3 - (SYM 67) Qualitative Investigation of Stigma Experiences of Individuals Living with Hoarding Disorder

Hoarding disorder (HD) is a public health concern and is associated with treatment ambivalence (e.g., refusal to initiate treatment, dropout, and limited treatment compliance). While low insight and motivation may account for some of the treatment ambivalence, it also could be due to a number of other factors related to how HD is being perceived by others, such as stigma. Stigma is a critical social construct that may obstruct treatment-seeking in HD and therefore serves as a plausible vulnerability factor.

Yet, there is very little research on the relationship between stigma and hoarding, and what these studies have shown is that HD is judged negatively by the general population (i.e., public stigma) in a variety of ways. However, despite these initial findings, there are no in-depth studies examining stigma of HD from the perspective of those with lived experience. Further, previous research of stigma and HD utilized stigma measures that were significantly modified from their original intent to measure severe mental illness, and it is possible that general measures of stigma may not capture the specific features of HD or public perceptions of HD. The present study is a qualitative analysis to investigate stigma pertinent to HD.

This study was conducted in two phases. In Phase I of the study, a measurement development team of four individuals living with HD was recruited to aid in the development of an interview guide. In Phase II of this study, a second team of 17 participants living with HD was recruited and individually interviewed with the interview guide approved by the measurement development group. Statistical analyses included thematic analysis, and the themes found were analyzed within the context of the relevant literature.

Results of this study identified several themes for stereotypes and discrimination specific to HD, as well as how these stereotypes impact functioning in work, home, and relationship domains. About half of individuals indicated that the stigma of hoarding obstructed getting help or seeking treatment for hoarding. This suggests that stigma is an important social factor to explore further and address, as it seems to confer risk for treatment avoidance for some individuals with HD. Overall, this study contributes to the very small body of literature focused on the stigma of hoarding and is one of the first to do so while exploring the perspectives of individuals with lived experience.