Couples Coping with Cancer: A Hold Me Tight Pilot Intervention Study A Dissertation Submitted to the Graduate Faculty of Drexel University by Laura E. Lynch in partial fulfillment of the requirements for the degree of Doctor of Philosophy May 2015 Couples Coping with Cancer ii Copyright 2015 Laura E. Lynch. All Rights Reserved Couples Coping with Cancer iii DEDICATION This dissertation study is dedicated to my incredible husband, Phillip Lynch, whose loving support and endless confidence in me made this possible. Couples Coping with Cancer iv ACKNOWLEDGEMENTS I would like to first acknowledge Dr. Maureen Davey who has not only been my dissertation advisor but a mentor to me since the day I began my doctoral studies. Maureen, you have always encouraged my interests and strengths, and you have pushed me to achieve more than I thought possible. Your work ethic and drive are ever inspiring to me, as is your genuine care for your students’ well-being and success. You were there for me every step throughout this process and I am so appreciative of the opportunity you gave me to be a member of the research team on this study and to utilize the data for my dissertation. I am privileged to have worked with someone who is so compassionate, sincere, and generous. There are not enough words to express how grateful I am to you. I would also like to express many thanks to Dr. Ting Liu. Ting, it is because of you that I developed a love for Emotionally Focused Couples Therapy and became re- inspired in my clinical work with couples. You are an incredibly gifted therapist and I can only aspire to become as effective as you someday. I am also appreciative to you for allowing me to be a part of the Hold Me Tight research team and for enabling me to have a dissertation that combined my favorite therapeutic model with my research interests. My other committee members, Dr. Roberta Waite, Dr. Eric Johnson, and Dr. Scott Lind have also been invaluable. Roberta, your experience with health disparities research has been instrumental and your insightful feedback about recruitment and attrition was so appreciated. Eric, your helpful feedback assisted me in restructuring my specific aims and creating a more streamlined final product—thank you! Dr. Lind, I am privileged to have someone with your oncology expertise as a committee member; I am grateful for the time you have taken to be a part of the committee. Couples Coping with Cancer v I also want to acknowledge my beloved family, including my parents, siblings, and grandparents. Thank you for your unconditional love and belief in me. I stand on the shoulders of giants. Finally, I want to thank my husband, Phil. You have always enthusiastically supported my professional goals and have sacrificed to make them possible. Your humor, empathy, and perspective kept me going when I faltered. I am incredibly blessed to have you in my life. Thank you for being part of this journey; I look forward to our adventures to come. Couples Coping with Cancer vi TABLE OF CONTENTS LIST OF TABLES……………………………………………………...…………..…..viii ABSTRACT……………………………………...………………………………….….. ix 1. INTRODUCTION…………………………………………………………………...1 2. LITERATURE REVIEW…………………………………………………………..11 2.1 Prevalence …………………………………………………….……………………...11 2.2 Theoretical Frameworks……………………………………………………………. 13 2.3 Self of the Researcher………………………………………………………………. 25 2.4 Biological Impact of Cancer…………………………………………………………28 2.5 Psychological Impact of Cancer……………………………………………………..38 2.6 Social Impact of Cancer……………………………………………………………...44 2.7 Cancer and Couple Attachment…………………………………………………….. 56 2.8 Interventions to Help Couples Cope with Cancer …………………………………………………………………... 50 2.9 Emotionally Focused Therapy……………………………………………………… 59 2.10 Purpose of Dissertation Study…………………………………………...……… 86 3. METHODOLOGY…………………………………………………………..……... 88 3.1 Research Design…………………………………………………………………….. 88 3.2 Sample………………………………………………………………………………. 89 3.3 Procedure…………………………………………………………………………… 94 3.4 Measurements……………………………………………………………………... 106 3.5 Data Processing and Analysis Plan………………………………………………... 116 3.6 Potential Threats to reliability and Validity……………………………………….. 118 3.7 Schedule, Obstacles and Feasibility Issues…………………………………………………………………....118 4. RESULTS …………………………………………………………………………..121 Couples Coping with Cancer vii 5. DISCUSSION………………………………………………………………………160 LIST OF REFERENCES……………………………………………………………….176 6. APPENDICES……………………………………………………………………...192 6.1 Appendix A: Letter of Support from Dr. Lydia Komarnicky……………………………………………………………….193 6.2 Appendix B: Initial IRB Submission (July, 2013) and Approval Letter……………………………………………………………….. 194 6.3 Appendix C: Original Adapted “Hold Me Tight” Couples’ Group Intervention Manual (6-sessions).……………………………………….