivers Of Alzheimer's patients,
in a sample Of caregivers Of physically dependent elders;
examines new caregivers use Of formal community services;
and, examines caregivers' service use at two points in time-
ppedictiop Of service use based on cues to action, and
pesuip, variation in the use Of formal community services.

The results Of this study will add to the knowledge
base Of advanced practice nurses and primary care providers,
and be a basis Of policy making and program formulation, by
discovering if these caregiver cues to action effect
variation in the use Of formal services.

METHODS
The Sample

To address the research questions, the following
analyses are based on data from a sample Of patients
recently discharged from Midwestern hospitals with a variety
Of physical illnesses. The cases in this panel study were
screened for eligibility requirements of:

1) Care recipient age 55 or Older.

2) A primary caregiver at home tO assist the care
recipient.

3) New functional losses Of the care recipient following
discharge from the hospital.

19

In addition tO these eligibility criteria, the data for
this secondary analysis is further restricted to those
caregivers in Wave II, who completed Wave I and Wave II
phone interviews, and the Wave II self administered booklet
(SAB), N=250. This subsample was selected because only
cases who completed both the Wave I and Wave II telephone
interviews and the Wave II SAB answered all the questions
that relate to this study's research questions. Information
on the original study's human subjects' protection and
approval Of UCRIHS is included in Appendix F.

Operational Definitions,Instrumentation,and Analysis Plan
Table 1 presents a list Of all possible dependent,
independent and control variables to be used in this study.
The dependent variables Of this study measure use or nonuse

Of various formal community services. They are coded as
dichotomous categorical variables. 'Caregivers and their
care recipients are grouped into one Of twO categories:
They use or do not use any Of a number Of particular formal
community services. Twelve services were addressed in the
original study:

1) Doctor's Office visits.

2) Emergency Room or Urgent Care Clinic visits.
3) Overnight hospitalization.

4) Nursing home or rehabilitation center stay.
5) Visiting Nurse Services, (VNS).

6) Case management services.

7) Adult day care.

8) Chore or housekeeping services.

9) Meals on wheels or home delivered meals.

10) Occupational, physical or speech therapy.

11) Family support groups.

12) Paid assistance Of a family member or friend.

20

For the present study, the above list of formal
services will be divided into three categories: 1) medical
segviges which are the first four services listed, they are
not included in this analysis because, conceptually, they
are not formal community services which help maintain a
physically dependent elder in the community; 2) ENS; and, 3)
fopmai community services which make up the rest Of the list
gypgpp paid assistance by a family member or friend.
Conceptually, paid assistance by a family member or friend
should be considered part Of informal social support, and
therefore will not be included among the formal community
services. In sum, the formal community services included in
the following analyses are: case management services, adult
day care, chore/housekeeping services, meals on wheels/home
delivered meals, and occupational therapy/physical
therapy/speech therapy, and family support groups.

Visiting Nurse Services are used most Often by patients
and their families upon discharge from the hospital.
Conceptually, VNS is a medical service at that time as it is
Often ordered by the doctor to facilitate early discharge
from the hospital. However, Visiting Nurse Services, beyond
the initial discharge period, may or may not be used by
patients and their families, and may represent a formal
community service rather than a medical service. Therefore,
if VNS use is found to occur in Wave II (three months after
hospital discharge), it will be included as a formal

community service.

21

One additional formal community service considered here
is assistance by health professionals with complex health
care activities. In the Health Activities Questionnaire
(Appendix B) caregivers are asked whether the person(s) who
assists them in the complex health care activities are
health professionals. If the caregiver indicates that he or
she receives assistance in complex health care tasks by a
professional, then this will be considered formal service
use by this caregiver and is part Of the dependent
variables. The complex health care activities for which
assistance by a health professional is considered are:
urinary catheter care, oxygen use, IV/Hickman site care, IV
medication administration, tube feedings, injections,
exercises, care Of bedsores, care Of other skin problems,
colostomy care, post-Op incision care, oral medication
administration, care Of urinary incontinence, care Of stOOl
incontinence, nasogastric tube care, tracheostomy site care,
home respirator care, and suctioning. The health
professionals are: registered nurse, licensed practical
nurse, and/or home health care aide. If a patient receives
assistance from any Of these health professionals in any Of
the aforementioned activities, then the outcome is scored as
1 for "assistance by health professional" and 0 for nO
assistance in any Of these activities.

Because most studies have found that formal community
service use is low among family caregivers and many

statistical tests will yield insignificant results when

22

groups are too small, only those formal services used by 25
or more subjects will be examined as outcome variables.

Before considering the effects Of the independent
variables on the service use outcome variables, the outcome
variables will be crosstabulated and correlated with each
other using phi tO see if there are pattern(s) Of joint
usage Of several Of these formal community services. For
example, if it is found that most caregivers who used meals
on wheels also used chore[housekeeping services, then those
services would be combined into a single variable. Services
which do not group themselves will be analyzed separately.
If it is found that the use Of any given service does not
consistently predict the uSe Of any other, then each Of the
services with 25 or more users will have tO be analyzed
separately. ,

The independent variables Of the study are derived from
the research questions. The first independent variable Of
the study is perceived level Of social support. A self
report scale Of perceived social support that has been used
in many caregiving studies is the "Social Provisions Scale"
which was developed by Russell and Cutrona in 1984. It was
based on Weiss's theory about social support which provides
a multitude Of benefits its recipients (1974).
Psychometrics Of the scale have been very good in a variety
Of samples over the past ten years. Reliability and
validity Of the original twenty-four question scale was

reported by Russell and Cutrona at the American

23
Psychological Association Convention, Toronto (1984). A
modified 9-item version Of this scale was used to measure
perceived levels Of adequacy Of social support in the
Caregiver Studies and this study. Results from the
reliability analysis for this version Of the scale is
presented below in Table 3.

The revised version Of the "Social Provisions Scale,"
can be found in the Wave II Self-Administered Booklet and in
Appendix A. This scale uses a Likert response scale with 4
possible responses: 1=strongly disagree; 2=disagree;

=agree; =strongly agree. Questions 2, 4, 7, and 8 are
stated negatively so they are reverse scored to provide a
unidirectional scale. Summation Of item responses results
in a highest possible score Of 36, and a lowest possible
score Of 9.

The second independent variable is perceived level Of
gpmpgtepce tO perform complex health care activities. In
the Wave I Telephone Instrument, eighteen questions were
asked (questions 13 through 30 Of the telephone interview)
about complex health care activities or treatments, such as
urinary catheter care, IV medication administration, and
tracheostomy care, etc. (Appendix B). Each question
contains five parts:

1) Does your relative have or require help with...;

2) If yes, how frequently do you help your relative
with..;

3) If caregiver assists with the treatment, how competent
do you feel in helping your friend or relative with...;

24

4) If your relative has/requires help with..., how Often
do others help your friend/relative with ...;

5) If others help, are they family or friends or health
professionals or both?

The competence portion Of the questions uses a four
point Likert Scale from 0=not at all competent, to 3=
extremely competent. In order to construct a competency
scale from this questionnaire, which adjusts the competency
ratings for both the difficulty and the number Of care tasks
a patient needs assistance with, the following procedures
are adopted. For each complex health care activity in which
the caregiver is involved, his or her competency score is
standardized. Since caregivers are unlikely to find all
care activities equally difficult, their average raw
competency ratings will also reflect the overall difficulty
Of the care activities they happen tO perform. On the other
hand, a standardized competency rating will capture how
individual caregivers rate their competency relative pp the
average caregiver who performs that particular activity.
Since standardized individual competency scores represent
deviations from the norm, they can be summed and averaged
across individual activities. The relative competency score
(COMPETNC) Of an individual thus represents his or.her
average competency rating relative to all the caregivers
involved in the same assistance activities. Since the
number Of assistance activities can vary among caregivers,
an additional control variable is computed representing a

count Of all activities a caregiver is involved in

25
(COMPRATS). Table 2 presents a summary Of the Health Care
Activities questionnaire results which will be used tO
construct the competency scale.

The third independent variable is physicai distress pf
pug ggpggiyg; and will be measured with the Medical Outcomes
Study 20 item Short Form health survey (MOS SF-20). The MOS
SF-20 was developed at Duke University to measure health in
terms Of functioning and well-being as part Of the Medical
Outcomes Study (Ware, 1987; Stewart, Hayes 8 Ware, 1988;
Stewart and Ware (editors, in press). The SF-20 has been in
use for over eight years and has been found to be reliable,
with a variety Of age groups, races and diagnoses, in rating
a broad array Of health concepts in a short five to ten
minute survey.

