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thesis entitled

PREDICTORS OF PERCEIVED LEVELS OF PREPAREDNESS
AMONG CAREGIVERS OF STROKE SURVIVORS

presented by

 

Roxanne Marie Meo

has been accepted towards fulfillment
of the requirements for

 

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PREDICTORS OF PERCEIVED LEVELS OF PREPAREDNESS AMONG
CAREGIVERS OF STROKE SURVIVORS

By

Roxanne Marie Meo

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

1998

ABSTRACT

PREDICTORS OF PERCEIVED LEVELS OF PREPAREDNESS AMONG
CAREGIVERS OF STROKE SURVIVORS

BY

Roxanne Marie Meo

This descriptive study was based on secondary data
analysis from the study “Caregiver Responses to Managing
Elderly Patients at Home”. A sample of 61 caregivers of
stroke survivors were recruited to examine the perceived
level of caregiver preparedness. These caregivers provided
care for individuals who were dependent in most of their
activities of daily living and instrumental activities of
daily living. Preparedness was evaluated through use of a
self-report questionnaire with data collected 6-? weeks
after discharge from the hospital. Proposed predictors of
preparedness consisted of caregiver and care-recipient
characteristics. The findings indicated that the majority of
caregivers felt well prepared to care for an individual who
has had a stroke. Factors found to influence perceptions of
preparedness were unpleasant patient behavior and
relationship status. Recommendations for future research and

implications for the advanced practice nurse are discussed.

ACKNOWLEDGMENTS

I want to thank my thesis committee who provided me
with their expertise and the support needed to complete this
research. To Dr. Manfred Stommel, my thesis chair, who so
patiently guided me through this process. Thank-you for
challenging me to do my best.

To Dr. Celia Wills, thank-you for your insights into
this research process. I am grateful for having the
opportunity to work with you. I appreciate your high
standards and your dedication to research.

To Laura Struble, thank—you for your guidance and
support. I appreciate your perspective and background in
working with stroke patients. I value the time we spent

working together.

iii

TABLE OF CONTENTS

LIST OF TABLES . . . . . . . . . . . . .

LIST OF FIGURES . . . . . . . . . . . . . . . .

INTRODUCTION . . . . . . .

Research Questions

CONCEPTUAL FRAMEWORK

REVIEW OF LITERATURE

METHODS . . . . . . . . . . . . . . . . . . . .
Research Design . . . . . . . . . . . .
Sample and Data Collection . . . . . . . . .
Protection of Human Rights . . . . . .

Operational Definition of Variables
Data Analysis

RESULTS . . . . . . . . . . . . . .

Description of the Sample . . . . . . . .
Research Questions

DISCUSSION . . . . . . . . . . . . . . .

Limitations . . . . . . . .
Implications for Future Research . . .
Implications for Advanced Practice Nurses
Summary . . .

LIST OF REFERENCES

APPENDIX A: Preparedness Scale . . . . . . .
.APPENDIX B: Cognitive Deficit Scale, Health Care
Activities Scale, Activities of Daily
Living Scale, Instrumental Activities

of Daily Living Scale

APPENDIX C: MSU Family Study Consent Form

UCRIHS Consent

iv

10

30
30
31
32
33
36

37
37
4O
46
50
53
56
63
64

68

69

86

Table

Table

Table

Table

Table

Table

Table

LIST OF TABLES

Frequencies and Percentages of Sample
Caregiver Demographics

Frequencies and Percentages of Sample

Patient Demographics

Patient Dependencies in Number of ADL's,
Health Care Activities
and Cognitive Deficits by Frequencies

IADL’S,

as Rated by Caregiver .

Frequencies and Percentages of Sample
Caregivers Perceived Level of Preparedness

(HCA/s),

for all Items on the Preparedness Scale .

Summary Measures for the Preparedness Scale
(without PREP5) and PREPS

PREPAREZ
(Managing Finances)

Multiple Regression to Determine Influence
of Predictor Variables on Caregivers
Perceived Level of Preparedness

Multiple Regression to Determine Influence
of Predictor Variables on Caregivers
Perceived Level of Preparedness

in Managing Finances

38

39

41

42

43

44

45

LIST OF FIGURES

Figure 1: Conceptual Model of the Caregiving Process,
Indicating Relationship of Caregiver-Care
Recipient Characteristics to Perceived
Levels of Preparedness . . . . . . . . . .

Vi

INTRODUCTION

Stroke is the third leading cause of death in the
United States, killing almost 150,000 people every year (US
Department of Health and Human Services [DHHS], 1995).
Nearly 4 million Americans are currently living with varying
degrees of neurological impairment following a stroke,
making it the leading cause of disability among adults
(National Stroke Association [NSA], 1994). A stroke is a
life-threatening event in which the brain's oxygen and
nutrient supply is suddenly cut-off. The specific deficits
resulting from stroke depend on the portion of the brain
affected. The most common disabilities caused by stroke
include hemiparesis or hemiplegia, problems with balance and
coordination, aphasia and dysarthria, dysphagia, visual
field and perception problems, loss of emotional control and
changes in personality and mood, cognitive changes (memory,
judgment, problem-solving), and problems with bowel or
bladder control (DHHS, 1995; Harvard Health Letter, 1996;
Hickey, 1997, chap. 27). Stroke leaves 25 to 50 percent of
survivors with persistent disabilities that require help
with one or more activities of daily living (ADL) such as
bathing, dressing, feeding, and mobility (DHHS, 1995;
Hickey, 1997, chap. 27). The total cost of caring for stroke

survivors is estimated at $30 billion annually in the United

States (NSA, 1994). It is easy to see that the consequent
burdens in human and economic terms are enormous.

Stroke risk increases dramatically with advancing age.
For each decade after age 55 the risk doubles (DHHS, 1995).
Nearly two thirds of strokes occur in people over age 65,
with men experiencing strokes more frequently than women,
and African Americans more frequently than whites (DHHS,
1995; NSA, 1994). With the aging American population
expected to rise dramatically over the next decade,
proportionately more people will be at higher risk for
developing stroke. It is estimated that four out of five
American families will be affected by stroke over the course
of a lifetime (NSA, 1994).

It is estimated that 69% of stroke survivors perform
self-care activities independently, 80% are independently
mobile, and 70% have significant life-changing losses
related to vocational and social functioning (Johnson,
Pearson, & McDivitt, 1997). Stroke survivor outcome and
rehabilitation needs are influenced by location and amount
of brain injury. Discharge disposition of stroke patients to
home, nursing home, or rehabilitation center is strongly
associated with stroke severity and functional status
(Jorgensen et al., 1995; Silliman, Wagner, & Fletcher,
1986). Recovery is limited by the inability of the brain to
replace of regenerate nerve cells. However, different parts

of the brain can either spontaneously or through

rehabilitation be trained to take over functions the
destroyed cells can no longer perform. Frequently, recovery
from a mild stroke is spontaneous and complete (NSA, 1994).
Most stroke survivors, however, experience serious
disabilities in the acute stages, followed by a recovery
period of significant, but not total, improvement from many
of these deficits (Harvard Health Letter, 1996). The brain
has many specialized functions and whether a stroke occurs
on the left or right side can make a difference in outcome
and interventions planned. A left-sided stroke damages the
left hemisphere, resulting in: weakness or paralysis on the
right side of the body; speech and language deficits;
difficulty listening, understanding, gesturing, reading, or
writing; emotional liability; and a slow cautious behavior
style (Hahn, 1987; Hayn & Fisher, 1997). In contrast, a
right-sided stroke damages the right hemisphere, resulting
in: weakness or paralysis on the left side of the body;
spatial and perceptual deficits; memory deficits and
difficulty learning; inability to recognize visual, tactile,
or auditory stimuli; vague emotional responses; and a quick
and impulsive behavioral style (Hahn, 1987; Hayn & Fisher,
1997).

The current emphasis on health care cost containment
and the impact of diagnosis related groups (DRGS) have
contributed to shortened hospital stays. As a result, the

responsibility of providing care to a stroke survivor often

rests with family members who provide informal care in the
home (Davis & Grant, 1994). Most family members assuming the
role of primary caregivers of the dependent elderly are
women, either wives or adult daughters (Cantor, 1983; Stone,
Cafferata, & Sangl, 1987). Frequently, the responsibility
for caregiving is undertaken by individuals with no previous
experience in caring for someone who has a chronic
disability such as stroke (Braithwaite & McGown, 1993).
Families can play a vital role in a stroke survivor's
rehabilitation outcome. Home care is usually the preferred
alternative to nursing home placement and family caregivers
frequently approach their new role with a strong commitment
to performing it well (Boland & Sims, 1996). The role of
caregiver produces a variety of stressors as the physical,
mental, emotional, and spiritual demands and
responsibilities can be overwhelming (Ruppert, 1996). The
degree to which a caregiver is able to adapt can
dramatically affect whether a stroke survivor remains in the
home or is institutionalized. Preparing a family member to
take on the caregiver role should begin while the patient is
hospitalized. However, shortened hospital stays have
compressed the amount of time available for hospital nurses,
therapists, and discharge planners to address caregiver
preparedness for all aspects of care. Caregiver preparedness
refers to caregivers’ perceptions of how ready they are for

performing the tasks of caregiving (Schumacher, Stewart, &

Archbold, 1998). A lack of preparedness in managing a
patient's day—to-day care may result in the caregiver
experiencing undue stress and interfere with the ability to
provide necessary care to the care—recipient.

Though the primary focus of health care providers is on
the patient, family caregivers, whose lives are heavily
affected by the demands of a new role, need just as much
support and attention. Some prospective caregivers feel
overwhelmed and ill-prepared by the demands placed upon
them, they are at heightened risk for depression and
physical illness. Therefore, appraisal of caregivers'
perceptions of how well-prepared they are for providing home
care is necessary in order to plan family-oriented
interventions (Rusinak & Murphy, 1995; Smith, 1994). The
purpose of this study is to explore the level and
distribution of caregiver preparedness and to determine
whether or not specific caregiver and care-recipient
characteristics predict variations in caregiver perceived
levels of preparedness. The ability to identify caregivers
who feel ill-prepared and overwhelmed for their new role
will assist the advanced practice nurse (APN) is suggesting
specific resources, educational programs, or health
promotion strategies.

Research Questions
Specifically, this research will examine the

following three questions:

1. How well-prepared do family caregivers feel in
performing physical care, managing emotional and behavioral
problems, accessing formal services, and managing financial
needs related to home care of stroke survivors?

2. What caregiver characteristics (age, gender,
relationship to patient, educational level, and employment)
predict variations in perceived levels or preparedness?

3. Do care recipient characteristics (age, gender) and
functional limitations in activities of daily living (ADL’s)
(bathing, dressing, toileting, walking) instrumental
activities of daily living (IADL’s) (cooking, housework,
transportation, shopping, money management), health care
activities (HCA’s) (oral medications, injections,
incontinent of urine and/or stool, exercises/physical
therapy), and cognitive deficits (problems expressing
thoughts, confused, forgetful, uncooperative,
depressed/tearful) predict variations in caregivers'
perceived level of preparedness?

CONCEPTUAL FRAMEWORK

An adaptation of the ABCX model (see Figure 1) is
proposed to describe the association of caregiver and care
recipient characteristics with caregiver perceived levels of
preparedness to care for an individual who has had a stroke.
The ABCX model was originally developed by Reuben Hill to
describe the impact of a stressor on family systems and

focuses on stressors, resources, and perceptions to explain

 

 

 

 

 

 

 

 

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the amount of family disruption due to a stressful event. An
assumption of this model is that lack of experience with a
stressor event leads to increased perceptions of
stressfulness (Harmon-Hanson & Boyd, 1996). This model has
four primary concepts: an external event that acts as an
initial stressor (A), resources the caregiver brings to the
situation, (B), perception of the caregiving situation (C),
and the potential crisis (X) that results (Biegel, Sales &
Schulz, 1992, chap. 2). Stressors (A) are events that
disrupt the family system and result in associated
hardships. Examples of stressors include: health of patient,
cognitive functioning, ADL status, and patient
symptomatology. Resources (B) are characteristics the
caregiver can draw upon in times of stress to cope
effectively. This may include: physical, psychological,
material, social, spiritual, informational, and financial
resources. Perceptions © refer to the caregiver's subjective
interpretation of the stressful event. This can be assessed
in terms of burden, guilt, role strain, or sense of mastery.
These three factors: stressors (A), resources (B), and
perceptions © combine to create a potential mental/physical
health crisis (X) which can result in varying degrees of
disruptiveness or incapacity within the family system. In
this model, interventions target A, B, or C variables and
can be measured using self-report instruments or diagnostic

assessments.

The stressor (A) in this study occurs when an
individual has suffered a stroke and is dependent in one or
more ADL, IADL, HCA, or cognitive functioning. This event
initiates the caregiver-care recipient dyad and requires the
caregiver to rely on personal resources (B) in order to cope
with stroke related disabilities in home care of the
patient. The caregiver’s perception of the situation © can
be assessed in terms of the level of preparedness for
caregiving. The caregiver reaction and proneness for a
crisis situation (X) is influenced by the degree to which a
caregiver feels prepared. The current conceptual model
equates high or low levels of preparedness with role stress
and ability to cope. If a caregivers preparedness if high,
there is less stress and lower potential for a
mental/physical health crisis for the caregiver. In
contrast, if preparedness is low the potential is greater
that the caregiver may experience increased levels of stress
which could result in crisis and negatively affect the
caregiving situation. This study will concentrate on the
relationship between B (resources the caregiver brings to
the situation), and C (the perception of the caregiving
situation), both of which are influenced by A, B, and C. The
APN can target interventions directed at C to enhance family
resources or help the caregiver modify their subjective

perception of the situation.

