The impact of the Coronavirus pandemic on individuals with hoarding disorder and the social services
Primary Investigator: Volen Ivanov, PhD (CNS, Karolinska Institutet & Region Stockholm).
Collaborators: Maricel Knechtel, PhD (Department of Sociology, Uppsala University & Region Uppsala), Erik Andersson, PhD (Region Stockholm), Prof. Susanne Guidetti (Karolinska Institutet), Prof. David Mataix-Cols (Karolinska Institutet), Prof. Christian Rück (Karolinska Institutet), Sofia Jägholm, PhD candidate (Karolinska Institutet).
Funder: Swedish Research Council for Health, Working Life and Welfare (called FORTE in Swedish).
Project duration: 2021-2022.
Project description: This project is part of an ongoing randomized controlled trial (RCT) for individuals with hoarding disorder (HD) that aims to test a treatment that combines CBT for hoarding and home visits of social workers (boendestödjare). See https://samlarsyndrom.se/. During this project, several social workers have reported that some persons with HD are turning down their (regular) home visits, due to fear of being contaminated. Moreover, the pandemic also seems to have had a stressful effect on issues such as planning budgets and staff within the social services, which might affect the execution of the project negatively.
The current project aims to study how persons with HD and the social services’ ability to support these have been impacted by the ongoing coronavirus pandemic. This investigation will help us understand whether an alteration of the RCT study design or the research protocol needs to be done. A secondary purpose is to study how the coronavirus pandemic has affected the health and treatment seeking patterns of individuals with hoarding disorder in general. The impact of the pandemic on individuals with HD has not been studied to date, although some early reports have been alarming. There is thus no data on the general mental health, hoarding symptoms and treatment seeking patterns of individuals with HD. Since this population, in general, is sensitive to stressful events, socially isolated and under-utilizes treatment services, there is a need to address these issues in a structured manner.
This project utilizes two types of surveys. A cross-sectional survey, including an adapted version of the Coronavirus Health and Impact Survey (CRISIS) will be sent to potential participants in the RCT and to individuals with HD in the wider community in Sweden. The survey will include questions about the general mental health, hoarding symptoms and treatment preferences (including acceptability of home visits). A second survey will be sent to all Swedish municipalities targeting different kinds of staff in the social services and will include both standardized and qualitative questions. The survey aims to assess the effects of the pandemic on work tasks and the social services’ ability to provide support to individuals with HD. The survey will also provide us with knowledge about the social services’ methods of working with persons with HD, which to date has not been explored, for instance what kind of help or support the social services in Sweden offers this vulnerable group.