the impact of meaning-making coping on psychological adjustment to cancer

375 Pages·2009·21.31 MB·English

THE IMPACT OF MEANING-MAKING COPING ON
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PSYCHOLOGICAL ADJUSTMENT TO CANCER
Virginia Lee
Faculty of Medicine, School of Nursing
McGill University, Montreal
April, 2005
A thesis submitted to the Faculty of Graduate Studies and Research
in partial fulfillment of the requirements of the degree of Doctor of Philosophy
© Virginia Lee 2005
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Abstract
The diagnosis and management of cancer evokes profound questions about one's
understanding of the self, the world, and one's purpose in life. The stress and coping
literature suggest that the process of meaning-making provides a suitable framework to
study such existential questions, as well as an ideal method of intervention. Through a
series of manuscripts, this thesis examines the construct of meaning-making within the
specific domain of cancer, describes the development of a meaning-making intervention,
and assesses the impact of meaning-making coping on psychological adjustment to
cancer.
The recent proliferation of studies on the concept of meaning that includes the
adult cancer experience has been conceptualized and operationalized in a variety of ways.
To better understand and use the meaning-making concept within the cancer experience,
a systematic review of the literature was conducted to synthesize the current level of
knowledge and determine where research should be directed. This review of the
empirical and qualitative findings suggested that the successful ability to construct a
sense of meaning in illness may lead to positive psychological outcomes. Thus a novel
meaning-making intervention (MMI) for cancer patients was developed, and its
applicability as well as its effects on psychological adjustment to cancer were explored in
a pilot study with a heterogeneous group of patients. Significant improvements in self-
esteem and self-efficacy were reported in a small, uncontrolled sample and encouraged
the need for further confirmatory testing.
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Guided by the pilot study results, a randomized controlled trial tested the effect of
the MMI on levels of self-esteem, optimism, and self-efficacy in a homogeneous sample
of newly diagnosed breast or colorectal cancer patients. After controlling for baseline
differences on each outcome variable, participants in the experimental group (n=35) who
received the MMI were found to have significantly improved perceptions of self-esteem,
optimism, and self-efficacy immediately following receipt of the MMI compared to the
control group (n=39) who received usual care. Although the generalizability of the
results warrants further examination, the MMI is proposed as a feasible and beneficial
approach to address the existential concerns of patients during the cancer experience.
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Résumé
Le diagnostic du cancer et la gestion de cette maladie suscitent des interrogations
profondes sur soi, la vie et le sens de sa propre vie. La litterature sur les sujets du stress et
de l'adaptation a cette situation suggêre que le processus du « faire-sens » (meaning-
making) fournit a la fois un cadre pertinent a l' etude des questions existentielles lièes
cette experience ainsi qu'une methode ideale d'intervention. A travers une serie de textes
sur le sujet, cette thêse examine le construit du « faire-sens » a l'interieur du domaine
specifique du cancer, decrit le developpement d'une intervention 'Das& sur le processus
du «faire-sens» et evalue l' impact du mecanisme d' adaptation du «faire-sens» sur
l'ajustement psychologique au cancer.
La recente proliferation d' etudes sur le concept de « sens » chez l'adulte atteint
d'un cancer a conceptualise et mesure le «faire-sens» de diverses fawns. Afin de mieux
comprendre et de mieux utiliser le concept du « faire-sens » dans le cadre d'un cancer,
une revue systematique de la litterature a ete effectuee pour faire la synthêse du niveau
actuel des connaissances et pour determiner dans quelle direction la recherche devrait etre
dirigee. Cette revue des resultats qualitatifs et empiriques suggeraient que la faculte de
reussir a trouver un sens a la suite d'un diagnostic de cancer peut conduire a des resultats
psychologiques positifs. Une intervention originate de « faire-sens » chez des patients
atteints d'un cancer a ete developpee et sa possible application a la population cancereuse
ainsi que ses effets sur l'ajustement psychologique au cancer ant ete explores dans une
etude pilote. Des ameliorations significatives de l'estime de soi et de la confiance en ses
propres capacites a gerer la situation ont ete rapportees dans un petit echantillon non
contrOle, resultats qui encourageaient la poursuite de recherches ulterieures pour en
confirmer les resultats.
