“In an ideal world that would be a multiagency service because you need everybody’s expertise.” Managing hoarding disorder: A qualitative investigation of existing procedures and practices

Catherine Haighton; Roberta Caiazza; Nick Neave

doi:10.1371/journal.pone.0282365

. 2023 Mar 9;18(3):e0282365. doi: 10.1371/journal.pone.0282365

“In an ideal world that would be a multiagency service because you need everybody’s expertise.” Managing hoarding disorder: A qualitative investigation of existing procedures and practices

Catherine Haighton ^1,^*, Roberta Caiazza ², Nick Neave ¹

Editor: Mohammed Ayalew³

PMCID: PMC9997939 PMID: 36893136

Abstract

Hoarding disorder is characterised by the acquisition of, and failure to discard large numbers of items regardless of their actual value, a perceived need to save the items and distress associated with discarding them, significant clutter in living spaces that render the activities associated with those spaces very difficult causing significant distress or impairment in functioning. To aid development of an intervention for hoarding disorder we aimed to identify current practice by investigating key stakeholders existing practice regarding identification, assessment and intervention associated with people with hoarding disorder. Two focus groups with a purposive sample of 17 (eight male, nine female) stakeholders representing a range of services from housing, health, and social care were audio recorded, transcribed verbatim and analysed thematically. There was a lack of consensus regarding how hoarding disorder was understood and of the number of cases of hoarding disorder however all stakeholders agreed hoarding disorder appeared to be increasing. The clutter image rating scale was most used to identify people who needed help for hoarding disorder, in addition to other assessments relevant to the stakeholder. People with hoarding disorder were commonly identified in social housing where regular access to property was required. Stakeholders reported that symptoms of hoarding disorder were often tackled by enforced cleaning, eviction, or other legal action however these approaches were extremely traumatic for the person with hoarding disorder and failed to address the root cause of the disorder. While stakeholders reported there was no established services or treatment pathways specifically for people with hoarding disorder, stakeholders were unanimous in their support for a multi-agency approach. The absence of an established multiagency service that would offer an appropriate and effective pathway when working with a hoarding disorder presentation led stakeholders to work together to suggest a psychology led multiagency model for people who present with hoarding disorder. There is currently a need to examine the acceptability of such a model.

Introduction

Possessions are accumulated over time and serve an important role in defining who we are [1]. Accumulating possessions may be a learnt behaviour, ensuring survival when resources become scare [2]. However, in a minority of cases (1.5%-2% of the population) [3, 4] saving behaviour becomes excessive and disconnected from any apparent function or purpose, and the person hoards uncontrollably [2]. Hoarding disorder has been associated with excessive levels of object attachment defined as psychological or emotional bonds an individual experiences towards an object [1]. In contrast the cognitive-behavioural model conceptualises hoarding disorder as a multifaceted problem stemming from information processing deficits; problems in forming emotional attachments; behavioural avoidance; and erroneous beliefs about the nature of possessions [5].

Hoarding disorder is characterised by the acquisition of, and failure to discard, a large number of items regardless of their actual value, a perceived need to save the items and distress associated with discarding them, significant clutter in living spaces that render the activities associated with those spaces very difficult causing significant distress or impairment in functioning [6, 7]. However, some of the symptoms associated with hoarding disorder can also be part of other health problems such as physical illness, dementia, depression, alcohol and drug misuse, schizophrenia, bipolar disorder, learning disability, autism and related disorders [8].

Hoarding disorder is a social [9], economic [10] and public health problem [9] and people with hoarding disorder experience a significant reduction in quality of life [11]. Hoarding disorder increases the risk of deadly fires [12], eviction [13], pest infestation and the presence of squalor [14]. Hoarding disorder has been highlighted over the last decade as it has featured on popular television programmes and been the focus of entire television series [15] increasing public recognition of hoarding disorder [16]. Cases of hoarding disorder are addressed by multiple community services who have their own procedures and practices in relation to hoarding disorder. In supported housing for example, people with hoarding disorder create a series of challenges relating to health and safety, risk management, and safeguarding [17].

Despite limited formal evaluation [18], community partnerships [19, 20], community response models [21], community task forces [18, 22, 23] and collaborative agreements [24] are growing in popularity internationally particularly in Canada [19–21, 24, 25], the USA [18, 23, 25] and Singapore [22] as a response to the issues of hoarding disorder. These community task forces typically involve multidisciplinary teams from a diverse range of specialisations to alleviate the issues associated with hoarding disorder for individuals. However, these models have not been translated into either UK policy or practice.

In order to aid the development of a possible intervention for hoarding disorder we aimed to identify current practice by investigating key stakeholders’ existing practice with regard to identification, assessment and intervention associated with people with hoarding disorder. This approach allowed us to establish the normal practice of existing intervention structure. We were then able to present a comprehensive summary of current practice to inform the development of an effective intervention. Despite emerging evidence from Canada, the USA and Singapore [18–24] it was important to develop evidence from the UK which operates a very different health and social care system. The UK national health service (NHS) is funded largely out of tax, is mostly free, comprehensive and has a provider sector that is extensively publicly owned and is more comparative to the national health systems of countries such as Italy, Spain, and Portugal.