REVIEW OF LI TERATURE

Research studies over the past decade using samples of
caregivers have shown that families play a substantial role
in providing care for relatives at home. Although
researchers have recognized positive aspects of caregiving,
most studies report that caregivers experience negative
effects on their emotional and physical health, personal and
social life, and financial resources (Biegel et al, 1991,
chap. 1; Boland & Sims, 1996; Silliman, Fletcher, Earp, &
Wagner, 1986; Wright, Clipp & George, 1992). A large body of
literature exists about caregivers of persons with
Alzheimer's disease and cancer. This literature has become
the model for caregiver studies in other population groups.
In recent years, more studies have been published that
address caregiving in relation to individuals who have had a
stroke (Bishop & Evans, 1995; Braithwaite & McGown, 1993;
Davis & Grant, 1994; Grant, 1996; McLean, Roper-Hall, Mayer,
& Main, 1991; Tyman, 1994; Williams, 1994). As the American
population ages and the number of individuals who survive a
stroke increases, there is a need to study specific
caregiving issues associated with stroke. Little research
has been done to describe the caregiving experience in
relation to caregiver preparedness. Even less information
exists on caregiver and care recipient characteristics that
help to identify variation in level of preparedness. The

following sections review pertinent literature found on

10

family caregivers, caregiver preparedness, and stroke
survivors functional limitations.
E .1 2 .

Family caregivers have always played an important role
in providing care for family members discharged from the
hospital. Barnes and Oglesby (1992) estimated that 80% of
health care for the elderly is being provided by family
members. Stone, Cafferata and Sangl (1987) developed a
comprehensive national profile of caregivers of the frail
elderly. Major caregiver characteristics were identified in
this classic study that compiled data from the 1982 National
Long-Term Care Survey (LTC) and Informal Caregivers Survey
(ICS). The majority (72%) of caregivers were women, adult
daughters comprised 29% and wives 23% of all caregivers in
the population studied. Male caregivers accounted for 28% of
the population in this study, with husbands comprising 13%
and sons only 8%. Although the average caregiver age was
57.3 years, roughly one-third were over age 65. Further
analysis indicated that three-quarters of the caregivers and
care recipients shared living arrangements. Another
important finding indicated that spouse caregivers tended to
provide care alone or received assistance from unpaid
helpers. Only 10% of caregivers received assistance from
paid formal care helpers and this was reserved for the most
severely impaired elderly. More than half of caregivers

reported lowered incomes due to the caregiver-care recipient

ll

dyad. The study identified competing familial obligations
and work conflict as two important areas of caregiver
strain. With respect to employment, 20% of all caregivers
reported having to alter their work schedules in order to
fulfill caregiver obligations. Wives and daughters were more
likely to rearrange their schedules to accommodate caregiver
demands than husbands or sons. Another important finding was
the observation that the most frequent type of caregiver
assistance entailed shopping and household tasks (80.6%) and
transportation (86.2%). Assistance with personal hygiene,
indoor mobility, medication administration, and help with
financial matters were reported by one-half of the
caregivers.

E .1 : . E E! l E .

Research studies on caregivers of stroke survivors are
limited. Some investigators have addressed the physical
impact stroke caregivers experience in their new role. Other
investigators have examined caregivers’ psychological and
emotional well-being and coping abilities. There are a few
studies that have focused on caregivers’ perceived
educational wants and needs for home care. However, no
studies were found that specifically address caregivers'
perceived level of preparedness in caring for a person who
has had a stroke.

Grant (1996) conducted a qualitative study to explore

home care problems experienced by stroke survivors and their

12

family caregivers. A total of ten caregiver-stroke survivor
dyads were recruited for this study. Selection criteria
included first time stroke patients who were no more than
four months post-stroke. Caregivers and stroke survivors
were recruited from an acute care hospital immediately
before discharge, from a rehabilitation setting or from an
outpatient clinic. Nine out of ten of these family
caregivers were female from 32 to 68 years old. Four major
problems were identified from the data: loss of the stroke
survivor’s familiar identity, managing ADL's, seeking and
mobilizing tangible services, and obtaining emotional/social
support. The most common home care problems related to the
stroke survivors are functional and cognitive losses.
Caregivers cite problems with bathing, dressing,
transferring, walking, and feeding. Family caregivers also
cite frustration with the emotional losses associated with
the stroke. One caregiver stated, “She does nothing but sit
in that chair . . . She is lost” (p. 896). Caregivers cite
problems with obtaining equipment, supplies, and financial
assistance. “The doctor said for me to have a walking stick,
but my insurance ran out” (p. 897), was reported by one
caregiver. Another caregiver reported, “the insurance
company doesn’t pay for outpatient speech . . . So that is
something I have to think about - his expenses” (p. 897).
The central theme that emerged from this study is that

caregivers experience a variety of problems in the

13

transition from acute care to home care. Development of
early intervention strategies to assist the family caregiver
in mobilizing resources may increase their subjective
feeling of preparedness in dealing with the multiple
stressors that they are confronted with once they are in the
caregiver role.

A pilot study by McLean, Roper-Hall, Mayer, and Main
(1991) examined the service needs of stroke survivors and
their family caregivers. The sample for this study consisted
of 20 stroke survivors and their caregivers who were
interviewed using the Clifton Assessment Procedure for the
Elderly. This tool was used to assess the physical
disability level of the stroke survivor. The Hospital
Anxiety and Depression Scale was used to assess anxiety and
depression. The reliability and validity of these tools were
not reported. The stroke survivors in this study consisted
of 16 females and 4 males with mean ages of 78 and 69
respectively. The majority of caregivers were female (15)
with remainder males (5), their mean ages were 59 and 52
respectively. Although the subjects consisted of both first
time stroke and established stroke patients, it was not
stated as to how long after the stroke the interviews were
conducted. None of the caregivers worked full-time, three
were employed part-time and two had reduced their hours in
order to devote more time to their caregiving role. McLean

et al. (1991) found that caregivers identified several areas

14

of unmet needs. Seventy-five percent (15) of all caregivers
felt they needed some assistance with physical care needs.
However, only 20% received the help they required and most
were unaware of the availability of social services or
different aids available. Well over half the caregivers in
this study showed a high need for personal-emotional advice
in dealing with the stroke survivors disabilities and
dependencies produced. Despite the seriousness of the
disease, most caregivers felt poorly informed about the
nature of the disease, recovery and treatment. All
caregivers felt more preparation was needed with respect to
information and for the acquisition of skills to perform
certain care tasks before taking on the caregiver role.
Vanetzian and Corrigan (1995) studied the educational
wants of family caregivers of stroke survivors. The study
compared responses of current and future caregivers. Future
caregivers consisted of individuals who anticipated
delivering home care to a family member who was currently
hospitalized. Current caregivers had been providing care for
one to six months. The investigators sought to compare four
categories of educational wants: assisting disabled adults,
maintaining caregiver well-being, maintaining family well-
being, and understanding health and human resources. The
convenience sample of 59 consisted of 27 current and 32
future family caregivers. Data were gathered by having

participants self-administer the Questionnaire of

15

Educational Wants (Cronbach’s alpha .86 to .98). Educational
wants were examined in relation to caregiver status group
and gender. There was a significant interaction between
caregiver status (current vs. future) and gender (male vs.
female) in the category of assisting disabled adults.
Current male caregivers and future female caregivers
assigned greatest importance to educational needs in this
category. Women who were planning to be caregivers in the
future rated all categories of educational wants as equally
important, whereas, current female caregivers assigned
highest importance to learning more about health and human
resources. Actual experience in caring for a disabled adult
allowed current caregivers to focus on educational wants as
their applicability became more apparent in their particular
situation. The investigators felt the findings indicated
that people will not truly know their learning needs until
they are actually in the caregiving situation, experience
serves as the foundation for future learning.

Current literature cited in this section reveals some
of the effects caregivers of stroke survivors may
experience. The psychological, physical, and financial
effects can have a profound impact on the caregiver-care
recipient dyad. Many of the studies addressed the caregivers
perceived wants and needs in helping them to deliver home
care more effectively. The ability to recognize caregivers

at greatest risk for feeling overwhelmed from a perceived

16

lack of preparedness for taking on the caregiver role will
aid the APN in developing specific intervention strategies
that will help caregivers understand and manage their
caregiving experience. The following section reviews several
articles specific to caregiver preparedness.
W

Families are increasingly involved in providing care to
disabled family members in the home following
hospitalization. The ability of caregivers to do their job
well is vitally important to the well-being of care receiver
and provider. Preparing caregivers for their new role
frequently begins while the patient is hospitalized.
Caregiver preparedness, as defined by Archbold et al.
(1990), refers to the caregiver's perception of how ready
they are to provide care. It does not assess the adequacy of
how well the care is provided. In this context, preparedness
should be measured prospectively. Perceived preparedness has
an anticipatory connotation because caregivers are assessing
their readiness before actually taking on the new role. This
definition of preparedness would indicate that, clinically,
what is most important for the care-recipient is the ability
of the caregiver to possess the necessary knowledge and
skills to provide care. However, the fact that caregivers
are responding before they have actual experience in the
role, may reflect a measurement of general confidence level

as opposed to perceived preparedness. Individuals who are

17

highly confident about dealing with life's problems in
general may report high levels of preparedness regardless of
the severity of a care-recipients disability or lack of
experience in providing care. Once the caregiving role is
undertaken and caregivers are confronted with the tasks and
stresses they did not anticipate, preparedness may become
more of an issue. In contrast, individuals who report low
levels of preparedness prior to taking on caregiving may
actually do very well in their new role as time goes on and
they gain experience in dealing with specific problems that
arise and as a result increase their confidence level. In
this context, a retrospective measurement of preparedness
may actually be measuring caregiver mastery or a general
feeling of competence in the caregiving role. The instrument
used in the current study was derived from a preparedness
measure developed by Archbold et a1. (1990) which focuses on
domain-specific preparedness as opposed to task-specific
preparedness. Measurement difficulties may result from the
fact that one measure alone doesn’t capture the full
dimensionality of preparedness. Caregiver perceptions may
need to be combined with observational studies to validate
the concept of preparedness.

Limited research exist specific to level of
preparedness and no articles were found specific to stroke

survivors. Following is a review of several articles

18

pertaining to caregiver preparedness and caregiver’s
educational needs.

Rusinak and Murphy (1995) investigated knowledge of
cancer care, perceptions of preparedness, and coping
strategies in elderly spousal caregivers. The sample
consisted of 30 spousal caregivers over age 65 who were
caring for a spouse over age 65 who was recently diagnosed
with cancer. Exact length of time since the caregiver role
had been taken on was not reported. Eighty-three percent of
the caregivers in this sample were female. A high school
education or higher was reported by 64% of caregivers and
29% reported a monthly income greater than $1,000. The
Quayhagen and Quayhagen COping Strategies Inventory (alpha
coefficients of .57 to .79), a measure of perceived level of
Preparedness Scale (alpha .72), and a scale developed by the
researcher to measure Knowledge and Skills in Cancer Care
(extensive face validity reported) were used to measure the
variables within this study. The investigators reported a
moderate level of preparedness and a high level of knowledge
and skills concerning cancer care. Predominant coping
strategies included “existential-growth” (controlling the
meaning of the situation), “helping-seeking”, and “problem-
solving” as used most often. Caregivers who were more
educated had higher levels of knowledge and skills but
perceived themselves as less prepared to assume the

caregiver role. Findings indicated that caregivers who

19

reported high levels of preparedness also reported that
their spouses had a chronic disease which required
caregiving assistance prior to the diagnosis of cancer.
Experience with caregiving in the past may have resulted in
high levels of confidence in dealing the anticipated changes
associated with a new diagnosis.

Weeks (1995) investigated the educational wants of 83
prospective family caregivers of newly disabled adults who
were currently receiving inpatient care. The caregivers in
this study were mostly female (63%), wives comprised 34% and
daughters 22%. In contrast, husbands accounted for 13% of
caregivers and sons only 6%. The majority had a high school
education or above and incomes greater than $20,000 per
year. Caregivers were asked to complete the Educational
Wants of Family Caregivers of Disabled Adults questionnaire
(Cronbach's alpha .86 to .98). Analysis of results revealed
the number one educational want of prospective caregivers
was to learn about assisting the disabled adult and learning
about health and human resources. Caregivers were especially
interested in learning ways to normalize the daily routine
for the disabled adult. Maintaining caregiver and family
well-being was only moderately important to the caregivers
in this study. It may be that the immediacy of the role to
be undertaken intensified the need to learn about resources

available to assist the caregiver.

