, .1;
, 3..

‘2 .
fur.

, . ; »
Efflfiru
. .3 t.
L55:
4 v. .i

HARE

,0?

r: J. .
a; A x ~.. V ‘ ‘ . .. ..
a...” u .i . , ‘ niivzzi.

... V . . . , , vlvtuhx. 71...! .v

if: .V
t. a... u.

a; . .4! t...
0.20?! .I I
. 1!! .D

ytl...
2 “‘31!
,i. I

15. n. )
unilfiitl

as: I 15-:
:1! 11.4.2‘!

13...;
3.». v. ~|....v.»§. .1. .x. t
a. y 33‘

Ann "an. n cum?

y-v-‘onnm.

 

:\

)3}. \(A
It (.

‘3'“!“1”;

”0“”

J . 1.3..» a
u

. . ‘ ; . ‘ ‘ ,. ‘ . ......r.r4..,.

 

 

 

Jlillllilll’illllllllllllllllll'lllliill L

3 1293 01411 1490

This is to certify that the

thesis entitled

WHAT IS THE PERCEIVED IMPACT OF CAREGIVING ON
CAREGIVERS OF AN INDIVIDUAL
WHO HAS HAD A STROKE?

presented by

Denise M. Soltow

has been accepted towards fulfillment
of the requirements for

 

Master of Science degree in Nursing

 

 

/ Major professor

Date X/é-IQD’
l T

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

 

 

 

LIERARY 7-
Michigan State
University

 

 

 

PLACE N RETURN BOX to romovo this checkout from your rocord.
To AVOID FINES Mum on or button duo duo.

DATE DUE DATE DUE DATE DUE

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

WM!

WHAT IS THE PERCEIVED IMPACT OF CAREGIVING ON
CAREGIVERS OF AN INDIVIDUAL
WHO HAS HAD A STROKE?

BY
Denise M. Soltow

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

MASTER OF SCIENCE IN NURSING

College of Nursing

1995

ABSTRACT
WHAT IS THE PERCEIVED IMPACT OF CAREGIVING

ON CAREGIVERS OF AN
INDIVIDUAL WHO HAS HAD A STROKE?

BY

Denise M. Soltow

This descriptive study, based on secondary analysis,
utilized a sample of 42 caregivers of an individual who has
had a stroke to examine the perceived psychosocial and
physical impact of caregiving. Subscales from the Caregiver
Reaction Assessment were utilized to measure the perceived
impact of caregiving. Data was collected three months after
discharge from the hospital. Findings revealed caregivers
perceive an impact on their psychosocial health. This
impact is perceived as a positive reaction on their esteem
and a negative reaction on their schedule. The findings
also indicated caregivers who live with the care recipient
and who care for an individual who is dependent in three or
more ADLS and IADLS experience a higher impact on their
schedule. The caregivers in this study did not perceive an
impact on their physical health. Limitations of the study,
recommendations for future research, and implications for

the advanced practice nurse are discussed.

To my Family, who, through their
love and support

I was able to reach my goal

iii

ACKNOWLEDGMENTS

Thank you to Dr. Barbara Given, my committee
chairperson, for providing me time in her busy schedule,
giving appropriate feedback and encouragement, and for being
a mentor. Thank you to the other committee members, Dr.
Sharon King and Dr. Carla Barnes, for also providing me with
words of encouragement and positive feedback.

Thank you also to my sisters, Deborah and Dianna, for
through their strengths, which are my weaknesses, I was able

to complete this project and reach my goal.

iv

TABLE OF CONTENTS

List of Tables . . . . . . . . . . . .
List of Figures . . . . . . . . . . . .

I. INTRODUCTION . . . . . . . . . .
Research Question . . . . . . .

II. CONCEPTUAL FRAMEWORK . . . . . .

III. CONCEPTUAL DEFINITION OF VARIABLES

IV. REVIEW OF LITERATURE . . . . . .

V. METHOD . . . . . . . . . . . . .
Design . . . . . . . . . . . .
Sample & Data Collection . . . .
Instrumentation . . . . . . .

Operational Definitions of Variables

Data Analysis . . . . . . . . .
Protection of Human Subjects . .

VI. RESULTS . . . . . . . . . . . .
Demographic Variables . . . . .
Research Question . . . . . . .
Incidental Findings . . . . . .

VII. DISCUSSION . . . . . . . . . . .
Limitations and Assumptions .
Implications for Future Research

Implications for Advanced Nursing Practice

Summary . . . . . . . . . . . .

References 0 O O O O I O O O O O O O 0

APPENDIX A: Eligibility Criteria; Original Study

APPENDIX B: Self Administered Booklet

APPENDIX C: Consents and Approval Letters

vi

vii

22
22
22
23
25
27
27

28
28
32
33

36
39
4O
43
50

51
55

56
60

Table
TABLE

TABLE

TABLE

TABLE

TABLE

TABLE

TABLE

TABLE

TABLE

8:

LIST OF TABLES

Page
Breakdown of Questions by Subscale . . . . . . . 26

Frequency and percentage of caregivers
described by sex and relationship to patient . . 29

Frequency and percent of caregivers by age and

marital status . . . . . . . . . . . . . . . . . 29
Frequency and percent of caregivers by
employment status and income . . . . . . . . . . 30

Hours of care provided by the caregiver by
number and percentage of caregivers . . . . . . 31

Selected patient demographics by number and
percentage . . . . . . . . . . . . . . . . . . . 31

Dependency in number of ADLS and IADLS by number
and percent of patients and caregiver rating of
the patients health status . . . . . . . . . . . 32

Number and percentage of caregivers according to
scores on CRA subscales: Caregiver esteem, Impact
on Schedule and Impact of Health . . . . . . . . 34

Comparison of type of caregiver by mean score
for subcategories of CRA . . . . . . . . . . . . 35

vi

Figure

FIG 1:

LIST OF FIGURES

Conceptual Model . . . . . .

vii

INTRODUCTION

Over the past decade the concept of caregiver burden
has been the basis of numerous articles and studies (Berry,
Zarit & Rabatin, 1991; Covensky et al., 1994; Barush &
Spaid, 1989; Given, King, Collins & Given, 1988; Pruchno &
Resch, 1989). Many of these studies have specifically
examined the impact or effects of caregiver burden on
caregivers of Alzheimers and Cancer patients, while others
have utilized mixed samples. Few studies have looked
specifically at caregiver burden in relation to caring for
an individual suffering from the effects of a stroke
(Draper, Poulos, Cole, Poulos & Ehrlich, 1992; Wade, Legh-
Smith & Hewer, 1986; Schulz, Tompkins & Rau, 1988; Davis &
Grant, 1994). This study identifies the perceived impact on
the family caregiver for an individual who has suffered a
stroke.

Family caregiving has increased over the past decade
due to an increase in the age of the population associated
with the risk of chronic illness (Abraham & Berry, 1992;
Malonebeach & Zarit, 1991). Family caregivers can be male,
female, spouses, adult children, sisters or brothers.
Spouses provide the majority of homecare followed by adult
children (Given & Given, 1991; Malonbeach & Zarit, 1991;
Abraham & Berry, 1992). Family caregivers are subject to

demands on their physical health, social life and financial

2
resources (Evans, Bishop & Ousley, 1992; Gaynor, 1990;
Abraham & Berry, 1992; Wright, Clipp & George, 1993).

Due to an increase in survival rates for individuals
who have had a stroke (Noll-Roth, 1994) and shortened
hospital stays (Davis a Grant, 1994) more family caregivers
are providing home care for these individuals. Stroke is
the third leading cause of death and disability in the
United States (Schulz et al., 1988; Davis & Grant, 1994),
and is the most common cause of chronic neurological
disability in the adult population (Hickey, 1992).
Approximately one million individuals survive a stroke with
disability each year (Hickey, 1992). A stroke occurs
suddenly and produces long lasting effects, resulting
sequelae may be physical, cognitive and/or emotional
(Tompkins, Schulz & Rau, 1988). Disabilities, caused by a
stroke, can include hemiplegia, aphasia, sensory/perceptual
deficits and behavioral problems (Stroker, 1983). Sillman,
Wagner and Fletcher (1987), reported one-fourth to one-third
of all individuals who have had a stroke experience
persistent dependency in one or more activities of daily
living (ADL) six months post stroke, and one-half of elderly
stroke patients suffer permanent loss of function.
Statistics show 40% of patients who survive six months post
stroke will require help with one or more ADL's such as
bathing, dressing, feeding and mobility (Wade, 1992).

An individual who has had a stroke can remain at home

for months or years, causing financial stress and loss of

3
social life for the caregiver (Wade et al., 1986). Homecare
produces physical stressors on the caregiver from such
activities as lifting and transferring, as well as mental
stressors caused by sudden changes in life style
(Braithwaite & McGown, 1993). Negative aspects of
caregiving for stroke survivors reported by Silliman et al.
(1987), stemmed from changes that caregiving had made in the
caregivers lifestyle. These changes occurred as'a result of
changes in the patients' personality, behavior and cognitive
functioning and physical limitations. Evans, Leith-Matlock,
Bishop, Stranahan & Pederson (1988) reported that family
dysfunction can result directly or indirectly from stroke
related problems with disruption occurring in usual coping
mechanisms, communication patterns and social roles.
Because of these disruptions, emotional disorders
characterized by anxiety, depression and fatigue are common
among caregivers of stroke and dementia patients (Draper et
al., 1992).

As previously stated, there are approximately one
million individuals who survive a stroke with a disability
each year (Hickey, 1992). Many of these individuals will
remain in their homes or reside with a family member,
requiring the family member to assume all or part of their
care needs. By studying the impact of perceived burden, in
relation to caregivers of an individual who has had a
stroke, nursing interventions can be developed that decrease

the amount of burden perceived and experienced. The

4
advanced practice nurse (APN) as well as other health care
providers need to know what effects a stroke has on the
primary caregiver, in order for appropriate interventions to
be developed. The purpose of this study is to describe the
psychosocial, and physical impact of caring for an
individual who has had a stroke on the family caregiver.

