HB Declutter - version 1
Research type
Research Study
Full title
Decluttering the homes of people with hoarding behaviours: Local authority commissioning, professional practices, and user experiences
IRAS ID
315606
Contact name
Jennifer Owen
Contact email
Duration of Study in the UK
0 years, 5 months, 31 days
Research summary
About 2-5% of the UK population has hoarding behaviours. The impacts of hoarding on people and where they live vary. They can include physical health, mental wellbeing, social, relationships, and environmental problems. For example, there may be increased risk of falls, depression, isolation, insect/vermin infestation, eviction, fire, and death. Many people come to the attention of local councils at ‘crisis point’ and helping them requires a lot of resources and well-organised multi-agency approaches. Research advises a ‘slow and steady’ approach to decluttering and cautions against ‘blitzing’ or ‘deep cleaning’, which can cause more distress. We know from previous research that some councils struggle to match up limited budgets and staff shortages with this approach, and sometimes pay professional decluttering services.
We will explore the activity of professional decluttering services for people with hoarding behaviours, investigating contacts with local authorities, how help is organised, and what happens. We will do this by:
1. Identifying and reading any research on the subject (WP1),
2. speaking with local authority social care staff who support people who are hoarding to understand how decluttering services are chosen, used, and managed (WP2),
3. speaking with and observing people who provide decluttering services, and those who have/are receiving this support (funded or signposted to by the local authorities), to understand their experiences and suggestions of what might improve their working with local authorities and other groups (WP3)[N.B. This application for ethical approval only concerns the activities of Work Package 3 (WP3). KCL Minimal Risk Ethical Approval has been granted for WP2.]
We shall then be able to provide new information to local authorities and practitioners, as well as voluntary groups and those supporting people using or thinking about decluttering services, including people themselves and family members.
Lay summary of study results: Decluttering the homes of people with hoarding behaviours: Local authority commissioning, professional practices, and user experiences
Funded by the National Institute for Health and Social Care Research (NIHR) School for Social Care Research (SSCR). Sponsored by King’s College London (KCL).
Research team: Jennifer Owen, Caroline Norrie, Nicole Steils, Stephen Martineau (KCL), Maria Brent (Kingston University), and Megan Karnes (HoardingUK).
Context -
People with hoarding behaviours are estimated to make up 2.5% of the population, and at worst their lives are severely compromised by the volume of possessions, hampering life-functions and leading to potential harm. Risk or harm reduction, by reducing the volume of possessions in the home, is one of three main intervention approaches for people with hoarding behaviours. Research shows that decluttering can be less invasive than clearances or deep cleans (see Steils et al. 2022). Apart from a very small minority of local authorities, decluttering support is not provided by in-house services but commissioned from private professional declutterer professionals or companies. However, there are no specific standards or processes for the commissioning of professional declutterers or measuring outcomes.Research aim and questions -
The overall aim of this exploratory study was to understand the role of professional decluttering services as part of interventions with people who hoard who are known to adult social care.
Within this we had three objectives:
1. To capture what is known from academic and ‘grey’ literature/websites about professional decluttering services,
2. To identity models of practice between local authorities and private decluttering services:
a. How decluttering services are chosen/commissioned,
b. The qualifications and expertise of the professional declutterers,
c. What the service provision entails, including methods of working, charges, and management.
3. To understand the views of people with hoarding behaviours and/or their families on their experiences of decluttering support from professional services.Research methods -
The study took place between 1st August 2022 – 31st December 2023, and was made up of three work packages and a dissemination period. All data collection was based in England.In the first work package we completed a review of professional declutterers’ websites and a review of literature.
For the website review, 65 professional declutterers working with people with hoarding behaviours were identified through the Association of Professional Declutterers and Organisers (APDO) website. Their individual websites were reviewed for any information on the services they offered, referral processes, costs, and qualifications (including DBS). This review informed interview topic guides and analysis of findings.
For the scoping review of academic and grey literature, we searched seven databases using the search terms of ‘hoarding’ and ‘decluttering’, as well as other related terms. 736 titles were identified of which, following the addition of 17 titles from hand-searching, deduplication, and screening at title and abstract, 143 were taken for full-text consideration. Of these 33 publications remained and informed the study. The literature review confirmed evidence gaps and also informed interview topics guides.
In the second work package we conduced semi-structured interviews with 18 professional declutterers and 22 front-line staff. These interviews were granted KCL minimal risk ethics clearance. The topic guides for each group (including interviews with people with hoarding behaviours in the third work package below) covered complementary topics. This meant we gained insights on the same issues from different perspectives.
