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This is to certify that the

thesis entitled

The Impact of Caregiver Symptom Involvement on Levels
of Perceived Preparedness in Caregivers for Elderly,
Terminally Ill Cancer Patients

presented by
Sharon L. Kozachik

has been accepted towards fulfillment
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1M WWW-p.14

THE IMPACT OF CAREGIVER SYMPTOM INVOLVEMENT ON LEVELS
OF PERCEIVED PREPAREDNESS IN CAREGIVERS FOR ELDERLY,
TERMINALLY ILL CANCER PATIENTS

BY
Sharon L. Kozachik

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
THE IMPACT OF CAREGIVER SYMPTOM INVOLVEMENT ON LEVELS

OF PERCEIVED PREPAREDNESS IN CAREGIVERS FOR ELDERLY,
TERMINALLY ILL CANCER PATIENTS

BY
Sharon L. Kozachik

As terminal cancer care moves from the formal to the
home setting, family caregivers are faced with the tasks of
managing palliative care modalities and untoward effects of
terminal cancer. The objective of this research is to
determine how levels of caregiver involvement in symptom
management impacts his/her perceived preparation to care,
and if caregiver gender or living arrangements impacts
his/her perceived preparation to care. This secondary
analysis utilized a sample of caregivers whose elderly
patients, newly diagnosed with cancer, died while
participating in a longitudinal study. Participants were
accrued by convenience sampling and gave informed consent.
Symptom management and preparedness measures were obtained
through telephone interviews and self-administered
questionnaires. Data analysis were conducted using multiple
regression models. The impact that the independent
variables had on the dependent variable was not
statistically significant. Nurses in advanced practice must
assess caregivers for previous helping behaviors and

communication patterns with their patients.

This work is dedicated to my husband, Tom, who encouraged my
academic endeavors, read drafts of every required course
paper, graciously allowed numerous practice physical
assessments, and never complained when the house was messy.

iii

ACKNOWLEDGMENTS

The attainment of a goal is rarely the result of a
singular effort. This author gratefully acknowledges the
insights, assistance, wisdom, and support of her thesis
committee chair, Dr. Barbara Given. She has been generous
with her time, knowledge, and energy to facilitate my
professional and student development, and she has been one
of my role models. Thank you for believing in my abilities.

Gratitude is also due to Dr. C. William Given, one of
my thesis committee members, for his thoughtful and
insightful input, and support of this scholastic endeavor.
He has provided me with numerous learning experiences beyond
the scope of this thesis and has encouraged me to broaden my
academic horizons.

Finally, gratitude is due to Dr. Clare Collins, my
other thesis committee member, who provided much conceptual
input and constructive comments during the developmental
phase of this thesis. Her lectures and research are

inspiring, and she has also been one of my role models.

iv

TABLE OF CONTENTS

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

INTRODUCTION . . . .
Background of the problem

Problem Statement . . .
Definitions . . . . .
Symptoms Associated with
Cancer Treatments . . .
Caregiver Involvement in
Perceived Preparation to
Terminal Cancer . . . .

CONCEPTUAL FRAMEWORK . . . .

REVIEW OF LITERATURE . . . .

Symptom Experiences with
Terminal Illnesses . .
Caregiver Involvement in
Perceived Preparation to
Caregiving . . . . . .
Caregiver Gender . . . .

Terminal Cancer

“one.
3
09,000.

Symptom Management
care 0 O O O O O 0

Terminal Cancer and
Symptom Management
Care and its Impact

Caregiver Living Arrangements . . . . . . .

METHODS O O O O O O O O O O 0

Research Design . . . .
Study Sample . . . . . .

Data Collection Procedures

Operational Definitions
Measurement and Scoring
Data Analysis . . . . .

Protection of Human Subjects

Research Limitations . .

RESULTS 0 O O O I O 0 O 0
Description of the Sample
Answers to Research Questions

Other Findings . . . . .

Page
vii
viii

\IONH

p
omen

. 18
. 22

27

29
29
29
31
32
34
36

39

4O
4O
42
45

TABLE or CONTENTS (cont.)

DISCUSSION .
Sample .

Caregiver Symptom Recognition . . . . . . .
Caregiver Involvement in Symptom Management
Caregiver Perceived Preparedness to Care . .
Caregiver Gender . . . . . . . . . . . . . .
Caregiver Living Arrangements . . . . . . .

Discussion of Results with the Conceptual
Framework . . . . . . . . . . . . . . . . .

Results From the Research Questions . . . . . . . .
Implications for Advanced Practice Nursing in
Primary Care . . . . . . . . . . . . . . . . . . .
Recommendations for Further Research . . . . . . . .
SMARY O O O O O O O O O O O O O O O O O O O O 0 O O O 0
LIST OF REFERENCES . . . . . . . . . . . . . . . . . . .
APPENDICES

Appendix A:

Appendix B:
Appendix C:

Appendix D:

Appendix E:

Wave II Caregiver With Patient Telephone
Interview
Questionnaire Caregiver Symptom
Assistance . . . . . . . . . . .
Wave II Caregiver Self-Administered Booklet
Preparedness . . . . . . . . . . . . . . .
MSU Family Home Care Cancer Study Caregiver
Consent Form . . . . . . . . . . . . . . .
UCRIHS Approval for Original Family Home
Care For Cancer--A Community-Based
Model . . . . . . . . . . . . . . . .
UCRIHS Approval for Secondary Analysis . . .

vi

83

85

86

89
90

Table

Table

Table

Table

Table

Table

Table

LIST OF TABLES

Frequencies and Percentages of Sample
Demographic Characteristics . . . . . . .

Regression Analysis of the Independent
Variables and the Impact on the Dependent
variable 0 O O O O O I O O O O O O O O O

Caregiver Gender and Living Status Mean and
Standard Deviation of Preparedness and the
Impact on Perceived Preparedness . . . .

Top six Caregiver Reported and Assisted
Symptoms in Patients Prior to Death . . .

Top six Caregiver Reported Symptoms and Unmet

Need at the Wave Prior to Death . . . . .

Level of Perceived Symptom Management
Preparedness, Frequency and Percent . . .

Caregiver Demographic Characteristics and the

Mean and Standard Deviation of Caregiver
Reported Symptoms, Assisted Symptoms, and
Patient Unmet Needs . . . . . . . . . . .

vii

Page

LIST OF FIGURES

Figure 1: Social Cognitive Theory, Bandura (1986)

Figure 2: A Modification of the Bandura Model (1986),

Depicting Environmental Factors' Impact on
Behavioral Factors, and Behavioral Factors'

Impact on Personal Factors . . . . .

Figure 3: Modification of Study Conceptual Model

viii

Page

INTRODUCTION

Cancer is a disease of the aging, with 67% of cancer
deaths occurring after the age of 65 (American Cancer
Society, 1995). This cohort is the most rapidly growing
segment of the population (Kart, Metress, & Metress, 1992).
Thus, there are growing numbers of persons being diagnosed
and treated for cancer. As health care provision is shifted
from the institutional setting to outpatient and home
settings (Mor, Guadagnoli, & Wool, 1988), and patients are
discharged ‘sicker and quicker', greater numbers of family
members are being thrust into the role of caregiver.
Further, as cancer patients grow more frail, they become
much more dependent upon family members for assistance with
personal care tasks (dressing and bathing), instrumental
care tasks (shopping, cooking, and household activities),
administrative needs (acquiring medical care equipment and
consumable medical supplies, acting as an advocate with
insurance companies) (Mor, Guadagnoli, & Wool, 1988), and
management of symptoms.

Families assume these care tasks with little training
in the management of symptoms associated with either the
cancer illness or the treatment modality, or education

regarding the disease process or trajectory. Many

l

2

caregivers assume this role without previous caregiving
experience. If the patient is diagnosed in the advanced
stage of cancer, then family caregivers are forced to manage
complex patterns of symptoms for their patients, while
recognizing their patients' terminal illness status.
Family caregivers are profoundly affected by the patients'
disease. Beyond the emotional upheaval that occurs, there
are also great amounts of disruption to the caregivers'
personal, professional, and social roles, as well as
reassignment of family roles and obligations. How to best
prepare family caregivers to be involved in managing
symptoms, in light of the emotional experiences that
accompany terminal diagnoses, remains the greatest challenge
for health care professionals. Therefore, this research
will address how the caregiver's involvement in symptom
management will impact his/her perceived preparation to care
for a newly diagnosed, elderly cancer patient.
BBQKQZQHDQ_Q£_LDB_EIle£m

For patients diagnosed with cancer, there are three
possible goals: curing the disease, increasing survival
time, or improving quality of life. For terminally ill
cancer patients, palliation becomes the goal, and improving
the quality of the patient's life becomes the most important
outcome. Palliative care methods include chemotherapy,
radiation therapy, surgical resection, or no treatment other
than comfort measures, such as pain control. Chemotherapy

and/or radiation treatment may decrease the tumor burden,

3
slow the tumor growth, or prevent the tumor from increasing
in size. The ultimate goal of these treatment modalities is
to increase the quality of life for the terminally ill
patient. However, the untoward effects from these treatment
modalities are numerous and their management can be
difficult. Nausea, vomiting, fatigue, insomnia, pain, loss
of appetite, difficulty breathing, and behavioral/mood
changes are a few examples of the sequelae of terminal
cancer illnesses and the palliative therapies utilized to
facilitate increased quality of life and comfort for the
patients.

Although many studies have examined the relationship
between caregiver burden and psychosocial disequilibrium
(Pruchno, 1990; Moen, Robison, & Dempster-McClain, 1995;
Aneshensel, Pearlin, & Schuler, 1993; Stommel, Given, 8
Given, 1990; Schulz, Visintainer, & Williamson, 1990), few,
if any researchers, have looked at the caregiver's
involvement in rendering care to a patient, and how this
impacts the caregiver's perceived preparation to care at any
phase of the terminal illness.

What has also not been addressed in the literature is
how the caregiver's perception of the patient's experiences
with symptoms and/or the degree to which the caregiver is
involved in managing the patient's symptoms, impacts the
caregiver's perceived preparation to care. If a caregiver
is rendering symptom management assistance to a patient who

he/she perceives is experiencing six cancer or treatment

4
related symptoms, and is involved in managing all six, how
does this caregiver's response differ from the caregiver who
is rendering symptom management assistance to a patient who
he/she perceives is experiencing fifteen cancer or treatment
related symptoms, and is involved in managing only seven of
those symptoms. Do they perceive their preparation to care
similarly, despite the differences in their recognition of,
and involvement in, their patients' experiences with
symptoms? Or, do caregivers' experiences differ, and if so,
which caregiver reports greater perceived levels of
preparedness in relation to his/her involvement in
recognized symptom management, the caregiver who manages a
greater or lesser proportion of recognized symptoms?

This research examines the level of caregivers'
involvement in the management of symptoms for their
patients' with terminal lung, colorectal, breast, or
prostate cancer, and how the involvement in symptoms impacts
caregivers' perceived levels of preparedness to care.

Family members who take on the caregiving role do so,
often times, without prior knowledge or training in the
tasks of caregiving. If health care provision continues
with the trend toward fewer inpatient hospital days, same
day surgeries, and outpatient chemotherapy and radiation
therapy, then health care providers must be called upon to
ensure that their patients are being released to caregivers
who are mentally and physically prepared to provide the

requisite care needs. In addition, caregivers must be

5
educated regarding the disease process and trajectory, and
trained in the art and science of managing the sequelae of
not only the terminal cancer illnesses, but also the
palliative treatment modalities.

The information gleaned from this study can be utilized
by advanced practice nurses and other health care
professionals to develop, implement, and evaluate caregiver
educational/training programs and caregiver support groups.
The development and implementation of educational and
supportive groups for caregivers of terminally ill patients
will have a domino effect; caregivers will benefit from the
nurturing support network and knowledge attainment regarding
the illness trajectory of a terminal cancer, as well as the
management of symptoms that accompany a terminal cancer
illness. The terminally ill cancer patients will benefit by
having caregivers who are knowledgeable about their
illnesses and disease trajectories. Terminally ill cancer
patients will also benefit by having caregivers who have
knowledge regarding the means to most effectively manage the
ever changing symptom constellations that accompany the
terminal cancer and the various methods of treatment
utilized to improve the patients' quality of life.

Terminally ill cancer patients have the potential to
experience greater levels of physical and psychological
comfort if they have caregivers who are prepared to assume
the complex and time consuming tasks required to manage

their symptoms. Physical and psychological comfort in

6
patients are the goals of all health care providers,
regardless of the practice setting. Why should health care
goals be any different merely because the health care
provider is now a lay person, generally a family member or
friend, and the care provision is in a home setting?
Educated and supported caregivers, be they lay or
professional, should be more prepared to facilitate physical
and psychological comfort in their terminally ill cancer
patients, thus health care providers must explore this
avenue in order to enhance patient care and effect quality
outcomes for both patient and caregiver.
Problem_Statement

Family members are assuming caregiving roles with
little to no education, support, or preparation from the
formal health care system. The complexities involved in
providing health care in the home setting to terminally ill
cancer patients pose an even greater challenge when
chemotherapy, radiation therapy, and/or palliative care
modalities are prescribed to provide comfort to, and improve
the quality of life for, these patients.

