Running head: WOMEN & RESILIENCY AFTER BURN INJURY Hunter 1 Struggles of Resiliency: Women Negotiating Interpersonal Relationality Following Burn Injury by Tevya A. Hunter A thesis submitted to the Faculty of Graduate Studies of The University of Manitoba in partial fulfillment of the requirements of the degree of DOCTOR OF PHILOSOPHY Department of Psychology University of Manitoba Winnipeg Copyright © 2016 by Tevya A. Hunter WOMEN & RESILIENCY AFTER BURN INJURY Hunter 2 Abstract Burn injury is considered a distressing and traumatic injury often leading to psychological disturbances such as depression, anxiety, posttraumatic stress disorder, and body image dissatisfaction. At the same time, the literature also suggests that people demonstrate surprising resiliency when dealing with their burn injury. How women who have experienced burns understand their injury and what it means to them to be a resilient, is largely ignored in the burn literature. This study addressed these shortcomings by exploring narratives from thirteen women, recruited from a regional burn center, who experienced a burn injury of up to 30% of their total body surface area (TBSA). Two interviews were conducted with each participant. The first interview employed a photo elicitation technique whereby photographs taken by the participant of her life with a burn injury were used to elicit stories in the context of the interview. The second interview was conducted using a semi-structured interview schedule developed to investigate experiences and understandings of distress and resiliency. The interview transcripts were analyzed using narrative analysis in order to explore how women constructed stories about distress and resiliency following burn injury. The findings show three main struggles the women faced in negotiating resiliency which all pertained to relational tension, that is, relationships with others. The three struggles of resiliency identified in the study are 1) feeling as though the body was public, 2) deciding how to share their burn experience with others, and 3) accepting support from others while maintaining independence. The findings of this study are discussed in the context of a relational theory named self-silencing which delineates how women behave socially to maintain relationships by inhibiting self-expression. Findings are also discussed relative to current research in the areas of burn injury and resiliency. WOMEN & RESILIENCY AFTER BURN INJURY Hunter 3 Acknowledgments I would like to thank my advisor, Dr. Maria Medved, who has provided instrumental support and guidance throughout this process. Dr. Medved played an essential role in cultivating my qualitative knowledge base and research skill over the course of my graduate training which involved encouragement, fostering independence, and expert advice. I would also like to express my special appreciation to my committee members, Dr. Sarvesh Logsetty, Dr. Diane Hiebert- Murphy, and Dr. Jitender Sareen, for their assistance and insightful feedback throughout this process. Sources of funding for this thesis included a Manitoba Health Research Council Studentship, a Faculty or Arts Endowment Fund Award, a Psychology Graduate Fellowship from the Department of Psychology at the University of Manitoba, and the Manitoba Firefighters‘ Burn Fund. I would also like to thank my strong network of family and friends. Thank you to the members of the Language, Health, and Illness Research Group for valuable feedback throughout this research process. Thank you to my ―psych girls‖ who laugh, cry, and learn together with unconditional acceptance and support. Thank you to my family who encouraged me to pursue psychology since high school and promoted my education unequivocally while offering me a secure home base with constant love and nurturance. Thank you to my niece, Soleil, and my nephew, Felix, for providing much needed lightness and laughter throughout this endeavour. And finally, my greatest thanks and appreciation goes to my partner, Joseph Hurlburt, who was by my side for this long journey and who was willing to sacrifice for my success. WOMEN & RESILIENCY AFTER BURN INJURY Hunter 4 Dedication To my family: Pam, John, Quinn, and my partner Joe. -I would not have been able to achieve this accomplishment without your unwavering belief in my ability and patient support WOMEN & RESILIENCY AFTER BURN INJURY Hunter 5 Table of Contents Abstract pg. 2 Acknowledgements pg. 3 Dedication pg. 4 List of Tables pg. 6 Chapter 1: Introduction pg. 7 Chapter 2: Literature Review pg. 13 Burn Injury pg. 13 Resiliency pg. 23 Resiliency & Burns pg. 29 Significance pg. 31 Chapter 3: Conceptual Framework, Methodology, & Methods pg. 35 Conceptual Framework pg. 35 Narrative Research pg. 39 Ethical Considerations