The MOS SF-20 is found in the Wave II Self-Administered

Booklet. The MOS SF-20 consists Of six sub-scales:

1) A 6 item physical functioning scale;

2) A 5 item mental health scale;

3) A 5 item current health perceptions scale;
4) A 2 item role functioning scale; '
5) A single item pain scale;

6) A single item social functioning scale.

Each item Of the MOS SF-20 uses the Likert response
method for scoring, but the variOus sub-scales have
different numbers Of response categories. Stewart, Hayes
and Ware (1988) report the reliability and validity Of the
MOS SF-20 and its sub—scales.

For this study, all of the sub—scales except the mental

health sub-scale (SAB questions 33, 34, 35, 36 and 37) will

26
be used to determine physical distress of caregivers. Due
to the similarity Of the questions in the mental health sub-
scale and the CES-D, which will be used to measure
psychological distress, the mental health scale Of the MOS
SF-20 is omitted, resulting in a fifteen item scale. The
MOS SF-20 is usually scored so that high scores mean better
health in all scales except the pain scale and items f 22,
39, and 40 are reverse scored. However, this author will
use higher scores tO mean greater caregiver physical
distress so items #29, 30, 32, 38, and 41 will be reverse
scored; and items #22, 39, and 40 will be scored without
reversing. This gives a unidirectional scale with lower
scores indicating less caregiver physical distress and
higher scores indicating greater caregiver physical
distress. Reliability analysis will be done and reported on
this i5 item reyision and if the scale can be improved by
item deletion, this will be done and reported in Table 3.
The questions that form this 15 item scale are presented in
Appendix C.

The last independent variable is psychological distress
pf ppm caregiver. Psychological,distress will be measured
using the twenty question, Center Of Epidemiologic Studies -
Depression Scale (CES-D). The CES-D was developed as part
Of the Community Mental Health Assessment Program Of the
Center for Epidemiologic Studies. The CES-D was developed
for use with the general population to identify the presence

Of depressive symptomatology and its severity. The CES-D

27

TABLE 2. BELIABILITIES AND DESQBIPTIVE STATISTICS FOR
CONTROL AND INDEPENDENT VARIABLES

 

 

 

 

 

sgiigs CRONBACH'S MEAN INTER- SCALE SCALE VARIANCE
()=f ALPHA ITEM COR- MEAN STANDARD

OF ITEMS RELATION DEVIATION

PADL(6) .931 .689 11.108 6.185 38.250
PIADL(4) .817 .528 10.886 3.022 9.134
SOCIAL(9).87S .438 28.763 4.630 21.440
SUPPORT -

MOS-SF .916 .635 26.721 9.068 88.755
(14)

CES-D(20).929 .405 14.309 9.623 92.602

 

TABLE 3. ABSOLUTE COMPETENCY RATINGS OF CAREGIVERS
ASSISTING IN COMPLEX CARE ACTIVITIES (N=205)

 

 

VALUE FREQUENCY VALUE FREQUENCY
1.00 2 2.50 16

1.50 2 2.67 10

1.60 1 2.71 1

1.67 1 2.75 2

2.00 22 2.80 1

2.25 2 2.83 1

2.33 8 2.86 1

2.40 1 3.00 134
‘MEAN 2.747 STANDARD ERROR 0.029

MEDIAN 3.0 MODE 3.0
VARIANCE 0.174

 

28
uses a Likert response scale with 0 = rarely or none Of the
time; 1= some Of the time; 2 = most Of the time; and 3 =
almost all Of the time. Questions 4, 8, 12, and 16 are
stated positively so they will be reverse scored tO provide
a unidirectional scale. The possible range Of scores is
zero to 60 in this summated scale. In field tests in twO
communities the average scores ranged from 7.80 to 9.92 with
standard deviations Of 7.50 tO 9.31. A national survey
found a mean CES-D score Of 8.7 with a standard deviation Of
8.4 (Sayetta 8 Johnson, 1980). Radloff (1977) reported the
psychometric properties Of CES-D. The CES-D has been found
to have high alpha coefficients and split halves
correlations in measures Of its internal consistency and has
correlated well with other mental health measures in terms
Of discriminant validity.

This scale is found in the Wave II Self-Administered
Booklet in a section entitled "Current Feelings," (Appendix
D). The CES-D will be scored as discussed by Radloff and
Locke (1986), with a score Of above 17 indicating possible
depression and above 23 probable depression. Reliability
analysis will be done and reported on this scale and if item
deletion can improve the reliability this will be done and
reported in Table 3.'J

SPSS/PC+ software will be used in this analysis
(Norusis, 1991). Since the dependent variables, use Of

various formal community services, are dichotomous

categorical variables, logistic regression is the method

29
with which the data will be analyzed (Edens, 1987). A
logistic regression model will be used to discover how well
the independent variables Of the study: physical distress
Of the caregiver; psychological distress Of the caregiver;
perceived incompetence to perform complex health care
activities; and, perceived inadequate social support;
predict the probability Of formal community service use when
gender Of the caregiver, relationship to the care recipient
(spouse, nonspouse), number Of members Of the household,
number Of children in the household, number Of complex care
activities that the caregiver assists the care recipient
with, and the level Of functional limitations Of the care
recipient are used as the control variables.

The control variables measuring levels Of functional
limitations in the patient or care recipient, consists Of
the limitations in patient's activities Of daily living
(ADLs) and patient's instrumental activities Of daily living
(IADLs). They are measured as a count Of the relevant
activities in which the care recipient needs supervision, or
assistance to perform. ADLs considered in the study will
be: dressing, eating, bathing, walking, toileting, and
transferring. IADL's considered in the study will be:
cooking, housework, shopping, laundry, transportation, and
money management. Reliability analysis will be done and
reported on both scales and if the scales can be improved
with item deletion this will be done and reported in Table

3.

30

Only independent variables which have responses from 25
or more subjects will be used in the logistic regression
models. As shown below in Table 2, there are cases in which
caregivers do not perform any complex health care activities
or refused to answer questions concerning activities in
which they are not involved, thus resulting in missing
values for those cases. This has led tO further reductions
in sample size.

RESULTS AND FINDINGS
The Sample

The variables for this study were taken from four
interview tools Of the Wave II SAB and Wave I and II
Telephone Interviews. As noted in the "Final Report
Executive Summary Of Caregiver Responses tO Managing Elderly
Patients at Home", Of the 628 cases who completed the Wave I
interview, subsequently 65 died, 15 were institutionalized,
5 were hospitalized, 8 gained a new caregiver, 48 refused tO
participate further, 20 could nO longer be contacted, 6 were
lost to the study for other reasons, and 150 no longer
required care. This resulted in 249 caregivers who
completed these four measures and are thus available for
analySis. The mean age Of the patients was approximately 73
years Old and their caregivers were approximately 59 years
Old. Numbers Of nonspouse and spouse caregivers were almost
equal, spouse - 148, non-spouse - 102. However, women
caregivers outnumbered men caregivers nearly twO to one,

women - 105, men - 43.

31

Among the formal community services considered for
analysis, family support groups, adult day care, and home
delivered meals each had less than 25 subjects using them.
Given these small numbers Of service users, they were not
included in the logistic regression models. Formal
community services with 25 or more users were: VNS - 119
users; case management services - 27 users;
chore/housekeeping services - 37 users; and occupational
therapy/physical therapy/speech therapy - 55 users.

The Health Care Activities Questionnaire included a
question on assistance by a health care professional in all
18 complex care tasks listed. One hundred and forty-six
caregivers did not use health care professionals tO assist
them in any Of the health care activities, mainly because
the care-recipients did not have a need for assistance in
these activities. Most Of the other caregivers (N=76) had
assistance from a health professional in at least one health
care activity. Seventeen had assistance in twO activities,
and ten had assistance in three to eight activities. -
However, in three care activities (Nasogastric tube care,
Tracheostomy care, and Respirator care), caregivers used no
health professional assistance, these three activities were
dropped from further analysis.

Three more activities, (namely IV/Hickman care, Tube
Feedings, and Suctioning), were dropped from analysis
because every caregiver who performed those activities

responded that they were extremely competent resulting in mg

32
variation. This leaves the following activities: urinary
catheter care, oxygen, IV meds, injections, exercises,
bedsore care, other skin problems care, colostomy care,
post-op incision care, oral meds, urinary incontinence, and
stool incontinence.

