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PREFERENCES OF PATIENTS UNDERCOING ANCtOCRAM FOR PARTICIPATION IN TREATMENT DECISIONS: COPtNC SWLE AND

THE PROBLEM SOLVINC-OECISION MAKINC SCALE

Nancy Kraetschrner

A thesis submitted in conformity with the requirements for the degree of Master's of Science

Craduate Department of Cornmunity Health University of Toronto

(c) Nancy Kraetschmer 1994

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TABLE OF CONTENTS

Tables and Figures

Abstract

Executive Summary

Acknowledgements

CHAPTER 1: LITERATURE REVIEW

Introduction

Patient Participation In Treatment Choice The Roles of Physician and Patient Dimensions of Participation Preference for Information and Involvement Problem Solving and Decision Making Individual Variations in Preferences to Participate

Coping Style Coping Measure: Repression-Sensitization

CHAPTER II - METHODOLOCY

Study Population Ethical Review Sam pling Procedure Response Rate Questionnaire Content Scales Used Reliability and Validity Coding Data Quality Data Management Statistics Employed

v

X

xi

xvi i

CHAPTER III: SCALE DEVELOPMENT

Factor Analysis Reliability Analysis

CHAPTER IV: CHARA-ERISTICS OF PATIENT SAMPLE

CHAPTER V: PARTICIPATION IN TREATMENT CHOICE

Hypothesis 1: Information Hypothesis II: Problem Solving Hypothesis III: Decision Making Hypothesis IV: Preference for Control

CHAPTER VI: COPINC STYLE

Hypothesis V: Coping Style 1 1 1 Hypothesis VI Coping Style/Problem Solving-Decision-Making 1 1 7

CHAPTER VII: SUMMARY AND CONCLUSIONS

Discussion Limitations Directions for Future Research Conclusions

APPENDIX A

Health Care Decisions Survey: Patient Version Health Care Decisions Survey: Nursing Student Version Health Opinion Survey (Krantz 1980) Repression-Sensitization Scale (Weinberger et al. 1 979) Autonomy Preference index (Ende et al. 1 989)

APPENDIX B Statistical Analysis

Factor Anafysis Results Coping Style Results

BIBLIOGRAPHY

TABLES

Tab

Tab

Table 3.3

Table 3.4

Table 3.5

Table 3.6

Table 3.7

Table 3.8

Table 3.9

Table 4.1

Table 4.2

Table 4.3

Table 4.4

Table 4.5

Table 4.6

Table 4.7

Table 5.1

Table 5.2

Mean Scores for Patient Population

Initiai Principle Components Matrix, Varimax Rotation, for Morbidity Vignette

Initial Principle Components Matrix, Varimax Rotation, for Mortality Vignette

Initial Principle Components Matrix, Varimax Rotation, for Quality o f Life Vignette

Varimax Rotation, Two Factor Forced, for Morbidity, Mortality, and Quality of Life Vignettes

Cronbach's Coefficient Alpha (Patient Population)

Item Anaiysis

Demographic Characteristics: Nursing Sample

Test-retest Correlations: Nursing Sampfe

Age of Respondents

Marital Status of Respondents

Respondent's Level of Education

Respondent's Employment Status

Characteristics of Patient Sample

Attitudes Toward Medical Care

Satisfaction with Cardiologist

HOS Information Preference by Age Croup

Morbidity Vignette: Problem Solving Questions

Table 5.3

Table 5.4

Table 5.5

Table 5.6

Table 5.7

Table 5.8

Table 5.9

Table 5.10

Table 5.1 1

Table 5.12

Table 5.1 3

Table 5.14

Table 5.1 5

Table 5.16

Table 5.17

Table 5.18

Morbidity Vignette: Proportion o f Scores in each Control Category (Problem Solving Questions)

Mortality Vignette: Problern Solving Questions

Monality Vignette: Proportion o f Scores in each Control Category (Problem Solving Questions)

Quality o f Life Vignette: Problem Solving Questions

Quality o f Life Vignette: Proportion o f Scores in each Control Category (Problem Solving Questions)

Morbidity Vignette: Decision Making Questions

Morbidity Vignette: Proportion o f Scores in each Control Category (Decision Making Questions)

Mortality Vignette: Decision Making Questions

Mortality Vignette: Proportion o f Scores in each Control Category (Decision Making Questions)

Quaiity o f Life Vignette: Decision Making Questions

Quality o f Life Vignette: Proportion o f Scores in each Control Category (Decision Making Questions)

Mortality Vignette (Diagnosis): Control Category by Age Croup

Mortality Vignette (Treatment Options): Control Categow by Age Croup

Mortality Vignette (Risks/Benefits): Controi Category by Age Croup

Mortality Vignette (Probabilities): Control Category by Age Croup

Mortality Vignette (Utilities): Control Category by Age Croup

Table 5 - 1 9 Mortality Vignette (What is Done): Control Category by Age Croup

Table 5.20 Cornparisons Across Three Vignettes

Table 6.1 Coping Categories

Table 6.2 Summary of Analysis of Variance between Krantz information Scale and Coping Croups

Table 6.3 HOS Information Preference by Coping Style

vii

FIGURES

Figure 5.1

Figure 5.2

Figure 5.3

Figure 5.4

Figure 5.5

Figure 5.6

Figure 5.7

Figure 5.8

Figure 5.9

Figure 5.1 0

Figure 5.1 1

Figure 5.1 2

Figure 5.1 3

Figure 5.1 4

Figure 5.1 5

Figure 5.1 6

Figure 5.1 7

Figure 5.1 8

Figure 5.1 9

Figure 5.20

Figure 6.1

HOS Information Preference Subscale

HOS Information Preference by Age Croup

Morbidity Vignette: Diagnosis Question

Morbidity Vignette: Treatment Options Question

Morbidity Vignette: Risks/Benefits Question

Morbidity Vignette: Probabilities Question

Mortality Vignette: Diagnosis Question

Mortality Vignette: Treatment Options Question

Mortality Vignette: Risks/Benefits Question

Mortality Vignette: Probabilities Question

Quality of Life Vignette: Diagnosis Question

Quality of Life Vignette: Treatment Options Question

Quality o f Life Vignette: Risks/Benefits Question

Quality of Life Vignette: Probabilities Question

Morbidity Vignette: Utilities Question

Morbidity Vignette: What is Done Question

Mortality Vignette: Utilities Question

Mortality Vignette: What is Done Question

Quality o f Life Vignette: Utilities Question

Quality of Life Vignette: What is Done Question

HOS Information Preference by Coping Style

Figure 6.2

Figure 6.3

Figure 6.4

Figure 6.5

Figure 6.6

Figure 6.7

Figure 6.8

Figure 6.9

Figure 6.1 0

Figure 6.1 1

Figure 6.1 2

Figure 6.1 3

Figure 6.1 4

Figure 6.1 5

Figure 6.1 6

Figure 6.1 7

Figure 6.1 8

Figure 6.1 9

Morbidity Vignette: Diagnosis by Coping Style

Mortality Vignette: Diagnosis by Coping Style

Quality of Life Vignette: Diagnosis by Coping Style

Morbidity Vignette: Treatment Options by Coping Style

Mortality Vignette: Treatment Options by Coping Style

Quality of Life Vignette: Treatrnent Options by Coping Style

Morbidity Vignette: Risks/Benefits by Coping Style

Mortality Vignette: Risks/Benefits by Coping Style

Quality of Life Vignette: Risks/Benefits by Coping Style

Morbidity Vignette: Probabilities by Coping Style

Mortality Vignette: Probabilities by Coping Style

Quality of Life Vignette: Probabilities by Coping Style

Morbidity Vignette: Utilities by Coping Style

Mortality Vignette: Utilities by Coping Style

Quality of Life Vignette: Utilities by Coping Style

Morbidity Vignette: What i s Done by Coping Style

Mortality Vignette: What is Done by Coping Style

Quality of Life Vignette: What is Done by Coping Style

Kraetschmer, Nancy. (c) 1994

PREFERENCES OF PATIENTS UNDERGOING ANGIOGRAM FOR PARTICIPATION

iN TREATMENT DECISIONS: COPING STYLE AND THE PROBLEM

SOLWG-DECISION MAKING SCALE

A thesis submitted in conformity with the requirements for the degree of Master's of Science

Graduate Department of Community Health University of Toronto

Although current ideology suggests patients should be active participants in decision-making

about their care, the literature suggests patients wish to be informed, but not involved. We

studied preferences of 300 cardiac patients for information and involvement, and the influence

of their coping style. We developed a reliable instrument based on the Deber-Baumann

(1 989) hypothesis that choice can be subdivided into "problem-solving" (one right answer)

and "decision-making" (preferences for outcomes matter) tasks. Our key findings were that

most patients:

- want to be infonned;

- do not want to be involved in problem-solving;

- want to be involved in decision-making;

- are more inclineci to hand control over to physicians in situations involving risk of

mortality than those invoiving morbidity or quality of life.

- Coping style was correlated with information desired and with patient preferences for

some (but not all) decision-making tasks, but not with preferences for problem-solving tasks.

X

EXECUTWE SUM MARY

Although current ideology suggests that patients should be active

participants in decision making about their own care, the literature has

suggested that patients wish to be informed, but not involved. Several

studies have docurnented patients' desire for information among a variety

of patient populations (Blanchard et al. 1988; Cassileth et al. 1980; Faden

et al. 1981 ; Strull et al. 1984) and have found that most patients reported

a strong preference for information and detailed disclosure. However, the

literature was less clear about the extent to which patients want to be

active participants in decision making about their own care (Cassileth et al.

1 980; Faden et al. 1 981 ; Haug and Lavin 1 981 ; Harris poll cited by Ende et

al. 1989), with many concluding patients wished to be informed but not

involved.

The purpose of this study is largely exploratory in intent. This study

exarnined patient preferences for involvement in treatment decision

making and desire for information. We also examined the influence o f

patient coping style on preferences for information and decision making.

The conceptual framework for this study was based on Deber and

Baumann's (1 989) theory o f patient participation which postulates that

previous studies have made insumcient recognition o f two distinct

elements of choice behaviour - problem solving (PS, identifying the one

right answer) and decision making (DM, selecting the most desired bundle

of outcornes). We have hypothesized that patients want their doctor to do

the problem solving, but that many want to be involved in decision

making. The coping style theory was based on previous research by

Weinbeger et al. (1 979) and Shaw et al. (1 985,1986) that suggests a

patient's coping style is correlated with a desire for information.

We approached 464 patients at the Cardiovascular lnvestigative Unit of a

Toronto teaching hospital. Of those. 41 6 (8996) were eligible for the study,

41 (9%) were excluded and 7 (196) refused to participate. Three hundred

(72%) responses were received.

For the purpose o f this study, we devised a new scale entitled "The

Problem Solving-Decision Making Scale" (PSDM). Three vignettes were

used: The morbidityvignette read: "Suppose you often experience a

burning sensation when you go to the bathroom. You usually have to

push to begin t o urinate and sometimes dribbling occurs after urination";

The mortalityvignette read: "Suppose you had mild chest pain for three

days and decided that you should visit your doctor about this". The quality

of life vignette read: "Suppose you and your partner have been trying for

pregnancy, but have been unsuccessful for more than a year". Responses

were elicited for 6 statements, written to encompass the domain of

preferences for role in problem solving and decision making situations in

medical treatment. Four items were deemed problem solving tasks: (a) Who

should determine (diagnose) what the likely causes of your symptoms are?

(b) Who should determine what the treatment options are? (c) Who should

de termine what the risks and benefits for each treatment option are?,

(d) Who should determine how likely each of these risks and benefits are to

happen? Two items were deemed decision making tasks:(e) Given the risks

and benefits of these possible treatments, who should decide how acceptable

those risks and benefits are for you?, and (O Given al1 the information about

risks and benefits of the possible treatments, who should decide which

treatment option should be selected? The response categories were similar

to that used by Ende (1 989) in his Autonomy Preference Index. The five

xii

response categories were: "1 =the doctor alone"; "2=mostly the doctorl*;

"3=both equally"; "4=mostly me"; and "5=rne alone".

To determine content validity of the instrument, approximately 10 people

including healthy people, physicians, academics and research

methodologist were asked to judge the scope and design of the

instrument. All respondents judged the format and content of the scale to

be satisfactory.

Two methods were employed for scale validation: factor analysis and

reliability testing. Factor analysis produced two factors: problem solving

and decision making. The variance extracted by the first factor was 37.8

per cent and 17.5 per cent for the second factor; the total extracted

variance for the two factors was 55.3 per cent. The full scale had reliability

(Cronbach's alpha) ranging from 0.71 to 0.90 for one vignette to three

vignettes, respectively.

A test-retest reliability study was then conducted with a sample of nursing

students; 50 completed the pretest, 41 the retest; 22 pairs could be

matched. The test-retest reliability score for each subscale was calculated

using Pearson product-moment correlations. Test-retest reliability for the

Problem Solving subscale was 0.46 and for the Decision Making subscale

was 0.68. To determine test-retest reliability we also used paired t-tests.

Test-retest reliability for the Problem Solving subscale

(t=-0.61 ,df=20,p=0.514), and for the Decision Making subscale

(t=0.31 ,df=21 ,p=0.76), indicated no significant differences over time.

Using this instrument, we found that patients overwhelmingly wished the

problem solving tasks to be performed by or shared with the doctor

(98.4% of the 12 PS score were between 1 and 3), but wanted to be

involved in decision making (78% o f the 6 DM scores were between 3

and 5 ) . Preference for handing over contrcl to the doctor was significantly

greater for the mortality vignette then for the morbidity or quality o f life

vignettes.

In addition t o O u r scale (PSDM), the instrument included questions on

preferred decision making role, desire for information, coping style, and

demographic and background material. We used the Ende et al. (1 989)

Autonomy Preference Index, the Krantz (1 980) Health Opinion Survey, and

the Weinberger (1 979) Sensitization-Repression Scale.

Our findings on these items confirmed that the patients we studied had a

moderate preference for information.

Coping style was measured using the Repression-Sensitization Scale

adopted by Weinberger et al. (1 979) which characterizes an individual's

response to anxiety provoking stimuli through desire for information.

Coping style was measured on a scale that combined the Taylor Manifest

Anxiety Scale (TMAS) and the Marlowe Crowne Social Desirability Scale

(MCSD). Coping was measured on a scale, wi th the TMAS and MCSD scores

split at the mean t o yield the four coping categories: 1) True Repressors

(low TMAS and high MCSD) characterized by information avoidance; 2) Low

Anxious (low TMAS and low MCSD) also referred to as effective copers who

are able to handle stress in an effective manner; 3) True Anxious (high

TMAS and low MCSD) also referred t o as sensitizers and characterized by

seeking out o f information; and 4) Repressive Anxious (high TMAS and

high MCSD) also referred t o as sensitizers.

We found a relationship between coping style and desire for information.

True repressors wanted a moderate amount o f information, low anxious

xiv

and true anxious individuals wanted a medium to high level of

information, and repressive anxious wanted a medium to low level of

information. Sirnilar results have been reported by Shaw et al. (1 985;

1 986) and Murphy et al. (1 989).

Our findings also indicate a significant relationship between coping style

and the Decision Making Subscale (Utilities question) across al1 three

vignettes. For the Morbidity Vignette (chi-square=27, 1 Zdf, p=0.006);

Mortality Vignette (chi-square= 32.868, 1 Zdf, p-0.001); and Quality of Life

Vignette (chi-square=2 5.1 95, 1 Zdf, p=0.014).

We also found that age, sex, and coping style did not explain variation for

preference in retaining control over problem solving or relinquishing

control to the physician.

These findings suggest two major roles for clinicians - assisting the patient

in structuring the decision (e.g., the problem solving), and supporting

them in making often difficult decisions. Experts cannot determine what

value will be placed on a particular outcorne. How unpleasant it is to live

with pain, or to be forced to limit one's activities, is inherently a personal

value judgement. Our results suggest that many patients agree that they

should play a major role in decision making with the pannership and

support of providers. ldentifying the alternatives does not always tell you

which one should be selected.

In conclusion, we have developed an instrument to measure patient

preferences in treatment choice - problern solving and decision making - and shown that:

1) most patients want to be informed;

2 ) most patients do not want to be involved in problem solving;

3) most patients want to be involved in decision making;

4) patients are more inclined to hand control over to physicians in

situations involving risk of mortality than those involving morbidity or

quality of life.

We have also found that:

5) coping style was correlated with the arnount of information patients

desired such that i) sensitizers wanted a high level of information, whereas

ii) repressors wanted a low level of information; and

6) coping style was correlated with patient preferences in treatment choice

for the Utility question of the Decision Making Subscale, but was not

correlated with patient preferences in treatment choice for the Problem

Solving Subscale and the What is Done question of the Decision Making

Su bscale.

ACKNOWLEDCEMENTS

I would like to express my sincere thanks to Dr. Raisa Deber, chair of my

thesis cornmittee, for her support, direction, and encouragement throughout

this thesis projea. I would also like t o thank the members of my committee,

Drs. Jane lrvine and Allan Detsky, who provided invaluable input throughout

this project.

Dr. Gladstone, Director of the Cardiovascular Investigation Unit (CIU), al1 the

cardiologists who permitted me to approach and recruit their patients into

the study, and to the staff of the CIU who were always friendly and helpful.

I would also Iike to thank Andrea Baumann and Dr. John Trachtenberg for

their contribution t o this research project. Thanks to Michael Murray,

and Sandra Gardner for their willingness t o share their statistical expertise.

The study could have not been done without the great cooperation we

received from the 300 people who completed the questionnaire. and the

nursing students.

Thanks to the Social Science Research Council of Canada, whose financial

support o f a grant to Dr. Deber, 410-92-0725 "Medical Decision Making: Who

and How? Patient Empowerment and Decision Rules", helped to make this

study possible.

I am grateful to my parents for the love and support they have given me

throughout my lifetime. I would like t o express thanks to my sister, Brenda

and brother, Terry for their encouragement and support o f my work. As well,

special thanks to Mark Shorey, for his patience and understanding throughout

my thesis work. I would also like to thank Ruth Hall and al1 the other friends

and colleagues who offered support.

CHAPTER I

INTRODUCTION

What role do patients want to play in making decisions about their own

treatment? The current ideology suggests that patients should be active

participants in decision making about their own care; the literature has

suggested that patients wish to be informed, but not involved. Can those

views be reconciled? We thought it might be possible to take this a step

further and analyze whether underlying 'coping style' might predict a

patient's desire for information and preference for participation in decision

making.

The purpose of this study was to examine the roles patients wish to play in

making decisions about their own treatment. The objectives of the study

were:

(1) to assess the role patients wish to play in making treatrnent choices about their own care and the amount of information patients want; and

(2) to determine if coping style (sensitization-repression) influences the patient's desire for information or role in problem solving or decision making.

The study was largely exploratory in intent. It was composed of two parts:

choice and coping style. The choice component was based on a theory by

Deber and Baumann (1989) that there are two elements of clinical

reasoning: problem solving and decision making. According to Baumann

and Deber problem solving "refers to the search for the single 'correct'

solution to a problem. and decision making refers to a situation in which a

choice, often requiring trade-offs, must be made from a number of

possible alternatives" (Baumann and Deber, 1989). Baumann and Deber

(1 989) postulated that most patients want their physician to do the

problem-solving, but that many want t o be actively involved in the

decision making component of choice behaviour. The coping style theory

was based on previous research by Weinbeger et al. (1 979) and Shaw et al.

(1 985,l 986) that suggests a patient's coping style i s correlated with a

desire for information. Since Deber and Baumann's theory of choice

behaviour had never been empirically tested, thus providing no research

to suggest what might be expected, a detailed program of exploratory

analysis was done. For the purpose of this study, we devised a new scale

entitle "The Problem Solving-Decision Making Scale (PSDM)".

The questions to be studied were determined by extensive research of the

literature on patient decision-making and coping style. Considerable

research has been done on the role patients want to play in making

choices about their treatment, but no work has been done testing Deber

and Baumann's (1 992) theory of patient participation. Furthermore, very

l i t t le research has been done on coping style as it relates to a patient's

desire to be provided with information and desire for involvement in

treatment selection.

The following hypotheses were tested:

Hypothesis I

Most patients want to be informed.

Hypothesis II

Most patients do not want to be involved in problem solving.

Hypothesis III

Most patients want to be involved in decision making.

Hypothesis IV

Patients will be more inclined to hand control over to physicians in situations involving risk of mortality than those involving morbidity or quality of life.

Hypothesis V

Coping style will be correlated with the amount of information patients desire:

i) sensitizers will want a high level of information; and ii) repressors will want a low level of information.

Hypothesis VI

Coping style will be correlated with patient preference in treatment choice:

i) sensitizers will want to be involved in treatment choice to a greater degree than repressors.

Two populations were studied - patients undergoing angiogram and

nursing students. The first chapter provides a review of the literature on

medical choice and coping style. The second chapter describes how the

study was carried out. dealing with methodology, the research subjects.

questionnaire construction, coding, testing the quality of the data and

analysis of the data. Chapter three provides results on scale development.

Chapter four presents data on characteristics of the patient sample.

Chapter five describes the results on participation in treatment choice.

Chapter six describes the results on coping style. The final chapter

summarizes and interprets the results and suggests future research.

Medical decision making is a complex issue and the role o f patient

involvement in making medical decisions has received considerable

attention over the past years. The issues o f concern are: How much do

patients wish t o be informed about their diagnosis, possible treatments,

and likely outcornes? To what extent do patients wish to be involved in

their therapy, including treatment decisions?

Although the current ideology suggests that patients should be active

participants in decision making about their own care, the literature

suggests that patients wish to be informed, but not involved (Strull et al.

1984; Ende e t al. 1989). For example, Deber and Baumann have suggested

that much o f the research done in the area of patient participation has

made insufficient recognition o f the difference between two elements o f

choice, which they term problern solving and decision making. Problern

solving refers t o the search for the single correct solution; thus, it requires

expertise. Decision making refers t o choices that require trade-offs among

possible alternatives; thus, values and preferences must be considered.

This chapter wi l l f irst examine the literature on patient participation i n

medical decision rnaking in respect t o the problem solving and decision

making distinction. It draws upon a review of the literature done by Deber,

Pendleton, and Bouchard, for the Royal Commission on New Reproductive

Technologies (forthcoming). A secondary literature review was undertaken

to develop an understanding o f coping style and i t s relation to preference

for information and role in decision making.

