Experiences of having an eating disorder and perceptions of its etiology: A qualitative study to inform genetic counseling practice

There has been limited research regarding how people with eating disorders (EDs) perceive the causes of these conditions. We conducted an interpretive description study to explore the perceived causes of EDs among individuals with a history of EDs, and to examine how healthcare professionals (HCPs) can provide better care for people with these conditions. We interviewed 15 diverse individuals, with emphasis on gender and racial diversity, with a history of EDs about their perceived etiologies of their EDs, what they wished the public and HCPs knew about EDs, and their thoughts on a 3-min video explaining the multifactorial etiology of EDs. After “line-by-line” coding, themes were used to inductively develop a model to describe individuals' experiences of EDs. Participants' narrative about their experiences of their EDs focused on the condition arising from multiple identity- and environment-related causes, which contributed to a negative cycle of emotions that led to feelings of isolation. Perceptions of the cause of EDs and access to treatment were influenced by systemic issues (e.g., racism, sexism), lack of knowledge about, and stigma associated with EDs. Participants wanted personalized care that acknowledges the factors they perceive to contribute to their ED. Our findings support previous work—showing that the causes of EDs are perceived to be complex, and that shame, stigma, guilt, and self-denial are barriers to treatment. It is important for HCPs to provide holistic, empathic care for people with EDs and acknowledge the systemic issues that affect EDs.