20

In a similar study, Matthis (1996) examined if there
was a difference in how future, current and noncaregivers
rate importance of learning about caregiving tasks. Each
participant identified their caregiving involvement based on
the following categories: current caregiver (currently
providing assistance to a disabled adult), future caregiver
(expects to provide assistance in the near future to a
family), and noncaregiver (neither a current or future
caregiver). The length of time current caregivers had been
providing assistance or how long before future caregivers
would take on the role was not reported. Data for the study
was provided by 86 current caregivers (19.5%), 161 future
caregivers (36.5%) and 194 noncaregivers (43.9%). All
participants in this study were women. The researcher
developed a questionnaire derived from common caregiver
tasks identified in previous studies to measure caregiver
educational wants. Reliability of the questionnaire had
Cronbach's alphas of .86 to .98 for various categories. It
was reported that future caregivers affirmed that it was
very important for them to prepare and plan for family
caregiving tasks. Both current and future caregivers
attached greater importance to learning about caregiving
tasks than did noncaregivers. No significant difference was
found between future and current caregivers’ learning
interests. The findings in this study would indicate that

caregiver preparedness occurs largely as a response to the

21

current caregiving needs in a family and only takes on
significance when individuals are confronted with actually
taking on the caregiver role.

Archbold, Stewart, Greenlick, and Harvath (1990)
studied whether preparedness for caregiving was related to
lower levels of caregiver role strain. Role strain was
defined as the caregivers' perceived difficulty in
performing their role. The sample consisted of 78 caregiver-
care recipient dyads who participated in 6-week and 9-month
interviews after hospital discharge. The dominant diagnosis
of care recipients was not reported. Care recipients
required assistance in one or more of the following areas:
medications or injections; bathing or dressing; walking,
shopping, or errands; or household chores. Most caregivers
were female (62%), wives (19%) and daughters (21%), husbands
comprised 26% of the population and sons 6%. A.quarter (23%)
had completed high school and 39% had attended college.
Median income was between $15,000 and $24,000. Care
recipients’ average age was 78 and most (70%) were female.
Two structured interviews were conducted utilizing The
Family Caregiver Inventory. Measures of seven predictor
variables and nine measures of caregiver role strain are
included in the inventory. The reliability and validity for
this tool was not reported. This study did find that higher
levels of preparedness for caregiving were associated with

lower levels of caregiver role strain related to strain from

22

direct care, increased tension, and global strain. However,
caregiver strain related to economic burden was not reduced
by preparedness. At 6—weeks, caregiver preparedness was a
significant predictor of lower role strain for seven of nine
role strain measures as compared to only four of nine
measures at the 9-month analysis. This may indicate that
preparedness reflects caregiver competence and is a stronger
predictor of role strain during periods of transition than
during periods of greater stability in the caregiver role.
Interventions aimed at caregiver preparedness would need to
be applied during the early transition period in order to be
beneficial over time. As caregivers gain experience in their
role they also increase their confidence level in dealing
with problems.

A number of researchers have explored the needs and
wants of family caregivers in learning more about caregiving
tasks, but only a few studies specifically examined
caregiver preparedness. In addition, the studies reviewed in
this section have not dealt with caregivers of stroke
survivors. This population of caregivers needs to be
addressed separately in order to determine if the perceived
impact of caregiving is the same or different from other
groups. The following section will review literature
pertinent to the functional limitations of stroke survivors
in order to clarify the degree of disability and how it may

impact preparedness in caregivers.

23

E l' 1 I' 'l I' E S! l E .
Functional outcome following a stroke is important
because it impacts the quality of the patients' life and
influences discharge disposition to home or
institutionalization. The majority of research on stroke-
related disability have focused on functional level,
psychosocial functioning, burden on spouses, and
rehabilitation outcome. Most studies have followed patients
at 1-month, 6-months, and 1 year post-stroke. The literature
reports that 69% of stroke survivors perform ADL
independently and 80% are independently mobile, 70% have
significant losses related to their vocational and social
functioning (Johnson, Pearson & McDivitt, 1997). The
literature identifies the following patient characteristics
as adverse prognostic indicators of functional outcome:
prior history of stroke, older age, urinary and bowel
incontinence, and visuo-spatial deficits (Jongbloed, 1986).
Jorgenson et al. (1995) conducted a study that examined
outcome and time course of recovery in stroke. The sample
consisted of 1,197 patients who were enrolled in the
Copenhagen Stroke Study. Female stroke survivors comprised
54% of the sample and males 46%. Weekly examinations of
neurological deficits and ADL function were performed from
admission to end of rehabilitation, and at 6-months post-
stroke using the Scandinavian Neurological Stroke Scale

(SSS) and the Barthel Index (BI). The SSS evaluates level of

24

consciousness; eye movement; power in arm, hand and leg;
orientation; aphasia; facial paresis; and gait. The Barthel
Index (BI) evaluates 10 different functional abilities
(feeding, orientation/transfer, grooming, toileting,
bathing, walking, stair walking, dressing, bowel continence,
and bladder continence). The reliability and validity of
these tools were not reported. Discharge to home was
strongly linked to initial stroke severity, 93% had mild
strokes compared to 14% with very severe strokes. In
patients with mild stroke, 68% had no disability in ADL
function and 25% had only mild disability. Stroke survivors
who had severe disability initially did remarkably well, 84%
improved in ADL function after rehabilitation with 17%
reaching full function and 48% remaining only mildly
disabled. The greatest improvement in ADL functions occurred
in feeding, transfer/orientation, toilet use, staircase
walking, dressing, and bowel continence. Results of the time
course of recovery for stroke showed that the best
neurological outcome was achieved within 4.5 weeks in 80% of
the patients and within 11 weeks in 95% if patients. Best
ADL function was achieved within 6 weeks by 80% of patients.
Among all patients in this study, recovery from stroke was
mainly achieved within the first five months from onset. The
implications of this study in regard to caregiver

preparedness would indicate that preparedness may only be an

25

issue for caregivers of stroke survivors during the early
phase of the disability before improvements are achieved.
Silliman, Wagner, and Fletcher (1987) investigated the
social and functional consequences of stroke in elderly
patients. The sample consisted of 147 stroke patients, 83
(56%) male and 64 (44%) female. Their average age was 75
years. The majority suffered strokes which involved the left
(53%) or right (42%) cerebral hemisphere. This was a first
time stroke in 79% of the sample. At time of hospital
discharge 119 (82%) of the patients returned home while 27
(18%) were institutionalized. The investigators found
functional status to be the most powerful predictor of
discharge disposition following an acute hospital stay.
Discharge to home was strongly associated with functional
independence in ADL. At time of discharge, 52 (98%) of
patients independent in ADL returned home. The majority of
patients who were dependent in ADL 67 (70%) also returned
home as opposed to 26 (30%) who entered nursing homes. The
family caregiver interview covered six areas: attributes of
the caregiver and caregiving setting, services, quantity and
quality of social supports, health and psychosocial impact
of the experience on caregivers, and perceptions about the
caregiving process. Among stroke survivors remaining in the
home at time of follow-up, while only 36% were able to walk
independently, 74% could follow directions and 64% had no

speech deficits. In contrast, those patients residing in

26

nursing homes functioned poorly and frequently had speech
impairments. This research has shown that most elderly
patients return home after an acute stroke and remain there.
Persisting functional dependence in this population
indicates that attention should be focused on ways to
minimize the affects of stroke related disability on the
patient and caregiver.

Kotila, Waltimo, Niemi, Laaksonen, and Lempinen (1984)
developed a profile of neurological and neuropsychological
deficits among stroke survivors. The sample for this study
consisted of 154 patients, 70 (45%) women and 84 (55%) men,
who were alive one year after the stroke. There mean age was
61 years. The location of stroke was left hemisphere in 40%
and right hemisphere in 39%. Evaluations done at time of
hospital admission showed that 112 (73%) of patients
experienced hemiparesis, 132 (86%) coordination
disturbances, 55 (36%) dysphasia, 88 (57%) dysarthria, 20
(13%) dysphagia, and 45 (29%) incontinence of urine and/or
feces. Participants were evaluated at the time of hospital
admission, at 3-months and 12-months post-stroke.
Neuropsychological testing methods included the Wechsler
Adult Intelligence Scale, the Wechsler Memory Scale, and the
Benton Visual Retention Test. Emotional reactions were
assessed through use of Gainotti’s Systematic Observation
and Beck's Depression Inventory. ADL's included evaluation

of ambulation, self feeding, dressing, and personal hygiene.

27

The disability grading system range was: fully independent,
needs some help, needs much help, or totally disabled. The
reliability and validity of these tools were not reported.
The profile of neurological findings included: hemiparesis,
coordination disturbances, dysphasia, dysarthia, dysphagia,
and incontinence of urine and/or feces. There was no
difference found in patient outcomes between right and left
hemispheric lesion. All neurological deficits showed
improvement between acute stage and 3-months and this
improvement continued up to 12-months but to a lesser
degree. The profile of neuropsychological deficits included:
visuoperceptual; speech/language and aphasia; dyslexia,
dysgrafia, dyscalculia; impairment of intelligence;
impairment of memory; and depression. The frequencies of
neuropsychological deficits also showed improvement over
time. During the acute stage of stroke only 32% (50) of
patients were independent in ADL. At 3-months independence
increased to 62% (95) and at 12-months 68% (105) of patients
were fully independent in ADL’s. The profile of recovery
found that 69% (107) patients were living at home 3-months
after the stroke and 78% (120) were home after 12-months.
Hemiparesis, visuoperceptual deficits and impairment of
intelligence had the most significant influence on patient
outcomes. Patients without these deficits were more likely
to be independent in ADL’s and residing at home. Patients

who were depressed in the acute stage showed greater

28

dependence in ADL but after 3-months the depression
decreased and showed continued improvement at 12-month
follow-up. The initial depression may be associated with the
emotional crisis or grief reaction to a serious illness. The
implications from this study for caregiver preparedness may
suggest that it is during the acute stage of stroke and when
certain deficits are present that caregivers will need the
most support. Level of preparedness may only be an issue
early in the disease process.

In summary, the literature provides evidence of the
varying degrees of disability following stroke. Functional
outcome and discharge disposition appear to be influenced by
stroke severity. The majority of stroke survivors discharged
to home were classified as having suffered a mild stroke
with minimal or no alteration in ability to perform.ADL. The
transition to home may be more difficult for patients and
their caregivers when certain disabilities are present.
Studies indicate that certain patient characteristics such
as: visuoperceptual deficits, urinary and bowel
incontinence, depression, impairment of intelligence and
memory appear to impede functional recovery and is
associated with poorer outcome. The greatest degree of
functional recovery appears to occur within the first five
to 6-months after which no significant improvement seems to
occur. Depressive disorders among stroke patients receive

less attention than physical disabilities but can

29

significantly impact quality of life for the patient. Level
of preparedness among caregivers may be a multidimensional
concept given the fact that there is such a variety of
functional disabilities associated with stroke that are
influenced by area of brain affected.
METHODS

To assess levels of preparedness two outcome variables
representing different dimensions of preparedness were
employed. Independent variables will include caregiver
characteristics: age, gender, relationship to patient,
educational level, and employment; and care-recipient
characteristics (age, gender) and functional limitations:
ADL's (bathing, dressing, eating, toileting, walking),
IADL's (cooking, housework, transportation, shopping, money
management), HCA15 (oral medication, injections, incontinent
of urine and/or stool, exercises/physical therapy), and
cognitive deficits (problems expressing thoughts, confused,
forgetful, uncooperative, depressed/tearful). Following is a
description of the design of the study and how these
variables will be measured.

Research Design

This study relies on secondary analysis of data from a
three wave panel study. The original study design was a
panel study which followed caregivers and patients

discharged from the hospital with new care demands. The

30

focus of this study was on the beginning or onset of the
caregiving role.
Sample and Data Collection

The sample for this study was derived from the sample
utilized in the study “Caregiver Responses to Managing
Elderly Patients at Home”, funded by the National Institute
on Aging (Grant #2, R01 AGO6584-04), Charles W. Given,
principal investigator, Michigan State University.

A total of 73 stroke patients were identified but data
on preparedness was available on only 61 caregivers who
responded to the questionnaire. Only Wave I data was
utilized in the current study which was collected 6—7 weeks
after discharge from the hospital. Information on
preparedness was collected from caregivers through self-
report questionnaires. Telephone interviews were conducted
to collect data on caregiver reports of patients ADL's,
IADL’s, HCA’s, and cognitive deficits.

The original study is based on a convenience sample of
628 patients recruited from 27 acute care hospitals in
Michigan. Recruitment of participants was done by nurses,
discharge planners, and medical students. Eligibility
criteria of the original study included: 1) patients 55
years of age or older; 2) patients required assistance with
at least one new ADL, IADL, or medical care task following
hospital discharge; 3) had identified a primary caregiver.