THE ROLES Of PHYSICIAN and PATIENT

Historically, medicine has been dominated by the paternalistic model

which places the physician as the expert for whom the patient seeks help.

This was characterized by "professional autonomy on the part of the

physician with a corresponding attitude of benign paternalisrn toward the

patient" (Kaufman 1983, 1991). This ideology was further supported

"because medical knowledge is so complicated, the information possessed

by the physician as t o the consequences and possibilities of treatrnent i s

necessarily very much greater than that of the patient" (Arrow 1965).

Thus, l i t t le emphasis was placed on encouraging active participation from

patients. As noted by Katz (1 984) "physicians have shown a keen

sensitivity to patients' decision making limitations but considerable

insensitivity to their capacities to decide" (Katz 1984.87). In theory, this

model took into account patient preferences and values, but left them a

minimal role in decision making.

As we move further into the age o f consumerism the traditional medical

ideology is being undermined. The consurneristic model signifies a

change in the public's attitude toward health care professionals and health

care delivery. In this model, the doctor wil l still be seen as the expert, but

the patient as the consumer should be able to "buy" the information and

take as much control in the treatment decision as is desired. Thus, the

emergence o f consumerism has lead to a growing interest in the concepts

of autonomy and beneficence. In turn, this has lead to the debate over

whether patient choice is more important than what is in the best interest

o f the patient. There has also been much attention paid to the principle o f

informed consent which is rooted in legal, ethical, social, and moral

concerns.

Much attention has been paid to the question of how much a physician

should tell patients about their diagnosis and prognoses. There are both

ethical and practical issues involved in decision-making. Recognition of the

extent to which patients' mental attitudes and hope can influence

outcornes led many physicians to argue that it was inhumane and perhaps

unethical to tell a patient that there was no longer hope for cure. This

view saw the ethical principle of beneficence as dominating; patient

information and choices would be manipulated "for their own good."

Others argued for telling patients the t ru th under al1 circumstances, both

on pragmatic grounds (a deceived patient is less likely to be compliant)

and out of ethical repugnance o f violating a patient's autonomy (e.g. Katz

1984). Medical ethicists argued that autonomy is more important than

beneficence; thus, patients should be informed whether they want the

knowledge o r not (Sider and Clements 1985). The forgoing review

suggests that patient participation is probably, on balance, a "good thing".

Moreover, there is also evidence that, given a choice, many people want

to be involved in decision making. For example, a desire for increased

information and participation in decision making was expressed by

individuals testifying t o the Royal Commission on New Reproductive

Technologies (What We Heard-Issues and Questions Raised During the

Public Hearings). Several studies have documented a patient's desire for

information (Cassileth 1980; Ende et al. 1989; Strull et al. 1984).

Altering the balance, between beneficence and autonomy produces

different answers. Katz noted that physicians admit among themselves

that medicine is an inexact science and uncertainties exist (Katz 1984a).

Physician uncertainty undermines the very foundations that the medical

profession is bu i l t on: esoteric knowledge which allows for power and

control over decision making. However, it has been argued that

"a physician's ability to preserve his own power over the patient in the

doctor-patient relationship depends largely on his ability to control the

patient's uncertainty .... The less uncertain the patient becomes about the

nature of his illness and the effects of treatment, the less willing he may

be to relinquish decision-making power to the physician" (Katz 1984a, 42).

Katz argures that this reluctance to acknowledge uncertainty is harmful to

the fostering of a trusting physician-patient relationship and undermines

the capability of genuine, shared decision making.

The strongest argument for patient involvement may be the discovery

th roug h decision-analysis techniques that optimal treatrnent in many

clinical situations is uncertain. McNeil, Weichselbaum, and Pauker (1 978)

investigated the importance of patient attitudes toward survival, involving

the choice between surgical and medical therapy. Under certain

circumstances, the value assigned by the decision maker to particular

outcornes determines the optimal treatment (Barry et al. 1988;

Fowler et al. 1988; Pauker and McNeil 1981 ; and Wennberg et al. 1988).

Optimal choice of therapy would thus require knowing those values which

in turn requires knowing the patient's wishes. From a procedural

viewpoint, however, acceptance of this normative model of decision

making requires either that the clinician become an excellent judge of

patient wishes or that patients be allowed to participate. Otherwise,

outcomes are likely to be suboptimal, even judged from a purely technical

stand point. "Some decisions are subjective, based on moral principles or

preferences rather than on scientific grounds" (Abrams, 1993). For

example, studies have found that patient's wishes had an impact on

treatment decisions; decisions were based on the social, traditional and

religious reasons and largely ignored the medical information

(Christensen-Szalanski et al. 1987, McClain 1987). Therefore, health care

providers need t o recognize that treatment decisions will ultimately

involve both medical information as well as patients' wishes. As stated by

Ende e t al. (1 989) " the physician-patient relationship should be based not

on preordained policies, but rather on an accommodation to each patient's

preferences and needs" (Ende et al. 1989. 28).

Research studies have also shown that participation leads to better

outcomes and more satisfaction among patients (Kaplan 1991 ; Schulman

1979; Brody et al. 1989). Kaplan (1 991) postulates that patients who

perceive they have control or choice over their health status have

"enhanced or protected immune functioning" indirectly resulting in better

outcomes. Other studies have also found that patients who believe they

have control over their health status have better outcomes than those who

do not perceive their control (Schulman 1979; Brody 1989). Patients who

are active participants are "apt to accept, believe in, understand and carry

out treatment recommendations" (Schulman 1979, 278). Overall, it

appears that perceived control affects health outcomes. lnvolving

patients in treatment decision making may enhance their sense of control

and ultimately facilitate better health outcomes.

In general, the literature indicates that the relationship between patient

participation and patient satisfaction is ambiguous. t t i s important to note

that patient satisfaction is not necessarily related to a good outcorne.

Instead, evidence suggests that patient satisfaction may be more

influenced by interpersonal factors in the physician-patient relationship

(Ben-Sira 1976; Woolley et al. 1978; and Speedling and Rose 1985). In a

study examining the relationship between physician-patient

communication and patient satisfaction, Wartman et al. (1 983) found that

compliance was negatively correlated with satisfaction with

communication during visit and that patient satisfaction with physician-

patient communications does not always reflect effective communication

about drug regimen.

Research studies have found that increased participation does not always

engender greater happiness. Examples included Roter's (1 977) finding

that encouraging patients to ask their physicians more questions resulted

in lower satisfaction, or Greenfield's (1 985) finding that participating ulcer

patients were no more satisfied than the controls- These results could

have arisen if clinicians failed t o respond satisfactorily to their patients'

efforts; however, they could also refiect a distinction noted by Ware et al.

(1 976) between the "art of care" and the "technical aspect of care." Most

patient-satisfaction surveys suggested that "from the patient's perspective,

the technical component is taken for granted, leaving the non-technical

open to scrutiny and evaluation" (Speedling and Rose 1985). In a pilot test

o f their Perceived Involvement in Care Scale, Lerman et al. (1 990) found

that, although there was a weak bu t significant relationship between self-

reponed patient involvement with decision making and satisfaction with

their physician's technical cornpetence, there was no correlation with the

art of care. Thus, participation probably has an overafl positive effect but

does not guarantee a happy, satisfied patient.

A Swedish study measuring patient satisfaction and perceived involvement

in the decision making process found that the majority o f patients were

satisfied with their perceived involvement in the decision making process,

being involved in the decision-making as much as desired (Larson et al.

1989).

Another argument for patient participation stems for studies that have

shown that doctors are not good predictors o f what their patients want

(Strull e t al. 1984; England 1992).

Although legal and ethical thinking now in effect requires participation

(e.g., "informed consent") there are practical barriers. Katz (1 984)

postulates that there are three significant barriers t o the implementation

of patient participation in medical decision making: These are:

(1) Authority. There is a debate between the traditional view that patients

benefit the most if they follow doctors orders and the notion o f informed

consent which argues that physician and patient share in the decision-

making; (2) Autonomy. Despite the implication that both physician and

patient have the ability t o make decisions, it must be recognized that

illness can impair a patient's competency for decision making, rendering

patient autonorny less practical; and (3) Uncertainty. In many instances

the medical knowledge needed for confident decision making is simply

unavailable.

The current medical environment tends not t o be conducive t o patient

involvement. An environment rnust be established that enhances patients'

independence by facilitating their involvement in making decisions, by

ascertaining the patients' goals and values, and by educating the patients

about the risks and benefits o f alternative treatments (Brody 1980).

Another potential difficulty is that "physicians and patients rnay be bound

by potent unconscious factors, such that patients rnay need to be taken

care of by powerful paternal or materna1 figures" (Quill 1983.223). Some

patients rnay adhere to what is known as "the sick role" , temporarily

handing control for their health over to the doctor (Katz 1984). Yet others

rnay be too i l 1 t o act as decision makers, having to rely on their physician

to be the decision maker.

Another set of obstacles rnay result from the reality o f busy clinical

practice; that is, physicians rarely have time to provide information (Faden

1991 ; Beisecker and Beisecker 1990), and the patient rnay be reluctant to

"bother the doctor".

DIMENSIONS OF PARTICIPATION

The literature seems to highlight three dimensions o f participation. The

much-disputed issue o f paternalism have engendered the developrnent o f

alternatives to the paternalistic model which supports the shift frorn

physician control over decision making toward more patient control

(Veatch 1972; Brody 1989; Quill 1983). In the 'priestly model', the

physician was seen both as the technician and decision maker, deciding

what was best for the patient. The 'engineering model' developed by

Veatch (1 972) saw the physician as technician and the patient as sole

decision maker. Veatch's 'collegial model' recognized the imbalance o f

knowledge and viewed the patient and physician as equal partners.

ln the 'shared contractual rnodel' (Brody 1989; Quill 1983) the physician

contributes the "expertise in diagnosis and management", while the

patient contributes "personal moral values or lifestyle preferences" about

which they "could be expected t o know more than the physician couldw

(Brody 1989,70). Thus, choosing a best treatment requires the

contributions of both the physician and patient (Brody 1980; Lerman et al.

1990; Quill 1983; and Weiss 1986; President's Commission for the Study o f

Ethical Problems in Medicine and Biomedical and Behaviour Research

1982).

Various approaches t o enhance active patient participation have been

studied and ernpirically tested. Studies have used the "coaching" approach

to empower patients (Creenfield e t al. 1985, 1988; Roter 1977). With this

method patients are trained to read their medical records, ask questions.

negotiate medical decisions, and are provided with information about the

cause, complications, and treatment. Some studies have found this

method to be effective in helping patients obtain information from

physicians (Creenfield et al. (1 985, 1986) whereas others have failed t o

find these results. Roter (1 977) studied poor. black women and found that

"coached" patients asked more questions; however, their interactions with

the physician appeared to be characterized by more anger and anxiety,

and they were less satisfied with the visit than the uncoached consults.

Other studies have shown that patient participation can be increased

through improving a patient's comprehension (Robinson and Whitefield

1985). The results suggest that having health care providers state their

willingness to answer questions may be insufficient to elicit genuine

participation. When patients were asked specifically "to imagine carrying

out instructions, to notice any problems which might arise, and to raise

these with the doctor" (Robinson and Whitefield 1985) there were

significantly more questions and comments and fewer errors and

omissions in their accounts of the recommended treatment. Wateworth

and Luker (1 990) concluded that promoting individualized care is not

necessarily synonymous with active patient involvement.

PREFERENCES FOR INFORMATION and INVOLVEMENT

Studies have found that patients ovennrhelmingly want to be informed. As

an example of patients' desire for information, one study found that 98 per

cent of cancer patients indicated a desire to know about al1 possible side

effects of treatment (Cassileth, 1980).

Several studies have documented patients' desire for information among a

variety o f disease states and found that most patients have a strong

preference for information and detailed disclosure (Beisecker and Beisecker

1990; Blanchard et al. 1988; Cassileth 1980; Faden et al. 1981 ; Ende et al.

1989; Strull e t al. 1984; and Sutherland e t al. 1988).

Beisecker and Beisecker (1 990) investigated patient information-seeking

behaviour among 106 rehabilitation medical patients at an outpatient

clinic. Data collection included: 1 ) sociodemographic questionnaire

administered immediately before the doctor-patient interaction; 2) a tape

recording o f the entire interaction between patient and doctor(s); 3) a tape-

recorded interview with the principal investigator immediately following

the doctor-patient encounter; and 4) an opinion survey mailed to the

patient ten t o fourteen days after the appointment. To measure

information and participation the Desire for Medical Information and Locus

of Authority in Medical Decision Making Scale, developed by Beisecker and

Beisecker (1 988) were used. The Desire for Information Scale asked the

question "How important is it to you to be given information in the

following areas?" and used a five-point Likert-type Scale with l=not at al1

important t o 5=very important. The Locus o f Authority Scale asked the

question "Following are some areas i n which decisions are made in

medicine. Who do you think should make the decisions in each area?"

Respondents were given three categories t o choose from: doctor, patient.

or both doctor and patient.

The results revealed that patients ovenvhelmingly desired information

about a variety o f medical topics but wanted the doctor to be the sole

decision maker. Although patients wanted information, they showed little

indication for engaging in information-seeking behaviours. The

researchers suggest that patient disease might be a confounding factor

stating "chronic disease or disabilities partially explains their lack of

information seeking behaviour" (Beisecker and Beisecker 1990.26)-

As well, their findings suggested that situational variables are a strong

determinant o f information seeking communication behaviour than patient

attitudes and sociodemographic variables. Patient attitudes only become a

predicting factor in information-seeking behaviour when patient-physician

consultation time i s o f a certain length since "short interactions minimize

patient question asking and expression of patient attitudes" (Beisecker and

Beisecker 1 990,28).

There have been several empirical studies examining both preference for

information and participation in treatment decision making. One of the

first studies to look at the extent to which patients wished to be involved

in treatment decision making and preference for information was by

Cassileth et al. (1 980). The study population was 256 cancer patients.

They found that younger patients were more likely to adopt a participatory

approach then older patients. The data showed that 87 per cent in age

group 20-39, 62 per cent of those in age group 40-59 and 51 per cent of

those aged 60 and older preferred to participate in decisions about their

medical care and treatment. However, 96 per cent in age group

20-39, 79 per cent aged 40-59 and 80 per cent of those 60 years and over

indicated that they wanted to have alf information - good and bad.

Sirnilarily, in a study examining the extent to which patients desired to

participate in medical decision making, Strull et al (1 984) concluded that

patients wished to be informed but not be involved in decision making.

The study focused on three aspects of decision making: 1) amount of

discussion about therapy; 2) how decisions are usually made; and

3) preferences for roles in decision making. The questionnaire was

adrninistered to patients and their physician. For instance, they asked a

question such as the "clinician should make the decision using al1 that's

known about the rnedicines" (Strull et al. 1984). The researchers

concluded that patients desired information, but "that half of the patients

did not want to play any role in actual decision making".

Another study by Llewellyn-Thomas et al. (1 991) examined preferences for

participating in decision making used a modified version of the

questionnaire from Cassileth et al. (1980) and Strufl et al. (1 984). The

questionnaire was administered to cancer outpatients and analyzed

according to their attitudes towards clinical trial entry. Patients were

broken down into two groups: Agreers and Refusers. Responses on the

Decision Making Preference Questionnaire were collapsed to indicate two

styles of decision making: 1) physician- dominate (based on the questions

"The doctor should make the decisions using al1 that's known about the

treatment", 'The doctor should make the decisions but strongly consider

rny opinion"; and 2) patient participate (based on the questions "The

doctors and I should make the decisions together on an equal basis", 1

should make the decisions, but strongly consider the doctor's opinion", "1

should make the decisions using al1 1 know or learn about the treatments).

O f the 60 cancer patients. 28 fell into the physician-dominated category

whereas, 32 patients were in the patient participate category. It was noted

that patients who refused to enter into a clinical trial were not as willing to

relinquish their role in treatment decision rnaking (Llewellyn-Thomas,

1991, 39).

Similarily, Siminoff et al. (1 991) survey of 100 breast cancer patients about

their involvement in making decisions about adjuvant treatment. The

findings showed that 80 per cent of the patients relied on their physicians

to make the prirnary treatrnent decision; only 3 per cent of the patients

surveyed did not select any of the possible treatment options (Siminoff et

al. 1991).

Degner and Russel (1 988) also examined preferences for treatment

decision making among 60 cancer patients. They postulated that people

have ideal points along the psychological dimensions of keeping, sharing

or giving away control over decision making. A scale developed by the

researchers consisted of eight vignettes describing various levels of

control over treatment decisions. Using a card sort procedure, patients

were asked to rank the cards depicting the eight vignettes. Using this

scale, the researchers found that preferences for control over decision

making, fifty-nine of the sixty patients was consistent with this underlying

psychological dimension; and that most patients preferred shared control

over handing control over to a family member.

A study by Blanchard e t al. (1 988) of cancer patients examined preferences

for information and decision making. Patients preference for information

to be given was assessed using the categories: 1) minimal; 2) only if it is

good news; and 3) good or bad. Preference for participation was measured

using the categories 1 ) prefer doctor makes therapeutic decisions and

2 ) prefer to participate in decisions. The results indicated that 92 per cent

wanted al1 information, good or bad, to be given, but only 69 per cent

desired to participate in treatment decision rnaking. Of those who wanted

information, 24.9 per cent preferred the doctor make the decisions. The

investigators postulated that "these findings suggest that the preference

for information does not always rnean that the patient then wants to

participate in therapeutic decisions" (Blanchard et al. 1988, 1 143).

The relationship between patients' desire for information and their

preference for participation in decision making was also examined by

Sutherland et al. (1 989).

Approximately 77% reported that they had participated in decision making

to a desired extent. As in the Ende study, many patients actively sought

information, but a majority preferred the physician to be the primary

decision maker. The researchers concluded that "professionals, in an

attempt to encourage informed, autonomous decision rnaking, may

provide information which many patients may indeed desire to have"

(Sutherland et al. 1989, 263), but it must be remembered that patients s t i l l

may desire the physician to make the decision.

A questionnaire was developed by Ende et al. (1 989) t o distinguish

between elements o f patient autonomy: desire for information and desire

for participation. Patient desire for information and participation were

measured by the Autonomy Preference Index, consisting o f two scales: an

eight-item scale on information seeking and a fifteen-item scale on

decision rnaking. The "decisions" they asked about were questions such as

"whether a cardiologist should be consulted" if you discovered you were

having a heart attack.

They concluded that "patients prefer that decisions be made principally by

their physicians, not themselves, although they very rnuch want to be

informed". However, there was no correlation between patients' decision

making and information seeking preference.

Although the current ideology seerns t o suggest that patients should be

active participants in making decision about their own medical care,

indicating a move toward shared decision making (Katz 1 984; Childress

1983; Wennberg 1990; Brock 1990), a large body of research has

accumulated which appears to indicate that patients wish to be informed,

but s t i l l prefer their doctor to be the primary decision maker (Ende et al.

1989; Strull et al. 1984; Cassileth et a1.1980; Beisecker and Beisecker

1 991).

One explanation for the contradiction that exists between current ideology

and empirical evidence is that the research may not be accurate. Deber

and Baumann (1 989) have postulated that the literature has made

insufficient recognition between two elements of choice behaviour -

problem solving and decision making.

PROBLEM SOLVINC and DECISION MAKINC

According to Baumann and Deber problem solving "refers to the search for

the single 'correct' solution to a problem, and decision making refers to a

situation in which a choice, often requiring trade-offs, must be made from

a number of possible alternatives" (Deber and Baumann 1992, 140).

In problem solving we are presented with a search problem: how to

discover that correct answer most efficiently. Problem solving tasks thus

require both a knowledge base and a set of problem solving skills to

identify the possible alternatives and the probabilities of each likely

outcome, but have a Iimited role for patient involvement (Baumann and

Deber, 1989). The problem solving and decision making tasks are not

linear, but rather embedded within each other; they do not exist in

isolation, but rather they comprise a continuous process. In medicine the

process used in determining the correct diagnosis would illustrate problem

solving whereas, the process of selecting a treatment would be an example

of decision making (Deber and Baumann 1 989). For example, a

cardiologist's job would be to diagnose the symptoms, identify treatment

alternatives and determine the probability of each outcome. In contrast,

decision rnaking requires prior problem solving, but relies heavily upon

patient preferences. It does not rnatter whether an individual would prefer

that they do not have cardiac disease - the diagnosis is what it is.

However, identification of treatment options does not determine what

should be done; the only person who can decide whether he/she can live

with angina or risk surgery, is the person who has that condition. This

distinction would imply that the job of the health professional i s to

perform the problem solving, and to support the patient in making

subsequent decisions.

Studies suggesting patients do not wish to be decision makers have not

always noted this distinction. Strull et al. (1 984) failed to distinguish

between the problern solving and decision making components thus, the

lack of distinction has lead Strull et al. (1 984) to conclude "that half of the

patients did not want to play any role in actual decision-making". As well,

Ende et al41 989) concluded that "patients prefer that decisions be

made principally by their physicians, not thernselves, although they very

rnuch want to be informed", they do not distinguish between problem

solving and decision making. The "decisions" they asked about were

questions such as "whether a cardiologist should be consulted" if you

discovered you were having a heart attack, decisions for which patients

not surprisingly felt a need for expert input.

This distinction would imply that the job of the health professional is to

perform the problem solving, and to support the patient in making

subsequent decisions. The distinction is similar to that made by Kassirer

(1 983) when he wrote about "usurping patients' prerogatives." A similar

distinction was made by Arrow (1 973). This is supported by a Harris poll

cited by Ende et al (1 989) noting 72 percent of patients surveyed preferred

the option "The doctor discusses alternatives with the patient and the two

of them decide together how to proceed".

Based on this literature, we hypothesized that most patients will prefer to

have experts perform the problem solving tasks, but will wish to take a

more active role in decision making.

INDlVl DUAL VARIATIONS IN PREFERENCES TO PARTICIPATE

Several studies have identified factors that may contribute to whether or

not a patient wants information or wants to participate in decision making.

Some of these are: age, education. social class, and disease state (Cassileth

e t al. 1980; Strull et al. 1984; Brody 1980; Blanchard 1 988; Lidz 1983).