A la lumiêre des resultats de l'etude pilote, un essai contrede randomise a ete
concu pour examiner l'effet de l'intervention de « faire-sens » sur les niveaux d'estime de
soi, d'optimisme et de la confiance en leurs propres capacites chez un echantillon
homogêne de patients qui avaient ete rëcemment diagnostiques avec un cancer du sein ou
colorectal. Aprês un contrOle des differences de base, on a decouvert chez les participants
du groupe experimental (n=35) qui ont beneficie d'une intervention de « faire-sens » que
ces patients avaient une meilleure perception de l'estime de soi, de l'optimisme et de la
confiance en leurs propres capacites a gèrer la situation tout de suite apt-6s l'intervention
compares au groupe temoin (n=39) qui a beneficie des soins habituels. Bien qu'un
examen plus approfondi de la generalisabilite des resultats soit souhaitable,
l'intervention de « faire-sens » constitue une approche faisable, bënefique pour traiter les
preoccupations existentielles des patients durant leur cancer.
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Table of Contents
Abstract(cid:9) ii
Résumé(cid:9) iv
Acknowledgements(cid:9) xi
Preface(cid:9) xiii
McGill University Regulations for a Manuscript-Based Thesis (cid:9) xiv
Organization of Thesis(cid:9) xvii
Contributions of Co-Authors (cid:9) xix
Statement of Originality(cid:9) xxi
Chapter 1 Introduction(cid:9) 1
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1.1 Historical Perspective (cid:9) 1
1.2 Prevalence of Cancer-Related Psychological Distress (cid:9) 2
1.3 Cancer-Related Existential Distress(cid:9) 2
1.4 Treatment of Psychological Distress (cid:9) 4
1.5 Overall Research Purpose and Objectives(cid:9) 5
1.6 Ethical Considerations (cid:9) 5
Chapter 2 Hypothesis Development Phase (cid:9) 7
2.1 Preface(cid:9) 7
2.2 Need for Conceptual Clarity (cid:9) 8
2.3 Manuscript One(cid:9) 10
Clarifying "Meaning" in the Context of Cancer Research - A Systematic
Literature Review(cid:9) 10
Abstract(cid:9) 11
Introduction(cid:9) 12
Methods(cid:9) (cid:9) 13
Search strategy.(cid:9) 13
Inclusion criteria. (cid:9) 13
Exclusion criteria. (cid:9) 14
Data extraction. (cid:9) 14
Results(cid:9) 15
Methodological aspects.(cid:9) 16
Conceptual aspects.(cid:9) 20
Excluded studies. (cid:9) 25
Discussion(cid:9) 26
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Conclusion (cid:9) 30
Chapter 3 Methods Development Phase (cid:9) 31
3.1 Preface(cid:9) 31
3.2 Literature Review of Psychological Interventions(cid:9) 31
3.3 Development of a Meaning-Making Intervention for the Cancer Population (cid:9) 36
3.3.1 Appropriateness of Prototype Intervention(cid:9) 36
3.3.2 Rationale for Target Pilot Population (cid:9) 37
3.4 Manuscript Two(cid:9) 40
Meaning-Making and Psychological Adjustment to Cancer: (cid:9) 40
Development of an Intervention and Pilot Results (cid:9) 40
Abstract(cid:9) 41
Introduction(cid:9) 43
Conceptual Framework(cid:9) 43
Meaning-Oriented Clinical Interventions (cid:9) 44
Factors Considered in Developing the Intervention (cid:9) 46
Methods(cid:9) 48
Study population. (cid:9) 48
Intervention. (cid:9) 49
Procedure. (cid:9) 50
Measures. (cid:9) 50
Qualitative analysis.(cid:9) 52
Statistical analysis.(cid:9) 52
Results(cid:9) 53
Sample characteristics(cid:9) 53
Qualitative results: (cid:9) 54
What kind of meaning-making intervention helps cancer patients in their