Within two weeks following hospital discharge, care-

31

recipients and caregivers were contacted and screened for
eligibility. All eligible participants were then scheduled
for one intake interview (Wave I) to occur approximately ten
days later. Data was collected by trained telephone
interviewers, using a written script and from a self-
administered questionnaire. In addition to the eligibility
criteria of the original study, the current study employed
the following additional criterion: the care-recipient had
to be classified as having had a stroke. Identification of
stroke patients was based on caregiver reports. A stroke is
defined as the disabilities that result from an injury to a
blood vessel(s) in the brain. The injury to a blood vessel
can occur as the result of partial or complete occlusion or
hemorrhage in the brain. An ischemic stroke can be due to a
thrombus or embolism, whereas, a hemorrhagic stroke can
occur from arteriovenous malformation (AVM) or an aneurysm
(subarachnoid hemorrhage), (Hickey, 1997). In this study,
patients were classified as having a stroke based upon the
hospital discharge diagnosis and confirmed through the
caregiver interview. The generic classification of stroke
fails to recognize the varying degrees of stroke. Therefore,
a range of functional limitation measures of the patient
will be utilized to help describe the severity of stroke.
Protection of Human Rights
All methods to protect human rights that were utilized

in the original study are maintained. Anonymity is

32

maintained due to lack of access to any identifiers linking
study participants with data. All subjects will have their
anonymity safeguarded through the assignment of an
identification (ID) number. Signed consents were obtained by
the original investigators of the study. There were no
identified risks to the patient-caregiver dyad in the
original study, which remains true for this secondary
analysis. Approval for this study has been received from the
University Committee on Research Involving Human Subjects at
Michigan State University (see Appendix C).
Operational Definition of Variables

Preparedness

The caregiver preparedness scale assesses the feelings
of how ready caregivers believe they are to take on the
tasks of caregiving. Archbold et al. (1990) developed the
original scale which consisted of five items to assess
perceived level of preparedness. Response options were based
on a 5-point Likert scale (0=not at all prepared to 4=very
well prepared). Given and Given (1994) utilized a variation
of the instrument for their study of “Caregiver Responses to
Managing Elderly Patients at Home”. In this version, each
item employed a 4-point Likert-type scale, ranging from not
at all prepared to very well prepared (1=not at all
prepared, 2=not too well prepared, 3=pretty well prepared,
and 4=very well prepared). This same questionnaire was

employed in two other studies to address preparedness issues

33

for cancer caregivers. Cronbach’s alpha for the total
preparedness scale in the community-based cancer study
(Given & Given, 1991) was .92 (N=154) and in the rural
cancer study (Given & Given, 1992) it was .93 (N=141). It
should be emphasized that caregiver preparedness in caring
for stroke survivors recently discharged from an acute care
hospital may differ from preparedness issues facing cancer
caregivers. In the current study, to assess levels of
preparedness a previously developed 9—item scale that
represented different dimensions of preparedness was used to
collect data from caregivers in the original study.
Reliability analysis was performed to explore if all
preparedness items formed a unidirectional scale. The first
reliability analysis included all 9-items on the
preparedness scale (PREP1=physical needs, PREP2=emotional
needs, PREP3=formal service needs, PREP4=medical-nursing
treatments, PREP5=managing finances, PREP6=planning for
activities, PREP7=managing behavior problems, PREP8=managing
equipment, and PREP9=how well prepared overall), this
resulted in a Cronbach's alpha of .93. Preparedness subscale
PREPS (managing finances) was the only item that did not
correlate highly with the other subscales. Removing item
PREP5 and treating it as a separate dimension of
preparedness resulted in a Cronbach's alpha of .94. Based on
the reliability analysis it was decided to explore a model

of preparedness with two separate dimensions: Preparedness

34

Scale PREPAREZ (without PREP5) and PREPS (managing
finances). Predictor variables were selected, based on
literature review, that included caregiver and care-
recipient characteristics thought to influence preparedness.
E .1 2 .

A.family caregiver is defined based on the relationship
to the patient. In the current study, these categories are
based on self reports during the interview and defined as
spouse vs. nonspouse. Family relationship was coded as
“0”=other and “1”=spouse.

E l' 1 I' 'l I'

Care-recipients' functional limitations will be based
on the caregivers' interview responses which indicate
whether or not patients need assistance with ADL’s, IADL's,
and medical care tasks. The measures of functional
limitations are counts of dependencies in: ADL’s (bathing,
dressing, eating, toileting, and walking); IADL’s (cooking,
housework, transportation, shopping, and money management);
HCA’s (oral medications, injections, incontinent of urine
and/or stool, exercises/physical therapy). In addition,
cognitive deficits (as reported by the caregiver) provide
additional assessments of care-recipients’ functioning.
Items include: problems expressing thoughts, confused,
forgetful, uncooperative, and depressed/tearful. Caregiver
response options for the cognitive deficit scale were based

on how often certain behaviors were displayed and ranged

35

from 1=not at all to 4=always. Cronbach's alpha for this
scale was .84.
W

Caregiver and care-recipient age will be based on the
caregiver interview responses which indicate the age of both
persons in years. Gender is also based on a simple interview
response of “male" or “female”. Caregiver gender was coded
as “0”=male and “l”=female.
Warns

Educational level of caregiver is defined as: attended
grade school, attended high school, graduated high school,
attended college, graduated college, some graduate or
professional school. The education variable was converted
into an interval-level variable by recoding the categories
into approximate years of schooling (“6”= attended grade
school, “10”=attended high school, “12”= graduated high
school, “14”=attended college, “16”= graduated college, and
“18”=some graduate or professional).
Warns

Employment status will be defined as full time, part
time or no employment outside the home. Caregiver current
employment status was coded as “0”=not employed and
“1”=employed.

Data Analysis
The dependent variables in this study are the two

dimensions of caregiver preparedness. The independent

36

variables are caregiver and care-recipient characteristics.
Data analysis has been performed through use of SPSS 8.0 for
desktop computers. Frequency, means and percentages will be
employed to describe sample characteristics and to provide
information about the distribution of research variables in
the study.

To answer Question 1 regarding caregiver preparedness,
frequency distributions and summary statistics for the
preparedness items and scales are shown. To answer Questions
2 and 3 regarding caregiver and care-recipient
characteristics that may predict variation in perceived
level of preparedness, multiple regression analysis was
performed with all independent variables coded as either
continuous or dichotomous variables.

RESULTS
Description of the Sample

Table 1 describes the caregivers in this sample. The
majority of caregivers were female (n=55, 90.2%) and
Caucasian/White (3:50, 82%). The caregiver mean age was 57.4
years, with a range of 21 to 84 years. The majority of
caregivers (n=44, 72.1%) were not currently employed. The
remaining caregivers were either employed full or part-time,
laid off, in between jobs, or not employed for pay. One
caregiver took a leave of absence and one had to quit work
in order to provide care. The median income for caregivers

was $30,749.64 with a range of $3,000 to $62,500. The

37

Table 1

Frequencies and Percentages of Sample Caregiver Demographics
(n861)

 

 

variable Frequency Percent
a 2
Gender
Male 6 9.8
Female 55 90.2
Age
39 or < 5 8.2
40-49 11 18.0
50-59 14 23.0
60-69 21 34.4
70-79 8 13.1
80 or > 2 3.3
Race
Caucasian/White 50 82.0
Other 11 18.0
Employment Status
Employed 17 27.9
Not employed 44 72.1
Income
$9,999 or < 6 9.8
$10,000-S19,999 10 16.4
$20,000-$29,999 15 24.6
$30,000-S39,999 8 13.1
$40,000-$49,999 7 11.5
$50,000 or > 10 16.4
Missing 5 8.2
Education
Grade school or less 4 6.6
Some high school 19 31.1
Graduated high school 17 27.9
Some college 12 19.7
Graduated college 8 13.1
Some graduate/professional 1 1.6

 

38

majority of caregivers (n=38, 62.3%) had a high school
education or higher. Spouses comprised the majority (n=35,
57.4%) of caregivers with daughter, daughter in law, and
granddaughter accounting for the remainder. The majority of
caregivers were married (3:51, 83.6%) and the remaining were
either single, divorced, or widowed.

Table 2 contains the patient demographic
characteristics in regard to gender, age and living
arrangement. The majority of patients in this sample were
male (n=34, 55.7%) and lived with the caregiver (n=56,
91.8%). The mean age of the patients is 71.4 years, with a

range of 55 to 91 years.

 

 

Table 2.
‘0. ‘0 ‘ «to " ‘9 -_0.‘ o - .0 ‘ '._ ‘0 .‘1100. .00
11116.1).
Variable Frequency Percent
11 3.
Gender
Male 34 55.7
Female 27 44.3
Age
50-59 7 11.5
60-69 20 32.8
70—79 22 36.1
80 or > 12 19.7
Living Arrangement
Together 56 91.8
Apart 5 8.2

 

39

Table 3 offers information on the functional status of
the patient as reported by the caregiver. Functional status
was determined by dependencies in ADL's, IADL’s, HCA’s, and
cognitive functioning. The average number of dependencies in
ADL's was 3.7 out of 6, in IADL’s it was 5.6 out of 6, and
HCA's 3.2 out of 8. The majority of patients experienced
none or only occasional problems with confusion (ne43,
70.5%) or displayed unpleasant behavior (n=50, 82%).

Research Questions

The primary purpose of this study was to examine
factors that may influence a caregivers perceived level of
preparedness. The first step is to describe the distribution
of preparedness scores in the sample. The next step is to
examine the relationship of various predictor variables to
preparedness through multiple regression analysis.

To answer research Question 1, how well prepared
caregivers feel in performing domain specific tasks,
responses were taken from the original questionnaire and
frequencies and percent were obtained. Table 4 displays the
caregiver responses for each item. Table 5 shows the summary
measures for the preparedness scale PREPAREZ (Cronbach's
alpha .94) and the separate item PREPS (managing finances).
It is evident from all these individual items that well over
half of all caregivers in this study reported feeling

“pretty well prepared” to “very well prepared”.

40

Table 3

Patient Dependencies in Number of ADL's, IADL’s, Health Care
.Activities (HCA’s), and Cognitive Deficits by Frequencies as
Rated byCaregiver (n=61)

 

variable Mean Frequency Percent
x n %

 

Q of Dependencies 3.7

in ADL’s
O 9 14.8
1 9 14.8
2 4 6.6
3 3 4.9
4 4 6.6
5 9 14.8
6 23 37.7

0 of Dependencies 5.6

in IADL’s
0 0 0.0
1 1 1.6
2 1 1.6
3 2 3.3
4 1 1.6
5 7 11.5
6 49 80.3

0 of Dependencies 3.2

in HCA’s
0 1 1.6
1 7 11.5
2 18 29.5
3 14 23.0
4 7 11.5
5 8 13.1
6 3 4.9
7 2 3.3
8 1 1.6

Cognitive Deficits
Confusion 1.7
1.00-1.99 43 70.5
2.00-2.99 14 23.0
3.00-3.99 3 4.9
4.00 1 1.6
Unpleasantness 1.6
1.00-1.99 50 82.0
2.00-2.99 11 18.0

 

41

Table 4

Frequencies and Percentgges of Sample Caregivers Perceived Level of
Preparedness for all Items on the Preparedness Scale (n-61)

 

Items

Not at all
Prepared
freq./%

Not too well
Prepared
freq./%

Pretty well
Prepared

freq./%

very well
Prepared

freq./%

 

PREPI
physical
needs

PREPZ
emotional
needs

PRIP3
formal
service
needs
(missing 1)

PRIPl
med-nurs
needs
(missing 1)

JEREPS
ananaging
liinances

IRBEPG

lalan for
metivi ties
(missing 2)

PREP?
managing
behavior
problems
(missing 3)

PREPB
manage
equipment
(missing 1)

PREP9
how well

prepared
overall

8(13.1)

11(18.0)

9(14.8)

9(14.8)

3(4.9)

6(9.8)

8(13.1)

7(11.5)

2(3.3)

5(8.2)

11(18.0)

13(21.3)

4(6.6)

4(6.6)

5(8.2)

15(24.6)

7(11.5)

8(13.1)

23(37.7)

29(47.

19(31.

22(36.

27(44.

29(47.

22(36.

25(41.

28(45.

5)

1)

1)

3)

5)

1)

O)

9)

25(41.0)

10(16.

19(31.

25(41.

27(44.

19(31.

13(21.

21(34.

23(37.

4)

1)

0)

3)

1)

3)

3)

7)

 

42

Table 5

 

 

Scale Mean Median Standard Minimum Maximum
x Deviation Value Value

PREPARED2 2.9 3.0 .82 1 4

PREPS 3.3 3.0 .80 1 4

(managing

finances)

 

To answer research Questions 2 and 3, multiple
regression analyses were carried out to examine the combined
effects of various predictor variables on the two measures
of preparedness. Two regression analyses were run. The
first with Preparedness Scale PREPARE2 (without PREP5) as
the dependent variable and the second with PREPS (managing
finances) as the dependent variable. The set of independent
variables were the same in each case and included: caregiver
age, gender, relationship status, education, employment;
patient ADL's, IADL'S, HCA'S, patient mental confusion, and
patient unpleasant/bothersome behavior. Table 6 describes
the regression analysis with Preparedness Scale PREPARE2 as
the dependent variable and Table 7 the analysis of PREPS
(managing finances) with resulting scores for b, beta, t,

and the overall significance level of the F-test.