Studies have found that patients are dissatisfied with the information they

receive (Waitzkin and Stahl 1980). Matthews (1 983) suggested the

communication of information may be more problematic because of the

different frames of references about what information should be shared

and social distance between the physician and patient. To be understood,

information must be presented in a way appropriate to the patient.

Clearly, format, content, and timing of the material are important;

however, that is not the focus of this thesis.

Ende e t aL(l989) found that older patients have less desire than younger

patients to make decisions and to be informed. Younger patients tend to

adhere to the concept of shared participation whereas, older patients tend

to prefer the traditional non-participatory approach (Degner et al. 1 988;

Cassileth et al. 1980; Beisecker and Beisecker 1990; Blanchard 1990).

Pendleton et al. (1 984) in their study of poor low-income diabetics found

that they expressed little desire to actively involved in their health care or

seeking information about it as compared to college students who

indicated preferences for active involvement.

There appear to be differences in decision-making patterns between

chronically i l 1 verses acutely il1 patients. Patients with acute illness tend t o

adhere to what is known as "the sick role", temporarily handing complete

control over their body t o the doctor, whereas patients with chronic

diseases are less will ing to relinquish control over their bodies (Lidz

1983,542).

Beisecker and Beisecker (1 990) found that patient-physician consultation

time was an important factor in patient participation.

Another determination o f individual differences may be related t o a

dimension of coping style. This leads us to the literature review on coping

style. Civen that the fiterature in this area is quite extensive, only the

literature directly related to our measure has been reviewed.

COPINC STYLE

The concept of coping usually refers t o the ways individuals react to the

threatening (stressful) aspects of a situation. Coping is an important

concept for research in health. A review of the literature suggests that an

individuals coping style may have health-relevant consequences. More

specifically, studies have shown that coping style influences responses to

information. (Shipley e t al. 1979; Shaw e t al. 1985, 1986; Murphy e t al.

1989).

Cohen e t al. (1 987) have suggested five major coping strategies:

information-seeking, direct action, inhibition of action, intrapsychic

processes, and turning to others for support. The mode of coping that

this paper will focus on is that of information-seeking. We have chosen

information-seeking as it relates to the literature that States that patients

want to be informed.

The literature highlights two approaches to coping style which treats

coping as a personality characteristic as opposed to a process which

adheres to the theory that coping changes over time as a function of i t s

situational context (Averill and Opton 1988; Cohen and Lazarus 1973,

1979; Cohen 1987; Lazarus 1993). The primary focus of this literature

review will be on the style approach and the specific measure of

repression-sensitization.

Historically, coping theory and research treated coping as a dispositional

style. The majority of research on coping style employed measures which

were hierarchical and developmental in formation, such as the

undimensional trait measures which have been termed repression-

sensitization or avoidance-coping; the tendency to avoid or seek out

threatening information (Lazarus 1993). In Measurement of Coping,

Cohen (1 987) cites a nurnber of instruments developed to operationalize

the construct of repression-sensitization. For example, Byrne's (1 961)

Repression-Sensitization Scale; Epstein and Fenz's (1 967) modified

Repression-Sensitization Scale; the Rorschach index of Repressive Style

(Gardner, Holzman, Klein, Linton, and Spence 1959; Levine and Speivack

1964); and Weinberger, Schwartz and Davidson's (1 979) Repressive Style

Index. The construct of avoidance-vigilance is measured by the Coldstein's

(1 959) Coping-Avoidance Sentence Completion Test (Andrew 1 967, 1 970).

Other scales used multidimensional approaches such as the Defense

Mechanisrn lnventory (Gleser and lhilevich 1969) and the Joffe and

Naditch's (1 977) Coping-defense measure.

COPINC MEASURE: REPRESSION-SENSITIZATION

The repressive literature stems from the denial literature. Repressors

when presented with threatening situations or stimuli tend to avoid

disturbing cognitions by ignoring the threat or denying its existence.

Sensitizers, however, are very alert to threatening situations and tend to

focus on and magnify their ability t o do harm (Budd 1985; Roth 1986;

Weinberger 1979). Repressors tend to underplay or deny their anxiety,

whereas sensitizers tend to exaggerate their anxiety. Since a repressor is

characterized by defensiveness and preoccupation with avoiding negative

emotions (anxiety) we would expect them to be information-avoidant,

believing that avoiding information will help them to better cope with the

situation. Sensitizers, on the other hand, who are viewed as extremely

vigilant would be information-seeking, believing that information will help

them to better cope with the situation.

To operationalize the concept of repressor and sensitizer the Byrne

Repression-Sensitization Scale (Byrne 1 961 ) was developed. Although, the

Byrne (1 961 ) scale has been frequently used, its psychornetric and

theoretical properties have been questioned (Lazarus 1974; Weinberger

1979). Weinbeger e t al. (1 979) developed their own repression-

sensitization measure t o overcome some of the problems inherent in the

Byrne (1 963) measures such as distinguishing between true repressors

(repression of anxious feelings) and truly low-anxious persons (experience

low levels o f anxiety, showing no emotional upsets). Weinberger et al.

(1 979) combined the Marlowe-Crowne Social Desirability Scale and the

Talyor Manifest Anxiety Scale to establish the classification o f repressor

and sensitizer. The Marlowe-Crowne Social Desirability Scale was used t o

differentiate between low-anxious persons and repressors by classifying

them according to the degree of defensiveness (low or high). The Talyor

Manifest Anxiety Scale rates the respondent's degree o f anxiety (low or

high). These scores were then combined and divided at the mean to create

four defensiveness categories: true repressors (low anxiety, high social

desirability); truly anxious (high anxiety, low social desirability); repressive

anxious (high anxiety, high social desirability); and truly low anxious (low

anxiety, low social desirability).

Although the literature examining the influence of coping style on

preference for information i s sparse the studies that have been done

suggest that coping style influences information gain and medical

outcomes (Shaw et al. 1985.1 986; Murphy et al. 1989; Levine et al. 1987;

Shipley 1978).

Shaw et al. (1 985) used the Weinberger et al. (1 979) measure of

sensitization-repression in his study that examined the influence of coping

style on information gain and medical outcomes. The results indicated

that patients who denied more gained less information; patients who

scored high on social desirability gained less information and repressors

gained less information. Repressors with high risk factor information

reported more complications and poorer psychomedical functioning, and

2) sensitizers with low risk factor information reported poorer social

functioning. The researchers concluded that sensitizers should be more

comfortable in a high information setting whereas repressors should be

more comfortable in low information setting.

Another study conducted by Shaw et al. (1 986) examined the relationship

between coping style, information and medical outcomes. They combined

the low anxious and repressive anxious categories developed by

Weinberger because they found little difference between the two. The new

categories that they employed were labelled: true repressors, effective

copers and sensitizers. Using this classification system they found that

repressors with a high level o f cardiac information (coping style-

information level mismatch) and no history of heart attack were at higher

risk for late medical complications; and sensitizers with a low level o f

cardiac information (coping style-information level mismatch) and whose

PTCA was only moderately successful were at higher risk for coronary

artery re-stenosis.

A study by Murphy et al. (1 989) examined coping style and patient

knowledge. Prior to their procedure, patients were required to attend a

structured educational program. The researchers found that patients with

a repressive coping style learned less and the low anxious learned more

than the other coping groups during hospitalization, however, they

did not find significant difference at 6 month or two year follow-up. They

found that effective copers maintained that highest level of knowledge

over the 2-year period.

Shipley et al. (1 979) investigated the ef fea of information on and coping

style. The researchers found that sensitizers experienced less anxiety

given information whereas repressors who had either no effect or an

increase in anxiety. Shipley et al. (1 978) suggests that "sensitizers be

prepared extensively and repressors left alone or at least left with their

defenses" (Shipley et al. 1978, 506).

Coping style may also be related to patient satisfaction with

communication, and medical knowledge (Steptoe et al. 1991). The results

indicated that patients who reported the highest level of satisfaction with

information were more avoidant and less anxious. The researchers

conclude that " patients' predispositions to cope with stress by seeking out

information about the threat or by avoiding information has an impact on

satisfaction with communication" and thus "patients must be able to select

a level of detail and a degree of confrontation with their condition that

they require" (Steptoe e t a1.631,1991).

To date, no studies have been done that examine the relationship between

coping style and preference for participation in treatment decision making.

Based on this literature, we hypothesized that coping style would be

correlated with the amount of information patients desire such that,

sensitizers will want a high level of information whereas, repressors will

want a low level of information.

We therefore tested the following hypotheses:

Hypothesis I

Most patients want to be informed.

Hypothesis II

Most patients do not want to be involved in problem solving.

Hypothesis III

Most patients want to be involved in decision making.

Hypothesis IV

Patients will be more inclined to hand over control to physicians in situations involving risk of mortality than thcsc involving morbidity or quality of life.

Hypothesis V

Coping style will be correlated with the amount of information patients desire:

i) sensitizers will want a high level of information; and ii) repressors will want a low level of information.

Hypothesis VI

Coping style will be correlated with patient preference in treatment choice:

i) sensitizers will want to be involved in treatment choice to a greater degree than repressors.

CHAPTER II

METHODOLOCY

This chapter deals with:

study population; ethics; sample size; sampting procedures; sample quality; the questionnaire; scales used; coding; data quality; strengths and limitations of methods used.

STUDY POPULATION

There were two groups of potential respondents: cardiac patients and

nursing students. The f i r s t comprised four hundred and sixty-four

patients undergoing a coronary artery angiogram, of whom 300 returned

completed questionnaires. The second group comprised a convience

sample of approximately fifty nursing students taking an university class

and was used for evaluating test-retest reliability.

ETHICAL REVIEW

The questionnaire was submitted to and approved by the Human Subject

Certification for Physical Sciences 6 Life (including Medical) Sciences

Review Committee of the University of Toronto. Patients provided

informed consent by returning the mailed questionnaire.

SAMPLINC PROCEDURES

The study population was patients at the Cardiovascular Investigation Unit

of a Toronto teaching hospital. The hospital was primarily selected

because it treated a large number of patients from the Toronto and

surrounding area (Le. Barrie). Other influencing factors were its size,

proximity, and the investigators familiarity with the hospital.

A l ist of al1 the cardiologists who referred patients to the Cardiovascular

lnvestigative Unit (CU) at the Toronto hospital was obtained, and each

cardiologist was sent a letter asking permission to approach their patients

at the time of angiogram for recruitment into the study. Confirmation of

participation by the cardiologist was either written or verbal.

Approximately ten cardiologists were approached.

All cases were located through a daily patient caseload sheet provided by

the coordinator for the Cardiovascular Investigation Unit. The

exclusionary criteria that were used were: patients had to be staying in

either the Day Bed Unit or the Short Stay Unit, had to speak and read

English, were not experiencing complications in hospital, and did not

refuse.

Before participating in the study, al1 subjects were approached by the

researcher, either before or after the patient had their procedure, and were

asked to participate in the study. Each patient was explained the purpose

of the study and asked to take the Health Care Decisions Survey home with

them, complete it, and t o return it as soon as possible to the principal

investigator using a self addressed postage paid envelope. If the

questionnaire package was not returned within about four weeks, a

telephone follow-up was carried out (approximately 25). If questionnaires

were said to have been returned by the subject, but were never received

by the principal investigator, the subject was sent another questionnaire

to complete.

Four hundred and sixty-four patients schedufed for an angiogram were

approached. Of those, 41 6 (89%) were recruited into the study, 41 (9%)

were excluded, and 7 (1%) refused to participate. Subjects who were

recruited into the study were given a questionnaire to take home,

complete and mail back within three weeks. Subjects who forgot the

questionnaire in hospital were coded as missing (approximately 4). Data

collection began on January 6 , 1993 and was completed April 8, 1 993.

On average. recruitment of subjects took place three days per week.

RESPONSE RATES

Eligible questionnaires received on or before June 1 5. 1 993, were coded

and included in the study. The response rate for those recruited into the

study was 300 (72%). Two additional questionnaires were received after

the cut-off date and are not included. According to Babbie (1 986) a

response rate of 70 per cent or greater is considered to be very good.

QUESTIONNAIRE CONTENT

The questionnaire consisted of four sections. The first section consisted

of three vignettes with questions focusing on problern solving and

decision rnaking. The second section inquired about attitudes toward

medical care, preference for decision making and information. To measure

this the Ende (1 989) Autonomy Preference Index (API) and the Krantz

(1 980) Health Opinion Survey (HOS) were employed. The third section

concerned coping abilities and used the Repression-Sensitization Scale.

The final section consisted of basic demographic and background

information questions including marital status, education level,

employment status, past medical history, and overall health.

SCALES USE0

The Problem Solving-Decision Making Scale (PSDMS) had been developed

for the purpose o f this study. Three established questionnaires were

emplyed: 1) Health Opinion Survey, 2) Autonomy Preference Index, and

3) Repression-Sensization Scale.

Health Opinion Suwey (HOS)

The Health Opinion Survey was developed by Krantz (1 980) to measure

patient attitudes towards toward treatment approaches and consists of

two subscales, one measuring preferences for information and the other

measuring preferences for behavioral involvement. The first scale

measures information, composed of seven items measuring a patients

desire to be informed about medical decisions. The second scale

measures behavioral involvement, composed of nine items measuring a

patients attitude toward self-treatment and active behavioral involvement

o f patients in medical care. The total combined score of the two a priori

subscales provides an overall measure of attitude toward medical

treatment. A high score indicates positive attitude toward participation in

medical care, conversely a low score indicates a passive att i tude towards

participation.

One o f the objectives of this study was to assess the relationship between

coping style and information preference. The Health Opinion Survey was

selected on the following grounds: it is an accepted measure for

information preference and it has been widely used (Neufeld 1986). The

total HOS has a reported Kuder-Richardson reliability o f -77. the Behavioral

Involvement and Information subscales were -74 and .76, respectively

(Krantz 1980).

Repression-Sensitization Scale

The Repression-Sensization measure used in this study was the rnodified

version o f the Byrne Repression-Sensitization Scale adopted by Weinberger

e t al. (1 979). The scale used the short forrns o f the Taylor Manifest

Anxiety Scale (1 953) and the Marlowe-Crowne Social Desirability Scale

(1 960). 60th scales have 20 true-false statements, which were interrnixed

to form one questionnaire. The Taylor Manifest Anxiety Scale (TMAS) and

the Marlowe-Crowne Social Desirability (MCSD) scores were split at the

mean to yield the coping groups: "repressive anxious" (high TMAS and

high MCSD), "true anxious" (high TMAS and iow MCSD), "low anxious"

(low TMAS and low MSCD) and "true repressors" (low TMAS and high

MCSD).

Adequate reliability and validity for the TMAS and MCSD scales exist;

however, these scales were used to form the Weinberger et al. (1 979)

repressive style groups. Reliability has not been established for the

combination o f the TMAS and MCSD scales in measuring repression-

sensitization. However. several studies provide suppon for the pred ictive

and concurrent validity o f this measure (Shaw 1985, Weinberger 1979,

Asendorpf 1983).

The Autonomy Preference lndex (API)

The Autonomy Preference lndex was developed by Ende et al. (1 989) to

distinguish between components o f patient autonomy: desire for

information and desire for participation. This test instrument consists of

two scales: an 8-item scale on information seeking and a 15-item scale on

decision making (6 general items and 9 items related to 3 clinical

vignettes). items are scored on a five point Likert scale. Total scores are

linearly adjusted to range from O to 100, where O i s deemed to indicate no

desire for information or participation in decision making and 100

indicates a strong desire for information and participation in decision

making.

Ende (1 989) reported the test-retest reliability (calculated using Pearson

product-moment correlations) for the decision making scale was 0.84; for

the information-seeking scale 0.83. They reported al1 interna1 consistency

reliability coefficient using the Cronbach alpha coefficient was 0.82 for

each scale.

The Autonomy Preference Index was chosen for i t s information and

decision making subscales. The information subscale was deemed useful

for assessing the relationship between coping style and information

preference. The decision making subscale would seem to be a good

cornparison against our scale.

For the purposes of our study we only used 6 of the 1 5 decision making

items. The 6 questions employed were: 1) The important medical decisions

should be made by your doctor, not by you; 2) You should go along with

your doctor's advice even if you disagree with it; 3) When hospitalized, you

should not be making decisions about your own care; 4) You should feel

free to make decisions about everyday medical problems; 5) If you were

sick, as your illness became worse you would want your doctor to take

greater control; and 6) You should decide how frequently you need a

check-up. The patients were to respond to each item on a five-point Likert

scale; response categories ranged from "strongly disagree" to "strongly

ag ree".

The remaining 9 decision making questions were not employed because

they were specific to three hypothetical vignettes which were not going to

be used in our study.

Problern Solving-Decision Making Scale (PSDMS)

For the purpose of this study. we devised a new scale, which used the

same response categories employed by Ende et al. (1 989) in his Autonomy

Preference Index. The five response categories were: "1 =the doctor alone";

"2=mostly the doctor"; "3=both equally"; "4=mostly me"; and "5-me alone".

The scale used three vignettes briefly describing a health problem.

Responses were elicited for 6 statements, written to encompass the

domain of preferences for rote in problem solving and decision making

situations in medical treatment.

Four items were deemed problern-solving tasks, concerned with patients

attitudes toward active participation in the problem-solving component of

clinical behaviour: (a) Who should determine (diagnose) what the likely

causes of your symptoms are? (b) Who should determine what the

treatment options are? (c) Who should determine what the risks and

benefits for each treatment option are?, (d) Who should determine how

likely each of these risks and benefits are to happen? Two items were

deemed decision-making tasks measuring the desire to be actively

involved in the decision making component medical decision- making:

(e) Civen the risks and benefits of these possible treatments, who should

decide how acceptable those risks and benefits are for you?. and (O Given

all the information about risks and benefits of the possible treatments.

who should decide which treatment option should be selected?

Three vignettes were used describing various health situations. The

morbidity vignette read: "Suppose you often experience a burning

sensation when you go to the bathroom. You usually have to push to

begin to urinate and sometimes dribbling occurs after urination";

The mortalityvignette read: "Suppose you had mild chest pain for three

days and decided that you should visit your doctor about this". The quality

of life vignette read: "Suppose you and your partner have been trying for

pregnancy, but have been unsuccessful for more than a year".

RELlABlLlTY & VALlDlTY

The reliability and validity of the instrument is addressed in Chapter III.

CODINC

The questionnaire was coded and after the coding, every questionnaire

was checked for coder errors. Questions in which the respondent

indicated two answers were coded as missing if the answers were

categorical and averaged if numeric. When respondents circled more than

one response for educational level, the highest circled educational level

was taken. When a respondent indicate a number range (i.e. 9 to 10) the

numbers were averaged.

DATA QUALITY

Two basic checks were made of the raw data. Basic frequency tables for

each item were reviewed to see if codes were present which were not

correct, and the raw data was manually checked with the questionnaires to

detect any data entry errors. Once errors detected in this way had been

eliminated, we tested for reliability of the decision making and information

preference measures and the psychological measure.

DATA MANAGEMENT

The data was managed using the SAS-PC statistical program. This

consisted of data records identified by respondents unique identification

nurnber making sure that there was no information available that would

have enabled these subjects to be identified or traced. All identifying

information was kept in the possession of the research student until the

completion of the analysis and then destroyed.

During the course of the study, data was entered directly in SAS-Pt

statistical program. Backup of the data was performed on a weekly basis.

At the completion of the study, subsequent analysis was performed on an

IBM-compatible micro-computer, using both the SAS-PC and SPSS-PC

statistical programs.

STATISTICS EMPLOVED

Ordinal data were analyzed using both pararnetric and nonparametric

statistics. Since both techniques gave us similar results, it was decided

that the parametric tests would primarily be presented in the main body of

t he report as they have the advantage of being more powerful and flexible

than nonparametric techniques. When necessary the equivalent

nonparametric statistics are presented in the main body of the report (see

also Appendix B). Much of the analysis will be descriptive (e.g.,

frequencies and cross-tabuiations, with tests of significance and

associations). Univariate analysis and multivariate analysis techniques

were ernployed.

CHAPTER I I I

SCALE OEVELOPMENT

For scale development we decided t o use two methods for scale validation:

factor analysis and reliability testing. Factor analysis was utilized as an

adjunct to the other methods for scale development. Since we had

previously anticipated item groupings. factor analysis would provide us

with some information on the factorial validity of the Problem Solving and

Decision Making Scales.

For reliability testing, we used a nursing student sample for the test-retest

component. The results wil l be presented afier the factor analysis results.

ADEQUACY OF SAMPLE SlZE

Factor analysis was utilized as an adjunct to the other methods for scale

validation. Nunnally (1 978) States that in scale development an adequate

sample size would be 300, while Kline (1 986) recommended 200. The

larger the sample, the less subject variance will be a significant concern.

Comrey (1 988) indicated that an acceptable sample size for ordinary factor

analysis that involved no more than 40 items would be 200, while

Nunnally (1 978) presents a more stringent position of 20 subjects per

variable. Boyle (1 985) indicated that a minimum sample of 250 subjects is

required for factor analysis. The present sample of 300 subjects satisfies

al1 these criteria.

METHODS

To support our hypothesis that the two scales problem solving and

decision making, were two constructs, the items were subjected to a

principal-components analysis with a varimax rotation, listwise deletion.

An item was judged to load on a component if it had a loading of 0.50 or

greater with no loading of 0.50 or more on any other component. A factor

loading with an absolute value o f 0.40 or more i s considered acceptable.

(Kerlinger 1973; Munro e t al.1986).

Before embarking on a decision of the factor analysis results it is necessary

to describe the variables employed. The morbidity vignette (scenario) is

denoted SCENA, the mortality scenario SCENB, and the quality of life

scenario SCENC. The final letter refers to the item as follows:

A: Diagnosis: "Who should determine (diagnose) what the likely causes of your symptoms are?' (SCENAA, SCENBA, SCENCA).

B: Options: "Who should determine what the treatment options are?" (SCENAB, SCENBB, SCENCB).

C: Risks and Benefits: 'Who should determine what the risks and benefits for each treatment option are?" (SCENAC, SCENBC, SCENCC).

D: Probability: 'Who should determine how likely each of these risks and benefits are to happen?" (SCENAD, SCENBD, SCENCD).

E: Utility. "Civen the risks and benefits of these possible treatments, who should decide how acceptable those risks and benefits are for you?" (SCENAE, SCENBE, SCENCE).