Crosstabulations were performed on all Of the possible
two way combinations Of services, and it was found that in
only twO combinations did 25 or more subjects use twO
services. In those combinations (VNS with OT/PT/Speech
therapy and Exercises with OT/PT/Speech Therapy) the phi
statistics were not significant. In summary, the use or
non-use Of the first four formal community services appear
to be almost independent Of each other.

Since no service groups emerged that were used together
and the use Of health professionals in individual complex
health care activities was generally low, the following
procedure was adopted for further analysis: all Of the
complex health care activities were combined as a single
variable to be known as Health Professional Assistance; in
further analyses the resulting five community services or
service groups (VNS, Case Management Services,
Chore/Housekeeping Services, OT/PT/Speech Therapy, and
Health Professional Assistance), were examined separately.

The data in Table 2 summarize the reliability analysis
and descriptive statistics for all the scale variables used
as control variables (PADLs and PIADLs) or independent

variables (Social Support, MOS-15, CES-D). The reliability

33
analysis led tO two other changes in the final scales
employed. From the PIADL scale, twO items were deleted
(transportation and money management), because their
inclusion would have reduced alpha to 0.78. Further, one
ADL item was deleted from the new MOS-15, both on
statistical and conceptual grounds. Conceptually, this item
asked if the caregiver was limited in his/her ability tO
eat, dress, bath, or toilet his or herself, and caregivers
who are limited themselves in these ADLs are unlikely tO
continue caregiving. Statistically, this item would have
reduced alpha slightly to 0.9132. As the data in Table 3
reveal, after these small modifications, all scales display
excellent reliability.

Relative competency rating scales have not been used in
previous caregiving studies, therefore, there are no
reliability statistics for them. The competency scale was
constructed from a health care activities questionnaire
(Appendix B). Possible Competency Self-Rating Scores were:
0 = not competent at all; 1 = not very competent; 2 =
somewhat competent; and, 3 = very competent. Forty-three
caregivers did not assist the recipient in any Of the 18
listed complex health care activities, and thus were not
asked to rate their competence.

Although the possible raw competency scores ranged from
0 tO 3, ratings by all Of the caregivers in each activity

ranged from 2.20 to 3.00. As can be seen from these

34
figures, caregivers rated themselves somewhat tO very
competent in each Of the activities.

An absolute competency scale was constructed for all Of
the activities in which the caregiver assisted and rated
their competence (ABSCOMPR). Two hundred and five
caregivers rated their competence in all 18 activities.

This scale tOOk the raw competence scores and divided it by
the number Of activities the caregiver assisted (COMPRATS).
The values Of the absolute competency scale ranged from 1 to
3, this meant no caregivers rated themselves as not
competent at all in any Of the activities in which they gave
complex care. The values, frequency Of each value, mean and
its standard error, median, mode and variance are presented
below as Table 3.

As can be noted from this table, sixty-five percent Of
the caregivers rated themselves as extremely competent in
the activities in which the provided complex health care.
There was very little variance in the absolute competency
ratings. The relative competency ratings (COMPETNC) were
used as the independent variable in the logistic regression
because it adjusts for differences in the difficulty Of the
tasks.

The relative competency rating was computed based on
the standardized ratings by health care activity (ZSCORE).
The descriptive statistics Of the ZSCORES are reported in
Appendix E. A ZSCORE Of 0.000 means that a caregiver rates

him or herself as competent as the average among all

 

careg
activ
her 0
assis
than
more
that
care<

Cd! 8

indi
in \
+0.2
and
the
car.
and
ave
rat.
(+0.

Varj

Vari
10915
90331
meht:

“hinge

35
caregivers who assisted in that complex health care
activity. A negative ZSCORE means that a caregiver rated
her or himself less competent than the average caregiver who
assisted in that complex care activity. A ZSCORE greater
than 0.000 means that a caregiver rated himself or herself
more competent than the average caregiver who assisted in
that activity. As can be noted from the ZSCORES, most
caregivers rated themselves the same as the average
caregiver in each Of the activities.

Overall, Relative Competency Scale Scores (ZSCORES) for
individual caregivers, adjusted for the number Of activities
in which the caregiver assisted, ranged from -0.85 (N=1) tO
+0.32 (N=1), with a mean Of 4.3277 E -16, a median Of 0.026,
and a mode Of 0.026. Approximately twenty-five percent Of
the caregivers (N=50) rated themselves below the average
caregiver score in the scale (-0.85 to -0.04), one hundred
and two caregivers (‘50%) rated themselves very near the
average caregiver (-0.03 to +0.07) and 54 caregivers (‘25%)
rated themselves higher than the average caregiver score
(+0.08 to +0.32). Again, the scores indicate little
variation in caregivers' competency ratings.

TO test the hypotheses, dependent (service use)
variables were dichotomously coded, use versus non-use, and
logistic regression was performed on each Of the each Of the
possible services used by 25 or more caregivers. Five
identified dependent variables were employed: VNS, Case

Management Services (Case), Chore/Housekeeping Services

36
(Chore), OT/PT/Speech Therapy (OT/PT), and Health
Professional Assists with Complex Care Tasks (HP Assists).
Four independent variables tested were employed, consistent
with the research questions. They were: Social Support
(Socsupp), Physical Distress (Physdis), Psychological
Distress (Depress), and Relative Competence in Complex
Health Care Activities (COMPETNC). The independent
variables were entered simultaneously into the regression
with the following control variables: number Of complex
health care activities with which the caregiver assisted the
care recipient and rated their competency (Comprats), gender
Of caregiver (gender), caregiver's relationship to care
recipient (Relation), number Of persons residing in the
household (f in House), number Of children under 18 years
Old residing in household (# under 18), patient's ADL
limitations (PADL), patient's IADL limitations (PIADL), and
a constant. Table 4 displays the results of entering all
the variables on one step.

The results in Table 4 reveal only four significant
coefficients for the independent variables and none Of the
independent variables seem to be,related to the use Of
physical, occupational, or speech therapists or to the use
Of health professional assistance in complex health care
tasks. Social support affects the use of VNS (b=1.212,
p=0.015), social support and psychological distress affect
the use Of case management (b=1.232, p=0.049; b=0.076,

p=0.021), and physical distress appears to influence the use

37

Table 4. Legistic Regression Results to Predict Use or
Non-Use Of Five Formal Community Services

 

Dependent Variables

VNS Case Chore
independent
Variables B Sig. B Sig. B Sig.
Social 1.212 .015* 1.232 .049* .711 .317
Support
Physical .040 .088 .029 .311 .096 .004*
Distress
Psych. .017 .548 .076 .021* .006 .884
Distress
Competnc -.941 .467 .332 .827 4.839 .101
Conepol
Variables
Comprats .343 .026* .435 .026* .043 .861
Gender -.148 .778 -.585 .399 -1.266 .103
Relation -l.631 .001* -.065 .923 -2.053 .007*
f in House -.449 .098 .174 .697 -0.825 .185
# under 18 .406 .483 -7.346 .797 -6.272 .833
PADL .136 .531 -.157 .608 -0.484 .148
PIADL .763 .010* -.048 .904 0.840 .088

Constant -5.924 .003 -8.321 .004* -4.750 .169

Dependent Variables

VNS Case Chore
% Predicted 69.14% 88.96% 87.73%
Sensitivity 72.09% 14.29% 11.11%
Specificity 65.79% 100% 97.24%

VNS Likelihood Results
Chi-Square df Significance
-2LL with Constant 125.238
-2LL with variables 104.601 151 .999

Model Chi-Square 20.636 11 .037*
Improvement 20.636 11 .037*
Goodness of Fit 145.187 151 .618

CASE MANAGEMENT Likelihood Results
Chi-Square df Significance

-2LL with Constant 223.962

-2 LL with variable8181.555 150 .041*

Model Chi-Square 42.407 11 .000*
Improvement 42.407 11 .000*
Goodness Of Fit 157.604 150 .319

CHORE Likelihood Results
Chi-Square df Significance
-2LL with Constant 113.256
-2LL with variables 85.480 151 1.000
Model Chi-Square 27.776 11 .0035*
Improvement .27.776 11 .0035*
Goodness Of Fit 224.883 151 .0001*

 

38

Table 4 (cont.)