43

Table 6

iMultiple Regression to Determine Influence of Predictor
‘variables on Caregivers Perceived Level of Preparedness

(n-61)

 

 

Predictor variable b Beta t Sig.
Caregiver Age -.0099 -.158 -l.081 .285
Caregiver Gender .6000 .221 1.654 .104
O-male
I-female
Relationship Status -.1500 -.092 -0.683 .497
O-other
1-spouse
Education .0197 .065 0.504 .616
Employment -.0231 -.013 -0.099 .921
O-not employed
1-employed
Patient ADL’s -.0112 -.033 -O.199 .843
Patient IADL’s .1360 .168 1.161 .251
Patient HCA's .0842 .177 1.169 .248
Patient Confused .1180 .098 0.737 .464
Patient Unpleasant* -.9600 -.456 -3.412 .001

 

*Overall significance level of F-test: .032

44

Table 7

Multiple Regression to Determine Influence of Predictor

variables on Caregivers Perceived Level of Preparedness in

Managing Finances(n=61)

 

 

 

Predictor variable b Beta t Sig.
Caregiver Age .0149 .248 -1.543 .129
Caregiver Gender .0732 .028 0.210 .834
0-male
1=female
Relationship Status* .5140 .321 -2.442 .018
0=other
1-spouse
Education .0384 .129 0.923 .360
Employment .0561 .032 -0.251 .802
O-not employed
Icemployed
Patient ADL's .0158 .047 -0.264 .793
Patient IADL's .0461 .058 0.369 .713
Patient HCA's .0727 .156 -0.949 .347
Patient Confused .1660 .142 -0.981 .331
Patient Unpleasant .0216 .010 0.072 .943
*Overall significance level of F-test: .090

45

Regression analysis of PREPARE2 showed no statistically
significant (p>.05) relationship of any predictor variables
with overall level of preparedness, except for one: patient
unpleasant/bothersome behavior which resulted in a
significance level of p=.001 (B=-.456, =-3.412). Caregivers
felt less prepared as patients displayed more
unpleasant/bothersome behaviors.

AIPREPS (managing finances) showed no statistically
significant (p>.05) relationship to the predictor variables
except for family relationship which had a significance
level of p=.018 (B=-.321, t=-2.442). Preparedness to deal
with financial matters was lower for spouse than nonspouse
caregivers.

DISCUSSION

In this study, a total of 61 caregiver interviews were
reviewed to determine reports of caregiver preparedness in
home care of stroke survivors. As reported in the literature
(NSA, 1994; DHHS, 1995; Stone, Cafferata, and Sangl, 1987;
and Weeks, 1995), caregivers were primarily spouses and
female, and stroke patients were predominantly male and over
the age of 70.

.Although patients tended to have high levels of
dependencies, the majority of caregivers in this study
reported feeling “pretty well prepared” to “very well
prepared” on all 9-items of the preparedness scale. This may

be attributed to several factors. First, these caregivers

46

were interviewed within 6-7 weeks following hospital
discharge. It may be that this group of caregivers had not
yet had time to fully experience all aspects of the
caregiver role. Novice caregivers may be overly optimistic
in dealing with a new caregiving role. Second, in the early
stages of the caregiver role various support persons
(family, friends, or home care workers) may be more readily
available and willing to provide assistance to the'
caregivers and this may result in greater feelings of
preparedness. Third, the majority of caregivers were elderly
women for whom the caregiving role was typically part of
their socialization. Fourth, it was not known whether this
was a first time caregiver experience and previous
experience could account for feelings of greater
preparedness.

Most of the predictor variables seemed to have no
effect on the perceived levels of preparedness. Principally,
there are four possible explanations: (1) these variables
do, indeed, have no effect on levels of preparedness; (2)
the sample size was too small to show significant effects;
(3) the outcome variables (measures of preparedness) were
highly skewed, i.e., they showed very little variation to
begin with; and (4) the measures lack validity for assessing
relevant preparedness dimensions. Still, two predictor

variables do seem to affect caregivers perceived levels of

47

preparedness: unpleasant patient behavior and relationship
status.

The preparedness scale used in this study measured
different types of domain specific activities yet the
majority of caregivers reported doing all care activities
well. Few caregivers reported dealing well with patients
physical care needs yet having problems with emotional care
needs or obtaining formal services. Only 61 caregivers out
of the 73 stroke patients identified completed the
preparedness questionnaire, it is possible that the 12
caregivers who choose not to reply were feeling too
overwhelmed to deal with the issues confronting them. It may
be more appropriate to develop a knowledge/skill scale and
than validate the caregivers perceptions through a
observational study. This may give a more accurate
assessment of preparedness than self-report questionnaires
and phone interviews.

As reported in previous studies (Jorgenson et al, 1995;
Kotial et al, 1984; and Silliman, Wagner, & Fletcher, 1987),
most individuals, who have had a stroke, experience more
physical disabilities than cognitive deficits. The ability
of most patients in this study to comprehend and
communicate, either verbally or nonverbally, may result in a
caregiver feeling more prepared to handle their new role.
.Although a patients’ unpleasant or bothersome behavior

proved significant in caregiver preparedness, the small

48

convenience sample in this study does not allow findings to
be generalized. It would, however, make sense that as a
patients behavior becomes more unpleasant or difficult to
deal with, a caregiver would feel less prepared in their
ability to carry out their role.

The finding that preparedness to deal with financial
matters was lower for spouse than nonspouse caregivers
cannot be generalized due to sample size and possible
confounding with gender. As stated previously, 90.2% of the
caregiver sample were female with a mean age of 57.4 years
and lack of preparedness to deal with financial matters
could be attributed to the socialization of this generation
of caregivers.

In utilizing an adaptation of the ABCX model to look at
the outcomes or findings of this study in relation to
perceived levels of preparedness, one can see that a number
of variables could potentially impact preparedness. The high
level of preparedness reported by the caregivers in this
study demonstrates that caregivers were coping with their
new role. However, the selected predictor variables did not
appear to account for this finding. The results of this
study are unable to support the proposed conceptual model
that the predictor variables selected for analysis influence
a caregivers perceived level of preparedness. Because this

relationship was not statistically significant, the Null

49

hypothesis which states that there is no actual relationship
between variables cannot be rejected.
Limitations

A number of limitations are acknowledged in this study.
The findings in this study should be viewed as
representative of this group of caregivers and should not be
generalized because of the small sample size and the nature
of the sample as convenience sample. The rate of
preparedness among this group of caregivers may be explained
in part by sample characteristics. For example, a majority
were elderly, female and Caucasian. Further, the findings
describe a particular population at a particular point in
time. Caregivers may feel different at 6-7 weeks post-
discharge from hospital versus 6-months later and this may
result in a different concept of preparedness. A further
limitation of this study is that stroke is defined in
generic terms based on functional limitation. A right-sided
vs. left-sided stroke can have very different clinical
presentations and resulting deficits requiring different
approaches to care delivery and this may affect caregiver
preparedness. Also, it is not known if the patients or
caregivers had participated in any type of rehabilitation
program prior to interview and this could potentially affect
how well a caregiver feels about taking on the caregiving
role. Two predictor variables, caregiver income and social

assistance, were not included in this study and could very

50

likely influence preparedness. Managing finances obviously
depends on one's income and how much help a caregiver
expects to receive or is actually receiving may influence
preparedness.

The adaptation of the ABCX model used as the conceptual
framework for this study had advantages and disadvantages.
The model allowed for a clear depiction of the events which
may produce a caregiving situation. From this line of events
one can see how various factors can influence preparedness.
However, the proposed model does not fully explain
preparedness as a multidimensional situation influenced by
factors such as formal and informal support systems, coping
skills, living arrangement, household size, financial
status, patient comorbid conditions, caregiver mental and
physical health, competing role obligations, and other life
stressors that may influence the caregiving situation.

There is also a need for methodological improvement in
both the conceptualization and measurement of preparedness.
The predominant focus of caregiver literature has been on
burden. Preparedness is a relatively new concept with
limited literature available on the subject. As stated
previously, preparedness has an anticipatory connotation and
should really be assessed before a caregiver takes on the
caregiving role. The concept of preparedness is a question
of whether preparedness precedes or follows involvement. For

example, a caregiver may be taught how to assist a patient

51

with walking but still report they don't feel prepared to do
it. However, once the caregiver is in the home and
confronted with the situation, new ways to assist with
walking emerge by trial and error and with each act
caregiver performance increases. Central to the issue of
preparedness is how good the care is that is being delivered
to the care-recipient. If a caregiver reports high levels of
preparedness but delivers poor care the outcome for the
care-recipient will be negatively affected. Once an
individual has actually moved into the caregiving role, such
as in the current study, we may in effect be testing
caregiving mastery rather than preparedness. A.caregiver’s
perception of how well they are performing (mastery), may
reflect a general feeling of competence in the role.
Assessing preparedness may require a different
approach. Phone interviews and self-report questionnaires
may not be the best way to evaluate preparedness. This
approach permits only one viewpoint, that of the caregiver,
and does not allow for validation of responses. Caregiver
rating of a patients cognitive status is very subjective and
problematic in terms of accuracy. Instead, presenting a
caregiver with a specific caregiving situation and asking
how they would handle it may yield more useful information
on ways to describe and assess preparedness. Another way to
enhance evaluation of preparedness is to develop measures in

which items refer to specific caregiving tasks and problems

52

rather than to global domains of caregiving. This type of
instrument may allow for more sensitivity to change and
allow researchers to describe, identify, and test different
models of preparedness. Development of a knowledge or skill
scale and measurement of objective care-recipient outcomes
could yield useful information about preparedness. This
would allow an interesting analysis of whether confidence or
judgment correlates with knowledge and how prepared
caregivers report they feel.

The concept of preparedness is important to understand
as part of the multidimensional concept of family
caregiving. Although the concept of preparedness, as
currently defined, takes on meaning before the caregiving
role has been taken on, there may be times when the advanced
practice nurse can utilize the concept to assist caregivers
in their role. For example, Robinson and Price (1982) found
that there is an early and late stage of depression among
stroke patients, the caregiver could be prepared for this
possibility through anticipatory guidance which could result
in earlier recognition and treatment for the patient and
thus enhance and maintain the caregiver role.

Implications for Future Research

The literature review, as delineated previously,
revealed little research on caregiver preparedness in the
stroke population. Determining predictors of perceived

levels of preparedness among stroke caregivers is difficult

53

with such a small sample size (3:61). However, this study
does produce several possible directions for future
research.

Future studies should incorporate a knowledge/skill
scale and objective patient outcome measures to assess
preparedness. This would allow for not only assessment of
knowledge and skills required by the caregiver, but also the
evaluation of how well the care is being given. Missing in
current caregiver literature is an assessment of the care
recipients opinion of the adequacy of care given, this would
fit nicely in a study of caregiver preparedness.

Additional studies should examine formal and informal
support systems, income level, gender, and prior caregiver
experience for their possible effects on preparedness. As
mentioned previously, the sample in this study was composed
of novice caregivers at the beginning of the caregiver role.
Utilizing a larger sample of caregivers, who are dealing
with a new caregiving situation, to see if similar results
are produced would allow for more generalizability of
findings. Studying these variables will help develop a
better picture of the caregiver who is well prepared versus
one who feels ill-prepared to take on this role, allowing
researchers to recommend which caregivers may require
interventions in order to sustain the caregiver role.

This study focused on caregivers at a particular point

in time. Longitudinal studies are needed to examine the

54

changes that occur in preparedness over time and in relation
to illness stages. Better instruments are also needed to
evaluate preparedness, measures that frame items based on
specific caregiving tasks or problems rather than global
domains of caregiving would enhance sensitivity to change.
In addition, future research should incorporate more than
one measure to capture dimensions of preparedness which
would add to a better understanding of what preparedness
really means.

In the current study, only 61 out of 73 stroke
caregivers completed and returned the questionnaire on
caregiver preparedness. Future studies should compare those
who remain in a study with those who drop out to detect
reasons for attrition. The twelve caregivers who did not
complete the preparedness questionnaire may have been too
overwhelmed and experiencing too much stress to continue to
participate. This may be the group of caregivers where the
APN would need to target interventions.

A qualitative research design that is exploratory and
investigative in nature may also be of benefit in
discovering what stroke caregivers felt least prepared to
handle once the caregiving role has begun. The studies
reviewed that examined caregiver needs and wants provide
important insight into what preparation may be needed prior
to the caregiver role being enacted. Unstructured

qualitative approaches will assist the investigator in

55

understanding environmental influences on caregiving and
decision-making processes.

It is clear that further research is needed to identify
and confirm the importance of predictors of caregiver
preparedness, to establish their generalizability, and to
determine their implications for advanced practice nurses.

Implications for Advanced Practice Nurses

Implications for advanced practice nurses (APN) in
primary care can be derived from the findings in this study.
There are a number of strategies the APN can utilize in the
clinical practice setting. Implementing these strategies
requires the APN to draw upon his/her unique role
characteristics. Implications for the roles of assessor,
planner, clinician, educator, advocate, leader, and
researcher will be discussed.

Stroke is a leading cause of disability in the United
States. Its incidence increases steadily with age and tends
to affect men more frequently than women. With the aging
American population it can be expected that more people will
be at higher risk for developing stroke. Health care
services previously provided within the acute care setting
are increasingly being shifted to home and family care.
Societal expectations demand that families provide the
majority of care to its disabled members. Individuals who
assume the role of primary caregiver may find themselves ill

prepared and uninformed about what to do in their new role.

56

The potential for caregivers to become overwhelmed and
develop stress-induced illnesses could result in detrimental
effects for both caregiver and care-receiver.

