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thesis entitled

INFORMATION NEEDS, PARTICIPATION PREFERENCES AND
SATISFACTION WITH HEALTH CARE RELATIONSHIPS IN
CANCER PATIENTS: HOW THEY CHANGE OVER TIME

presented by

Dana Berry-Richardson

has been accepted towards fulfillment
of the requirements for

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INFORMATION NEEDS, PARTICIPATION PREFERENCES AND
SATISFACTION wrrH HEALTH CARE RELATIONSHIPS IN
CANCER PATIENTS: How THEY CHANGE OVER TIME
By

Dana Berry—Richardson

A THESIS

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

MASTER OF SCIENCE
OF NURSING
College of Nursing

1993

ABSTRACT
INFORMATION NEEDS, PARTICIPATION PREFERENCES AND SATISFACTION
WITH HEALTH CARE RELATIONSHIPS IN CANCER PATIENTS: HOW THEY
CHANGE OVER TIME
By
Dana Berry-Richardson

A great deal of attention has been focused on how individuals with cancer cape with
their illness. Changing trends in care delivery, an aging population and greater successes
in treatment have brought the cancer patient more and more into the primary care field.
A lack of understanding exists, however, in how coping changes over the course of the
illness and treatment trajectory. This study utilizes secondary data analysis from a larger,
funded research grant, "Family Home Care for Cancer Patients", Dr. Barbara Given, R.N.,
Ph.D., principal investigator. The study, using a sample of 32 patients with varying
cancer diagnoses, explored how patients' caping behaviors change over time. Information
needs, satisfaction with health care relationships and preferences for participation in health
care decision were measured at initial diagnosis of new or recurrent disease, and again
at three six-month intervals. Findings suggest that time from diagnosis has an impact on
patients' needs for information, demonstrating a decreasing need for information over
time. In addition, gender and severity Of illness influence the dependent variables,
suggesting that women may wish to participate more in treatment decisions than do men,
and that decreasing severity of symptoms may negatively impact patients' satisfaction with
their health care providers. Individual needs of each patient need to be considered at each

visit across the illness continuum as they Shift in magnitude and content over time.

ACKNOWLEDGEMENTS

I wish to thank the chairperson of my thesis committee, Dr. Barbara Given, for her
unfailing humor, support and encouragement throughout the writing of this thesis. I also
wish to thank the other members of my committee, Dr. Rachel Schiffman, Dr. Mildred
Omar, and Dr. Bill Given, who provided me with their time and expertise at each step of
the research process. A special thank you to Dr. Manfred Stommel, for his assistance in
planning the data analysis for this project, and to Sping Wang, for her hours of assistance
with the multiple data runs required for this project.

My deepest and most heartfelt thanks to my husband, Bruce Richardson, for his

unending patience and confidence in me throughout the writing of this thesis.

iii

TABLE OF CONTENTS

LIST OF TABLES
LIST OF FIGURES
INTRODUCTION

STATEMENT OF THE PROBLEM
Research Questions
Study Relevance

THEORETICAL FRAMEWORK
Conceptual Definition of Study Variables
The Role of the Clinical Nurse Specialist
Critique of the Moos Framework

REVIEW OF THE LITERATURE
Cognitive Appraisal
Information Needs
Relationship Satisfaction
Participation Preferences

METHODS
The Sample
Data Collection Procedures
Operational Definition of the Variables
Instrumentation
Scoring
Data Analysis
Study Assumptions
Study Limitations
Protection of Human Subjects

FINDINGS
Analyses of Research Questions

iv

vi

vii

(It-#45

11
12

13
14
15
16
19

21
22
22
22

26

27

29

29
31

DISCUSSION
Implications for Advanced Practice Nursing
Implications for Further Research

SUMMARY

APPENDICES
Appendix A: Moos's Original Model
Appendix B: Specific Aims of the Given & Given Study (1988)
Appendix C: Consent Form
Appendix D: Demands of Illness Inventory
Appendix E: U.C.R.I.H.S.

IJST OF REFERENCES

39
46
50

52

54
55
56
57
59

LIST OF TABLES

Table 1: Sociodemographic Characteristics of the Sample 30
Table 2: Disease and Treatment Charactersitics of the Sample 31
Table 3: Mean Information Needs Over Time 32
Table 4: Repeated Measures AN OVA: The Effect of Time on Information Needs 32
Table 5: Mean Participation Needs Over Time 33
Table 6: Repeated Measures AN OVA: The Effect of Time on Participation Preferences 33
Table 7: Mean Relationship Satisfaction Over Trme 34
Table 8: Repeated Measures AN OVA: The Effect of Time on Relationship Satisfaction 34
Table 9: Mean Dependent Variable Scores by Age, Gender, Income and Education 35
Table 10: AN OVA: The Effects of Age, Gender, Income and Education on the

Dependent Variables 36
Table 11: Mean Symptom Severity at Each Wave 38

Table 12: AN OVA: The Effect of Symptom Severity on the Dependent Variables 39

vi

IJST OF FIGURES

Figure 1: Modified Conceptual Model of Adaptation to Physical Illness 9

Figure 2: Moos's Model (Revised): Significant Relationships of the Study 45

vii

Introduction

Cancer is no longer a clinical problem encountered in the acute care setting alone.
Individuals with cancer are being diagnosed and treated in an ever—increasing number of
settings, including community hospitals, clinics, physician Offices and even in the home
setting. In 1992, an estimated 520,000 peOple were expected to die from cancer,
approximately 1400 people a day. Of every 5 deaths in the US, one will be from
cancer. In addition, 1,130,000 peOple were expected to be diagnosed with cancer in 1992
(ACS, 1992). With the escalating numbers of people diagnosed and living with cancer,
it now qualifies as a chronic disease, and as such, enters the realm of primary care, with
prevention, detection and ongoing management as priority issues.

The Clinical Nurse Specialist (CNS) in primary care encounters proof of this trend
daily. Screening for cancer is an important function of primary care. Patients with
cancer are being managed in ambulatory clinics and outreach programs (Hamric, 1992).
More patients are being diagnosed and treated for cancer in tertiary care settings and then
retuming to the community primary care provider for symptom management, monitoring
and follow up. The primary care CNS must be cognizant of the unique needs of cancer
patients and their families.

Understanding how individuals experience and cape with cancer is critical for the

CNS in primary care, and Should include recognition of the entire cancer experience

across the disease trajectory. Unfortunately, until recently, there has been a lack of
research and literature that examines how individuals manage with cancer beyond the
initial diagnosis and treatment phase. The diagnosis of cancer has been recognized
as a crisis (Lewandowski & Jones, 1988; Messerli, Garamendi & Romano, 1980) for both
the client and his or her family. This period is often characterized by acute emotional
turmoil, panic, denial and depression. Generally, this period resolves as clients gather
information and begin to implement adaptive COping measures. However, as with other
chronic illnesses, the process of living with cancer is rarely smooth, and crisis periods
occur, often during periods of treatment transition and disease progression. The CNS
must deveIOp a working knowledge base of the phases of living with cancer, and
understand how the client and family's needs may change during these phases
(Lewandowski & Jones, 1988). COping is not of interest in the diagnosis phase alone.
It is instead, a vital ongoing process as the client undergoes and completes treatment, and
learns to live with the illness. Literature exists that examines the initial crisis of diagnosis
(Edlund & Sneed, 1989; Loveys & Klaich, 1991; O'Connor, Wicker, & Germino, 1990).
A gap exists, though, in the area Of long-term adjustment and coping. This is an area
especially relevant for the primary care provider who is more likely to see the client in
the later phase of the illness, during supportive care and follow-up management, than at
initial diagnosis and during active treatment. There is a growing need to understand what
the client experiences later in the disease and treatment trajectory, and how best to
facilitate coping.

Three factors emerge as critical to the process of coping with cancer. First, the

gathering of information is clearly an essential task. Without information, the client
cannot develop an understanding of the meaning or potential impact of the external event
(the cancer diagnosis). Secondly, the development of a positive relationship with the
health care team is essential. Without it, information cannot be successfully shared,
questions asked or needs identified and met. Lastly, the client must be as much a part
of the decision-making team as he or she wishes to be. Without this involvement, the
client and family become "outsiders" and it is increasingly difficult for them to deveIOp
a clear understanding and personal meaning of the cancer's impact.

The primary care CNS is in a unique position to facilitate coping of the individual
experiencing cancer. By fostering the above cOping behaviors, the CNS assists the client
to gather the essential components of cognitive appraisal, allowing each patient to
establish a personal understanding and meaning for the illness. As educator, the CNS is
able to meet information needs across the span of illness, both for the client and for the
family. As client advocate, the CNS develops relationships with the client that are based
upon trust, concern and respect. As clinician and advocate, the CNS Operates at all times
within a framework that recognizes the client as an active participant in treatment
decisions. It is critical, though, to understand how the client's needs for information and
participation change over the disease course, so that interventions may be tailored to meet
those needs more effectively. Do clients need more information in the early stages Of
disease, or do they feel less informed later, when there may be less contact with the
health care team? Does the client's desire to participate in decisions grow over time, as

self-efficacy is gained, or does the client relinquish that control as he or she gains trust

that the health care provider will make an appropriate choice?
Statement of the Problem

Three behaviors have been identified as important to the process of clients' coping
with cancer: information gathering, establishment of successful health care relationships
and participation in health care decisions. These behaviors are used repeatedly in the
cognitive appraisal process as it spans the phases of the cancer‘s course.