pg. 46 Participants pg. 47 Recruitment pg. 48 Measures pg. 49 Procedure pg. 53 Data Analysis pg. 57 Research Rigour pg. 60 Reflexivity pg. 60 Chapter 4: Findings pg. 67 Sample Demographics pg. 67 Sample Description pg. 68 Overview pg.71 The Body Made Public pg. 74 To Share or to Protect pg. 93 Accepting Support from Others pg. 107 Chapter 5: Discussion pg. 120 Summary of Findings pg. 120 General Discussion pg. 121 Strengths & Limitations pg. 146 Implications pg. 150 Future Directions pg. 154 Conclusion pg. 157 References pg. 158 APPENDIX A: Participant Information and Consent pg. 187 APPENDIX B: Invitation to Participate pg. 193 APPENDIX C: Socio-demographic Questionnaire pg. 194 APPENDIX D: Photo Elicitation Interview Prompts pg. 195 APPENDIX E: Semi-Structured Interview Schedule pg. 196 APPENDIX F: Photo Elicitation Information for Participants pg. 198 APPENDIX G: Script for Photography Instructions pg. 199 APPENDIX H: Photographic Consent & Waiver pg. 200 APPENDIX I: Transcription Conventions pg. 201 WOMEN & RESILIENCY AFTER BURN INJURY Hunter 6 List of Tables Table 1. Number of Participants in Each Category of Mental Health Based on the Kessler Psychological Distress Scale (K10) pg.69 Table 2. Descriptive Statistics for Silencing the Self Scale (SSTS) Total and Subscales and the Connor Davidson Resiliency Scale (CD-RISC) with Comparison Group Means pg. 70 WOMEN & RESILIENCY AFTER BURN INJURY Hunter 7 Chapter 1: Introduction Individuals with burn injuries use their bodies to illustrate their stories (Moi, Vindenes, & Gjengedal, 2008); and, it is through developing these stories about injury that individuals come to figure out what their ―reality‖ is and how they, and others, fit into the narrative (Frank, 2009). In this ongoing process, subjective understandings of burn injury emerge. Studying these narratives proves to be a rich mode of knowledge production, offering unique perspectives and creating the opportunity to find meaning in the particular rather than in generalizations (Riessman, 2008). There is extensive literature focusing on objective variables of burn injury and related psychological outcomes which has provided researchers with a solid foundation for understanding the phenomenon. While this quantitative information is important, the voices of those who experience burn injury themselves are largely ignored in the literature. Corry and colleagues (2009) and Sareen and colleagues (2013) emphasized the need for qualitative research in the burn literature in order to enhance our understanding of the diversity in individual experience. This study aims to contribute to the burgeoning literature which integrates the subjective into our understanding of burn injury which is essential to knowledge production in order to develop a comprehensive and well-rounded understanding of a topic. Burns are traumatic injuries with severe consequences both physically and psychologically. While medical advancement in burn care continues to improve physical aspects of burn recovery, psychological research lags behind. The recovery process of burn injury has been linked with significant psychological disorders, such as depression, anxiety, posttraumatic stress disorder as well as body image disturbances (Lawrence, Fauerbach, & Thombs, 2006; Oster & Sveen, 2014; ter Smitten, de Graaf, & Van Leoy, 2011; Wallace, Lees, and Bernstein, 1987; Wiechman & Patterson, 2004). Although women tend to acquire burns less often than men, women appear to WOMEN & RESILIENCY AFTER BURN INJURY Hunter 8 be at increased risk for psychological dysfunction post burn (Thombs et al., 2007; van Loey, Maas, Faber, & Taal, 2003; Wiechman & Patterson, 2004). This suggests that women may experience and understand burn injury differently than men. While many studies have reported higher mental health risk for women following burn injury, researchers have largely failed to query why this might be or to address the implications this has for women. In a review of psychosocial burn research, Klinge and colleagues (2009) exposed an underrepresentation of women in this literature, indicating researchers have failed to adequately capture women‘s unique gendered issues. While most studies include a mixed sample of both men and women, with some examining gender differences based on outcomes, studies that go beyond identifying generic gender differences are lacking. For example, while it has been shown that women are at higher risk for depression following burn injury, it is also important to understand what this means to the women who are depressed and how they make meaning of their experience. The way in which women organize their experiences and convey their stories reveals an important layer to the complex topic of burn injury and requires independent