Independent

Variables
Social

Support
Physical

Distress
Psych.

Distress
Competnc

Control
Vaniables

Comprats
Gender
Relation
I in House
# under 18
PADL

PIADL

Constant

% gradicted
§ensitiyity

Specificity

-2LL with Constant
-2LL with variables
Model Chi-Square
Improvement
Goodness Of Fit

-2LL with Constant
-2LL with variables
Model Chi-Square
Improvement
Goodness Of Fit

pependent Vagiabies

OT/PT HP Assists
B Sig. B
-.187 .716 .456
-0007 0760 -0002
-.008 .794 .003
-1.712 .160" -l.003
.078 .630 .350
.718 .163 -1.584
1.200 .044* -.313
-0.258 .446 .217
.771 .251 -.559
.111 .633 -.165
.443 .157 .714
-1.732 .393 -3.030
Dependent Variables
OT/PT HP Assists
76.07% 63.80%
10.26% 56.41%
96.77% 70.59%
OT/PT/SPEECH Likelihood Results
Chi-Square df Significance
179.375
161.621 151 .263
17.754 11 .0875
17.754 11 .0875
160.797 151 .2775
HP ASSISTS 3133113303 Results
Chi-Square df Significance
225.665
202.504 151 .003*
23.162 11 .017*
23.162 11 .017*
162.361 151 .2495

Sig.
.290

.943
.895

.387

.017*
.003*
.478
.404
.316
.412
.011*

.086

 

39
Of chore services (b=0.096, p=0.004). Concerning the first
research question, leveleypf perceived informal social
support dO predict variation in the use Of two Of the five
formal community services studied - VNS and Case Management.
With respect to the second research question, levels Of
perceived competence to perform complex health care
acpivities for the elder does not predict variation in the
use Of any Of the five services studied. Regarding the
third research question, physical distress Of theecaregiver
does predict variation in the use Of chore services. In
response to the fourth research question, pevchological
distress Of the caregiver does predict variation in the use
of case management services. These few significant
coefficients are all positive which does not fit with the
Health Belief Model in all cases.

For example, the findings show that: (1) more physical
distress Of the caregiver raises the Odds Of using chore
services, and (2) more psychological distress raises the
Odds Of using case management. The signs Of these two
coefficients are consistent with the expectations based on
the theoretical model. However, the positive effect Of
greater social support on the likelihood Of having VNS and
Case Management services, at first, seems counterintuitive.

One possible explanation for the positive effect Of
greater social support on the likelihood Of using VNS and
Case Management services is reverse causation. Caregivers

may actually see VNS and Case Management as part Of their

40
social support. Since the use of services began at hospital
discharge and prior tO the Wave I interview, it is not
possible to disentangle the effect Of using these twO formal
services from the caregivers' perceptions Of social support.

Table 4 also shows that the competency rating Of the
caregiver does not seem to affect any Of the five formal
services. However, twO technical problems may account for
this finding. As noted earlier, there was little variation
in these competency ratings among the caregivers. Thus,
their variation cannot have a strong effect on variation in
the use Of services.

The other problem with the competency ratings appears
to be multicollinearity. When regression coefficients are
Of medium tO large size, but remain insignificant, this
Often indicates that the variable in question correlates
highly with other variables in the equation. The net effect
is, its individual contribution can not be disentangled.
Whatever the reason for the non-significant findings, on the
whole it can be concluded that the four independent
variables representing cues tO action could not be shown to
affect the likelihood Of use Of formal community services.

On the other hand, many Of the control variables affect
the likelihood Of using at least some Of the five formal
community services. However, the patterns are not
consistent. For example, spouse caregivers (relation=1) are
less likely that nonspouse caregivers (relation=0) tO make

use Of VNS or chore services but are more likely to have

 

 

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41
physical, occupational, or speech therapy services for their
care recipient. Three Of the control variables, number Of
people in the household, number Of children under 18 years
Old in the household, and patient's limitations in
activities Of daily living did not influence the Odds of
using any Of the formal community services in this study.
In addition, the sets Of control variables that have
significant effects on the five service use variables differ
depending on the service in question.

A further way Of looking at these logistic regressions
is to examine how well the independent variables combined
affect and predict the outcome in question. In particular,
the analysis will focus on goodness Of fit tests and
indicators Of the ability to predict service use. Both the
log likelihood test (-2LL) and the Pearson Goodness Of Fit
tests compare Observed sample values Of the outcome variable
(use or nonuse) to the predicted outcomes. These predicted
outcomes are probabilities Of use associated with each
case's constellation Of independent variables. Thus, a well
fitting model is one where the deviations Of Observed from
predicted outcomes are 391 statistically significant. By
that criterion, only the Chore service model does not do
well.

Another way Of looking at the predictive capacity Of
the models is tO compare these simple indices: (1) the
percent Of cases whose usage pattern (use or nonuse) has

been correctly predicted by the model; (2) the percent Of

42
users who have been correctly predicted (sensitivity); and,
(3) the percentage Of non-users who have been correctly
predicted (specificity). Since all Of the models predicted
correctly more than 50% of the cases, they did better than
chance for overall predictability. However, sensitivity
(the ability to predict users) was poor for three services
(case management, chore services, and physical]
occupational/speech therapy) and not great for the
assistance by health professional. By contrast, the models
did much better in predicting non-users Of services with
specificity readings of 97% for the Chore Services and
Physical/Occupational]Speech Therapy models and 100% for the
Case Management model.

In sum, the logistic regression models show their best
results in predicting who will HQ: use a particular service,
but not who will. In addition, among the individual
predictor variables, the control variables seemed to have
greater predictive power than the independent variables
which are the focus Of the theoretical model. In this
study, cues to action as Operationalized here, do not seem
to contribute tO our ability tO predict the use Of formal
community services.

Limitations of the Study

In assessing why the cues tO action did not contribute
to our ability to predict the use Of formal community
services, it was found that the order Of the questions in

the health activities questionnaire may have contributed to

43

the technical problem Of small variation of perceived
competence among the caregivers. The questionnaire asked
the caregivers if they assisted in the care Of their family
member or friend and, only if they answered ‘yes', were they
then asked tO rate their competence. It is therefore
possible that caregivers who did not perceive themselves to
be competent tO perform complex health care tasks for the
care recipient had decided not to assist the care recipient
and only the caregivers who perceived themselves as
competent tO perform these tasks were questioned about their
levels Of competence. If the questionnaire had first asked
the caregivers about their competence to perform complex
health care tasks, then asked about their own assistance,
and finally asked if they used health professionals to
assist the care recipient in tasks for which they did not
feel competent, then there may have been much more variation
in the responses to the competency portion Of the
questionnaire and the tOOl may have been a better predictor
Of formal community service use. Another problem with the
health activities questionnaire is that it does not ask if
the health professional who assists is part Of VNS services.
This may account for the multicollinearity encountered in
the Health Professional Assists model and the VNS model.

The timing Of asking the questions about social support
in relation tO the VNS and Case Management Services models
may have been a problem. If the caregivers had been asked

during the hospitalization Of their care recipients about

44
their perceptions Of their levels Of social support, this
may have improved the ability Of perceived levels Of social
support tO predict the use Of formal community services
rather than when VNS and Case Management may have become
part Of their social support network.

The social support questionnaire used does not ask
caregivers about assistance received from family or friends
in terms Of physical labor, or in terms Of monetary
contributions that could pay for assistance tO the care
recipient or the caregiver, nor does it ask the health care
expertise levels Of members in their social support network.
The Social Provisions Scale does ask caregivers about
sources Of guidance, social integration, emotional
attachment(s) and reliable alliance(s) in their lives.

It is possible that some Of the caregivers had members in
their social support network who were competent to assist
the patient in complex health care activities, or in other
ways which could have reduced the physical, and/or the
psychological distress that may be a result Of caregiving.
Because these questions were not asked, it is not possible
to rule out that some Of the lack_of ability to predict the
use Of formal services is due to not asking the right kinds
Of questions about social support.

The health care activities questionnaire does ask about
the assistance Of family or friends in complex care
activities. In retrospect, this could have been used as

part Of the social support predictor and may have improved

45
the ability Of social support to predict variation in the
use Of formal community services.