Research Question

What is the perceived impact of caregiving
(psychosocial and physical) experienced by family caregivers
of individuals who have had a stroke? A

CONCEPTUAL FRAMEWORK

An adaptation of the basic stress coping framework (XYZ
Model) is utilized to describe the effects of caring for an
individual who has had a stroke, as perceived by the
caregiver. This model has three primary elements, potential
activator(s) (X), a reaction (Y), and the consequences or
responses to the reactions (Z) (Beigel, Sales & Schulz,
1991). Potential activators are events that change an
individual's current state or lifestyle. Reactions are
considered responses to the activator and may be intense
enough to produce consequences. Reactions are usually
biological or psychosocial. Consequences are considered to
be the cumulative effects from the reaction (Biegel et al.,
1991).

The potential activator (x) in this study occurs when
an individual has a stroke, and requires homecare. This

occurrence produces a reaction, that of taking on the

.uxonuu e aufls Hoauabwvcw an no“ DHDH Hobwmeuoo on» no mcflxeu saga Donavoum
one pea» «avenue on» mnwueuflvcw .uuoooum ucwbfimouou on» no demos Houumuucou «H «Human

 

 

space: so uuomafle
Hmuamsnmu

manpocuu co pummawe
avenue He>flwouuue

 

 

 

 

 

Hewuouonuhuml
mcflbfimmuau DHDH Hmbwmunmo oxouuu a no pouco
mo uuemEH can no no mcwxma nuwa HenuwbwvcH

 

 

 

 

 

 

 

6
caregiver role (Y). The effects of this reaction are seen
in the consequences (2). Consequences are the perceived
effects that the caregiver role has on the caregivers’
physical and psychosocial health.
CONCEPTUAL DEFINITION OF VARIABLES
W

The term caregiver burden has been used in many studies
to describe the effects of caregiving on the care provider.
Dillehay and Sandys (1990) defined burden as a psychological
state. The combination of physical work, emotional
pressure, social constraints, and financial demands
resulting from caregiving requirements produces the
psychological state of burden. Beigel, Sales, and Schultz
(1991) describe burden as a subjective state reflecting the
perceptions of individual caregivers.

Montgomery, Gonyea, & Hooyman (1985) distinguish
between objective and subjective burden this way - objective
burden reflects disruptions or changes in the caregivers'
life, while subjective burden reflects the caregivers'
attitudes and/or emotional reactions toward the caregiving
experience. Objective burden is reflected in changes to
personal freedom, amount of privacy and time caregivers had
for themselves.

Given & Given (1991), defined burden as a
biopsychosocial reaction that results from an imbalance of
demands, relative to available resources. Given, et al.

(1988) earlier defined burden as reactions to caregiving.

7
These reactions are the individuals perceptions of caring
for an individual, including the impact on their schedule,
finances and health that result from an imbalance of demands
on available resources. Given & Given (1995) further
refined their definition of caregiver burden to state that
caregiver burden "is a multidimensional biopsychosocial
reaction resulting from an imbalance of care demands and
requirements relative to physical, social, emotional, and
financial resources available to the individual providing
care and support to a family member" (p. 7).

For the purpose of this study, caregiver burden is
defined as an individuals perception of the psychosocial and
physical impact that caregiving has produced. The aspects
of psychosocial and physical will be further defined in the
following sections.

W

The psychosocial impact of caregiving can be seen as
caregivers' decrease personal time, social activities and
hours at work in response to the caregiving role. Some
caregivers may resign from their jobs due to the demands of
caregiving. Psychosocial effects can also be seen as
caregivers expressed feelings of frustration, guilt and/or
anger which develop in relation to their caregiving role.

Grafstrom, Norberg and Hagberg (1993) cited that
limitations on social and personal activities are frequently
reported when an individual assumes care for a frail elderly

relative. Yaffe (1988), Stoller (1983), George and Gwyther

8
(1986) and Killeen (1990) have reported caregivers suffer a
negative impact on their social life as a result of
caregiving.

Impacts on employment status have also been reported.
Barnes, Given and Given (1995) reported employed daughters
have conflict with their roles, and approximately 12-21% of
daughters will terminate employment, and approximately 11%
of all caregivers will quit work in order to provide care
for an elder (Stone, Cafferta & Sargl, 1987). Feelings of
frustration, guilt, anger, resentment and family strain have
been reported as a result of the competing demands of
family, job and caregiving (Pett, Caserta, Hutton & Lund,
1988).

As cited above, one can see how caregiving can have
varying psychosocial effects on the caregiver. The effects
can be seen as changes in employment status, personal time,
and amount of time spent with others. The dimensions of
psychosocial impact, for the purpose of this study is
defined as the perceived impact on the caregivers' social
life, employment status, daily schedule and on their self
esteem.

5' act

The physical impact of caregiving on caregivers has
been reported in several studies (Given et al., 1988;
Gaynor, 1990; Killeen, 1990; Young & Kahana, 1989). Killeen
(1990) reported that the most frequently mentioned physical

problems associated with caregiving by caregivers were

9
hypertension and an increase in frequency of illnesses.
Other physical problems mentioned were intestinal
irritability, weight loss or gain, an increase in cigarette
use and arthritis. Gaynor (1990) and Given et al. (1988)
mentioned complaints of arthritis and hypertension in
relation to caregiving. Young and Kahana (1989) reported
fatigue and health deterioration as physical effects of
caregiving.

The physical impact of caregiving is perceived by many
caregivers, as evidenced by complaints of physical
illnesses, such as, arthritis and hypertension or as
complaints of fatigue or the increase in frequency of
illnesses. For the purpose of this study it is this
perceived physical effect that will be addressed. The
physical impact of caregiving is defined as the individuals
perception of the impact caregiving has had on their
physical health.

REVIEW OF LITERATURE

Studies over the past decade conducted on family
caregivers have shown that caregivers experience effects on
their personal and social life, physical and mental health,
and financial resources (Sayles-Cross, 1993; Ballie, Norbeck
& Barnes, 1988; Gaynor, 1990; & Covinsky et al., 1994).
However, none of these studies have looked specifically at
caregivers of an individual who has had a stroke. As the
incidence of individuals who survive a stroke increases,

there develops a need to study the effect caregiving has on

10
caregivers of this population. Recently, a few studies have
been published that address caregiving in relation to
individuals who have had a stroke (Brandriet, Lyons &
Bently, 1994; Davis & Grant, 1994; Stroker, 1983; Draper et
al., 1992; Schulz, Tompkins & Rau, 1988). The following
sections review pertinent literature found on family
caregivers and caregivers of stroke patients in relation to
caregiver burden. The studies reviewed address both the
psychosocial and physical impact of caregiving.
m' re 'ver

Clipp & George (1990) investigated the needs of
caregivers in relation to patterns of social support. In a
Duke University Family Support Program 510 family caregivers
were surveyed in two phases, one year apart, using a
questionnaire which addressed social support, predictors of
social support, economic resources, physical and mental
health, social and recreational activities and
characteristics of the caregiving context. Reliability and
validity of the tool was not reported. Findings in this
study indicated caregivers who provide full time care have
the greatest need for support. In addition, caregivers with
the least amount of support, the oldest in the sample, came
from larger households and were supported by the lowest
incomes. These caregivers admitted to more symptoms of
stress and received the least amount of assistance as
compared to others caregivers in the sample. However, these

caregivers perceived their financial security as good.

11

Ballie et al. (1988) looked at the effects of perceived
caregiver stress and social support on the psychological
distress of family caregivers. The sample for this study
consisted of 87 family caregivers who provided care in their
own home or in the elders home without pay. The
investigators found the variables of mental condition,
levels of functioning, hours of care needed and total years
of caregiving contributed to the caregivers perceived
stress. The perceived stress of caregiving was measured by
a sixteen item, Likert type questionnaire developed for
their study. The standardized alpha test for internal
consistency reliability for the study sample was .90.
Caregivers who had low social support and had been providing
care for an extended time period were at higher risk for
psychological distress and/or depression.

Sayles-Cross (1993) looked into perceptions of family
caregivers and found that the more caregivers held back from
what they wanted to do most, the more disgusted and angry
they felt. Caregivers perceived caregiving as a threat to
their self esteem, health and well-being, and coped with
their caregiver role by decreasing the amount of time spent
on personal activities. Sayles-Cross (1993) utilized five
self-reported instruments in collecting data, the Age Social
distance Scale (alpha .83), the What's at Stake Scale (alpha
.80 - .82), the Emotions Scale (alpha .85 - .86), the Cost
of Care index (alpha .92) and a research designed

demographic inventory. The sample consisted of 139 non-paid

12
familial caregivers in which the majority where adult child
and spouse caregivers.

Abraham and Berry (1992) investigated the needs of
family caregivers. The sample consisted of 40 family
caregivers who were interviewed in their home using a
questionnaire developed for the study. The reliability and
validity for this tool was not reported. In this study 44%
of the caregivers gave an extra three hours or more daily,
beyond their daily routines, in delivering care to a
relative. This extra time restricted their personal freedom
and impacted on their daily schedule requiring them to
rearrange their schedule in order to meet the needs of the
care recipient.

Similar to the studies by Sayles-Cross (1993) and
Abraham and Berry (1992), Killeen (1990) found caregivers
felt anger and resentment toward their caregiving role. The
more the caregivers personal or free time decreased, the
more the amount of perceived stress increased. In addition,
Killeen's (1990) study of 126 family caregivers who provided
care in the home for a frail elder 65 years of age or older
revealed younger caregivers were more likely to experience
more stress in their roles than older caregivers. The
perceived Stress Scale (Cronbach’s alpha .84), the Jalowiec
Coping Scale (Cronbach’s alpha .72) and the Current Health
Scale (Cronbach's alpha .92) were used to measure the
variables within this study. In relation to the impact on

physical health, Killeen (1990) reported caregivers tended

13
to perceive their own health as less positive. The most
frequently identified physical problems were high blood
pressure and an increase in frequency of illnesses. Other
problems identified were cancer, intestinal irritability,
arthritis, weight loss or gain, and an increase in
cigarettes smoked.

