Experiences of eating disorders from the perspectives of patients, family members and health care professionals: a meta-review of qualitative evidence syntheses

Background Eating disorders are serious conditions that cause major suffering for patients and their families. Better knowledge about perceptions of eating disorders and their treatment, and which factors that facilitate or hinder recovery, is desired in order to develop the clinical work. We aimed to explore and synthesise experiences of eating disorders from the perspectives of those suffering from an eating disorder, their family members and health care professionals through an overarching meta-review of systematic reviews in the field. Methods A systematic literature search was conducted in the databases PubMed, PsycInfo, Scopus, and CINAHL. Inclusion criteria were systematic reviews of qualitative research on experiences, perceptions, needs, or desires related to eating disorders from the perspective of patients, family members or health care professionals. Systematic reviews that fulfilled the inclusion criteria were assessed for relevance and methodological limitations by at least two researchers independently. The key findings were analysed and synthesised into themes. Results We identified 17 systematic reviews that met our inclusion criteria. Of these, 13 reviews reported on the patients' perspective, five on the family members' perspective, and three on the health care professionals' perspective. The study population in the reviews was predominantly girls and young women with anorexia nervosa, whilst systematic reviews focusing on other eating disorders were scarce. The findings regarding each of the three perspectives resulted in themes that could be synthesised into three overarching themes: 1) being in control or being controlled, 2) balancing physical recovery and psychological needs, and 3) trusting relationships. Conclusions There were several similarities between the views of patients, family members and health care professionals, especially regarding the significance of building trustful therapeutic alliances that also included family members. However, the informants sometimes differed in their views, particularly on the use of the biomedical model, which was seen as helpful by health care professionals, while patients and family members felt that it failed to address their psychological distress. Acknowledging these differences is important for the understanding of anorexia nervosa and other eating disorders, and may help clinicians to broaden treatment approaches to meet the expectations of patients and family members. Plain English summary The current paper brings together existing knowledge on experiences of eating disorders. We were interested in the views of patients, family members and health care professionals. A literature search identified 17 systematic reviews which addressed these questions. The identified research focused mainly on girls and young women with anorexia nervosa, while research on other eating disorders was limited. Overall, this review suggests that it is important to acknowledge that patients, family members and health care professionals may have different experiences and views regarding treatment of eating disorders, and that it is important to consider all these views in the development of the care of eating disorders.