Normalisation Process Theory (NPT) identifies, characterises, and explains key mechanisms that promote and inhibit the implementation, embedding and integration of new health techniques, technologies, and other complex interventions [26]. NPT defines implementation, embedding, and integration as a process that occurs when participants deliberately initiate and seek to sustain a sequence of events that bring it into operation. The dynamics of implementation processes are complex, but normalisation process theory facilitates understanding by focusing attention on the mechanisms through which participants invest and contribute to them [26]. We believe that, in accordance with NPT [26], new interventions have the best chance of succeeding if they are based on an awareness and active engagement with existing organisational culture and practices therefore NPT influenced data collection methods, topic guide and data analysis. This study was developed in accordance with the Medical Research Council framework for developing complex interventions which specifies that before an intervention is piloted (as is the case for multiagency hoarding services in the UK), evidence-based modelling of the condition, its determinants and points for intervention should be specified [27].

Materials and methods

Focus groups were carried out with a purposive sample (a non-random method of ensuring that categories of cases within a sampling universe are represented in the final sample) of key stakeholders (people with a professional interest or concern in hoarding disorder) regarding the identification, assessment and intervention associated with people with hoarding disorder. Focus groups provided socially negotiated practice examples. The study conforms to the consolidated criteria for reporting qualitative research (COREQ).

Ethics statement

The study received approval from Northumbria University Research Ethics Committee (31/10/2017 Ref 1248) and was conducted according to the principles expressed in the Declaration of Helsinki. Informed written consent was obtained from all focus group participants.

Sample

Key stakeholders were identified from and via an existing hoarding research group (https://www.northumbria.ac.uk/about-us/academic-departments/psychology/research/health-and-wellbeing/hoarding-research/), a multidisciplinary group (48 members) which brings together academics from English Universities, stakeholders from the Local Authorities, Housing Associations, Charities, Social Care Services, Mental Health Services, the NHS, and Emergency Services. Many of the key stakeholders were already members of this group, however members were also called upon to identify further key stakeholders (snowball sampling whereby participants suggest other individuals who could be invited to participate). Judgements about sample size, when to stop data collection and data saturation in thematic analysis are subjective, and therefore could not be determined (wholly) in advance of analysis [28] but based on previous work it was estimated that around two focus groups with 6–8 stakeholders each would provide sufficient data.

Recruitment

Key stakeholders were invited by email by two of the authors (CH, NN) to attend a focus group to be held at a local Fire and Rescue Headquarters in North East England in November 2017. Attached to the email invite was a participant information sheet which provided further details of the research. Participation was entirely voluntary.

Data collection

Each focus group, lasting approximately 75 minutes, was facilitated by two of the authors (CH, NN) trained and experienced in qualitive research. Focus group discussions were based on a flexible topic guide (S1 Text) developed from the existing academic literature and discussion among members of the study team. The topic guide covered how stakeholders identified, assessed, and intervened with people with hoarding disorder. The aim of the research was discussed with the participants before ground rules were established at the start of each focus group, including confidentiality and mutual respect. Immediately following each focus group, participants were provided with a participant debrief sheet reiterating the purpose of the research. Focus groups were audio recorded and transcribed verbatim. Transcripts were fully anonymised, and recordings deleted immediately on transcription. Participants were provided with a copy of the anonymised focus group transcript to check validity.

Analysis

Data were analysed thematically, supported by NVivo software, following the Framework method [29] with constant comparison and deviant case analysis to enhance validity. Data were repeatedly read and coded by one of the authors (CH) within a framework of a priori issues and those identified by participants or which emerged from the data. Analysis was discussed within the research team to identify areas for closer consideration and to enhance credibility of the thematic framework and interpretation.

Results

Seventeen participants (eight males, nine females), from a range of services, volunteered to take part over two focus groups (see Table 1). No one else was present at the focus groups besides the participants and facilitators. The majority of participants were already known to the facilitators via membership of the hoarding research group and therefore had an established working relationship. Those who did not volunteer to participate (n = 31) did not provide a reason for not attending. Four themes were developed from the data. Each theme is outlined below with direct supporting quotations.

Table 1. Characteristics of focus group participants.