Gaynor (1990) found the most common illness mentioned
by caregivers to be arthritis and hypertension. Gaynor
(1990) studied the patterns of illness symptoms in elderly
female caregivers and the relationship of those symptoms to
age and caregiving role. A convenience sample of elderly
women who were either long-term, short-term or noncaregivers
was utilized. Long-term caregivers cared for husbands with
disabling neurological illness e.g. Parkinsons, Multiple
Sclerosis, etc. Short-term caregivers had husbands who had
a transurethral prostectatomy for a nonmalignant condition
within the past 12 months prior to the study. The Zarit
Burden Scale, to assess the subjective feelings of health,
psychological well being, financial and social status and
the nature of the relationship between the caregiver and the
care recipient, and also the Structural Model of Self-
Reported Physical Health scale was used to measure the
subjective ratings of the caregivers own health. Gaynor
(1990) found no difference between the three groups of
caregivers in relation to the amount of medication taken,
ill days and caregiver hospitalized days. This study did

find women younger than 54 years of age experienced higher

14
feelings of burden, however, this group of women had
performed in their role as caregiver for a longer period of
time.

Baumgarten, Battista, Infante-Rivard, Hanley, Becker
and Gauthier (1992) studied 125 demented patient caregiver
dyads compared with 115 cataract patients (non caregivers)
to determine whether there is an excess of psychological and
physical health problems among family caregivers of elderly
persons with dementia. Tools utilized by these
investigators were the Center of Epidemiologic Studies
Depression (CESD) scale, the Aday and Andersen's checklist
used to quantify physical symptoms, a checklist from the
Older Americans Research and Services questionnaire, Olson
and colleagues inventory of family coping strategies,
Cutrona and Russel’s Social Provisions Scale and the
Louisville Older Person Events Scale. Results indicated
that the caregivers had lower levels of well-being on all
measures of psychological and physical health status. The
most common physical symptoms reported by caregivers were
persistent cough, persistent fatigue, chest pain, headache
and morning fatigue. Caregivers who reported the highest
levels of depression and physical symptoms cared for
individuals who had greater degrees of functional impairment
and behavioral disturbances.

The financial impact of caregiving was the basis of a
study by Covinsky et al. (1994). The purpose of this study

was to examine the impact of illness on the families of

15
seriously ill adults and to determine the correlates of
adverse economic impact. The sample consisted of 2661
seriously ill patients who survived their initial
hospitalization and were discharged home. The family was
interviewed about the impact of the patients illness on the
family members. Questions about both the financial impact
of the illness and the caregiving burden for family members
were administered at two and six months following hospital
discharge. Covinsky et a1. (1994) found families needed to
make major life changes and were unable to function normally
because of the stress of the care recipients illness.
Thirty-one percent of the families reported losing most of
their savings, while 29% reported losing their major source
of income. The costs of the illness required 17% of the
families to change their personal plans.

Differences in burden experienced by spousal caregivers
and adult child caregivers have been reported. Given et al.
(1988) using the Caregiver Reaction Assessment (alpha
coefficients .66-.89), studied 87 family caregivers who were
providing care for persons over the age of 60. Findings
indicated that adult child caregivers expressed less
positive reactions and perceived a greater impact on their
health then spouse caregivers. The most common reported
health problems were heart disease, hypertension and
arthritis. Caregivers in this study reported they devoted

an average of fifteen hours per day toward caregiving

16
activities and that they performed these activities with
little assistance.

Young and Kahana (1988) compared spouse and non-spousal
caregivers, using an instrument that was constructed from
several validated measures. These were the Symptom
Checklist (Cronbachs alpha .94), Multilevel Assessment
Inventory (Cronbachs alpha .93 and .74), Burden Inventory ,
(Cronbachs alpha .94), and the Social Support Index
(Cronbachs alpha .84 and .61). Findings indicated daughters
perceived a significantly greater negative impact and were
more likely to report they had experienced a deterioration
in their health as a result of providing care. Daughters
reported higher burden scores and higher scores representing
a decline in physical health than did the wives and
husbands. The sample for this study was comprised from 183
older patient-caregiver dyads, 63% were spouses and 52% of
the non-spouse caregivers were children.

The effects that caregiving has on a family caregivers
psychosocial and physical health, as well as finances, is
evident in current literature. The literature indicates
caregivers report an increase in physical illness (i.e.
hypertension) and/or a decline in their perceived physical
health. It is also known that caregivers feel an impact on
their schedules causing them to decrease their personal time
and/or decrease their hours at work in order to meet the
demands of caregiving. What is not known is whether

caregivers of stroke patients experience and perceive the

17

impact of burden the same as caregivers of groups with other
illnesses and disabilities. In summary the studies reviewed
have failed to address the population of caregivers for an
individual who has had a stroke. This population needs to
be addressed separately in order to determine if the effects
are the same or different from caregivers of individuals
with alzheimers and/or cancer. In the following section the
literature reviewed is specific to stroke caregivers.

Family Caregivers of an Individual who has had a Stroke

Caregiver studies on caregivers of an individual who
has had a stroke are very limited. Some investigators have
examined the effects on the caregiver of a stroke survivor
in relation to the termination of home care services
(Brandriet, Lyons & Bentley, 1994; Mclean, Roper-Hall, Mayer
& Main, 1991). Few researchers have addressed the impact of
caregiving on caregivers of an individual who has had a
stroke (Stroker, 1983; Wade, Legh Smith, Langton-Hewer,
1986; Draper et al., 1992; Davis & Grant, 1994). These
researchers address the psychosocial and physical impact on
the caregiver, however, none of them attEmpt to address the
caregivers perception of the effects caregiving has had on
their lives.

A pilot study by McLean, Roper-Hall, Mayer, and Main
(1991) looked at the service needs of post stroke care
recipients and their family caregivers. The sample for this
study consisted of 20 post stroke care recipient/caregiver

dyads who were assessed using the Clifton Assessment

18
Procedure for the Elderly. This tool was used as an
objective measurement of the disability of the stroke care
recipient. Anxiety and depression was measured using the
Hospital Anxiety and Depression Scale. Mclean et al. (1991)
found that the caregivers needs resulted from their
inability to meet the basic care needs of the care
recipient. This was due to the caregivers lack of
information or ability to perform certain care tasks.
Mclean et al. (1991) also found caregivers perceived that
their physical health was adversely affected. Sleep was
often interrupted by caring needs resulting in fatigue.
Other physical complaints made by caregivers were backache
and weight loss. All caregivers reported weeping at times
and the feeling of being tied down was reported by seven of
the caregivers.

Brandiet et al. (1994) studied the unmet needs,
biopsychosocial problems and strategies for coping as
perceived by elders following the termination of skilled
home care services. A convenience sample of 20 subjects who
had been diagnosed with a stroke were utilized. A
semistructured interview using questions developed by the
investigators was used to gather data. Many of the
caregivers became overwhelmed with the skill, time and
intensity needed for the provision of care. They identified
unmet needs in relation to household tasks, lack of
finances, nutrition and safety. Frustration was reported by

both caregivers and stroke care recipients. This

19

frustration resulted from physical and cognitive deficits in
mobility, speech, memory, reading, thinking and decision
making skills.

Evans, Bishop, and Haselkorn (1991) in their study of
135 stroke patients and their families found four variables
that when combined helped to predict satisfactory homecare
for the stroke patient. The variables are, 1) caregiver
perception of family function; 2) level of caregiver
depression immediately following the stroke; 3) marital
status; and 4) caregiver knowledge of stroke care
principles. All of these variables contributed to a
successful homecare experience. Families who had
satisfactory home care experiences, one year post stroke,
were less likely to have been depressed initially, were more
knowledgeable about stroke at time of discharge from the
hospital, reported healthy family function and were the
patients spouse. The investigators utilized several
different tools in their study: depression was measured by
the Center for Epidemiologic Studies - Depression scale;
patient cognition was measured with the Cognitive Capacity
Screening Exam; outcomes were measured by the ESCROW
profile; caregiver knowledge of stroke care was measured
with the Stroke Care Information Test; and the Family
Assessment Device measured family functioning. The
reliability and validity for these tools were not reported.

Using a qualitative analysis approach grounded in

social construction theory, Davis and Grant (1994), explored

20
the management strategies of eight family caregivers use to
solve home care problems. Caregivers in this study cited
problems with care activities such as lifting, transferring
and bathing, due to the patients functional losses that
resulted from the stroke. Caregivers also cited
frustrations with the patients cognitive and emotional
losses associated with the stroke. One caregiver stated
"Her thinking is slower...She doesn’t remember a lot of
things...She has to write things down now..." (p. 70).
Caregivers also cited problems with access to services
and/or costs of care. "You see, I need some nurses for 12
hours a day...I need someone part of the night and early in
the morning...I can't lift him..." (p. 70), was reported by
one caregiver. Another caregiver reported "The doctor
recommended rehab, but without insurance we couldn’t afford
it...." (p. 70). Even though this study did not set out to
describe the impact caregiving has on the caregiver, it does
demonstrate some of the physical and financial impacts that,
can occur while caring for a stroke survivor.

Wade et al. (1986) found 25% of caregivers showed signs
of depression one year post stroke. The patients’
disability, caregivers' perception of recovery, patients'
level of depression and their level of activities of daily
living were factors which contributed to the caregivers'
level of depression one year post stroke. At two year post
stroke the investigators could not relate depression to any

measure in the study, however the investigators did not cite

21

if the level of depression experienced by the caregiver
changed from one to two years after taking on the caregiver
role. Wade et al. hypothesized, that caregiver depression
was related more to the occurrence of the stroke rather than
due to the physical stress of caregiving. Depression in
caregivers was measured by the Wakefield Self Assessment
Depression Inventory, and by asking direct questions about
mood changes in relation to their state before the stroke.

In a study comparing 99 caregivers of stroke and
dementia victims the General Health Questionnaire, Relatives
Stress Scale, Behavior and Mood Disturbance Questionnaire,
Barthel Index for Physical Disability, Quality of Life
Questionnaire, Life Satisfaction Questionnaire and Caregiver
Health Scale were used (Draper et al., 1992). Draper et al.
(1992) found caregivers of both types of patients
experienced similar degrees of burden and psychological
morbidity. The majority (80%) of the caregivers in this
study perceived their caregiver role positively and were
satisfied with their current life. The stroke patients in
this study demonstrated a higher level of physical
disability then the dementia patients, while the dementia
patients demonstrated higher levels of psychiatric
disturbances. It should be noted that the investigators
excluded subjects who had a stroke with resulting physical
disability and dementia.

The studies cited in this section have revealed some of

the effects caregivers of stroke patients may experience.