There are many other independent variables that may
predict the use Of formal services besides the four cues to
action which were selected for this study. Several
variables within the model which may predict the use of
formal community services and which were not studied
include: referral; information; suggestion; caregiver
attitudes and patient attitudes; and availability,
affordability, and acceptability Of formal services. Other
independent variables that might be related tO the use Of
formal services that were not included in this study and
were not in the model were derived from a review Of
caregiving literature.

Given, Given, Barry and Lin (1993) found that patients
refenred for formal services had more functional
limitations, were Older, and needed more medical treatments,
than patients who were not referred for formal services.
The caregivers Of patients referred for formal services were
more likely tO be female, non-spouse and to live separately
from the care recipient. Actualineepe Of formal services
were found to be patients who had greater functional
limitations than non-users Of formal community services and
patients who had employed caregivers. Gender Of the
caregiver, spouse/nonspouse relationship, number Of complex
health care activities in which the caregiver assisted and

level of functional limitations were used as control

46

variables in this study because Of these findings and here

again proved to be significant.

Several other studies also report that the strongest
predictors Of use Of formal service are the age Of the care
recipient and the extent Of the patient's impairments (Hess
8 SOldO, 1985; Noelker 8 Wallace, 1985; Given, Stommel,
Collins, King 8 Given, 1990). Bass and Noelker (1987) found
that higher levels Of caregiver strain were predictive Of
formal service use. Other variables that may be related to
formal service use include:

1) Payer Of services, as there is anecdotal evidence
that caregivers do not use formal services if they
must pay for them out Of pocket (National Long-Term
Care Channeling Demonstration, 1982, 1984, 1986).

2) Number Of household members, as these may assist the
primary caregiver with the elder (Stommel, Wang, Given,
Given, 8 Collins, 1992). This was used as a control
variable in this study.

3) Number Of children Of the primary caregiver, as the
caregiver may need more services tO care for more than
one dependent (Stommel, Wang, Given, Given, and
Collins, 1992). This also was used as a control
variable in this study.

4) Socioeconomic status Of the caregiver.

5) Educational background Of the caregiver.

It has been found in several research studies that
better educated caregivers and caregivers Of higher
socioeconomic status use more services for onerous tasks
than caregivers who are less educated or of lower
socioeconomic status. Also, caregivers who are better

educated and Of higher socioeconomic status are more likely

to participate in research studies than caregivers who

47
refuse to participate (National Long-Term Care Channeling
Demonstration, 1982, 1984, 1986; Rosenthal 8 Rosnow, 1975).

Other difficulties in this study, besides the
predictive values Of the independent variables chosen and
those not chosen is the fact that the sample is not random
and the caregivers who agreed tO participate may not be
representative Of the population Of caregivers in the United
States. SO even if the results Of this study Of cues tO
action in the use Of formal community services by family
caregivers had been more satisfactory, the results could not
be easily generalized tO other populations Of caregivers.
This is called sample bias (Hochbaum, 1958).

Sample bias in caregiving research has been reported by
Dura and Kiecolt-Glaser (1990), in mental health research by
Bebbington, Harry, Tennant, Sturt and Wing (1981), and in
general survey research by Rosenthal and Rosnow (1975).
Rosenthal and Rosnow also reported that research
participants were more likely to be women, better educated,
and Of higher socioeconomic class than non-participants.

The sample from the MSU family caregivers studies,
"Caregiver Responses to Managing'Elderly Patients at Home",
have some Of these same characteristics. Most caregivers
‘were women who were better educated and Of higher
socioeconomic class than caregivers who refused tO
participate and than the general population Of the United
States. Another characteristic Of the MSU sample that makes

it problematic to generalize to the larger population in

48
general is the high percentage Of whites who participated.
Little can be discovered about the differences between
caregivers Of different ethnic backgrounds or races from
this sample because few minority caregivers participated.

The dependent variables chosen for analysis were
limited to those which had 25 or more users Of formal
community services among the caregivers and care recipients,
but these selected services may not be services for which
cues to action have any bearing. Instead, use Of these
services, especially VNS, Case Management Services,
Occupational/Physical/Speech Therapy, and Health
Professional Assistance, may be affected by the decisions Of
discharge planners about characteristics Of the patient or
availability Of the service in the community or even
eligibility Of the dyad for third party payment for those
services. The only service used in this study which may
have been under the control Of the caregivers' ability to
decide tO use the service and therefore influenced by
caregiver cues to action is Chore Services.

Therefore, finally, the model chosen may not have been
appropriate for the services chosen in this study. More
appropriate models for this study's dependent variables
(formal community services) may be either a model which
focuses on the environment Of health care delivery such as
the "access to medical care" model developed by Aday,
Andersen, and Fleming originally in 1980, and revised and

depicted graphically by Urrutia-Rojas and Aday (1991), or a

49
model Of "transitions" as when there are role changes and
identity changes in course Of family life such as from
family member or friend tO caregiver and from family member
to family patient or care recipient. Such a model was
developed by N. K. Schlossberg (1981) and recently expanded
and depicted graphically by Schumacher and Meleis (1994).
Both models acknowledge that not all decisions are under the
control Of the caregiver, but rather may be influenced by
the services available in the community, eligibility Of the
caregiving dyad for third party payment, or care recipient
functional limitations in activities of daily living or
instrumental activities Of daily living.

In summary, cues to action did not work well with the
five formal services in this study because the use Of at
least four Of these services may not be influenced by
caregiver decisions. The only service that may have been
influenced by caregivers' cues to action was
Chore/Housekeeping services. More important influences on
the use Of formal community services in this study were the
control variables which are not cues tO action.

Non-spouse caregivers were more likely to use VNS and
Chore/Housekeeping services. Care recipients who had more
limitations in Instrumental Activities Of Daily Living
(PIADLs) were more likely to use VNS and/or Health
Professional Assistance in complex health care activities.
Male caregivers were more likely to use Health Professional

Assistance in complex health care activities. Caregivers

50
who assisted in a greater number Of complex health care
activities were more likely tO use Health Professional
Assistance in those activities, VNS, and Case Management
services. These findings agree with previous studies Of
caregiving. A surprising finding was that spouse caregivers
were more likely to use OT/PT/Speech Therapy services than
non-spouse caregivers. It is doubtful that being a spouse
has any influence on the use Of this formal service. A much
more likely explanation is that this is just a statistical
anomaly.

Implications for Existing Literature and
Recommendations for Future Research

For the formal community services selected for study,
the caregiver cues tO action from the theoretical model did
not predict service users well. More Of the control
variables were important in the predictive power Of the
models than the independent variables. These were: Number
Of complex health care activities in which the caregiver
assisted the care recipient, gender Of the caregiver,
relationship of the caregiver to the care recipient
(spouse/non-spouse), and patient's limitations in
instrumental activities Of daily'living. Of these control
variables, only the number Of complex care activities in
which the caregiver assisted the patient, is amenable tO
change and could be another cue tO action. In this study,
the number Of complex health care activities was predictive

Of use Of VNS, Case Management Services, and Health

51
Professional Assistance. Future studies Of the use Of these
formal services should consider the number Of complex health
care activities in which the caregiver will be involved upon
discharge Of the patient from the hospital as a cue to
action.

NO previous study has created and used a Relative
Competency Rating Scale Of caregivers involved in complex
health care activities for care recipients. This scale
allowed the researcher tO see how caregiver‘s perceive their
competency in relation tO the average caregiver performing
those same activities. In this study, the scale's
construction produced a fairly symmetric distribution. In
future studies, relative competency ratings should be taken
while the care recipient is hospitalized tO see if the
caregiver perceives him/herself to be competent in the
complex health care tasks required by the care recipient
upon discharge and what level Of competency predicts service
use and/or need. Various nursing interventions should be
tried to increase or supplement the caregiver's competency,
such as education in the skills needed, identification Of
members in the caregiver's informal support network who have
the competency to assist the caregiver and care recipient in
complex health care tasks, and identification Of and
referral tO community services when there is a need. By

changing the order in which the questions are asked in the

Complex Health Care Activities Scale, a much more useful

 

52
tOOl Of research in use Of formal community services may be
developed.

Several formal services were deleted from further
analysis due tO their small number Of users. Future studies
examining how caregiver cues tO action Of physical distress,
psychological distress, perceived social support and
perceived competence affect services should be conducted on
services not included in this study - support groups, adult
day care, and home delivered meals. Conceptually, these are
services that may reduce the burden Of the caregiver and the
decisiOn to use these services may be under the control Of
family caregivers. Therefore, results from such studies
could have wide implications for both programs and policies.