A gap in the literature exists to explore how these behaviors change over the course
of time. Most research attention has focused on the initial diagnostic phase of illness.
With more clients living longer, it has become imperative to examine COping over the
entire continuum of illness, and to be able to intervene at each phase of illness to enhance
individual and family coping.

The purpose of this study was to examine, by secondary analysis, how individuals'
cOping, as measured by information needs, satisfaction with relationships with health care
providers and participation preferences, changes over time, as defined by months from
diagnosis.

Research mestion

This study attempted to answer the following research questions:

1. How do clients' information needs, participation preferences and satisfaction
with health care relationships change over time?

2. DO the background demographic factors age, gender, education or income
influence information needs, participation preferences and satisfaction with

health care relationships over time?

3. Is there a confounding effect of severity of illness on information needs,
participation preferences and satisfaction with health care relationships over
time?

Study Relevance

The results of this research will provide valuable insight to primary care providers
who interact with individuals who are experiencing cancer. An individualized and
wholistic approach to patient care is a hallmark of advanced nursing practice. Patients
who have adequate information, are comfortable with their health care providers and feel
a part of treatment decisions are likely to better define and meet their own needs, utilize
resources, adhere to treatment regimens and find a satisfactory meaning for their illness
experience. By gaining a better understanding of clients' coping over the course of
illness, interventions aimed at facilitating information gathering, enhancing the health care
relationship, and empowering patients to participate in treatment decisions to the extent
they wish to will be identified. Intervention strategies may be better tailored to the phase
of illness, allowing the CNS to provide care that is individualized and timely. This study
yields information useful to the primary care and oncology fields alike.

Theoretical Framework

Moos (1977) developed a framework for examining how the individual capes with
physical illness. A multifaceted process of adaptation occurs (see Appendix A for the
’ original unmodified model) in which the patient establishes a personal meaning and
understanding of the illness event (cognitive appraisal), and is then able to identify and

utilize adaptive tasks and cOping skills, and thus positively impact the outcome. The

ability to perceive and establish a satisfactory meaning Of the illness event is influenced
by three primary areas: the patient's background and personal factors, such as age, gender,
previous experience with illness, and knowledge level; illness-related factors, such as
potential for cure, invasiveness and discomfort Of treatment and severity of illness
symptoms; and physical and social environmental factors, such as social support and
financial resources. The patient's ability to establish meaning, and then to select and
utilize adaptive tasks and coping skills will, in turn, define the outcome of the illness
crisis. The independent variable, time, is depicted as a feedback loop that will continually
influence the process of cognitive appraisal (see Figure 1). Previous crisis outcomes will
influence later ones; adaptive tasks will again be identified and previously proven
effective coping skills exercised again.

Cognitive appraisal is worthy of further discussion here, for it places the three
variables to be studied into context. Information seeking, establishment of positive
relationships with health care providers and participation in treatment decisions are
antecedents to patients' successful cognitive appraisal. Cognitive appraisal provides a
"mediating" effect between the environmental stress (the illness) and the emotional
response (Murray, 1964). It allows the individual and family to identify the stressor, look
for resources available to allow coping, and then to form a perception of the extent of
threat engendered. The process is an interactive one that requires input and understanding
between the client, family and the health care team.

Moos (1977) defines essential adaptive tasks that must be dealt with by most clients

experiencing physical illness:

1. Dealing with pain and incapacitation
2. Dealing with the health care environment and treatment procedures
3. DeveIOping adequate relationships with professional staff
4. Preserving emotional balance
5. Preserving a satisfactory self-image
6. Preserving relationships with family and friends
7. Preparing for an uncertain future
Any number of COping skills enhance the client's ability to achieve the above tasks.
Moos describes the following general areas of cOping skills commonly used:
1. Denying or minimizing the seriousness of the threat
2. Seeking relevant information
3. Requesting reassurance and emotional support
4. Learning specific illness—related procedures
5. Setting concrete, limited goals
6. Rehearsing alternative outcomes
7. Finding a general purpose or meaning
For the purpose of this study, the model has been modified (see Figure 1) to more
clearly depict the relationship between the independent variable (time) and the dependent
variables (information needs, relationship satisfaction and participation preferences in
health care decisions.) It is expected that the patient's needs will change over time, as the
focus of care Shifts from diagnosis, to treatment, to remission and survivorship or

recurrence and advanced disease. Thus a feedback IOOp was added to the model to depict

the influence of time on the patient's needs. In addition, the CNS, within the framework
of the health care system is in a position to assist the patient and family to meet those
needs, so that patients and family have the tools they need for successful appraisal. The
patient's ability to meet his or her needs over time will provide the essential ingredients
for cognitive appraisal at each phase of the illness (see Figure 1).

Conceptual Definition of the Study Variables

The first dependent variable to be considered is information needs. Cognitive
appraisal requires information. Without it, the individual is unable to define the threat
engendered by the illness, to identify options for action or to mobilize support and COping
measures. Information needs are defined as an expressed lack of adequate knowledge or
information related to the cancer illness or its treatment.

The second dependent variable, relationship satisfaction, is defined as the patient's
perception of the health care provider's degree of concern and caring for him or her as
an individual. This is a distinct phenomenon from satisfaction with the medical treatment
as a whole, a nebulous concept whose study is beyond the scape of this work. This
concept is not represented as a distinct phenomenon from relationship dissatisfaction, but
rather is thought to represent a continuum ranging from a complete lack of satisfaction
(dissatisfaction) to high levels of satisfaction.

The third dependent variable, participation preferences, is defined as the extent to
which the patient feels that he or She is an active participant in health care decisions and

the treatment plan.

Fi re 1: Modified Conce tual Model of A tation to Ph sical Illness Moos 197 .

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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HEALTH CARE TEAM

Time, the independent variable in this study, is defined as the amount of time (in
months) from the initial diagnosis of cancer, or the diagnosis of new recurrence of
disease. The dependent variables were measured at three intervals across the study: three,
nine and fifteen months post diagnosis. These intervals were chosen so as to keep each
time span between measurement equal, as well as to minimize a potential "Hawthorne"
effect by measuring with the same instrument more often. Time is expected to produce
changes in the three mediating variables influencing COping and cognitive appraisal:
information needs, relationship satisfaction and participation preferences. As a result, it
is anticipated that information needs, relationship satisfaction and participation factors will
not remain static, but will also shift as time goes on. Current research has demonstrated
that needs are high at the initial diagnostic phase of illness. There is limited information
concerning cancer patients' needs later in the illness, but there is a growing belief that late
stages in the illness are equally difficult, as patients are Often completing treatment and
may be receiving less support from family and the health care team.

While this study examines each of the dependent variables separately, there is
evidence to suggest they are interrelated; patients who wish for more information tend
to want to participate more (Cassileth et al., 1980). Patients who are satisfied with their
relationships with the health care team are more likely to be comfortable asking questions
and playing an active role in the decision-making process. Thus, the three dependent
variables are expected to follow a similar pattern across the course of the study.

Moos's model depicts background personal, illness-related and environmental

characteristics as influencing factors on the dependent variables. Age, gender, education,

10

illness and income, for example, may impact the individual's experience and coping needs.
These factors were addressed in this study. A number of these characteristies were
measured only once, as they were not likely to change significantly over the course of the
study. The following background personal factors were measured at initial entry onto the
study (at the screening interview): age, gender and education. Social and environmental
factors examined at Wave I (three months post diagnosis) included marital status and
income. The following illness-related factors were measured at three months only (Wave
I): location of initial cancer, treatment modalities, presence of recurrence and involved
sites of the cancer. Symptom experience was examined for its confounding effect across
time, therefore it was measured at all three intervals (three, nine and fifteen months post
diagnosis.)
The Role of the CNS

AS depicted within the model, the CNS, within the framework Of the health care
system, is in a unique position to help the patient and family to identify and gather the
essential tools for successful cognitive appraisal to take place, at any phase of illness.
The CNS helps the patient to define individual information needs and meet them, using
the learning style that works best for the individual. The CNS establishes a relationship
with the entire family that fosters trust and respect. Within such a safe environment, it
becomes possible for the CNS to continually evaluate the patient and family's satisfaction
and address concerns before they become problems. And, finally, early within the
relationship, the CNS assesses the patient's preference for participation in treatment

decisions, and remains supportive of such preferences over the course of the illness. The

11

patient is accepted as an active part of the health care team.

In addition, the primary care CNS maintains a long-term relationship with the patient
and family, that is not limited to one phase Of illness (eg. the acute care phase). As a
result, the CNS is able to impact repeatedly on the cognitive appraisal process, across the
illness continuum. As information, relationship satisfaction and participation preference
needs change, the CNS is uniquely suited to detect and meet new needs.

Crigue of the Moos Framework

Moos's model has a number Of strengths. It provides a simple framework for
predicting how individuals will respond to physical illness, and ackowledges the
mutifaceted process that is involved in coping with the stressors of being chronically ill.
It successfully simplifies the process of adjustment to illness to a schema that
demonstrates a linear process, incorporating the internal and external factors that impact
individual coping.

However, the model is heavily based on the assumption that once cognitive appraisal
occurs, there is a logical, linear flow to adaptive tasks and selection of COping Skills. One
might argue that information seeking, a coping skill, must be incorporated before
cognitive appraisal can even occur.