22
The psychosocial effect of depression, the physical effects
of fatigue and weight loss, and the financial effects seen
in the inability to pay for necessary rehabilitation
services have been expressed by caregivers of post stroke
care recipients. Many of the studies have not addressed the
caregivers perceived effects of their role on their
psychosocial and physical health status. These perceived
effects need to be addressed in order for appropriate
interventions to be utilized or developed that specifically
reduce the amount of burden experienced by these caregivers.
METHOD
Design

This is a descriptive study which looks at the
relationship of a known variable (caregiver burden) with an
unknown population (stroke patients) (Brink & Wood, 1988).
The question for this research study was addressed using
secondary analysis of data from the study Caregiver
Responses to Managing Elderly Patients at Home, funded by
the National Institute on Aging (Grant #2, R01 AGO6584-06),
conducted by principal investigator Charles W. Given,
Michigan State University.

Sample and Data Collection

The sample for this study was derived from the sample
utilized in the study of caregivers responses to managing
elderly patients at home. The original study used a
convenience sample, in which 1,238 cases were contacted, and

839 met eligibility. Forty-two of the eligible sample met

23
criteria for this study. Eligibility criteria are: 1) the
individual had to have been classified as having a stroke;
2) have a designated family caregiver assisting them at
home; and 3) meet the eligibility criteria of the original
study (Appendix A). The sample was recruited from 27
hospitals around the state of Michigan, including one in the
Upper Peninsula. Recruitment was done by discharge planners
employed by the hospitals and graduate medical students from
Michigan State University (Pohl, Given & Given, 1991).
Patients and caregivers were screened within two weeks of
discharge, and one intake interview of the primary caregiver
was administered ten days later. A second caregiver
interview was conducted 3 months following the intake
interview. Data was collected by trained telephone
interviewers and from a self administered booklet (SAB) (see
Appendix B) (Darin, Pohl & Given, 1993).
Instrumentation

The Caregiver Reaction Assessment (CRA) assesses the
reactions of family members caring for elderly persons with
physical impairments (Given, Given, Stommel, Collins, King &
Franklin, 1992). This instrument consists of five
subscales, each addressing a specific area of perceived
effects or reactions produced by caregiving. Caregivers
esteem, impact on schedule, impact on health, impact on
finances and lack of family support are the areas addressed
by the CRA. Three subscales are used for this study:

caregiver esteem; impact on schedule; and impact on health.

24
The lack of family support subscale was excluded for it was
felt by the investigator that it measured an external rather
than internal component of burden. Impact on finances
subscale was not utilized for this study due to the lack of
available data. Each subscale is utilizes a five point
Likert-type response, ranging from strongly agree to
strongly disagree (1=strongly disagree, 2=disagree,
3=neither agree or disagree, 4=agree, & 5=strongly agree).

Caregiver esteem and impact on schedule is used to
measure the psychosocial impact of caregiving. Impact on
schedule (Cronbachs alpha .82) has five questions which
address employment, changes in schedule and impact on
changes in visiting with family and friends, and measures
the extent to which caregiving causes interruptions in or
elimination of activities and interferes with relaxation
time (Given et al., 1992). Caregiver esteem (Cronbachs
alpha .90) includes seven items that address the individuals
feelings regarding the care situation and measures how much
caregiving imparts individual self-esteem (Given et al.,
1992).

The impact on health subscale (Cronbachs alpha .80) is
utilized to measure the physical impact of caregiving. This
subscale consists of four items which are used to address
the individuals' perceptions of how their physical strength
and health have been effected by taking on the caregiving

role. This subscale measures the physical capabilities of

25
the caregiver and his/her strength to provide care (Given et
al., 1992).
Operational Definition of Variables

W:

Caregiver burden is defined as an individuals
perception of the psychosocial and physical impact of
caregiving. The aspects of psychosocial and physical impact
will be measured by using questions from the caregiver
reaction assessment (see Table 1 for break down of questions
by subscale). Data for impact on schedule, caregiver esteem
and impact on health will be taken from data collected
during wave 1 of the original study. Scoring will be done
by comparison of means for each subscale.

o :

A stroke is defined as events that follow the blockage
or occlusion of a major vessel(s) in the brain or feeding
the brain. Events can result from partial or complete
obstruction to a major intracranial vessel, an intracerebral
hemorrhage including bleeds that occur from an arteriovenous
malformation (AVM) or an aneurysm (subarachnoid hemorrhage),
(Marshall, Marshall, Vos & Chestnut, 1990). All patients
who were self classified and/or classified by the original
investigators as having a stroke will be utilized. In the
original study diagnoses were classified using the

International Classification of Diseases categories.

26

Table 1: Breakdown of Questions by Subscale

 

1. Impact on schedule

a. I have to stop in the middle of my work or
activities to provide care.

 

 

b. I have eliminated things from my schedule since
caring for .

c. My activities are centered around care for .

d. I visit family and friends less since I have been
caring for .

e. The constant interruptions make it difficult to

find time for relaxation.

 

 

 

 

 

 

2. Caregiver Esteem
a. I feel privileged to care for .
b. I really want to care for .
c. I enjoy caring for .
d. Caring for makes me feel good.
e. I will never be able to do enough caregiving to
repay .
f. Caring for is very important to
me.
3. Impact on Health

a. It takes all my physical strength to care for

 

 

b. I am healthy enough to care for .

c. My health has gotten worse since I've been caring
for .

d. Since caring for , it seems like I’m

 

tired all of the time.

 

27

W

A family caregiver is defined as the individual who
assumes the caregiving role for a relative who has had
mental and/or physical disabilities resulting from a stroke.

Data Analysis

Data analysis was done by using SPSS/PC+. Descriptive
statistics, i.e. frequency, means and percentages were
utilized to determine the individuals perceived
effects of caregiving. Descriptive statistics were used to
answer questions regarding impact on psychosocial health and
physical health. Demographic statistics were utilized to
determine caregiver characteristics at the onset of the
caregiving experience. Characteristics such as age, gender,
relationship to the individual who has had the stroke,
employment, marital status, income and number of hours used
in providing care were utilized. Patient characteristics
that were addressed using demographic data were age, marital
status and the functional ability or physical health of the
individual.

Protection of Human Rights

All methods to protect human rights that were utilized
in the original study were maintained. Anonymity was
maintained due to lack of access to all identifiers. All
subjects had their confidentiality safeguarded through the
assignment of an identification (ID) code number. The

responses of all study participants remained confidential.

28
Signed consents were obtained by the original investigators
(See Appendix C for consents and approval letters).
RESULTS
Demographic Variables

Table 2 describes the caregivers in this study by sex
and relationship to patient. The majority of the caregivers
in this sample were female (n = 36, 85.7%). Spouses
comprised the majority (n = 29, 69%) in regards to family
relationship to the patient.

Table 3 describes the caregiver by age and marital
status. The caregiver mean age was 59.9 years, with a
minimum age of 34 years and a maximum age of 84 years. The
majority of the caregivers were married (n=36, 85.7%) the
remaining caregivers were either single, never married,
divorced or widowed.

Table 4 describes the caregivers in this study
according to employment status and income. The majority of
the caregivers in this sample (n=17, 40.5%) were retired.
The remaining caregivers were either employed full or part-
time, layed off, in between jobs or not employed for pay.
One caregiver, in this sample, had to quit work in order to
provide care. The average income for the caregivers was

$27,236, with a range of $3,000 to $62,500.

29

Table 2: Frequency and percent of caregivers described by
sex and relationship to patient (n=42).

 

 

Variable Number Percent
Sex
Male 6 14.3
Female 36 85.7
Relationship
To Patient
Spouse 29 69.0
Daughter 12 28.6
Granddaughter 1 2.4

 

Table 3: Frequency and percent of caregivers by age and
marital status (n=42)

 

 

Variable Number Percent

Age
39 or < 2 4.8
40 - 49 6 14.3
50 - 59 9 21.5
60 - 69 18 42.8
70 - 79 6 14.3
80 or > 1 2.4

Marital Status
Single, Never Married
Married/Remarried 3
Divorced
Widowed

NNO‘N

 

30

Table 4: Frequency and percent of caregivers by employment
status and income (n=42)

 

Variable Number Percent

 

Employment Status

Fulltime 8 19.0
Parttime 2 4.8
Retired 17 40.5
Layed Off/betw jobs 6 14.3
Not employed for pay 8 19.0
Quit work to care 1 2.1
Income
$9,999 or < 5 14.7
$10,000 - $19,999 14 41.2
$20,000 - $29,999 5 14.7
$30,000 - $39,999 4 11.8
$40,000 - $49,999 3 8.8
$50,000 or > 3 8.8
Missing 4 9.5

 

Table 5 describes the total hours of care provided per
day by the caregiver. Caregivers provided 14.3 mean hours
of care per day, with a range of .00 to 24 hours of care.

Table 6 describes the patient demographic data, age,
sex and marital status. The mean age of the patients is 70,
with a range of 55 to 89. The majority of the patients were
married (n=31), the rest were either widowed, divorced or
separated.

Table 7 describes the functional status of the patient.
Functional status was determined by dependencies in
Activities of Daily Living (ADLS) and Instrumental
Activities of Daily Living (IADLS). ADLS consisted of items

such as dressing, bathing, feeding, and toileting. IADLS

31

Table 5: Hours of care provided by the caregiver by number
and percentage of caregivers.

 

Variable Number Percent

 

Hours of Care

0 - 3 6 14.3
4 - 6 6 14.3
7 - 9 3 7.2
10 - 12 3 .7-2
13 - 15 O 0.0
16 - 18 7 16.7
19 - 21 5 11.9
22 - 24 12 28.6

 

Table 6: Selected patient demographics by number and
percentage (n=42)

 

 

Variable Number Percent
Age
50 - 59 6 14.4
60 - 69 17 40.6
70 - 79 13 31.1
80 - 89 6 14.4
Sex
Male 25 59.5
Female 17 40.5
Marital Status
Married/Remarried 31 73.8
Divorced 1 2.4
Widowed 9 21.4
Separated 1 2.4

 

32

Table 7: Dependency in number of ADLS and IADLS by number
and percentage of patients and caregiver rating of
the patients health status.