Family caregivers of stroke survivors tend to be
elderly female spouses. Many of these women may be facing
health problems of their own. As an assessor, the APN is
responsible for performing a comprehensive assessment by
identification of data, subjective and objective, that may
influence a caregivers health status. In collecting data the
APN needs to assess a caregiver’s knowledge, expectations,
and perceived needs on issues related to stroke, home care
and social factors. Specific questions may focus on: to whom
and for how long has this individual been providing care;
what is the quality of relationship with care receiver; how
does she perceive the situation and its effects on her
health; how much and what type of care is required; does she
receive assistance from family or friends; what has she done
to prepare for the role; how has she handled crises in the
past. Objectively, the APN needs to assess for possible
physical and/or psychological effects of caregiving which
may include hypertension, fatigue, depression, anxiety, or
back strain.

Appraisal of the caregiving situation needs to be
ongoing. Periodic health screening appraisals will allow the
APN to detect changes in the physical and/or mental health

status of either caregiver or care receiver. An appraisal

57

may include such issues as: patients’ cognitive/social
behaviors, quality of patient-caregiver relationship,
ability of caregiver to find time for rest and relaxation.
Early interventions may require suggestion or acquisition of
specific services as the need arises, as well as offering
anticipatory guidance and teaching coping strategies.
Catching problems before they become full blown health
concerns can save the family unnecessary grief and
suffering. An assessment of the caregivers social support is
also essential at this stage.

Caregiver planning is critical to all forms of
caregiving. Once a thorough assessment has been made, the
APN can develop a goal directed plan of care to support
caregivers in their roles. The APN must develop
individualized interventions that are planned with the
family caregiver. The outcome of this should be maintenance
of the caregiver role, promotion of optimal health status of
the caregiver, and to decrease the potential for crisis
situations to arise that would negatively impact caregiver
and care receiver. The individualized plan needs to take
into consideration the caregivers economic resources, social
support systems, education level, employment status,
competing roles, and patients functional disabilities.

The APN as a planner of care may independently develop
or offer consultation on programs that support caregivers in

their role. Given that family caregivers spend time

58

assessing and evaluating a care-receivers symptoms, as well
as functioning as the primary home care problem solver,
programs that help caregivers develop, refine, and expand
problem-solving skills would be beneficial. This is an ideal
way to provide anticipatory guidance to caregivers and when
done within a small group setting can draw upon the
experiences of other caregivers. Planning and implementation
of a stroke support group would be another way to assist
caregivers in their roles.

The APN as planner and coordinator of care must be
familiar with community resources. Because of the high
dependency needs seen in the patients in this study, there
may come a time when the caregiver would require additional
assistance. Caregivers who have little family support may
benefit from such programs as meals on wheels, chore
services, respite care, and transportation assistance. Many
of these services are free or charge only minimal fees which
can be beneficial if financial resources are a concern for
caregivers. Arranging referrals when appropriate and
acceptable to the caregiver can relieve some of the stress
associated with caregiving. As a clinician, the APN can use
alternative interventions such as relaxation techniques,
diary/journal writings, humor therapy, or music therapy
within the office setting to aid the caregiver in their

ability to cope with a stressful situation.

59

The role of advocate for the caregiver and the
implementation of advocacy as an intervention are integral
to the practice of an APN in primary care. Developing a
sustained partnership with caregivers can assist the APN to
facilitate the clients ability to identify their rights and
abilities as a caregiver. Resources can than be identified
that can assist the family caregiver in his/her role. These
resources may include community support groups, local or
national associations for caregivers, and respite programs.

The educator role is one of the most commonly utilized
components of the APN role. Through the role of educator the
APN is in a pivotal position to influence client, family,
and health care team member behaviors. As an educator the
APN can assist family caregivers of stroke patients in
learning new skills that may be required for caregiving as
well as educating in regards to available resources. The
specific skills required by caregivers were not addressed in
this study, however, the dependencies in ADL's and IADL’s
among care-recipients indicate that caregivers may be
required to perform tasks that are usually performed by
health care professionals. The variety and complexity of
these tasks may influence the caregivers perceived
preparedness due to a lack of knowledge or familiarity
regarding necessary skills or resources available to assist
them in their role. Counseling the caregiver in such stress

management strategies as pacing obligations, learning to ask

6O

for help, and obtaining resources may prevent unnecessary
stress.

The APN, by assessing the care-recipients unique
physical condition, emotional state, or other particular
need is able to develop and individualize the content of
educational programs that address specific tasks of
caregiving. Content of these programs could range from
techniques for lifting, transferring, bathing and dressing,
to teaching caregivers how to manage time, balance a check
book, pay bills, or do minor home repairs. Programs such as
these could be conducted at local stroke support group
meetings, in rehabilitation centers, or local hospitals
prior to patient discharge. The caregivers need anticipatory
guidance regarding the changes that caregiving will bring
into their lives, as well as how to manage the patients'
physical and emotional needs. It would make sense that
education and preparedness are linked in that exposure to an
unfamiliar task would increase that caregivers subjective
feeling of being prepared to deal with it again in the
future. Further research that examines the effect of
educational programs on preparedness need to be conducted to
substantiate this assumption.

In addition to caregiver education, the APN can
participate in the education of professional colleagues,
primary and acute care providers, and policy makers.

Increasing awareness of the issues impacting caregivers can

61

lead to community and legislative agendas that support
quality care in the home care setting. Support services
(support groups, respite care, and home care services) are
essential to helping caregivers carry out their role and to
maintain care-recipients in the home setting. Community
leaders 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 payer. Acute
care providers can be made aware of the importance of
education for caregivers prior to hospital discharge and how
this impacts preparedness and the care that care-recipients
receive.

There are several implications for the APN as
researcher. The APN, whether novice or experienced
clinician, should be a consumer of research that focuses on
family caregivers. Remaining current on caregiver literature
will allow the APN to evaluate what interventions are
effective in assisting caregivers in their role. As the APN
becomes more of an expert clinician, he/she may become more
involved as initiator or collaborator of research in order
to advance a scientific basis for nursing knowledge and
practice in order to improve quality care. Specifically,
future research by the APN may focus on development of a
knowledge or skill scale and measurement of objective

patient outcomes to assess caregiver preparedness.

62

Summary

This study focused on caregivers of stroke survivors in
an attempt to identify factors that may influence caregiver
preparedness. Although most predictor variables had no
effect on perceived preparedness, two variables that proved
to be significant were unpleasant patient behavior and
relationship status. Caregivers reported high levels of
preparedness in caring for stroke survivors who experienced
high dependencies in ADL’S and IADL'S. A unique feature of
this study was that caregivers were dealing with a new
caregiving situation, in essence they were novice
caregivers. The preparedness scale utilized in this study
lacked validity for assessing relevant preparedness
dimensions. Further research is needed that uses more than
one measure to capture the multidimensionality of
preparedness. Advanced practice nurses and other health care
professionals must assume a lead role in continued efforts

to address issues of caregiver preparedness.

63

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66

Tyman, R. V. (1994). The stress experienced by
caregivers of stroke survivors: Is it all in the mind, or is
it also in the body? Clinical Rehabilitation, 8, 341-345.

U. S. Department of Health and Human Services. (1995).
Post-stroke rehabilitation: Clinicalgpractice guidelines
(AHCPR Publication No. 95-0662). Rockville, MD: Author.

Vanetzian, E. & Corrigan, B. A. (1995). A comparison of
the educational wants of family caregivers of patients with
stroke. Rehabilitation Nursing, 20 (3), 149-154.

Weeks, S. K. (1995). What are the educational needs of
perspective family caregivers of newly disabled adults?
Rehabilitation Nursing, 20 (5), 256-260.

Williams, A. (1994). What bothers caregivers of stroke
victims? Journal of Neuroscience Nursing, 26 (3), 155-161.

Wright, L. K., Clipp, E. C., & George, L. K. (1993).

Health consequences of caregiver stress. Medicare, Exercise,
Nutrition, and Health, 2, 181-195.

67

APPENDIX A

ID

CARD Q 1 2

The following questions ask you to consider how well prepared you feel for a
number of caregiving activities for your relative/friend. For each item
please indicate the following:

Overall, how well prepared do you feel you are to.....
Would you say: (CIRCLE ONE RESPONSE)

 

 

 

l - Not At All Prepared
2 - Not Too Well Prepared
3 - Pretty Well Prepared
4 - Very Well Prepared
How well prepared do you feel you are to .... (CIRCLE ONE RESPONSE)
5. To care for (____;g) physical needs 1 2 3 4 __
(e.g. Dressing, Toileting, Bathing, etc.)? 25
6. To take care of ( '3) emotional needs? 1 2 3 4 __
26
7. To find out about and set up formal services 1 2 3 4 __
for (___;5) care? 27
8. To care for ( 's) medical/nursing treatments 1 2 3 4 __
(e.g. giving medicines, changing dressing, 28
skin care, exercises, etc)?
9. To manage finances, bills, and insurance forms 1 2 3 4 __
related to ( '5) care needs? 29
10. To plan for activities such as rest, meals, 1 2 3 4 __
recreation, or things for ( ) to do 30
11. To manage ( '5) behavior problems, such as l 2 3 4 ‘__
moodiness, irritability and confusion? 31
12. To manage equipment and techniques necessary 1 2 3 4 __
to care for ( )? 32
13. Overall, how well prepared do you think you 1 2 3 4 __
are for the role of caregiving? 33

68

APPENDIX B

Regular Telephone
Patient Cognitive/Social Behaviors
Page 1

PATIENT COGNITIVE/SOCIAL BEHAVIORS

In the following questions. we would like to know how frequently (

displays the following behaviors.
SOMETIMES. MOST OF THE TIME. and ALWAYS.

How often does your friend/relative ...

have probless expressing thoughts?

9!! the present sixad up with the
Past?

forget where halsha is?

see or hear things that are not
there?

forget iaportant or recent events?
forget your nose?

have difficulty recognizing
familiar people?

sees confused?
forget what day it is?

repeat hisself/harself or ask sass
question over and over?

Sly sentences which sake no sense?

6!?

The answers
(CHECK ONE FOR EACH)

)
you say choose from are: NOT AT ALL.

HOT MOST OF
AT ALL SOMETIMES THE TIN! ALWAYS

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

2.

Regular Telephone
Patient Cognitive/Social Behaviors
Page 2

Nowadays. how often does it strike you that ( 's) behavior is characterized by
any of the following ... (CHECK ONE FOR EACH; Again. your choices are: NOT AT ALL.
SOHETIHES. MOST OF THE TIME. or ALHAYS.

NOT MOST OF
How often is 's behavior ... AT ALL SOMETIMES THE TINE ALHAYS

 

a. unpleasant and uncooperative?

 

b. depressed and/or tearful?

 

c. withdrawn or lethargic?

 

d. fearful. anxious. or extrenely
tense?

 

a. full of unrealistic physical
couplaints?

 

f. suspicious (wore than reasonable)?

 

g. bizarre or inappropriate in thought
or action?

 

h. excessively talkative or overly
cheerful or elated?

 

 

 

 

 

 

[J'
10/4/89
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71)

 

 

ACTIVITIES OF HEALTH CARE

 

The next eat of questions includes health care activities or treatments that ( ) may or may not require. First, I will
ask if ( ) requires this kind of help, and than 1 will have additional questions about how you and others help.

INTERVIEHER: The following questions have four sections: A.B. C. L 0.

Ask section A -— each item for all caregivers.

If answer in section A is NO —— go to next item.

If answer in section A is YES -- go to section B.

If answer in section B is NEVER or O —- go to section D.

If answer in section B is l. 2. 3. or 4 -- go to section C then section D.

If answer in section D is l. 2. 3. or 4 - go to section E

 

 

 

 

(MARK THE APPROPRIATE ANSWERS FOR EACH)

 

 

 

 

 

A. Does your YES N0 8. If VES. how frequently C. If answer l—d to D. If YES-to A. E. If others help. are
relative have or (CIRCLE do you help your relative part B, haw competent how frequently do they family or friends
require help with... ONE) with ? do you feel in helping OTHERS help your or health professionals
your relative/friend friend/ relative or both. CHECK ALL
0 = NEVER with 7 with 7 THAT APPLY
l x ONCE A WEEK OR LESS
2 = SEVERAL TIMES A WEEK 3 = EXTREMELY COMPETENT O = NEVER
(2-6) 2 = SOMEWHAT COMPETENT l = ONCE A WEEK
3 = ONCE A DAV l = NOT VERY COMPETENT OR LESS
4 = SEVERAL TIMES A DAY 0 = NOT AT ALL 2 = SEVERAL TIMES
(CIRCLE ONE) COMPETENT A WEEK (2-6)
(CIRCLE ONE) 3 = ONCE A mv
4 = SEVERAL TIMES
A DAV
Family Health
1 2 l 2 3 4 3 2 i O O l 2 3 4 0! Prof.
Go to Friends
Sec. 0 Go to Sec. C 60 to Section D
:3. Urinary l 2 0 l 2 3 a 3 2 l o o I 2 3 4 __
catheter/
catheter care.
14. Oxygen l 2 O l 2 3 4 3 2 1 O O l 2 3 4 _____
administration. &
‘i
l5. xv. Hickman or 1 2 0 1 2 3 a 3 2 1 o 0 l 2 3 a ______
Broviac.
catheter
care/dressing.
l6. IV medications/ l 2 O l 2 3 A 3 2 l O 0 l 2 3 4 _____
fluids/feedings
l7. Tube feedings l 2 0 l 2 3 4 3 2 l 0 U l 2 3 4
or IV feedings.