The purpose of this study is to determine how the level
of caregiver involvement in symptom management at the last
interview wave completed prior to the patient's death
impacts the caregiver's report of perceived preparedness to

care 0

7
The research questions to be answered are:

1. During the period prior to the patient's death, is it
the number of symptoms the caregiver reported that the
patient experienced, the number of symptoms that the
caregiver was involved in managing, or the proportion
of symptoms reported by the caregiver that the
caregiver was involved in managing that predicts
caregiver perceived preparedness?

2. How does the caregiver's gender and living arrangements
further impact the caregiver's perceived preparedness?

Definitions
ganggz_sitgs. Lung cancer was estimated to be

diagnosed in 178,100 people in 1997, accounting for 13% of

all cancer diagnoses, and an estimated 160,400 deaths

occurred due to lung cancer (American Cancer Society, 1997).

Lung is the most common site for both cancer incidence and

mortality. The 5-year survival rate for late staged lung

cancer is only 2% (American Cancer Society, 1997).
Colorectal cancer was estimated to be diagnosed in

131,200 peOple in 1997, accounting for approximately 9% of

the new cancer diagnoses, and an estimated 54,900 colorectal

cancer deaths occurred in 1997, accounting for about 10% of

all cancer deaths (American Cancer Society, 1997).

Colorectal cancer is second to lung cancer in mortality,

with late staged colorectal patients who have distant

metastasis having a 5-year survival rate of only 7%

(American Cancer Society, 1997).

8

Approximately 181,600 new diagnoses of breast cancer
were made in 1997, with 1,400 of those diagnosed being
males, and an estimated 44,190 breast cancer deaths occurred
(American Cancer Society, 1997). Late staged breast cancer
patients who have distant metastasis have a 5-year survival
rate of 20% (American Cancer Society, 1997).

It has been estimated that 334,500 new cases of
prostate cancer were diagnosed in 1997, with 41,800 prostate
cancer deaths occurring (American Cancer Society, 1997).
Late staged prostate cancer has a 5-year survival rate of
30% (American Cancer Society, 1997).

When looking at lung, colorectal, breast, and prostate
cancer as a group, it is noted that in 1997 there was
expected to be a combined total of 825,400 new cases
diagnosed, with 301,290 anticipated fatalities due to these
four types of cancer. The American Cancer Society (1997)
estimated that there would be 1,382,400 new cancer diagnoses
(all types) with 560,000 deaths due to all cancer types in
1997. Lung, colorectal, breast, and prostate cancers
accounted for 60% of all newly diagnosed cancers and 54% of
all cancer deaths in 1997. Because these four cancer sites
accounted for more than half of all newly diagnosed cancers
and cancer deaths in 1997, it is important to understand and
learn from the experiences of not only the cancer patients,

but also their caregivers.

WWW:
Treatments

Hegyvary (1993) defined symptoms as the perceived
indicators of change in normal functioning as experienced by
patients. The symptoms associated with terminal cancer
include: Pain, nausea, anorexia, problems of infection,
bleeding, insomnia, fatigue, headache, difficulty breathing,
poor appetite, weight loss, cough, and mood changes
(American Cancer Society, 1995).

Symptoms associated with chemotherapy include: Fatigue,
nausea, loss of hair, vomiting, diarrhea, poor appetite,
weight loss, fever, dry mouth, mouth sores, change in taste,
bouts of perspiration, itching, bleeding/bruising, and mood
changes (Dodd, 1987). Radiation therapy can cause the
patient to experience skin irritation and/or burning at the
irradiation site, fatigue, pneumonitis, and enteritis
(American Cancer Society, 1995). Surgical resection of the
tumor can cause the patient to experience pain at the
surgical site, as well as fatigue, weakness, and insomnia.

: . I J l . 5 I I! l

Managing the myriad of symptoms that accompanies
terminal cancer and its palliative treatment modalities can
be a daunting task, even for an experienced health care
provider. Hegyvary (1993) described symptom management as
part of comprehensive health care that aims to treat both
disease and the manifestations of illness. Caregiver

involvement in symptom management is not a static entity,

10
rather involvement ebbs and flows as patients are able to
participate to greater or lesser degrees in their own
symptom management.
WW

Caregivers can be exposed to much education, training,
and supportive networks, yet still feel ill-prepared to
provide care to their loved ones (Rusniak & Murphy, 1995).
Is it attitude, cognition, or a combination of the two that
impacts the degree to which caregivers feel prepared to care
for their terminally ill cancer patients? Archbold,
Stewart, Greenlick, and Harvath (1990) viewed caregiving as
a role, and as such, explored how caregivers not only
learned the multiple facets of the caregiving role, but also
how caregivers evaluated their ability to fulfill this
multifaceted role. Their concept of preparedness was domain
specific, and related to things such as feeling prepared to
care for physical needs; to care for emotional needs;
planning for meals, rest, and recreation; and to help in the
management of symptoms.

Schumacher, Stewart, and Archbold (1998) refined the
original preparedness definition, analogizing preparedness
to readiness. They discussed its origin from role theory,
as well as how the various dimensions within the original
preparedness instrument refer to the corresponding caregiver
role domains.

Preparedness can have different meanings to different

caregivers. One caregiver may perceive him/her self as

11

prepared to care because of specialized knowledge and
skills. A second caregiver may perceive him/her self as
prepared to care because of a strong sense of commitment to,
and love for, the care recipient. A third caregiver may
perceive him/her self prepared to care because of religious
or moral/ethical values. Although all of these caregivers
perceive themselves as prepared to care, the perspectives
from which they base their perceived preparedness are vastly
different. Beyond the caregiver's perceived preparedness to
provide care, the caregiver must also consider his/her
perceived preparedness in relation to their patients'
terminal status. Caregivers are faced with the knowledge
that their loved ones will die, despite the care that is
rendered, and are forced to question their preparedness
within the context of death as the outcome.

Mastery is the control caregivers feel they are able to
impose over other forces that affect their lives; it
attributes patients' outcomes to the caregivers' abilities
'and efforts (Aneshensel, Pearlin, Mullah, Zarit, & Whitlach,
1995). Lawton, Kleban, Moss, Rovine, and Glicksman (1989)
view caregiving mastery as the positive view of the
caregiver's ability and ongoing behavior during the
caregiving process; it is a self-perception that stems from
the occurrences during the course of caregiving. Although
preparedness and mastery are concepts that address the
caregiver role-taking from the caregiver's's perception,

they address two separate issues. One can perceive

12
preparedness to care and not necessarily perceive a sense of
mastery over the role.

Benner (1984) speaks of the role evolution from novice
to expert. The novice has had no experience of the
situation in which he/she is expected to perform, thus the
beginner is provided with rules by which to operate. The
expert is a polar opposite of the novice; rules that govern
actions are replaced by intuitive actions. The expert
operates from a global grasp of the situation at hand.

Since many caregivers enter the caregiving situation as a
novice, they may require numerous rules and
education/training sessions to guide them in their guests
for managing the complex symptoms that arise in their
patients.

The blending of the concept preparedness along with
Benner's (1984) role evolution of novice to expert, provides
the basis for the definition of preparedness for this paper. ‘
Caregiver preparedness is developed through experiential
knowledge; the caregiver perceives preparedness after being
engaged in and experiencing the caregiver role task of
involvement in managing symptoms.

Because terminal cancer care can be both physically and
emotionally exhausting work, it is imperative that
caregivers perceive that they are prepared to handle the
fluid nature of the patient's abilities to provide self-
care, as well as the physical and psychosocial sequelae of

the disease process.

13
TerminalJancsr

An advanced, progressive cancer that does not respond
to active treatment modalities, such as chemotherapy or
radiation therapy, is termed terminal (American Cancer
Society, 1995). Ham and Sloane (1997) define terminal
illness as one where the patient's life expectancy is six
months or less.

If the assumption is correct that each newly diagnosed,
terminally ill lung, colorectal, breast, and prostate cancer
patient had an involved caregiver in 1997, then there were
301,290 newly tenured caregivers last year. Terminally ill
cancer patients experience numerous untoward effects from
the illness and the treatment modality(ies) used, often
occurring in symptom clusters. The caregivers who are in
charge of the day to day management of these terminally ill
patients do so at various levels of physical,
psychological, and educational preparation.

Conceptual Framework

The assumption of this study is that the level of a
caregiver's involvement in symptom management for an
elderly, terminally ill, cancer patient will impact the
level of the caregiver's perceived preparation to care. The
conceptual model used to guide this study is adapted from
the Social Cognitive Theory developed by Bandura (1986).
Bandura (1986) developed this theory of human motivation and
action based on the concept of triadic reciprocality: The

belief that behavioral factors, cognitive/personal factors,

l4
and environmental factors act and react with the others in a
mutual, but not necessarily equal, manner (see Figure 1).
Behavioral factors include the person's physical action(s).
Cognitive/personal factors include thoughts, feelings,
values, attitudes, motives, knowledge, problem-solving, and
self-efficacy. Environmental factors include social
sublets, role relationships, family/household membership,
socioeconomic status, and social institutions. Because
individuals have unique behavioral, cognitive/personal, and
environmental factors, the action/reaction potentials of

each individual's triad will vary.

 

 

 

 

 

 

 

Behavioral
Factors
Environmental Cognitive/Personal
¢ 4
Factors Factors

 

 

 

 

 

 

E1gnrg_1. Social Cognitive Theory, Bandura (1986).

15

The conceptual model utilized in this study deviates
from the Bandura model, in that the premise claims that the
caregiver's environmental factors will act upon the
caregiver's behavioral factors, and that the caregiver's
behavioral factors will impact his/her cognitive/personal
factors. This study examines how the level of caregiver
involvement in symptom management impacts the level of
perceived preparation to care for the caregiver for a
terminally ill, elderly cancer patient (see Figure 2).

Cancer in the terminal phase will present with similar
symptom constellations, namely pain, fatigue, dyspnea,
anorexia, and insomnia (Lynn, Teno, Phillips, Wu, Desbiens,
Harrold, Claessens, Wenger, Kreling, & Connors, 1997). As
the terminally ill, elderly cancer patient proceeds through
his/her illness trajectory, the decline in functional and
self-care abilities will impact the degree to which the
caregiver will be needed to manage the patient's symptoms.
The addition of chemotherapy or radiation therapy brings
with it fatigue, nausea, vomiting, dry mouth, and poor
appetite. Many individuals with cancer experience pain due
to the burden imposed by the size of the tumor or due to
metastasis of the cancer to other sites, such as liver or
bone. If comfort measures, such as pain control, are the
only treatment options, then the addition of narcotic
analgesia to promote comfort may cause the patient to

experience drowsiness and/or an altered sensorium, further

16

 

 

Environmental Factors
~Terminal stage of patient's cancer
-Gender of the caregiver
«Caregiver living arrangements

 

 

 

 

 

Behavioral Factors

-Recognition of symptoms . Cognitive/Personal Factors

-Involvement in symptom -Perceived preparation to care
management

 

 

 

 

 

Eignzg_zL A Modification of the Bandura Model (1986),
Depicting Environmental Factors' Impact on Behavioral
Factors, and Behavioral Factors' Impact on Personal Factors.

limiting the patient's capacity to participate in self-care
measures to alleviate other manifesting symptoms.

The Caregiver Symptom Assistance categories include:
nausea, pain, trouble sleeping, fatigue, difficulty
breathing/shortness of breath, diarrhea, coordination
problems, vomiting, poor appetite, weight loss, fever,

cough, dry mouth, constipation, and frequent urination.

l7

Caregiver Preparation to Care categories include
prepared to: Care for the patient's physical needs; care for
the patient's emotional needs; find out about and set-up
physical needs; care for the patient's emotional needs; find
out about and set-up formal services for the patient's care;
care for the patient's medical/nursing treatments; manage
bills, finances, and insurance forms related to the
patient's care needs; plan for the patient's activities;
manage the patient's behavioral problems; manage equipment
and techniques necessary to care for the patient; help in
managing the patient's symptoms; discuss with health care
providers the problems the patient is having; help the
patient get cancer treatments; find the information the
caregiver needs about cancer; and overall for the role of
caregiving.

The sociodemographic variables (environmental factors)
for the caregivers in this study include caregiver gender
and caregiver living arrangements. These variables are
believed to impact the caregivers' perceived preparation to
care. Living arrangements will facilitate caregivers'
recognition of symptoms experienced by their patients', and
impact the levels of involvement of the caregivers in the
management of their patients' symptoms. Caregiver gender
may further impact the caregiver's perceived preparation to
care, as females tend to be socialized into nurturing roles

more than males.

18

The sociodemographic variables for the patients (also
environmental factors) in this study include age, and
terminal staging of cancer. These variables are also
believed to impact the caregivers' levels of involvement in
the management of their patients' symptoms, as well as the
caregivers' perceived preparation to care.

Review of Literature

Research literature involving caregivers involved in
symptom management for their cancer patients is limited.
Much of the research surrounding caregiver activities for
cancer patients involves assistance with Activities of Daily
Living or Instrumental care tasks. Caregiver preparedness
is a unique concept, and has been addressed by a select few
researchers.

‘no on '30- -. -_ ' . am... .. - :go 0 .‘ -q.. .:

Illnesses

Pereira, Hanson, and Bruera (1997) administered Mini
Mental State Examinations (MMSE) to 321 terminally ill
cancer patients who were admitted to a palliative care unit
over a 26 months time span. Each patient was tested at the
time of admission, and thereafter an average of 4.7 times,
.occurring every 4.9 days. The cancer sites under study
included: gastrointestinal (n=86), genitourinary (n=75),
lung (n=68), breast (n=44), head and neck (n=16), unknown
(n=11), other (n=11), hematologic (n=9), and sarcoma (n=1).
The mean age of the patients under study was 64.2 years.

