Research Study of the Lived Experience of Alopecia Areata for Women During Early Adulthood A Dissertation SUBMITTED TO THE FACULTY OF UNIVERSITY OF MINNESOTA BY Heather Bemmels IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY Advisor – Pat McCarthy Veach, Ph.D. June 2017 © Heather Bemmels 2017 i Acknowledgements This author is grateful to the National Alopecia Areata Foundation, the Minnesota Alopecia Support Group, and the University of Minnesota Department of Dermatology for their assistance with recruitment. ii Abstract Objectives: Alopecia areata (AA) is an autoimmune condition that causes baldness in men and women; however, it may be especially distressing for women given social standards and expectations for beauty. This sporadic condition can present with various extents of hair loss that unexpectedly relapse or remit across time. The present phenomenological study aimed to describe the lived experiences of early adult women with AA who developed it in pre-adolescence or adolescence, to provide greater understanding of the experience of having AA over time. Method: The present study is guided by phenomenological methods, including interpretive phenomenological analysis. Following in-depth, semi-structured interviews with six female participants ages 27-36 with current, active AA, who developed their AA between ages 10-16, data were transcribed and analyzed at an individual and general (i.e., cross case) level for themes. Results: Responses to initial awareness of AA or increasing hair loss were not uniform, with participants’ psychological experiences ranging from not being bothered to life- altering and devastating. Physical sensations and visual reminders of increased hair loss can pull participants out of their everyday experiences, with possible helplessness regarding inability to stop the loss. Losing hair was sometimes experienced as a deep emotional loss, and was sometimes so devastating that years felt “dark” or “lost.” Participants encountered uncertainty regarding when their hair might fall out, as well as unpredictabilitywith others’ reactions. Participants often experienced normality with friends and family, but occasional rejection and derision from others led to certain spaces or situations feeling unsafe for revealing AA. Participants often concealed their AA with iii various approaches, including wigs or hair pins, which might lead to self-consciousness about the AA or wig being discovered. At some point, these routines become “automatic.” Disclosing about AA to others increased vulnerability and openness, which might have negative (e.g., fear of negative reactions) and positive (e.g., deeper relationships) implications. The threat of AA being incidentally discovered can be distressing even after decades of having AA, but for some, making an intentional choice to reveal AA (e.g., openly telling others, not wearing a wig) led to freedom and comfort with the tradeoff of possible increased attention through stares or questions. Discussion: AA impacts individuals’ lives in a variety of ways, and the impact can differ across time, situations, and relationships. AA can produce a great deal of distress that persists after more than a decade of living with it. For others, AA is less distressing. Psychologists and other providers might best serve individuals with AA by better assessing their individual experiences of the condition. Future research might investigate the process of how some individuals with AA come to greater acceptance of or appreciation for their AA. iv Table of Contents List of Tables……………………………………………………………………………...v List of Figures…………………………………………………………………………….vi Introduction……………………………………………………………………………….1 Method…………………………………………………………………………………….6 Results……………………………………………………………………………………11 Discussion………………………………………………………………………………..52 Bibliography……………………………………………………………………………..62 Appendix A: Review of Literature and Rationale for the Present Study………………...67 Appendix B: Supplementary Methods & Definitions……………………………………80 Appendix C: Interview Guide……………………………………………………………86 Appendix D: Individual Psychological Structures……………………………………….91 v List of Tables Table 1. Participants’ Demographic Characteristics……………………………………12 vi List of Figures Figure 1. Procedures for data analysis in the present study………………………………9 Figure 2. Relationships between themes and sub-themes describing the experience of having AA across time for women who developed AA in high school and are currently early adults……………………………………………………………………………....13 1 Research Study of the Lived Experience of Alopecia Areata for Women During Early Adulthood Alopecia refers to baldness or the absence of hair on typically hair-bearing areas of the body, especially the scalp (Venes, 2013). Alopecia areata (AA) is a