 

Variable Number Percent

 

f of Dependencies

in ADLS
0 7 16.7
1 3 7.1
2 3 7.1
3 3 7.1
4 3 7.1
5 8 19.0
6 15 35.7

f of Dependencies

in IADLS
0 0 0.0
1 1 2.4
2 0 0.0
3 2 4.8
4 1 2.4
5 6 14.3
6 32 76.2

Rating of Patients

Health Status
Good 13 31.0
Fair 14 33.3
Poor 14 33.3
Missing 1 2.4

 

consisted of such items as, cooking, housework, shopping and
laundry. The average number of dependencies in ADLS was 3.8
out of 6 and in IADLS was 5.5 out of 6. The majority of the
caregivers rated the patients health as fair or poor.
Research Question
The purpose of this study was to describe the perceived

impact of burden (psychosocial and physical) on caregivers

33
of an individual who has had a stroke. Three sub-categories
of the CRA were utilized. Caregiver esteem and impact on
schedule were used to measure impact on psychosocial health.
The impact on health subscale was used to measure the
physical impact of caregiving.

Table 8 describes the range of mean scores obtained for
each subscale of the CRA, caregiver esteem, impact on
schedule and impact on health. The CRA utilized a five
point likert type scale in which 1=strongly disagree,
2=disagree, 3=neither agree or disagree, 4=agree and
5=strongly agree. Two of the questions under the impact on
health subscale were reversely scored, it takes all my
physical strength to care and I am healthy enough to care.
Overall the caregivers had a mean score of 3.8 (sd = .94) in
the area of impact on schedule, 4.0 (sd = .62) for esteem
and 2.4 (sd = .79) for impact on health.

Incidental Findings

In addition to looking at the caregiver group as a
whole, the investigator also compared the mean scores for
each of the CRA subcategories for spouse and nonspouse
caregivers, employed and non-employed caregivers, male and
female caregivers, living arrangements between the caregiver
and the patient and patient functional ability to see if
there was any difference in the perceived impact of
caregiving between either of these groups (see Table 9).

Overall the mean scores for each of these groups were

consistent with the average scores for all of the caregivers

34

Table 8: Number and percentage of caregivers according to
scores on CRA subscales: Caregiver Esteem, Impact
on Schedule and Impact on Health (n=42)

 

 

Variable Number Percent
Esteem
1.00 - 1.99 0 0.0
2.00 - 2.99 0 0.0
3.00 - 3.99 23 54.7
4.00 - 4.99 15 35.8
5.00 4 9.5
Schedule
1.00 - 1.99 l 2.4
2.00 - 2.99 6 14.4
3.00 - 3.99 13 31.1
4.00 - 4.99 16 38.1
5.00 6 14.3
Health
1.00 - 1.99 10 23.9
2.00 - 2.99 24 57.1
3.00 - 3.99 7 16.6
4.00 - 4.99 1 2.4

5.00

 

35

Table 9: Comparison of type of caregiver by mean score for
subcategories of CRA.

 

 

 

 

 

 

Caregiver Esteem Schedule Health
Spouse 3.9 3.8 2.4
(n=29) (sd .59) (sd .84) (sd .85)
Daughters 4.1 3.8 2.2
(n=12) (sd .65) (sd 1.19) (sd .64)
Employed 3.8 3.8 2.4
(n=10) (sd .48) (sd .99) (sd .83)
Non-Employed 4.0 3.9 2.4
(n=32) (sd .66) (sd .94) (sd .79)
Male 4.6 4.0 2.2
(n=6) (sd .50) (sd 1.10) (sd .95)
Female 3.9 3.8 2.4
(n=36) (sd .58) (sd .93) (sd .77)
Live Together 4.0 3.9* 2.4
(n=38) (sd .63) (sd .90) (sd .87)
Live Apart 3.9 3.2* 2.2
(n=4) (sd . 63) (sd 1.18) (sd .55)
Dependent in 3.8 3.1* 2.2

3 or less ADLs (sd .62) (sd 1.00) (sd .76)
(n=16)

Dependent in 4.1 4.3* 2.4

> 3 ADLS (sd .61) (sd .54) (sd .82)
(n=26)

Dependent in 3.6 2.7! 2.3

3 or less IADLS (sd . 32) (sd .61) (sd .43)
(n=3)

Dependent in 4.0 4.0* 2.4

> 3 IADLS (sd .63) (sd .90) (sd .82)
(n=39)

 

(* Chi Square = p < .05)

36
as a whole. The largest difference within these groups was
found in the area of impact on schedule between caregivers
of patients who were dependent in greater than three IADLS,
and caregivers of patients who were dependent in less than
three IADLS. Other areas in which a difference in mean
scores is seen is in relation to the living arrangements,
and dependency in ADLS when looking at the impact on
schedule subscale. Difference were also seen in the area of
caregiver esteem between spouses and daughters and male and
female caregivers.

A Chi-square was performed on each of the areas in
which a difference was seen in mean scores in order to
determine if there was any significance between the
variables. In relation to impact on schedule a statistical
significance was found between living arrangements,
dependency in ADLS and dependency in IADLS (p < .05). There
was no statistical significance found in relation to
caregiver sex or relationship to patient and caregiver
esteem (p > .05)

DISCUSSION

From the findings in this study a profile of a
caregiver for an individual who has had a stroke can be
developed. This profile is one of a female spouse, over the
age of 55, who is unemployed or retired with a income less
than $30,000 per year. This caregiver provides sixteen or
more hours of care per day for an individual who is

dependent in most or all of their ADL's and IADL's.

37

Some of the characteristics of this caregiver is
consistent with caregivers from other groups found in the
literature. The majority of the caregivers in this study
were female, this is consistent with sample findings in
other studies that look at caregiver burden (Given et al.,
1988; Baumgarten et al., 1992). Also consistent with other
studies included in the caregiver literature (Abraham 8
Berry, 1992; Covinsky et al., 1994) spouses and/Dr adult»
children comprised the largest percentage of the sample.
The majority of the caregivers (57.2%) provided sixteen or
more hours of care per day, indicating that this group of
patients required a high level of care. This is also
indicated in the finding that 90.5% of the patients were
dependent in five to six IADLS and 54.7% of the patients
were dependent in five to six ADLS.

In utilizing the XYZ model to look at the outcomes or
findings of this study in relation to the perceived
psychosocial and physical impact on health, one can see that
the taking on of the caregiver role does produce a impact on
the caregivers' psychosocial health. The caregiver esteem
mean score of 4.0 (sd = .62) demonstrated that caregivers
had positive feelings or reactions to their caregiver role.
This subscale measured how the extent in which caregiving
influenced or imparted esteem on the caregiver.

The caregivers identified a more negative reaction
toward the impact on their schedule (m = 3.8, sd = .94).

This subscale measured how much the caregiver felt

38
caregiving influenced their personal time and ability to
perform usual activities. A significant relationships was
found between impact on schedule and dependency in ADLS and
IADLS (p < .05). Caregivers who cared for an individual who
was dependent in more than three ADLS and IADLS demonstrated
the greatest impact. These patients probably required more
care which resulted in a greater time requirement from the
caregiver.

Significance was also found in the relationship between
caregiver and patient living arrangement and impact on
schedule (p < .05). Caregivers who resided with the patient
reported the highest levels of impact in this area. Once
again, this is probably related to the patients’ health
status and time required in caregiving. Patients who
resided with the caregiver most likely required more
caregiving activities than those who were able to live apart
from the caregiver.

Impact on the caregivers physical health was not
perceived as negative or positive (m = 2.4, sd = .79). The
majority of the caregivers (81.0%) disagreed that their
physical health had been affected by their caregiving role.
The remaining caregivers (16.6%) did experience or agreed
that their physical health had been impacted. This finding
can possibly be attributed to the newness of the caregiving
role. The data for this study were collected within three
months from discharge from the hospital. In addition most

individuals who have had a stroke experience more physical

39
deficits than cognitive deficits. The ability for most of
these patients to comprehend and communicate, either
verbally or nonverbally, is still intact, this may decrease
the negative effects of caregiving.
Limitations and Assumptions

This study is limited by the fact that it is secondary
analysis of data. The small sample size prevents its
generalization to all family caregivers of stroke patients.
Another limitation includes the fact that this study did not
take into consideration the effects that the patients’
characteristics, caregivers’ characteristics and prior
relationship of the caregiver and patient had on the
perceived effects of caregiving on the family caregiver. A
final limitation is that the patient classification of
stroke was one that was self-reported by the caregiver.

The XYZ model used as the conceptual framework for this
study had advantages and disadvantages. The model which is
linear in nature, allowed for a clear depiction of the
events which produce a caregiving situation. From this line
of events one can see how an impact on the caregivers
physical and psychosocial health can develop.

However, due to the linear style of this model,
influencing factors such as, living arrangements, financial
status, social support systems, and caregiver/care receiver
relationship are difficult to measure. Caregiving, actually
is a multidimensional situation. In order to assess how

each dimension influences and/or contributes to the

40
caregivers reactions, a framework which takes a more
multidimensional approach should be utilized. Possible
frameworks which could have been utilized are: 1) the
caregiving framework developed by Given, Collins & Given,
1988, or 2) a model based on the utilization of Family
Systems Theory.

The following conclusions or assumptions can be made
from this study: 1) family caregivers of an individual who
has had a stroke do perceive effects on their psychosocial
health; 2) these perceived effects are greater on the
caregivers of patients who are dependent in three or more
IADLS and three or more ADLS and on caregivers who reside
with the patient; 3) family caregivers of an individual
perceive a positive effect on their esteem versus a negative
effect their schedule; and 4) family caregivers perceive
neither a positive or negative effect on their health
status.

Implications for Future Research

Due to the limited literature on caregiver burden in
this population, this study was descriptive, however, this
study does produce several possible directions for future
research. Since this study did not take into consideration
any specific patient and/or caregiver characteristics, and
or the nature of the relationship between the caregiver and
the patient prior to the caregiving relationship, additional
studies may want to address the influence these factors have

on the caregivers perceived impact of burden.

41

The focus of this study was on the beginning or onset
of the caregiving role. Unlike patients with Cancer or
Alzheimers, whose conditions deteriorate over time,
individuals who have had a stroke may see no changes in
their conditions or they may improve over time. It is
important to look at how this can effect the perceived
impact of caregiving. An assumption can be made that with
improvements in the patients condition one would see a less
negative effect on the caregivers schedule over time.

