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Disordered Eating and Body Dissatisfaction in Women with Physical DISORDERED EATING AND BODY DISSATISFACTION IN WOMEN WITH PHYSICAL DISABILITIES: A MIXED METHODS APPROACH KALEY MAUREEN ROOSEN A DISSERTATION SUBMITTED TO THE FACULTY OF GRADUATE STUDIES IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY GRADUATE PROGRAM IN PSYCHOLOGY YORK UNIVERSITY TORONTO, ONTARIO June 2017 © Kaley Roosen, 2017 ii Abstract Studies have shown that women with chronic illnesses/physical disabilities experience eating disorder symptoms at higher rates than those without. Limited research has explored the reasons behind disability as a potential risk factor for disordered eating/body dissatisfaction. The present study examined disordered eating and body dissatisfaction in young women with physical disabilities. The research used a mixed methods approach with a quantitative (Study 1) and a qualitative component (Study 2). Study 1 compared disordered eating, body dissatisfaction, and mental health problems in 114 women with physical disabilities with those without any disability. It further examined how reported disability severity related to disordered eating, body dissatisfaction and mental health symptoms. Results demonstrated that women with disabilities were more likely to experience higher anxiety and body dissatisfaction. In addition, poorer health rating was significantly associated with greater disordered eating and mental distress, while greater reported subjective disability was associated with greater body dissatisfaction. Study 2 used the grounded theory method to explore the experience of disordered eating in 11 women with physical disabilities from Study 1 who volunteered to be interviewed. Analyses informed by methodical hermeneutics supported the emergence of the core category: Surviving And Thriving In A World Not Designed For Disability And Difference, which captures the experience women with disabilities shared of coping with feelings and realities of being different. In terms of disordered eating, women experienced their eating as different and coped with their overall experience of being different using food, eating and other body modification strategies. The current research highlights the need for greater awareness and programming specified towards the unique needs of physically disabled women. iii Acknowledgements I would like to acknowledge and thank all of the individuals who have helped me progress in this long research journey. First, thank you to all the women who bravely shared their experiences with me of disordered eating, body dissatisfaction, social discrimination and medical trauma. Your words live on within me and ignite a fire to advocate for much needed change for disabled women. Not only that, but your stories also inspired hope as I bore witness to extraordinary resiliency, resistance and community in the face of an unwelcoming society. Next, I would like to thank my supervisor, Dr. Jennifer Mills, without whom I would not have had the courage to tackle such a project. Your unwavering support and ability to guide me through the trees to see the bigger forest has been invaluable. I appreciate that you opened your own research to an area not previously explored by other eating disorder researchers. Not only did you support my work, but you opened your own practice and education more broadly to truly work to improve the lives of those women whom we researched. Next, I would like to thank my supervisory committee, Dr. Yvonne Bohr and Dr. Karen Fergus. You both have been extremely supportive. I have appreciated how you both have supported my learning curve by encouraging personal curiosity and reflectiveness in qualitative research. Thank you to Dave Flora for your statistical guidance. Thank you to Iris Sijercic for your great volunteer support. I would also like to thank various folks who have been supportive and encouraging over the years through writing dates, vent sessions and words that helped me keep going, particularly during those times when it felt hopeless. Specifically, thank you to Genevieve Vrana, Gabby Carafa, Mandy Johnson, Emily Bryntwick, and Leah Keating. I also would not have been able to complete this journey without the amazing support of my family, particularly my parents, Karen and Bernie Roosen. Ever since I decided to attend university in Toronto, you both have been my number one advocates. Thank iv you for the pep talks, the long drives to various interviews, the conference travelling assistance, the snack runs and everything else that you have done for me to get me to this point. I feel remarkably blessed to have such supportive parents. Lastly, thank you to my partner in life and love, David Preyde. You joined me later in this journey, but you saw me through the most difficult times. Thank you for your unwavering belief in my ability to finish and for your ongoing support in every possible way one can imagine being supportive. v Dedicated to my future daughter. vi TABLE OF CONTENTS Abstract ……………………………………………………………………….