F: What is Done: "Given al1 the information about risks and benefits of the possible treatments, who should decide which treatment option should be selected?" (SCENAF, SCENBF, SCENCF).

The rnean scores for each item on the scale ranged between 1.56 and 3.22;

the mean scores for the problem solving items (A,B,C,D) ranged between

1.56 and 2.02, indicating handing over control; for the decision making

(E,F) items 2.94 t o 3.22, indicating sharing control (see Table 3.1).

Table 3.1 Mean Score for Patient Population

Mean Standard Item Score deviation

SCENAA SCENAB SCENAC SCENAD SCENAE SCENAF

SCENBA SCENBB SCENBC SCENBD SCENBE SCENBF

Quality of Life:

SCENCA SCENCB SCENCC SCENCD SCENCE SCENCF

Total

As a starting point a univariate correlation matrix was done to determine

what combinations of items should be subjeaed to principle-components

analysis (see Appendix B). Although, the theory suggested that there

should be two dimensions, we d id not initially specify a two factor

solution. The communality estimates for al1 the factor analysis solutions

were acceptable (Comrey 1973). Only the rotated factor solutions have

been presented (see Appendix 0 for unrotated factor solutions). All

significant loadings have been italicized.

Factor analysis was run for each vignette separately and then for the

pooled items. The first correlation matrix to be inputed into the factor

analysis included the six items from the morbidity vignette. Factor I

consisted of four items, which indeed highlighted the problem-solving

dimension. The variables extracted were: scenaa (0.737). scenab (0.723).

scenac (0.776), scenad (0.705). Factor II involved the two decision making

items: scenae (0.850), and scenaf (0.823). The variance extracted by the

first factor was 42.7 per cent and 2 1.4 per cent for the second factor; the

total extracted variance for the two factors was 64.1 pet cent. The

correlation between the factors was 0.539 (see Table 3.2).

TABLE 3.2 Initial Principal components matrix, varimax rotation for morbidity vignette

Item Factor I Factor II Communality h2

SCENAA SCENAB SCENAC SCENAD SCENAE SCENAF Eigen-value Variance (%)

Similarly, factor analysis of the six items from the rnortality vignette gave

the four problem solving items as Factor 1: scenba (0.682'). scenbb (0.876),

scen bc (0.794). scenbd (0.782). Factor II again involved the two decision

making items: scenbe (0.870) and scenbf (0.850). The variance extracted

was 46.2 per cent for the first factor and 20.1 per cent for the second

factor; the total extracted variance for the two factors was 66.3 per cent.

The correlation between the factors was 0.475 (see Table 3.3).

TABLE 3.3 Initial Principal components matrix, varimax rotation for mortality vignette

Item Factor I Factor II Communality h2

SCENBA SCENBB SCENBC SCENBD SCENBE SCENBF Eigen-val ue Variance (%)

Next, the six items from the quality of life vignette was subjected to factor

analysis. Again, Factor I consisted of the four items highlighting problem

solving: scenca (O. 702). scencb (0.794). scencc (0.825). scencd (0.805).

Factor II again involved the two items highlighting decision making: scence

(0.897) and scencf (0.898). The variance extracted by the first factor was

62.8 per cent and 22.6 per cent for the second factor; the total extracted

variance for the two factors was 85.4 per cent. The correlation between

the factors was 0.470 (see Table 3.4).

TABLE 3.4 Initial Principal components rnatrix. varimax rotation for quality of life vignette

SCENCA SCENCB SCENCC SCENCD SCENCE SCENCF Eigen-value Variance (%)

Factor I Factor II Communality h2

-702 -794 -825 . BOS 1 39 1 1 7 2.807

62.8

Based on the results f rom the previous factor analyses, it was decided that

t he final correlation rnatrix t o be inputed into the factor analysis prograrn

would include al1 eighteen items from the three vignettes. Since we had

already established that two factors would be extracted, a 2 factor forced

solution was specified.

For the final analysis, the significant loadings on Factor I involved al1 the

problem-solving dimension. The relevant variables were: scenaa (0.602),

scenba (0.563), scenca (0.583), scenab (0.6 1 6 ) . scenbb (0.772), scencb

(O.689), scenac (O.680), scen bc (0. V O ) , scencc (0.772), scenad (0.6631,

scenbd (0.73 1 ) , scencd (0.73 1). Factor II focused on the decision-making

component. The variables were: scenae (0.786), scenbe (0.793), scence

(0.799), scenaf (0.824), scenbf (0.834), scencf (0.814). The variance

extracted by the first factor was 37.8 per cent and 17.5 per cent for the

second factor; the total extracted variance for the two factors was 55.3 per

cent. The correlation between the two factors was 0.543 (see Table 3.5).

Table 3.5 Principal components matrix, varimax rotation, two forced for morbidity, mortality and quality of life vignettes

Item Factor 1 Factor 2 Cornmunality Ma

SCENBB ,772 SCENCC ,772 SCENBC .770 SCENBD .731 SCENCD ,731 SCENCB ,690 SCENAC .680 SCENAD .663 SCENAB .616 SCENAA -602 SCENCA -583 SCENBA .563 SCENBF 1 52 SCENAF 1 2 5 SCENCF 1 24 SCENCE 124 SCENBE 1 09 SCENAE 1 3 3 Eigen-value 6.81 1 Variance(%) 37.8

RELIABILITY

Establishing reliability is a priority for scale development. The reliability

coefficient is determined from the intercorrelations of items on test; i ts

size i s based on the average correlation among items (Nunnally 1978).

In accordance with Nunnally's (1 978) proposals, coefficient alpha was used

to ascertain the internal consistency of the scale (Cronbach 1970).

According to Streiner (1 989) and Nunnally (1 978) Cronbach's alpha's

should exceed 0.80.

We investigated the reliability (internal consistency) of the scale using both

the patient and nursing student sample.

To begin with Cronbach's alpha coefficient was calculated for al1 the scales

employed. Alpha coefficient for internal reliability was very high for both

the problem-solving and decision-making subscales. Cronbach's alpha was

acceptable for al1 other scales (alpha ~ ~ 0 . 7 3 ) except for the Ende

Information Scale (alpha = 0.1 1 ), Ende Decision Making Scale (alpha =

0.60), Ende Cornbined (alpha =.56), and the two item Decision Making-

Mortality Vignette (alpha =0.68) (Table 3.6).

Cronbach's alpha for the problem-solving subscale using the 12 items from

the rnorbidity, rnortality and quality of life vignettes was 0.901 ; the 8 items

from the morbidity and rnortality vignettes was 0.860; and the 4 items

from the mortality vignette 0.787. Cronbach's alpha for the Krantz

lnformation and behavioural subscales using our patient sample was 0.73

and 0.75, respectively. Our results are very similar to what Krantz (1 980)

reported in his original work. Cronbach's alpha for the Ende Information

subscale was very 0.1 1 , which is very low compared the original

alpha = 0.80 reported by Ende (1 989). Since we did not employ the entire

Ende (1 989) Decision Making subscale. the alpha that i s reported in this

study cannot be compared to that originally reported by Ende (1 989).

Table 3.6 Cronbach's Coefficient Alpha (Patient Sample)

Variable Alpha N

Cases Items

Taylor Manifest Anxiety Scale Marlowe Crowne Social Desirability Health Opinion Survey-Information Health Opinion Survey-Behaviour Health Opinion Survey Autonomy Preference Index/Decision Making Autonomy Preference Scale-Information Problem Solving (3 vignettes) Problem Solving (2 vignettes - A & B) Problem Solving (1 vignettes - B) Decision Making (3 vignettes) Decision Making (2 vignettes - A & 8) Decision Making (1 vignette - B) Problem Solving and Decision Making (3 vignettes) Problem Solving and Decision Making (2 vignettes - A & B) Problem Solving and Decision Making (1 vignette - A) Problem Solving and Decision Making (1 vignette - B) Problem Solving and Decision Making (1 vignette - C)

ITEM-TOTAL CORRELATION

Item-total correlation was done using the eighteen problem solving and

decision making items. All item correlation coefficients were significant

and coefficient alpha was 0.901, showing a high level o f interna1

consistency. We also looked at Cronbach's alpha with items deleted.

reliability of the scale. Deleting items did not change alpha significantly.

Cronbach's alpha was cafculated using several combinations of items

(Table 3.7).

Table 3.7 ltem analysis (N =18)

Squared alpha Item-Total Multiple item

Item Correlation Correlation deleted

SCENAA -328 .368 SCENAB .547 -462 SCENAC .609 .616 SCENAD 590 .578 SCENAE .532 .681 SCENAF -560 .693 SCENBA -450 -407 SCEN88 .643 -61 O SCENBC .643 -634 SCENBD S72 -561 SCENBE - 5 1 9 .680 SCENBF 5 9 2 -739 SCENCA -406 .407 SCENCB -559 -532 SCENCC -573 -637 SCENCD -594 5 9 6 SCENCE .545 .618 SCENCF .552 .703 Total 40.40 9.68

Alpha Standardized item alpha

(n=25O)

Elimination of the decision making items frorn the scale caused little

change in alpha. From the results we can assume that this scale is

useable. For future use, we plan t o use mortality and morbidity vignette

since the fertil ity vignette does not add much t o our alphas.

CORRELATIONS WlTH OTHER SCALES

Concurrent validity was established among the Problem Solving-Decision

Making subscales using two other measures: 1) Krantz Behaviour Subscale;

and 3) an i tem that asked patients t o indicate, "Which statement best

describes your attitude towards medical care?" by choosing one o f five

statements: 'The patient should take complete control"; The patient

should have more control than the doctorf*; ''The patient and the doctor

should share control equally"; " The doctor should have more control than

the patient"; and 'The doctor should take complete control". There was a

moderate correlation with patients' responses to this scale and the

decision making scores (r=-0.44; p<0.0001), and only a low correlation

with the Krantz Behavioural Subscale (r=0.27; p<0.0001).

NURSES DATA: PAIRED T-TESTS

To examine the reproducibility o f the scale we employed the test-rest

reliability method. This would provide us wi th some information regarding

the stability of our instrument. The 50 nursing students were

administered the PSDMS in conjunction with the Health Opinion Survey

(Krantz 1980). and the Autonomy Preference Index (Ende 1989) twice over

approximately a 4-week period t o determine test-retest reliability.

NURSINC SAMPLE: DEMOCRAPHIC INFORMATION

Table 3.8 reports demographic information for the nursing sample. The

pretest sample included 5 0 subjects; the posttest sample consisted o f 41

subjects. The total number of subjects matched for the combined pretest

and posttest sample was 22.

In sumrnary, our nursing sample was predominately Young, fernale,

university educated, tended to be employed part-time or full-time and had

a positive health status.

Table 3.8 Demographic Characteristics: Nursing Sample

Pre-test Post-test 6) No. (46)

Male Fernale

Marital Status Never Married 27 (54.0%) 16 (39.0%) Married (common-law) 21 (42.0%) 1 (2.4%) Separated --- 4 (9.6%) Divorced 2 (4.0%) --- Widowed --- ---

Table 3.8 Continued-Demographic Characteristics: Nursing Sample

Pre-test Post-test No. (%) No. (96)

Educational Level Some University/College 23 (46.0%) 25 (61.0%) Corn pleted University/College 21 (42.0%) 16 (39.0%) Some Professional/Craduate 4 (8.0%) --- Completed Professional/Graduate 2 (4.0%) ---

Employrnent Status Employed Full-time Employed Part-time Not Employed Other

Health Status Excellent Very Cood Cood Fair

Pre-test: Mean age 30.9 years, SD 9.68 years Post-test: Mean age 34.6 years, SD 9.68 years

To determine stability of the Problem Solving-Decision Making measure we

employed test-retest Pearson product-moment correlation (r) as a measure

of reliability. The test-retest correlations must be signficantly correlated.

Paired t-tests were also computed.

Results are based on 22 cases who completed both tasks. It is compared

on seven variables which are parts of the scales used (endedms, endinfs,

krantzs, krbehav, krinfos, scendm, scenps). Table 3.9 presents the results

from the test-retest correlations.

Table 3.9 Test-retest Pearson Produd-moment Correlations: Nursing Sample

- - - - - - - --

Variable Cases Cross-Prod Dev Variance-Covar r* P

ENDEDMS ENDEDMSZ 22 807.796 38.466 .336 1 2 7

ENDEINFS ENDINFSZ 22 1194.957 56.902 5 1 6 .O1 4

KRANTZS KRANTZSZ 22 1 .S90 .O75 .46 1 .O3 1

KRBEHAS KRBEHASZ 22 6.454 -307 -722 .O00

KR1 N FOS URI N FOS2 22 1.454 .O69 .393 .O70

SCENDM SCENDMZ 22 8.988 -428 -687 .O00

SCENPS SCENPSZ 21 2.326 -1 16 .462 .O35

"Pearson product-moment correlation coefficients

The Pearson product-moment correlation (r) revealed significant

differences between the pretest and posttest for al1 scales except the Ende

(1 989) Decision Making Subscale. These results indicate good stability of

the scales over time.

Further confidence in stability arises because the paired t-test analysis

revealed no significant difference between pretest and posttest for any of

the scales. The results are presented in Table 3.1 0.

Table 3.10 Paired T-tests: Nursing Sample

SE of Paired Differences Variable Mean SE of Mean t-value df 2-tail sig

ENDEDMS ENDEDMSZ

KRANTZS KRANTZS2

KRBEHAS KRBEHAS2

KR1 NFOS KRINFOSZ

*SCENPS SCENPSZ

SCENDM SCENDMZ

n=22, *n=21 p . 0 5 95% confidence lnterval

Individual items were also subjected to paried t-test analysis (see Apendix

B). The results indicated that there were no significant differences

between pretest and posttest scores.

In conclusion, we can see that our scale has proven validity and reliability.

Factor analysis was utilized as an adjunct to the other methods for scale

development. Since we had previously anticipated item groupings, factor

analysis would provide us with some information on the factorial validity

of the Problem Solving-Decision Making Scale. As part o f our reliability

testing we Cronbachgs alpha coefficient was calculated for al1 the scales

employed. Alpha coefficient for interna1 reliability was very high for both

the problern solving and decision rnaking subscales. Cronbach's alpha was

acceptable for al1 other scales. The results show that our PSDM has good

test characteristics, and is in the same range as other scales employed.

The results supported Our hypothesis that the problem solving-decision

making were two constructs.

CHAPTER IV

CHARACTERISTICS OF PATIENT SAMPLE

Basic Demographic Characteristics

This chapter presents data on some basic characteristics of the patient

participants. including sex, age, marital status, educational level.

employment status, and health state.

Sex

In our sample 74.7 per cent were male, 25.3 per cent female; there were

I l rnissing.

Age

Table 4.1 shows the age of respondents at time of angiogram. The age

range was quite broad: the youngest respondent was 24.5 years; the

oldest was 82.6 years. The mean age was 59.6 years, SD 10.7 years.

Table 4.1 Age of Respondents - -

Age Croup No. (%) - -- - -

5 0 and under 60 (21 -3%)

5 1 to 65 140 (49.6%)

Over 65 82 (29.1%)

(n=282)

Marital Status

Age was related to marital status. Civen that the mean age of our sample

was 59 years it is not surprising that most (86%) were married or common-

law (Table 4.2).

Table 4.2 Marital Status of Respondents

Marital Status No.(%) -- --

Never Married 8 (3.0%)

Married/common-law 247 (86.0%)

Separated S (2.0%)

Divorced 14 (5.0%)

Widowed 1 3 (4.0%)

(n=287)

Ed ucation

Table 4.3 shows education o f respondents, in eight categories: some

elementary school, cornpleted elementary school, some high school,

cornpleted high school, some university/college, cornpleted

university/college. some professional or graduate school. completed

professional or graduate school.

The sample may be roughly divided into quarters: one-quarter with some

to complete elementary education, one-quarter with some to complete

secondary education, and one-quarter with some to complete university

education and one-quarter with some to complete professional or graduate

education.

Table 4.3 Respondent's Level of Education (n=29 1 )

Level of Education No. (%)

Some Elementary School

Completed Elementary School

Some High School

Completed High School

Some University/College

Completed University/College

Some Professional/Craduate School

Completed Professional/Craduate School

Employment Status

Table 4.4 shows employment status. Almost two thirds of our sample

were either employed full-time (34 per cent) or retired (39 per cent).

Table 4.4 Respondent's Ernployment Status

Employment Status No. (%)

Employed Full-time 99 (34.0%)

Employed Part-time 17 (6.0%)

Not employed 12 (4.0%)

Retired 1 14 (39.0%)

Homemaker 20 (7.0%)

*Other 30 (1 0.0%)

(n=292)

'Other includes: self employed, students

Previous Angiogram

Almost one-third of our sample indicated that they have had an angiogram

in the past. For the remaining two-thirds this was their first angiogram.

Only 9 pet cent of respondents indicated that they have had angioplasty to

open up their arteries and 10 per cent indicated they had bypass surgery.

O f these, 2.4 per cent have undergone both angioplasty and bypass

surgery (see Table 4.5).

Not surprisingly, about two-thirds of respondents indicated they had other

health/illness problems. Some of the reported illnesses were: low back

pain, arthritis, diabetes, hypertension, stroke, prostate surgery.

Overall health

Overall health was divided into five categories: excellent, very good, good,

fair and poor. Of al1 respondents, only 6 (2.1 %) indicated that their health

was excellent, 36 (1 2.5%) indicated very good, 89 (31%) were good,

128 (44.6%) rated their health as fair and 28 (9.8%) as poor.

Table 4.5 Characteristics of Patient Sample

No. (%)

Previous angiogram No 181 (62.6%) Yes 108 (37.4%)

Previous angioplasty No 264 (91 .O%) Yes 26 ( 9.0%)

Previous bypass No 261 (89.7%) Yes 30 (10.3%)

Other health problems No 102 (35.2%) Yes 188 (64.8%)

Attitudes Toward Medical Care

Table 4.6 reports views on medical care people receive in general and

satisfaction with the treatment of their cardiac condition.

Table 4.6 Attitudes Toward Medical Care

Question and Response Categories No. (%)

1. Generally, people are satisfied with the medical care they receive.

Strongly disagree Disagree Neither agree/disagree Agree Strongly agree

2. The quality of medical care that most people receive could be better.

Strongly disagree Disagree Neither agree/disagree Agree Strongly agree

Table 4.6 Continued - Attitudes Toward Medical Care

Question and Response Categories No. (%)

3. The care I have received from doaors in the last few years is just about perfect.

Strongly disagree Disagree Neither agree/disagree Agree Strongly agree

4. There are things about the medical care I have received that could be better.

Strongly disagree Disagree Neither agree/disagree Agree Strongly agree

5. Attitude toward medical care

The patient should take complete control The patient should have more control than the doctor The patient and doaor should share control equally The doctor should have more control than the patient The doctor should take cornplete control Other

Patients were asked about how they fe l t about the medical care people

receive i n general. Four questions were asked and patients were to give

their opinion using a five-point scale: 'strongly disagree', 'disagree',

'neither agree nor disagree', 'agree' and 'strongly agree'. The questions

were:

(1) Cenerally, people are satisfied wi th the medical care they receive;

(2) The quality o f medical care that mor t people receive could be bette r;

(3) The care I have received from doctors in the last few years is just about perfect;

(4) There are things about the medical care I have received that could be better; and

(5) Which statement best describes your own attitude towards medical care.

Overall. it appears that the ovenivhelming majority of patients agree that

generally people are satisfied w i th the medical care they, al though they

indicated tha t the quality o f medical care that most people receive could

be better.

About two-thirds of respondents indicated that the care they received from

doctors in t he last few years is just about perfect. Only about 20 per cent

thought there could be improvements with the care that they received.

Again, approximately 60 per cent of patients indicated that there are

things about the medical care they have received that could be bener.

About 20 per cent did not feel that improvements needed t o be made.

Satisfaction with Cardiologist

Respondents were asked a series of questions that provided us with some

descriptive information about their attitudes about the treatment of their

cardiac condition. Table 4.7 provides a sumrnary of the questions and

results.

Table 4.7 Satisfaction with Cardiologist

Questions and Responses No. (96)

Doctors seen about cardiac symptorns Family doctor 248 (84.9%) Cardiologist 276 (94.5%) Cardiac (heart) surgeon 98 (33.6%) Other 34 (1 1.6%)

(n=292)

I was pleased with how decisions were made? Strongly disagree 3 (1.0%) Disagree 12 (4.1%) Neither agree/disagree 29 (10.0%) Agree 178 (61 -2%) Strongly agree 69 (23.7%)

(n=291)

Table 4.7 Co-Wwed - Satisfaction with Cardiologist

Questions and Responses No. (%)

My role in rnaking these decisions was: Much more than I liked 2 (0.7%) More than I liked 7 (2.6%) Just Right 218 (80.1%) Less than I liked 40 (1 4.7%) Much less than f liked 5 (1.8%)

(n=272)

The doctors took charge: Much more than I liked More than I liked Just Right Less than I liked Much less than I liked

Information provide was: Much more than 1 liked More than I Iiked Just Right Less than I liked Much less than I liked

*Overall, satisfaction with medical care Extremely Satisfied 117 (40.9%) Satisfied 142 (49.7%) Neither Satisfied/Dissatisfied 19 ( 6.6%) Dissatisfied 6 (2.1%) Extremely Dissatisfied 2 (0.7%)

(n=286)

'Overall, how satisfied are you with the medical care that you have received for your current cardiac condition.

The following statement was given 'The next few questions ask specifically

how your feel about the way you and your specialist (Le. cardiologist)

made decisions about the treatment of the cardiac symptoms for which

you are now seeking help'. Based on this statement patients were asked

the following questions:

1 ) Which doctors have you seen about your cardiac symptoms?

2) 1 was pleased with how decisions were made. Patients were asked to rate using a five-point scale ranging from 'strongly disagree' to' strongly agree';

Questions 3,4 and 5 used a five point scale with the response categories:

'much more than I liked', 'more than I liked', 'just right', 'less than I liked'

and 'much less than I Iiked'.

3) My role in making the decisions was:

4) The doctors took charge:

5) Information provided was:

Patients, were also asked:

6) Overall, how satisfied are you with the medical care that you have received for your CU rrent cardiac condition?

The results indicated that the majority of patients had seen both a family

doctor and cardiologist about their cardiac symptoms.