Two hundred and thirty-one of the patients died during

19
admission and 90 patients were discharged. One hundred and
forty—two patients had abnormal MMSE scores on admission,
176 patients had abnormal MMSE scores at the time of either
death or discharge. Of the 240 patients who were tested two
or more times, 99 patients had normal initial and final MMSE
scores, 54 had normal initial but abnormal final scores, and
62 had abnormal initial and final scores. When
abnormalities were discovered, diagnostics were conducted to
assess for the presence of opioid toxicity, infection,
dehydration, brain metastases, uremia, renal failure,
hypercalcemia, sepsis, and hypoxia. Also, complete
medication reviews were conducted. Corrective measures,
such as medication adjustment/discontinuation or
rehydration, were undertaken when probable cause(s) could be
determined.

Kurtz, Kurtz, Given and Given (1996) studied a sample
of 216 patient-caregiver dyads to determine the level of
concordance between cancer patient and caregiver reported
symptoms. The cancer sites included were breast, lung,
cola-rectal, lymphoma, gastrointestinal, prostate,
gynecologic, and other. The top five caregiver reported
symptoms were (in descending order): fatigue, insomnia, loss
of appetite, pain, and nausea. Site and stage of cancer
will influence not only the type of symptom experienced, but
also the magnitude of the symptom experience. The overall
accuracy of caregiver versus patient symptom reports was

71%.

20

Ferrell, Taylor, Grant, Fowler, and Corbisiero (1993)
reported that two-thirds of all patients with advanced
cancer experience significant pain. They studied ten
patient-caregiver-nurse triads to ascertain special problems
associated with pain management, identified by the patients,
caregivers, and the home care nurses. The cancer diagnoses
under study were prostate (n=3), lung (n=2), breast (n=1),
colon (n=1), myeloma (n=1), thyroid (n=1), and vulvar (n=1).
The caregivers identified a sense of futility in managing
the patients' pain and an awareness of impending death. The
sense of futility was most frequently attributed to
ignorance and a lack of trained support.

Pickett, Cooley, Patterson, and McCorkle (1996) studied
65 post radical retropubic prostatectomy cancer patients, to
outline how these patients could experience improved quality
of life from the utilization of comprehensive home care
services. The patient (n=65) reported symptoms included
incontinence (100%), cough (89%), pain intensity (74%),
nausea frequency (66%), changes in breathing (65%), poor
outlook (62%), nausea intensity (59%), pain frequency (55%),
changes in appearance (48%), lack of concentration (40%),
fatigue (34%), changes in appetite (28%), inability to sleep
(23%), and bowel changes (11%).

Sarna and McCorkle (1996) described the symptom
experiences of lung cancer patients, citing changes in
mental status, pain, fatigue, dyspnea, weight loss,

anorexia, and cachexia in progressive disease. Further,

21

these patients report an almost constant requirement of
care, diminished quality of life, and decline in their
physical health.

Hinton (1994) examined the experiences of 77 terminally
ill cancer patients, with a mean age of 65 years, and their
caregivers in the United Kingdom. The patients identified
pain, weakness, nausea/vomiting, malaise/fever,
constipation, dyspnea, anorexia, immobility, cough,
diarrhea, edema, ulcer/discharge, dysphagia, and
incontinence as symptoms that some, but not all of them, had
experienced. Cancer diagnoses included: lung (n=18),
stomach (n=11), bowel/rectum (n=11), breast (n=9), and other
(n=28). The caregivers identified pain, weakness, dyspnea,
diarrhea, and dysphagia as causing peak distress for them.

Lynn and colleagues (1997) studied 3357 terminally ill
patients, with a mean age of 66.6 years, who had surrogate
decision makers in order to better understand the experience
of dying. The patients carried diagnoses of acute
respiratory failure, multiple organ system failure, chronic
obstructive pulmonary disease, congestive heart failure,
cirrhosis, coma, colon cancer, or lung cancer. Of the
patients who were conscious prior to death, 40% had severe
pain, more than 50% experienced severe dyspnea in the last
three days of life, severe confusion was experienced by
nearly 25%, less than 13% experienced severe nausea, and 80%

suffered from severe fatigue. The surrogates reported that

22
73% of the patients experienced great difficulty in
tolerating these symptoms.

The literature reviewed offered consistent views of the
symptom experiences of patients with terminal cancers or
other terminal illnesses. Cognitive deficits (Pereira,
Hanson, 8 Bruera, 1997), pain (Ferrell, Taylor, Grant, 8
Corbisiero, 1993; Sarna, 8 McCorkle, 1996; Kurtz, Xurtz,
Given, 8 Given, 1996; Lynn and colleagues, 1997), fatigue,
nausea, loss of appetite (Sarna, 8 McCorkle, 1996; Kurtz,
Kurtz, Given, 8 Given, 1996; Hinton, 1994) are but a few of
the symptoms with which terminally ill cancer patients and
their caregivers must contend. Kurtz, Kurtz, Given, and
Given (1996) introduced the caregiver as proxy for reporting
the patient's symptoms, providing a different avenue for
assessing not only efficacious but also deleterious effects
of both active and palliative treatment modalities for
cancer.

WW

Stetz (1987) examined the caregiver demands from 65
terminally ill cancer patients. Sites of cancer were: lung
(n=20), prostate (n=11), breast (n=7), with the remainder of
the sites not listed; the authors reported each unnamed site
had fewer than seven subjects per category. Sixty-nine
percent of the caregivers reported they were managing the
imposed changes within the patients, such as coping with
alterations in the physical and/or emotional state of the

ill patient.

23

Schumacher (1996) investigated the acquisition of the
caregiver role in 19 caregivers for patients with
gastrointestinal, lung, genito-urinary, breast, or
gynecological cancer, or lymphoma. Care tasks were
organized into twelve domains, one being symptom management.
Care delivery was divided into three patterns: self-care,
caregiving, and collaborative. This recognizes that
patients' abilities to manage their symptoms run along a
continuum from total self-care to total dependency.
Caregivers described their experiences within this care
continuum, from performing all aspects of symptom
management, to discussing presence of symptoms with the
patients and collaboratively deciding how to best alleviate
the manifested symptom. She further described a phenomenon
termed task specialization, where some care tasks are
carried out solely by one member of the dyad and other care
tasks are carried out by the other member of the dyad, based
on expertise.

Given and Given (1994) described the family caregiver's
involvement in symptom management varies, and includes
direct care, complex monitoring and decision making, and
emotional support. Further, the symptom distress
experienced by the patient varies according to numbers of
symptoms, severity of the experience, and frequency of the
occurrence. This variance will determine not only the type
of involvement, but also the level of involvement required

from the family caregiver.

24

Given and Given (1994) discussed the management
strategies utilized by caregivers to alleviate pain in their
patients. Determining the source, nature, and amount of
pain, then utilizing pharmacologic and non-pharmacologic
methods, such as positioning, distraction, emotional
support, and applying heat, cold, or lotions to the site.
Other symptoms that often require management by the
caregiver include nausea, loss of appetite, and fatigue.
When symptoms occurred in groups, or constellations, they
often overwhelmed the caregiver and impeded his/her ability
to effect any positive change in them.

Caregiver involvement in the management of cancer and
treatment related symptoms can be intense and overwhelming.
Caregivers are providing direct care and monitoring for
efficacy of their efforts (Stetz, 1987; Given, 8 Given,
1994), some of the symptom management tasks are ‘delegated'
based on a continuum of the patient's capacity to perform
self-care and/or based on the idea of task specialization
(Schumacher, 1996). Caregivers experience greater
challenges when symptoms occur in clusters (Given, 8 Given,
1994), which can overwhelm the caregiver. These authors did

not incorporate the concept preparedness in their studies.

-0 ' ‘o. - o. o - r .00 o ‘ no. 0. - 'o .o

Rusniak and Murphy (1995) examined 30 caregivers for
their spouses, who had been recently diagnosed with cancer,
to determine the relationship between the caregivers'

knowledge of cancer care and their perceived preparedness

25
for the caregiving role. The caregivers ranged in age from
65 years to 84 years (x=71.7). The patients ranged in age
from 65 years to 87 years (x=74.1). Eighty-three percent of
the caregivers were female. The average length of time
elapsed since the initiation of caregiving was 4.1 months.
The caregivers reported a moderate level of perceived
preparedness to care. Of interest, level of caregiver
specific education was negatively correlated with perceived
preparedness to care (r=-.37; p=.02).

Archbold, Stewart, Greenlick, and Harvath (1990)
gathered data from 78 patient-caregiver dyads to examine the
impact that mutuality and preparedness have on caregiver
role strain. The care recipients ranged in age from 65 to
93 years of age. The caregivers were predominantly female
(62%), with 19% being the wife of the care recipient. The
aspects of role strain, strain from direct care, increased
tension, and global strain, appeared lower when higher
levels of perceived preparedness were reported by the
caregivers. The authors did not address the types of care
that were being provided by the caregivers in their sample.

Archbold, Stewart, Miller, Harvath, Greenlick, Van
Buren, Kirschling, Valanis, Brody, Schook, and Hagan (1995)
studied 22 patient-caregiver dyads, with 11 assigned to each
group, control versus experimental, to pilot a system of
home health nursing interventions, PREP (PReparedness,
Enrichment, Predictability), designed to increase the

preparedness and competence of family caregivers, as well as

26
to enrich the process of caregiving. In analyzing the data,
there were no significant differences between the
experimental and control groups on the strain measures,
rewards of caregiving, or two depression scales. But,
caregivers in the group that received the PREP intervention
experienced enhanced preparedness, enrichment, and
predictability in the caregiving process. The authors in
this article did not address specific caregiving tasks that
were being performed.

Caregiver preparedness was an elusive topic in the
research literature. The literature that was devoted to
preparedness, discussed the relationships between caregiver
perceived preparedness to care and psychosocial outcomes for
the caregiver, such as role stain, depression,
predictability, and enrichment. Rusniak and Murphy (1995)
found that caregiver-specific education and caregiver
perceived preparedness to care were negatively correlated,
whereas Archbold, Stewart, Miller, Harvath, Greenlick, Van
Buren, Kirschling, Valanis, Brody, Schook, and Hagan (1995)
found that caregivers who were exposed to the PREP
intervention experienced enhanced preparedness to care.
W1:

Societal expectations of who shall assume the role of
caregiver tends to fall onto women, as women are socialized
to be nurturing and the caring, thus caregiving is felt to
be an extension of the normal female role (Allen, 1994).

Rusniak and Murphy (1995) found that 83% of their caregiver

27

sample were women, and Archbold, Stewart, Greenlick, and
Harvath (1990) finding that 62% of their sample were women.
Allen (1994) investigated the gender differences in spousal
caregiving in a sample of 353 married individuals with
cancer who were receiving outpatient treatment. The sample
of caregivers included 188 (53%) female spousal caregivers
and 165 (47%) male spousal caregivers. The female patients
(nF165) reported a mean of 2.2 (SD=1.3) symptoms and the
male patients (n;188) reported a mean of 2.1 (SD:1.3)
symptoms. Male patients received more assistance (45%) with
personal care (which included involvement in symptom
management) from their spouses than did female patients,
where 30% received assistance with personal care.
: . I' i E l

Tennstedt, Sullivan, McKinlay, and D'Agostino (1990)
studied 429 informal caregivers for frail elders to
determine use of community-based formal services. Seventy-
nine percent (340) of the patients received most of their
help from their informal caregivers. The authors determined
that those patients who lived alone relied more on formal
services, and that elders who co-resided with a caregiver,
particularly a spousal caregiver, were more apt to not
utilize formal services, regardless of their levels of
frailty.

Tennstedt, Crawford, and McKinlay (1993) examined 445
patient-caregiver dyads to determine if co-residence of a

frail elder with a caregiver resulted in a kinship primary

28
group similar to a marital bond. They examined types and
amounts of both informal and formal care delivery and found
that co-residing caregivers had higher rates of informal
care provision than non-co-residing caregivers, regardless
of the patients' relationship to them.

Patients who co—reside with their caregivers are more
apt to utilize only the informal services provided to them
through their co-residing caregivers, regardless of levels
of frailty. Although these articles did not specifically
address the caregivers' levels of involvement in symptom
management, they did address levels of involvement in
personal care (authors' terminology), beyond Activities of
Daily Living and Instrumental care tasks.

The most consistent findings within the research
literature surrounded the symptom experiences of terminally
ill cancer patients and the symptom involvement of the
caregivers. Caregiver perceived preparedness was not found
to exist consistently within the cancer care research. This
inconsistency could be attributed to the unique traits
inherent within each caregiver that are molded through life
experiences, such as personality, self-esteem/self-concept,
and knowledge base.

The literature reviewed provides some support for the
conceptualization of this study. The environmental factors
(co-residency, caregiver gender) tend to drive the
behavioral factors (involvement in personal care) for the

caregivers that were studied. The one aspect of the model

29
that was not addressed completely in the literature was how
the environmental factors and behavioral factors impacted
the caregivers' personal/cognitive factors (perceived
preparedness to care).
Methods
Wain

These data are from a sub-sample taken from the larger
study, Family Home Care for Cancer--A Community-Based Model,
Grant #2 R01 NR/CA01915, funded by the National Institute
for Nursing Research and the National Cancer Institute,
Barbara A. Given, PhD, RN, FAAN, and Charles W. Given, PhD,
Principal Investigators.