… 214 6.4 Appendix D: Original Fidelity Checklist………..………………………………… 259 6.5 Appendix E: Release of Information…………………..………………………….. 271 6.6 Appendix F: Pre and Post-Test Measures…………………...……………………...273 6.7 Appendix G: Attendance Sheet…………...………………………………………...302 6.8 Appendix H: Adapted 5-session “Hold Me Tight” Manual…………,,,…...……….291 6.9 Appendix I: Adapted 5-session “Hold Me Tight” Fidelity Checklist………………328 6.10 Appendix J: IRB Amendment (March, 2014) for 5-session Treatment manual, fidelity checklist and adaptation of recruitment tools……………………………………………………..………339 6.11 Appendix K: Revised March, 2014 Screening for Eligibility Tool (to include committed couples)…………………………………………...346 6.12 Appendix L: Original Study Flyer and Brochure Posted at DUCOM and ACS………………………………...…………………348 6.13 Appendix M: Revised Study Flyer and Brochure Posted at DUCOM and ACS…………………………………………………...351 6.14 Appendix N: Additional Group Advertisement and Advertisement Sites…………………………………………………………….354 VITA……………………………………………………………………………………355 Couples Coping with Cancer viii LIST OF TABLES Table 3.1. Constructs, Measures, and Reporters………………………………………..112 Table 4.1. Chi-square results of completers vs. non-completers for categorical demographic variables………………………………...126 Table 4.2. Independent sample t-tests for completers versus non-completers………………………………………………………………….128 Table 4.3. Demographic Characteristics of Couples who Completed Study…….………………………………………………………………….130 Table 4.4. Descriptive Statistics for Outcome Variables……………………………….139 Table 4.5. Paired Samples T-Test Results for Patients…………………………………145 Table 4.6. Paired Samples T-Test Results for Partners………………………………….47 Table 4.7 Paired Samples T-Test Results for Satisfaction of Patients and Partners……………………………………………………149 Table 4.8. Repeated Measures ANOVA for RDAS Total Scores for Patients’ and Partners’ Baseline and Post-Intervention…………………………………………………………………...150 Table 4.9. Repeated Measures ANOVA for IES Total Scores for Patients’ and Partners’ Baseline and Post-Intervention………………………………………………………………………..151 Table 4.10. Consumer Satisfaction Scale Open-Ended Questions……………………..156 Couples Coping with Cancer ix ABSTRACT Couples Coping with Cancer: A Hold Me Tight Pilot Intervention Study Laura E. Lynch, M.S. Maureen Davey, PhD, LMFT Cancer is an illness that affects not only patients but also their partners/spouses. Thus, there is a need for more couple-based psychosocial interventions designed to help couples patients and their partners with the diagnosis and treatment of cancer. Emotionally Focused Therapy for couples (EFT) is an attachment evidenced based model that has some support for use with couples coping with chronic illness. Prior researchers who evaluated couple-based psychosocial cancer interventions have included primarily white middle class samples and most focused on cognitive behavioral and psycho-educational approaches. Using attachment theory (Bowlby, 1980) and the biopsychoscial approach (Engel, 1977), this one-arm program evaluation study (pre-post test) was designed to examine if an adapted version of a couple’s group therapy treatment, Hold Me Tight (HMT: Johnson, 2009) can help a racially diverse low to middle income sample of couples cope with the diagnosis and treatment of cancer in a spouse or in a committed partner. A total of seven couples, six African American and one White/Asian couple (total of n=14 participants) completed this study. The couple support group intervention (HMT) was evaluated at baseline and post-intervention. The following two specific aims were examined: 1) Assess intervention acceptability and feasibility using recruitment and retention rates, participants’ reasons for refusal or dropout, and level of post-intervention participant satisfaction; and 2). Pilot test treatment efficacy by comparing the pre-test and Couples Coping with Cancer x post-test measures for couples who completed the study. A comparison of baseline and post-intervention psychological (BDI II), relationship satisfaction (RDAS), attachment (ECR-S, BARE), and impact of the cancer (IES and FACT-G, version 4.0 for patients only) measures were conducted. Descriptive statistics, paired samples t-tests, and repeated measure ANOVAs were conducted to describe pre-post differences. Despite the slower than anticipated rate of recruitment at the one referring northeastern urban oncology clinic (25 couples were referred over a 13-month recruitment period; 12 volunteered and 7 couples completed the study), findings suggest the intervention is acceptable, although more feasible for patients post-cancer treatment (survivors). According to the repeated measures ANOVA results, there were significant medium to large effects for improved relationship satisfaction (RDAS total) and a decreased