Using Mixed-Methods to Evaluate “Transformation of Motivation” as a Construct Influencing Risk Communication among Families at Inherited Risk for Ovarian Cancer Público
Zhao,Jingsong (Summer 2024)
Abstract
Inherited health conditions represent shared risk for families. Many have called for applying relational frameworks in considering how genetic risk communication could be motivated. Generally, these frameworks suggest concepts such as “transformation of motivation” (TM) holding that shared desires to preserve family relationships can prompt positive health steps that would not be taken on the proband’s own behalf. However, the TM construct that to date has been poorly operationalized. My overarching aim is to advance our understanding of how to measure the construct of TM. In Aim 1, I undertook a systematic review of 13 FGRC interventions identified between January 2010 to August 2023. This review aimed to address a research gap by examining how current intervention strategies align with theories at the individual, relational, and family-system levels. Additionally, evaluated the effectiveness of these strategies compared to standard-ofcare groups in fostering communication of inherited risk among families at higher risk of hereditary conditions. Aim 2 and Aim 3 studies represent a new methodological effort to bring conceptual clarity to the latent TM construct. Rather than relying on unvalidated measurements, I systematically analyzed whether survivors of ovarian cancer survivors’ natural patterns of use of a study website might serve as indicators of “we-ness” thought to underpin the TM construct. In aim 2, I found two factors that characterized survivors’ website engagement, one behavioral and one cognitive factor. In Aim 3, I found that “We”-talk were not associated with family closeness and family size. Yet, qualitative interpretations of interviews revealed relational talks from survivors, suggesting that “we”-talk may not be a reliable marker. Furthermore, high and low wetalkers did not differ in their discussion of TM-mapped content, except in their perception of family emotional closeness. In order to evaluate whether TM can be leveraged in behavior change interventions, we must develop rigorous assessment tools to characterize it. Future research needs to move beyond pronoun counts to consider survivor appraisal processes multiple family members’ perspectives on its occurrence, develop and test measures of relational thinking and their association with a variety of shared coping strategies (including health behaviors as the gold standard).
Table of Contents
Table of Contents
CHAPTER 1. LITERATURE REVIEW AND SIGNIFICANCE. 1
1.1 DEFINING THE PROBLEM.. 1
1.1.1 Background on Hereditary Breast and Ovarian Cancer Syndrome. 1
1.1.2 Cascade Screening of Hereditary Breast and Ovarian Cancer Syndrome. 2
1.1.3 Challenges of the Identification of Relatives at Higher Risk. 3
1.1.4 Defining Optimal Family Genetic Risk Communication. 5
1.2 CURRENT STATE OF FAMILY GENETIC RISK COMMUNICATION RESEARCH.. 6
1.2.1 Current Evidence Base for FGRC.. 7
1.2.2 Consideration Relevant to Family Communication of BRCA1/2 Risk. 8
1.3 OVERVIEW OF CONCEPTUAL FRAMEWORKS AND BEHAVIORAL THEORIES. 15
1.3.1 Communication Frameworks. 16
1.3.2 Ethical Frameworks. 18
1.3.3 Behavior Change Theories: Individual Level 19
1.3.4 Behavior Change Theories: Relational Level 20
1.3.5 Behavior Change Theories: Family-system Level 23
1.4 ADVANCING TRANSFORMATION OF MOTIVATION WITH COMMUNAL COPING 25
1.4.1 Dissertation Conceptual Model 25
1.4.2 Current Research in Transformation of Motivation. 26
1.4.3 Current Research in Communal Coping. 29