search for meaning?(cid:9) 54
Participant feedback(cid:9) 55
Statistical results (cid:9) 56
Are patients with breast or colorectal cancer, or in a certain phase of the
cancer trajectory more likely to benefit from a meaning-making
intervention? (cid:9) 56
What outcomes are most sensitive to change following the meaning
intervention? (cid:9) 57
What background patient and disease-related characteristics are associated
with the changes in outcomes? (cid:9) 57
Discussion(cid:9) 58
Clinical Implications(cid:9) 60
Limitations(cid:9) 60
Conclusion(cid:9) 61
Chapter 4 Controlled Intervention Trial Phase (cid:9) 62
4.1 Preface(cid:9) 62
4.2 Rationale for Methodology (cid:9) 62
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4.2.1 Randomized Controlled Trial Design (cid:9) 62
4.2.2 Sample(cid:9) 63
4.2.3 Main Outcome Measures (cid:9) 65
4.2.4 Sample Size Calculations(cid:9) 65
4.3 Rationale for Plan of Analysis (cid:9) 67
4.3.1 Justification for Choice of Analysis of Covariance (ANCOVA) (cid:9) 67
4.3.2 Post-Test Comparisons Between Groups(cid:9) 68
4.3.3 Choice of Covariates(cid:9) 69
4.3.4 Assumptions of ANCOVA (cid:9) 71
4.3.5 Outliers •(cid:9) 72
4.3.6 Missing Values(cid:9) 72
4.4 Manuscript Three(cid:9) 74
Meaning-Making Intervention During Breast or Colorectal Cancer Treatment (cid:9) 74
Improves Self-Esteem, Optimism, and Self-Efficacy(cid:9) 74
Abstract(cid:9) 76
Methods(cid:9) 81
Design. (cid:9) 81
Study population and recruitment. (cid:9) 82
Data collection procedure. (cid:9) 82
Randomization. (cid:9) 83
Meaning-making intervention(cid:9) 84
Usual care control group. (cid:9) 85
Treatment fidelity and integrity. (cid:9) 86
Masking(cid:9) 86
Outcome measures. (cid:9) 87
Demographic data. (cid:9) 88
Sample size. (cid:9) 88
Statistical analysis.(cid:9) 89
Results(cid:9) 89
Participant flow.(cid:9) 89
Sample characteristics(cid:9) (cid:9) 90
Comparability of groups (cid:9) 91
Use of external psychological support.(cid:9) 92
Intervention characteristics. (cid:9) 92
Effect of the MMI on between-group differences. (cid:9) 93
Clinical significance(cid:9) 93
Discussion(cid:9) 95
Limitations and Future Directions (cid:9) 98
Conclusion (cid:9) 101
Chapter 5 Limitations and Directions for Future Research (cid:9) 102
5.1 Meaning-Making and the Disease Trajectory(cid:9) 103
5.2 Meaning-Making and Colorectal Cancer(cid:9) 103
5.3 Meaning-Making and Purpose in Life (cid:9) 104
5.4 Effect of the Meaning-Making Intervention on Cognitive Processing and
Emotional Social Support (cid:9) 105
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Chapter 6 Conclusion(cid:9) 109
6.1 The Challenge of Integrating Psychosocial Care into Total Cancer Care (cid:9) 110
6.2 Summary(cid:9) 113
References(cid:9) 115
Appendix A. Information to Accompany Systematic Literature Review (cid:9) 144
Appendix Al . Qualitative studies of meaning-making in cancer populations (cid:9) 145
Appendix A2. Quantitative studies related to meaning-making (cid:9) 155
Appendix A3. Assessment of selection and attrition bias in quantitative studies (n=21)
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Appendix A4. Summary of demographics provided in qualitative studies (n=23) (cid:9) 164
Appendix AS. Summary of demographics provided in quantitative studies (n=21) (cid:9) 166
Appendix A6. Major findings extracted from studies in conceptual review (cid:9) 168