The original study was an inception cohort of elderly
patients with cancer and their caregivers. This
longitudinal study was a collaborative effort between
Michigan State University (MSU) College of Nursing; MSU
College of Human Medicine, Department of Family Practice;
the Cancer Center at MSU; and the MSU Cancer Treatment
Consortium.

Stnd¥_Samnle

The patients and caregivers were accrued into the
original study via convenience sampling from 30 sites,
including hospitals, physicians' offices, and community
cancer treatment settings where the patients sought
treatment for their newly diagnosed cancers. These settings
were located in various Michigan cities, including Lansing,

Grand Rapids, Kalamazoo, Saginaw, Flint, and St. Joseph, as

30
well a site in Indianapolis, Indiana. Eligibility criteria
for the patient included the following conditions: The
patient had to be 65 years of age or older; newly diagnosed
with lung, colorectal, breast, or prostate cancer; currently
undergoing some form of treatment beyond palliation; and the
patient could not have received treatment within the
previous three years for another cancer. The patients
included in this sub-sample all died after the Wave 2
interview (conducted at twelve weeks after entry into the
'study) but prior to the Wave 3 interview (conducted at
twenty-four weeks after entry into the study).

In order for a caregiver to be eligible for
participation, he/she had to be identified by the patient as
the primary person who was involved in his/her home care,
and the identified caregiver had to be available to provide
care to the patient over the next 12 months. This caregiver
could be a family member (spouse, child, sibling,
niece/nephew), or an unrelated significant other (neighbor,
friend, fellow church member). The identified caregiver
could participate in the study with or without the patient's
participation.

The sub-sample for this study consists of 41 caregivers
for patients with cancer. The eligibility for entry into
this secondary analysis included: Family or unrelated
significant other caregivers for elderly patients who were

newly diagnosed with lung, colorectal, breast, or prostate

31
cancer who died prior to completing the larger longitudinal
study.

A search was performed on the data base to identify all
patients who had died and who had an identified caregiver
participating in the study. Another query was performed,
seeking the last telephone interview that was completed by
each caregiver prior to the patients' deaths.
mm

Data collection for the larger, longitudinal study
began with an initial screening by a trained nurse
recruiter. Within two-weeks following identification and
consent, both patient and caregiver were contacted via
telephone, by a trained interviewer, to establish a day and
time to complete the first wave interview. Each telephone
interview required 45 minutes to one hour of each
participant's time. The patient and caregiver were
interviewed separately, and each interview consisted of
structured, closed-ended questions. These interviews
occurred post-operatively and within two weeks of the time
that the patient received chemotherapy or radiation. In
addition to the telephone interview, a Self-Administered
Booklet (SAB) was mailed to each participant, to be
completed and returned. Subsequent data collection,
interview and SAB, occurred at 12, 24, and 52 weeks, as well
as medical records audits.

The interviewers were health professionals students.

Interviewer training consisted of: a) mock interviews, b)

32
taped interviews, c) monthly interviewer meetings during the
data collection period, d) monthly quality assurance
completed on 10% of each interviewer's case records, and e)
monthly quality assurance of interviewing technique, via
submitted taped interview, to ensure that the protocols of
the research study were being adhered to. Each interviewer
was provided with an interviewer manual that provided
explicit instructions/information regarding the aims,
protocols, and policies of the research study.

For this secondary analysis, only the caregiver was
utilized as the source of data. The date of death for each
patient was recorded in the data management system, and from
this date, the last wave interview and SAB completed by the
caregiver, prior to the patient's death, were utilized to
obtain the necessary data. The questions utilized from the
telephone interview queried the caregiver about the
patient's symptom experience and whether or not the
caregiver provided any assistance to the patient in response
to the symptom. The questions utilized from the SAB queried
the caregiver about his/her perceived preparation to care
for the patient.

: ll 1 D E' 'l'

The independent variables in this study were: 1) the
number of patient symptoms reported by the caregiver within
the previous two-weeks; 2) the number of patient symptoms
the caregiver was involved in managing within the previous

two-weeks; and 3) the proportion of the symptoms the

33
caregiver was involved in managing. This information was
gleaned from the Activities of Symptom Management
Assistance.

The caregivers were asked to respond to queries
regarding the presence of symptoms, within the previous two-
weeks, in the patients. The Activities of Symptom
Management Assistance questions consisted of 15 symptoms:
nausea, pain, trouble sleeping, fatigue, difficulty
breathing/shortness of breath, diarrhea, coordination
problems, vomiting, poor appetite, weight loss, fever,
cough, dry mouth, constipation, and frequent urination. If
the caregiver responded affirmatively to a symptom, then
further query was performed to ascertain if the caregiver
provided any assistance to the patient in response to the
symptom.

The dependent variable in this study was caregiver
perceived preparation to care. Caregiver perceived
preparedness to care is defined as how well prepared a
caregiver feels to perform a set of caregiving tasks from
the Caregiving Preparedness category. The data for the
dependent variable were gathered from the completed SAB.

The Caregiver Preparedness category consists of queries
to caregivers regarding 12 tasks of care, including caring
for the patient's physical needs; caring for the patient's
emotional needs; finding out about and setting up formal
services for the patient; caring for medical/nursing

treatments for the patient; managing finances, bills, and

34
insurance forms for the patient; planning for activities for
the patient; managing equipment and techniques for the
patient; helping in the management of the patient's
symptoms; discussing with the patient's doctors any problems
the patient is having; helping the patient get to cancer
treatments; and finding the information the caregiver needs
about cancer. These questions ask the caregiver to consider
how well prepared he/she perceives him/her self in carrying
out these tasks. The Caregiver Preparedness category also
consists of one question which asks the caregiver to
consider his/her preparation for being a caregiver in
general.

The sociodemographic characteristics of the patient
include: 1) age, 2) site of cancer, and 3) terminal stage of
cancer. Patient age was measured in years. Patient site of
cancer includes: 1) lung, 2) colorectal, 3) breast, and 4)
prostate. Patient terminal stage includes those who
deceased within six months of beginning the study.

The sociodemographic characteristics of the caregiver
includes: 1) gender, and 2) living arrangement. Caregiver
gender includes: 1) female, and 2) male. Caregiver living
arrangements includes: 1) lives with the patient, and 2)
does not live with the patient.

W

The larger study, Family Home Care for Cancer-~A

Community-Based Model, utilized two scales to collect data

from the caregivers regarding their involvement in

35
assistance with managing symptoms (see Appendix A) and their
perceived preparation to care (see Appendix B).

The Caregiver Symptom Assistance categories were
ascertained by querying the caregiver regarding whether or
not the patient either had or complained of a listing of 15
illness and treatment related symptoms, with responses being
(1) yes, or (2) no. If the caregiver responds affirmatively
to any symptom, then the caregiver is asked whether or not
assistance to the patient was rendered in response to that
symptom, with responses being (1) yes, or (2) no. The
Caregiver Symptom Involvement scale did not have a
calculated Cronbach's alpha from its use in the original
longitudinal study. It appears to be a valid measure and
has been utilized extensively in research studies. The
caregiver proxy of the patient's symptom experience summated
scale ranged from 0-15. The Caregiver Symptom Assistance
summated scale ranged from 0-15.

Preparedness categories were ascertained through the
SAB by querying the caregiver regarding how well prepared
he/she felt in performing twelve different aspects of the
caregiving role and one global assessment of the total
caregiving role. The responses were on a four-point Likert
scale: 1) not at all prepared, 2) not too well prepared, 3)
pretty well prepared, or 4) very well prepared. Cronbach's
alpha for the Preparedness scale is .85. The Preparedness

summated scale ranged from 13-52.

36
W

.Research Question 1 seeks to determine which aspect of
symptom involvement predicts caregiver perceived preparation
to care, the number of patient symptoms reported by
caregiver proxy, the number of symptoms that the caregiver
is involved in managing, or the proportion of the symptoms
experienced by the patient that the caregiver is involved in
managing. This question will be answered utilizing multiple
linear regression techniques;

First, a Pearson Product Moment correlation will be
performed to examine correlations among all three
independent variables. If all three bivariate correlations
are less than .60, then each independent variable will be
entered step-wise into the regression equation, with the
number of caregiver reported symptoms entered first, to see
how it predicts the dependent variable. If the three
bivariate correlations are greater than .60, then each
independent variable must be entered separate, because any
large inter-correlations between the independent variables
can substantially affect the results of the multiple
regression analysis. Next, the number of symptoms the
caregiver was involved in managing will be added to the
regression to see if its addition accounts for additional
variance within the dependent variable. Finally, the
proportion of symptoms the caregiver was involved in
managing to the number of symptoms the caregiver reported

the patient experienced will be added to the regression to

37
determine if this addition accounts for further variance
within the dependent variable.

Once these regressions are completed, the addition of
caregiver characteristics, relationship to the patient and
living arrangements, will be added as co-variates, to
determine if these further impact the dependent variable.
W

In the larger study, Family Home Care for Cancer--A
Community-Based Model, Grant #2 R01 NR/CA01915 patients were
initially approached, by a project staff member, while
hospitalized, to introduce the study, discuss the process
(interviews and SABs), and inquire if they were interested
in participating. Each hospital from where patients were
recruited agreed to allow the project staff members to
recruit their patients, and the Oncologists were also
appraised of the research study and its aims.

Patients were asked to identify a primary caregiver,
who would be willing to assist them with care needs
throughout the following year. Caregivers could participate
in the larger longitudinal study with or without the patient
participating. Patients and caregivers who agreed to
participate signed a consent form (see Appendix B).
Participants had the following rights: 1) to withdraw from
the study at any time; 2) to ask questions about their role
in the research study; and 3) to refuse to answer any

questions posed to them.

38

Anonymity and confidentiality of all research
participants were protected by the researchers via assigning
case numbers to each participant. All instruments were
labeled using the case identification number. The data
could not be linked to any of the participants individually.
The signed consent forms are on file within the Family Care
Studies department and are accessible only to the Principal
Investigators. The original study, Family Home Care for
Cancer--A Community-Based Model, Grant #2 R01 NR/CA01915,
was approved by the University Committee on Research
Involving Human Subjects (UCRIHS) at Michigan State
University (see Appendix C). This UCRIHS approval is
reviewed on a yearly basis while the data collection is in
progress.

Approval to conduct the secondary analysis was sought
by this researcher, and approved by UCRIHS prior to
initiation of the data analysis (see Appendix D). A sub-
sample from the original longitudinal study is being
utilized for this secondary analysis. As previously
reported, all necessary consent forms are signed and
currently on file. Data for this secondary analysis will be
taken from the last wave, caregiver interview that was
conducted prior to the patient's death. The data provided
for this secondary analysis will not contain any participant
identifiers. There are no anticipated risks to any of the

participants from the conduction of this secondary analysis;

39
the data have already been collected and no further
participant contact will be required.

The results of this research will not be explained to
the participants unless they request such explanation. In
the event that the results from this secondary analysis are
published, analyses may not identify any individuals,
however, references to the cohort as a whole are
permissible.

ResearcLLimitations

The original study utilized convenience sampling to
acquire its study participants. Self-selection into
research may impose extraneous characteristics that while
not part of the study, may influence the analyses due to
influence of or relatedness to the variables of interest.
This self-selection imposes a threat to this study's
internal validity.

The lack of random sampling within the original study
and the small sample size for the secondary analysis imposes
a threat to this study's external validity, as well as
limits the extent to which the results can be generalized to
the population.

Co-morbid health conditions will impact patients'
symptom experiences. These conditions, although queried for
in the original study, are not being examined within this
secondary analysis and they impose a threat to the study's

internal validity.

4O
iPrevious cancer caregiving experience was not queried
in tame original study. Previous experience in cancer
caregiving will impact the level of perceived preparedness
to care for a caregiver and is imposes a threat to the
study's internal validity.

The small sample size (n=41) utilized for this study
greatly hinders the study's ability to be generalized to the
larger target population. This limitation introduces a
threat to the study's external validity, however, it can
serve as an exploratory study to examine patterns of
caregiver symptom involvement and to generate other research

questions.

Results
D . l' E I] S J

The sample consisted of 41 caregivers; with four
(11.4%) of the caregivers in the 40-49 years age range, five
(14.3%) of the caregivers in the 50-59 years age range,
fifteen (42.9%) of the caregivers in the 60-69 years age
range, and eleven (31.4%) of the caregivers in the 70 years
and older age range. There were six cases in which the
caregiver age was not available.

Thirty-five (85.4%) of the caregivers were female and
six (14.6%) were male. Thirty-four (82.9%) of the
caregivers lived with their patients and seven (17.1%) of
the caregivers resided in a domicile other than that of

their patient (see Table 1).

41

Table 1.