Focus Group	ID	Gender	Role	Description	Organisation Type
01	01	Male	Mental Health Recovery Support Community Outreach Team	Supports council tenants with mental health problems in the community to live as independently as possible	Council
01	02	Female	Clinical Psychologist	Supports people, aged 65 or older, seeking specialist assessment and treatment for a mental health difficulty	NHS Trust
01	03	Female	Trainee Clinical Psychologist	In training to work with people of all ages on a wide range of psychological difficulties in mental and physical health	NHS Trust/University
01	04	Female	Wellbeing Coach	Works with people, aged 50 or older, who hoard to dangerous levels	Charity
01	05	Male	Housing Solutions	Coordinates housing register	Council
01	06	Male	Policy and Strategy Manager: Prevention	Home safety checks	Fire and Rescue Service
01	07	Female	Social Worker	Long standing interest in mental health, mental capacity, and adult safeguarding	University
01	08	Male	Clinical Psychologist	Works with children and adults with a variety of mental health difficulties	NHS Trust/University
01	09	Female	Safeguarding Adults Consultant/ Trainer	chairs/authors safeguarding adults reviews and safeguarding adults board	Consultancy
02	10	Male	Community Safety Manager	Responsible for reducing accidental fires and fire deaths through a wide range of prevention activity	Fire and Rescue Service
02	11	Female	Mental Health Social Worker Team Manager	Provides services to individuals who experience mental illness and may have complex, multiple needs	Council
02	12	Female	Older Persons Services Manager	Manages independent living schemes and emergency response service	Housing Association
02	13	Male	Housing Manager	Responsible for antisocial behaviour, safeguarding and hoarding disorder	Housing Association
02	14	Male	Clinical Psychologist	Works with people of all ages on a wide range of psychological difficulties in mental and physical health	NHS Trust/University
02	15	Female	Neighbourhood Housing Operations Manager	Responsible for housing services	Council
02	16	Female	Head Of Housing Support	Responsible for antisocial behaviour, safeguarding and supported housing	Housing Association
02	17	Male	Solicitor	Adult social care law, mental capacity, court of protection, deprivation of liberty law, mental health law.	Council

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There is no consensus understanding of hoarding disorder

Even though all key stakeholders were involved in some capacity with people with hoarding disorder there was a lack of consensus regarding how hoarding disorder was understood within their respective organisation. For many stakeholders, hoarding disorder was simply understood in terms of the risks that it posed for which the stakeholder’s organisation felt they were responsible. So, for example the Fire and Rescue Service understood hoarding disorder in terms of fire risk and the complications that it could cause for both the resident and the fire service:

“For the fire service it’s quite a simple one. It’s anything that is going to cause us problems in the event of a fire. So, although we are concerned with the person, their health and wellbeing, for us it’s predominantly the fact that the hoarding causes an issue in terms of fire risk, which potentially will trap the person in their property, and it will also cause issues for the firefighting activities that go on if they do have an incident.” ID10 Fire and Rescue Service FG2

Many stakeholders reported that hoarding disorder was only identified as a problem if it posed a serious risk to their assets, to their organisation, to others or to the individual with hoarding disorder:

“Sometimes we do find cases where there is hoarding, but as long as we deem it to be not a risk, not impacting on the property, themselves in that sense, the neighbours, we let it go.” ID15 Council FG2

Risks, to some of these organisations, from people with hoarding disorder, were understood in terms of their legal responsibility for preventing the possible negative outcomes from the disorder:

“I think for us as a landlord we are also concerned about the individual but also to do with risk. Corporately speaking from a social landlord who had a tenant killed…we can’t afford that to happen again. And that risk trickles through to corporate organisations like us, to the fire service and if it goes wrong we are all liable.” ID13 Housing Association FG2

Stakeholders also reported that they were seeing different types of hoarding, in particular ‘ordered’ versus ‘chaotic’ hoarding, with the former posing less of a risk and therefore being less likely to be identified as a problem:

“If you can get to the exits that means we can get in they can get out. We can see the state of the electrics. All the bits that would cause a hazard are ok. Ok actually they’ve got a load of stuff but what’s the chance of then having a fire. Somebody who’s got stuff strewn all over we can’t see what’s plugged in, we can’t see where the fires are and they can’t get to the exits.” ID10 Fire and Rescue Services FG2

Within both focus groups there was also considerable discussion relating to ordered hoarding and collecting. When one participant understood hoarding disorder as “when a collection has taken over the home” (ID16 Housing Association FG2) it sparked debate on the importance of making a clear distinction between the two concepts as this could impact on availability of support:

“Well, it is very difficult, because in research they have defined the difference between a collection and a hoard, and there is very distinct difference that are important, because if someone is collecting, they are not eligible for safeguarding or services.” ID09 Consultancy FG1

This was confirmed by a stakeholder who reported how a case of ordered hoarding was not considered to be a problem by a judge when their housing association took their tenant to court:

“Now everything is ordered and we’ve taken her to court and lost and spent a lot of money in losing that case. The district judge said it’s her article 8 human right to live like that if she chooses to do so.” ID13 Housing Association FG2

Many stakeholders reported hoarding to be to be either a “symptom of” (ID10 Fire and Rescue Service FG2; ID17 Council FG2) or a “solution to” (ID11 Council FG2) some other problem making it difficult to treat unless the underlying issue was correctly identified. Many of the health professional stakeholders in the sample reported the importance of correctly diagnosing hoarding disorder so that they could appropriately intervene. It was reported that hoarding could be a symptom of issues with memory (such as dementia), frontal lobe damage, problems with executive functioning, autism, a range of other mental health problems, social issues (not linked to trauma), motivational issues, or trauma:

“When someone says we have a referral for hoarding, the first thing I think is, is it actually hoarding, is it some kind of memory issue, because I work with older people, or is it something more the social issue that is not linked to trauma.” ID02 NHS Trust FG1