An overwhelming majority, 85 per cent. of patient's were pleased with

how decisions were made. Only about 5 per cent indicated

dissatisfication.

The majority of patients, 80.1 per cent. indicated that their role in making

these decisions was 'just right'. Less that a fifth of respondents indicated

that their role in decision making was less that they liked. About 3 per

cent of patients indicated that their role in decision making was more than

they liked.

About 85.7 per cent indicated that their doctor took charge just the right

amount, whereas 10 per cent thought the doctor took charge more than

they liked. About 3 per cent o f patients thought the doctor should have

taken more control.

The majority of patients were satisfied with their role in decision making,

with only 25 per cent of patients reporting that the information provided

was less than they liked. Sixty-nine per cent felt that the information

provided was just right. About 3 per cent o f the patients felt that they

were given too much information.

An overwhelming majority. 90.6 per cent. of respondents indicated that

they were satisfied with the medical care that they had received for their

current cardiac condition.

To get some idea of patients attitudes toward the role o f the patient and

doctor should have in medical care. we asked them gave them six

statements and asked them to choose the one that best described their

own attitude towards medical care. The response categories were:

1) The patient should take complete control;

2) The patient should have more control than the doctor;

3) The patient and doctor should share control equally;

4) The doctor should have more control than the patient;

5) The doctor should take cornpletc control; and

6) Other

The results showed that over 60.3 per cent thought the patient and doctor

should share control equally, 6.4 per cent thought the patient should have

more control than the doctor. Only 24.8 per cent indicated that doctor

should have more control that the patient, and 5.7 per cent thought the

doctor should take cornplete control. These results, at first glance, indicate

little desire from these patients to control their care - most prefer shared

control, with a sizable minority wishing to hand over control to their

doctor. From this we can conclude that most patients do indeed want to

participate in treatment decision making although they do not want to

take complete control.

CHAPTER V

PARTICIPATION IN TTREATMENT CHOlCE

HYPOTHESIS I

Most Patients do want to be informed

The Health Opinion Survey (Krantz 1980) was constructed to

operationalize preference for self-care, active behavioral involvement in

health care, and health-related information. Although, the Health Opinion

Survey (HOS) provided descriptive data regarding patients attitudes toward

assuming an active and informed role in the health care process, this

section will only address the results from the information subscale.

Our results confirm the literature findings that most patients have a high

desire for information. Fifty-eight (20.1%) o f patients had low scores,

129 (44.6%) had medium scores and 102 (35.3%) had high scores for the

information subscale. About 20% of patients showed little desire to ask

questions and to be informed o f and involved in medical decisions

(Figure 5.1 ).

Figure 5.1

HOS Information Preference Subscale

LOW Medium High

El Level of Information

Our findings frorn the HOS information subscale are further suppo~ed by

Ende et al. (1 989) Autonomy Preference Index information subscale.

Expressed on a scale adjusted ta range frorn O to 100, where O refers to

strong disagreement with statements favouring patients' being informed,

5 0 to a neutral reaction to such statement, and 100 to a strong agreement,

the mean score for information seeking was 81 -39 2 10.79.

Table 5.1 and Figure 5.2 show Krantz lnformation Seeking Preference by

Age Croup. We see that 10.8 per cent in the age group '50 and under' want

low level of information compared to 16.4 per cent in the group '51 -65'

and 32.2 per cent in the greater than 65 group. We see that 43.1 per cent

want high information in the '50 and under' group, compared to 40.3 per

cent in the '51 -65' group, and 22.2 per cent in the greater than 65 group.

Table 5.1 HOS Information Preference by Age Croup

Age Croup lnformation Preference 50 and under 51 to 65 Creater

than 65 - -

Low 7 (1 0.8%) 22 (1 6.4%) 29 (32.2%)

Medium 30 (46.1%) 58 (43.3%) 41 (45.6%)

High 28 (43.1%) 54 (40.3%) 20 (22.2%)

Total (n=65) (n=134) (n=90) (n=289)

Figure 5.2

HOS Information ,Preference by Age Group 50 i t

Low Medium High

Level of Information

The results indicate that patients had a moderate preference for

information. Our findings support other studies that have documented

patients' desire to be informed (Vertinsky et al. 1 974; Strull et al. 1 984;

Lidz et al. 1982; Cassileth et al. 1980; Faden et al. 1981 ; and Harris et al.

1982).

In general, patients who were younger tended to prefer to be informed,

compared to older patients who preferred less information. This finding i s

consistent with other studies that have documented that older patients do

not want as much information (Ende et al. 1989; Degner et al. 1988;

Cassileth e t al. 1 980; Beisecker and Beisecker 1 990; Blanchard et al.

1 990).

Now that we have established that patients do indeed want information

the next question is what role do they want to play in making treatment

decisions.

Most Patents do not want to be involved in problem solving.

This section will deal with the hypothesis that most patients do not want

to be involved in problem solving. The results for al1 three vignettes will

be presented. To reiterate, the vignettes read as follows:

The Morbidity vignette read: "Suppose you often experience a burning sensation when you go to the bathroom. You usually have to push to begin to urinate and sometimes dribbling occurs after urination";

The mortality vignette read: "Suppose you had mild chest pain for three days and decided that you should visit your doctor about this".

The quality of life vignette read: "Suppose you and your partner have been trying for pregnancy, but have been unsuccessful for more than a year".

Once again, the four problem solving questions were:

A: Diagnosis: 'Who should determine (diagnose) what the likely causes of your symptoms are?"

B: Options: 'Who should determine what the treatment options are?"

C: Risks and Benefits: "Who should determine what the risks and benefits for each treatment option are?*'

D: Probability 'Who should determine how likely each of these risks and benefits are to happen?''

The response categories were: 'Doctor Only'; 'Mostly Doctor', Doctor and

you equally', 'rnostly you' and 'you only'.

Looking at the results from the morbidity vignette, we can see that

patients overwhelming want to give control to their doctor (Table 5.2).

Table 5.2 Morbidity Vignette: Problem Solving Questions

Doctor Mostly Mostly You N Item Alone Doctor 60th You Alone Cases

Scenaa 1 32(46.2%) 90(31.5%) 62(21.7%) 1 ( 0.3%) U 0.3%) 286

Scenab 120(41.8%) 1 02(35.5%) 63(22.0%) 1 ( 0.3%) l ( 0.3%) 287

Scenac 97(33.7%) 1 02(35.4%) 83(28.8%) 6( 2.1%) - 288

Scenad 1 1 1(38.8%) 1 33(43.0%) 45(15.7%) 7( 2.4%) - 286

Figure 5.3 presents the results from the diagnosis question, Figure 5.4

presents the results from the treatment option question, Figure 5.5

presents the results from the risks and benefits question, and Figure 5.6

presents the results for the probabilities question.

Figure 5.3

Morbidity Vignette: Diagnosis

Doctor Oniy Most& Ooctor 60th Mostly you You oniy

Figure 5.4

Morbidity Vignette: Treatment Options

Doctor Only MosUy Doctor Both Mostly you You only

Figure 5.5

Morbidity Vignette: RisksIBenefits

Doctor Oniy Mostfy Doctor 60th Masüy you You only

Figure 5.6

Morbidity Vignette: Probabilities

-

Doctor Only Mostly Ooctor Both Mostly you You only

Table 5.3 Proportion of scores in each Control Category (Morbid ity vignette)

Control Categories

Hand Over Share Retain No.Cases k 3 ) (3) (>3)

Diagnosis 77.7% 21.7% 0.6% 286

Options 77.3% 22.0% 0.6% 287

Ris k/benefit 69.1 % 28.8% 2.1% 288

Probability 81 -8% 15.7% 2.4% 286

Similarity, the results from the mortality vignette indicate that patients do

not wish to be involved in problem solving (Table 5.4).

Table 5.4 Mortality Vignette: Problem Solving Questions

Doctor Mostly Mostly You N Item Alone Doctor Both You Alone Cases

Scen ba 175(60.1%) 89(30.6%) 25(8.6%) 2 ( 0 . 7 % ) - 291

Scenbb 1 42(49.1%) 1 07(37.0%) 38(13.1%) 1 ( 0.3%) - 289

Scen bc 122(42.4%) 92(31.9%) 70(24.3%) 4 ( 1 . 4 % ) - 288

Scen bd 122(42.4%) 1 18(41 .O%) 43(14.996) 5 ( 1.7%) - 288

Figure 5.7 presents the results from the diagnosis question. Figure 5.8

presents the results from the treatment option question, Figure 5.9

presents the results from the risks and benefits question, and Figure 5.10

presents the results for the probabilities question.

Figure 5.7

Mortality Vignette: Diagnosis

Doctor Only Mostly Doctor Both Moatty you You only

Figure 5.8

Mortality Vignette: Treatment Options

Ooctor Only Mostly Ooctor 60th M q YOU You only

Figure 5.9

Mortality Vignette: RisksIBenefits

Dactor Only Mosüy 'ooctor Mostty you You only

Figure 5.10

Mortality Vignette: Proba bilities

Doctor Only Mostly Ooctor Mosüy you You only

Table 5.5 Proportion of scons in each Control Category (Mortality vignette)

Control Categories

Hand Over Share Retain No.Cases ( ~ 3 ) (3) (>3)

Diagnosis 90.7% 8.6% 0.7% 291

Options 86.1% 13.1% 0.3% 289

Risk/benefit 74.3% 24.3% 1.4% 288

Pro bability 83.4% 14.9% 1 -7% 288

Again. the results from the quality o f life vignette compare t o that o f the

previous two vignettes (Table 5.6).

Table 5.6 Quality of Life Vignette: Problem Solving Questions

Doctor Mostly Mostly You N Item Alone Doctor 60th You Alone Cases

- -

Scenca 1 36(51.1%) 82(30.8%) 44(16.5%) 2( 0.8%) 2( 0.8%) 266

Scencb 1 OS(39.896) 98(37.1%) 56(21.2%) 5( 1.996) - 264

Scencc 84(32.2%) 91 (34.996) 80(30.7%) 6( 2.3%) - 261

Scencd 89(34.2%) 97(37.3%) 64(24.6%) 8(3.1%) 2( 0.8%) 260

Figure 5.1 1 presents the results from the diagnosis question, Figure 5.1 2

presents the results from the treatment option question, Figure 5.1 3

presents the results from the risks and benefits question. and Figure 5.14

presents the results for the probabilities question.

Figure 5.11

Quality of Life Vignette: Diagnosis

Doctor Onîy Mostly Doctor 60th Mosüy you Vou onîy

Figure 5.12

Quality of Life Vignette: Treatment Options

Doctor Only Mostly Doctor 60th Mostly you You only

Figure 5.13

Quality of Life Vignette: RisksIBenefits

Doctor Oniy Mostly Ooctor 80th Mcmtly you You only

Figure 5.14

Quality of Life Vignette: Probabilities

Doctor Only Mosüy Doctor Both Mostiy you You only

Table 5.7 Proportion of scores in each Control Category (Quality of Life vignette)

Control Categories

Hand Over Share Retain No.Cases (<3) (3) (>3)

Diagnosis 81.996 16.5% 1 -6% 266

Options 76.996 21.2% 1.9% 264

Risklbenefit 67.1% 30.7% 2.3% 261

Probability 71.5% 24.6% 3.1% 260

For the four problem solving questions we can see that patients

overwhelming want to give control to their doctor. Some patients did want

to share control, but no respondents indicated that wanted to take

complete control. The results clearly show that the majority of patients do

not want to do the problem solving but want to hand over control to the

doctor.

HYPOTHESIS III

Most Patients want to be involved in decision making

This section will deal with the hypothesis that rnost patients want to be

involved in decision making. The results for al1 three vignettes will be

presented. To reiterate, the vignettes read as follows:

The Morbidity vignette read: "Suppose you often experience a burning sensation when you go t o the bathroom. You usually have to push to begin to urinate and sometimes dribbling occurs after urination";

The mortulityvignette read: "Suppose you had mild chest pain for three days and decided that you should visit your doctor about this".

The quality of life vignette read: "Suppose you and your partner have been trying for pregnancy, but have been unsuccessful for more than a year".

Once again, the two decision making questions were:

E: Utiliry: "Civen the risks and benefits of these possible treatments, who should decide how acceptable those risks and benefits are for you?"

F: Who should decide: "Civen al1 the information about risks and benefits o f the possible treatments, who should decide which treatment option should be selected?

The response categories were: 'Doctor Only'; 'Mostly Doctor', Doctor and

you equally', 'rnostly you' and 'you only'.

Looking at the results from the morbidity vignette, we can see that

patients overwhelming want shared or to retain control for the decision

making questions (Table 5.8).

Table 5.8 Morbidity Vignette: Decision Making Questions

Doctor Mostly Mostly You N Item Alone Doctor Both You Alone Cases

- - - - - -

Scenae 24( 8.4%) 24( 8.4%) 147(5 1 -2%) 71 (24.7%) 2 1 ( 7.3%) 287

Scenaf 32(11.1%) 43(15.0%) 127(44.3%) S4(18.8%) 31 (1 0.8%) 287

Figure 5.1 5 presents the results from the utilities question and Figure 5.1 6

procents the results from the what is done question.

Figure 5.15

Morbidity Vignette: Utilities

Ooctor Only Mostly Doctor Botti Mostly you You only

Figure 5.1 6

Morbidity Vignette: What is Done

Doctor Only Mostly Dactor Both Mostly you You only

Table 5.9 Morbidity Vignette: Proportion of scores in each control category (Decision Making Questions)

Control Categories

Hand Over Share Retain No.Cases (<3) (3) (>3)

- - - - - - - - - -

Utilities 16.8% 51 -2% 32.0% 287

What to do 26-1% 44.3% 29.6% 287

Similarly, the results from the mortality vignette show that patients want

to participate in treatment decision making (Table 5.1 0).

Table 5.1 0 Mortality Vignette: Decision Making Questions

Doctor Mostly Mostly You N Item Alone Doctor 60th You Alone Cases

Scenbe 28( 9.7%) 32(11.0%) 145(50.0%) 67(23.1%) 1 8( 6.2%) 290

Scenbf 38(13.1%) 51 (1 7.696) 1 36(46.996) 37(12.8%) 28( 9.7%) 290

Figure 5.1 7 presents the results from the utilites question, and Figure 5.1 8

presents the results form the who should decide question.

Figure 5.17

Mortality Vignette: Utilities

Uoctor Only Mostly Ooctor 80th Mostfy YOU You onty

Figure 5.18

Mortality Vignette: What is Done

Ooctor Only Mosüy Doctor Both

1 O4

Mostly you You only

Table 5.1 1 Mortality Vignette: Proportion of scons in each control category (ûecision Making questions)

Control Categories

Hand Over Share Retain No.Cases (<3) (3) (>3)

Utilities 16.8% 5 1 -2% 32.0% 2 8 7

What to do 26.1 % 44.3% 29.6% 287

The fertility vignette shows very similar results to that of the morbidity

and rnortality vignettes (Table 5.1 2).

Table 5.12 Quality of Life: Decision Making Questions

Doctor Mostly Mostly You N Item Alone Doctor 60th You Alone Cases

Scence 1 7( 6.4%) 29(10.996) 1 32(49.6%) 64(24.1%) 24( 9.0%) 2 6 6

Sce n cf 3 1 1 1 6 % 28(10.5%) 1 1 7(43.8%) 56(2 1 .O%) 35(13.1%) 267

Figure 5.1 9 presents the results from the utilities question. and Figure

5.20 presents the results form the who should decide question.

Figure 5.1 9

Quality of Life Vignette: Utilities 100 1 ,

t - - ---- - - - - -- - . - - -

1 i i

80 r - -- - - - ----- - A--p--- - - - -

I

I 70 - . - - - - - -- -- l 60 C - -- . - - - --- --- - - - - *

I

Doctor Only Mosüy Doctor Both Mosüy you Vou only

Figure 5.20

Quality of Life Vignette: What is Done

Doctor Only Mostly Doctor Mostly you You only

Table 5.1 3 Quality of Life Vignette: Proportion of scons in each control category (Decision Making questions)

Control Categories

Hand Over Share Retain No.Cases (<3) (3) (>3)

- - - - -

Utilities 1 7.3% 49.6% 33.1% 266

What to do 22.1% 43.8% 34.1% 267

The results have shown that patients indeed want to hand over the

problem solving tasks, but want to have shared or control over the

decision making aspects of their care. We have shown that in light of the

problem solving decision rnaking distinction, many patients do indeed

want to be involved in decision making and do desire information.

Patients will be more inclined to hand over control to the physician in situations involving risk of mortality than those involving morbidity or quality of life.

We compared our hypothesis using the Wilcoxon Matched-Pairs Signed

Ranks Test. This nonparametric test is used with two related samples to

test the hypothesis that the distributions of two variables are the same.

The Wilcoxon signed-rank test takes into account the direction of the

differences between the pairs and the magnitude of the differences

between the two related samples. Paired t-tests were also calculated,

giving sirnilar results (see Apendix B).

To test our hypothesis we cornpared the Morbidity, Mortality, and Quality

of Life Vignettes for each item. Comparing the mean rank for SCENAA and

SCENAB, we see that mean rank for SCENAA is less than for SCENBA, and

significantly different. Thus, we can conclude that patients are more

inclined to hand over control t o their physician in the mortality situation

rather than in the morbidity situation. Comparing the rnorbidity and

quality of life scenarios for the diagnosis question (SCENA), no significant

difference between the two scenarios were found. Similar results are

indicated when comparing the other variables. The results support pan of

our hypothesis that patients will be more inclined to hand over control to

the physician in situations involving risk of mortality than those involving

morbidity or quality of life. However, we did not find any significant

difference between the morbidity and quality of life vignette for patients

desire to hand over control to their doctor. The results are presented in

Table 5.20

Table 5.20 Cornparisons across three Vignettes

MEAN RANK Z 2-Tailed p n

Mortality vs. Morbidity:

SCENAA 57.51 -5.1 71 9 .WOO 285 SCENBA 53.17

SCENAB 53.72 -3.9848 .O00 1 286 SCENBB 51.20

SCENAC 50.11 -2.9883 .O028 285 SCENBC 46.85

SCENAD 39.53 -1 -1 41 5 -2537 284 SCENBD 41.88

SCENAE 44.33 -1.9638 -0495 286 SCENBE 46.1 4

SCENAF 45.73 -3.0790 .O02 1 285 SCENBF 42 .O0

- - -

Continued on next page

Table 5-20 Continued - Cornparisons across thne Vignettes

MEAN RANK Z

Mortality vs. Quality of Life:

SCENBA 42.75 -3.3852 SCENCA 50.67

SCENBB 37.69 -4.2953 SCENCB 48.67

SCENBC 30.46 -3.602 5 SCENCC 43.35

SCENBD 41.85 -4.5583 SCENCD 44.64

SCENBE 42.38 -2.5048 SCENCE 45.71

SCENBF 40.61 -4.3763 SCENCF 41 -1 1

Morbidity vs. Quality of Life:

SCENAA 53.31 -1 S478 SCENCA 58.92

SCENAB 48.28 -0.8685 SCENCB 55.51

SCENAC 43.1 1 -1.1 024 SCENCC 52.59

SCENAD 46.1 5 -3.03 5 1 SCENCD 51.28

SCENAE 51.58 -0.6567 SCENCE 53.32

SCENAF 47.23 -1.5873 SCENCF 44.40

CHAPTER VI

COPINC STYLE

HYPOTHESIS V

Coping style will be correlated with the amount of information patients desire:

i) sensitizers will want a high level of information

ii) repressors will want a low level of information

Before embarking on a discussion o f the results it is important to clarify

the various coping groups. The Repression-Sensitization rneasure used

was the modified version of the Byrne Repression-Sensitization Scale

adopted by Weinberger et al. (1 979). Coping was broken down into four

distinct groups which characterize an individual's response t o anxiety

provoking stimuli through desire for information. Coping style was

measured on a scale that cornbined the Taylor Manifest Anxiety Scale

(TMAS) and the Marlowe Crowne Social Desirability Scale (MCSD). Coping

was measured on a scale, with the TMAS and MCSD scores split at the

mean to yield the four coping categories (also see Table 6.1):

A. true repressors (low TMAS and high MCSD) characterized by information avoidance;

B. low anxious (low TMAS and low MCSD) also referred to as effective copers who are able to handle stress in an effective manner;

C. true anxious (high TMAS and low MCSD) also referred to as sensitizers. Characterized by the seeking out of information; and

D. repressive anxious (hig h TMAS and hig h MCSD). Characterized by information avoidance.

Table 6.1 Coping Categories (Wein berger et al. 1979)

LOW TMAS

The total number of respondents in each of the coping caterogeries was:

HlCH TMAS

, LOW MCSD

HlCH MCSD

True Repressors = 78 (27.5%) Low Anxious = 59 (20.7%) True Anxious = 90 (31.7%) Repressive Anxious = 5 7 (20.1%)

low anxious

True Repressor

true anxious

repressive anxious

The relationship between coping style and other scale variables (coping

style) was studied with the aid o f analysis o f variance (ANOVA) where the

scale variables represented the dependent variables and coping style

served as independent variable. One-way analysis o f variance was applied

to test the hypothesis that coping style was related to preference for

information and desire to be involved in treatment decision making.

Based on the literature, we would expect t o f ind true repressors and

repressive anxious wanting litt le information, low anxious individuals

wanting a moderate amount o f information, and true anxious individuals

desiring a lot o f information.

The results show that the relationship between information preference and

coping style is only partly the way we originally predicted. As predicted

we see that low anxious had the highest mean score on the HOS

Information Scale, and true anxious had the lower scores. However, true

repressor had the third lowest score and repressive anxious scored the

lowest o f all; we would have expected t o find the two categories reversed

so that true repressors had the lowest mean score. With 3 and 278

degrees of freedom, an F o f 5.805 is significant at .O5 (but not at .01).

Significant differences were found between the following groups:

repressive anxious and true anxious, repressive anxious and low anxious,

true repressor and true anxious, true repressor and low anxious

(Table 6.2).