Another approach may be tO match some Of these
caregiver cues to action to services on which they may have
a more direct effect. For example: using social support
levels and psychological distress levels to predict use Of
support groups; or physical distress tO predict use Of
chore/housekeeping services, home delivered meals, and/or
adult day care; or perceived competence in complex health
care tasks and inadequate social‘support (as caregivers may
rely on members Of their social support network to dO care
in which they dO not feel competent) to predict the use Of
VNS and health professional assistance prior to hospital
discharge may be a more valid study than entering all Of the
independent and control variables simultaneously into the

service models.

53

A very important insight gained form this study was
that use Of one service did NOT predict the use Of any other
service. In all Of the articles that were reviewed for this
study, the use or nonuse Of formal community services was
grouped as a single outcome variable. Future studies should
examine the use Of formal community services individually
and see if prediction Of service use may be improved.

Finally, use Of physical[occupational/speech
therapists, case management services, VNS, and health
professional assistance may be unrelated to the caregiver
cues tO action selected for this study. These services may
be influenced by third party payment eligibility, and/or
decisions Of a hospital discharge planner who only considers
the care recipient's characteristics and physical needs, and
the services available in the caregiving dyads' home
community. An ecological model such as the Medical Access
model or a change model such as the Transitions Model may be
more appropriate for the prediction Of the use or nonuse Of
these four services.
Implications for Advanced NUrsing Practice and Primary Care

For the most part few caregivers used formal services.
Surprising was the number of care recipients who used
Visiting Nurses Services (45%) during the second wave Of the
caregiver studies as this was three months post hospital
discharge. However, upon reading the final report Of the
original study, it was noted that approximately 65% Of the

patients had been readmitted to the hospital between Waves I

54
and II. The caregivers who had VNS may have become
accustomed to the use Of health professionals to assist in
care or, VNS could have been ordered by medical staff after
the second admission in an attempt tO prevent another
readmission to the hospital, either one or both Of these may
account for some Of the VNS use at Wave II.

VNS use and use Of health professional assistance in
complex health care activities were predicted fairly well by
the logistic regression models. Both Of these services are
high cost items and require highly trained personnel. As
such, being able to predict users Of these services would be
important to hospital discharge planners and caregiver
characteristics should be considered in discharge planning
as well as care recipient needs. All Of the caregiver cues
to action in this study could be assessed prior tO
discharge, so that the hospital discharge planner is aware
of the caregiver's need status and decisions for services
include this input. The role Of the Nurse in Advanced
Practice (ANP) in this situation is tO be an advocate for
his or her client. Often discharge planners are
overburdened with multiple cases‘and little time for
individual attention to caregiver needs. The ANP has a.
.knowledge Of their clients and the clients' needs that has
developed over the years and by informing the discharge
planner about unique needs and situations, thus the ANP can
be an advocate for the caregiver and the care recipient.

‘The ANP works with families and as such knows the needs Of

55
not only the patient but also the rest Of the family. As
the ‘expert', the ANP should educate other health care
providers with whom the family has contact about family
needs and how families can be assisted in their caregiving
roles and tasks.

The physical status Of the caregiver should be
considered in hospital discharge planning as physical
distress was significant in the chore services model.
Housekeeping in addition tO caregiving can be stressful to
the caregiver. This is especially true if the caregiver
does not live with the care recipient as would be the case
when the relationship between the caregiver and the care
recipient is nonspouse, which was a significant control
variable in this model. The ANP again is the most likely
person to be aware Of these situations and should
collaborate with the primary care nurse, social worker or
discharge planner tO assist the family caregiver and patient
in making the transition from hospital to home as easy as
possible for the family including dealing with such
instrumental activities Of daily living as housekeeping,
shopping, and transportation which may be difficult for the
newly discharged client and for the caregiver, and may not
be factors generally considered by hospital personnel.

Psychological distress and social support should be
assessed in caregivers prior to the care recipients
discharge from the hospital, and if social support is not

perceived as adequate by the caregiver, then services to

56
mobilize his or her support system or to provide a support
system should be implemented. The social support may help
the caregiver to maintain their sense Of being cared for as
they give care and prevent or ameliorate some of the
distress caused by caregiving. A baseline Of the
psychological status Of the caregiver taken prior tO the
patient's discharge or even during a routine visit to the
primary care provider prior to the beginning Of the
caregiving experience could then be followed over the course
Of the caregiving experience and if there is an increase in
psychological distress during the experience, appropriate
interventions could be implemented.

The more complex the tasks that the caregiver must
perform and the more the number Of these tasks that the
caregiver must perform for the care recipient, the more
likely the caregiver is to use formal services. Every
caregiver should be fully assessed prior to the patient's
discharge for their knowledge Of the tasks, for their
ability to cope with these tasks both physically and
emotionally, and for the extent and level Of expertise
within their social support network. Those caregivers who
can not handle these complex tasks should be helped with
appropriate services tO support them.

Family caregivers are an ‘at-risk' group. They are
Often forgotten by hospital health care professionals when
dealing with patients. Caregiving can be a burden that

results in physical health deterioration, psychological

57
distress, feelings Of guilt about being incompetent to
perform complex health care tasks, and feelings Of isolation
from their social network due tO the time needed to care for
their loved one. Therefore, the ANP as a clinician should
make an effort to be aware Of the clients needs and
situations and intervene with appropriate actions to assist
caregivers before the at-risk caregiver becomes the patient.
This requires not only a knowledge Of the caregivers within
the practice, but also a knowledge Of the resources in the
community, a willingness to refer his or her clients tO
services, an organizational ability tO develop new resources
as needed, and the persistence tO continue seeking resources
in the face Of budget restraints that are narrowing the
eligibility requirements and reducing the programs available
tO assist caregivers.

Caring for ones clients after the crisis Of
hospitalizatiOn Of their loved one is just the beginning.
The ANP or other primary care provider must frequently
evaluate the formal services Offered tO their clients and
together plan how the family will continue caring for the
patient after the service is diseontinued. The family and
the ANP should also evaluate the services for quality and
appropriateness Of the service. If the service is not
meeting the needs Of the family or if the needs Of the
family have changed since discharge, then the ANP and the
family should seek more appropriate services. They should

discontinue services when they are no longer needed, not

58
just continue services until the client's eligibility runs
out.

Many cultures and subcultures within our society
believe that the family should care for its own or the woman
should be the sole caretaker Of the family. These
caregivers may be at higher than average risk for physical
distress or psychological distress from the isolation Of
caregiving, or other potential adverse outcomes Of
caregiving which may include abuse Of the care recipient.
The ANP may need tO give caregivers permission to use
services to avoid such adverse outcomes.

Advanced Nursing Practitioners interact with both
families and service organizations within their communities.
This provides an Opportunity to conduct research into the
effects Of services upon families and to see the results Of
interventions that come Out Of the research first hand.
Publication and dissemination Of the knowledge gained from
this research should be a priority for the ANP. Quality Of
care and cost effectiveness can not be shown without
evaluative research. Other practitioners need to have a
sound basis for both their interventions, and their research
in their own practices. Published research findings can be
that basis. 3

In the near future, health care reform regulations may
require that practices prove both the quality and cost

effectiveness Of their care before the practice is paid for

59
their services, and therefore, jobs in health care may
depend on this research.

In summary, the Nurse in Advanced Practice has many
important supporting roles tO play in his or her
interactions with family caregivers, other health care
providers, and with service organizations. The ANP may need
tO be at various times a collaborator, an educator, an
advocate, a researcher, an evaluator, a referral source, as
well as a clinician in support Of the family caregiver who
is doing a job that most feel is one Of the most important

in their lives - Caregiving!

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Archives Of internal Medicine, i48(10), 2177-2180.

Anthony-Berstone, C., Zarit, S., 8 Gatz, M. (1988).
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Archbold, P. G., Stewart, B. J., Greenlick, M. R., 8
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Colerick, E. J. 8 George, L. K. (1986). Predictors Of
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APPENDIX A

THE SOCIAL PROVISIONS SCALE

JAPPTHUIEX A;

THE SOCIAL PROVISIONS SCALE

In answering this set Of questions think about your current
relationships with friends. family. family members and community
members. PLEASE IDENTIFY HOW MUCH YOU AGREE WITH EACH STATEMENT. For
example, if you feel a statement is very true of your current
relationships, you should circle STRONGLY AGREE. If you feel a
statement clearly does not describe your relationships, you should
circle STRONGLY DISAGREE. Circle pne response for each statement.

