A qualitative study of sources of knowledge in individuals with hoarding disorder: The impact of media depictions and social comparisons

Hoarding disorder (HD) affects approximately 2.5% of the population, and is characterized by persistent difficulty discarding or parting with possessions, distress associated with discarding, and resulting clutter or congestion that compromises the utility of living areas. Individuals with HD frequently have poor insight, resulting in difficulty identifying their symptoms as a problem, and relatively few individuals with HD seek and remain engaged in treatment. At the same time, HD has been increasingly prominent in the media, especially in television shows that dramatize the disorder through the depiction of individuals with extreme hoarding symptoms. These shows have both increased public awareness of the disorder and influenced social attitudes surrounding HD. We sought to understand the self-concept of individuals with HD through a qualitative study of their information gathering about HD, the ways they related HD as a disease to their own behavior, and their concept of their behavior as a problem that required treatment. We hypothesized that this process of seeking understanding about HD would play an important role in informing participants’ conception of the breadth and severity of their own symptoms, their own stigmatizing beliefs towards HD, and their willingness to seek treatment. After semi-structured qualitative interviews were conducted with individuals (N = 59) in the United States meeting diagnostic criteria for HD, four main themes were identified: 1) Reacting to media depictions, 2) Identifying HD behaviors in others 3) Quantifying HD behavior in self, and 4) Seeking information and help. From these major themes, several sub-themes emerged, including help-seeking behavior, disgust and distress reactions to HD media, stereotypical beliefs about HD, and motivating experiences through exposure to HD media. Our findings suggest that individuals exhibiting symptoms that meet diagnostic criteria for HD understood HD as a disease primarily through media depictions, although other sources of information were sometimes accessed. They also engaged in comparisons between their own behavior and those of others they thought had HD, and used these comparisons to determine whether their behavior constituted HD or was severe enough to require treatment. Our study suggests that media depictions may have a significant influence on these determinations, and that individuals with HD might benefit from accurate psychoeducation about HD, possibly including the role and/or effect of comparisons between self and others, to help individuals towards seeking treatment.