The model requires modification to understand the role of the health care provider.
Where do health care interventions fit in the model? In addition, the adaptive tasks and
COping skills are not well described in Moos's work: instead they are simply listed in
outline form. The argument may be made that every individual will have unique adaptive

tasks to achieve, and highly individualized coping skills to utilize. The "grocery list" of

12

these factors in the model is not eSpecially helpful.

Lastly, the role of the family in COping with illness is not depicted in the model,
although Moos has discussed it more in his narrative work (1977). One is forced to
relegate the family to the "Physical and Social Environmental Factors" section of the
model, which makes it difficult to depict potential family intervention strategies.

However, Moos's model provides a springboard for further study of adaptation to
chronic illness. The variables of this study are readily integrated into the model as
antecedents to the cognitive appraisal approach to coping.

Review of the Literature

Progress has been made over the last decade in the oncology field. Cancers are being
detected earlier and treated more successfully (Loescher, Clark, Atwood, Leigh & Lamb,
1990). This translates into more individuals experiencing cancer for longer periods of
time. As a result, the health care field, and nursing in particular, is gaining interest in
mediating factors in how these individuals experience and cope with their disease. In
addition, focus has begun to shift to understanding adjustment across the entire cancer
continuum, rather than just at the initial diagnostic phase (Adams, 1991).

Cancer survivorship as a construct has been studied by a number of researchers (Dow,
1990, 1991; Loescher et al., Mullan, 1984; Quigley, 1989). In all their works, these
authors demonstrated that cancer patients' needs do not go away after treatment has been
completed. Instead, their needs change in scope and content. The focus of patients'
anxieties and distress change, but is no less compelling. There has been gradual

recognition that health care providers must better understand how these needs change as

13

 

the illness itself changes over time.
Cognitive Appraisal

Adjustment to cancer requires appraisal of the extent of threat engendered by the
diagnosis, and the likely ongoing impact of the disease and treatment. Cognitive
appraisal, as a mediating mechanism of coping, has been studied for decades within the
disciplines of Stress theory, grief, bereavement and loss theory, and crisis intervention
theory. Lazarus (1974) described appraisal as the central factor in self-regulation, in
which the individual views events and defines the likely degree of impact on personal
well—being. Demands of the situation are defined and potential coping mechanisms
explored, selected and put into use. Primary appraisal allows the individual to define the
potential impact of the stressor as beneficial, irrelevant or harmful. How serious is the
diagnosis? Will it impact the patient's way of life? What threat may it bring, to working,
relationships, even to life? Secondary appraisal involves defining resources and strategies
for dealing with the stressor event. During this stage, the patient searches for support
mechanisms and strategies to deal with the often acute stress of the cancer illness. Family
is often essential during this time. In addition, supportive and candid relationships with
health care providers may become a source of ' support and critical information. The
variables under study in this research are critical to both phases of cognitive appraisal.
However, primary appraisal was the focus of this research. Moos's (1977) model includes
COping mechanisms and adaptive tasks as an outcome of the initial appraisal of the crisis;

however, they were not explored in this study.

14

Information Needs

Primary appraisal requires accurate information. The individual with cancer requires
complete and comprehensive information in order to define the extent of threat inherent
in the cancer illness. The health care team must be able to predict and meet information
needs at the diagnostic, treatment, and adaptation phases of illness. Information is no less
critical for secondary appraisal. The patient and his family will build an inventory Of
resources to utilize to cape with the threat of the illness. The health care provider must
be able to facilitate identification of resources and cOping strategies at all phases of the
illness.

Literature exists that identifies the importance of meeting information needs at the
initial diagnostic phase. Derdarian's work (1987, 1989) with recently diagnosed cancer
patients yielded compelling support for Lazarus's (1974) theory that information seeking
is a critical task of COping. Patients and family who had received an individualized,
comprehensive information—providing intervention reported lower information needs, and
higher satisfaction and coping scores than the control group who received routine,
standardized written or verbal information. Sutherland et a1. (1989) reported, in their
work with recently diagnosed cancer patients undergoing treatment, an interesting lack of
correlation between desire for information and desire for participation in treatment
decisions. Patients actively sought information and were satisfied with the information
provided but the 63% who scored highly on the information-seeking questionnaire
preferred little or no involvement in decision-making. Cassileth, Zupkis, Sutton-Smith

and March (1980) reported that patients who wanted detailed and complete information

15

 

about their disease tended to be white and younger, better educated and more recently
diagnosed than those who preferred no information.

A gap exists in the literature that examines how information needs of clients and their
families are altered by time from diagnosis and by change in health status. Adams (1991)
discusses how information needs, and thus teaching strategies and content, may change
across the diagnostic, treatment, rehabilitation and continuing care, survivorship,
remission, recurrence and advanced disease phases of cancer care. The importance of an
interdisciplinary approach to cancer education, and of involving the entire family is
stressed. Loescher et al. (1990) examined physiological, psychological and socioeconomic
problems encountered by cancer survivors. The need for information remained as
poignant for these survivors as it seems to be for those newly diagnosed. Patients
reported feelings of vulnerability, prompting frequent contact with the health care team
for reassurance. In addition, patients reported that information from the health care
provider assisted in dealing with physical changes and problem-solving, but did not
mediate their sensation of personal vulnerability.

In summary, the paucity of literature examining the relationship between time from
diagnosis and information needs further supports the significance of this study. In this
era of cost constraints, it is critical that nurses who work with cancer patients and their
families be able to provide information that is relevant, and with timing and methods that
enhance its usefulness to clients and their families.

Relationship Satisfaction

The health care relationship, as a factor in client adjustment to illness warrants

16

careful scrutiny. While technology and sophistication in diagnostics and therapeuties have
sky-rocketed in this decade, consumer satisfaction has not (Thorne & Robinson, 1988).
Dissatisfaction is an expensive phenomenon that may be measured in terms of
noncompliance and litigation.

Moos (1977) identifies the establishment of satisfactory relationships with the health
care team as a critical adaptive task of adjusting to chronic illness. The health care
environment does not always make such a task easy, with fragmented care, tum-over of
health care providers, lack of clear information about the illness and treatment options,
confusing jargon and clearly imbalanced control acting as impeding factors.

Satisfaction has been examined in relation to physician behaviors and cancer patients'
perceived involvement in physician-patient interactions in the inpatient setting (Blanchard,
Ruckdeschel, Fletcher & Blanchard, 1986). Patients uniformly reported high satisfaction
with their oncologists (Mean = 8.56, on a 10 centimeter scale), with advancing age, poor
prognosis and positive news Offered by the oncologist correlated with higher satisfaction
scores. In addition, patients who reported higher satisfaction perceived greater
involvement and reported having had their needs better met than those who responded
with lower satisfaction scores. An interesting finding was that discussion of the family's
role in the patient's care was associated with lower patient satisfaction scores. As pointed
out by the authors, this may have been a reflection of worsening disease and greater
distress on the patient's part.

Satisfaction with the health care relationships does not remain static over the course

of the disease and treatment trajectory. Thorne and Robinson (1988), in their study of

17

26 families of chronically ill children, have identified stages of the health care
relationship in patients and families dealing with chronic illness. An initial naive trusting
stage occurs early in the relationship, as the client and family approach the health care
team with the assumption that there is a shared perspective of the client's needs. There
is an expectation that the role of the family will be held paramount. The client and
family gather information in this stage and wait in a passive mode for their needs to be
anticipated and met. This stage gives way to dissatisfaction, as the client and family
come to realize that their health care professionals may hold very different perspectives
and goals from their own. This leads to the disenchantment phase, characterized by
anger, frustration and fear. There is a perceived difficulty in Obtaining information from
the health care providers and a generalized perceived lack of accessibility. Thorne and
Robinson describe the last phase as a guarded alliance in which a COOperative model of
medical and family involvement deveIOps. The client and family have greater
understanding of the norms of the health care system and of effective ways to
communicate with the team. They remain vigilant advocates and perceive both strengths
and limitations of the health care providers. In addition, family may take steps to
decrease the emotional distance of the provider, by accepting him or her as a human
individual, rather than as the medical savior.

Understanding how relationships change over time will allow us to predict and
anticipate the client's and family's needs. By addressing these issues, we, as health care
professionals, may be able to enhance the quality of the care delivered, and in turn, the

success of the outcomes. Further research is needed to document factors that improve and

18

diminish the quality of our relationships with clients and families, and how these factors
are altered over time from the initial diagnosis.
Participation Preferences

The consumer movement in the health care arena has advocated Shared decision
making by patients and clinicians. There exists growing support for inclusion of the
client and family as partners in the treatment planning team. Parsons (1951) was one of
the early authors to address the responsibilities of the sick person: to be motivated to get
well, to seek the expertise of a professional and to trust the doctor and comply with the
medical regimen. In contrast, especially within the discipline of nursing, there has been
recent advocacy of allowing the client final decision—making power, and tailoring
treatment plans to the individual's unique needs and preferences. Success has been
reported, for example, in the use of a client-centered model of drug choice with
hypertensive patients, who were allowed to select and trial drugs. Enhanced control,
compliance and subjective report of response to therapy were reported (Gullickson, 1993).