If the stroke patient's condition did not change over
time would there be an improvement to the impact of the
caregivers schedule, possibly attributed to the development
of time management skills, or would there be an increase in
the effect perceived on the caregivers health and esteem?
Without longitudinal studies these assumptions and/or
questions can not be answered. Longitudinal studies are
needed to see how the perceived effects of caregiving are
changed over time.

In addition, it is important to see how caregivers of
an individual who has had a stroke compare with caregivers
of other types of individuals. In comparing other groups,
such as cancer patients and alzheimers patients, it is
important to assess if the overall impact of caregiving
varies and how. An assumption could be made that caregivers
of individuals who have had a stroke and caregivers of an
individual who has alzheimers both experience similar

overall levels of burden. However, the influencing factors

42

that produce the burden may vary, and the amount of impact
on specific areas, i.e., schedule, physical health, and
esteem may also vary. Only one study by Draper et al.
(1992) has attempted to compare stroke caregivers with
another population. Until more studies are done of this
nature a true understanding of how the caregiving experience
varies between groups of caregivers cannot be achieved.

Future research by also want to address if there is a
difference between types of stroke patients. Some stroke
patients suffer from more of a psychological effect, i.e.,
dementia versus a physical effect, i.e., hemiplegia. Many
stroke patients develop aphasias, or difficulty with
communicating. Some aphasia patients have an inability to
understand or comprehend communication as well as an
inability to communicate. Other aphasia patients may just
have difficulty with speech but are able to comprehend. How
does this effect the caregivers perception of burden. Does
the age of the patient and/or the age of the caregiver at
the onset of the stroke have an influence on the perceived
burden and how much does socioeconomic status, education,
support systems influence the amount of burden experienced.
These questions need to be addressed through future research
projects.

Another focus for future research is to utilize a
larger sample size to see if similar results are produced.
Sources that could be utilized to find individuals to

participate in future studies could be 1) stroke caregiver

43
support groups, 2) hospital rehabilitation units or
rehabilitation centers, and/or 3) hospital stroke units -
many hospitals recently have developed stroke units or
specific stroke programs that specialize in the treatment of
stroke patients.

Studies of this type and others mentioned above should
help to generate nursing interventions for this population
of caregivers. These interventions such as the develoment
of 1) support groups, 2) respite services, 3) educational
programs, and 4) legislation, should focus on decreasing the
amount to burden experienced by the caregiver of an
individual who has had a stroke.

Implications for Advanced Nursing Practice

Implications for the advanced practice nurse (APN) in
primary care can be derived from the findings in this study.
In addressing these implications the APN needs to utilize
his/her different role characteristics. Implications for
the roles of assessor, advocate, educator, planner, leader,
clinician and researcher will be discussed. These
implications can also be applied to other health care
professionals who provide services to family caregivers as
well.

The findings from this study suggests that family
caregivers of an individual who has had a stroke tend to be
female spouses over the age of 60. As an assessor the APN
is responsible for the identification of data, subjective

and objective, that may influence the patients health

44
status. In collecting subjective data from this group of
individuals, especially older female clients, the APN needs
to include in the assessment specific home and social
factors. Specific questions the APN may want to address
are: is this individual a caregiver and to whom; what is the
caregiving situation like; how does she perceive the
situation and its effects on her health; does she have
assistance; and how much and what type of care is required?
Objectively the APN needs to assess the caregiver for
possible physical and/or psychological effects of caregiving
i.e. hypertension, fatigue, depression and/or anxiety.

The APN also needs to be aware of the impact on the
caregivers schedule that is produced by the caregiving
situation. This study found caregivers care for very
dependent individuals and that this dependency negatively
influenced the caregivers schedule. This impact may prevent
the caregivers ability to seek health care for themselves,
and may make it difficult for them to bring the care
receiver in for necessary health care visits. Gaynor (1990)
suggest that home assessments and checkups done by nurse
practitioners may ease some of the burden. Abraham and
Berry (1992) also recognize the importance of in home
monitoring of the caregivers health when they are unable to
make a regular appointment.

In home monitoring does not only allow for the meeting
of specific health care needs, it also allows the APN to

better assess the home environment and to see how the

45
caregiver deals with some of the specific demands of
caregiving. This assessment can allow the health care
professional to have a better understanding of that
caregivers specific situation and allow for the development
of specific and individualized interventions.

The APN in primary care needs to do a continuous
assessment of the caregiving situation. This continual
assessment is needed in order to pick up changes in the
caregiving situation that may occur over time and have an
impact on the caregivers health status. This assessment may
need to occur when the caregiver brings the care recipient
in to be seen due to the amount of time required in caring
for this individual and the impact that is felt by the
caregiver on his/her schedule. An assessment of the
caregivers social support system is also essential.

Once the assessment is made the APN as a planner, can
collaborate with the family caregiver to develop a goal
directed plan of care. The overall goal for this plan
should be the maintenance and/or achievement of outcomes
that promote the health status of the individual, and
decrease the negative effects caregiving has on the
caregiver. The plan needs to take into consideration the
caregivers socioeconomic status, support systems and hours
needed in the provision of care. Findings from this study
indicate that caregivers for an individual who has had a
stroke come from lower income households and provide many

hours of care to very dependent individuals.

46

The APN as a planner may also assist in or
independently develop programs to assist the caregiver.
Based on the findings from this study programs focused on
the teaching of time management skills and also the
development of programs for the purpose of respite care
would be important. Both of these programs hopefully would
help to decrease the amount of impact on the caregivers
schedule. Also by teaching and/or providing these services
the caregiver over time would continue to have positive
effects on their esteem and effects on their physical health
would be minimized. Other programs could be developed that
focus on caregiver support, education of other health care
providers, and education of caregivers.

This plan of care may require the APN to utilize the
role of advocate. The role of advocate is based upon a
relationship that promotes mutuality and empowers the
client. Through this relationship, the APN can assist the
individual in identifying their rights and abilities as a
caregiver. Resources can then be identified that can assist
the family caregiver in his/her role. These resources can
include community support groups, local or national
associations for caregivers, and respite programs.

Through the role of educator the APN can assist the
family caregivers of stroke and nonstroke patients, in
learning skills that may be required for caregiving as well
as educating in regards to available resources. The

specific skills required by family caregivers were not

47
addressed by this study, however, many of the family
caregivers in this study, as well as caregivers for other
individuals, may be required to perform tasks that are
usually performed by health care professionals. These tasks
may influence the caregivers perceived impact of burden, due
to a lack of knowledge regarding necessary skills or tasks
they may be asked to provide. Also as an educator the APN
can increase the caregivers knowledge and awareness to the
effects of a stroke and how this may impact the care they
provide.

The APN could develop educational programs that address
specific tasks of caregiving, i.e., lifting, transferring,
bathing and dressing as well as teaching the caregivers how
to manage time, balance a check book, pay bills and/or do
minor home repairs. Many of the caregivers in this study
are older women caring for their husbands. Many of whom
never had to worry about paying the bills or fix a leaky
faucet. This lack of knowledge can attribute to the amount
of burden perceived by the caregiver. Programs specifically
focused on these areas can provide knowledge needed by
caregivers and also provide a form of support through the
development of relationships with other caregivers. These
individuals do not need to feel like they are alone.

In addition to educating the caregiver, the education
of primary care providers, acute care providers and policy
makers needs to also occur. The education of primary care

providers can help to improve their awareness of the issues

48
impacting caregivers. Acute care providers need to be made
aware of the impact caregiving has on family caregivers in
order to increase their awareness of how education of the
caregiver and referral to support groups prior to discharge
can help to possibly decrease the negative impact of
caregiving.

The education of policymakers needs to occur in order
to increase their awareness of how much care is provided in
the home and how this affects the caregivers. With this
increased awareness the needs of caregivers and the need for
support services and respite services can be considered in
health care reform legislation.

Support services for caregivers are essential for their
psychological well being. These services can be in the form
of organized caregiver support groups or as individual
counseling services. Abraham and Berry (1992) state peer
counseling from individuals or support groups can help the
caregiver maintain a health perspective. Legislators need
to be made aware of this important service for caregivers in
order to help provide services that are free of charge or
reimbursable through third party payers.

Respite services are also essential for the caregivers
well being. Respite care can allow the caregiver time away
from the care receiver. This time can be for the purpose of
attending support groups, educational programs or for

leisure time which allows the caregiver to have a rest.

49

Many respite services require an out of pocket expense
from the caregiver. It is important for APN’s to educate
policymakers about the importance of respite services and
the financial restraints placed on family caregivers for the
purpose of legislation that would assist in third party
reimbursement for respite services and/or for the allowance
of programs which could be supplemented by the government
for the provision of respite care.

The APN as a leader needs to assist policymakers and
others that are involved in healthcare reform process. The
APN in this role needs to assist with the development of
legislation that will provide support for and assist family
caregivers.

There are several implications for the APN as a
researcher. One is for the APN as a consumer of research,
specifically research that has focused on family caregivers.
The APN needs to be aware of what the literature shows as
far as the effects on family caregivers, as well as what
interventions are effective in assisting to decrease the
effects of caregiving. The APN, as a researcher, also may
want to further study the effects of caregiver burden, as
mentioned earlier, this study has several implications for
future research, these implications could easily be

addressed by the APN.

50
Summary

This study has looked descriptively at caregivers of an
individual who has had a stroke in an attempt to begin to
describe the impact of burden experienced by this groups of
caregivers. Caregivers of an individual who has had a
stroke do experience a impact on their psychosocial health.
This impact is positive, in relation to their esteem, and
negative, in relation to the impact on their daily
schedules. The data did not reflect that this group of
caregivers perceived an impact on their physical health.
This study, as discussed earlier has many implications for
future research and for the APN in primary care. And only
through the continued efforts of APNs and other healthcare
professionals willing to address the issue of caregiver
burden in this population, as well as other populations, can
an impact be made on the negative affects caregiving has on

the caregivers psychosocial and physical health status.

REFERENCES

References

Abraham, P., & Berry, M. (1992). Needs of the family

caregivers of frail elderly. Qanodian journal of ouolic
nggign, 83(2). 147-149.