MW:

 

Demographic Characteristics in i

 

Caregiver Age

40-49 years 4 11.4
50-59 years 5 14.3
60-69 years 15 42.9
70 years and above 11 31.4
* missing values 6

Caregiver Gender

Female 35 85.4

Male 6 14.6
Caregiver Lives with Patient

Yes 34 82.9

NO 7 17.1
Caregiver Relationship to Patient

Spouse 28 75.7

Non-spouse 9 24.3

* missing values 4

Patient Age

65-74 years 24 58.5

75 years and above 17 41.5
Patient Gender

Female 14 34.1

Male 27 65.9
Patient Diagnosis

Breast 1 2.4

Colon 5 12.2

Lung 31 75.6

Prostate 4 9.8

 

The patients for whom this sample of caregivers
rendered care were at least 65 years old. Twenty-four

(58.5%) of the patients were in the 65-74 years age range

42
and seventeen (41.5%) of the patients were in the 75 years
iand older age range.

Fourteen (34.1%) of the patients were female and 27
(65.9%) of the patients were male. The patients within this
sample had cancer diagnoses of breast (n=1, 2.4%), colon
(nss, 12.2%), lung (n=31, 75.6%), or prostate (n=4, 9.8%)
(see Table 1).

WW

1. During the period of time prior to the patient's death,
is it the number of symptoms the caregiver reported
that the patient experienced, the number of symptoms
that the caregiver was involved in managing, or the
proportion of symptoms experienced by the patient that
the caregiver was involved in managing that predicts
caregiver perceived preparedness?

During the interview wave prior to death, caregivers
(ns36) reported that patients experienced a mean of six
symptoms (SD = 2.90) (see Table 2). Caregiver recognition
of the patient's symptom experience was not statistically
significant (F=.01, p=0.915) in predicting caregiver
perceived preparedness. Caregivers (ns36) reported
assisting in managing a mean of 2.27 patients' symptoms (SD?
2.34) (see Table 2). Global perceived preparedness to care
was reported at a mean of 3.07 (SD:.49) by the 32 caregivers
who responded in the SAB portion of the data collection.
Caregiver assistance in managing patient's symptoms was not

statistically significant (F=0.56, p=0.460) in predicting

43

 

 

Table 2

(10' 1:: o. ;.. : : o .o‘e‘.0‘. . .0 ‘; i... 9‘ no.

MW:

Independent Variable Impact on Preparedness
n M an F a

Symptom Recognition 36 6.00 2.90 0.01 0.92

Symptom Assistance 36 2.27 2.34 0.56 0.46

Proportion Assistance 0.44 0.27 0.40 0.54

 

caregiver perceived preparedness to care. The proportion of
symptoms experienced by the patient that the caregiver was
involved in managing ranged from .09-l.0 (M=.44, EDS-27) at
the interview wave prior to death (see Table 2). The
proportion of symptoms experienced by the patient that the
caregiver was involved in managing was not statistically
significant (F=.397, p:0.535) in predicting caregiver
perceived preparedness to care.

Thus, the number of symptoms that the caregiver
reported that the patient experienced, the number of
symptoms that the caregiver was involved in managing, and
the proportion of the symptoms experienced by the patient
that the caregiver was involved in managing were not found
to be predictive of levels of perceived preparedness to care
in caregivers for elderly, terminally ill cancer patients
within this subsample.

2. How does the caregiver's gender and living arrangements

further impact the caregiver's perceived preparedness?

44

Female caregivers (n=30) reported mean preparedness
scores of 2.9 (59:0.7), and male caregivers (n24) reported
mean preparedness scores of 2.7 (5Dg0.5). Caregiver gender
was not statistically significant (F=.01, p=0.967) in
predicting caregiver perceived preparedness to care (see
Table 3).

Caregivers who reside with the patient (ns31) reported
mean preparedness scores of 2.9 (SDFO.6). Caregivers who
resided in domiciles other than that of the patient reported
mean preparedness scores of 2.3 (59:0.3). Caregiver living
arrangements was not statistically significant (F=.33,
p30.572) in predicting caregiver perceived preparedness to
care (see Table 3).

Thus, in response to the second research question, how
does caregiver gender and living arrangements further impact
the caregiver's perceived preparedness, it was found that
neither caregiver gender nor living status were found to be
predictive of caregiver perceived preparedness to care for
elderly, terminally ill cancer patients within this sub-
sample.

Within the Caregiver Symptom Involvement questions,
from the interview, there were five cases in which responses
were missing from the interview. Because of this, these
five cases were not included in the data analysis, and they
were excluded from the linear regression equation.

Likewise, within the Caregiver Preparedness questions, from

the SAB, there were seven cases that either did not respond

45
to these questions, or did not return their SAB. Because of
this, these seven cases were not included in the data
analysis, and they were excluded from the linear regression
equation.
W

The lack of statistical significance of the impact that
the independent variables had on the dependent variable .
brought about further querying of the data. Of interest,
was the unmet need that was apparent in the patients. For
the purposes of this research, unmet need is being defined
as any caregiver identified symptom experienced by the
patient that the caregiver does not involve him/her self in
managing. Although 30 caregivers (n=36) reported that their
patients were experiencing fatigue at the wave prior to
death, only seven of those 30 caregivers were involved in
assisting their patient in managing the fatigue (see Table
4). In examining the top six caregiver recognized patient
symptoms and top six symptoms in which caregivers were
involved in managing, the unmet need that terminally ill,
elderly cancer patients were experiencing within this sample
was quite large (see Tables 4 and 5).

Despite the relatively high perceived preparedness
scores that this sub-sample of caregivers (n=34) reported,
specific to symptom management care tasks (see Table 6),-
there remained a considerable amount of unmet needs within
their patients. Sixty-seven percent (ns23) of the

caregivers reported “feeling pretty well prepared” or “very

46

Table 3.
WWW
DexiatienJLErenarednesLanthLWerceixed
Preparedness

 

 

 

 

 

Variable Perceived Preparedness Impact
:1 % M 512 F n
Caregiver Gender .01 0.97
Female 30 88 2.9 0.7
Male 4 12 2.7 0.5
Living Status .33 0.57
Together 31 91 2.9 0.6
Apart 3 9 2.3 0.3
Table 4.
so :, ; '0 - {‘00 ‘0 .go ;--‘ '0 pure on .. '. -. :
W
Caregiver Reported Caregiver Assisted
n % n %
Fatigue 30 83 Pain 12 57
Pain 21 58 Poor Appetite 11 69
Cough 20 56 Nausea 9 56
Dyspnea 17 47 Fatigue 7 23
Nausea 16 44 Constipation 6 60
Poor Appetite 16 44 Dry Mouth 5 38

 

47

 

 

 

 

 

Table 5.

so ; , - ‘0 ; :‘oo ‘o [no on: 1.0 .u‘ (’1. . .‘
W
Symptom Reported (ns36) Unmet Need (ns36)

n % .n %

Fatigue 30 83 Fatigue 23 77
Pain 21 58 Pain 9 43
Cough 20 56 Cough 17 85
Dyspnea 17 47 Dyspnea 14 82
Nausea 16 44 Nausea 7 44
Poor Appetite 16 44 Poor Appetite 5 '31
Table 6.
WW
WW1
Level of Preparedness " f %
Not at all prepared 3 8.8
Not too well prepared 8 23.5
Pretty well prepared 19 55.9
Very well prepared 4 11.8

 

well preparedf‘bo assist their patients in managing
symptoms. It may be possible that perceived preparedness is
not the issue for this sample, rather recognition of need to
assist, or perhaps having the knowledge base to know when
and how to assist, may be the issues. If these caregivers
do not attribute symptom management to the domain of

caregiver role asks, then the great amounts of unmet need

48
seen within this sub-sample of patients may not cause these
caregivers to feel less prepared to provide care to their
patient. These caregivers may believe that symptom
management lies within the domain of the formal health care
system.

Another plausible explanation for these results is that
caregivers may not believe that there is anything that can
be done to alleviate the symptoms experienced by their
patients, especially in light of the terminal phase of the
cancer disease. Or, it may be possible that the symptoms
present in such a vague manner that the caregiver feels
unable to manage them. For a caregiver with this mind set,
perceived preparedness will not be impacted, because if
he/she believes that nothing can be done to alleviate a
symptom, then he/she may not feel that his/her lack of
attending to this need necessarily deems him/her less
prepared to care.

In examining the unmet need, patient diagnosis site,
and caregiver characteristics another interesting finding
was discovered: Caregivers who do not live with their
patients are involved to a greater degree in managing their
patients' symptoms than caregivers who reside within the
same domicile as their patients, thus these patients have
less unmet need than patients whose caregiver resides with
them (see Table 7). Some of the possible explanations for
this difference in symptom involvement include: Caregivers

who live apart from their patients assist with more symptom

49

Table 7.

. .
Careaixer_Demeeranh1e_Charaeteristies_and_the_Mean_and
fIaDd?Ig_EeI1fIlQn_QiiCgIfglIfzfiBen?zfifidi£¥mntnmfi_nnd

 

 

Caregiver Reported Assisted with Patient
Characteristics Symptoms Symptoms Unmet Needs
11 1! SD in SD M SD

Spouse

Female 24 6.0 3.5 2.1 2.6 4.0 2.9

Male 4 6.5 3.5 2.3 2.9 4.3 1.9
Non-Spouse

Female 8 8.3 3.7 4.3 2.5 4.0 4.0

Male 1 3.0 0.0 3.0
Living Status

Together 32 6.5 3.7 2.0 2 5 4.5 3.2

Apart 7 6.7 2.9 4.4 2 5 2.3 1.6
Patient Cancer Site

Breast, Colon,

or Prostate 10 5.3 3.5 2.3 2.7 3.0 2.4

Lung 29 7.0 3.5 2.5 2.7 4.4 3.2

 

management tasks because they attribute symptom management
to the domain of the caregiver role; Caregivers who live
apart from their patients are goal directed in their
caregiving activities due to other role obligations, such as
family, social, civic, and/or employment obligations; Care
provided by caregivers who live apart from their patients
may seem more like deliberate care, whereas care provided by
caregivers who live with their patients may seem more
natural, as an extension of their relationship and usual
function. Patients in this sub-sample, who were diagnosed

with lung cancer, on average, experienced more symptoms and

50
had greater amounts of unmet need than patients who were
diagnosed with breast, colon, or prostate cancer (see Table
7).

Female spousal and male spousal caregivers provided
nearly the same amounts of symptom assistance as female non-
spousal caregivers, and the one male non-spousal case in
this sub-sample did not involve himself in symptom
management (see Table 7).

Discussion
Sample

In this descriptive study, 41 caregivers for elderly,
terminally ill cancer patients were queried to determine the
level of their symptom recognition and involvement in
managing their patient's symptoms. These results were
utilized to examine how the level of the caregivers' symptom
recognition and involvement in managing their patients'
symptoms impacted the caregivers' perceived preparedness to
care. Then further inquiry was conducted to investigate
whether caregiver gender or living arrangements further
impacted the caregivers' perceived preparedness to care.

Four (11.4%) of the caregivers in this sub-sample were
40 to 49 years old, five (14.3%) of the caregivers were 50-
59 years old, fifteen (42.9%) of the caregivers were 60-69
years old, and eleven (31.4%) of the caregivers were 70
years old or older. Thirty-five (85.4%) of the caregivers
in this sub-sample were female, and six (14.6%) were male.

Thirty-four (82.9%) of the caregivers lived with their

51
patient and 7 (17.1%) of the caregivers resided in separate
domiciles.

The sample findings in this study show some consistency
with other studies. Rusniak and Murphy (1995) reported that
83% of the caregivers in their study were women; Archbold,
Stewart, Greenlick, and Harvath (1990) reported that 62% of
the caregivers in their study were women; and Caserta, Lund,
and Wright (1996) reported that 82% of the caregivers in
their study were women. Over 74% of this study's sample of
caregivers were 60 years old or older, Rusniak and Murphy
(1995) had a sample (n=30) that was comprised of caregivers
whose age ranged from 65 years to 84 years old.
Wen

Caregivers reported a mean of six symptoms experienced
by their patients. Fatigue, pain, cough, dyspnea, nausea,
and poor appetite were the top six symptoms that caregivers
recognized within their patients and reported during the
telephone interview prior to death. The next six symptoms
(in descending order) that caregivers recognized within
their patients and reported during the telephone interview
prior to death were trouble sleeping, dry mouth, frequent
urination, weight loss, diarrhea, and constipation.

These findings show some consistency with those of
Kurtz, Kurtz, Given, and Given (1996), whose caregiver
sample identified fatigue, insomnia, loss of appetite, pain,
and nausea as the top five symptoms experienced by their

patients, and Pickett, Cooley, Patterson, and McCorkle

S2
(1996), whose sample of cancer patients experienced
incontinence, cough, pain, nausea, changes in breathing,
changes in appearance, fatigue, changes in appetite,
inability to sleep, and bowel changes.

The findings related to caregiver reports of pain
(ns21, 58%) come close to the findings of Ferrell et al.
(1993) who found that two-thirds of all patients with
advanced cancer experience significant pain. Kurtz, Kurtz,
Given, and Given (1996) that caregivers and patients in
their study had a 71% concordance rate for symptom
reporting, so it is plausible that caregivers in this sub-
sample may be under-reporting pain in their patients.