Table 6.2 Summary of Analysis of Varknce Between Coping Croups on HOS Information Preference Scale

Coping Croup N Mean SD STERR

1 =true repressor 77 2.013 7 1 6 .O82 2=low anxious 59 2.373 .667 .O87 3==true anxious 90 2.289 .707 .O75 4srepressive anxious 56 1.929 .760 -102

Source df 55 MS F Ratio F Prob

Between Croups 3 8.832 2.944 5.805 -0007 Within Croups 278 140.98 -5071

Using crosstabulation, we find that of the true repressors 24.7 per cent

indicated little desire for information, 49.3 per cent wanted a moderate

amount, and 26 per cent favoured a high level of information. Of the low

anxious we find that only 10.1 per cent want a low level of information

compared to 42.4 per cent wanting a medium and 47.5 per cent wanting a

high level of information. Again, of true anxious category, only 14.5 per

cent fell into the low category, with 42.2 per cent and 43.3 per cent

indicating medium to high, respectively. However, for those in the

repressive anxious category we find that 32.1 per cent want low, 42.9 per

cent moderate and only 25 per cent high level of information (see Table

6.3 and Figure 6.1).

Table 6.3 HOS Information Preference by Coping Style

True Low True Repressive Repressor Anxious Anxious Anxious

- ~ - - - -- -- --

Low 19 (24.7%) 6 (1 0.1%) 13 (1 4.5%) 18 (32.1%)

Medium 38 (49.3%) 25 (42.4%) 38 (42.2%) 2 4 (42.9%)

High 20 (26.0%) 28 (47.5%) 39 (43.3%) 1 4 (25.0%)

Total (n=77) (n= 5 9) (n=90) (n=S6)

chi-square-1 7.444, 6df, p=0.008, (n=282)

Figure 6.1

HOS Information Preference by Coping Style

Low Medium High

Level of Information

ElTrue Repressor ffl Low Anxious

In surnmary, we found that there was correlation between coping style and

preference for information. As expected, individuals classified as true

repressors and repressive anxious preferred a low level of information,

whereas those classified as low anxious a nd true anxious wanted a

medium to high level of information.

Hypothesis VI

Coping style will be correlated with patient preference in treatment choice:

i) sensitizers will want to be involved in treatment choice to a greater degree than npressors.

To test this hypothesis we used crosstabulations to see whether there

were any significant results. Crosstabulations were done comparing coping

style with the four Problem Solving and two Decision Making questions for

each of the three vignettes: rnortality, morbidity and quality of Iife

vignettes.

The results wil l be presented in the following manner: 1) The four Problem

Solving questions (Diagnosis, Treatment Options, Risks/Benefits, and

Probabilities) for the Morbidity, Mortaiity and Quality o f Life Vignettes; and

2 ) The two Decision Making questions (Utilitics and What is done) for the

Morbidity, Mortality and Quality of Life vignettes. For each question a

Figure will be presented; see Appendix B for the corresponding Table.

The results indicate no significant difference between Diagnosis and

Coping style and for the Morbidity, Mortality, and Quality o f Life vignettes.

See Figure 6.2 for the Morbidity vignette; Figure 6.3 for the Mortality

vignette; and Figure 6.4 for the Quality o f Life vignette.

Figure 6.2

Morbidity Vignette: Diagnosis by Coping Style

Doctor Only Mostly Doctor Shared Mostly You You Only

Control Categos,

1 Coping Category I 1 El Tnie Repressor E9 Low Anxious l 1 Elfrue Amcious E3 Re~ressive Anxious 1

Figure 6.3

Mortality Vignette: Diagnosis by Coping Style

Doctor Only Mostly Doctor Shared Mostly You You Only

Control Category

El True Repressor ffl Low Anxious

Figure 6.4

Quality of Life Vignette: Diagnosis by Coping Style

Doctor Only Mostly ûoctor Shared Mostl y You You Only

Contrd Category Coping Category

ElTrue Repressor =Law Anxious

The results indicate no significant difference between Treatment Options

and Coping Style for the Morbidity, Monality, and Quality of Life vignettes.

See Figure 6.5 for the Morbidity vignette; Figure 6.6 for the Mortality

vignette; and Figure 6.7 for the Quality of Life vignette.

Figure 6.5

Morbidity Vignette: Treatment Options by Coping Style

Doctor Only Mostly Doctor Shared Mostly You You Only

Control Category Coping Category

ElTrue Repressor Low Anxious

i=';1 True Anxious E3 Repressive Anxious

Figure 6.6

Mortality Vignette: Treatment Options by Coping Style

Doctor Only Mostly Doctor Shared Mostly You You Only

Control Category

ElTrue Repressor E3 Low Anxious

ElTrue Anxious Eil Repressive Anxious

Figure 6.7

Quality of Life Vignette: Treatment Options by Coping Style

Doctor Only Mostly ûoctor Shared Mostly You You Only

Contrd Category Coping Category

Elbe Repressor EiILow Anxious El True Anxious El Repressive Anxious

The results indicate no significant difference between Risks/Benefits and

Coping Style for the Morbidity, Mortality, and Quality of Life vignettes. See

Figure 6.8 for the Morbidity vignette; Figure 6.9 for the Mortality vignette;

and Figure 6.1 0 for the Quality of Life vignette.

Figure 6.8

Morbidity Vignette: RisksIBenefits by Coping Style

Doctor Only Mostly Doctor Shared Mostly You

Contrd Category

El True Repressor ffl Low Anxious

EITrue Anxious ES Repressive Anxious

You Only

Figure 6.9

M ortality Vignette: Risks/Benefits by Coping Style

Doctor Only Mostly Ooctor Shared Mostly You You Only

Controf Category Coping Category

ElTrue Repressor Low Anxious

nTrue Anxious EZ3 Repressive Anxious i

Figure 6.1 0

Quality of Life Vignette: RisksIBenefits by Coping Style

Doctor Only Mostly Dodor Shared Mostly You

Controi Category

EITrue Repressor L w Anxious WTrue Anxious Repressive Anxious

You Only

The results indicate no significant difference between Probabilities and

Coping Style for the Morbidity, Mortality, and Quality of Life vignettes. See

Figure 6.1 1 for the Morbidity vignette; Figure 6.1 2 for the Mortality

vignette; and Figure 6.1 3 for the Quaiity of Life vignette.

Figure 6.1 1

Morbidity Vignette: Probabilities by Coping Style

Doctor Only Mostly Doctor Shared Mostly You You Only

Contrai Category Coping Category

Ellrue Repressor Low Anxious iB! True Anxious ES Repressive Anxious

Figure 6.1 2

Mortality Vignette: Probabilities by Coping Style

Doctor Only Maçtly Doctor Shared Mostly You You Only

Control Category Coping Category

ElTrue Repressor Low Anxious

El True Anxious E3 Repressive Anxious

Figure 6.1 3

Quality of Life Vignette: Probabilities by Coping Style

( Mostly Doctor Shared Mostly You You Only Control Category Coping Category

EZITrue Repressor l3Zl Low Anxious True Anxious E3 Re pressive Anxious

The results indicate significant difference between the control categories

for the Utilities questions and Coping Style for the Morbidity, Mortality,

and Quality of Life vignettes. See Figure 6.1 4 for the Morbidity vignette;

Figure 6.1 5 for the Mortality vignette; and Figure 6.1 6 for the Quality of

Life vignette.

Figure 6.1 4

Morbidity Vignette: Utilities by Coping Style

Doctor Only Mostly ûoctor Shared Mostly You

Contrd category

ElTrue Repressor ffl Low Anxious E3True Anxious Re~ressive Anxious

You Only

Figure 6.1 5

Mortality Vignette: Utilities by Coping Style

Doctor Only Mostly Doctor Shared Mostly You You Only

Contrd Category Coping Category

El True Repressor El Low Anxious 1 El True Anxious El Repressive Anxious 1

Figure 6.1 6

Quality of Life Vignette: Utilities by Coping Style

Doctor Onll ( Mostly Doctor Shared Mostly You You Only

Coping Categoiy E3True Repressor Low Anxious E 3 True Anxious 5 Repressive Anxious

The results indicate no significant difference between control categories

for the What is Done question and Coping Style for the Morbidity,

Mortality, and Quality of Life vignettes. See Figure 6.1 7 for the Morbidity

vignette; Figure 6.1 8 for the Mortality vignette; and Figure 6.1 9 for the

Quality of Life vignette.

Figure 6.1 7

Morbidity Vignette: What is' Done by Coping Style

Doctor Only Mostly Doctor Shared Mostly You You Only

Contrd Category

EITrue Repressor 5 L w Anxious True Anxious El Repressive Anxious

Figure 6.18

Mortality Vignette: What is Done by Coping Style

Doctor Only Mostly Doctor Shared Mostly You You Only

Contrd Category Coping Category

El True Repressor ffl Low Anxious 1 El True Anaious E3 Re~ressive Anxious 1

Figure 6.1 9

Quality of Life Vignette: What is Done by Coping Style

Doctor Only Mostly ûoctor Shared Mostly You You Only

This hypothesis was not supported by the results for the four Problem

Solving questions (Diagnosis, Treatrnent Options, Risks/Benefits and

Probabilities) and one of the Decision Making questions (What is Done).

However, our hypothesis was supported for the Utilities question in both

the Morbidity vignette (chi-square=27.484, 1 Zdf, p=0.006), Mortality

Vignette (chi-square=32.868, 12 df, p=0.001) and the Quality of Life

vignette (Chi-square=ZS.I 9 5 , 1 Zdf, p=0.014).

In summary, the results did suggest some relationship between repressive

styles and treatment choice further investigation is needed.

DISCUSSION

The conceptual framework for this study was based on Deber and

Baumann's (1 989) theory of patient participation which postulates that

previous studies have made insufficient recognition of two distinct

elements of choice behaviour - problern solving (PS, identifying the one

rig ht answer) and decision making (DM, selecting the rnost desired bundle

of outcomes).

We devised a new scale entitled "The Problem Solving-Decision Making

Scale" (PSDM) to measure patients' preference for involvement in treatment

decisions. To determine content validity of the instrument, approximately

10 people were asked to judge the scope and design of the instrument.

Two methods were employed for scale validation: factor analysis and

reliability testing. Content validity of the instrument was determined. The

interna1 consistency and test-retest reliability of the PSDM scale were more

than sufficient for cornparisons of groups (Streiner et al. 1989). Factor

analysis confirmed the hypothesis that there were two dimensions to

choice behaviour; problem solving and decision rnaking.

Using this instrument, we found that patients overwhelmingly wished the

problem solving tasks to be performed by or shared with the doctor

(98.4% o f the 12 OS scores were between 1 and 3), but wanted to be

involved in decision making (78% o f the 6 DM scores were between 3

and 5).

Our results along with other published reports strongly support the

contention that patients want to be active participants in decision making

about their own care (Kassirer 1983; Arrow 1973; Cassileth e t al. 1980;

Faden et al. 1981 ; Haug and Lavin 1981 ; and Harris poll cited by Ende et al.

1989)

Our findings also indicate that patients have a strong preference for

information. Several studies have docurnented patients' desire for

information among a variety of patient populations (Blanchard et al., 1984;

Cassileth et al. 1980; Faden et al. 1981 ; and Strull e t al. 1984) and have

found that most patients report a strong preference for information and

detailed disclosure.

Our findings also indicate that there is a relationship between coping style

and desire for information. We found that individuals classified as true

repressors preferred a low level of information, whereas those classified as

low anxious and true anxious preferred a medium t o high level of

information. However, we did not find repressive anxious individuals to

want a high level of information as was expected, but rather they wanted a

low level of information. Similar results have been reported by Shaw e t al.

(1 985; 1986) and Murphy e t al. (1 989).

We also found that there was a relationship between repressive styles and

utilities question from the Decision Making subscale. Otherwise, coping

style did not explain why certain individuals wanted to hand over control

to their doctor or retain control for treatment choices.

These findings suggest two mrjor roles for clinicians - assisting the patient

in structuring the decision (e.g., the problern solving), and supporting

them in making often difficult decisions. Experts cannot determine what

value will be placed on a particular outcorne. How unpleasant it is to live

with pain, or to be forced to limit one's activities, i s inherently a personal

value judgement. But we also argue that decision making should

ultimately be the patient's job. identifying the alternatives does not always

te l l you which one should be selected.

Only a few patients wanted to retain control over probiem solving. We

found that age, sex, or coping style did not explain why certain patients

did not want to retain control over problem solving. Nor did any of the

variables explain why certain patients did not want to relinquish control to

the physician.

In summary, the following hypothesis have been evaluated and have

shown that:

Hypothesis I: Most patients want to be informed.

Supported. Our results clearly show that patients do indeed want to be

informed.

Hypothesis I I : Most patients do not want to be involved in problem solving.

Supported. Our results show that patients overwhelmingly wished the

problem solving tasks to be perforrned by or shared with the doctor.

Hypothesis I I I : Many patients want to be involved in decision making.

Supported. Our results indicated most patients wanted to be involved in

decision making. There was a statistically significant shift from doctor

control to shared control.

H ypot hesis IV: Patients will be more inclined to hand over control to the

physician in situations involving ris& of mortality than those involving

morbidity or quality of life.

Supported. Our results indicated that individuals were more wil l ing t o

hand over control t o their doctor in the mortality vignette than for the

morbidity or quality o f life vignette. However, no difference was found

between the rnorbidity and quality o f life vignette as orginally expected.

Hypothesis V: Coping style will be correlated with the amount of

information patients desire: i) sensitizers will want a high level of

information; and ii) repressors will want a low level of information.

Supported. We found that sensitizers d id want more information than did

repressors.

Hypothesis VI: Coping style will be correlated with patient preference in

treatrnent choice.

Partially supported. Our results showod a significant relationship between

repressive style and utilities. Although, the results did suggest some

relationship between repressive styles and treatment choice further

investigation is needed. One possible explanation for the finding that

coping style was not related to treatment choice is that the coping

measure itself does not measure what it intended to measure (Esterling et

al. 1993). Since so many patients wanted to be involved in problern

solving, the "normative" response may he so strong there is no variance is

le f t to be explained by coping style. When you look at the results, the data

is in the predicted direction so the negative results may be a statistical

power problem.

LIMITATIONS

As with any study. this study i s subject to methodological limitations

which need to be addressed and taken into consideration when

interpreting data. Because the research was conducted within a tirne

frame available for completion of this study certain limitations were

unavoidable.

One limitation of the study was that al1 scenarios were presented in the

same order thereby potentially biasing and confounding the responses to

the other scenarios. The impact of randornizing the order or scenarios can

not be known. In future studies, the scenarios should be presented in a

randomized order to see whether or not an ordering effect i s present.

The results may not be generalizable across other disease States. Severity

of illness rnay be a potential limitation therefore, it is necessary to study

other patient populations.

Another potential limitation arises from the coping style construct

ernployed. Do to the nature o f the scales there is a potential of

rnisclassifying patients such that patients rnay be truly low in anxiety and

high in social desirability which rnay be independent o f defensiveness.

Therefore, these patients would be placed into the 'repressed' category

which rnay not be indicative of the actual case (false positive). Conversely,

false negative patients rnay be high in social desirability and anxiety and

classified as 'defensive' but actually use 'repressive coping' (Esterling et al.

1993).

FUTURE RESEARCH

More research is needed to clarify the relationship between coping style

and patients preferences in treatment decision making. Future testing of

the Problem Solving-Decision Making scale among different patient

populations who have various severity of illness is needed. As well. the

predictive validity of the Decision Making subscale needs to be evaluated

against patients decisional behaviour.

CONCLUSION

In conclusion, we devised a new scale entitled 'The Problem Solving-

Decision Making Scale" to measure patients' preference for involvement in

treatment decisions. The PSDM scale was based on Deber and Baumann's

(1 989) theory of patient participation which identified two elements of

choice behaviour: problem solving and decision rnaking. The results

indicated that most patient's wish to leave the problern solving tasks to

their physician, but very much want to be involved in the decision making

tasks. Thus, the current ideology suggesting that patients should be

active participants in decision making about their own care is consistent

with Our findings that suggest most patients wish to be involved in

decision making. We also found that coping style was predictive of degree

of information, with true repressors preferring a low level of information,

compared to other coping groups. As well, there also appears to be a

relationship between repressive coping style and utilities component of

the Decision Making subscale. The relationship between coping style and

decision making needs to be further investigated in future studies.

APPENOIX A

Questionnaires and Scales Used in the Study

HEALTH CARE DECISIONS SURVEY: PATIENT VERSION

HEALTH CAR€ DECtSlONS SURVEY

Raisa 8. Dobor, Ph.0. Nancy Krastschmor. MSc. Candichte

YcYunich Building - 2nd Flow Toronto, Ontario MSS 1AB (416) 978-8366

n i e purpose of thh st* b to k o k i t the mk patients wirh to gky in making docision8 about th& own mediil trertment. ïho fobwing questions uk y w &out your mitudes towards pirtidprtbtg in maWng ddsionr whh your doctor about you medeai ueatmclrt. your gemd outlaok. and your wphg abilith. Thi, study b funded by 8 p t from tha Sadil M u w s wd Humanitka Fbsemch Coundl of canada.

ïh smmy rhauM onîy trke 20 minutes to complete. M the infornucion Out you @va us wüi tm kept strictly c o n t i i . Ibsults will be reponed h mregate form O*, so there wiN ôe no wry to identify yw.

For di questions. JmOly uuwer by circiing the iwnnbet cr httu that -tes the answer or op- which is mort rccwate for y w .

Nothing is more important to this study thui the confidence and coopcrath of the respondents. May we ask you to take a few minutes now to corndete the questionnaire. glace it in the envebpe, seai and return it to the nursing station.

Thank you for your participation in this study; your coopetath is greatly appteciated.

. . - - - - -

Today's Oate: 1 / Research Numkr: day mth year

d

SECTION A

In lhir section, three meôïcxt conditions rra dartnbed. Each condition is foflowtd by s o m strtements rslarsd to making decirioris- Plsasa ClRCLE t h m r m k r which best indicacas how you would tael .bout each statement if you actuaNy h.d the medical condition which is descriôed. Remember, there are no RIGHT or WRONG answers. We are interested in your opinions.

Suppose you often experience 8 burning sensation when you go to the bathroom. You usually have to push to begh to urinate and somctimtr ddôiïng occurs after urination. (WC one numbcr for each quesrion)

b. Who should dete& wilbr the treatmew @ms arrt I

c. W l i o r h o v l d & t e ~ * t k r i r i b 1 M d k n @ s * e o d c r ~ q p b n 1 are?

d Who rlbutd deterntlnc Ibw 1- Lod # ~ s e r l c b d & ~ o n t o 1

e GIwnrlirrirltrMdkn@s#rkrr posslMe treafnunts, dia s l b J d &&Ibwacccp~etlburirband 1 kw@S art*yau?

How much expmience have you had with the dinical situation described in the above scenaria. (Picase c i d e dl feuem th& q&.)

a. 1 haw h d pcrsonol qperience wih ir. b. 1 b w w offmily membtrs or close fiends who hou upcrienced it. c. 1 h4w r e d about it. d. I do not know much o b o ~ it.

Suppose you hrd mild chest pains for three days and decided that you should visit your doctor about t his. (Clde ont mrinkr for euch quesrhn.)

a. Who should dctennine (diagnose) Wh41 the liL3( causes o/your symptomr an?

6- Who sho& determine t h a t rhc rreamunr ciplilms are?

' c. Who shoufd detcnnine wihcil the ris& und ~ I I C ~ ~ I S & euch treatment oprion arc?

d. Who shodd &tenn&u how lUcïy each o / tkse ris& d bt iuf ls are to WP-?

e. GlwntlrrriribMdkn@scfthese parsiMe iTCQIIIYII## * rliodd d e c I d c h o w ~ e i I b u bc~v f ls on&pv?

doclor and you equally

- - - - - - - - -- -

SCENARIO C

Suppose you and your panner have k e n tryinq for pregnancy, but have k e n unsuccessful for more . - than a year. (CYrdc ore- rwnber for each qws6~)

a. who should determine (diagnoscJ whcu the liûeiy causes of yow condition ore?

b Wlro should detennine A- :h rreQInvnt options are?

c. Wlio shoirld dctennitw wihor the ri& a d btwfts for each neornunt qnim arc?

d. Who shoirld detennlry Ibw Iike r a d of *SC rlrb Md k W am IO

W ! ?

How much experience have you hrd with the c ü d d situation d e m i in the above scenark. (t'tcasc drde OU feüem th& qp l ' . )

a. I haw hOd prsotuû clpcriencc w?h it. 6. I know of fmiiy members or close fiends d o haw e ~ @ e ~ e d il. c. IhaureudQbOWb. d. I do nor Lnow much about ii.

1. The ne- questions ask about how vou teel about the medical crie oeopk rcceiva in generd. There - - are no right or wrong answers. WU are only interestcd in your opinions.

-

(Chdo on. numbmr for wch quostloci.)

1 b. Ilu qualfty of nudlcd care thut most ptbpk receiw codd k kt ter .

1

î l e care 1 have receivrd fioril doctors In the Iastjbv p a r s b jwc about peqeu.

1 à. are things mdiaû

L cme I have receiud rhat could k beaer.

The next questions rsk specifii8ily how you leel about the way you and your specialist (i.0. cardiologist) have made decisions about the traatment of the cardiac symptoms for which you are now secking help.

3. Which doctors have you seen about your caidiac symptoms? (Cirde dl Ietfers th& oppi")

a. Fmily dm01 b. C4rdiologist c. ClIrdioc (HCM) surgeon d. Ww, @iease specifiI:

1. I wu plemed wih how decisions wre maùe.

Strongo DIsogree

J

Disagree

2

Neither Agree nor Disagree

3

A

4

Strongl) Agree

1

S

- -- - - - - -- - --

9. Now we would Iike to know how you fed about some qeneral health related issues. There are no ripht or wrona rnswcn. We ara interested only in vour-opinionr.

a ï?u lmponant medical decisions should be ma& ôy your donor, no! by you.

b. You should go dong wi~h p u r dmor 't &CC ewn i / p u disugree with it.

M e n hospitolired, you should not be

e. Uyou w r e si& as pw Ulncrr &CMK wrse you wdiî wmt y t w dwor to t a k gre01er comrd.

J You should d e d e I i o w ~ ~ l y ywr need a check-up.

h. You should understand conlpIete& -&lrqppcfi~~-ww~ a resdt of yow Utnc#.

1. Ewn qthe n c ~ Ir &, you Jlbuld k wl1 I r J o d .

J. Yow dm01 shouîd CTplain the purpose of yow loburmoty tests.

( k. You should be jiwn in~ormruion oonly

I whcn you ask for ir. -

1. II is imponarirf'ior you ro know all the side efects of yow medIcation.

!