1.4.4 Summary of Chapter 1. 34
CHAPTER 2. OVERVIEW OF THE DISSERTATION.. 35
2.1 DISSERTATION OVERARCHING AIM.. 35
2.2 THE YOUR FAMILY CONNECTS INTERVENTION STUDY. 36
2.2.1 The Your Family Connects Intervention Study Design. 36
2.2.2 The Your Family Connects Intervention Arm Set-up and Content 38
2.3. MAPPING WEBSITE CONTENT WITH Transformation of motivation. 41
2.3.1 Assertion 1: Enumeration, Contact Choice, Relative Letter Downloads. 42
2.3.2 Assertion 2: Family Communication. 43
2.3.3 Assertion 3: Sensitive Conversation Framework. 44
2.3.4 Website Engagement Measures as Transformation of Motivation Indicators. 44
2.4 PROCESS MODEL AND RESEARCH QUESTIONS. 48
2.4.1. Process Model 48
2.4.2 Aims and Research Questions. 50
CHAPTER 3. A SYSTEMATIC REVIEW OF THEORY-INFORMED STRATEGIES USED IN INTERVENTIONS FOSTERING FAMILY GENETIC RISK COMMUNICATION.. 52
3.1 INTRODUCTION.. 52
3.1.1 Genetic Risk is a Family Issue. 52
3.1.2 Barriers to Family Genetic Risk Communication. 53
3.1.3 Theories Relevant to Family Genetic Risk Communication. 53
3.1.4 Research Questions. 55
3.2 METHODS. 55
3.2.1 Eligibility Criteria. 55
3.2.2 Search Strategy. 56
3.2.3 Study Selection. 56
3.2.4 Data Extraction. 57
3.3 RESULTS. 57
3.3.1 Overview of the Studies. 57
3.3.2 Study Participants. 58
3.3.3 Intervention Strategies Linked to Communication Theory. 62
3.3.4 Intervention Strategy Acceptability. 64
3.4 DISCUSSION.. 65
3.5 UPDATES TO SYSTEMATIC LITERATURE REVIEW.. 67
3.5.1 Rationale. 67
3.5.2 Methods. 68
3.5.3 Results. 68
3.5.4 Discussion. 72
CHAPTER 4. EXPLORATION OF WEBSITE ENGAGEMENT ACTIVITIES AS INDICATORS OF “TRANSFORMATION OF MOTIVATION”. 74
4.1 INTRODUCTION.. 74
4.1.1 Background. 74
4.1.2 Changes to the Dissertation Proposal 75
4.1.3 Research Question. 76
4.2 METHODS. 76
4.2.1 Study Sampling. 77
4.2.2 Creating Your Family Connects Engagement Indicators. 77
4.3 RESULTS. 82
4.3.1 Demographics. 82
4.3.2 Univariate and Bivariate Results. 83
4.3.3 Exploratory Factor Analysis Diagnostic Results. 85
4.4 DISCUSSION.. 87
4.4.1 Interpretations of Two Factors. 87
4.4.2. Conclusions. 88
CHAPTER 5. ASSESSMENT OF “TRANSFORMATION OF MOTIVATION” FACTORS INSIGHTS USING THE THINK-ALOUD APPROACH.. 89
5.1 INTRODUCTION.. 89
5.1.1 Background for Aim 3. 89
5.1.2 Rationale for the Think-Aloud Approach. 89
5.1.3 Replicated Factor Analyses for Survivors in The Structured Interview Study. 89
5.1.4 Proxy Measures of Transformation of Motivation Thinking. 90
5.2 METHODS. 91
5.2.1 Participant Recruitment 91
5.2.2 Study Design. 92
5.2.3 Quantitative Data Measures. 94
5.2.4 Quantitative Data Analysis. 95
5.2.5 Qualitative Data Analysis. 95
5.3 RESULTS. 97
5.3.1 Univariate Analysis Results. 97
5.3.2 Bivariate Analysis Results. 98
5.3.3 Selection of High and Low “We”-talk Prototypes. 99
5.3.4 Enumeration behaviors (Factor 1): High vs. Low We-Talk. 99
5.3.5 Content Engagement (Factor 2): High vs. Low we-talk. 106
5.4 DISCUSSION.. 111
5.4.1 Role of “I”, “We”, “They”-Talk to Indicate Transformation of Motivation. 111
5.4.2 Actions and Content Engagement Factors Among High and Low We-Talkers. 112
5.4.3 Strengths and Limitations. 114
CHAPTER 6. DISCUSSION AND CONCLUSION.. 115
6.1 SUMMARY OF THREE INTERCONNECTED STUDIES. 115
6.1.1 Strengths and Limitations. 116
6.2 DIRECTIONS FOR FUTURE RESEARCH.. 117
6.2.1 “We”-talk Measurement and Beyond. 117
6.3 CONCLUSIONS. 120
REFERENCES. 122
Appendix 1. The Original Inclusion of Other in the Self Scale. 142
Appendix 2. Website Activity Log Counts. 143
Appendix 3. Adapted Inclusion of Other in the Self Scale. 144
Appendix 4. Interview guide. 145
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