1. There are people I can depend on to help me if I really need it.

STRONGLY STRONGLY
DISAGREE DISAGREE AGREE AGREE

2. There is nO one I can turn tO for guidance in times of stress.

STRONGLY STRONGLY
DISAGREE DISAGREE AGREE AGREE

3. There are people who enjoy the same social activities I do.

STRONGLY STRONGLY
DISAGREE DISAGREE AGREE AGREE

4. If something went strong, no one would come to my assistance.

STRONGLY STRONGLY
DISAGREE DISAGREE AGREE AGREE

5. I have close relationships that provide me with a sense Of emotional.
security and well-being.

STRONGLY STRONGLY
DISAGREE DISAGREE AGREE AGREE
6. There is someone I could talk to about important decisions in my
life.
STRONGLY STRONGLY
DISAGREE DISAGREE AGREE AGREE

7. There is no one whom I can depend for aid if I really need it.

STRONGLY STRONGLY
DISAGREE DISAGREE AGREE AGREE
8. There is no one with whom I feel comfortable talking about my
problems.
STRONGLY STRONGLY
DISAGREE DISAGREE AGREE AGREE

9. I feel strong emotional bond with at least one other person.

STRONGLY STRONGLY
DISAGREE DISAGREE AGREE AGREE

70

APPENDIX B

ACTIVITIES OF HEALTH CARE

APPENDIX B

ACTIVITIES OF HEALTH CARE

The nest set of questim include health care activities or treat-ants that ( ) may or may not

require.

"film about how you and others help.

First, I will ask it ( ) requires this kind of help, and than I will have additional

 

 

INTERVIEWER: 'lhefollowing questions have four sections: A,B, C, &D.
AskSecfionA—eechitemforallcaregivers.
IfanswerinsectionAisNO-gotonextitem.
HanswerinsectionAisYES-gotosectionn.
HenswerinsectionBisNEVER oro-gotosectionl).
HenswerinsectionB‘nl,2,3,or4-gotosectionCthentosectionD.
IfsnswerinsectionDisl,2,3,or4-gotosectionl§.

 

 

(MARK THE APPROPRIATE ANSWERS FOR EACH)

 

 

 

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72

APPENDIX C

MEDICAL OUTCOMES STUDY SHORT FORM - 20 (MOS SF-20)

APPENDIX C
MEDICAL OUTCOME STUDY SHORT FORM - 15 (M08 SF-lS)

22. In general, would you say your health is: (CIRCLE ONE)
EXCELLENT VERY GOOD FAIR POOR

For how long (if at all) has your health limited you in each of the
following (CIRCLE ONE FOR EACH)

23. The kinds or amounts Of vigorous activities you can do, like
lifting heavy Objects, running, or participating in strenuous sports.
(CIRCLE ONE).

LIMITED FOR MORE LIMITED FOR 3 NOT LIMITED

THAN 3 MONTHS MONTHS OR LESS AT ALL

24. The kinds or amOunts Of moderate activities you can do, like moving
a table, carrying groceries or bowling. (CIRCLE ONE)

LIMITED FOR MORE LIMITED FOR 3 NOT LIMITED
THAN 3 MONTHS MONTHS OR LESS AT ALL
25. Walking uphill or climbing a few flights of stairs. (CIRCLE ONE)
LIMITED FOR MORE LIMITED FOR 3 NOT LIMITED
THAN 3 MONTHS MONTHS OR LESS AT ALL
26. Bending, lifting or stOOping (CIRCLE ONE)
LIMITED FOR MORE LIMITED FOR 3 NOT LIMITED
THAN 3 MONTHS MONTHS OR LESS AT ALL
27. Walking one block. (CIRCLE ONE)
LIMITED FOR MORE LIMITED FOR 3 NOT LIMITED
THAN 3 MONTHS MONTHS OR LESS AT ALL
28. Eating, dressing, bathing, or using the toilet. (CIRCLE ONE)
LIMITED FOR MORE LIMITED FOR 3 NOT LIMITED
THAN 3 MONTHS MONTHS OR LESS AT ALL

'29. Does your health keep you from working at a job, doing work around
the house, or going to school? (CHECK ONE)
Yes, for more than 3 months (1)
Yes, for 3 months or less (2)
NO (3)

 

30. Have you been unable to do certain kinds of work, housework, or
school work because Of your health? (CHECK ONE)

Yes, for more than 3 months (1)

Yes, for 3 months or less (2)

NO (3)

 

31. How much bodily pain have you had during the past 4 weeks? (CIRCLE
ONE)
NONE VERY MILD MILD MODERATE SEVERE

32. How much Of the time, during the past 3 months, has your health
limited your social activities (like visiting friends or close

relatives)? (CIRCLE ONE)
ALL OF SOME OF A GOOD BIT A LITTLE OF MOST OF
THE TIME THE TIME OF THE TIME THE TIME THE TIME
38. I am somewhat ill. (CIRCLE ONE)
DEFINITELY MOSTLY NOT MOSTLY DEFINITELY
TRUE TRUE SURE FALSE FALSE

73

39.

40.

41.

I am as healthy as anybody I know. (CIRCLE ONE)

DEFINITELY MOSTLY NOT
TRUE TRUE SURE

My health is excellent. (CIRCLE
DEFINITELY MOSTLY NOT
TRUE TRUE SURE

I have been feeling bad lately.
DEFINITELY MOSTLY NOT
TRUE TRUE SURE

MOSTLY DEFINITELY
FALSE FALSE

ONE)

MOSTLY DEFINITELY
FALSE FALSE
(CIRCLE ONE)

MOSTLY DEFINITELY
FALSE FALSE

74

APPENDIX D

CENTER OF EPIDEMIOLOGIC STUDIES - DEPRESSION SCALE (CES-D)

APPENDIX D

CENTER OF EPIDEMIOLOGIC STUDIES - DEPRESSION SCALE (CES-D)

These next questions are about how you feel, and how things have been

with you within the past month.

For each question, read the statement then Check the one answer that
feeling during the

comes closest to the way you have been

DURING THE PAST TIME, HOW MUCH
OF THE TIME . . .

l. were you bothered by things
that usually don‘t bother
you?

2. have you not felt like
eating; had a poor
appetite?

3. have you felt that you
could not shake off the
blues, even with the help
from family or friends?

4. have you felt that you were
just as good as other
people?

5. have you had trouble
keeping your mind on what
you were doing?

6. have you felt depressed?

1. have you that everything
you did was an effort?

8. have you felt hopeful about
the future?

9. have you thought your life
has been a failure?

10. have you felt tearful?

75

past month.

 

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mm

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DURING THE PAST TIME, HOW MUCH
OF THE TIME . . .

11.

12.
13.

14.
15.
16.
17.
18.
19.

20.

has your sleep been
restless?

were you happy?

have you talked less than
usual?

have you felt lonely?

were people unfriendly?
have you enjoyed life?
have you had crying spells?
have you felt sad?

have felt that people
disliked you?

could you not get “going?“

76

 

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mm

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APPENDIX E

RELATIVE COMPETENCY RATINGS BY ACTIVITY (ZSCORE)

APPENDIX E
RELATIVE COMPETENCY RATINGS BY ACTIVITY (ZSCORE)
ZE3 ZSCORE: HOW CONFIDENT FEEL-CATHETER?

Valid Cum
Value Frequency Percent Percent

-1.05409 4 1.6 1.6
.00000 240 96.4 96.4
.84327 5 2.0 2.0
Total 249 100.0 100.0

Valid cases 249 Missing cases 0

2E9 ZSCORE: HOW CONFIDENT FEEL-OXYGEN?
Valid Cum
Value Frequency Percent Percent Percent

-1.59545 6 2.4 2.4 2.4
.00000 227 91.2 91.2 93.6
.59829 16 6.4 6.4 100.0
Total 249 100.0 100.0
Valid cases 249 Missing cases 0

ZE21 ZSCORE: HOW CONFIDENT FEEL-IV MEDS?

Valid Cum
Value Frequency Percent Percent Percent
, -2.04124 1 .4 .4 .4
0.00000 243 97.6 97.6 98.0
0.40825 5 2.0 2.0 100.0
Total 249 100.0 100.0
Valid cases 249 Missing cases 0

ZE33 ZSCORE: HOW CONFIDENT FEEL-INJECT?