Barnes, C., Given, B., & Given, C. (1995). Parent
caregivers: A comparison of employed and not employed

daughters. Sooinl Wonk, 50(3), 375-381.

Baillie, B., Norbeck, J. & Barnes, L. (1988). Stress,
social support & psychological distress of family caregivers

of the elderly- EurEiDs_EsEsarshi_31(4). 217-222-

Barusch, A. & Spaid, W. (1989). Gender differences in
caregiving: why do wives report greater burden.

Gerontologist, 29(5), 667- 676.

Baumgarten, M., Battista, R., Infante-Rivard, C.,
Hanley, J., Becker, R. & Gauthier, S. (1992). The
psychological and physical health of family members caring

for an elderly person with dementia. u n l ' 'cal
Eoioomiology, 45(1), 61-70.

Berry, G., Zarit, S. & Rabatin, V. (1991). Caregiver
activity on respite and nonrespite days: A comparison of two

service approaches. Gorongologisg, 31(6), 830-835.

Biegel, 0., Sales, E. & Schulz, R. (1991) Eonily
Coreoiving in cnronic Illness. p. 29-61. Newbury Park: Sage

Publications.

Braithwaite, V. & McGown, A (1993). Caregivers
emotional wellbeing & their capacity to learn about stroke.

Journal of Advanced Nunsing, 18(2), 195-202.

Brandriet, L., Lyons, M. & Bentley, 3. (1994).
Perceived needs of poststroke elders following termination

of home health services. Nursing Q Healnncoge, l§(10), 514-
520.

Brink, P., & Wood, M. (1988). fiosic steps in olnnning
reseagcn: firom guosnion no ozooosol, 3rd ed. p. 100-103.

Boston: Jones & Bartlett Publishers.
Clipp, E., & George, L. (1990). Caregiver needs and

patterns of social support. gougnal o: Gegontology, 55(3),
8102-8111.

51

52

Covinsky, K., Goldman, L., Cook, F., Oye, R., Desbiens,
N., Reding, D., Fulkerson, W., Connors, A., Lynn, J. &
Phillips, R. (1994). The impact of serious illness on
patients’ families. 1AMA1_212(23). 1839-1844.

Darin, K., Pohl, J. 8 Given, C. (1989- 1993)

zosoonses IQ nona ging oldezly oa agients at home, final
report. (grant #2 R01 A6065484). East Lansing: Michigan

State University, Department of Family Practice.

Davis, L., & Grant, J. (1994). Constructing the reality
of recovery: Family home care management strategies.

AdxaD2_E_1n_nursins_§sisnsei_11(2). 66- 76-

Dillehay, R. & Sandys, M. (1990). Caregivers for
alzheimer's patients: What we are learning from research.

Ing'l Journal 0; Aginq and Human Devoloomong, 39(4), 263-
285.

 

Draper, B., Poulos, C., Cole, A., Poulos, R. & Ehrlich,
F. (1992). A comparison of caregivers for elderly stroke and
dementia victims. QAGS, 49(9), 896-901.

Evans, R., Bishop, D., & Haselkorn, J. (1991). Factors
predicting satisfactory home care after stroke. AI£h_EDY§

Ned Behobil, 72(2), 144-147.

Evans, R., Bishop, D. & Ousley, R. (1992). Providing
care to persons with physical disability: effect on family

caregivers. Amegican Jougnal o: Ehysioal Medioino g
Bonablitaion, 7l(3), 140-144.

Evans, R., Leith-Matlock, A., Bishop, D., Stranahan,
S., & Pederson, C. (1988). Family intervention after stroke:
Does counseling or education help. sgroko, l9(10). 1243-
1249.

Gaynor, S. (1990). The long haul: The effects of home
care on caregivers. lmage, 22(4), 208-212.

George, L. & Gwyther, L. (1986). Caregiver well being:
A Multidimensional examination of family caregivers of

demented adults. Gerongologist, 26(3). 253-259.

Given, B. 8 Given, C. (1995). Family caregiver burden
from cancer care. 8. Baird, R. McCorkle & M. Grant (eds).

Manuscript submitted for publication in c .
gonozenensive TQXIDQOR (2nd Edition). Orlando, FL: W.B.

Saunders Company.

53

Given, B., & Given, C. (1991). Family caregivers of
cancer patients. in S. Hubbard, P. Greene & pM. Knohf (eds).

QEIIéDI_I§S2Q§_in_an£§I_NBI§inQ_E£§Q£12§ Po 1' 9-
Philadelphia: JB Lippincott.

Given, C., Given, B., Stommel, M., Collins, C., King
8., & Franklin, S. (1992). The caregiver reaction assessment
(CRA) for caregivers to persons with chronic physical and

mental impairments. Be_earch_iD_Eur_ing_and_flealthi_1§ 271-
283.

Given, 8., King, 8., Collins, C. & Given, C. (1988).
Family caregivers of the elderly: involvement and reaction

to care. arsDixeE_2f_£_xshiatric_nursinsi_2(5) 281-288-

Grafstrom, M., Norberg, A., & Hagberg, B. (1993).
Relationships between demented elderly people and their
families: a follow-up study of caregivers who had previously
reported abuse when caring for their spouses and parents.

gounnal of Advonceo Nnrsing, 19(11), 1747-1757.

Hickey, J. (1992). r

Ths_clinisal_2_astise_cf
neuzological ono nongosngiool nnzs ing, 3rd ed. p. 519.
Philadelphia: JB Lippincott.

Killeen, M. (1990). The influence of stress and coping
on family caregivers perceptions of health. lnt’l Jonznal of
Aging and Human Development, 39(3), 197-211.

Malonebeach, E. & Zarit, S. (1991). Current research

issues in caregiving to the elderly. ln;;l_gy_nging_§_flnnon
povoloonent, 32(2). 103-115.

Marshall, 8., Marshall, L., Vos, H. & Chesnut, R.
(1990) en osc'e c Cr' 'ca C e' ath '

Eatieng Management. p. 216. Philadelphia: W. B. Saunders.

Mclean, J., Roper-Hall, A., Mayer P. & Mian, A. (1991)
Service needs of stroke survivors and their informal carers:

a pilot study. gournal of Advanced Nursing, l§(5), 559-564.

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

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

Noll, S., & Roth, E. (1994). Stroke rehabilitation:
Epidemiologic aspects and acute management. Agcn. Enys Mod

Benabil, 75(5-5). S-38-S-41.

Pett, M., Caserta, M., Hutton, A., & Lund, D. (1988).
Intergenerational conflict: Middle-aged women caring for
demented older relatives. Amerioan gournal of

Orthoosycniatric Society, 98(3). 405-417.

54

Pohl, J., Given, C. 8 Given, B. (1990 - 1991) goyogiyo;
WW. progress
report 5/01/90 - 4/30/91. (grant #2 R01-AGO6584-06). East
Lansing: Michigan State University, Department of Family
Practice.

Pruchno, R. 8 Resch, N. (1989). Husbands and wives as
caregivers: Antecedents of depression and burden.

gonontologist, 29(2), 159-165.

Sayles-Cross, S. (1993) Perceptions of familial
caregivers of elder adults. lmoge, 29(2). 88-92.

Schulz, R., Tompkins, C. 8 Rau, M. (1988). A
longitudinal study of psychosocial impact of stroke on

primary support persons. Eoyonology_§_Agingy_9(2). 131-141.

Silliman, R., Wagner, E., 8 Fletcher, R. (1987). The
social and functional consequences of stroke for elderly

patients. Stroke, 18(1). 200-203.

Stoller, E. (1983). Parental caregiving by adult

children. gournol o: Mozriage and fine Eonily, November, 851-
858.

Stroker, R., (1983). Impact of disability on families

of stroke clients. WM“)-

360-365.

Tompkins, C., Schulz, R. 8 Rau, M. (1988). Post-Stroke
depression in primary support persons: predicting those at
risk. ournal o onsultin a d inica s cholo 56(4).
502-508.

Wade, D. (1992). Stroke: Rehabilitation and long-term
care. Lancet, 992(3). 791-793.

Wade, D., Legh-Smith, J., Langton-Hewer, R. (1986).
Effects of living with and looking after survivors of a
stroke. flflgy_29;(8). 418-420.

Wright, L., Clipp, E., 8 George, L. (1993). Health

consequences of caregiver stress. Medicine, Exezoise,
Nuggigion and Hoalth, 2, 181-195.

Yaffe, M. (1988). Implications of caring for an aging
parent. QMAJ, l39(2). 231-235.

Young, R. 8 Kahana, E. (1989). Specifying caregiver
outcomes:gender 8 relationship aspects of caregiving strain.

ngongologist, 22(5). 660-666.

APPENDICES

APPENDIX A

Sample Criteria
"Caregiver Responses to Managing Elderly Patients at Home"

1. 55 years of age or older
2. Had a designated person to assist the patient at home

3. Had experienced new losses in functioning following
discharge from the hospital

Source: Darin et al., 1989 - 1993

55

APPENDIX B

CAREGIVING INVENTORY

ID 1-3

CARD 9' I 9 74-6
DATE -12
INT ‘ J" J‘ ‘13-14
rurcoot 1 1s
STUDY 5 16

He are trying to understand how providing care for your family member has affected you, your
relationships with others, and your social activities and daily routines.

In the questions that follow, please circle the response that most represents non_yon_jggl
about each statement.

for your relative.

v . It may be helpful (but is not necessary) for you to place
the initials of the person on the blank line. Answer all the questions in response to caring

Please circle one number for goon statement using the code below:

 

5 - STRONGLY AGREE
4 - AGREE
3 - NEITHER AGREE 0R DISAGREE
2 - DISAGREE
1 - STRONGLY DISAGREE
(CIRCLE ONE NUMBER
FOR EACH)
1. My activities are centered around care for 5 4 3 2 l 17_
2. I am healthy enough to care for 5 4 3 2 1
IT!—
3. My family works together at caring for 5 4 3 Z 1 T9—
3. Caring for is important to me. 5 4 3 2 l ___
20
5. Since caring for l have enough time for myself. 5 4 3 2 1 2T—

01

I feel overwhelmed by the problems I have caring for
It takes all my physical strength to care for .
I enjoy caring for

I wish the family depended less on me to care for

10. l have to stop in the middle of my work or activities to

provide care.