( m. In/ormation about your illuess Ir as imporran! to you as rreomunt.

I n. M e n rhere is more thon one merlrod ro mat a problcm. p should be rold abour eoch one.

10. Please read each staiernerit and decide whether you AGREE or MSAGREE with it. There are no ri& or won# answrs. Wt are inferesred only In yow opinions. (plcase cir& eithcr A p t or Lüsapw for each s I d c m r ~ # )

a. I vsually don 'r ad the dmor or nurse many qvcsrlons about r k y are dolng dwing a mcdlcal upni.

b. Exccpi for serious i l l ~ s s . il's generdy k n c r to r& cure of you dmi health than ro seek professional heip.

d. Insrcad of mairing f i r rhem ru tell me. I w d l y ask rhe docror or nwse immediately a#er an crom abuu my hedth.

c. It i r better ta rety on the jdgemcnts of dxiors are experts) than to reb on 'comnwn sense' In t&t care 01-yow own body.

f: ahla and hospitds on id *ces to go for help rince it 3 &srW d l c d apcns ro r a k respantîbility for hedth care.

j. Ir t bmer ta muî the &or or nwse k thttr#e #a d c d p m d ù m

may crcate morr lronn rhon g d .

1. Recowy is w d l y qulutcr d e r the care of a docror or nwse than t h e m

m. rit cosrs the same. 1 ii r a k r haw o dmor or nurse giw nu trcamcnts rhan ro do the same rrtarments myscr/:

n. I r is bcnlr to rely Iess on pliyriciuns and more on your own cornmon sense when ir coma to coring for your bsdy.

o. I uswlly wit for rhe doctor or nurse to tell me the results of a meàicd uam r&r rhan dtùing hem hwdiate!y.

p. l 'd raihcr In giwn many choices abow whaf 's k s t for my heafrh thon ro Iiaw the d m o r tmk t h e decisions for me.

SECTION C CHARACTERISTICS ABOUT YOU

Please read each statement and decide whether it is TRUE as applied to you, or FALSE 8s apptied to you. If the statement is true or mostly true of you, circle 'TRUE'. I f it is falsa or mostly false of you. circle 'FALSE'. Rcmemôer to Q ~ v ~ E YOUR OWN opinion of yourself . There is no RlGHT or WRONG answer.

1. 1 ncwr hesttate to go out of my u q tu klp sonuone in rrouble.

2. 1 w r k d e r a gretat deai of tension,

3 I A4w new i ~ense ly distiktd somcone.

4. lflnd ir lrard to Lccp my mi& am ta tarit orjob.

S. / sometfmcr feef rcse- w k n I don 3 get my own wuy.

16. 1 hove ptriods #such grau res~iessness rhor I conmi sir long in a chair.

17. I kf ieve 1 am no more nemw rhan mort 0 t h .

18. 1 sometitnes try ro ga cwn r&r rhan forgiw and forger.

19. M e n 1 don 'r kmnu sonuthing. I don 't at al1 m i d aâmining ir.

20. Li/c is a main for me much of the rime.

21. 1 am alwzys c o u ~ e o w , m n ta pop le wilro arc disagrecabte.

22. I am more sensitiw thon m m other people.

23. 1 cannoi k e p my mi& on one thing.

24. At rimes I hir reaily lnsisted on having things my own w y .

27. &re haw k e n O C C ~ ~ C M S whcn l/eIt If& smashlng rlilngs. T 1 F r

28. f 4m not unwuta& se~5onsclow. 1 T 1 F 29. 1 hau sonutimcr /el! rlbr diflcultfes w r e piling up su high rhat I could not T F

ovcrcomr rhem.

30. I um w d f y cdm a d 1101 easlly tpset. 1 T 1 F 1

J I . 1 u w l d nncr thlmû tflenlng s o m e o ~ else be punislud fw my wongdoings. 1 T 1 F T a

SECTION D

2. S u : a. M a k b. F c d e ( C i d e one I c ~ e r )

2. Year of birth: \ \ day mit year

3. Whot is your trhnic background?

4. What is your current marital status? (Circle one latter)

a. Newr marricd 6. Marrîed or cornmon-lm rtlationship c. Separated d. Diwrced e. Wdowd PLEASE N R N OVER ...

6. What ia the highert levol of educetion you hava racaived? (ad8 one fcaer)

a. S o m cfcn~ntar) , SM (y IO grade 8) 6. Cdmpleted e!enurirar)r SM c. Some high SC-

d. Compkred liigh scheol c. Some uniwrsi~y/colIcge /: Compktrd rrniursiry/cdIege 8. Som professional or grodwe SCW A. Completcd prufessionol or ~ r d u a t e SC-

a. Eqployed f i 1 1-litne (30 lrours or wwre per wtk ) b. Ehployed port-tinu c. Nor enlployed d. Retired c. Hontemzkr f. W r , @learc spccifi):

7. Typically. how often do you visit your f m doctor in 8 year (La. for eithtr check-ups or other masont)?

(ruoiibcr of t h u in ypicd yrcu)

8. Do you have chest pain? (CYidt onr IaWr)

9. Have you had an angiogmm belore? (CltrSI one krrrr)

10. Have you ever had angioplasty to open up yow ancries? (CYd. OM irdler)

1 1. Have you ever had bypass surgery to open up yow artcries? one klîef)

12. Have you had any other health/iliness problerns? ( M c one Icaer)

a. No b. Yes, pltase specifi:

13. Overall, how would you rate your health now? (Cirdt oru number)

Excellent Vcty Gsod Gnnf Fair Poor I 2 3 4 s

HEALTH CAR€ DEClSlONS SURVEY: NURSING STUDENT VERSION

HEALTH CARE DECJSIONS SURVEY

Raise 6. Deber, Ph.0. Nancy Kraetschmar, MSc. Candidat.

McMurrich ûuiiding - 2nd Flow Toronto. Onterio M5S 1 A 8 (4 16) 978-8366

The purpose of this study is to look at the role patients wish ta play in making decislons about thcir own medbl trcatment. Ths fokwkrg questbns ask you about you rîtitudes towards partictpitirig Jn making dedsions 6 t h your ôoctor about your meôical treatment, pur generd outbok, and your copina abilitks. This s t w & tunded by a orant from the SOeW Sciences ud Humanitks Research Coundi of Clnadi.

The survey should only t a b 20 minutes to complets. Al the information thrt you ive us wA ôa kept strictly c o n f i i t i d . Results wül ba reportcd in iggregate f m O*, so thcm will ba no way to Mcntify you.

For a l questions, simply answer by c i rc f in~ the number or lettw thai indikates the answer or oginion which is most accwate for you.

Nothing is more important to this study than the confhnce a d coopcration of the respondents. May we ask you to take a few minutes now to complete the questionnaire. glace it in the envelope, sei l and return it to the nursing station.

Thank you for your participation in this study; your cooperation is grcatly appreciated.

4

Today's Date: 1 / Research Number: day mth year

SECTION A

In this section. three medical conditions are described. Each condition is followed b y soma statements relstsd to making decisions, fleass ClRCLE the number which best indicates how you woufd f e d about each statement if you actually had the meûiiaf condition which is described. Rcmember, there are no RlGHT or WRONG answers. We are interestcd in your opinions.

Suppose you often experience a burninp sensation wh tn you QO to the bathroom. You usually have to push to beqin to urinate and sometimes dribbling occurs ofte; urination.

b. Who should detendne dw the neantunt opllonr are?

c. Whoshoulddetennlncnrhrrrthertb ond &IU~~IS& d h C m N on?

e. Glw~ther i rbdkn@s#theae psslbk R C Q I ~ ~ C ~ ~ I S , wiho s W d decWr how ucceproMe t h s e dsitr a d hencfirs art for yw?

J Gïwn dl tk Iqfomatîon abow rfsb and bewpts qf the potsiMe heamunts, wiho shodd decldc d i c h trtunnettî option shouîd bc selecrcd?

"1 ' and you

How much experience have you had with the clinical situation described in the above scenario. (Plrase c i d e aü leplers rchr 4pply.)

a. I haw hcd persona/ uptrience with ü. 6. I know offamily metnbers or cloreJkiends uho haw upcrienccd it. c. I haw reaâ abow it. d. 1 do not how much about if.

p~ - -

SCENARIO 8

Suppose you had rniid chest pains for three days and decided that you shoold visit your doctor about this. (Cïrde one aunbrr for euch qtustkr.)

o. Who shoutd detemine (diagnose) w h the l&ty causes of yow rympr0m.s aw?

6. Who shouid derennine w h t ht

Who shoufd detemine wlhr the risks and bcnefiis for eoch neamtnt opriosi

docror and you equally

How much experience have you hrd with the cWcd situation described in the above sceriario. (pieme &e dl luien thd 4ppIy.)

SCENARIO C

Suppose you and your oanner have bcen twinn for preonancy, but have been unsuccessfui for mare

mosrly the

doCror

mostly yod

jmrtner

a. Who should detmnint (diagmse) w h a ~ the liùely causes ofyow condition arc?

b. Wlio shudd determine wihor the rrcatnunî options are?

c. Who should detennint wihor the nsb and bencjit~lor CO& i r e ~ i r r option are?

How much exptnence have you had with the clinical situation described h the above scenario. (Pieare d d c dl Ieaem tha 0ppry.J

4. 1 h w had pcrsonol cypcrience with it. 6. I h w of fmily members or close /ncnds wha haw experienced it- c. f haw r e d obow if. d. I do not know much about it.

SECTION 6

1. The next questions ask about how you feel about the medical care people receive in qeneral. There are no right or wrOng YUWCIS. We are only interested in your opiniork.

-

(Circla m a numkr for œdm questiott.1

a. Cenerally, ptofle are satl@cd wlwlth the medical care they recelte. 1 2 3 4

b. & qudity of medicd c m thar most people receiw couid bc btner. 1 2 3 4

C. carc r hou rcceiwdpom docrors in the last/nu y e n & jwt 1 2 3 4 aboui ixden.

p~ - -

d. flu care I haw reuhrdjkn nurses in t k last* yats is/w &ut pcgect.

2. Which stitemtnt ks t describes yow own attitude towards meâilcrl care? (PIe-c dndr rlir wrwpnb& f e r . )

a 7)ic pntiem slbvld t& &ete ctmtrd. b. 7he potlrnt rlbvld h m morr contrd than tk domr. c. 7he paient Md h o 1 shovld s h r e the ccmtrol equally. d. The docttw M d haw more conrrd t h the paientN e. Inr dmor slbvld t& coqdete corilrd. j #her,@lease spccifi):

3. Which srorement bcsr describts yow own attitude i m r d s the rde nurses should play in decision making? (PIcare cirdc rhe cippmpMIe feüer.)

a. 7he nurse should bt respomible for decision mahing. b. ïRe nurse should be inwlwd at the decision mab'ng hul. c. 71u nurse should largcly bt concerntd with implemcnring the decisions of ofhers. d. ïk nurse should be more concerned wirh the opra t ioml aspects of purient care than with dtcision

making. e Orher, @case spcilj.):

\

4. Now w noufd likt to bww how you f ie l &ut sorm gentrai k a l t h relaced issues. Tlure arc no rlght or wrong anncrrs. We are INCICS~&! O& in pur opini&. ( C i d e one nwnber for each qrurtion)

r Strongly Disagree

Ncirhcr Agree no? Disagree

Strongfy Agree Disagree Agree

'fhc Unponant mcdicd dccisions should k made by your docior, not by

b. You shoufd go dong with yow d m o r 'I tuivice cwn Uyou disagree with if.

c. Wlim hospitdizcd. you slwdd not k mukinn decirions &w mur own c m .

d. You shouid fcdfiec to maûe declsionr about ewryday nudicd pobiemr.

~ - --

f: You shavld &&te howfiquedy pu nted a check-rqp.

I tdd more a d m e &ut ywu Ulriut.

Ewn ~thtruwrishd,yousl iouldk 1 " rrll lnl-d.

1 k You shouid bt g iwn information only when you as& for it.

1 I . /t is impo~arufior you to know al1 the

I side cffects of your medication.

1 m. Information about your illness ù as

I importaru IO you as treamunt.

I n. Whcn A m is more than one n u t h d to treat a probfcm, you shoufd & t d d about each one.

10. Please read each statemcnt and decide wheiher you AGREE or DISAGREE with it. Tlure are no riglu w wons amwrs. We are Interested onty in yow bpinions. (Please ctCtrcle eaher A p e or magrte for each stdement)

a. I u s d y don 1 os& rhe doaor or nurse many quesiionr about r h q are doing during a medicd u ~ i .

b. f icept /or str iow Ukss. i l 's generaNy k t te r to r a k care ofyou own k d ~ h than IO seek professionol klp.

- - - - -- - - -

c. I 'd rorhcr haw d0~1ors and nurses make the decisions about wihar 3 &sr rhan for t h to g i u me O whdc lot of chices.

d. Insread of w i t i ng for rlCun ro reli nu, I wuaity osk r k docror or nurse immcdiateiy a#tr an uoin abou my hedrh.

e. Ir is btner IO rely on the Judgenurils o fdb~~ors (iuho are the crprns) rhan to rely on 'counmon sense' in iuùint c m of your own W.

I than ro question tduu rlCL)I are d*.

k Lroming hUw to cure s m e dyow IfInus w i f h tontacting a physlcian may create more honn t h g d .

i. Recowry is usually qui&r d e r the cure # a dmor or nurse t h w k n polienrs t& care of themseIws.

1 n. I r is bencr tu rely Iess on physiciens and more on your own common sense

C whcn i r cornes to carïng for your body.

1 o. I wrrally *oit for the dmor a nurse to tell n e the resulir of a medical uatn

I rarher rhan usking t k m ùnmtdiately.

1 'â rarher k giwn many choices cbow W * s best /or my healrh rhan ro 1 han the docror ma* the decidons for me.

SECTION D

Finaily, w wuld l ik to ask you swne questions &ut yow ôacùground.

2. Year of binh: \ \ day mrh year

3. Whnl ir yow eihnic background?

4. What is your current marital status? (Cird. one ktîar)

a. N w r tnarried b. Mam'ed or common-law rcluionship c. Sepratcd d, Diwrced e. Wdoued P U A S E TURU OVER ...

What is the highest kvel of education you have received? (Cide one Ietier)

Typically. haw often do you visit your family doctor in a year (Le. for either check-ups or other reasonsl?

(n&r o/times in rypical year)

Overall, how would you rate your health now? (Circlc one nwnber)

Ercclferu Very Goad G d Fair Pcwr 1 2 3 4 5

I mis is che end of thc questionnaire. 'Ilrad you wty much /or your parriciporion.

HEALTH OPINION SURVEY

980 D s KR.4372, A B.4L:M. ASD M WlDEM.4S

T a b l e I I k m s a-d Sbf~rfur jar ~ h e Kronrt Healtrl Optnron S u n e ?

I usually don2 ask t h t d a i m or nurw many questions about vhat thcy'tc doing durrna r medical e u m . (1).

l'd nthcr have doctors and nurses m r k r the dtcirions about what'r b a t ihan for thcm 10 (ive m e a whok lot d choiccs. (31.

l n u u d of vaiting for thtm to tell me. 1 urually ark t hc d a c o r or n u n immediately d t e r a n e u m aimut my hcalth (41

1 usually ark the doctor or nunc brr of qucrriorir about the p r d u r e , during i m c d i u l exam. (8)

I t i~ k t t e r t o t m u t b t dator or n u r r in charge d a medical procedure thrn to question what thcy ut k i n g . (10).

1 usually va i t l a the Qcra or nurw t o tell m t t h e r t ru l t r d a medical uun -cher than aiking t h t m inrmdiatcly. (1 5).

r d m h e r k givtn -y choices about rha t ' r ôert for my health than t o have the doctor make t h e dtciiiona for me. (16)-

- - -~ -

& h r v i o d Invotvtment r u b l a k

Excrpi for d o u s Un- iter gcncrally k t t e r t o takt wt d p u r own b u l t h than t o u k prd-orid bdp. (2)

1t in k t t e r to rely on tk jcidgcmcntr d doetors (=ho are t h e e x p n r ) than t o rely on "cornmon w n r " in trking u r c d p u r own body- QP

Oinics and horpi tds are pod phmn to go lœ k l p rina i?s &sr /a iridrd

aws & && rrspors;bJdy l a health a r c . (6). L u r n i n g hor to cure nome d pour o v n iltncw r i t h o u t coritacting r phpician Y a gord idta. (7)

It'r Jmort Jwaya br t t e r t o w k p r d n r i o n r l help t h a n to ty t o t r u t puruIf. (9)'

karning hor to cure morne d your illnev vithout contact int a phyritian iruy -te mœe bum Chan good. (II) .

Rnwcry in uwally qukker unâer the u r e d r &or or rurw than d e n prient6 ukc a r e d iIcris&s. (12).

U ir tort6 t)n ume, l'd r r th t r have r daetor or nurne *ve me t r u t m e n t r rhan to do t h e m m t m t m n t a m p l f . (13).

l t u k t t e r ro rely km on pbysicians and more on your o v n common w n r wbtn it Lomu to &ng for p u r body. (14)

-

Nok. Cohelationi arc point-biscrial item-temainder correlations bvd on 200 o w r . T h t x correlation, am d l p i t i v e because woring im r c n r u d foi ncgativcly rorded items. vhich arc dtnot td by ruptrscript r'r h ' u m k r s in parentheses i n d i o i e the wqucnce d i tems on the -le. Verbatim instructions may k obtained from the first ruthor.

Xegatively worded item.

in mtdical crrc. The xcoad scak, d l t d I i i jonrot ior (1). u dt6ncd by w w n items mtuwing Lbt &in IO uk questions and wrntina to k inforrnrd about mtdio l dtcisions Remaining i t t m not cornlrting vi tb cithtr of th- scrks wert clirninrted. 7 à c h n d \-toion of iht i a t , crllrd ùie Krrata H d t h Opiqion Survty (HOS). tbtrtlorc coiuiitr of 16 i t e m . crch r a i d in r binuy, rgreedisr8rce format. The test yit- 8 ~ r i o d - n i b o l e s and

-a total score merrurint compaùtc at t i tude t o d trtrtmrnt rpplo&hes W b x o r u u p r o l o t laver-

I

r b k attitudes iowrrd xlf-dirtcied œ inforwd trut- ment. II shouM k aottd tbrt tbcu i t e m pmraDy rcftr to routine u p c î s of media1 u r r rad do W rcfer t o wvrrt or triumrtk 9 m s . 18 rdditiaq future rc6nmtn t of ibc rcak mry require r b b - tion ot rome rcdundrncy in tbt r d* ol tb r i tem.

70 drirrmint dkriminrnt vfity, t b t t m ru then rdministercd Io 100 male i a d 100 f c d undcmraduatt~ r t the University of Sou tbcr~ C.b'- fornia togeibcr rith tht Crornc-Marlowe

REPRESSION-SENSITIZATION SCALE

P a t l e n t Number -,,,---- Date ,-------

P A T 1 €NT I NVENTORY

I n s f ~ u ~ ; f l ~ n s : T h i s l n v e n t o r y c o n s l s t s o f t h r e e p a r t s , e a c h w i t h separa te I n s t r u c t i o n s .

PART I R e a d e a c h s t a t e m e n t and d e c l d e w h e t h e r i t 1s f ~ u a ns a n ~ l l e d &QU, or f d l S e an a o n l l a d la XQU. Then c i r c l e e l t h e r t h e T ( f o r t r u e ) o r t h e F ( f o r f a l s e ) I n t h e c o l u m n o n t h e r l g h t . E e n e p h e ~ t o g l v e YOUR OWN o p i n i o n o f y o u r s e l f. Please t r y t o a n s w e r e v e r y

/ q u e s t i o n e v e n I f y o u h a v e t o g u e s s . You may f e e l t h a t a q u e s t i o n d o e s n o t a p p 1 y e x a c t i y t o y o u - p l e a s e t r y t o answer There I s n o r l g h t o r wrong answer.

1. 1 never h e s i t a t e t o go out of my r a y t o h e l p sonieone I n t r o u b l e.

7 '* I work u n d e r a g r e a t deal o f t e n s l o n

M J * l have never i n t e n s e l y d l s l l k e d sorneone

4 . l f l n d l t hard t o k e e p my mlnd on a tesk o r Job.

S. 1 sometlaes fuel r c s e n t f u l when I don ' t g e t my oun ray . .m.-

6. 1 a i c e r t a l n l y l e c k l n g I n s e l f - c o n f Idence.

7 . 1 am happy caost o f t h e t lm.

th I Ilke t o goss lp a t t l m e s .

0 CI) 9 . T h e r e have been t l m e s when I f e l t Ilke r e b e l l i n g a g a l n s t people I n a u t h o r l t y evem though I knew t h e y were r l g h * .

( 0 . I c a r t a i n l y f e e l u s e l e s s a t t l m e s .

.: 1 . 1 can renenber " p l a y i n g s l c k n t o g e t o u t o f somethlng.

There have becn o c c a s i o n s when I t o o k advantage ' 1 2 * o f soneone.

13. I ' m aiways r l i l l n g t o a d m i t l t when I t v e nade a mlstake.

I t anyway.

T 1 4 . 1 f r e q u e n t l y f l n d myself r o r r y i n g a b o u t somethlng. @ rC\ 15 . I always t r y t o p c a c t i c e what I preach. 0

16. l have p e r l o d s o f such g r e a t r e s t l e s s n e s s t h a t I canno t s l t l o n g I n a c h a l r .

Cr 1 7 . b e l l e v e I am no more nervous than most o t h e r s .

I sometlmes t r y t o g e t even r a t h e r t h a n f o r g l v e f"l l e - an, f o r g e t .

9 When I d o n ' t know somethlng. I d o n ' t a t a l 1 mlnd a d m i t t l n g I t .

20. L i f e I s a s t r a l n f o r me nuch o f the t l m e .

fi 21. 1 am a l r a y s cou r teous . even t o peop le w h o a r e d i sag reeab le.

22. 1 a i more s e n s l t i v e t h a n most o t h e r p e o p l e .

23. 1 canno t keep my m l nd on one t h lng .

pC(24. A t tlnes I have r e a l t y I n s l s t e d on h a v l n g t h l n g s my o r n way.