Stakeholders reported that there was considerable stigma associated with people with hoarding disorder and stressed the importance of viewing people with hoarding disorder in a non-disapproving manner to improve intervention:

“And I think part of the difficulty…is accepting that we’ve all got a particular view, usually a pejorative view, as to someone who hoards and until we can actually address that in ourselves and get over that, we are always going to approach that person or that situation in a particular way.” ID11 Council FG2

Cases of hoarding disorder are on the increase

Stakeholders reported a wide range of estimates of the number of current cases of hoarding disorder within the region from 24 to 2000. However, all stakeholders agreed that number of cases appeared to be increasing:

“What came from your team about the people that have been identified with possible hoarding, in terms of fire risk, it was more than 2000…and from us mental health, first year I started, I only had the one referral, but now this has been going on, I think we have had 6 referrals just this week for people with hoarding.” ID02 NHS Trust FG1

Increased identification of cases was reported to be because of publicity about the disorder and TV documentaries about hoarding disorder in addition to changes in targeting of services:

“I think, more worryingly, is that because of our change of targeting, because we are quite often a service that is first through the door because there is a type of home safety check, free service that we offer. Because we are…focused on the older person, social isolation, highly vulnerable, known possible live alone…what we have found, definitely an increase in the numbers of hoarders and issues with cluttering.” ID06 Fire and Rescue Service FG1

There was some agreement that the number of cases of hoarding disorder might appear higher in social housing because it was more likely to be identified there:

“It’s because he is in social housing, and every year someone is going in there for one reason or another. Either to do an annual gas safety check or an electrical check because we are duty bound to do that…That is probably why we have more than we know of in social housing than we do in other sectors, because we just don’t know, it’s not that they are not there.” ID16 Housing Association FG2

People with hoarding disorder are more likely to be identified in social housing

The Clutter Image Rating Scale was most commonly used to identify people who needed help for a hoarding disorder, in addition to other assessments relevant to the stakeholder:

“…the clutter scale and then we try and screen the memory using a cognitive assessment, we try do some anxiety, depression assessment, to make sure that we have got everything, to identify, so we try and have a battery of multi, different.” ID02 NHS Trust FG1

“Purely the clutter scale and the perception of fire risk.” ID06 Fire and Rescue Service FG1

Stakeholders reported the importance of assessing capacity from the outset followed by a best interest assessment:

“You know capacity, we have this particular test, that we have to apply. If you are within the test, you know and lack capacity, in legal terms, then we can do things for them. If you are outside, then the law says we can’t…So a best interest’s assessment follows a capacity, if you have capacity, then you know, the question is what do you want to do, as the person that gets to say what happens…you may well be doing exactly the same for someone who has capacity and tells you what they want. And someone who lacks capacity you decide on their behalf. But it might be that they are entirely at odds, and it might be that we can’t work it out as professionals and the person or family might think differently, and we might have to ask a court” ID17 Council FG2

As reported earlier, people with hoarding disorder were commonly identified in social housing where access to the property was required for annual safety checks, secure tenancies (a tenancy which does not have a fixed term or end date) were common and it was difficult to remove tenants without safeguards and scrutiny. However, identifying hoarding disorder in social housing presented a problem to staff when differentiating between hoarding disorder and general neglect of property:

“And one of the challenges that we’ve had is trying to differentiate for housing office staff the difference between what we would class as a “condition of property” type of case and a hoarding case because they’ve got massive differences and some of our officers are going into homes and seeing some home that not well kept and might be a bit cluttered and untidy as not a hoarder and what the difference is.” ID16 Housing Association FG2

Stakeholders reported that people had less time and opportunity to hoard in privately rented housing and that people living in their own property with hoarding disorder were only likely to be identified if a neighbour complained and an environmental health officer, adult social care, the fire, police or ambulance service, or the Royal Society for the Prevention of Cruelty to Animals (RSPCA) became involved and even then, this might not provide a long-term solution:

“Again though, that would be something that is very black and white, stop doing that to the animals or tidy up your backyard, right ok, we are gone again. Until you cause someone else a problem you are not a problem, whereas, with social housing and landlord properties, it is, it is kind of an ongoing thing because we will come back next year.” ID10 Fire and Rescue Service FG2

One stakeholder raised the importance of referring in the correct way so that people with hoarding disorder could be appropriately identified:

“There is a problem in the way that safeguarding referrals come in from people like fire, police and ambulance services because, there is a difference between a safeguarding referral and a vulnerable adult concern form, so we could get in from a local authority, 2000 vulnerable adult concern forms in a month, whereas, we could get maybe, 40–50 safeguarding referrals, but amongst those vulnerable adult concern forms there might be self-neglect that they are not identifying as safeguarding. And they just kind of may get missed or lost or, whatever.” ID09 Consultancy FG1

There was support for a multi-agency approach to intervention

Stakeholders reported that the symptoms of hoarding disorder were often tackled by enforced cleaning, eviction, or other legal action:

