"It's like building a new person": lived experience perspectives on eating disorder recovery processes.

BACKGROUND: Deeply engaging with the expertise of those who have experienced or supported someone with an eating disorder can add to a growing body of knowledge about recovery processes. In this qualitative study, we sought to explore and generate nuanced understandings of recovery experiences of people with a lived ED experience (first hand or as a caregiver) who were working as mentors in the field. To do this, we focused on changes that occur in personality, traits, and interests over the course of an eating disorder and into recovery. METHOD: We conducted semi-structured interviews with 27 people with an eating disorder history, either through personal lived experience (n = 14) or as a caregiver of a loved one with an eating disorder (n = 13). We undertook a reflexive thematic analysis of the data through a critical realist lens. RESULTS: We developed three themes, which illustrate the nonlinearity, relationality, and systemically linked nature of changes across experiences of having and recovering from an eating disorder. The first theme focuses on expansion; participants described how their worlds got bigger as they explored who they were becoming and discovered new ways of living in line with their values. The second theme emphasizes the balance between support and autonomy participants described as important for enabling change to occur across the recovery process. The last theme highlights the ways in which changes throughout the recovery process entwined with systemic factors, including actively pushing back against diet culture and weight stigma. CONCLUSIONS: Participants' stories highlight interactions between individual, relational, and societal shifts that occur throughout the course of an ED and into recovery. They support ongoing calls to orient to ED recovery as situated within a broader social milieu, which invites us to build supportive environments to enable expansion and flourishing.

If we wish to better understand eating disorder recovery, it is important to ask those who have lived experience. In this qualitative study, we sought to better understand changes that people experience while they have an eating disorder and into recovery. We conducted interviews with 27 people with an eating disorder history. Participants had either first-hand lived experience or lived experience of supporting someone with an eating disorder, and were working as peer (n = 14) or family (n = 13) mentors supporting others through recovery. We analyzed this data using reflexive thematic analysis. We developed three themes, which together paint a picture of recovery as a non-linear experience that occurs with the support of others. First, participants shared how recovery felt like the world was getting bigger as they discovered a version of themselves that resonated with their values. Second, they discussed the importance of striking a balance between being supported and having autonomy. Finally, participants reflected on how they needed to push back against weight stigma and diet culture as they worked toward recovery. These stories help to illustrate the importance of looking at shifts and changes in recovery to better understand it­including individual shifts, shifts in relationships, and social shifts that can support recovery.

Guidelines for research with transgender, gender diverse, and intersex individuals with eating disorders: recommendations from trans and intersex researchers.

Further research is urgently needed to address the disproportionately high rates of eating disorders (EDs) among transgender, gender diverse, and intersex (TGDI) individuals in comparison to cisgender, endosex (non-intersex) populations. As TGDI advocates, academics, and clinicians with lived/living experience with EDs, we propose a set of recommendations to guide ethical research specifically about EDs and disordered eating behaviors in TGDI populations. The guidelines included here aim to educate non-TGDI researchers and support TGDI researchers seeking to carry out such research. Considerations for study design, planning, data collection, and dissemination are included.

Eating Disorder Clinical Presentation and Treatment Outcomes by Gender Identity Among Children, Adolescents, and Young Adults.

PURPOSE: Current eating disorder treatment approaches for youth were developed for use with cisgender girls, which limits the understanding of effectiveness for cisgender boys and transgender and gender expansive (TGE) youth. Here, we compare treatment outcomes for cisgender boys and TGE youth with cisgender girls receiving family-based treatment for an eating disorder. METHODS: Patients were aged 6-24 and either active in treatment or discharged from September 1, 2020, to November 1, 2022 (N = 1,235). Patient exposure to treatment varied given individualized length of treatment. Outcomes include eating disorder symptoms, depression, anxiety, suicidality, caregiver burden, and parental confidence in supervising treatment. Treatment outcomes for cisgender boys and TGE youth were compared with cisgender girls. RESULTS: Patients included n = 975 cisgender girls, n = 152 cisgender boys, and n = 108 TGE youth. Anorexia nervosa was the most common diagnosis. Cisgender boys reported significantly lower eating disorder (b = -2.7 [-4.1, -1.3]), anxiety (b = -1.6 [-2.2, -0.9]), and depression (b = -1.7 [-2.4, -0.9]) symptoms at admission compared with cisgender girls. TGE patients had significantly higher anxiety (b = 1.08 [0.28, 1.91]) and depression (b = 1.72 [0.78, 2.65]) symptoms compared with cisgender girls. Cisgender boys started with significantly lower suicidal ideation (b = -1.28 [-2.19, -0.43]) and TGE patients with significantly higher suicidal ideation (b = 1.63 [0.76, 2.51]) than cisgender girls. All symptoms improved during treatment and improved at similar rates over time in treatment regardless of gender identity. DISCUSSION: Early evidence from this study supports the use of family-based treatment for cisgender boys and TGE youth with eating disorders. Further research is needed on the long-term outcomes of this approach for youth of all genders.

The assessment of caregiver self-efficacy in a virtual eating disorder setting.