Limited research exists that examines how cancer patients' desire for participation in
treatment decisions changes over the course of their illness. Preferences have been
measured as dichotomous variables, and usually at single points in time (Blanchard,
Labrecque, Ruckdeschel & Blanchard, 1988; Degner & Sloan, 1992). Cassileth, Zupkis,
Sutton-Smith and March (1980) found that patients who desired to participate fully in
treatment decisions were younger and better educated than those who did not. Degner
and Sloan (1992) reported that three variables impact desire for participation in health

care decisions: age, education and gender. Older patients preferred less involvement, and

19

more educated patients preferred greater participation. In addition, women were more
likely to desire involvement in decisions than men. This latter finding was not supported
by Blanchard et al.'s (1988) study, in which there existed no significant difference in
preferences between the sexes.

Only one study was found that explored differences between participation preferences
at different disease stages. Degner and Sloan (1992) reported that, contrary to
expectations, patients who were more ill did not desire less control over their treatment
decisions. Symptom distress and disease stage remained insignificant in predicting
participation preferences. In that same study, age was the most important predictor of
preferences for participating in decisions, followed by gender. These results contrasted
strikingly in the same study, when compared against a control group of healthy cohorts.
The control group reported preferring a significantly higher degree of participation than
the cancer patients did. The authors Speculated that the majority of cancer patients in the
Study were fairly recently diagnosed, and may have been psychologically vulnerable, thus
preferring a passive role until they had the information they needed to more actively
participate.~

Studies are needed to more accurately understand the role of time and experience in
mediating desire for participation. There is a Shortage of research that demonstrates what
degree of control and participation clients and their families prefer. In addition, it has yet
to be established that clients who wish a great deal of information will, in turn, use it to
participate in treatment decisions. There is a need for further controlled, longitudinal

studies to examine the patient outcomes of shared participation models.

20

In summary, there is a shortage of convincing, empirical data that describe how
individuals cOpe with cancer. Most Studies focus on the initial diagnostic and treatment
phases of illness. There is a clear lack of longitudinal research that explores the cancer
experience over time. In addition, there are few studies that examine the health care
provider's role in facilitating the coping process over the entire disease and treatment
course. Further study is needed in these areas, as well as in exploring the impact of
enhanced cOping on clinical outcomes.

Methods

This study was a secondary analysis of data from "Family Homecare For Cancer
Patients", (Given & Given, 1988). The sample consisted of 32 individuals with cancer
(out of an original total of 121 at the study onset) who completed questionnaires at all
five measurement intervals of the study. Data were compiled from self-administered
questionnaires completed by patients at three of the five intervals: three months post
diagnosis (Wave I), nine months post diagnosis (Wave III) amd fifteen months post
diagnosis (Wave V).

The following hypotheses were addressed:
1. There will be a significant main effect for time on all three of the
dependent variables over time.
2. There will be a significant effect on the means Of all three dependent
variables over time related to the factors of age, gender, education and

income.

21

3. There will not be a significant effect on the means of the three dependent
variables over time by the severity of the patient's illness at each wave.

.SMPE

Given and Given's original study (1988) used a non-probability convenience method.
For further information regarding specific aims of the original study, see Appendix B.
The sample for the present study was comprised of 32 individuals (male and female) with
new cancer or new recurrence of disease who had completed the questionnaires at all
three Of the measurement intervals (three, nine and fifteen months post—diagnosis.) All
were English-speaking, with solid tumors, leukemia or hodgkins lymphomas; between the
ages of 20 and 90, with an active caregiver who was also willing to participate in the
study. All patients required some assistance with activities of daily living. All subjects
indicated consent to participate by completing an informed consent form (see Appendix
C).
DataL Collection Proccflrres

Subjects completed questionnaires that were mailed to them in return addressed,
stamped enveIOpeS. Data was compiled from questionnaires completed by patients three,
nine and fifteen months post diagnosis.
metational Definititfl

The dependent variables were operationalized as follows from the Treatment—related
Demands of Illness Inventory (Woods, Haberman & Packard, 1984, 1987):

(1) Information needs are the patient's perceived need for more information

about the disease and treatment than is already possessed. Patients were

22

asked, for example, to what extent they have wanted more facts about
treatment, or wanted to know why they were asked to do something in
particular for treatment. This variable is addressed in items 7 and 11 of
the Treatment-Related Demands of Illness Inventory.

(2) Relationship satisfaction is the patient's perception that the health care
provider does not care for him or her as an individual. Patients were asked
to what extent their health care providers have been insensitive to their
preferences, acted as if their Opinions were unimportant or not shown
concern for them as individuals. This variable is addressed in items 1, 2,
3, 5, 6 and 14 of the Treatment-Related Demands of Illness Inventory.

(3) Participation preferences are the patient's perception that he or she has not
been included enough in treatment decisions. Patients were asked to what
extent they have felt rushed to make hasty decisions, wanted to be more
assertive in the decision—making process or wanted to question decisions
but been unable to. This variable is measured in items 4, 8, 9, 10 and 12
of the Treatment-Related Demands of Illness Inventory.

Time, the independent variable, is defined as the number of months from diagnosis
of new or recurrent disease, to be expressed by wave number: Wave I was three months
post diagnosis; Wave III was nine months post diagnosis; Wave V was fifteen months
post diagnosis.

Background factor definitions of age and gender are self—explanatory. Education and

income was defined categorically (see Table 1).

23

Severity of illness was measured by the patient's perceived symptom experience.
Patients indicated whether their experience with a number of given symptoms was mild,
moderate or severe. If a given symptom was not experienced at all, the patient left it
blank.

Instrumentation

The instrument used was the Treatment Issues subscale of the Demands Of Illness
Inventory (DOII), by Woods, Haberman and Packard, (1984, 1987). The DOII measures
demands commonly experienced by patients and family members dealing with chronic
illness, including the challenges of managing treatment regimens and Side effects,
maintaining family functioning, managing symptoms, maintaining body image and seeking
causal explanations for illness (Haberman, Woods & Packard, 1990).

The scale uses a S-item likert format, based on two stem sentences (see Appendix
D). Three items (questions 13, 15 and 16) were eliminated for this study after
psychometric testing revealed that they measured global satisfaction with medical care,
a construct that is beyond the scOpe of this study. Therefore, only thirteen items will be
included.

The DOH has been used with a number of chronic illnesses including diabetes, breast
cancer, and fibrocystic breast disease in the Family Impact Study (F IS) (Haberman,
Woods & Packard, 1990). The instrument was also utilized in the Family Functioning
during Chronic Illness study (FF CI), a secondary project by the same authors. In this
study women with breast cancer and diabetes were compared. The instrument is scored

on both the number of illness demands as well as their intensity. Following the FFCI

Haberman, Woods and Packard (1990) reported alpha coefficients of 0.89 for the number
scoring, and 0.92 for the intensity.

Factor analysis of the instrument by Given and Given (1988) revealed four
"subconcepts" within the Treatment Issues subscale: information needs, satisfaction with
medical treatment, participation, and relationship satisfaction. As mentioned above,
satisfaction with medical treatment will not be considered in this study. Alpha
coefficients for the remaining three concepts are: Information Needs: 0.73; Relationship
Satisfaction: 0.84; Participation Preferences 0.82.

Construct validity was established by Haberman, Woods and Packard (1990) using
extensive literature review. In addition, contrasted groups method was used with three
distinct illnesses (diabetes, fibrocystic breast disease and breast cancer) and supported the
validity of the instrument. The authors also compared the instrument with other
standardized instruments used in the Family Impact Study and concluded that the
instrument contained significant measures of coping (Haberman, Woods & Packard,
1990). No further validity testing was carried out by Given and Given (1988).

Me

The DOII is scored for number and intensity of demands. Items are scored on a five
point likert scale ranging from 0 indicating "not at all' to 4 indicating "extremely". There
are two stem statements in the modified Treatment Issues subscale; "At times some of my
health care providers have...", and "As I've experienced my illness Situation, I've...". The
higher the DOII score, the more demands (or needs) exist. Thus, for example, a high

"satisfaction" score, actually indicates a high degree of dissatisfaction. The frequency

25

of occurrence score is the number of items in the subscale rated 1 or greater. The
intensity score is the summative score on each of the variable item groups (eg.
information needs). Frequency scores will not be used for this study. Only mean intensity
scores will be used in the analysis (range 0 to 4).

Symptom severity was scored 0 to 4. If the patient did not experience a given
symptom at all, the response was left blank, and a "0" was scored. If the symptom was
experienced, the patient was asked to rate it as mild, moderate or severe, and number
scores were assigned to each response (1 for mild; . 2 for moderate; 3 for severe.) This
allowed calculation of mean symptom experience at each of the measurement intervals.
Data Analysis

The research design was exploratory, using secondary analysis of data from a
longitudinal field Study. No external manipulation of the independent variable (time from
diagnosis) was feasible, and there was no randomization or control group. Exploratory
studies are characterized by detailed analysis of a concept or construct. In addition,
exploratory research implies that there is a lack Of knowledge about the tOpic, and
therefore limited research upon which to build (Brink & Wood, 1988).

Descriptive statistics were utilized to define the demographics of the sample:
frequency distributions and percentages were collated for background data such as gender,
marital status and diagnosis. Ranges, means and standard deviations were identified for
interval and ratio measures, such as age. Education and income were measured
categorically and were represented by frequency tables. The following tests were utilized

to address each hypothesis:

26

1. Hypothesis # 1 : Mean intensity scores of the 32 subjects were calculated
for the three dependent variables and compared at waves I, III and V.
Three repeated measures analysis of variance were used to determine the
significance Of the difference in the three means.