“So, everybody would like to see that long-term solution but the reality is, I can’t wait for long-term solutions, so I am going to get together with [housing association] and we will push for an eviction, we will have some support services there if we need it…but in the meantime I am going to work with [housing association] to get an eviction or to force a clear up.” ID10 Fire and Rescue Services FG2

However, stakeholders reported that these approaches were extremely traumatic for the person with hoarding disorder:

“We have a gentleman that we are working with at the moment, and he has been constantly threatened to be evicted because his house is in a terrible state…we have tried to explain…that actually it would be very traumatic for him to go in and just get rid of things.” ID02 NHS Trust FG1

And failed to address the root cause of the disorder:

“But we do that, we do that, we go in, we declutter, we clear out, we get an order, but if you don’t address the underlying cause, it just comes back again. We have all had the cases don’t we, where a couple of years later, it is like oh here we go again.” ID16 Housing Association FG2

Ultimately this resulted in the person with hoarding disorder simply being passed around services:

“I manage now our homeless service in [location] as well that is under our organisation now which is relatively new, but our team that work in the council with private landlords, had took some proactive action around some hoarders in the private rented sector, and ended up serving legal notice and those families were subsequently evicted with no discussion with ourselves prior to that, and so we ended up then with several families coming to us all at once, to say I am homeless, I have been evicted because of this situation. When we looked into it, it was hoarding. We then had a duty to rehouse those families because of all their vulnerabilities, so we have now got those hoarders. The hoarding has never been addressed; we have just inherited the problem.” ID16 Housing Association FG2

Many stakeholders reported that once they had identified a person with hoarding disorder there was a lack of engagement or support from other services:

“And I think that from the housing perspective what we’ve sometimes struggled with is to, is to get that involvement from some of those other specialist support agencies that can start unpicking that. A housing officer can’t go in necessarily and unpick that with an individual and start having that conversation necessarily because more harm could be done than good in that.” ID16 Housing Association FG2

Stakeholders from councils and housing associations reported that social workers and health professionals such as psychologists or psychiatrists would rarely engage with people they identified as having hoarding disorder as they were unable to make referrals directly to mental health services. Stakeholders reported that even when other services were involved “…there’s no real working together”. ID12 Housing Association FG2. While stakeholders reported there was no established services or treatment pathways specifically for people with hoarding disorder, stakeholders were unanimous in their support for a multi-agency approach to working with people with hoarding disorder believing this would be the most cost-effective approach:

“That’s why it is fundamental to always have a multi-agency approach and…if you see hoarding, from my point of view, you should start getting the team ready to go, and then see who is needed…so from our team we always go, as I said, psychology, CPN and support worker because you have got the medical side of things, so if we need to get the psychiatrist involved the CPN can do the initial assessment already, so we speed that up, the support worker can help the clearing because they can help the initial process, and I can work around the trauma. And then if we need to get social services, then they are already aware that we are going to go in, so it is always about having that plan ready to start with because, you can’t be not prepared for what is going on, because these people have been let down, for years. So if you go in and be another one that lets them down, then you are just going to, you have lost them in the beginning.” ID02 NHS Trust FG1

Many stakeholders reported misunderstandings from both the public and within their own organisations particularly regarding timeframes for dealing with people with hoarding disorder:

“I think there is a certain school of thought out there that thinks that we can just, you know, send them a letter and if they don’t comply we can just go in and look them out so to speak which obviously we can’t do…They expect us [to just turn up] and you know, obviously it can take two to three years to work with a particular individual but at the time the neighbours think well the council don’t do anything and they are not interested, they are not bothered.” ID15 Council FG2

Discussion

In our focus groups with key stakeholders from housing, health, emergency services, and social care there was no clear consensus for what constituted a hoarding disorder presentation and therefore each service followed different procedures to manage clutter. Organisations were focused on quickly resolving hoarding disorder by decluttering properties, eviction and other legal action. The repetitive clearing cycles imposed by authorities were traumatic and deleterious, whilst also being ineffective and costly for the various services involved. Organisations focussed solely on the issue most pertinent to them, and this is a major barrier to addressing the underlying causes and multifaceted nature of hoarding disorder. A major concern was the lack of multiagency working, which led to complications managing risk for the individual, the wider public and services dealing with self-neglect. There was significant support for a multiagency approach to hoarding disorder.

One of the earliest reported multiagency approaches, the Clark County Hoarding Task Force (CCHTF) USA, was formed to address the health and safety issues associated with hoarding disorder [23]. The CCHTF was composed of numerous community agencies and groups, including the Health District, local animal cruelty and rescue resources, Code Enforcement, Sheriff’s Office nuisance officers, Adult Protective Services, United Senior Services, the prosecutor’s office, and Mental Health Services, all willing to work together [23].

Research has suggested that interventions conducted by multiple agencies can be especially valuable [30]. Multiagency approaches have been found to help with hoarding disorder and the associated economic and social costs, for example, an integrated community response model for the delivery of resources and support was developed in Edmonton, Canada to provide sustainable support and services to people with hoarding disorder [21]. Authors reported that working together collectively, in a multi-disciplinary fashion, allowed individuals living with hoarding disorder to be respected and provided support to ensure successful intervention [21]. Authors proposed that addressing hoarding disorder through an integrated approach across the lifespan would reduce burden on the health care system [21].