Appendix B. Information to Accompany Pilot Study(cid:9) 169
Appendix Bl. Review of psychological interventions with a meaning-oriented
component for cancer patients (cid:9) 170
Appendix B2- Questionnaire packet for pilot study participants (cid:9) 173
Hospital Anxiety and Depression Scale(cid:9) 176
Psychosocial Adjustment to Illness Scale(cid:9) 180
Life Orientation Test(cid:9) 190
Purpose in Life(cid:9) 191
Rosenberg Self-Esteem Scale (cid:9) 195
Karnofsky Performance Status Scale(cid:9) 196
Symptom Distress Scale (cid:9) 197
The Life Experiences Schedule (cid:9) 200
Short Form Social Support Questionnaire (cid:9) 207
Appendix B3- Summary of psychometric properties of background and outcome
variables (cid:9) 211
Appendix B4 -Flowchart of procedures to develop and pilot test the meaning-making
intervention for cancer patients(cid:9) 216
Appendix B5- Baseline characteristics of sample (N=18)(cid:9) 217
Appendix B6 - Tasks of the Meaning-Making Intervention for cancer patients (cid:9) 218
Appendix B7. Means and standard deviations of main outcome measures(cid:9) 219
at baseline and post-intervention (cid:9) 219
Appendix B8. Correlations among baseline background variables and pre-post test
difference scores (cid:9) (cid:9) 220
Appendix C. Information to Accompany Randomized Controlled Trial (cid:9) 221
Appendix Cl. Questionnaire packet for RCT participants (cid:9) 222
Life Orientation Test(cid:9) 224
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Rosenberg Self Esteem Scale(cid:9) 225
Generalized Self-Efficacy Scale (cid:9) 226
Short Form Social Support Questionnaire(cid:9) 227
Follow-up Questions - Experimental group(cid:9) 231
Follow-up Question - Control Group(cid:9) 232
Appendix C2. Evaluations of the assumptions for ANCOVA (cid:9) 233
C2a. Test of the assumption of independence (cid:9) 233
C2b. Test of the assumption of linearity(cid:9) 234
C2c. Evaluation of the assumption of regression of slopes for self-esteem,
optimism, and self-efficacy(cid:9) 235
Appendix C3. Recruitment letter distributed by staff to eligible patients (cid:9) 237
Appendix C4. Standardized script for delayed pre-test questionnaire returns(cid:9) 238
Appendix C5. Standardized script to inform participants about group assignment (cid:9)
Appendix C6. Standardized introduction to first session for experimental group (cid:9) 240
Appendix C7. Flow diagram of subject progress through phases of randomized
controlled trial(cid:9) 242
Appendix C8. Baseline characteristics for experimental versus control groups (cid:9) 243
Appendix C9. Analysis of covariance: Post-test means and standard deviations (SD)
for experimental and control group for each outcome measure (cid:9) 244
Appendix D. Meaning Intervention for Trauma Patients and their Families- (cid:9) 245
Appendix E. A Meaning-Making Intervention (MMI) for Cancer Patients(cid:9) 281
Appendix F. Certificates of Ethical Approval (cid:9) 325
Appendix F 1. Ethical approval for pilot study from the McGill Institutional Review
Board and independent hospital sites(cid:9) 326
Appendix F2. Approved consent forms used for pilot study(cid:9) 339
Appendix F3. Ethical approval for randomized controlled trial from the McGill
Institutional Review Board and independent hospital sites(cid:9) 351
Appendix F4. Approved consent forms used for RCT (cid:9) 371
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