The Family Impact Scale for Hoarding (FISH): Measure development and initial validation

Highlights

• Introduces the FISH: a tool to assess the Family Impact of Hoarding Disorder.

• Details the scale's development and initial item content.

• Examines the factor structure of the FISH.

• Tests the scale's internal consistency, convergent and discriminant validity.

Abstract

Background

The Family Impact Scale for Hoarding (FISH) was designed to assess the disruption experienced, by members of a familial or social circle, due to one individual's hoarding difficulties. The scale was drafted to examine two aspects of impact: accommodation and burden. The current study describes the scale's development and preliminary validation.

Methods

One hundred thirty-four adults, identifying as the relative of someone with problematic hoarding (n=102) or normative collecting behavior (n=32), completed the FISH alongside measures of hoarding severity, burden, functional impairment, and quality of life (QoL). Exploratory factor analysis (FA) was used to examine the scale’s factor structure. Internal consistency, known-groups and convergent validity were also investigated.

Results

FA supported two factors, accounting for 65.43% of variance. Of the scale items, 16 were determined to load onto these factors. Items that did not load were omitted. The revised scale accounted for 67.41% of variance and was characterized by good internal consistency (α=0.86). This measure also differentiated between study groups and demonstrated strong correlations with measures of severity and burden. Regression indicated the FISH better predicted group membership than existing measures of burden, impairment or quality of life.

Discussion

The FISH is a promising measure of family impact in the context of (HD). Its psychometric properties and utility in monitoring outcomes of caregiver-based interventions should be investigated further.

Introduction

Hoarding Disorder (HD) is characterized by profound difficulties discarding possessions, resulting in an extensive and obstructive degree of clutter throughout the sufferers' living environment (American Psychiatric Association, 2013). In addition, the condition is known to produce considerable emotional distress and functional impairment, which impacts not only the person who hoards, but demonstrably those linked to this individual (Tolin et al., 2008a, Tolin et al., 2008b).

A growing body of research has highlighted that severe hoarding is often met with significant reductions in the sufferer's physical health and occupational engagement (Tolin et al., 2008a). The potential for these activities to result in forced evictions, and even homelessness, have also been highlighted in the relevant literature (Rodriguez et al., 2012; Mataix-Cols, Grayton, Bonner, Luscombe, Taylor, & Van Den Bree, unpublished data). In making their case for the recognition of hoarding as a significant mental health problem, studies reporting on these repercussions have largely framed them as a shared societal burden – emphasizing, for example, the economic losses incurred by withdrawal from the work force (Tolin et al., 2008a, Frost et al., 2000). While important, the preponderance of such work throws into sharp relief the limited investigations which have focused on those more immediately impacted by an individual's hoarding behavior: the members of a sufferer’s family.

That hoarding has the potential to impact families is evident. A key feature of hoarding, for example, is the cluttering of living spaces to the extent that their intended use is severely compromised (American Psychiatric Association, 2013). In some cases, this obstruction can become so pronounced that even basic activities (e.g., washing, cooking) are impossible, limiting the sufferer's ability to address the needs of dependents in their household and, in extreme cases, resulting in the removal of these dependents (e.g., children, aging parents) (Tolin et al., 2008b). Such instances are extreme, however reduced rates of marriage and increased rates of divorce have been ubiquitously observed in hoarding populations, offering evidence of more widespread domestic difficulties (Mataix-Cols et al., 2013, Steketee and Frost, 2003, Nordsletten & Reichenberg et al., in press). Additional negative impacts, such as reduced health quality and increased social isolation, have also been noted (Frost et al., 2000, Mataix-Cols et al., 2010, Pertusa et al., 2008).

Looking at these issues, it is tenable that all could have significant bearing on the experience of any individual in a hoarding household – or, indeed, on any person with a stake in the well-being of someone who hoards (e.g., spouse, child, close friend). Reports from those with hoarding difficulties support this interpretation, with the majority of cases acknowledging that their hoarding causes problems among family members (Frost & Gross, 1993). Given the ubiquity of low insight in the hoarding population, it is likely such issues are more widely experienced than even these reports would suggest (Steketee and Frost, 2003, Frost and Gross, 1993, Tolin et al., 2010).

It is little surprise, then, that the small segment of work concerned with hoarding in the family context has focused on the relationship of the sufferer’s insight to the burden experienced by individuals in the environment. For example Tolin et al. (2008b) evaluated childhood distress and current frustration among adult relatives of hoarding individuals. Compared to those raised elsewhere, individuals reared in an environment characterized by clutter during the early years of childhood were more likely to describe their childhoods as difficult and their parental relationships as strained. As adults, these same individuals were more likely to report frustration and rejection of their hoarding family member, with both of these attitudes increasing as the hoarder's level of insight decreased (Tolin et al., 2008b).

These findings have offered the first empirical insights into the burdens experienced by the family members of those who hoard. And while this work benefits from a number of strengths, its unique focus also served to highlight a significant limitation: the absence of a tool suited for assessing the burdens particular to HD. In the absence of such a measure Tolin et al. (2008b) attempted to access burden through a combination of general measures (e.g., the Patient Rejection Scale; Kreisman, Simmens, & Joy, 1979) and questions the researchers designed to assess rejection attitudes and frustration. Though of interest, these “attitudes” do not necessarily correspond to “burden” in a manner that is meaningfully focused on HD. Further, while the questions drafted to examine distress were hoarding-specific, these items focused on childhood experiences (retrospective) and were not subjected to any validation process.

The Family Impact Scale for Hoarding (FISH) was developed to address the lack of validated tools designed to explicitly evaluate the degree and manner in which one individual’s hoarding behavior can impact broader family functioning. In drafting the scale, we conceived of “family impact” as a multidimensional construct and considered that a relative's relationship to the sufferer’s hoarding activities may be an interplay of (1) accommodation and (2) burden. In this context, we defined accommodation as the act of modifying one's behavior for the purposes of preventing distress or conflict with the person that hoards. Burden, meanwhile, was framed as the extent to which someone's life has been generally (e.g., functionally) impacted by a relative's hoarding problem.

This manuscript will present results from a preliminary investigation into this novel scale, with particular emphasis given to examining the factor structure of its 17 closed-response items. As this scale is evaluating a novel topic, a central focus of this investigation will be identifying (or confirming) symptom-relevant factors within the scale, to maximize the utility of the FISH for empirical and clinical use. In addition, this work will examine the relationship of the FISH to general measures of impairment and burden, as well as widely-used measures of hoarding severity.