Bratiotis [18] carried out a qualitative study assessing five hoarding task forces in the USA, drawing on perspectives from mental health, housing, social services, emergency services and health agencies. While the task forces showed promise in reducing the negative outcomes of hoarding disorder in the short-term, they were often formed on an ad-hoc or case-by-case basis and lacked a single organisational control mechanism and full organisational commitment. In contrast our study showed significant support for multiagency working and consensus among agencies that this should be a psychology led approach.

While stakeholders in our study did not report issues with children being affected by hoarding disorder Bratiotis [31] noted that multidisciplinary coordination of interventions should include professionals who support children and family as well as the person with hoarding disorder when working with a family with children affected by hoarding disorder,

A hoarding task force and relevant legislation was also introduced in Singapore to address the issue of hoarding disorder in the community [22]. The task force involved the Ministry of National Development, Ministry of Health, Ministry of Social and Family Development, police, Housing and Development Board, Singapore Civil Defence Force, National Environment Agency, People’s Association, and Institute of Mental Health [22]. The task force brought together the expertise and power to better tackle the issue of hoarding disorder in the community [22]. However an exploratory qualitative study conducted among the hoarding task force service providers revealed that they possessed limited authority and enforcement power [32] and authors noted that in the absence of therapeutic or medical intervention and/or community support to address the root cause, hoarding disorder may recur in the cases referred to the task force [22]. This data from Singapore further supports our finding that a multiagency model should be psychology led therefore allowing the approach to address the hoarding disorder to be therapeutically driven.

A collaborative agreement between the main stakeholders (municipal, fire, police, public health and the regional health centre) providing services for the management of severe cases of domestic squalor in rural and semi-urban areas located in Quebec, Canada provided a more personalised and coordinated case management which took into account the individuals environment [24]. This approach decreased the risks associated with a cluttered dwelling as well as allowing the stakeholders to cope with varying degrees of health risks associated with various medical problems [24].

More recently Bodryzlova [20] described a community partnership created to improve the clinical management of hoarding disorder in Canada. The Montreal Compulsive Hoarding Enlarged Committee (MCHEC) brought together 30 partners: service users, health and social care professionals from public and non-profit sectors, and municipal service providers and researchers which contributed to the creation of a common language, attitudes, and expectations among the professionals dealing with hoarding disorder; authors concluded that MCHEC provided the best clinical practices for treatment and advocates for the dignity of the people affected by hoarding disorder [20]. Another approach, the Hoarding Action Response Team (HART) model of a community-based intervention for hoarding disorder involved a partnership between fire prevention and public health in Vancouver, Canada [19]. HART was associated with a reduction in clutter and preservation of tenancy and authors concluded that effective solutions could be realised with a cross-disciplinary and committed team that places the client at the centre of the intervention [19].

Our findings confirm those reported in other similar research for example in a survey of 236 social service staff members in Florida, USA about their experiences with cases involving hoarding disorder respondents reported that hoarding situations were difficult to resolve and involved multiple community agencies [33]. Authors suggested that collaborative interagency protocols were needed to manage hoarding disorder [33]. Another survey of primary mental health services in Quebec, Canada reported health and social services professionals lacked hoarding disorder clinical management tools, training and formal collaboration with municipal (housing, building security, fire prevention) specialists [34]. Once again authors suggested the need for formal collaboration with municipalities and community organisations in order to improve services for people with hoarding disorder [34].

As far as we are aware this is the first UK study to examine stakeholder’s procedures and practices for managing people with hoarding disorder to be able to suggest a psychology led multiagency model for future management, support and treatment. This study not only adds to the existing body of evidence for multiagency approaches to managing hoarding disorder in Canada, the USA, and Singapore but, as the UK operates a very different health and social care system, provides more generalisable evidence for countries with comparative health systems such as Italy, Spain, Portugal, Malta and New Zealand. However, we must also acknowledge the limitations of our approach. While our sample of stakeholders was relatively small, there was a wide variety of organisations involved; however there were some services which were not represented such as the ambulance service and the police. While not every key stakeholder was represented the fact that 17 stakeholders gave up their time to attend these focus groups represents their interest in and commitment to support people with hoarding disorder.

Conclusion

The absence of an established multiagency service that would offer an appropriate and effective pathway when working with a hoarding disorder presentation led stakeholders to work together to suggest a psychology led multiagency model for people who present with hoarding disorder [35]. Caiazza et al. [35] suggested that hoarding disorder requires input from multiple sources, including emergency services, social services, and mental health services. While this multiagency model has only been implemented on an ad hoc basis this has led to positive outcomes backed by case studies [36, 37]. The Ottawa Community Response to Hoarding Coalition similarly recommended that one agency be selected as the central coordinating unit in the network of support for people with hoarding disorder [37]. However social workers or community nurses are typically the chosen coordinators of care, navigators of the system and advocates for patients [38, 39]. Here we recommend a psychology led multiagency model that would allow for diagnosis of hoarding disorder as well as coordination of care based on each patient’s mental stability to cope with intervention. There is currently a need to examine the acceptability of the psychology led multiagency model.