Valid Cum
Value Frequency Percent Percent Percent
-2.29967 4 1.6 1.6 1.6
0.00000 223 89.6 89.6 91.2
0.41812 22 8.8 8.8 100.0
Total 249 100.0 100.0
Valid cases 249 Missing cases 0

77

ZE39 ZSCORE: HOW CONFIDENT FEEL-EXERCISES?

Valid Cum
Value Frequency Percent Percent Percent
-3.62820 1 .4 .4 .4
-2.12687 4 1.6 1.6 2.0
-.62555 31 12.4 12.4 14.5
.00000 177 71.1 71.1 85.5
.87577 36 14.5 14.5 100.0
Total 249 100.0 100.0
Valid cases 249 Missing cases 0

ZE45 ZSCORE: HOW CONFIDENT FEEL-BEDSORES?

Valid Cum
Value Frequency Percent Percent Percent
-1.78655 2 .8 .8 .8
-.52546 3 1.2 1.2 2.0
.00000 237 95.2 95.2 97.2
.73564 7 2.8 2.8 100.0
Total 249 100.0 100.0
Valid cases 249 Missing cases 0

ZE51 ZSCORE: HOW CONFIDENT YOU FEEL-SKIN PRO

Valid Cum
Value Frequency Percent Percent Percent
-5.04454 1 .4 .4 .4
-1.40950 8 3.2 3.2 3.6
.00000 200 80.3 80.3 83.9
.40801 40 16.1 16.1 100.0
Total 249 100.0 100.0
Valid cases 249 Missing cases 0

ZE57 ZSCORE: HOW CONFIDENT FEEL-COLOSTOMY?
Valid Cum
Value Frequency Percent Percent Percent

-1.43427 1 .4 .4 .4

-.23905 2 .8 .8 1.2
.00000 244 98.0 98.0 99.2
.95618 2 .8 .8 100.0

Total 249 100.0 100.0

Valid cases 249 Missing cases 0

78

ZE63 ZSCORE:

HOW CONFIDENT FEEL-POST OP INCI

Valid Cum
Value Frequency Percent Percent Percent
-3.44825 1 .4 .4 .4 '
-1.46975 7 2.8 2.8 3.2
.00000 214 85.9 85.9 89.2
.50876 27 10.8 10.8 100.0
Total 249 100.0 100.0
Valid cases 249 Missing cases 0

ZE69 ZSCORE:

HOW CONFIDENT FEEL-ORAL MEDS?

Valid Cum
Value Frequency Percent Percent Percent
-7.78131 1 .4 .4 .4
-2.38928 16 6.4 6.4 6.8
.00000 82 32.9 32.9 39.8
.30673 150 60.2 60.2 100.0
Total 249 100.0 100.0
Valid cases 249 Missing cases 0
ZE81 ZSCORE: HOW CONFIDENT FEEL-INCONT-URINE
Valid Cum
Value Frequency Percent Percent Percent
-3.23347 1 .4 .4 .4
-1.34220 7 2.8 2.8 3.2
.00000 218 87.6 87.6 90.8
.54908 23 9.2 9.2 100.0
Total 249 100.0 100.0
Valid cases 249 Missing cases 0
ZE87 ZSCORE: HOW CONFIDENT FEEL/INCONT/STOOL

Value Frequency

-3.60000
-1.60000
.00000
.40000

Total

Valid cases

1

3
224
21

249
249

.4

100.0

Valid Cum
Percent Percent Percent
.4 .4
1.2 1.6
90.0 91.6
8.4 100.0
100.0
0

Missing cases

79

APPENDIX F

UCRIHS APPROVAL

MICHIGAN STATE

UNIVERSITY

 

April 3. I994

TO: Julia V. Jan-cs
A117 Life Sciences

RE- IRE 1: 94-152
mLE: THE EFFECTS OF CUES To AcnON ON THE USE OF FORMAL
COMMUNITY SERVICES BY FAMILY CAREGIVERS OF PHYSICALLY
DEPENDENT ELDERS
REVISION REQUESTED: NIA
CATEGORY: 2—H.l
APPROVAL DATE: Ade 5. I994

TRUnivasityCoun'tteeoanmhlnvolvingHuman Subjects'wCRn-ISheviawofthispmjed
Esconpletc. luphsdtoadviscdntthcdghtsandwdfamofthehumwbjcasapparwbc
sdeqmtelyptotedsdsadnahodstoobuininfamedoonscatamappmpdste. W'.the
UGIHISWthisplojedindudinganytevisionfistedabove.

Renewal: Wmvdisvflidformcalendaryw, beginn'ngwiththeappmval
dateshownabove. Investigatonphnningtooontinueapmjectheyoodoneyat
“mummflfomhndosedvdththeodginflwmam
apmjectismnewed)toseekupdatedcertifiation. Thaeisamxinnnoffwr
“WWpossible. WWWishingtocomapmjea
heyoadtdtimeneedtonfinfititagainhcompletemiem

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Initimioaofthednnge. lfthisisdooeatdaetimeomepleueuscme
mammalian. Tombsanappttweqpmtooolatanyothatinedun'ngthe
rat. and yourvm'tten tout-cs to the UCRIHS Chair. requesting raised won!
dufuencingtlnpmjcct'isBlandtidcf Indudcinywwadesuiptioo
ofbechngcandmynvisedinstmmmoonsent {maximum

 

RESEARCH -
”I” Problems!
GRADUATE Changes: we as: of the following arise dating the came of the mark. 'wazstigators
SWUIES Inst notify UCRIHS ptoumtly: (I) pmblans (unexpected side effwts. complaints.
WW0: an)involvinghumnwbjectso:(2)dmgaisthemmh envimmentornmw
mm Windham; graterrisk tothehunun subjects than aistedwhcn the
mat“; plutoool was pneviously reviewed and approved.
gum-oat 93mm "we can he of any future help. plus: do not hesitate to contact us at (5 I7) 355-2l800t FAX (5”)
“MW 336-! I‘ll.
4882+“
summon . Sawfly.

    
   
 

As .1 é" ‘ .
‘DaVid'E. Wright. “L '
UCRIHS Chair

 

DEW:ijn

talcum cc: DI. Manfred StommeI
WWW

80

APPENDIX G

CONSENT FORMS

(patient) MSU FAMILY CARE STUDY
CONSENT FORM

The study in which we are asking you to participate is designed to learn more about the ways in which
caring for an elderly family member affects the person providing the care.

Over the next 18 months, 650 caregivers will be interviewed five (5) times over the telephone by a
member of the MSU Family Caregiver Study research staff. They will be asked questions regarding
changes in your health and issues on your insurance coverage and your health status. If you are willing
to participate in this study please read and Sign the following statement.

1. I have freely consented to take part in a study of family caregivers conducted by the College of
Nursing and the Department of Family Practice, College of Human Medicine, at Michigan
State University.

2. The study has been described and explained to me and I understand what my participation will

involve.
3. I understand my participation in this study is voluntary, will involve no cost to me, and that

my decision will in no way affect my current or future health care.

4. I understand that I may withdraw from participation at any time without penalty to me by
calling 1-800—654-8219. My withdrawal would not preclude continued participation by my
caregiver.

5. I understand that the results Of this study will be treated in strict confidence and, should they

be published, my name will remain anonymous. I understand that within these restrictions,
results can, upon request, be made available to me.

6. I understand that no immediate benefits will result from my taking part in this study, but am
aware that my responses may add to the understanding of health care professionals and may
influence future family care. '

7. I understand that I have the right to seek further information about this study, and my right
relating to it, by calling the research office (517)355-1851 or toll free, 1-800—654-8219.

8. I understand that a member of the research staff may need to review part of my current
medical record to obtain a list of my current medical diagnoses/problems. I consent to allow
access to the hospital discharge planning documents for information about my home care needs
and services, and understand that this information will remain strictly confidential.

9. I understand that a member of the research staff may wish to inquire about my group health
insurance policy benefits to understand what benefits are available to me and compare these to
what I am presently using. I give my consent for the hospital discharge coordinator to provide
my group insurance(s) policy numbers so the research staff may identify what insurance
benefits I have, with the understanding that they will remain strictly confidential.

 

 

 

I, . state that I understand what is required of me as a participant and
agree to take part in this study.

Patient signature Date

OR

Guardian/Family member Witness

 

 

83

‘IIIIIIIImain“