2. Hypothesis # 2: One-way repeated measures analysis Of variance was used
to determine the effect Of the factors gender, age, education and income
on the three dependent variables.

3. Hypothesis # 3: One way repeated measures analysis of variance was used

 

to determine the confounding effect Of symptom experience on the three
dependent variables over time.

Repeated measures one—way ANOVA was used to examine the significance of the
difference in the means, because three means were to be compared, thus eliminating the
paired t-test method as an Option. While change scores might have yielded more accurate
information about individual trends across the three time intervals, it was determined to
be beyond the scope of this study.

Because the sample size was so small, only two cells were built for the factors to be
used in the ANOVA for hypothesis # 2, to avoid having any empty cells. Frequency
tables were studied for each Of the four factors and the median score was used to break
the sample into two categories (see Table 9).

Assumptions of the Study
Assumptions Of the study include the following:

1. Caregiver education may be used as a proxy measure Of patients' education

27

level.

There was no significant change in the factors age, gender, education and
income over the course of the three measurement intervals, thus allowing
a single measure of these at the study onset to suffice.

Marital status showed SO little variation that it may be eliminated as an

important background factor influencing the dependent variables.

Limitations Of the Study

Limitations of this study included the following:

1.

The study design used secondary analysis, thus limiting the ability to gather
precisely the data desired.

The sample size is very small, thus limiting the ability to generalize the
results. In addition, only patients with cancer were included in the data set,
therefore limiting the researcher's ability tO infer conclusions to other
chronic illnesses.

The statistical method used (repeated measures analysis Of variance) by
utilizing group means, lost valuable information about individual scores.
However, this sacrifice was deemed necessary, as calculating individual
change scores was beyond the scope of this project.

There was a degree of selection bias in the sampling method. By utilizing
only those subjects who remained on study at wave V, the researcher may
have introduced an unexplored "difference" into the sample. Those

subjects who remained may possess different characteristics from those who

28

 

dropped which may have impacted the dependent variables as well.
Protection of Human Subjects
Protection of the rights of human subjects was maintained by using identification
codes only during all data analysis. Only aggregate data was utilized. NO individual's
name was ever available to the researcher during the study. Approval from the University
Committee on Research Involving Human Subjects (U CHRIS) for this research study was

received.

Findings

The sample to be described consisted Of 32 patients who returned all three self-
administered questionnaires (SAB'S). Of the original 51 patients involved at the study
outset, 42 returned the three month (Wave I) SAB, 36 returned the nine month (Wave III)
SAB and 35 returned the fifteen month (Wave V) SAB.

Mean age of the sample was 58.9 years (SD. = 14.56). Exactly half the sample was
female, and half was male. Almost all Of the subjects were married (90.6%). Patients'
average annual household income was $37,714 (SD. = 17,500). Of the sample, 17 (53%)
had completed high school, while 3 (9.4%) had completed college. The most common
diagnosis was colon cancer, followed by lung cancer. All patients were undergoing
treatment at the study outset, the majority receiving chemotherapy. Table 1 summarizes
the demographic characteristics Of the sample. Table 2 illustrates disease and treatment

characteristics of the sample.

29

Table 1.

Sociodemographic characteriflcs Of the sample

 

 

 

Characteristics 1! %
Age
20-30 2 6.2
31-40 2 6.2
41-50 4 12.5
51-60 7 21.9
61-70 8 25.0
71-80 8 25.0
81 + 1 3.1
Gender
Male 16 50.0
Female 16 50.0
Marital Status
Married 29 90.6
Single 1 3.1
Divorced 1 3.1
Widowed 1 3.1
Highest Grade Completed
Grade school 1 3.1
Some high school 3 9.4
High school 17 53.1
Some college 8 25.0
College 3 9.4
Patient Household Income
<$20,000 4 12.5
$20,000-$35,000 10 31.2
$35,001-$50,000 7 21.8
350,001—365,000 4 12.5
$65,001-$75,000 3 9.4
Missing 4 12.5

 

30

Table 2

Disease and treatment characteristics Of the sample

 

 

Characteristic n %
Diagnosis (Primary cancer site)
Breast 5 15.6
Colon 10 31.3
Gastrointestinal 1 3.1
Gynecological 1 3.1
Lung 7 21.9
Lymphoma 4 12.5
Leukemia 1 3.1
Brain 1 3.1
Hodgkin's 1 3.1
Other 1 3.1
Current Treatment
Hormonal modalities 1 3.1
Chemotherapy 24 75.0
Radiation therapy 4 12.5
Surgery 8 25.0
Oral chemotherapy 3 9.4
Other 3 9.4
Diagnosed Recurrence
Yes 6 18.8
NO 26 81 .3

 

Analysis Of Research Questions
Question # 1. How do clients' information needs, participation preferences and
satisfaction with health care relationships change over time?
Mtion Need_s over Time
Information needs diminished over time (see Table 3), with the largest drop between

Wave I and Wave III (three and nine months post diagnosis). Standard deviations were

31

large at all three waves. Individual responses ranged from 0, indicating patients
eperienced no problem with unmet information needs at all, to 4, indicating patients were
extremely bothered by unmet information needs. Repeated measure analysis of variance
(ANOVA) revealed the difference in the means to be significant (p _<_ .05), with an F
score Of 4.49 and significance of 0.016 (see Table 4).

Table 3

Mean Information Need; over Time

 

Wave I Wave III Wave V
Mean (Range 0 - 4) 1.50 1.05 .90
Standard deviation 1.27 1.13 1.14

 

Table 4

Repe_ated Measures AN OVA: The effect Of time on information needs

 

Variation S.S. D.F. M.S. F. Sig.
Within-subject 37.87 54 .70
Time 6.29 2 3.15 4.49 .016

 

Participation Preferences over Time

Like information needs, participation preference scores dropped Off at each wave,
indicating subjects felt less excluded from decision making at each wave. The largest
drOp was between three months (Wave I) and nine months (Wave III), however scores

were uniformly low, with relatively small Standard deviations (see Table 5). AN OVA

32

 

demonstrated the difference between the means to be less than significant (see Table 6).

Table 5

Mean gficigtion preferences over time

 

Wave I Wave III Wave V
Mean (Range 0 - 4) 0.55 0.20 0.19
Standard deviation 0.83 0.39 0.45

 

Table 6

Repeated measures AN OVA: The effect Of time on participation preferences

 

Variation S.S. D.F. M.S. F. Sig.
Within-subject 8.81 54 0.16
Time .81 2 0.41 2.49 .093

 

Relationship Satisfaction over Time

Relationship satisfaction scores did not follow the same pattern as the previous two
variables. The group mean score drOpped at nine months (Wave III), and then climbed
to its highest level at fifteen months (Wave V) (see Table 7). However, the means were
again uniformly low (the highest individual mean score for relationship satisfaction was
1.67, on the 0 to 4 scale). F score failed to achieve significance at the .05 level (see table

3).

33

 

Table 7

Mean relationship satisfaction over time

 

 

Wave I Wave III Wave V
Mean (Range 0 - 4) 0.12 0.05 0.17
Standard deviation 0.24 0.12 0.38

 

Table 8

Remated megs_ures AN OVA: The effect of time on relationship satisfaction

 

Variation S.S. D.F. M.S. F. Sig.
Within-subjects 2.43 54 0.05
Time 0.24 2 0.12 2.72 .075

 

Question # 2. DO the background demographic factors age, gender, income and
education influence the dependent variables over time?

Following an analysis Of the characteristics Of the sample, and review of the literature
to select factors that may confound the relationship between the dependent variables and
time, four factors were selected. The sample was divided into two groups for each factor.
Age was divided into those younger than 60, and those Older. Division Of gender is self
explanatory. Income groups were defined as less than or equal to $32,500, and greater
than or equal to $37,500. Education was grouped by "completed high school or less”, or
"some college or more". Means and standard deviations were computed for each group

on the three dependent variables at the three waves (see Table 9).

34

Table 9

Mean demndent variable scores by age, gender, income and education

 

 

 

Wave I Wave III Wave V
Information Needs
< 60 1.96 1.36 1.20
2. 60 1.09 0.79 0.62
Male 1.23 1.03 0.69
Female 1.77 1.06 1.13
5 $32,500 1.31 0.93 0.96
2, $37,500 1.69 1.08 0.86
High school or < 1.31 0.97 0.77
Some college or > 1.94 1.18 1.14
Participation Preferences
< 60 0.63 0.16 0.25
z 60 0.34 0.19 0.08
Male 0.28 0.24 0.05
Female 0.67 0.11 0.28
5 $32,500 0.28 0.23 0.07
2 $37,500 0.57 0.14 0.26
High school or < 0.44 0.18 0.05
Some college or > 0.56 0.14 0.26
Relationship Satisfaction
< 60 0.13 0.10 0.22
2 60 0.11 0.02 0.13
Male 0.14 0.03 0.08
Female 0.10 0.07 0.27
5 $32,500 0.14 0.02 0.11
2 $37,500 0.14 0.10 0.27
High school or < 0.10 0.03 0.13
Some college or > 0.17 0.09 0.26

 

35

AN OVA's were computed for each dependent variable by the four factors (see Table 10).
Interaction effects between the factors were not examined.
Table 10

AN OVA: The effects of age, gender. income amd education on the dependent variables

 

 

S.S. D.F. M.S. F. Sig.