Supporting information

S1 Text. Focus groups topic guide.

(DOCX)

Click here for additional data file.^{(19.4KB, docx)}

Acknowledgments

In addition to all focus group participants, we would like to thank Mia Campbell, George Murray, Vincent Deary, Carole Southall, and Markuu Wood who helped us facilitate the focus groups.

Data Availability

Excerpts of the transcripts relevant to the study are included within the paper, however there are ethical restrictions on sharing the de-identified data set further. The data contain potentially identifying and sensitive participant information and the authors do not have participant consent to share this dataset. Data requests may be sent to Northumbria University Research Ethics Committee (ref 1248) by contacting Laura Hutchinson [laura.hutchinson2@northumbria.ac.uk], Research Policy Manager, Research and Innovation Services, Northumbria University, UK.

Funding Statement

The authors received no specific funding for this work.

References

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PLoS One. doi: 10.1371/journal.pone.0282365.r001

Decision Letter 0

Jamie Males

7 Sep 2022

PONE-D-22-14253“In an ideal world that would be a multiagency service because you need everybody’s expertise.” Best practice for managing hoarding disorder: A qualitative investigation of existing procedures and practices.PLOS ONE

Dear Dr. Haighton,

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The study presents the attitudes and practices of key intervenors in case management of hoarding behaviour. Authors point out that the management of hoarding behaviour in the community is difficult, that attitudes and practices of stakeholders are homogeneous, and that creation of the multiprofessional team might be difficult.

It is a timely and needed study. Its only limit is that it omits the wide international experience in creating multi-professional teams for hoarding disorder around the world. An extensive body of academic and gray literature exists on the topic. Integrating this literature into the introduction and discussion would greatly improve the value of the current work.

In addition, the reading of the paper by a clinical psychologist is desirable in those which concern the distinction between hoarding behaviour and hoarding disorder, as well as more ancient and more recent cognitive models of hoarding disorder.

Title and abstract.

“In an ideal world that would be a multiagency service because you need everybody’s expertise.” Best practice for managing hoarding disorder: A qualitative investigation of existing procedures and practices. Short Title: Best practice for managing hoarding disorder – The title is incorrect. The term “best” practice is the

I would suggest avoiding the term “best practice” as misleading: it evokes clinical guidelines and systematic reviews.

Introduction.

LL 35-36. “’ Possessions are accumulated over time and many of these items are given sentimental value”.

See reasons for hoarding in Moulding, Knight, O'Connor. Also, see the cognitive model of hoarding in Frost and Hartl.

LL 36-37. “such behaviour may be adaptive by ensuring survival when resources become scare”

Interesting tackle, but still unapproved. Sources are needed

LL 38-39 However, in a minority of cases the normal hoarding tendency becomes pathological, and the person hoards uncontrollably

See Nordsletten for the exact proportion of problematic hoarding in overall hoarding behavior.

LL 40-42 “Hoarding behaviours are characterised by: the acquisition of, and failure 40 to discard, a large number of items that are of limited value; significant clutter in living spaces that render the activities associated with those spaces very difficult; and significant distress or impairment in functioning caused by the hoarding behaviours”

The clear distinction between “hoarding behaviour” and “hoarding disorder” is to discuss

LL 43 and further. The term “hoarding” is to avoid. Instead, use either “hoarding behaviour” or “hoarding disorder”, depending on what you mean.

LL 48-52 “Currently there is little information about people who hoard from normative community samples, as such individuals rarely come to the attention of research teams but estimates of its prevalence range from 1.5-6% [5] with a recent systematic review concluding that approximately 2 in every 100 people in the general population meet the criteria for hoarding disorder [6]”

For the prevalence of hoarding behaviour see Chaplin (4%). For the prevalence of hoarding behaviour AND hoarding disorder, see Nordsletten

LL 53 “Hoarding is a social [7], economic [8-9] and public health problem [10-11] and people who hoard experience a significant reduction in quality of life [12]”

First, the references are too old and contain general information on the burden of hoarding. See further works on the hoarding behaviour and risks of fire hazards, evictions, family relationships etc.

See publications on the work of multi-professional teams in Laurentides, Quebec, Montreal, Quebec, and further, as well as hoarding task forces across the USA to put your work in the context of existing initiatives.

See the survey of primary mental health services conducted in Quebec, Canada, to put your work in the context of existing initiatives. The "best practices" is a term to avoid.

LL 63-64. We believe that, in accordance with Normalisation Process Theory [14], new interventions have the best chance of succeeding if they are based on an awareness and active engagement with existing organisational culture and practices.

As you refer to the Normalisation Process Theory, it should be presented, at least in scratch.

Materials and Methods

LL 72 “stakeholders”

The term is to explain shortly here.

International readers might misunderstand it.

Table 1.