form of alopecia caused by autoimmune attack of the hair follicles. This most commonly results in discrete, circular patches of alopecia on the scalp or in the beard region (Gilhar, Etzioni, & Paus, 2012). These patches vary in size from small (the size of a dime) to extensive (only a small tuft of hair remains), and frequently are distributed randomly (Olsen, 2011). AA can progress to its most extensive forms, alopecia totalis (AT) or alopecia universalis (AU), involving total alopecia on the scalp or the scalp and body, respectively. AA represents one of the most prevalent autoimmune conditions in the United States, as roughly 2.1% of the population develops it in their lifetime (Mirzoyev, Schrum, Davis, & Torgerson, 2014). This relatively common disease is important to psychologists, as research suggests AA causes serious distress (Hunt & McHale, 2005a; Welsh & Guy, 2009) and is associated with reduced health-related quality of life (Liu, King, & Craiglow, 2016; Rencz et al., 2016). Some authors argue the distress is severe enough to qualify as a depressive or anxiety disorder (e.g., Hunt and McHale, 2005b; Tucker, 2009) and recommend mental or behavioral health treatment (Gupta, Gupta, & Watteel, 1997). Yet, extant studies often yielded contradictory findings that are limited by serious methodological flaws (Bemmels, 2015). More importantly, those studies are predominantly quantitative and hypothesis-driven, and lack details necessary to fully 2 characterize what individuals experience in relation to their AA. There is a gap between what is known empirically about AA and individuals’ realities. Qualitative, phenomenological research is ideal for addressing such a gap, as it results in rich detail that captures the essence of experiences (Wertz, 2005). Thus, it would provide psychologists a better understanding of the experiences of individuals with AA, an important perspective given those individuals may present to counseling and psychotherapy with AA-related concerns. Features of the disease’s course itself are illuminating of the types of experiences a person with AA might encounter. Studies of the lived experiences of AA primarily focus on capturing the detailed ways people cope with these and other experiences. The onset of hair loss is usually sporadic and rapid, and the course of AA overtime is unpredictable (Gilhar et al., 2012). Unsurprisingly, research has found individuals with AA cope with both the initial onset as well as the ongoing unpredictability (Welsh & Guy, 2009). Medical treatments are an active and adaptive coping strategy (Rafique & Hunt, 2015). There is no cure for AA, and available treatments often require continued use over the long-term (Hordinsky & Donati, 2014). Individuals with AA often feel disheartened by the lack of a cure, and will try multiple treatments in attempts at regrowth (Hunt & McHale, 2005a). Using medical treatments is common, despite their being painful and often unsatisfactory (Welsh & Guy, 2009). Hair prostheses (i.e., wigs) and other methods of disguising AA are available, and are considered a practical coping strategy for AA (Rafique & Hunt, 2015; Wiggins, Moore-Millar, & Thompson, 2014). Rafique and Hunt (2015), in their study of the lived experience of AA, proposed 3 the coping strategies their adolescent participants used followed a “causal progression” from maladaptive to adaptive coping across four stages: loss, concerns, negative emotions/thoughts, and coping. In addition to the abovementioned active (medical) and practical (concealing) coping strategies, their participants used support seeking, religion, acceptance, humor, self-distraction, and blaming. The authors proposed the participants chose more adaptive strategies as they lived with AA over time. Their study focused closely on describing the personal, psychological experiences of adolescents, rather than social, medical, or other aspects. Welsh and Guy (2009) also investigated coping and the lived experience of AA, directing their approach to how adults who have had AA over a long duration cope with their body image. Relating their findings to the construct of body image coping with its three components (i.e., avoidance, appearance fixing, and positive rational acceptance; Cash, Santos, & Williams, 2005), they asserted participants passed through the sequential stages of avoiding acknowledging the possibility of ongoing AA, concealing their AA with various strategies, and eventually coming to concealment or other strategies that provided a greater comfortability and a sense of control. Welsh and Guy described personal, psychological experiences, in addition to some of the ways AA can be experienced socially. For example, they noted concerns about AA being noticed by others, participants