Information Needs
by age:

Within cells 37.72 52 0.73

Time 6.36 2 3.18 4.39 0.17

Age by time 0.15 2 0.08 0.10 0.90
by gender:

Within cells 35.83 52 0.69

Time 6.29 2 3.15 457 0.01

Gender by time 2.04 2 1.02 1.48 0.23
by income:

Within cells 35.43 46 0.77

Time 5.83 2 2.91 3.78 .030

Income by time 0.35 2 0.17 0.23 .799
by education:

Within cells 36.98 52 0.71

Time 7.15 2 3.57 5.03 .010

Education by time 0.90 2 0.45 0.63 .535
Participation Preferences
by age:

Within cells 5.90 52 0.11

Time 0.74 2 0.37 3.26 .046

Age by time 0.64 2 0.32 2.84 .068

36

Tible 10 Conjfi
by gender:

Within cells
Time
Gender by time

by income:
Within cells

Trme
Income by time

by education:

Within cells
Time

5.70
0.66
0.84

5.96
0.68
0.44

6.11
0.70

Education by time 0.43

Relationship Satisfaction

by age:
Within cells
Time
Age by time
by gender:

Within cells
Time
Gender by time

by income:
Within cells
Time
Income by time

by education:

Within cells
Time

2.38
0.25
0.05

2.24
0.24
0.19

2.27
0.28
0.13

2.38
0.28

Education by time 0.05

52

52

Iowa

52

NM

0.11
0.33
0.42

0.13
0.34
0.22

0.12
0.35
0.22

0.05
0.12
0.02

0.04
0.12
0.09

0.05
0.14
0.07

0.05
0.14
0.03

3.03
3.84

2.64
1.71

2.97
1.84

2.72
0.52

2.83
2.17

2.86
1.32

3.07
0.57

.057
.028

.082
.193

.060
.169

.076

.068
.124

.068
.277

.055
.567

 

37

 

Question # 3. Is there a confounding effect for severity of illness on the dependent
variables over time?

To examine the potentially confounding effect of the severity Of patients' symptoms
on the dependent variables over time, mean symptom severity scores at each wave are
reported, along with standard deviations (Table 11). The range Of symptom severity
scores was 0 to 3, with 0 indicating the symptom was not experienced at all, 1 indicating
severity was "mild", 2 indicating severity was "moderate", and 3 indicating severity was
"severe". Mean severity Of symptoms diminished at each wave, an unexpected finding,
with the largest drOp between waves I and III. Repeated measure AN OVAs are reported
for the influence of symptom severity on each dependent variable at each wave (see Table
12). The only dependent variable significantly affected by symptom severity was
relationship satisfaction (p 5 .05), and this was apparent only at the nine and fifteen
month post diagnosis measurement intervals (Waves HI and V).

Table 1 1

Mean symptom severity at each wave

 

Wave I Wave III Wave V
Mean (Range 0 — 3) 0.56 0.43 0.37
Standard deviation 0.34 0.43 0.34

 

38

 

Table 12

Regated measures AN OVA: The effect Of symptom severity on the dependent variables.

 

85. DP. M.S. F. Sig.
Information Needs:
Within—residual 32.91 48 0.69
Time 2.25 2 1.12 1.64 .205
Symptom Severity
Wave I 0.36 2 0.18 0.26 .773
Wave [II 3.17 2 1.58 2.31 .110
Wave V 3.79 2 1.89 2.76 .073

Participation Preferences:

Within-residual 8.25 48 0.17

Time 0.03 2 0.02 0.10 .909

Symptom Severity
Wave I 0.26 2 0.13 0.76 .474
Wave III 0.22 2 0.11 0.65 .527
Wave V 0.16 2 0.08 0.46 .637

Relationship Satisfaction:

 

Within (residual) 8.25 48 0.03
Time 0.01 2 0.01 0.17 .845
Symptom Severity
Wave I 0.04 2 0.02 0.51 .603
Wave III 0.30 2 0.15 4.26 .020"
Wave V 0.74 2 0.37 10.64 .000“
Discussion

The limited size of this sample is problematic, limiting the researcher's ability to infer
the results to the larger population. However, these findings will provide beginning

conclusions upon which to build further research in the area of coping with cancer over

39

the course of the disease. The sample proved tO be small, and fairly homogenous.
Variation in age, marital status, education and income was very limited. Information on
the patient’s race is not available, and might be a worthy factor to include in further
studies. In addition, type of cancer and type of treatment might provide further insight
into the coping variables. For example, one might wonder if patients receiving
chemotherapy perceived higher information needs than those receiving hormonal therapy.
Because the sample size in this study was so limited, these factors were not examined
independently.

The findings Of this study revealed that information needs taper Off over time, with
the largest drop occurring between three and nine months post-diagnosis (Waves I and
III.) These results suggest that patients feel least informed at the early diagnostic and
treatment phase of their illness, but that as time goes on, they feel more informed.
Scores, however, were low for most patients (the highest group mean, at three months
(Wave 1), was 1.50, on a 0 to 4 scale.) ANOVA revealed a Significant relationship
between time and information needs. The alpha coefficient was fairly high (alpha = .71),
indicating satisfactory reliability for this subscale.

These data support the hypothesis that information needs are directly affected by time
from diagnosis. This is an important finding, for it indicates that one may anticipate and
predict that patient's information needs will be most acute early in the diagnostic phase
of illness and will diminish over time. This is supported by a majority Of the literature
on information needs.

Participation preferences, like information needs, dropped between three months

40

 

i‘i"

(Wave I) and nine months (Wave III), and then climbed very slightly at fifteen months
(Wave V). Standard deviations were slightly smaller than those Of the information need
means, indicating slightly less variance in responses. ANOVA failed to detect a
significant relationship between time and participation preferences (F = 2.49, Significance
= .093). Scores were uniformly low, and varied little across time, indicating that few
patients felt they weren't able to participate enough. This may indicate that participation
preference as a trait is less determined by external events than by psychological make-up
and socialization by one's culture. Reliability analysis Of this subscale revealed
satisfactory reliability (alpha = .82). These findings do not support the hypothesis that
time will have a direct effect on participation preferences over time.

Relationship satisfaction mean scores were the lowest of all three dependent variables
(group means of .05 tO .17, on the 0 to 4 scale), indicating a high level Of satisfaction.
This may be due to the rather universal phenomenon Of patients' reluctance to admit to
dissatisfaction with their health care providers. In addition, the alpha coefficient was
very low (alpha = .28), indicating poor reliability Of this subscale. Group means dipped
at nine months (Wave III) and then climbed to their highest level at fifteen months (Wave
V), indicating patients were most satisfied at nine months and least at fifteen months.
This may be due to diminished contact with health care providers at this stage of the
disease, as treatment is likely to have been completed fifteen months post diagnosis.

AN OVA failed to detect a significant relationship between time and relationship
satisfaction, thus hypothesis # 1 is not supported.

Only one dependent variable, participation preferences, appeared to be significantly

41

influenced by a background factor, gender (see tables 9 and 10). The male group mean
score at three months was lower then the female mean, indicating that women felt less
a part Of the decision making process than did men. Both means dropped at nine months.
However the male group mean continued tO drop Off at fifteen months, while the female
group mean climbed again. This suggests that while men feel increasingly involved in
treatment decisions over time, women perceive higher participation needs, indicating they
feel more excluded from decision making early in the disease process, and again at later
stages. This supported the work of Degner and Sloan (1992), who found in their study
that women with cancer prefer more control in treatment decisions than do men.

Although there were no other statistically significant relationships between the
dependent variables and the four demographic factors, the data reveals a number Of
nonsignificant trends that provide implications for further study. 'Mean group scores for
those under sixty years of age were consistently higher than those of Older individuals on
all three dependent variables, supporting the findings of previous researchers who found
that younger individuals tend to want more information, more participation, and tend to
express lower satisfaction scores than Older individuals (Degner & Sloan, 1992; Cassileth
et al., 1980; Blanchard et al., 1986).

Although a statistically significant relationship was not identified, education also
appears to influence the dependent variables. The group means Of those with some
college education were consistently higher than those with high school education or less,
indicating higher information needs, a desire for more participation, and higher

dissatisfaction with the health care relationship.

42

Severity of illness was a concern for this study in that it is difficult to extricate from
time as an independent variable. The conceptual model, in addition, represents illness-
related factors as important influences on the coping process, and, potentially, on the
dependent variables (see Figure 1). Thus symptom severity was considered at each of the
three waves, and AN OVA's were computed to evaluate the potential for a confounding
effect. The trend in symptom severity was unexpected, and remains difficult to explain.
With the high rate of attrition due to morbidity and mortality, it was surprising that, on
the average, patients reported lower symptom severity at each wave. In addition, mean
severity scores were comparatively low at all three waves (less than 1, on a 0 to 3 scale),
indicating patients generally felt their symptoms to be mild.