56

o—INUIDUI

STRONGLY AGREE

AGREE

NEITHER AGREE 0R DISAGREE
OISAGREE

STRONGLY DISAGREE

(CIRCLE ONE NUMBER

UIU'IUIUI

FOR EACH)
4 3 z 1
IT
4 3 2 1
73.
4 3 z 1
2T
4 3 2 1 ___
25
4 3 2 1 .__
26

10
64851113

S - STRONGLY AGREE

4 - AGREE

3 - NEITHER AGREE OR OISAGREE
Z - OISAGREE

I - STRONGLY OISAGREE

(CIRCLE ONE NUNSER
FOR EACH)

11.
12.
13.
14.

15.

16.

17.

My health has gotten worse since I’ve been caring for 5 4 3 2 27_
Since caring for , I feel my family has abandoned me. 5 4 3 2 23_
Caring for makes me feel good. 5 4 3 2 15-
l have enough time for leisure and recreational activities
since caring for 5 4 3 2

'55
It is very difficult to get help from my family in taking
care of . 5 4 3 2

3'1"
Being a caregiver prevents me from taking care of my
own health. 5 4 3 2

ET
I feel privileged to care for 5 4 3 2

33"

5 - STRONGLY AGREE

4 - AGREE

3 - NEITHER AGREE 0R OISAGREE
2 - OISAGREE

I - STRONGLY OISAGREE

(CIRCLE ONE NUMBER

19.

20.
21.
22.

24.

FOR EACH)
33
Other have dumped caring for onto me. 5 4 3 2 I §__
4
I have eliminated things from my schedule since
caring for 5 4 3 2
3'5—
I believe it is my responsibility to care for 5 4 3 2 §__
6
I get very discouraged caring for 5 4 3 2 57_
I have enough physical strength to care for 5 4 3 2 §__
8
The constant interruptions make it difficult to find time
for relaxation. 5 4 3 2
13'
My family (brothers, sisters, children) left me alone to
care for 5 4 3 2 ___
40

57

25.

26.
27.

28.

29.
30.
31.

32.
33.
34.

35.
36.

37.

38.

39.

10
CARDEIB

STRONGLY AGREE

AGREE

NEITHER AGREE OR OISAGREE
OISAGREE

STRONGLY OISAGREE

(CIRCLE ONE NUMBER FOR EACH)

e-eNuOM
IIIII

Since caring for , it seems like I’m tired all of the
time. 5 4 3 2. I '
4'!"
I really want to care for . 5 4 3 2 1
1'2"
, Since caring for , sometimes I hate the way my life has
turned out. 5 4 3 2 l
13'
I visit family and friends less since I have been caring
for . 5 4 3 2 I
— 44—
Taking care of has no; affected my physical health. 5 4 3 Z l 35'
I feel I was forced into caring for . 5 4 3 2 1 IE-
I have enough time to do my own work and chores since caring
for . S 4 3 2 I
37'
STRONGLY AGREE
AGREE
NEITHER AGREE 0R OISAGREE

OISAGREE
STRONGLY OISAGREE

(CIRCLE ONE NUMBER FOR EACH)

e—onbm
IIIII

I will never be able to do enough caregiving to repay . 5 4 3 2 I _§_
4
I feel trapped by my caregiving role. 5 4 3 2 I
Since I began taking care of my relative, I take better care
of n1 health. 5 4 3 2 I
50’
I sleep just as much since caring for . 5 4 3 2 I §__
1
At this time in my life, I don’t think 1 should have to be
caring for . S 4 3 2 I
ET
I am sick more often since I began caring for my relative. 5 4 3 2 1
SS-
1 could not live with myself if I Just quit caring
for . 5 4 3 Z I
34—
Just when I thought times were going to be easier for me.
I have to be a caregiver. S 4 3 2 1
SS—

(71

58

10
“BEETS

Please remember we are trying to understand how providing care for your family member has

affected you.

Please circle one number for gosh statement using the code below:

4 - A GREAT DEAL
3 - QUITE A BIT
2 - SOME NHAT

I - VERY LITTLE

(CIRCLE ONE NUMBER

 

FOR EACH)
To what extent ...
40. do you get frustrated with your situation? 4 3 2 1 SE—
41. are you so frustrated that you have to leave the room? 4 3 2 1 $7_
42. did you get angry with the person for whom you were providing
care? 4 3 2 I
. ss—
43. do you feel that you are manipulated by the person for whom you
were providing care? 4 3 2 1
ST
4 - A GREAT DEAL
3 - QUITE A BIT
2 - SOME HHAT
l - VERY LITTLE
(CIRCLE ONE NUMBER
FOR EACH)
44. did you resent the fact that others didn’t help provide care? 4 3 2 I 3"
0
45. do you believe your relationship with your relative is
strained? 4 3 2 l
61
16. did you become irritated with the person for whom you
provided care? 4 3 2 I
62"
47. did you resent the way your life has turned out? 4 3 2 1 33'
48. did you get so angry you have to stop what you are doing? 4 3 2 I
ST
19. do you get so upset that it interferes with caring? 4 3 2 l 33‘

(8)

59

APPENDIX C

 

I! "If iii
RESEARCH
AND
GRADUATE
STUDIES

Mflfiwfithmmnh
23? Malian ammo
Inflsmwlwmvm
fllfliMG

517/155 21’)
TAX 511/412-1171

Inuwmnsenmmm
lTleumunuOMue
“whnmbnm

"(Hm "Me than
awnwwnqaunm

   
   

MICHIGAN STATE

 

UNIVLIISII

April 10, 1995

To: Denise Soltow

RI: Illl:
TITLE:

REVISION REQUESTED:

CATEGORY:
APPROVAL

DATE:

Y

,S-IOQ

NNAI IS THE PERCEIVED IMPACT OF BURDEN
EXPERIENCED DI CAREOIVIRS OF AN INDIVIDUAL WHO
:7: HAD A STROKE?

-H
04/10/95

The University Committee on Research Involving Human Sub ects'iUCRlHS)
review of this project ls complete. I am pleased to adv as that the
rights and welfare of the human subjects appear to be adequately
protected and methods to obtain informed consent are approprist .
herefore, the UCRIMS approved this project Including any revision

listed above.

 

RENEWAL: UCRIHS approval is valid for one calendar year, beginning with
the approval date shown shove. Investigators planning to

continue a project beyond one year must use th
form (enclosed with t:
pro ect is renewed) to seek usdste
mam mum of four such expedite
to continue a roject beyond tha time need to submit it

wishing
n or complete rev ew.

agai

green renewal

e original asproval letter or when a
certification. There is a

renewals ssible. Investigators

asst-loss: UCRIHS must review anytchanges in rocedures involving h

sub)

acts,

the time o

revise an approved protocol at an
tten request to the CRIHS Cha r, r uesting revised

send your wr
approval and referencing the project's IRS and itle. Include
P

in

PROILINS/

work

our f

rior to in

uman
istion of t e change. If this is done at

renewal, please use the green renewal form. To
0

uest a descr
ins ruments,

, investi

consent forms or advertisements that

her time during the year

tlon of the change and any revistg bl
re app es s.

Claudia: Should either of the followin arise during the course of the
1

changes

2
nAIcatlng greater risk to the human sub ects than

ators must noti y UCRIMS romptly: 11) problems
(unexpected e de effects comp a in olv ng
subjects or In
information

ints, e c.
the research environment or new

existed when the protocol was previously reviewed an approved.

If

incer

ucerns Chair ,

Dlflzpjm

cc: Barbara A.

avid E. Wright,

Given

ID.

60

we can be of any future help please do not hesitate to contact us
at (517)355-2180 or rax (517): €-

171.

MICHIGAN STATE UNIVERSITY

 

 

um”. I» VIII vacuum: ma IIVAII II : u: I \Num. - an "man 0 as): :aw.
\Vll nun en mi GIMNMII ‘1 Hum

April 20. 1992

Charles H. Given
3108 Clinical Center

RE: CAREGIVER RESPONSES TO ELDERLY PATIENTS AT HOME. 1RD '89-175
Dear Dr. Given:

UCRIHS' review of the above referenced project has now been completed. 1 am
pleased to advise you that since reviewer comments have been satisfactorily
addressed. the conditional approval given by the Committee at its March 2. 1992
meeting has now been changed to full approval.

You are reminded that UCRIHS approval is valid for one calendar year. if you
plan to continue this project beyond one year. pleame make provisions for
obtaining appropriate UCRlHS approval one month prior to March 2. 1993.

Any changes in procedures involving human subjects must be reviewed by the UCRIIIS
prior to initiation of the change. UCRIHS must also be notified promptly of any
problems (unexpected side effects. complaints. etc.) Involving human subjects
during the course of the work.

Thank you for bringing this project to our attention. if we can be of any future
help. please do not hesitate to let us know.

Sincerely.

David E. Wright. Q‘Ehfl)

Chairman

University Committee on Research

Involving Human Subjects

DEU/pjm

II" ‘n so Ifloosnonv I. "an 'vu-II l Inn-«Osmon- hunt-um:

£51

(caregiver) MSU fAMILY CARE STUDY
CONSENT FORM

lhe 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 H50 Family Caregiver Study research staff. Each terephone
interview will take approximately 20.40 sinutes to complete. In addition. you may be
asked to complete sailed questionnaires. which should also take about 20-30 minutes. and
return them in the self-addressed stamped envelope. lhe telephone interviews and mailed
questionnaires will be completed at your convenience.

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, and to remain in the study I must continue to meet the
criteria for entry.

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.

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 I will not be placed at any increased risk by participating in this
study. Participation does not involve any physical activity. Interviews will be
administered by thoroughly trained and closely monitored graduate students in a
private and confidential manner.

7. 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 my influence future family care.

8. 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.

 

 

 

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

Signed Date

8/15/89

100:3

62

(patient) HSU 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 NW family Caregiver Study research staff. They will be
asked questions regarding changes in your health and issues related to caregiving. Your
participation will involve providing information 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.

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 rights 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 numiers so the research
staff may identify what insurance benefits I have. with the understanding that they
will remain strictly confidential

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

 

Patient Signature Date
on
Guardian/Family Member Witness

8/15/89
100:3

63

"‘iflifiufiiiiiiiiIiiifliiiiiii‘iji“