Terminally ill, elderly cancer patients are
experiencing many untoward effects brought on by the illness
and the treatment modalities, and their caregivers are
recognizing and reporting the manifestation of these
symptoms. The caregiver symptom reports from this secondary
analysis are consistent with patient self-reports from other
studies. Many of the symptoms that caregivers reported are
those that are easily recognized, such as poor appetite,
cough, dyspnea, pain, frequent urination, and bowel changes.
For a caregiver who does not reside with his/her patient,
knowing that the patient experienced difficulty sleeping
would require an inquiry by the caregiver. There was no
significant difference between caregiver symptom reports

when looking at living status, so it is possible that

53
careigvers who do not live with their patients inquire about
symptom experiences.
Went

The caregivers (ns36) in this study reported their
level of symptom assistance at a mean of 2.28 ($932.34)
symptoms. Symptom assistance was provided for nausea, pain,
fatigue, dyspnea, diarrhea, coordination problems, vomiting,
poor appetite, weight loss, fever, cough, dry mouth,
constipation, frequent urination, arm swelling, and leg
swelling. Of interest, caregivers were more frequently
involved in managing vomiting, poor appetite, constipation,
pain, nausea, and fever at the period between 12 and 24
weeks following entrance into the study. These findings
show some consistency with other published research.

Ferrell et al. (1993) reported that caregivers for
terminally ill cancer patients were involved in managing
pain, while Given and Given (1994) discussed the management
strategies utilized by the caregivers in their study to
alleviate the pain in their patients.

Stetz (1987) reported that 69% of the caregivers under
study reported they were involved managing the imposed
changes within their patients, such as physical and
emotional state alterations. Given and Given (1994) found
that caregivers were managing nausea, loss of appetite, and
fatigue for their patients, although no percentages/levels

of involvement were reported.

54

Although caregivers in this secondary analysis were
involved to some degree in symptom management, the level of
unmet needs that was discovered demonstrates that many
elderly terminally ill cancer patients may be experiencing
great amounts of symptom distress without much involvement
in assisting with alleviation from their caregivers.
Caregivers may not recognize their role in symptom
assistance, or may recognize that a need for symptom
management assistance exists, but have a lack of knowledge
regarding appropriate symptom management strategies.
W

The caregivers in this study (nF24) overwhelmingly
(67.7%) reported that they felt pretty well or very well
prepared to provide symptom management assistance to their
patients. Approximately one-third (n=11, 32.3%) of the
caregivers reported that they felt not at all or not too
well to provide symptom management assistance to their
patients. This result was interesting in light of the
amount of unmet need with respect to symptom management
assistance that was noted in the elderly, terminally ill
cancer patients. Global preparedness to care in this study
had a mean level of 3.07 (SD:0.49). The concept,
preparedness to care, has had little empirical investigation
that has been published. Rusniak and Murphy (1995) reported
that the caregivers in their sample (n=30) reported a
moderate level of perceived preparedness to care, which is

consistent with the findings from this study.

55

In looking at the symptom recognition and symptom
involvement results concurrently with the caregivers'
perceived level of preparedness, it is apparent that one-
third of the caregivers in this sub-sample report that they
are not too well or not at all prepared to provide care.
These caregivers need assistance in, and time devoted to,
gaining the requisite skills to ensure that their patients
are receiving the right types and amounts of caregiver
symptom management assistance.

Of interest is the other two-thirds of this sub-sample
who perceive themselves to be pretty well or very well
prepared to care, despite the levels of unmet need that were
discovered. In examining the item that was specific to
symptom management, the questions mentioned nausea and
vomiting as the symptoms. Every patient whose caregiver
reported vomiting at the last interview prior to death was
assisted by his/her caregiver; 56% (n=9) of the patients
whose caregivers reported nausea at the last interview prior
to death were assisted by their caregivers. Perhaps this
group of caregivers is unaware of the knowledge and skills
that they do not possess, or define preparedness from a
commitment or moral/ethical perspective, resulting in
elevated levels of perceived preparedness to care. It is
also possible that the preparedness tool that was utilized
in the original study did not tap into the symptom
management dimension with the level of specificity that was

needed. Another point is that the response categories were

56

not sensitive enough. Rather than providing a four-point
Likert scale, as is the case with the response categories,
perhaps providing respondents with a 10-point scale that
ranges from not at all prepared to care, to fully prepared
to care would aid in gaining a more accurate picture of the
level of preparedness that caregivers perceive they have.

Female caregivers demonstrated slightly higher
variability in their perceived preparedness scores (Mh2.9,
SD-O.7) than males (M=2.7, SD=0.5), and caregivers who
resided with their patients demonstrated higher variability
(MP 2.9, SD=0.6) than caregivers who lived apart from their
patients (M? 2.3, SD30.3). When applying Chebyshev's
Theorem to the results from this secondary analysis, 88.89%
of all female caregivers have perceived preparedness levels
that fall between 0.8 and 5.0 (the lowest rating possible is
1 and the highest rating possible is 4); 88.89% of all male
caregivers have perceived preparedness levels that fall
between 1.2 and 4.2; 88.89% of all caregivers residing with
their patients have perceive preparedness levels that fall
between 1.1 and 4.7; and 88.89% of all caregivers residing
apart from their patients have perceived preparedness levels
between 1.4 and 3.2. It is clear from this application of
Chebyshev's Theorem that caregivers who live apart from
their patients report less variability in their levels of
perceived preparedness than the other examined sub-sets

within this secondary analysis.

57

Caregixerjender

Female caregivers dominated this subsample (n; 35,
85.4%), which is consistent with the findings of Rusniak and
Murphy (1995), whose caregiver sample was 83% female;
Archbold, Stewart, Greenlick, and Harvath (1990), whose
caregiver sample was 62% female; and Allen (1994), whose
caregiver sample was 53% female. This study demonstrated
that female spousal and male spousal caregivers provided
about the same amount of assistance with symptoms, whereas
female non-spousal caregivers provided slightly more
assistance, and the one male non-spousal caregiver in this
study was not involved in managing symptoms.
2 . I' . E I

As was found in the literature, caregivers tended to
live with their patients (ns34, 82.9%). Although the
literature reviewed dealt specifically with the issue of co-
residence and use of formal services, this study did not
query for formal service use. Tennstedt et al. (1990) and
Tennstedt et al. (1993) found that co-residing caregivers
provided more of the informal care. This study found just
the opposite to be true: Caregivers who did not reside with
the patients were more involved in symptom management than
caregivers who did reside with their patients.
I ; ;:'.. . .- :- ' . .- .. -. . ...-_.

The results of this study, although not statistically
significant, do provide a beginning support for the

conceptual model, an adaptation of the Social Cognitive

58
Theory (Bandura, 1986). Caregiver symptom recognition and
caregiver involvement in symptom management render the
caregiver with the perception that he/she is prepared to
care. Because 68% (ns24) had a mean preparedness score of
3.2 (for the item prepared to assist in the management of
symptoms), it is possible that for this sub-sample, any
amount of symptom management assistance that the caregiver
provided brought about positive feelings regarding his/her
perceived preparedness to care.

However, based on the findings from this study, the
following alterations to the conceptual model are proposed.
First, the relationships among the three original concepts,
environmental factors, behavioral factors, and
personal/cognitive factors will remain linear, but rather
than having a uni-directional flow, with environmental
factors being the driving force, environmental factors will
now be at the center of the model, exerting direct effects
upon both behavioral factors and personal/cognitive factors.
Second, as with the original model, the behavioral factors
will exert direct effects upon the personal/cognitive
factors. Finally, recognition of the patient's
abilities/limitations must be addressed in order to fully
describe the caregiving experience. Because patients are
able to participate in greater and lesser amounts of their
care at various points in their cancer and treatment
trajectories, the design of this study did not provide for

those patients who were able to be the sole participants in

59
their symptom management. Thus, patient limitations are
being added to the conceptual model, exerting direct effects
upon the behavioral factors to account for this important
factor (see Figure 3).
WM

For research question number one, caregiver symptom
recognition, caregiver symptom involvement, and the
proportion of symptoms that were recognized by the caregiver
that the caregiver was involved in managing did not predict
levels of perceived preparedness to care for this sub-sample
of caregivers. Further, research question number two, the
caregiver's gender and living arrangements did not impact
the caregivers' perceived preparedness to care in this sub-
sample. It is likely that the sample size was not adequate
to answer these research questions.

Sixty-eight percent of the caregivers from this sub-
sample self report moderately high levels of global
perceived preparedness to care, regardless of their care
situations and levels of involvement in managing symptoms.
It may be possible that caregivers do not know what to do to
assist in symptom management, or even that anything can be
done on behalf of their patients to alleviate the untoward

effects of terminal cancer and/or its treatment modalities.

O . O O O . 0
no ; o. o ;o .g ‘o - r \ 1 .o g n; - ;

The American Cancer Society (1997) estimated that there
would be 1,382,400 new cancer diagnoses, with approximately

560,000 deaths due to some form of cancer in 1997. Lung,

6O

 

 

 

 

 

 

 

 

 

 

Patient ‘ » Environmental
Limitations Factors
Behavxor a1 . Cognitive/Personal
Factors Factors

 

 

 

 

 

Eignzg_1‘ Modification of Study Conceptual Model.

colorectal, breast, and prostate cancers was estimated to
account for 825,400 of these new cancer diagnoses and
301,290 of these cancer deaths (American Cancer Society,
1997). Given that these four cancer types were estimated to
account for 60% of all newly diagnosed cancers and 54% of
all cancer deaths in 1997, the Advanced Practice Nurse (APN)
in primary care is in a unique position to foster perceived

preparedness in the caregivers for these patients. In order

61
to be successful in this endeavor, the APN must work in
partnership with the patient-caregiver dyad. This
partnership can be negotiated, established, and nourished
through the utilization of the various APN role
characteristics, as well as advanced practice nursing
interventions.

As an assessor, the APN can utilize data gleaned from
the patient's medical record and from face-to-face
encounters to complete a comprehensive assessment, through
the continuous collection of both subjective and objective
data, regarding the status of the patient's biophysical and
psychosocial health. Over 75% of this sub-sample of
patients had a diagnosis of lung cancer. Patients with lung
cancer generally have more rapid deteriorations-of their
physical health, coupled with shorter survival times.
Caregivers for lung cancer patients must be prepared for the
physical debilitation and the complex symptom constellations
that their patients will experience.

APNs must assess communication patterns between the
patient and the caregiver. Knowing first how the patient
and caregiver communicate with one another, and secondly how
the patient communicates his/her needs to the caregiver will
cue the APN if there are breakdowns in communication or
mixed messages being sent, or if a pattern of non-
communication is the norm. The APN can then utilize
counseling techniques to enhance communication between the

patient and caregiver, this may facilitate patient-caregiver

62
concordance in symptom recognition/reporting. In this
study, unmet needs in symptom management assistance were
identified in spite of caregivers reporting high levels of
perceived preparedness to care. It is important for APNs to
query about symptom experience from the patient's and
caregiver's perspective, and then to examine the amount of
symptom management assistance that was provided. Although
this study did not delve into examining communication
patterns within the patient-caregiver dyad, nor did the
original study from which this sub-sample was extracted,
this information is pertinent in establishing a point of
reference from which the plan of care can be developed.

Once the assessment of symptom experience versus
symptom recognition and symptom management assistance is
completed, the APN should query the caregiver for previous
helping behaviors directed on behalf of the patient.

Knowing what forms of assistance rendered are acceptable to
the patient will provide the APN with the information needed
to begin brokering with the patient-caregiver dyad any
helping behaviors that are both acceptable to the caregiver
to deliver and acceptable to the patient to receive.

The patients in this study were all 65 years of age or
older, and nearly two-thirds of the caregivers were 60 years
of age or older, these caregivers reported a mean of six
symptoms for their patients. The APN must recognize that
these patient-caregiver dyads have established patterns of

living that are mutually satisfying and meet their

63
individual psychosocial needs. The APN must thoroughly
assess for and examine these life patterns and engage the
patient-caregiver dyad in an open dialogue to negotiate how
to alter this life pattern in a manner that meets the ever
changing needs of the patient, without neglecting the needs
of the caregiver. Both the original study and this study
did not query for types of symptom assistance rendered by
the caregivers. The original study did, however, query for
the amount of time (in minutes) spent within a two-week time
frame prior to the interview that the caregiver or other
devoted to providing symptom assistance.

To facilitate the caregiving role acquisition, the APN
can utilize role modeling to aid the caregiver in gaining
skills in assessment, query for comfort/discomfort level in
performing these skills, and provide unconditional positive
regard and positive feedback to the caregiver during the
skills acquisition phase. Although this study did not
identify helping behaviors performed by the caregiver on
behalf of the patient, it is important to know what
techniques the caregiver has utilized that have been either
effective or ineffective in alleviating symptom distress for
the patient. Perceived preparedness may be impacted by
performing symptom management skills that bring some measure
of relief for the patient. It is unknown whether the amount
of unmet need noted in this patient sub-sample could be
attributed to caregivers who have tried and failed to

alleviate symptom distress. Repeated failure in endeavors

64
may elicit an attitude of benign neglect with subsequent
same symptom experiences.

One-third of the caregivers in this study were not too
well or not at all prepared to care. Based on this finding,
the APN must assess the caregiver for any knowledge or
training needs related to providing terminal cancer care,
and develop a plan that is tailored to meet his/her needs.
In addition, it may be necessary for the APN to candidly
discuss with the caregiver what his/her role is in the
management of the patient's symptoms. Then as the educator,
the APN can apply learning theories and various learning
methods to teach and assist the caregiver in meeting his/her
tasks of care educational needs. Part of this education
should include the signs that a patient is experiencing
deleterious effects from his/her cancer illness and/or
treatment modality(ies), and what symptoms can be safely
managed at home versus those that require the attention of a
health care professional.