 

 

 

71

 

 

 

 

 

A. Does yOur YES N0 8. If YES. hOw frequently C. If answer l-4 to D. If YES to A. E. If others help. are
relative have or (CIRCLE do you help your relative part 8. how competent how frequently do they family or friends
require help with... ONE) with do you feel in helping OTHERS help your or health professionals
your relative/friend friend/ relative or both. CHECK ALL
0 = NEVER with with 7 THAT APPLY
l = ONCE A WEEK OR LESS
2 = SEVERAL TIMES A WEEK 3 x EXTREMELY COMPETENT 0 = NEVER
(2-6) 2 1 SOMEWHAT COMPETENT l = ONCE A WEEK
3 = ONCE A DAY 1 = NOT VERY COMPETENI OR LESS
4 = SEVERAL TIMES A DAY 0 3 NOT AT ALL 2 = SEVERAL TIMES
(CIRCLE ONE) COMPETENT A WEEK (2-6)
(CIRCLE ONE) 3 = ONCE A DAY
4 = SEVERAL TIMES
A DAY
Family Health
I 2 O l 2 3 4 3 2 l 0 O l 2 3 4 or Prof.
Go to Friends
Sec. 0 Go to Sec C Go to Section D
l8. Injections l 2 0 l 2 3 A 3 2 l O 0 l 2 3 4
(0].. pain —_—-
meds/insulln).
l9. Special l 2 0 l 2 3 4 3 2 l O O l 2 3 4
enercises/phys.
therapy.
20. Care of ulcers/ l 2 0 l 2 3 4 3 2 l O 0 l 2 3 A
bedsores.
2i Skin care l 2 0 l 2 3 4 3 2 l 0 U l 2 3 4
(special —————
cleansing/
lotions).
22 Colostomy/ l 2 O l 2 3 a 3 2 I 0 0 l 2 3 A
colostomy care.
23. Care of Post 1 2 0 l 2 3 a 3 2 I 0 0 l 2 3 4 __
09.1ncision/
wound
24. Oral l 2 O l 2 3 4 3 2 l 0 O l 2 3 4
medications.
25. Nasograstric l 2 O l 2 3 A 3 2 l O O l 2 3 4 _____
tube and care.
26. Incontinence of l 2 0 l 2 3 4 3 2 l 0 0 l 2 3 4
urine.
27. Incontinence of l 2 O l 2 3 4 3 2 l O 0 l 2 3 4
stool.
28. Tracheostomy/ l 2 0 l 2 3 4 3 2 l 0 O l 2 3 4
trachaostomy
care.
29. Respirator/care l 2 0 l 2 3 A 3 2 l O 0 l 2 3 4
of respirator.
30. Suctioning. l 2 0 l 2 3 4 3 2 l O O l 2 3 4

72

 

 

 

 

 

 

 

 

1.

Involvement Instrument
CB II. Have I
Regular Telephone
Involveunt
Page I

INVOLVEIEHT

The next set of questions addresses the PRESENT level of per-forIance for the person you
care for on a m-oar of activities and the way mu AND OTHER PEOPLE help hie/her. For
each itea. please choose the response that mst closely describes the patient' s PRESENT
condition and how you assist hia or her.

 

INTERVIEIER: OTHER PEOPLE category aay include assistama fr. agencies.
paid helpers. and f-ily and friends. The purpose of these
Questions is to assess LA involv-ant. CLARIFICATIDN—

'Oenarally speaking overthe past aonth ...'

 

 

 

DRESSING
IIHTERVIEHER: CATEGORY DEFINITIDHS ARE HEART roe MPDSES U CLARIFICATIGII

This category includes the entire process of dressing or being clothed. including
change Pm bad clothing into the set of clothing worn during the day. and change to
bed clothing at night. This category DOES NOT include aanageunt of clothing during
toileting. f relative lwa wears bed clothi durino the da answer 'NEVER
DRESSED." Se act the category that best describes your re ativa' unct oning
Winnie.

Ia. Hith regard to dressing. would you say ( ) ... (CHECK (HIE)

  

IS INDEPENDENT — (does not need help of another person in any part of this-
activity) (GO TO ITEH '2). (I)

NEEDS SUPERVISION ONLY - (remires another person present during the
activity to instruct or watch for probleas. but does not need the physical

help of another person.) (2) (Go to Ib)

NEEDS SOME PHYSICAL HELP -— (reouires physical help and the presence of
another during all or part of this activity.) CARE RECIPIENT PARTICIPATES.

(3)

NEEDS TOTAL PHYSICAL HELP -_- (needs another person to carry out this
activity.) CARE RECIPIENT DOES NOT PARTICIPATE. (4)

IS NEVER DRESSED (5)

73

CS II. Have I

Regular Telephone
lnvolveoent
Page 2

(The next set of questions is about how frequently you and other people help your
relative/friend with dressing.)
Ib. Now frequently do YOU help the patient with dressing? (CIRCLE ONE)

NEVER ONCE A NEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAY A DAY

 

INTERVIEHER: I'Nelp" includes any coopination of supervision. soee physical
help. ano total physical help.

 

 

INTERVIEHER: Even if caregiver 'never helps'. 60 TO PART C. DE MSTION
(others help).

 

 

It. How often do OTNER PEOPLE help the patient with dressing? (CIRCLE ONE)

NEVER ONCE A.HEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAY A DAY

7ND

CG II. Have I
Regular Telephone
Involvement

Page 3

EATING

This category includes all types of food and liquid taken by mouth.

 

INTERVIEHER: Includes all types of presentation used -- tray, finger foods.

etc.; client does not need to use utensils.) Does not include
selection or preparation of food.

 

2a. Hith regard to eating. would you say (____________) .... (CHECK ONE)

IS INDEPENDENT -- (does not need help of another person in any part of
this activity) (60 TO ITEM 03). (I)

NEEDS SUPERVISION ONLY -- (requires another person present during the
activity to instruct or watch for problees. but does not need the physical
help of another person.) (2)

NEEDS SONE PHYSICAL HELP -- (requires physical help and the presence of
another during all or part of this activity.) CARE RECIPIENT PARTICIPATES.

(3)

NEEDS TOTAL PHYSICAL HELP -- (needs another person to carry out this
activity.) CARE RECIPIENT DOES NOT PARTICIPATE. (4)

NOT APPLICABLE (needs tube feedings. IV'S ONLY - Go to itee 03)

(The next set of questions is about how frequently you and other people help your
relative with eating.)

2b. How frequently do YOU help the patient with eating? (CIRCLE ONE)

NEVER ONCE A NEE! SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAY A DAY

 

help. and total physical help.

I INTERVIEHER: 'Help includes any combination of supervision. sooe physical

 

 

 

INTERVIEHER: Even if caregiver 'never helps'. 5Q_IQ_£A£I_§‘_QE_QQESIIQN

(others help).

 

2c. How often do OTHER PEOPLE help the patient with eating? (CIRCLE ONE)

NEVER ONCE A HEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAY A DAY

755

 

CO II. Have I
Regular Telephone
Involveoent

Page 4

DATMING

This category includes all activities of bathing, whether tub or shower or bed bath:
entry into tub or shower. wetting. soaping. rinsing. exit. drying body. Does not
include washing of head or drying hair. Does not include dressing or undressing.
Select the response that best describes your relative's level of functioning for
bathing.

3a.

Hith regard to bathing. would you say ( ) ... (CHECK ONE)

IS INDEPENDENT -- (does not need help of another person in any part of this
activity.) (60 TO ITEM ll).

NEEDS SUPERVISION ONLY -- (requires another person present during the
activity to instruct or watch for problees. but does not need the physical
help of another person.)

NEEDS SONE PHYSICAL HELP -— (rebuires physical help and the presence of
another during all or part of this attivity.) CARE RECIPIENT PARTICIPATES.

NEEDS TOTAL PHYSICAL HELP -- (needs another person to carry out this
activity.) CARE RECIPIENT DOES NOT PARTlClPATE.

(The next set of ouestions is about how frequently you and other people help your
relative with bathing.)

 

 

 

 

3b. How frequently do YOU help the patient with bathing? (CIRCLE ONE)
NEVER ONCE A HEEK SEVERAL TIMES ONCE A SEVERAL TINES
OR LESS A HEEK (2—6) DAY A DAY
INTERVIEHER: Even if caregiver 'never helps'. 60 TO PART C, OP QUESTION
(others help).
3c. How often do OTHER PEOPLE help the patient with bathing? (CIRCLE ONE)

NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAY A DAY

'76

 

CG II. Have I
Regular Telephone
lnvolveeent

Page 5

HALRINO iNSlOE THE HOUSE

This category includes all upright eoveeent on foot over the floor inside the house.
MUST MOVE AT LEAST FIVE FEET. May use cane. walker. crutches. or handrail, SeleCI the
response that best describes your reiative's level of functioning for waiting.

4a. Hith regard to waiting inside the house. would you say (_________) ... (cuacx one)

IS INDEPENDENT - (does not need help of another person in any part of this
activity.) (60 TO ITEM IS).

NEEDS SUPERVISION ONLY - (requires another person present during the
activity to instruct or watch for proble-s. but does not need the physical
help of another person.)

NEEDS SOME PHYSICAL HELP - (requires physical help and the presence of
another during all or part of this activity.) CARE RECIPIENT PARTICIPATES.

NEEDS TOTAL PHYSICAL HELP -- (needs another person to carry out this
activity.) CARE RECIPIENT DOES NOT PARTICIPATE.

UNABLE TO HALR - (will not bear weight.)

 

INTERVIEHER: If relative is UNAOLE TO HALK. go to itee IS.

 

(The next set of questions is about how frequently you and other people help your
relative with walking.)

4b. How frequently do YOU help the patient with walking? (CIRCLE ONE)

NEVER ONCE A NEE! SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAV A DAT

 

INTERVIEHER: Even If caregiver 'never helps'. 60 TO PART C. or OUESTION
(others help).

 

 

4c. How often do OTHER PEOPLE help the patient with walking? (CIRCLE ONE)

NEVER ONCE A HEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAV A DAY

77

CC II. Have 1
Regular Telephone
Involvement

Page 6

TOILETING

This category includes all those behaviors associated with bowel/bladder emptying:
getting to and from toilet (or use of toileting equipment such as bedpan).
removal/adjustment of clothing, positioning on toilet. cleaning of body parts.
replacement of clothing. Select the response that best describes your relative’s level
of functioning for toi eting.

5a. Vith regard to toileting, would you say (________) ... (CHECK ONE)

IS INDEPENDENT -- (does not need help of another person in any part of this
activity.) (60 TO ITEM IS).

NEEDS SUPERVISION ONLY -- (requires another person present during the
activity to instruct or watch for problems. but does not need the physical
help of another person.)

NEEDS SOME PHYSICAL HELP.-- (requires physical help and the presence of
another during all or part of this activity.) CARE RECIPIENT PARTICIPATES.

NEEDS TOTAL PHYSICAL HELP -- (needs another person to carry out this
activity.) CARE RECIPIENT DOES NOT PARTICIPATE.

NOT APPLICABLE (has catheter. colostoey - So to itee :6)

(The next set of questions is about how frequently you and other people help your
relative with toileting.)

Sb. How frequently do YOU help the patient with toileting? (CIRCLE ONE)

NEVER ONCE A NEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY

 

INTERVIENER: Even if caregiver 'never helps', 59 T9 EABI ;, QF QUESIIQH
(others help).

 

 

Sc. How often do OTHER PEOPLE help the patient with toileting? (CIRCLE ONE)

NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A NEEK (2-6) DAY A DAY

'78

CS II. Have I
Regular Telephone
Involveeent

Page 7

TRANSFERRING - [NIGHT OF BED
This category includes eoveeent to and free bed. to chair or wheelchair. or set on
toilet or coo-ode. Devices. bars. and other eechanical aids eay be used. Select the

response that best describes the relative's level of independence.

6a. Hith regard to transferring. in/out of bed. would you say (
ONE)

.. . (CHECK

_.__)

IS INDEPENDENT - (does not need help of another person in any D.,: of this
activity.) (60 TO ITEM '7).

NEEDS SUPERVISION ONLY - (requires another person present during the
activity to instruct or watch for problees. but does not need the physical
help of another person.)

NEEDS SOME PHYSICAL HELP - (requires physical help and the presence of
another during all or part of this activity.) CARE RECIPIENT PARTICIPATES.

NEEDS TOTAL PHYSICAL HELP -- (needs another person to carry out this
activity.) CARE RECIPIENT DOES NOT PARTICIPATE.

REMAINS DEDFAST

 

INTERVIEHER: If relative REMAINS OEOFAST. go to itee '7.

 

 

 

(The next set of questions is about how frequently you and other people help your
relative with transferring.)

6b. How frequently do YOU help the patient with transferring? (CIRCLE ONE)

NEVER out: A vast SEVERAL mes once A SEVERAL TIMES
on us: A HEEK (2-5) DAY A DAY

 

INTERVIEHER: Even if caregiver 'never helps'. 60 TO PART C. DE OUESTION
(others help).