…………………..ii Acknowledgements ………………………………………………………………..…………….iii Dedication ………………………………………………………………………….……………..v Table of Contents ………………………………………………………………………...............vi List of Tables ………………………………………………………………………….………..viii List of Figures ……………………………………………………………………………………ix Background ……………………………………………………………………………………….1 Introduction to Physical Disability ……………………………………………………….2 Disordered Eating and Physical Disability …………………………………….................3 Body Image and Disability Identity ……………………………………………................7 Mental Health and Physical Disability ………………………………………..………...10 Medical Risks, Obesity and the Pressure to Lose Weight ………………………………12 Quality of Life: Sociocultural Factors of Disability …………………………..………...15 Integration of Disability Studies ………………………………………………...............18 Study Rationale ……………………………………………………………….…………20 Overview of Study Design ………………………………………………….…………...21 Study 1 Objectives and Hypotheses …..…………………………………………….…………...23 Study 1 Method ……………………………………………………………………..…………...24 Participants ………………………………………………………………….…………...24 Procedure ………………………………………………………………….…………….25 Measures ………………………………………………………………….……..............25 Data Analysis ……………………………………………………………….…………...32 Study 1 Results …………………………………………………………………….……………34 Demographics …………………………………………………………………...............34 Disability ……………………………………………………………………..………….35 Disordered Eating (Hypothesis 1) ……...…………………………………..……………36 Mental Health (Hypothesis 1) …………………………………………..……………….38 Predictors of Disordered Eating, Body Dissatisfaction and Mental Health Status (Hypothesis 2 & 3) ….…………………………………………………………...............39 Study 1 Discussion …………………………………………………………………….………...42 vii Limitations and Subsequent Research Questions …………………………….…………52 Study 2 Qualitative Research Objectives ………………………………………….…………….55 Theoretical Framework ……………………………………………………………….…………55 Study 2 Method …………………………………………………………………….……………56 Methodology ……………………………………………………………….……………56 Situating Oneself as the Researcher ……………………………………….…………….57 Data Collection ………………………………………………….………..….………….61 Selection and Recruitment of Participants …………….………...………………61 Interview Process …………………………………….………...………..............63 Participants ………………………………………………….…………...………………64 Data Analysis …………………………………………….…………...…………………78 Study 2 Results/Findings …………………………………………………...…………...............81 Category 1: Functional Differences ………………………………………...…………...85 Category 2: Embodiment Differences ………………………………...……………….131 Category 3: Social Differences ………………...……………………..……..................156 Study 2 Discussion ………………………………...………………………...…………............189 Discussion and Integration of Studies 1 and 2 ……………………………..…………………..210 Clinical Implications and Future Directions ...……………………..…………………..215 Limitations ………………………………...……………………..…………………….221 Closing Remarks ……………………...………………………..………………............225 References ………………………………...……………………………………………............227 Tables ………………….……………...…………………………….………………………….261 Figures ………………………………………………………………………………….............270 Appendices ……………………………………………………………………………………..272 Appendix A: Recruitment Message ……………………………………………............272 Appendix B: Informed Consents ………………………………………………............273 Appendix C: Measures …………………………………………………………............277 Appendix D: List of Sample Interview Questions for Study 2 ………………………...323 Appendix E: Initial Coding Trees ……………………………………………………...324 Appendix F: Final Coding Tree ………………………………………………………..335 Appendix G: Full Hierarchical Model Study 2 Results/Findings ……………………...337 viii LIST OF TABLES Table 1: Pearson correlation results between dependent measures for Study 1………………..262 Table 2: One-way ANOVA results comparing women with and without disabilities across measures of body esteem and disordered eating………………………………………...263 Table 3: One-way ANOVA results comparing women with and without disabilities across measures of mental health…………………………………………………….…………264 Table 4a/b: Hypothesis 2: Multiple linear regression predictors - Subjective disability, objective disability, and health rank on dependent measures of disordered eating, body esteem and mental health…………….…………………………………………………...265 Table 5: Hypothesis 2: One-way ANOVA examining differences between congenital and acquired disabilities across measures of disordered eating, body esteem and mental health………………………………………………………………………………………........266 Table 6a/b: Hypothesis 2: Regression predictor – Length of time (years) disabled on dependent measures of disordered eating, body esteem and mental health ……………………267 Table
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