Terminal cancer brings about symptom clusters that tend
to evoke potentiating effects on one another. Educating the
caregiver on ways to break the cycle of symptom clusters, or
alleviating one or two of the symptoms within any cluster,
can foster a sense of competence and mastery within the
caregiver, bringing about higher levels of perceived
preparedness. Caregivers in this study reported an average

of six symptoms that their patients experienced, thus a lot

65
of teaching would be required to prepare these caregivers to
provide minimal assistance to their patients.

One-third of all caregivers within this study were 70
years of age or older. As people age, their sensory organs
have a diminished capacity to perceive and properly register
stimuli. Printed information should be of a 12 point font
or greater, with black print on buff, non-glossy paper.
Verbal instructions should be provided face-to-face, at eye
level, and in a lower pitched voice to facilitate hearing
and comprehending the instructions. The APN should ask the
caregiver to repeat back the information that was provided
to ensure that the message was accurately received.
Telephone follow-up should be done by the APN, to assess for
efficacy of prescribed interventions and caregiver comfort
level in providing them.

Within this study, nearly one-third (n=11) of the
caregivers perceived that they were not too well or not at
all prepared to provide symptom management assistance to
their terminally ill patients. Although not queried for in
this study, it is important to understand why this number of
caregivers felt so ill prepared to provide care and to
intervene on their patients' behalf to facilitate a
caregiving experience that will provide opportunities for
positive self-concept and growth. Caregivers want to feel
that they are providing comfort and relief of symptoms to
their patients in their final days of life. It is important

that the APN assess which caregivers need assistance versus

66
those who may not, and target interventions toward fostering
perceived preparedness to care.

As a counselor, the APN must, in some cases, provide
the stabilization required to maintain a working
relationship between the patient and caregiver. The APN
must allow both members of the dyad to vent frustrations,
concerns, and fear in a supportive, safe, and confidential
atmosphere. Then, the APN must bring the dyad together to
openly discuss issues of concern and negotiate resolutions
that both patient and caregiver find acceptable. It is
through this therapeutic rapport and dialogue that
caregivers will receive the support required to continue
assuming the role and tasks of care. The caregivers may be
experiencing anticipatory grieving over the upcoming death
of their loved ones, as well as loss of intimacy in the
relationship, while being expected to manage a large number
of their patients' symptoms. The APN must be sensitive to
this grief process, encouraging caregivers to express their
feelings through talking, journal writing, art, music,
poetry, or physical activity. Referrals to clergy or a
mental health professional may also be indicated to
facilitate effective grieving for the caregiver.

The APN must assume the role of the consultant, to
provide problem-solving assistance, or information regarding
symptom recognition, symptom management assistance, or other
tasks of care to the caregiver in order to foster a sense of

perceived preparedness within the caregiver. The APN works

67
in partnership with the patient-caregiver dyad, to negotiate
a plan of care, based on the priority needs and goals
identified by the patient-caregiver-APN triad. It is
important that the APN recognizes that the ongoing, day-to-
day care needs of the patient are being met by the
caregiver. The APN as a collaborator should assist the
patient-caregiver dyad with problem-solving management and
decision-making regarding the patient's care, including
assessing for any community resource or health care system
needs to aide in providing the patient's care.

In order to ensure that the caregiver is able to
provide the requisite care tasks to the patient, an ongoing
assessment must be conducted by the APN regarding the
caregiver's skills and knowledge, perceived preparation, and
perceived confidence in his/her abilities to continue to
provide care. Another important aspect of this is to
provide the caregiver with anticipatory guidance and what
symptoms are most likely to surface at critical points in
the cancer and treatment trajectories.

The APN should assess the patient's confidence in the
caregiver's abilities to provide care. This final portion
of the assessment, the patient's sense of confidence in the
caregiver's abilities may, in all likelihood, provide the
fulcrum for this delicate balance. Despite the levels of
skill, knowledge, perceived preparedness, and confidence to
provide care that a caregiver has, the patient's perception

of the care situation and confidence in the caregiver's

68
abilities will determine how the caregiver will approach the
care tasks, including which care tasks to perform/provide
and which care tasks to defer. This study demonstrated that
there exists a large amount of unmet need for symptom
management. Thus, the APN must encourage a continuous open
dialogue between the patient and caregiver that gives the
patient permission to request assistance with symptom
management. In addition, the APN may need to teach the
patient how to ask for assistance with symptom management.
The unmet need discovered through this secondary analysis
may be due in part to caregivers not hearing the patients'
messages requesting help with symptom management, or to
patients not feeling comfortable with or knowing how to ask
their caregivers for assistance with symptom management. It
may be through this instruction that levels of concordance
of caregiver versus patient reported symptoms have the
potential to go above the 71% found by Kurtz, Kurtz, Given,
and Given (1996).

The APN must continuously evaluate the quantity and
quality of care that is provided by the caregiver, utilizing
predetermined guidelines and standards, as well as the
effectiveness of the care that is rendered by both the
caregiver and the APN.) This study identified chasms in
symptom management assistance delivery (unmet need for the
patients) that could have been rectified through an ongoing
assessment and evaluation of the home care that was being

provided by the caregivers. The APN must reinforce to the

69
caregiver that he/she is a bona fide member of the health
care team, and as such, is responsible for providing the
care tasks as outline in the negotiated and established plan
of care. The caregiver, as a member of the health care
team, is accountable to the other team members for providing
these care tasks, as well as for monitoring the patient for
the effectiveness of the care rendered, and then altering
his/her approach to care to facilitate symptom alleviation
for the patient.

By assuming these various roles, the APN is acting as a
change agent. The systematic and deliberative approach
toward working with the patient-caregiver dyad will bring
about positive changes within the caregiver‘s perceived
preparedness to care, as well as the caregiver's abilities
and approaches to providing care to the elderly, terminally
ill cancer patient. Although not every patient-caregiver
dyad seen in the primary care setting will involve
caregivers who feel not at all or not too well to provide
care, the potential to positively impact caregivers who feel
pretty well or very well prepared can be realized.

The APN in primary care is equipped with the skills and
scientific knowledge to foster perceived preparedness to
care in caregivers for elderly, terminally ill cancer
patients. Nursing is both art and science, utilizing a
holistic approach to the care of humans that encompasses
biological, psychosocial, and spiritual domains. This

multifaceted approach to human care ensures that each

70

individual's care needs are being met in a way that focuses

on and enhances each individual's strengths and assets,

while minimizing their weaknesses and liabilities.

Perceived preparedness can be approached from any one of the

human potential domains. Caregivers can perceive that they

are physically prepared; psychologically prepared; socially
prepared, through a social support network; and/or
spiritually prepared to provide terminal cancer care to an‘
elder. Although this study did not examine these dimensions
of preparedness, it is imperative that APNs recognize and
address these domains in order to enhance the caregiving
experience for the patient-caregiver dyad.

RecemendatieaneLEurtheLReseareh
As discussed previously in the literature review, a few

selected researchers have studied the concept caregiver

perceived preparedness, so this study provides an additional
view and discussion on the concept. In order to add to the
science and body of knowledge on caregiving, and perceived
preparedness to care, further inquiry and research is
suggested as follows:

1. Further research is needed to examine how a caregiver's
perceived control and perceived role tasks impact
involvement in patient care and the caregiver's
perceived preparedness to care.

It is quite possible that if caregivers do not
recognize symptom management as being in the domain of the

caregiving role, then unmet need may continue to proliferate

71

within the elderly, terminally ill cancer patient
population, as was discovered in this secondary analysis.
Likewise, if caregivers do not perceive that they can impact
their patients' symptom experiences, as one-third of the
sub-sample from this secondary analysis felt, then these
caregivers may not attempt to alleviate the deleterious
effects of the terminal cancer illness and the treatment
modality(ies) being utilized.
2. The development of a cancer care specific preparedness

or mastery tool should be completed.

Although it is not yet known if levels of symptom
management involvement predict perceived preparedness in
caregivers from the original study, the results from this
secondary analysis can serve as a pilot study and indicate
that the preparedness tool used was neither specific nor
sensitive enough to tap into the symptom management
dimension of cancer caregiving. It would behoove
researchers to query caregivers about the top 15 symptoms
that cancer patients experience, to determine how prepared
caregivers feel they are to assist in managing nausea versus
pain or fatigue. In addition to the individual symptom
questions, the response category needs to be a 10-point
scale that ranges from not at all prepared to care, to fully
prepared to care. This information could be used by health
care providers to tailor educational sessions for caregivers

who identify preparedness deficits.

72

3. Further research is needed that examines the
relationship between caregiver perceived preparedness
to care and depression within the caregiver.

As the trend toward home-based health care continues to
expand, more and more family members will be thrust into the
role of caregiver. This transition often-time occurs with
little to no formal training or education of the caregiver,
as well as little fore warning about the impending role
acquisition. Caregivers are being asked to assume complex
medical and nursing care tasks, symptom management, ADL
management, and IADL management, in addition to their
current family, employment, and social obligations. This
caregiver role is a 24 hours a day, 7 days a week
responsibility. It is important for the health care system
to know how perceived preparedness to care and depression
are related, if at all. Depressed caregivers may be unable
to provide the requisite care to the patient and may in
fact, cause more harm due to errors in medication
administration or errors of omission.

4. Further research needs to be conducted to examine the
antecedents to caregiver involvement and reasons why
others do not become involved in patient care.

Because health care is being provided in the home
setting, it will be imperative that the formal system of
care be aware of demographic or psychosocial characteristics
that may impact the acquisition of the caregiver role.

Likewise, if the reasons for non-involvement in patient care

73

are brought to the forefront, interventions can be initiated

to possibly remedy this type of situation. When there is a

greater number of secondary caregivers involved in the

patient's care, the likelihood that the primary caregiver is
able to be engaged in social and leisure activities
increases, thus increasing likelihood that the primary
caregiver will be able to continue with his/her caregiving
role. Concurrent querying should be conducted to examine
what interferes with the caregivers' recognition of symptom
management needs.

5. Further research should be conducted that examines
patterns of caregiver helping behaviors and how
patients and caregivers broker: 1) the caregiving role,
2) accepted helping behaviors, and 3) which symptoms
caregivers are willing to assist in managing and which
symptoms caregivers are not willing to assist in
managing.

This information can be utilized in caregiver
educational groups. Knowing the average care needs for an
elderly lung or breast cancer patient may help to alleviate
fear of role overload for new caregivers. Knowing how other
patient-caregiver dyads have negotiated what helping
behaviors will be provided by the caregiver and what helping
behaviors are acceptable to the patient and caregiver may
facilitate a similar open dialogue between other patient-

caregiver dyads, fostering an esprit de corps, or at the

74

very least, beginning the journey of the care trajectory

from the same reference point.

6. Further research needs to be conducted, utilizing a
qualitative research design, that examines caregiver
workload, caregiver perceived preparedness to provide
the requisite care tasks over time, caregiver perceived
health care system needs, and caregiver perceived
education/training needs.

This information can be utilized to broaden the
knowledge base regarding the caregiving experience.

Although a vast amount of information exists on caregiving

in general, much it is collected using instruments that have

response categories with four to five options for selection.

Not all caregiving experiencing can be cataloged within the

same defined confines. Open ended questions that do not

have predetermined response categories, afford the caregiver
with the latitude to discuss his/her unique care situation,
perceived abilities/preparedness to care, and needs in order
to continue the caregiving role. Exposing the caregiver to
this means of data collection may engender feelings of
contribution or importance within the caregiver, with
respect to the research process, or feelings that there is
genuine interest in learning about the caregiver's unique
situation and perspective of the caregiving role. If health

care providers know how prepared, or ill prepared, a

caregiver feels to provide care, then interventions to

enhance preparedness can be initiated. This open dialogue

 

75

from the caregivers will expand and enrich the current level

of knowledge, provide information to the health care system

so that it can intervene on the caregiver's behalf, and
perhaps create new avenues for scientific inquiry.

7. A replication of this study needs to be conducted with
a larger sample that tracks preparedness across time in
order to determine if a larger sample will produce
similar, or different results.

It is important that all research endeavors are
initiated with the goal of replication, whether it be
performed by the same researcher or someone else. The
validity of a study's findings are enhanced when results can
be replicated in subsequent inquiries. Likewise, if
alternative results are obtained from a replication, then it
is important to investigate for extraneous variables that
may be impacting the outcome measures, and if found, attempt
to control for these extraneous variables in the data
analysis. The pursuit of empirically valid findings must be
the goal of all researchers.

Summary

This study examined caregiver symptom recognition in,
and levels of caregiver symptom management assistance
provided to elderly, terminally ill cancer patients at the
interview wave prior to death, to determine if these
impacted caregiver perceived preparedness to care. This
study further sought to determine if caregiver gender or

living arrangements further impacted caregiver perceived

76
preparedness to care. The findings from this secondary
analysis suggest that none of the independent variables
impacted caregiver perceived preparedness to care at a
statistically significant level.

The majority of caregivers perceive themselves to be
pretty well prepared to care in this sub-sample. Caregivers
are recognizing an average of six symptoms in their
patients, yet providing assistance for an average of only
two, leaving four deleterious effects from the terminal
cancer illness, or treatment modality(ies) unaided in their
elderly, terminally ill, cancer patients. Despite the
findings that were not statistically significant, one-third
of the sub-sample of caregivers in this study reported that
they were not too well or not at all prepared to provide
care. This finding suggests that perhaps there are other
extraneous variables not examined in this secondary analysis
that drive perceived preparedness levels. Co-morbidity
within the patient sample was not examined, nor was
caregiver physical or mental health status examined.

