In June, Rebecca Boswell, PhD, Supervising Psychologist at Princeton Center for Eating Disorders, presented and discussed recent research findings with a global audience at the International Conference on Eating Disorders (ICED). The presentation – “Exploring the Lived Experience of Severe and Enduring Anorexia Nervosa” – focused on the results of semi-structured interviews with 17 patients with SE-AN. It received a Top Abstract Award from the Academy for Eating Disorders.
“We can theorize based on the limited literature available, but we recognize that the best understanding may come from asking patients directly about their own lived experience with SE-AN,” says Dr. Boswell. “Our patients were enthusiastic about participating and generous in sharing their time and feedback.”
During the interviews, patients clearly articulated their perceptions of the causes, negative consequences, and functions of their eating disorder. Precipitating factors identified included trauma, perfectionism, participation in sports, major life events, and biological vulnerability. Negative consequences were related to physical, social, and mental impacts of the eating disorder, while perceived benefits included emotional avoidance and a sense of safety, control, or accomplishment.
Most patients reported prior treatment at multiple levels of care, and shared that the most positive treatment experiences included:
- Patient/provider alignment of treatment goals
- Strong interpersonal relationships
- Support and respect from the treatment team
- Slower pace
While most patients with SE-AN did not report hope for full recovery, every patient reported a desire for an improved quality of life, which often was a motivating factor for admission.
With results suggesting that patients have treatment goals consistent with harm reduction and quality of life improvement, continued research at Princeton Center for Eating Disorders is examining whether adopting a chronic-illness, acceptance-based treatment approach can be beneficial for patients with SE-AN.
“Ultimately as providers, we try to help patients build a life that they are able to maintain, with medical safety at the forefront,” adds Dr. Boswell. “It’s becoming even more clear that for many patients, we may want to forge a more individualized path forward.”