BACKGROUND: Caregiver self-efficacy is thought to be a key component for successful family-based treatment (FBT) for individuals with eating disorders. As such, interventions aimed at enhancing caregiver self-efficacy, often measured via the Parents Versus Anorexia scale, have been a focal point of FBT literature. However, studies looking at the relationship between caregiver self-efficacy and treatment outcomes have been mixed. We aimed to better understand the influence of caregiver self-efficacy on eating disorder treatment outcomes during FBT. METHODS: Caregiver self-efficacy was measured using the Parents Versus Eating Disorders (PVED) scale, an adapted version of the Parents Versus Anorexia scale, in a sample of 1051 patients with an eating disorder and 1528 caregivers (patients can have more than one caregiver) receiving virtual FBT. Across two multilevel models, we tested how caregiver self-efficacy changed over time and its association with changes in eating disorder symptoms and weight over the first 16 weeks of treatment. RESULTS: Over treatment, PVED scores increased (b = 0.79, SE = 0.04, CI [0.72, 0.86]) and starting PVED scores were predictive of improved eating disorder symptoms (b = - 0.73, SE = 0.22, CI [- 1.15, - 0.30]), but not weight (b = - 0.96, SE = 0.59, CI [- 2.10, 0.19]). We also found that PVED change-from-baseline scores were predictive of weight (b = - 0.48, SE = 0.03, CI [- 0.53, - 0.43]) such that patient weight was lower when caregiver reports of PVED were higher. Likewise, the association between caregiver change in PVED scores and weight varied as a function of treatment time (b = 0.27, SE = 0.01, CI [0.24, 0.29]). Results were consistent when isolating patients with anorexia nervosa. CONCLUSIONS: Caregiver self-efficacy during FBT improved over time but was not robustly associated with treatment outcomes. This may, in part, be due to psychometric properties of the PVED scale. We describe these issues and illustrate the need for development of a new measure of self-efficacy for caregivers supporting their loved ones through eating disorder treatment.

In family-based treatment (FBT) for eating disorders, caregivers play a central role in helping their child recover. Specifically, a caregiver's self-efficacy, or their confidence in their ability to cope with the challenges their child faces during treatment, is believed to be a key to successful treatment outcomes. However, research on the impact caregiver self-efficacy has on patient treatment outcomes is mixed. Using the Parent vs. Eating Disorder (PVED) scale, we looked at the association between caregiver self-efficacy and eating disorder symptoms and weight changes over time in a sample of 1051 patients receiving virtual FBT. Caregiver self-efficacy had little to no significant impact on treatment outcomes. We offer explanations about why our findings challenge existing research that supports the association between caregiver self-efficacy and outcomes. Namely, the PVED scale appears to measure caregiver perceptions of their role in the treatment process (and not self-efficacy). We believe a new measurement tool must be developed and tested for the field to move forward in its understanding of the role caregiver self-efficacy plays in FBT.

Inaccessibility of care and inequitable conceptions of suffering: a collective response to the construction of "terminal" anorexia nervosa.

Informed by our lived experiences with eating disorders, our work providing direct support to communities underserved by existing healthcare structures, and our commitment to social justice, we are deeply troubled by several aspects of the proposed characteristics for "terminal" anorexia nervosa outlined by Gaudiani et al. in Journal of Eating Disorders (10:23, 2022). We have identified two substantial areas of concern in the proposed characteristics provided by Gaudiani et al. and the subsequent publication by Yager et al. (10:123, 2022). First, the original article and the subsequent publication fail to adequately address the widespread inaccessibility of eating disorder treatment, the lack of parameters for what constitutes "high quality care", and the prevalence of trauma experienced in treatment settings for those who do access treatment. Second, the characteristics proposed for "terminal" anorexia nervosa are constructed largely based on subjective and inconsistent valuations of suffering which build on and contribute to harmful and inaccurate eating disorder stereotypes. Overall, we believe these proposed characteristics in their current form stand to detract from, rather than assist, the ability of patients and providers to make informed, compassionate, and patient-centered decisions about safety and autonomy both for individuals with enduring eating disorders and for individuals with more recently diagnosed eating disorders.

Food insecurity among youth seeking eating disorder treatment.

Food Insecurity (FI) is associated with a myriad of mental health concerns in children and adolescents. Eating disorder (ED) risk is higher in youth experiencing FI, and FI in childhood is associated with ED diagnoses later in life. Although a growing body of research has shown that FI is associated with a heightened risk for ED-related symptoms, little is known about how experiencing FI may impact ED treatment, particularly in youth. In this study, we characterize the treatment characteristics of youth aged 6-24 (N = 729) with FI receiving family-based treatment for an ED. FI was defined as self-reported experience of FI (family-level FI) at treatment admission, and living in a low income, low access area according to USDA census tract data. Seventeen patients (2.3 % of sample) self-reported family-level FI at intake and 24 (3.3 % of sample) were designated as living in a low income/low access location. Descriptive analyses only were used to characterize the sample due to sample sizes. Group means on measures of weight, ED symptomatology, depression, anxiety, and caregiver burden were evaluated at admission and after four, eight, 12, 16, and 20 weeks of treatment. Results characterize how FI may impact ED treatment and showcase variation in changes. ED treatment must be responsive to needs related to FI as access to and consumption of food is the very foundation of ED treatment.

Social and contextual influences on eating pathology in transgender and nonbinary adults.

Eating pathology (EP) is reported at alarmingly high rates among transgender and nonbinary (TNB) people. The present study investigates key associations between experiences that are common in TNB populations and EP. TNB individuals located within the United States (N = 212) who self-identified as currently experiencing disordered eating or an eating disorder were recruited from social media outlets and completed an online survey that included measures of EP, discrimination-based trauma symptoms, internalized transphobia, and gender dysphoria. The average age of participants was just over 27 years old (SD = 6.22) and the majority of participants (68.9%) were nonbinary. Data were analyzed using IBM SPSS version 28 and PROCESS 4.0. Discrimination trauma [ß = .27, t(211) = 3.90, p < .001] and internalized transphobia [ß = .21, t(211) = 3.03, p = .003] were significant predictors of EP in a multiple regression model. Additionally, internalized transphobia partially mediated the association between discrimination trauma and EP. Findings reinforce the need for trauma-informed and multiculturally competent provision of services for TNB populations presenting with eating concerns. Results also highlight the complex role that previously unexplored variables play in the etiology of EP for TNB populations. Implications and clinical recommendations are discussed.