 

 

6c. How often do OTHER PEOPLE help the patient with transferring? (CIRCLE ONE)

NEVER ONCE A NEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAY A DAY

79

 

CC II. Have I
Regular Telephone
Involve-ant

Page I

The next list includes additional activities with which your relative nay require
assistance. For each activity. please tell no how such help your relative needs and
how frequently you and other help with this activity.

COOKING/PREPARING MEALS

7a.

7b.

How ouch help does ( ) presently need with cooking? Does he/she need:
(CHECK ONE)

iNl HELP? (Patient is independent.) (Do to its. 08)

SOME HELP? (Patient requires sane assistance: relative participates in this
activity.)

TOTAL HELP? (Patient does not participate in this activity but has done in the
past.)

TOTAL HELP? (Patient does not participate in this activity and never has. Not
faeily role.)

NOT APPLICABLE (patient has tube feedings. IV's ONLY - Go to itee f8)
How frequently do YOU help the patient with cooking or cook for then? (CIRCLE ONE)

NEVER ONCE A VEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A REEK (2-6) DAY A DAY

 

7c.

INTERVIENER; Even if caregiver 'never helps‘. PA T F ‘
(others help).

How frequently do OTHERS help the patient with cooking or cook for thee? (CIRCLE
ONE)

NEVER ONCE A NEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A NEEK (2-6) DAY A DAY

80

CG II. Have I
Regular Telephone
Invol veunt

Page 9

MOUSEWRK -- (PICKING UP. DUSTING. LIGHT CLEANING. VACUINIING. DOUG DISHES)

Re. How much neip does ( ) presently need with housework? Does he/she need:
(CHECK ONE)

NO HELP? (Patient is independent.) (Go to itee '9)

SOME HELP? (Patient requires soee assistance: relative participates in this
activity.)

TOTAL HELP? (Patient does not participate in this activity but has done in past.)

TOTAL HELP? (Patient does not participate in this activity and never has done.
Not feldly role.)

Rb. How frequently do YOU help the patient with housework or do housework for
thee? (CIRCLE ONE)

NEVER ONCE A HEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A NEEK (2-6) DAY A DAY

 

INTERVIEHER: Even if caregiver ‘never helps'. GO TO PART C. DE QUESTION
(others help).

 

 

Dc. How frequently do OTHERS help the patient with housework or do housework for
thee? (CIRCLE ONE)

NEVER ONCE A NEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAY A DAY

81

CO II. Have I
Regular Telephone
Involve-ent

Page IO

SHOPPING (Includes all types of purchases.)

How euch help does ( ) presently need with shopping? Does he/she neee:

(CHECK ONE)
NO HELP? (Patient is independent.) (Go to ite- flO)

 

SOME HELP? (Patient requires sole assistance: relative participates in this
activity.) '

TOTAL HELP? (Patient does not participate in this activity but has in the past.)

TOTAL HELP? (Patient does not participate in this activity and never has. Not
falily role.)

How frequently do YOU help the patient with shopping or shop for thee? (CIRCLE
ONE)

H ER ONCE A NEEK SEVERAL TIMES ONCE A SEVERAL TIMES
EV OR LESS A HEEK (2-6) DAY A DAY

 

 

INTERVIEHER: Even if caregiver 'never helps'. GO TO PART 5. OF OUESTION
(others help).

 

9c.

How frequently do OTHERS help the patient with shopping or shop for thee? (CIRCLE
ONE)

NCE A NEEK SEVERAL TIMES ONCE A SEVERAL TIMES
"EVER 0 OR LESS A HEEK (Z-O) DAY A DAY

ENZ

10.

CE II. Have 1
Regular Telephone
Involvement

Page II

LAUNDRY

IOa.

How ouch help does ( ) presently "886 “It" laundry? DOES he/she need:
(CHECK ONE)

NO HELP? (Patient is independent.) (Go to itee III)

SOME HELP? (Patient requires sou assistance: relative participates in this
activity.)

TOTAL HELP? (Patient does not participate in this activity but has done in the
past.)

TOTAL HELP? (Patient does not participate in this activity and has never done.
Nat fali ly role.)

 

 

 

 

IOb. How frequently do YOU help the patient with laundry or do laundry for thee?
(CIRCLE ONE)
NEVER ONCE A NEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAY A DAY
INTERVIENER: Even if caregiver 'never helps'. GO TO PART C. DE OOESTION
(others help).
IOc. How frequently do OTHERS help the patient with laundry or do laundry for

then? (CIRCLE ONE)

NEVER ONCE A NEE! SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A NEEK (2-6) DAY A DAY

83

 

11.

CG II. Have I
Regular Telephone
Involvelent

Page 12

TRANSPORTATION

IIa.

How nuch help does ( ) presently neeo with transportation? Does he/she
need: (CHECK ONE)

NO HELP? (Patient is independent.) (Go to iten '12)

SOHE HELP? (Patient requires some assistance; relative participates in this
activity.)

TOTAL HELP? (Patient does not participate in this activity but has done in the
past.)

TOTAL HELP? (Patient does not participate in this activity and_has never done.)

 

 

 

 

IIb. How frequently do YOU help the patient with transportation? (CIRCLE ONE)
NEVER ONCE A HEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAY A DAY
INTERVIEHER: Even if caregiver ‘never helps‘. GO TO PART C. DE OUESTION
(others help).
IIc. How frequently do OTHERS help the patient with transportation? (CIRCLE ONE)

NEVER ONCE A HEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAY A DAY

84

 

12.

CG II. Have 1
Regular Telephone
Involvement

Page 13

MONEY MANAGEMENT - (PAYING BILLS. MAINTAINING ACCOUNTS)

12a. How luch help does ( ) presently need with money nanageeent? Does he/she
need: (CHECK ONE)

NO HELP? (Patient is independent.) (Go to itel '13)

SOME HELP? (Patient requires soae assistance; relative participates in this
activity.)

TOTAL HELP? (Patient does not participate in this activity but has in the past.)

TOTAL HELP? (Patient does not participate in this activity and never has.)

12p. How frequently do YOU help the patient with aoney eanageeent or do Ioney
Ianagelent for then? (CIRCLE ONE)

NEVER ONCE A HEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAY A DAY

 

INTERVIEHER: Even if caregiver 'never helps‘. GO TO PART C. OF QUESTION
(others help).

 

 

12c. How frequently do OTHERS help the patient with money eanagenent or do honey
Ianagelent for thee? (CIRCLE ONE)

NEVER ONCE A HEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A HEEK (2-6) DAY A DAY

[1'
10/11/89
3/6

855

APPENDIX C

(caregiver) NSU fANILY CARE STUDY
CONSENT FORM

The study in which we are asking you to participate is designed to learn were about m.
ways in which caring for an elderly faeily eenber affects the person providing the care.

Over the next IO eonths. 650 caregivers will be interviewed five (5) tiles over the
telephone by a newer of the MSU Faoily Caregiver Study research staff. Each teTephone
interview will take approxieately 20.40 eimtes to cooplete. In addition. you eay be
asked to cowlete nailed questionnaires. which should also take about 20-30 einutes. and
return then in the self-addressed stuped envelope. The telephone interviews and nailed
questionnaires will be coqleted at your convenience.

If you are willing to participate in this study please read and sign the following
stateeent.

I. I have freely consented to take part in a study of faeily caregivers conducted by
the College of Nursing and the Oeparteent of Fanily Practice. College of Nuean
Nedicine. at Michigan State University.

2. The study has been described and explained to pa and I understand what ey
participation will involve. and to reoain in the study I mst contime to loot the
criteria for entry.

3. I understand oy participation in this study is voluntary. will involve no cost to
De. and that ny decision will in no way affect oy current or future health care.

4. I understand that I lay withdraw froe participation at any tine without penalty to
Ie by calling 1400-5544219.

5. I understand that the results of this study will be treated in strict confidence and.
should they be published. oy naee will reeain anony-ous. I understand that within
these restrictions. results can. upon request. be eade available. to ee.

6. I understand that I will not be placed at any increased risi: by participating in this
study. Participation does not involve any physical activity. Interviews will be
sainistered by thoroughly trained and closely eonitored graduate students in a
private and confidential eanner.

7. I understand that no inediate benefits will result froe oy taking part in this
study. but an aware that oy responses lay add to the understanding of health care
professionals and ey influence future faoily care.

8. I understand that I have the right to seek further infomatipn about this study. and
ey right relating to it. by calling the research office (517) 355-1851 or toll free.
1400-6544219.

 

 

 

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

Signed Date

WIS/89

100:3

86

(patient) MSU FAMILY CARE STUDY
CONSENT EORM

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

Over the next IO months. 650 caregivers will be interviewed five (5) tines over the
telephone by a ember of the $0 Tanily Caregiver Study research staff. They will be
asked questions regarding changes in your health and issues related to caregiving. Your
participation will involve providing infatuation on your insurance coverage and your

health status. If you are willing to participate in this study please read and sign the
following statenent.

I. I have freely consented to take part in a study of fully caregivers conducted by
the College of Nursing and the Oepartalent of fully Practice. College of Nunan
Nedicine. at Michigan State University.

2. The study has been described and explained to ne and I understand what ny
participation will involve.

3. I understand my participation in this study is voluntary. will involve no cost ‘to
ne. and that an decision will in no way affect any current or future health care.

a. I understand that l nay withdraw froe participation at any tine without penalty to
De by calling 1400-69-82“.

5. I understand that the results of this study will be treated in strict confidence and.
should they be published. any nane will reoain anonyalous. I understand that within
these restrictions. results can. upon request. be eade available to ale.

6. I understand that no inediate benefits will result froo oy taking part in this
study. but an aware that ey responses oay add to the understanding of health care
professionals and pay influence future faeily care.

7. I understand that I have the right to seei: further infornation about this study. and
Iy rights relating to it. by calling the research office: (517) 355-1051 or toll
free. 14004544219.

8. I understand that a neaber of the research staff nay need to review part of any
current eedical record to obtain a list of any current oedical diagnoses/problem.
l consent to allow access to the hospital discharge plaming docueents for
infomtion about aly hone care needs and services. and understand that this
infornation will renain strictly confidential.

9. I understand that a ate-oer of the research staff nay wish to inquire about any group
health insurance policy benefits to understand what benefits are available to ac and
col-pare these to what i an presently using. I give any consent for the hospital
discharge coordinator to provide any group insurance(s) policy snipers so the research
staff nay identify what insurance benefits I have. with the understanding that they
will renain strictly confidential

l. . state that I understand what is required of ne as a
pertiflpant afi agree to take part in this study.

 

Patient Signature Date
ON
Guardian/fanny Henber liltness

WIS/89
“1):?

87

 

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MICHIGAN STATE
u N l v E n s I T v

June 22.

TO:

19’.

Manfred Sta-nel
A-lOJ Lite Sciencea Building

IRBI:

’O-JIS

TITLE: PREDICTORS OF PERCEIVED LEVILS OP

AMONG CARBOIVBRS OP STROKI ounvxvogg'PAn 388

REVISION REQUESTED: N/A
CATEGORY: I-B
APPROVAL DATE: OG/ISIQI

The Univeroit Committee on Neaearch lnvolvin Nunan sub t I
review of thi: project ie complete. I an plegaed to adv ec . iUCRINS)

ae that the

righta and weltare ot the hueun aubjecte appear to be adequatel

rotected and nethoda to obtain inforned coneent are a

 

ropriat

gggretore. the UCRTNS approved thia project and any rev eiona lTated
a we.

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raoatewa/
onshore.

l! we
at (51

  
  

vi
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as Chair

can
7’35

”CRIN! a roval ia valid (or one calen ar ear beg
the apprgeal date ehown above. lnveatfgatgra planning

continue a project beyond one year euat uae the green renewal
fore iencloaed with t a original approval letter or when a

pro act ie renewed) to aeek u ate certification. There to a
eax one 0 our auch expedite renewala poeeible. lnveatigato a
wiahing to continue a roject beyond the tine need to ooh-it It
again or coeplete rev aw.

nning with
to

uterus euat review an cha ea in rocedurea involvi hone
aubjecte. rice to inxtiatggn of tfie change. It thi2’ia dose at
the tine o renewal. pleaae uae the freen renewal torn. To
raviaa an a roved protocol at an o:her time during the year
aend your wr tten requeat to the IN! chair. requeating reviaed
approval and raferenci the project"a III I and title. Include
in our requeat a deacr ption o! the change and any revieed

ina runenta. conaent for-a or advertiaaaente that are applicable.

 

Should either of the followi ariae duri the can

work. inveeti atora Iuet not??y ”CRIN! rggptly: (IT. :ng=:e
n xpacted a de ettecta coup ainta. etc.) involving u-an

euhiacta or (2) changaa In the research environ-out or new

intor-ation indicating greater riah to the hue-n eub acta than

exlated when the protocol wae previoualy reviewed a approved,

 

be of an future hel . leaae do not he it e
s-asao o: rnx isnvlaSa-T ' ' ' ‘° °°“t'°‘ “0

171.

  
    

Ph.D.

oxanne H. Meo

"‘IIIIIIIIIIIIIII“