In the final work package, researchers conducted four go-alongs to the homes of people with hoarding behaviours during their normal decluttering sessions. We also did six interviews with people with hoarding behaviours who had received support from professional declutterers.
Interviews with people with hoarding behaviours had originally been planned to take place after go-alongs, but it was decided that conducting interviews before would help to build a relationship with participants and hopefully mean they were more comfortable about allowing the researcher in their home for the go-along(s).
As well as corroborating interview testimonials, the go-alongs allowed the researchers to observe the aspects of decluttering sessions that had not been mentioned in interviews (including non-verbal communication, and discussions around attachment to individual items).
Public involvement in the study -
This study was supported by two advisory groups: 1) the People With Lived Experience (PWLE) Group and 2) the Stakeholder Advisory Group.1. PWLE Advisory Group
This group was made up of nine people with lived experience of hoarding behaviours and relatives of people with lived experience. Six members of the group had engaged in, and supported, our previous KCL study ‘Social care responses to self-neglect and hoarding among older people: What works in practice?’. Two additional members and the group chair (a person with lived experience of hoarding) were recruited for this study.Throughout the project, advisors have provided insights into living with hoarding behaviour and their experiences and perceptions of support available. The group met three times over the course of the project, acting as critical friends to comment and advise on the research methodologies, ongoing analysis of data, and the development of dissemination materials, in particular commenting on drafts of the illustrations.
2. Stakeholder Advisory Group
This group comprised the chair of the PWLE Advisory Group, along with representatives of the following stakeholder organisations: the charity HoardingUK, the Association of Professional Declutterers and Organisers (APDO), the British Association of Social Workers (BASW), and the National Development Team for Inclusion (NDTi). We invited representatives from the Chartered Institute of Housing (CIEH) and the National Fire Chiefs Council (NFCC), but they were unable to contribute their time.This group met twice during the study period, again providing comments and advice on methodologies, the analysis of data, and dissemination materials and target audiences.
Findings of the research -
This research found that:
• Front-line workers staff (including social workers) have a mixed understanding of the differences between clearances/deep cleans and decluttering.
• The commissioning of professional declutterers (PDs) differs across and within local authorities (LAs), including how a service is chosen, justified against criteria, length of support, and how it is paid for.
• There are no qualifications or expected experience that LAs require in a PD; most are word-of-mouth recommendations.
• Some PDs would like to be more involved in multi-agency meetings.
• Most PDs do more than decluttering in sessions, most commonly cleaning, repairs, and helping with administrative tasks, like paperwork.
• People with hoarding behaviours (PwHB) who develop relationships with their PD, trust them not to judge, push them to dispose of things, and that removed items will go where they have agreed.Please see the NIHR SSCR end of project report for more information.
We thank all participants and advisory group members for their time, trust, and insights.
Outputs from the study -
This study has been presented at the NIHR SSCR conferences in London (2023) and Birmingham (2024), and during a webinar ‘New Perspectives on Hoarding Behaviours... from Psychology, Law & Social Care’ in February 2024 which was organised by project members. This half-day webinar was hosted by Making Research Count and attended by over 680 people. All presentations from the webinar are available here: https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fwww.kcl.ac.uk%252Fevents%252Fnew-perspectives-on-hoarding-behaviours%2FNBTI%2F_Ua4AQ%2FAQ%2F8f3fa903-d806-4926-853a-f30cf6a13e46%2F2%2F4MO5uRQtZG&data=05%7C02%7Ccamberwellstgiles.rec%40hra.nhs.uk%7Cc5e6cc03b2604566140308dcde23f898%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638629493282993591%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=SAc2XKUupkW3srajZL%2BmzGOn0EyoaiT2MlIr7WQ6ugw%3D&reserved=0Six illustrations depicting hoarding and decluttering were produced by Laurie Rollitt with the valuable input of the PWLE advisory group. And there is also an infographic summarising the study on the project web page: https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fwww.kcl.ac.uk%252Fresearch%252Fdecluttering%2FNBTI%2F_Ua4AQ%2FAQ%2F8f3fa903-d806-4926-853a-f30cf6a13e46%2F3%2F7lg2D3LFuB&data=05%7C02%7Ccamberwellstgiles.rec%40hra.nhs.uk%7Cc5e6cc03b2604566140308dcde23f898%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638629493283006162%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=yJ9ClAm6j7Pi2YQijmuceutzVPae6asUEkYeuXzO5Vs%3D&reserved=0
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
23/LO/0117
Date of REC Opinion
22 Mar 2023
REC opinion
Further Information Favourable Opinion