Eating Disorder Patient Experiences of Volitional Stigma Within the Healthcare System and Views on Biogenetic Framing: A Qualitative Perspective

Abstract

ObjectiveResearch has consistently indicated that fear of stigma is a pertinent factor when understanding the poor prevalence of treatment seeking among individuals with mental illness, particularly eating disorders (EDs). The purpose of this study was to investigate the treatment experiences of ED sufferers within an Australian context, in addition to exploring patient views on framing EDs as biogenetic conditions, given the increased understanding and presentation of EDs as biologically based conditions.MethodsSemi‐structured online data collection was conducted with 35 Australian women with a history of an ED (54.3% in treatment, 45.7% in “recovery” or “recovered”). The data were evaluated using a three‐phased coding system, allowing findings to emerge from significant themes inherent within the raw data (thematic analysis).ResultsTreatment was perceived as traumatic, punitive, blaming, lacking in understanding/education, and overemphasised the physical dimensions of the illness. The experience of volitional stigma in the healthcare system was frequent and expected, and for many sufferers had adverse effects. Biogenetic framing was perceived to be more likely to reduce (rather than exacerbate) stigma, particularly perceptions of volition and personal responsibility. Although reductions in blame and responsibility were welcomed, there was concern that biogenetic explanations could negatively impact recovery by endorsing genetic fatalism and encouraging self‐fulfilling prophecies via genetic essentialism.ConclusionsOverall, findings highlight that attention to volitional stigma within the health system is required (particularly education) and that aetiological framing (with caution and sensitivity) is perceived to be a feasible stigma reduction method by ED sufferers.