I f e e l a n x l e t y abou t somethlng or soneone a l m o s t 25* 81 1 th. tlu.

T 26. 1 am t n c l l n e d tp t a k e t h l n g i hard,

n\ 27. There have been occasions when I f e l t I l ka smashlng t h t n g s .

28. 1 a i n o t unusua l l y se l f - consc lous ,

29. I have sometlmes f e l t t h e t d l f f l c u l t l e s were plllng up so h l g h t h a t I c o u l d not overcome them.

T JO. I am u s u a l l y c a l m and n o t e a s l l y u p s e t .

3 1 I r o u l d never t h l n k o f l e t t l n g soneone e f s e be pun i s h e d fo r my urongdo l ngs.

32. A t t l m e i I t h l n k I a m no good a t a l l .

p 33. I n e r e r r a s a n t b e l ng a s k e d t o r e t u r n a f a v o r .

4 I have never been l r k e d when people e x p r e s s e d ldeas v e r y d l f f e r e n t fcom my own.

T 3 5 . 1 a m a h l g h - s t r u n g person. , 36. There have b e e n t i m e s rhen I r a s q u l t e j e a l o u s o f t h e good f o r t u n e o f o the rs .

7 37. 1 s h r l n k f r o n f a c l n g a crlsls o r d i f f l c u l t y .

r 39. 1 s o n s t l n o i l c e l t h e t 4 a m a b o u t t o go t o p l e c e i . F

(y\ 40. 1 have n e v e r d e l l b e r a t e l y s a l d s o m e t h l n g t h e t h u r t someone's f e e l lngs. O

AUTONOMY PREFERENCE INDEX

1 . I'm very s a t i s f i e d u i t h the mcdicrl c a r e 1 r e c e l v e .

2. Most people r e c e i v c mebicrl c i r a that cou ld bc b e t t e r .

3 , The c i r e 1 have rece iveâ from d o c t o r s i n the l a r t few years is j u s t about perfcct,

4 . There a r e chinqs aboiit the rneàical care 1 receive that cou ld be better.

Strongly Disagram

0

01

cl

Stronqly Aqree

PACE 3

8. The important medical declriona should ba made by the doctor, not the patient.

9. Patients should go along 4 t h the daceor's rdvice evtn i f thsy disagree with At.

10. Hospit~lized patients should not be mrking decisions rbout t h d r ovn medical csre.

11. Patients should fecl fret to make deciriona about everyday medical probl ems .

12. Patients should not makc decisions about a problem which might be life-threatening.

13. I f you were s i c k , as your illness becamc uorse , you would want the doctor to cake qreatet control .

. SECTION I I

S t rongly Diragroo

14. Patients should decide hou frtquently they need a check-up.

15. As patients become sickor, they should be told more and more about their illness. 0

16. Patients should understand completely what 1s happening inside thelr bodies as r rcsult of their Allnons.

17. Even if the news is bad, patienta should ba uell i n f o m d . u

18. Doctors should ewplain the purpose of laboratory tests.

19. Patients should be given informa- tion only whcn thay ask for At. n

20. It Ls important for patients to know all the side effects of their medication.

21. Informlng 4 patient lm 4s important as trerting him. 11 u

22. When thete is more than one method to trcit a problem, the patient should be told about cach one. II

N d thor Agroa Nor Diragree

PAGE 4

SC rongly

PACE 5 a

PLEASE CHECK THE BOX WHICH INDICCITES HOW YW mnrto AsoüT W STATU(eNT Ir YOU ACrVALLY HA0 TItE HEDICAL PROBLEH WHXCII IS DESCRJBED.

'Ihr Poctor And You nostly The The Doctor

You Alone M O i t l y You bQri.tl~ boctor Alone

23. Whether you should be seen by the doctor.

24. If a chest X-ray should be trken.

25. I f you should stay home Zrom uork.

26. I f you should try trking cough syrup.

SECTION I I I

. PAGE 6

a. SUPPOSE YOU WENT TO THE OOCIOR FOR A wwrxm Pwrsrw, ~ N C I T I O N MD HE OR SHE FOUND MAT EVERYTI~INC WAS ALL RXCHT EXCEPT TMAT YOUR BlMlO PRlFSSURL W A S HXoi (17O/lOO). WHO SMouLP M U 1HE F O L W I N G DEClSlONS?

Th. boctor And YOu l iort ly The The Ooctor

You Aloiu motly You Dqurlly ~octor Alone

27. When the newt v i s i t to check your blood pressura should k.

28. Whethtr you should takt r o m cime off from work to re;ar.

29. Uhcther hboratory tests rhould be donc,

30. Whethcr you shou1d be treated w i t h madication or d h t .

31. Whethtr a s p e c i a l i s t i n high blood pressure rniqht be h t l p f u l .

* PACE 7

C. SUPPOSE YOU HAD AN ATTACK OF SEVeRE CHEST PAIN WIiM LASr#) IDR UnOST AN HOUR, PRICHTENINC YOU ENOUGll SO TWAT YOU WEHT TO THE EIiERGENCY ROOU. IN TliE EHE#IPrcu iwm TilB m m D1s-R M T WU ARE HAVINC A HEART ATTACK. YOUR OWN DOC?DR IS CULED IN AND YOU ARS T m UP 'K) I m s m au WfT;

WHO SHOULD HAKE THE FOLIXIWINC DECXSIOHS?

32. Hou of ten the nurses should uake you up to check. yout fempetature and blood p r e s a u r e . . .

33. Whether you -y have visitors aride from your imncdiate fsmily.. .

34. Whethtt a h a r t specialist (crrdio!oglst) should be consulteci.. .

m r t l y ~ h e The boctor I)octor Alone

PACE 0

D. SWPOSE IT IS NOW ?UO WEEKS AFT'ER YOüR HEART A T T X K . YW SmLL IN THE HOSPITAL, WAITING TO (;O IiOHE. -

Tho Doctor And Yeu no i t ly ma ~ h e mctor

YOu ~~ Moitly YOu b p ~ l l ~ h c t o r hlone

35. When you w i l l be ready to 90 hons. 4 Li

36. When you 411 be ready to go b c k to your usual actlvitlei. U O ' O O cl

37. Whethtr i t is necessary for you to gfve up an activlty which you really enjoy.

' SECTION I V PACE 9

THE NEKT F I V E QUESTIONS REFER TO YOOR EXPtRIL)(GS WlTH -1CAL Chm.

38. In your mort recent exptrience ui th the doctor you have just seen, ,

hou much d i d you prrtlcipate in the deciiions that uere made?

II II II 39. When you are vel l , hou much do

you uant t o participate i n the medical decislons that are made?

40. ühen you get sick, hou much do you wrnt to participate in the medical decisions that are made?

41. Whcn you are scriously i11, hou much do you want to partlcipate An the medical decisionr that are made?

A Great ûerl

ühich statemcnt best describca your oun at t i tude towrrdr iwdlcil car07 (Pleaie choosc one).

42 . The patient should The patient should ni8 patient and Th. doctor rhould The doctor should Cake complete control. have moto control doctor M d 8- have more contra1 trkc complete

than the doctor. thrcontrolwpmlly. t h . n t h a p . t i e n t . control .

APPENOIX B

Statistical Analysis

CHAPTER 3

SCALE DEVELOPMENT

FACTOR ANALYSIS

Intercorrelation matrix for a11 18 problem solving and decision making items

Continued - intercorrelation matrix for al1 18 problem solving and decision making items

ltem BE

Morbidity Vignette: Unrotated Solution

Initial Principal components matrix, for rnorbidity vignette

Item Factor I Factor II Eigenvalue Var % Communality h2

SCENAA -500 -.586 2.5632 42.7 1 .O00 SCENAB -689 -.264 1.281 4 21.4 1 .O00 SCENAC .81 O 4 7 3 7 7 0 3 12.8 1 .O00 SCENAD .762 -.l 18 .S654 9.4 1 .O00 SCENAE -568 .646 .4802 8.0 1 .O00 SCENAF -529 .638 .3395 5-7 1.000

Mortality Vignette: Unrotated Solution

Initial Principal components matrix, for mortality vignette

Item Factor I Factor II Eigenvalue Var % Communality h2

SCENBA .632 -.264 2.7692 46.2 1 .O00 SCENBB ,777 -.278 1.2060 20.1 1 .O00 SCENBC -802 -.188 .7408 12.3 1 -000 SCENBD .74S -.268 .4674 7.8 1 .O00 SCENBE .5 16 -71 O .4552 7.6 1 .O00 SCENBF 5 4 9 -669 .3615 6.0 1 .O00

Quality of Life Vignette: Unrotated Solution

initial Principal components matrix, for quality of life vignette

Item Factor I Factor Il Eigenvalue Var X Communality h2

SCENCA .643 -.287 2.8068 46.8 1 .O00 SCENCB .7 76 -.232 1.3548 22.6 1 .O00 SCENCC .771 -.307 .7177 12.0 1 .O00 SCENCD .790 -.2 30 .4624 7.7 1 .O00 SCENCE .544 ,726 .3 506 5.8 1 .O00 SCENCF .526 .738 -3078 5.1 1 .O00

Nursing sample: Paired T-tests

Variable

DSCENAA DSCENAB DSCENAC DSCENAD DSCENAE DSCENAF DSCENBA DSCENBB DSCENBC DSCENBD DSCENBE DSCENBF DSCENCA DSCENCB DSCENCC DSCENCD DSCENCE DSCENCF

CHAPTER 5

PARTICIPATION IN TREATMENT CHOICE

HYPOTHESIS #5 PARAMETRIC TESTS

Paired t-tests Scenario A, 8, C - - - - - - - -

Variable Mean Std Error T Prob>JTI

AVSBA AVSBB AVSBC AVSBD AVSBE AVSBF

AVSCA AVSCB AVSCC AVSCD AVSCE AVSCF

BVSCA BVSCB BVSCC BVSCD BVSCE BVSCF

CHAPTER 6

COPtNC STYLE

HYPOTHESIS # 5 NON-PARAMETRIC EQUIVALENT

Summary of Krushel-Wallis One Way Analysis Between Coping Style and Krantz Information

Mean Rank Chi-Sq. df P

1 = true repressor 126.02 16.3575 3 .O01 O 2= iow anxious 163.42 3= true anxious 154.89 4= repressive anxious 118.16

HYPOTHESIS # 6

Tables correspond with Figures presented in the main body of thesis.

Table 6.4 Morbidity Vignette: Diagnosis by Coping Style

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

--- - - .

Doctor Only 42 (53.8%) 29 (50.096) 31 (35.6%) 22 (40.0%)

Mostly Doctor 23 (29.5%) 19 (32.896) 31 (35.6%) 17 (30.996)

Shared 12 (1 5.4%) 10 (17.2%) 2s (28.7%) 1 5 (27.3%)

Mostly You ---- ---- ---- 1 ( 1.8%)

You Only 1 ( 1 3 % ---- ---- ---- Total (n=78) (n=58) (n=87) (n=SS)

Table 6.5 Mortality Vignette: Diagnosis by Coping Style

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only 54 (69.2%) 31 (53.4%) 50 (59.6%) 34 (59.7%)

Mostly Doctor 20 (25.6%) 24 (41.496) 27 (30.0%) 17 (29.8%)

Shared 4(S.2%) 3(5.2%) 11(12.2%) 6(10S%)

Mostly YOU ---- _-__ 2 ( 2 . 2 % ) ----

Total ( ~ 7 8 ) (n= 5 8) (n=90? (n=57)

Table 6.6 Quality of Life Vignette: Diagnosis by Coping Style

Coping Category

Control True tow True Repressive Category Repressor Anxious Anxious Anxious

Ooctor Only 38 (54.3%) 29 (53.7%) 40 (46.0%) 22 (45.8%)

Mostly Doctor 20 (28.6%) 16 (29.696) 28 (32.3%) 18 (37.5%)

Shared 11 (15.7%) 9(16.7%) 17(19.5%) 7(14-6%)

Mostly You ---- ---- l ( l . l % ) l ( l . l % )

You Only 1 ( 1 .4%) ---- 1 ( 1 1 % ----

Total (n= 70) (n=S8) (n=87) (n=48)

Chi-square=5.75 3 , l Zdf,p=0.928, ( 1 ~ ~ 2 5 9 )

Table 6.7 Morbidity Vignette: T reatment Options by Coping Style

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only 38 (48.7%) 21 (35.6%) 31 (35.3%) 22 (40.0%)

Mostly Doctor 25 (32.196) 28 (47.5%) 37 (42.0)6) 13 (23.796)

Shared 1 4 (17-9%) 10 (16.996) 20 (22.796) 19(34.5%)

Mostly YOU 1 ( 1 .3%) ---- ---- ----

You Only ---- ---- ---- 1 ( 1.8%)

Total (n=78) (n= 5 9) (n=88) (n=55)

Chi-square=22.825, 1 5df. p=0.088, (n=280)

Table 6.8 Mortality Vignette: Treatment Options by Coping Style

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only 45 (57.7%) 28 (49.1%) 37 (41.1%) 24 (42.9%)

Mostly Doctor 24 (30.8%) 23 (40.4%) 40 (44.4%) 21 (37.5%)

Shared 9(11.5%) 6(10.5%) 12(13.4%) 11 (19.6%)

Mostly YOU ---- ---- 1 ( 1 1 %) ---- You Only ---- a---

---- ----

Total (n=78) (n=57) (n=90) (n=56)

Chi-square=9.138, 9df, p=0.424, (n=283)

Table 6.9 Quality of Life Vignette: Treatment Options by Coping Style

~ o p i n g Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only 30 (42.9%) 23 (42.6%) 32 (37.3%) 16 (34.1%)

Mostly Doctor 23 (32.8%) 24 (44.4%) 3 1 (36.0%) 1 9 (40.4%)

S hared 16(22.9%) 6(11.1%) 21 (24.496) 1 1 (23-4%)

Mostly You 1(1.4%) 1 (1 .9%) 2(2.3%) 1(2.1%)

You Only ---- -a-- ---- -O-_

Total (n=70) (n=54) (n=86) (n=47)

Chi-square=S.447, 9df, p=0.793, (n=257)

Table 6.1 0 Morbidity Vignette: Risks/Benefits by Coping Style

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only 34 (43.6%) 19 (32.2%) 2s (28.4%) 14 (25.5%)

Mostly Doctor 22 (28.2%) 27 (45.8%) 29 (33.0%) 24 (43.6%)

Shared 21 (26.9%) 13 (22.0%) 31 (35.2%) 1 5 (27.3%)

Mostly YOU 1 ( 1.3%) ---- 3(3.4%) 2(3.6%)

You Only ---- -O*- ---- ----

Total (n=78) (n=59) (n=88) (n= 5 5)

Table 6.1 1 Mortality Vignette: Risks/Benefits by Coping Style

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only 38 (49.4%) 22 (37.996) 34 (37.8%) 22 (40.0%)

Mostly Doctor 23 (29.996) 24 (41.496) 26 (28.996) 19 (34.596)

Shared 16 (20.8%) 12 (20-7%) 27 (30.0%) 13 (23.6%)

Mostly You ---- O-w- 3 (3.3%) 1 (1.996)

You Only ---- ---- ---- ----

Total (n=77) (n=58) (n=90) (n=5 S)

Chi-square=9.815, 9dfl p=0.366, (n=283)

Table 6.12 Quality of Life Vignette: Risks/Benefits by Coping Style

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only 26 (37.1%) 17 (31 -5%) 24 (28.6%) 13 (28.3%)

MostlyDoctor 2 5 ( 3 5 . 7 % ) 21(38.996) 28(33.3%) 16(34.8%)

S hared 18 (25.7%) 1 5 (27.8%) 29 (34.5%) 16 (34.8%)

Mostly You 1(1.4%) 1(1.9%) 3(3.6%) 1 ( 2 . 2 % )

You Only ---- ---- O--- ----

Total (n= 70) (n=S4) (n=84) (n=46)

Ch i-square=3.594, 9df. p=0.936. (n-2 54)

Table 6.1 3 Morbidity Vignette: Probabilities by Coping Style

Coping Category

Control True Cow True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only 33 (42.996) 26 (44.1%) 30 (34.5%) 16 (29.1%)

Mostly Doctor 32 (41 -6%) 25 (42.4%) 36 (41 -4%) 29 (52.7%)

Shared 12 (1 5.6%) 7 (1 1 -996) 16 (1 8.4%) 9 (1 6.4%)

Mostly You ---- 1 ( 1.796) 5 ( 5.7%) 1 ( 1.8%)

You Only ---- ---- ---- ---- Total (n=77) (n= 5 9) (n=87) (n= 5 5)

Chi-square=10.489, gdf, p=O.3 1 2 , (n=278)

Table 6.14 Mortality Vignette: Probabilities by Coping Style

Coping Category

Controi Truc Low True Repressive Category Repressor Anxious Anxious Anxious

- - -

Doctor Only 37 (48.1%) 26 (44.8%) 32 (36.0%) 21 (37.5%)

Mostly Doctor 29 (37.7%) 25 (43.1%) 36 (40.4%) 26 (46.4%)

Shared 11(14.3%) 7(12.1%) 16(18.0%) 9(16.1%)

Mostly YOU ---- ---- S ( 1 .6%) ----

Total (n=77) (n-58) (n=89) (n=S6)

Table 6.1 5 Quality of Life Vignette: Probabilities by Coping Style

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only 22 (32.4%) 21 (38.9%) 29 (34.1%) 13 (28.3%)

Mostly Doctor 31 (45.6%) 23 (42.6%) 26 (30.6%) 1 5 (32.696)

Shared 1 4 (20.6%) 1 0 (18.5%) 23 (27.1%) 16 (34.8%)

Mostly YOU 1 ( 1 -5%) ---- 6 ( 7.1%) 1 ( 2.2%)

You Only ---- ---- 1(1.2%) 1(2.2%)

Total (n=68) ( n 4 4 ) (n=8S) (n=46)

Chi-square=l5.949, 1 Zdf, p-0.193, (n=253)

Table 6.1 7 Morbidity Vignette: Utilites by Coping Style

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only 9(11.5%) ---- 4(4.6%) 8(14.5%)

Mostly Doctor 8 (1 0.3%) 2 ( 3.4%) 10 (1 1.5%) 3 ( 5.5%)

Shared 37 (47.4%) 3 4 (57.6%) 43 (49.4%) 30 (54.5%)

Mostly You 19 (24.4%) 13 (22.0%) 27 (31.0%) 12 (21.8%)

You Only S(6.4%) 10(16.9%) 3(3.4%) 2(3.6%)

Total (n=78) (n= 5 9) (n=87) (n=55)

Table 6.1 8 Mortality Vignette: Utilites by Coping Style

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only S(6.4%) 1(1.7%) 9(10.0%) 10(17.9%)

Mostly Doctor 1 3 (1 6.7%) 4 ( 6-996) 1 1 (1 2.2%) 4 ( 7.1 %)

Shared 37 (47.4%) 36(62.1%) 39(62.1%) 31 (55.4%)

Mostly You 20 (25.6%) 8 (1 3.8%) 28 (31.1%) 9 (1 6.1%)

You Only 3 ( 3.8%) 9 (1 5.5%) 3 ( 3.3%) 2 ( 3.6%)

Total (n= 78) (n=58) (n=90) (n=56)

Chi-square=32.868, 1 Zdf, p=0.001, (n=283)

Table 6.1 9 Quality of Life Vignette: Utilites by Coping Style

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only 3 ( 4.2%) 1 ( 1.996) 6 ( 6.9%) 5 (1 0.6%)

Mostly Doctor 1 3 (1 8.3%) ---- 1 3 (1 4.996) 3 ( 6.4%)

Shared 33 (46.5%) 33 (61 -1%) 38 (43.7%) 27 (57.4%)

Mostly You 1 s (21.1%) 11 (20.4%) 25 (28.7%) 10 (21.3%)

You Only 7 ( 9.9%) 9 (1 6.7%) 5 ( 5.7%) 2 ( 4.3%)

Total (n=71) (n=S4) (n=87) (n=47)

Table 6.20 Morbidity Vignette: What is done by Coping Style

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

-

Doctor Only 12(15.4%) 2(3.4%) 7(8.0%) 10(18.2%)

Mostly Doctor 1 7 (2 1.8%) 8 (1 3.6%) 1 5 (1 7.0%) 2 ( 3.6%)

Shared 33 (42.3%) 31 (52.5%) 31 (35.2%) 30 (54.5%)

Mostly You 10 (12.8%) 13 (22.0%) 21 (23.9%) 8 (14.5%)

You Only 6 (7.7%) 5 (8.5%) 14 (15.9%) 5 (9.1%)

Total (n=78) (n= 5 9) (n=88) (n=S 5)

Chi-square=25.947, 1 Zdf. p=0.011, (n=280)

Table 6.21 Mortality Vignette: What is done by Coping Style

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only 13 (1 6.7%) 3 ( 5.2%) 13 (1 4.4%) 7 (1 2.5%)

Mostly Doctor 1 5 (1 9.2%) 1 5 (25.9%) 16 (1 7.8%) 4 ( 7.1%)

S h ared 3 4 (43.6%) 28 (48.3%) 35 (38.996) 36 (64.3%)

Mostly You 9(11.5%) 8(13.8%) 14(15.6%) 6(10.7%)

You Only 7(9 .0%) 4(6.9%) 12(13.3%) 3(5.4%)

Total (n= 7 8) (n= 5 8) (n=90) (n= 5 6)

Chi-square-1 8.293, 12df, p=0.107. (n=283)

Table 6.22 Quality of Life Vignette: What is donc by Coping Category

Coping Category

Control True Low True Repressive Category Repressor Anxious Anxious Anxious

Doctor Only 1 O (1 4.1 %) 4 ( 7.4%) 9 (1 0.3%) 7 (1 4.6%)

Mostly Doctor 9 (1 2.7%) S ( 9.3%) 1 3 (1 4.9%) 1 ( 2.1%)

Shared 2 9 (40.8%) 22 (40.7%) 35 (40.2%) 28 (58.3%

Mostly You 1 1 (1 5.5%) 18 (33.3%) 18 (20.7%) 8 (1 6.7%)

You Only 1 2 (1 6.9%) 5 ( 9.3%) 12 (1 3.8%) 4 ( 8.3%)

Total (n=71) (n=54) (n=87) (n=48)

Chi-square=l7.258, 1 Zdf, p=0.140, ( ~ 2 8 3 )

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