Only one dependent variable was significantly influenced by the severity of
symptoms. The relationship between symptom severity and relationship satisfaction was
significant, although only at nine and fifteen months (Waves III and V). It is possible
that at initial diagnosis, other factors are more important in predicting satisfaction, but that
as symptoms diminish, patients have less contact with the health care setting, producing
dissatisfaction with their providers. As mentioned earlier, conclusions are somewhat
limited by the poor reliability of the relationship satisfaction subscale.

In summary, three statistically significant relationships are suggested by these
findings. First, time may predict cancer patients' needs for information. Patients report
feeling more informed as time passes from diagnosis. Secondly, gender may predict
patients' participation preferences. Women report higher needs than men both early and

late in the disease trajectory, indicating they feel more excluded from decision making

43

than do men. lastly, the severity of the patient's illness may predict his or her
satisfaction with the health care provider. AS symptom severity diminishes over time,
satisfaction also decreases.

The data from this study, then, fails to predict several of the relationships that are
depicted by the modified version Of Moos's (1977) conceptual framework (see Figure 1).
It does successfully conceptualize the impact of time on information needs, but not on the
other two dependent variables. Figure 2 illustrates the relationships that were established
as statistically significant by this study. It is possible that a more effective way to use
Moos's model would be to establish and test separate scales for each of the dependent
variables. In addition, more extensive demographic data collection might allow the
researcher to more thoroughly examine the role of environmental background factors in
predicting the dependent variables. However, Moos's model is useful in examining the
antecedents to COping and how they change over time. It suggests future direction of
study that may illuminate specific factors that better predict participation preferences and
relationship satisfaction than does time, such as cultural and social characteristics.
Although Statistical analysis failed to confirm significant relationships in other areas,
several additional trends in the data are worthy of note. In general, women reported
higher needs in all three of the dependent variables; they perceived higher unmet
information needs, felt more excluded from decision making, and were less satisfied with

health care relationships.

 

Figpre 2. Moos's model ( 1977) (revised): Sigm’ficant relationshifi confirmed by this

 

 

 

 

 
   
   

 

 

 

 

 

study
, TTNE ._ ______
I l
U I
I
I
INFORMATION
NEEDS 1
’ (Condor I COGNITIVE
.acxcaouun AND I P:RTICIPATION
PERSONAL FACTORS “3’3‘3"°35 ,RAISAL
* 1

 

 

ILLNESS-RELATED (SY'II to-
l FACTORS Severity ) RELATIONSHIP
SATISFACTION

 

Dashed Lines = Statistically
Significant
Relationships

 

 

E

HEALTH CARE TEAM

45

Women also demonstrated higher variability patterns across each time interval than men;
men's needs tended to drop at each wave, whereas women's responses dipped and climbed
again. Younger patients tended to report higher needs than did their older counterparts,
a finding that supports Degner and Sloan's study (1992). In addition, the more highly
educated patients generally reported higher needs than those who were less educated.
Implications for Advapced Practice NI_I;Si_ng

This research has a number Of implications for the CNS in the primary care setting.
Primary care should serve four critical functions (Parker, 1975). First, it serves as an
"entry point" for the client into the health care system, from which screening and referrals
are initiated. Secondly, primary care provides the client and family with a full range of
comprehensive services to maintain health and wellness, and manage common illnesses
so as to minimize disability. Third, primary care offers supportive, long-term
relationships for clients and families with providers, which are critical during health care
transitions and times of acute illness. Lastly, primary care provides coordination and
long-term management of available health care services across the life-span and across
the health-illness continuum.

The role of the primary care CNS, then, should be to facilitate the above functions.
Individuals experiencing the threat or actuality of cancer have a multitude of needs that
this professional is uniquely qualified to meet. The CNS functions within the Clinician
role to provide screening, assessment and physical management to the individual with
cancer. Within the educator role, the CNS provides the patient and family with the

information and skills they need to maintain self-care and to Operate successfully within

46

the health care setting. As client advocate, the CNS establishes relationships with the
client and family that are built upon mutual trust and respect, and that recognize the right
to self-determination every individual possesses.

It is not enough to understand the needs of the patient with cancer only at the initial
diagnostic phase of illness. Cancer has become a chronic disease, due to medical
advances, and patients often deal with the Stress of the disease for many years or even
over the remainder of their life span. Helping individuals with cancer and their families
to cope with the disease across the illness trajectory is increasingly important, as, more
and more, long-term survival becomes a reality.

This research explored the issue of how patients cope with cancer over time, with the
goal of identifying areas in which the CNS can play an important role in fostering COping.
Three behaviors were identified as important antecedents to individual coping from
literature review and application of the theoretical framework: seeking information,
establishing satisfactory relationships with the health care provider, and participating in
treatment decisions. Understanding how patients' needs change in these three areas over
time will provide beginning intervention strategies for the CNS.

The findings suggest that the magnitude of patients' information needs is influenced
by time from diagnosis. Patients report needing the most information at the early
diagnostic phase of the illness, although it must be recognized that reported information
needs were very low even at the three month measure. While information needs diminish
over time, they do not cease. The CNS can use these findings in practice. Offering the

individual and family the Opportunity to identify their questions, especially during the

47

traumatic diagnostic and early treatment phase of illness is critical. Maintaining contact
with the patient, even if he or She is being treated in the acute care setting, will help to
provide a source of continuity, support and information.

There existed a fair amount of variability in the means of all three dependent
variables across the three time intervals. This finding suggests that the CNS cannot
assume that individuals who have few needs early in the disease trajectory will continue
tO experience few needs as time goes on. Needs assessment should be carried out at
every visit with the patient, and as the need for office visits decreases over time,
assessment and contact should be maintained, perhaps by such other means as letters and
telephone calls.

While this study failed to identify a significant relationship between participation
preferences and time, it is still useful to note that patients seemed to feel most excluded
from the decision-making process early in the illness, indicating that it is especially
critical to include the patient at this stage as an active member of the decision-making
team. In addition, women, more than men, appear to feel left out of decisions later on
in the illness. The CNS can reinforce the patient's right to be an informed decision-
maker at all stages Of the disease, not only by providing information, but also by assisting
with values clarification, identifying individual goals, and reinforcing patients' esteem and
confidence as they deal with the often intimidating health care environment.

This research failed to establish a significant interaction between satisfaction with
health care relationships and time. However a nonsignificant trend may still be noted

across the three waves. Satisfaction appeared to be highest during the "mid-phase” of

48

illness (nine months post diagnosis). This may be because the patient has already lived
through the highly stressful initial diagnostic phase, and has either acclimated to or just
completed treatment. It is likely that patients in this stage are still receiving regular
follow-up with the health care provider, a factor that may improve patients' satisfaction.
AS speculated earlier, satisfaction may diminish as contact with the provider tapers off.
This has ramifications for the CNS; although patients may be physically stable and even
recovering, contact with the health care team remains important to them. The CNS can
remain a dependable link with the patient and family, by maintaining follow—up visits and
phone calls with the patient and family. In addition, the CNS can prepare the patient and
family for the expected ambivalence they may feel as they receive less frequent
monitoring over time. Identifying and helping patients to access other resources available
in the community may provide additional support.

Severity of the patient's symptoms significantly impacts satisfaction with the health
care relationship, especially later in the disease trajectory. This is an especially
interesting finding in this group, who described their symptoms as less severe as time
went on. This may support the above Speculation that patients are less satisfied with their
provider as their contact with him or her diminishes. This supports the work of Hydzik
(1990) who has described a "conversational isolationism" experienced by cancer survivors,
in which they are reluctant to talk about the fears and anxieties of living with cancer
because they believe others (including their health care providers) want to "move on".
Thus they may have unmet needs that they are not expressing, and, as a result, feel less

satisfied with their provider. Patients may also be very fearful of recurrence as time goes

49

 

on, and be counting on the health care professional to reassure them. The CNS can assist
by helping patients in this phase to take on some self—monitoring tasks to detect early
signs of recurrence. This will enhance self-efficacy and decrease the patient's dependence
on the provider. The researcher's ability to further interpret these findings is somewhat
limited by the fact that this sample did not experience the expected escalating severity Of
illness, making it difficult to predict how patients' needs change as they become sicker.

Moos's model provides a useful framework for understanding the multitude of factors
that impact the COping process. Further work will refine it further. The longitudinal,
one-way depiction of coping is limiting, and fails to depict the typical "pendulum" swing
of COping, as individual are repeatedly stressed and then able to rally during the normal
course of chronic disease.

Implications For Further ReseaLch

This study was limited by a small, homogenous sample, and by a subscale with
questionable reliability. Future research warrants larger sample size and random design
to limit the potential for participation bias.

Time proved to be a difficult variable to isolate. This Study was unable to clearly
separate the impact of time from other background factors influencing information needs,
partiCpation preferences and satisfaction with health care relationships. Additional
measures of severity of illness, as well as of background factors and how they may be
altered over time from diagnosis, might yield more clarity and confidence to conclusions
that may be drawn using time as the independent variable.

The Treatment-related Demands of Illness Inventory may be most valuable when

50

used in conjunction with other instruments to further refine its reliability. Its use as a
single instrument broken down further into subscales proved to be problematic. With
only two items measuring information needs, the sample size required to be truly
confident of the results would be quite large. The instrument is too Short to effectively
measure three isolated concepts; items should be added for each of the concepts to be
measured. Further use of this instrument, especially with other diseases will also enhance
its usefulness.