An interesting finding from this secondary analysis was
that although caregivers were recognizing about the same
number of symptoms within their patients, the caregivers who
did not live with their patients provided more symptom
management assistance than did those caregivers who resided
in the same domicile as their patient. Although previous
discussion surrounded issues regarding goal directed care

related to competing role demands experienced by that sub-

77
set of caregivers, another plausible explanation is that
caregivers who live with elderly, terminally ill cancer
patients may become desensitized to their patients' symptom
experiences. If this is the case, then it seems to be a
logical finding that those caregivers who do not reside with
their patients not only recognize the deleterious effects,
but also take action to alleviate them.

The continued movement of health care provision to the
home setting is an effort on the part of insurance companies
to attempt to corral the out of control costs of inpatient
health care. As Medicare continues to try to control_costs
and maintain a solvent system of health care by cutting
allowable services, such as home health care nurses, the
responsibility of providing terminal cancer care to elders
will continue to shift to family members of the patient.

The challenge that faces the formal system of care lies in
making this transition of care provision a seemingly
effortless event.

Advanced practice nurses are in the unique position to
demonstrate their mettle, and worth, vis a vis other health
care providers, in ensuring that this transition of care is
completed without compromising the well being of either
member of patient-caregiver dyad. Nursing is the art and
science of providing holistic care to systems, whether these
systems be singular, the family, a community, or society as
a whole. Nurses in advanced practice have the advanced

training, skills, and knowledge to provide comprehensive

78
care based on ongoing assessment, diagnostics, care
planning, advanced interventions, and evaluation for the
quality, completeness, and appropriateness of the care
provided. A key component in this scheme is the caregiver,
who provides the APN with his/her subjective appraisal of
the patient's status between visits. Assuring that
caregivers are prepared biophysically, psychologically, {
socially, and spiritually to provide the requisite care
tasks, is paramount to the delivery of quality care to the
elderly, terminally ill, cancer patient in the home setting.
APNs are called upon to utilize this opportunity to improve
the home cancer care experience for all patient-caregiver

dyads through their quintessential caring skills.

LIST OF REFERENCES

LIST OF REFERENCES

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Archbold, P. G., Stewart, B. J., Greenlick, M. R., 8
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Lynn, J., Teno, J. M., Phillips, R. 8., Wu, A. W.,
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Schulz, R., Visintainer, P., 8 Williamson, G. M.
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82

Stetz, K. (1987). Caregiving demands during advanced
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Stommel, M., Given, C. W., 8 Given, B. (1990).
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Tennstedt, S. L., Crawford, S., 8 McKinlay, J. B.
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We) . 874-883.

Tennstedt, S. L., Sullivan, L. M., McKinley, J. B., 8
D'Agostino, R. B. (1990). How important is functional
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WM) . 439-461.

APPENDIX A

83

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APPENDIX B

85

NWRINCIWMICGSAB
PAGE"

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

Overall. how well prepared do you feel you are
Would you say (circle one response for each)

1 '8 NOT AT ALL PREPARED

 

 

2 - NOT TOO WELL PREPARED
3 PRETI'Y WELL PREPARED
4 a VERY WELL PREPARED
How well prepared do you feel you are (circle one response for each)
NOT NOT PRETTY VERY
AT ALL Too WELL WELL WELL
PREPARED PREPARED PREPARED PREPARED
1. to care for '5 physical needs
(e.g. dressing. toileting, bathing. etc)? 1 2 3 4
2. to take care of 's emotional needs? 1 2 3 4
3. to find out about and set up tonnal
services tor ‘s are? 1 2 3 4_
4. to care for 's medtceUnursing

treatments (e.g.. giving medicines.
changing dressings, skin care.
exercises. etc)? 1 2 3 4

5. to manage finances. bills, and insurance
forms related to 's care needs? 1 2 3 4

 

6. to. plan for activities such as test.
meals. recreation. or things for

 

to do? 1 2 3 4
7. to manage . 's behavior problems. such
as moodiness, initabflity, and contusion? 1 2 3 4
8. to manage equipment and techniques
necessary to are tor__? 1 2 3 4
9. . ‘ to help in management of symptoms such as
nausea or vomiting? 1 2 3 4
10. to discuss with doctors the problems
‘3 MW? ' 1 2 3 4
1 1 . to help get to cancer treatments? 1 2 3 4

12- to find the intormation that you need
about oattoefl 1 2 3 4

13- Overall. how well prepared do you think
youarefortheroleotcaregiving? 1 2 3 4

APPENDIX C

86

MSU FAMILY HOME CARE CANCER STUDY

W CONSENT FOR RESEARCH

Introduction

Youarebcingaskcdtoparticipatcinarcscsrchpmjecttostudythccostsassociatcdwithcanccrandthc
effects of cancer on the lives of patients and their families or caregivers. The purpose of this research
study is to determine how age. preexisting health conditions, the site and extent of the cancer. and the
type of treatment affects the patient's mental status and ability to perform usual daily activities. In
addition. information concerning the involvement of and effect on patient's families or caregivers will
be collccwd.

This study is being conducted by Drs. Barbara and Charles Given who are professors in the College of
Nursing and the Department of Family Practice at Michigan State University. This research study is
being sponsored by Michigan State University and also involves other hospitals or medical center. This
study will involve 1,235 patients 65 years of age and older who have breast. colon. lung or prostate
cancer.

Description of Procedures

Should you decide to participate you will be contacted by telephone four times over the next 12 months;
at approximately 4, 12. 24 and 52 weeks following your friend or family member's diagnosis. The
trained interviewer who will call you will ask a number of questions about your health, how you are
feeling. the types of activities you help your friend or family member perform, and the amount of time
and money you spend in caring for this person. It will take about 45-60 minutes to complete each
interview. In addition, a written questionmirc will be sent to you with a stamped tctum envelope. This
questionnaire will ask questions regarding the assistance you provide to your friend or relative and will
take about 15 minutes to complete.

Risks and Discomforts

It is not expected that you or your friend or family member will be placed at any physical. financial or
legal risk as a result of participation in this study. Regardless of whether or not you choose to participate
in this study. you and your friend or family member will continue to receive medical care under the
direction of his/her personal physician(s). All information collected for this study including that obtained
from your friend or family member will be kept strictly confidential.

w: \CG-MSU ($77)

87

It is recognized that the diagnosis and treatment of cancer is stressful. In over 400 cancer patients. the
investigators have found no patient to date who experienced additional stress as a result of responding to
similar interview questions or written questionnaires. All interviewers for this study will be trained by
the investigators. and will be able to assist you if you should find any aspect of this study upsetting. In
addition. you are free to withdraw from this study at any time for any reason without penalty or change
inthequalityofrnediealcarewhichyou receive. Ifyouhavcanyquestionsorwishtowithdrawfrom
thestudyyou maycalleithertheprojectcoordinatororCharles W. Given. theCo-Principal Investigator.
at the research office: (517) 353-3843 or toll free. l-800-654-8219. '

Benefits

It is not expected that you or your friend or family member will experience any direct benefit from
participation in this study. Information from this study may provide useful information concerning the
personal and financial impact of the diagnosis and treatment of four common cancers among the elderly.
Neither you nor your friend or family member will be paid or receive any other form of compensation

for participating in this study.
Alternatives

If you decide not to participate in this study your friend or family member will continue to receive all
medical care and other standard fomis of support. Neither you nor your friend or family member will
be contacted for telephone interviews or asked to complete questionnaires.

Rights and Responsibilities

To take part in this study. you must choose to do so and sign this form on the line below. Only
volunteers will be used in this study. If you choose to be in the study now. you may withdraw later on
by calling Dr. Charles W. Given at (517) 353-3843 or toll free. 1-800-654-8219. If you choose not to
take part in this study. or if you withdraw after you have started. you will not be penalized in any way.

A record of your progress while on the study will be kept ina confidential file at College of Nursing at
Michigan State University. Only a few people who work on the study will have access to records that
could directly or indirectly identify you. lnforrnation about your participation in this study will be
combined with that of all other patients who participate in the Study and may be shared with others in the
research field. but no names will be used. There will be no names or other patient identification used in
any study reports published later on.

up: \CG-MSU (3’97)

88

In the unlikely event of any injury from the research. no reimbursement. compensation or free medical
treatment is offered by Michigan State University.

Should you have any questions about your rights as a subject or should you sustain any injury related to
the research. you may contact Dr. David Wright. Chair. University Committee on Research Involving
Human Subjects. at (517) 355-2180.
[havehadanopportunitytbaskquestionsaboutthesmdyandwasgivensufficienttimetoconsidermy
participation. I have received a copy of this form and agree to. participate.

Caregiver's Signature Date

Please print:

name

 

address

 

 

phone L 1

Name of patient

 

Investigator's Signature Date

Witness' Signature Date

UCRIHS APPROVAL FOR
THIS project EXPIRES:

MAY ' 8 1998

SUBMIT RENEWALAPPUCATION
ONE MC-N‘l'rl PRDOR TO
ABOVE OATETOCONIINUE

”NCO-“SUM

APPENDIX D

 

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- at (517)355-2180 or tax (Si1ls

89

MICHIGAN STATE
u N l v E R s r r v

May 12. 1997 ‘

 

TO: Barbara A. Given
A230 Life Sciences

R8: IRBI: 92-200
rm: — SSSEEY HOME CARE M m--A MIN-BAS-
RBVISIN Rm: N/A
CA : l-C. 2-H
APPROVAL DATE: 05/08/97

The university Conaittee on Research Involving Human Sub ects'fUCRIlSl
review of this roject is complete. I am pleased to ad. e that the
rights and wel are of the human subjects appear to be adequately
rotected and methods to obtain informed consent are appropriate.
gherefore. the UCRIHS approved this project and any re sions listed
ve.

Ilfllflhh: UCRIES a roval is valid for one calendar r. with
the apprggal date.shown above. Investigatzg: plgggiggigg
continue a project beyond one year must use the green
tors (enclosed with t e original roval letter or when a
project is renewed) to seek u at certification. There is a
maximum of four such expedite renewals possible. Investigators
wishing to continue a progect beyond that time need to subrni t

‘ again or complete revxew.

REVISIONS: UCRIBS must review any changes in rocedures involving human
subjects. rior to initiation of change. If this is done at
the tine o renewal. please use the een renewal form. re
revise an approved protocol at an o r tine during the year
send written request to the Chair. requesting revised
approval and referencing the project's Inn 8 and title. Include
in request a description of the and any revised

ts. consent forms or advertisements that are applicable.

PROBE]
CRAIOBS: Should either of the followin arise during the course of the
work. investigators must noti y UCRIBS Eronptly:‘ l) roblens
(unexpected side effects. comp aints, e c.) invol
ects or (2) changes in the research environment or new
intormation indicating greater risk to the human sub ects than
existed when the protocol was previously reviewed approved.

t any future h°1§i leise do not hesitate to contact us

   
 

vid 3. wright 0'.
counts crun-

shed

cox/yhirles Given

APPENDIX E

 

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90

MICHIGAN STATE

UNIV

October 16.

ERSITY

1991

To: Barbara A. Given

A230 Life Sciences
R3: 183.: 97- ‘78

TITLE: THE INPACT’OP CARIDIVBR SYMPTOM INVDDVBNINT ON
LEVELS OF PERCBIVED PREPARSDNESSW DEPRESSION
IN CAREGIVIIS PO! ILDBRDT. TERMINALLY MCANCIR
PATIENTS

REVISION REQUESTED: N/A

CATEGORY: l-B -

APPROVAL oars : 10/14/97

The university committee on Research Involving lumen Sub ects'(0ClIES)
review of this projecttg:hull complete. I amrpleased to adv se that the

rights and welfare of

appear tom adequately

 

Wu; .
gggtected and methods to obtain informed consent are appropriatz;

refore.

REVISIONS:

PROBLEMS]
CHANGES:

If” mbe
at (517)355- 2180 or FAX ($11ld

, cy/

Sincerely.

cc : Sharon

the UCRIHS approves this project and any reVisions l

OCRIHS approval is validm for one calendar year beginning with
the approval date m. mvestigators planningm
continue a project tzzndm mr must use the green renewal
form (enclosed with riginala roval letter or when a

project is renewed) to seekt certification. There is a
maximum of four suchm mewals mgossible. Investigators
wishi to continue a projectw tine need to submit it

again or complete review.

UCRIHS must review any changu in rocedures involving human
subjects, °prior to initiation of the change. If this is done at
the ti me renewal. please use the een renewal form. To
revise an approved protocol at an o r time duringm

send your written request to the ”CRIBS Chair, requestingIncl revised
approval and referenc the project's IRE t and title. -

in ur request a descriptionp of the change and any revised
ins ruments. consent forms or advertisements that are applicable.

Should either of the toll arise duringt course of the
work. investigatorsf Inst notieym promptly:1v(ll Broblems
(unexpected side efm aints, etc. I

subjects or (2) changes Min uearch environment or new

»information indicating greater risk to the human sub ects than

existed when the protocol was previously reviewed approved.

of any future help5 lags. do not hesitate to contact us

L. Korachik