The measurement intervals in this study, in retrospect, may also have been
problematic. A number of patients may have completed their treatment by the fifteen
month measure. Thus treatment related issues may have been less pressing. Information
needs may well have remained high, however the instument used measures only those
related to treatment. Thus information needs related to other issues may still exist. Future
studies might benefit from limiting measurement intervals to closer to diagnosis, so as to
capture only those needs related to treatment. Another Option would be to alter the
instrument so as to capture needs related to issues other than treatment, such as self care,
detecting recurrence, monitoring symptoms and reentering the work force.

Satisfaction remained a somewhat muddy concept in this study, especially in
maintaining Clear definitions. The Treatment-related Demands of Illness Inventory
subscale, because it it negatively worded, appears to measure relationship dissatisfaction.
An Option for future research, rather that to place the concept onto a continuum, might
be to alter the wording of the instrument so as to capture patients' degree of satisfaction.

This might also yield interesting information on the phenomenon of subjects' reluctance

51

to express negative feelings about their providers. Would uniformly high satisfaction
scores result?

Questions to be addressed by further research include: what is the interaction between
information needs, satisfaction and participation warrants further study? Do patients who
feel their information needs are met feel more satisfied? And do they participate more?
How do these variables impact clinical outcomes? In addition, further research may
reveal how the content of patients' information needs change over time. It has been
suggested in the cancer survivorship literature that patients need more information about
reentering the work force, about insurance and legal issues as time goes on, and less
about the daily physical demands of the illness. Further research is needed to pinpoint
how these needs change and when.

In addition, the influence of backgound factors on information needs, satisfaction,
and participation should be explored more carefully and the interaction between them
examined. For example, do younger women desire more information than older women?

Examining the role of particular cancer diagnoses in predicting information needs and
participation preferences might provide useful information as well. Larger sample size
and random design will strengthen the conclusions that may be drawn, by allowing
comparison with healthy cohorts.

Summary

This Study has addressed how information needs, relationship satisfaction, and

participation preferences, as antecedents to coping, change over time. Trends over a

fifteen month period post diagnosis of new or recurrent disease were examined. The

52

effects of backgound demogaphic factors on these antecedents were considered, as well
as the potentially confounding effect of severity of patient symptoms.

The significance of the findings are limited by the sample size and sampling method.
However ramifications for the CNS in primary care are identified. Strategies for
improving the effectiveness of patient teaching, for enhancing the health care relationship
with the client and family, and for maximizing the patient's role as an active participant
in treatment decisions have been discussed. Further longitudinal research, using random
sampling techniques and yielding more diverse samples of subjects will allow greater

confidence in interpretation and generalization to the larger target population.

53

APPENDICES

AppendixA

 

 

 

 

 

 

 

   
 
 

 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Con Model of 'on to Ph ieal esss Moos 97 .
BACKGROUND AND
PERSONAL FACTORS
j COGNITIVE
‘ APPRAISAL OUTCOME
ILLNESS-RELATED IPERCEIVED ADAPT'VE 00""5 OF
PACTORS MEANING TASKS SK'U-S CRISIS
OF ILLNESSI
PHYSICAL AND SOCIAL l '
ENVIRONMENTAL ..
FACTORS

 

 

54

APPendixB

Aims of ”Family Homecare for Cancer - A Community Based Model”, grant # NR01915

1.

To describe over seven Observation periods caregivers' and patients'
physical and mental health states.

To describe over seven observation periods caregivers' and patients' and
others' involvement in tasks of caregiving and symptom management.
To describe over seven Observation periods the formal assistances utilized
and social supports available to caregivers of patients with cancer.

To determine how the physical and mental health states of newly diagnosed
and patients with recurrence/metastases, and work/social roles influence
caregivers' mental health states and their physical and mental health
outcomes and reactions to caregiving.

To determine how the levels and stability Of caregiver involvement in tasks
and symptom management interacts with caregivers' mental health states
leading to caregivers' outcomes and reactions to caregiving.

To determine the conditions (patient physical health, caregiver mental
health, caregiver involvement and caregiver work/social roles) under which
formal assistance and social support may modify caregiver outcomes.

To determine the interaction among conditions (i.e. patient physical, mental
health States, and caregiver mental health states) under which levels of
caregiver involvement, formal assistance and support are related to

caregiver outcomes and reactions to caregiving.

55

Appendix C

CONSENT FORM

The Study in which we are asking you to participate is designed to learn more about the
ways in which cancer affects the individual with cancer. Over the next 18 months,
individuals will be asked to complete a questionnaire about your health status and
symptoms. Each questionnaire will take approximately 20 minutes to complete. If you
are willing to participate in the study, please read and Sign the following statement.

1.

I,

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

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

I understand that participation in this study is voluntary.

I understand that I can withdraw from the study at any time after originally
ageeing to participate, and that withdrawal from the study will not affect the
regular health care that I receive.

I understand that the results of the study will be treated in strict confidence and,
should they be published, my name will remain anonymous. I understand that,
within these restrictions, results of the study will be made available upon request.

I understand that no immediate benefits will result from taking part in this study,

but am aware that my responses may add to the understanding of health care
professionals.

, state that I understand what is required of me

 

as a participant and agee to take part in this study.

Signed

Date

 

56

Appendix D

INSTRUMENT
DEMANDS OF ILLNESS INVENTORY

Below is a list of events and thoughts that some individuals with cancer experience when
facing a health problem like cancer. Please read each item carefully and indicate the
extent to which you have experienced the following problem in relation to your cancer
or treatment «@thth three month_s.

0: NOT AT ALL
1: A LITTLE
2: MODERATELY
At times, some of my health care 3: QUITE A BIT
providers have: 4: EXTREMELY
1. been insensitive to my preference for treatment. 0 1 2 3 4 _
64
2. acted as if my opinions were unimportant. 0 1 2 3 4 _
65
3. made decisions without my best interests in mind. 0 1 2 3 4 _
66
4. not told me the truth about Changes in my health. 0 1 2 3 4 _
67
5. not shown concern for me as a person. 0 1 2 3 4 _
68
6. not thoroughly explained my health status to me. 0 1 2 3 4 _
69
As I've experienced my illness situation, I've:
7. wanted more facts about the treatments. 0 1 2 3 4 _
70
8. had questions that I wanted to ask but just couldn't 0 1 2 3 4 _
71
9. felt rushed to make a hasty treatment decision 0 1 2 3 4 _
72
10. wanted to be more assertive about the direction
my treatment should take. 0 1 2 3 4 __
73
11. wanted to be told the reason why, when asked to do
something for treatment. 0 1 2 3 4 __
74

57

12. realized I was initially unclear about the treatment
I would receive.

13. been dissatisfied with the progess of my treatment.
14. been dissatisfied with my medical care.
15. felt my illness was incorrectly managed.

16. worried my illness may be incorrectly managed in
the future.

58

AppendixE

U.C.fiHJS. Appmal

MICHIGAN STATE

UNIVERSITY

August 23. I993

TO: Dana Berry-Richardson
2549 Cinnamon Ridge
Howell. MI 48843

RE: [RE 1: 93-364
TITLE: INFORMATION NEEDS, PARTICIPATION PREFERENCES AND
SATISFACTION WITH HEALTH CARE RELATIONSHIPS: HOW THEY
CHANGE OVER THE COURSE OF ILLNESS
REVISION REQUESTED: NIA
CATEGORY: l-E
APPROVAL DATE: August 23. I993

The University Commtttee on Reaearch Involving Human SubIects' (UCRIHS) review of this project
Iscornplete. lampleaaed toadviaethatthen'ghtsand welfare ofthehunnn subjectsappeartobe
adequately protected and methods to obtain Informed consent are appropriate. Therefore. the
UCRIHS approved this project including any revision listed above.

Renewal: UCRIHS approval is valid for one alendar y-r. beginning with the approval
date shown above. Investigators planning to continue a project beyond one year
must use the enclosed form to seek updated certification. There Is a matmum of
four such expedited renewals possible. lnvesugators wishing to continue a project
beyond that ttrrne need to aubmrt It again for complete review.

Revisiom: UCRIHS must review any changes In procedures involving human subjects, prior
to Initiation of the change. If this is done at the time of renewal. please use the
enclosed form. To revise an approved protocol at any other time during the yar.
send your written request to the UCRIHS Chair. requesting revised approval and
referencing the project‘s IRB # and title. Include in your request a description of
the change and any revised instruments. consent form or advertisements dnat are
applicable. the year. please outline the proposed revisions in a letter to the

 

OFFICE OF Committee.
RESEARCH
AND Problerns/
GRADUATE Changes: Should either of the followrng anse dunng the course of the work. investigators
STUDIES must notify UCRIHS promptly: (1) problems (unexpected side effects, complaints.
Univ-W man. as etc) involving human subjects or (2) changes In the research environmImt or new
Research Involving Inforrnatton Indicating greater risk to the human subjects than existed who the
WW protocol was previously reviewed and approved.
(UCRlIISI
Mentors StaIeUMOSItv If we can he of any future help. please do not hesntate to contact us at (517) 355-2l800r FAX (517)
225 Mmtntsuatton Budding 336- I 171 .
East tarmac MICflIqan
4882“” Sincerely,

UCRIHS ChaIr

5153552180
FAX 517/335-I17I . g > a U .
0.; E. Wright. Ph.D. W
59

DEW:pjm

HST OF REFERENCES

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