The absence of building security and fire protection professionals among stakeholders is surprising. The police services seem to be underrepresented as well. To discuss in limits.

Discussion

The discussion mentions only one study out of many, discussing multi-professional initiatives in hoarding disorder. Large Canadian initiatives, already institutionalized, are overlooked (only in Canada: Saint-Jerome, Montreal, Vancouver, Edmonton).

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Reviewer #1: Yes: Yuliya Bodryzlova

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PLoS One. 2023 Mar 9;18(3):e0282365. doi: 10.1371/journal.pone.0282365.r002

Author response to Decision Letter 0

20 Sep 2022

Reviewer #1: “In an ideal world that would be a multiagency service because you need everybody’s expertise.” Best practice for managing hoarding disorder: A qualitative investigation of existing procedures and practices. The study presents the attitudes and practices of key intervenors in case management of hoarding behaviour. Authors point out that the management of hoarding behaviour in the community is difficult, that attitudes and practices of stakeholders are homogeneous, and that creation of the multiprofessional team might be difficult. It is a timely and needed study.

Thank you for recognising the importance of our study. We appreciate your constructive feedback and have amended our manuscript in light of these comments. We hope you find the manuscript further improved and therefore now suitable for publication. Below is a point by point response to your comments.

Its only limit is that it omits the wide international experience in creating multi-professional teams for hoarding disorder around the world. An extensive body of academic and gray literature exists on the topic. Integrating this literature into the introduction and discussion would greatly improve the value of the current work.

Thank you for this comment. We were not aware of the body of published and grey literature on multi-agency teams for hoarding disorder, particularly the various Canadian initiatives. Based on the information you provided and via forward and backward citation searching we feel that we have now identified this literature, and this has now been added to the manuscript strengthening both the introduction and discussion.

One of the authors (RC) is a clinical psychologist and she has carefully checked the paper particularly in terms of terminology and cognitive models of hoarding disorder. The manuscript relates to hoarding disorder (rather than behaviour) therefore we have amended terminology accordingly throughout the manuscript. Models of hoarding disorder have also been added.

Title and abstract.

We have removed all reference to “best practice” (in both title, short title and throughout the manuscript) as suggested so as not to mislead the reader.

Introduction.

LL 35-36. “’ Possessions are accumulated over time and many of these items are given sentimental value”. See reasons for hoarding in Moulding, Knight, O'Connor. Also, see the cognitive model of hoarding in Frost and Hartl.

Reasons for accumulating possessions have been clarified and referenced along with suggested reasons for hoarding disorder with references (Moulding R, Kings C, Knight T. The things that make us: self and object attachment in hoarding and compulsive buying-shopping disorder, Current Opinion in Psychology. 2021; 39: 100-104/Frost RO, Hartl TL. A cognitive-behavioral model of compulsive hoarding. Behaviour Research and Therapy. 1996; 34 (4): 341-350)

LL 36-37. “such behaviour may be adaptive by ensuring survival when resources become scare”. Interesting tackle, but still unapproved. Sources are needed

The source of this theory has been added. (Grisham JR, Barlow DH. Compulsive Hoarding: Current Research and Theory. Journal of Psychopathology and Behavioral Assessment. 2005; 27(1): 45-52)

LL 38-39 However, in a minority of cases the normal hoarding tendency becomes pathological, and the person hoards uncontrollably. See Nordsletten for the exact proportion of problematic hoarding in overall hoarding behavior.

We have added and referenced the prevalence of hoarding disorder within this sentence using both the Nordsletten citation as suggested (Nordsletten A, Reichenberg A, Hatch S, De la Cruz L, Pertusa A, Hotopf M, Mataix-Cols D. Epidemiology of hoarding disorder. British Journal of Psychiatry. 2013; 203(6): 445-452.) and a more recent systematic review (Postlethwaite A, Kellett S, Mataix-Cols D. Prevalence of hoarding disorder: A systematic review and meta-analysis. Journal of Affective Disorders. 2019; 256: 309-316.)

As previously stated, the manuscript relates to hoarding disorder (rather than behaviour) therefore we have amended terminology accordingly throughout the manuscript.

LL 43 and further. The term “hoarding” is to avoid. Instead, use either “hoarding behaviour” or “hoarding disorder”, depending on what you mean.

Thank you for identifying these inconsistencies in the terminology we have used in the manuscript. As previously stated, this manuscript relates to hoarding disorder, and we have amended the manuscript where possible to avoid use of the term “hoarding”. Please note that we have not made any amendments to participants direct quotations as these have been transcribed verbatim.

As previously stated, this manuscript relates to hoarding disorder. We have added and referenced the prevalence of hoarding disorder within the sentence on line 38-39 as suggested using the Nordsletten citation (Nordsletten A, Reichenberg A, Hatch S, De la Cruz L, Pertusa A, Hotopf M, Mataix-Cols D. Epidemiology of hoarding disorder. British Journal of Psychiatry. 2013; 203(6): 445-452.) and a more recent systematic review (Postlethwaite A, Kellett S, Mataix-Cols D. Prevalence of hoarding disorder: A systematic review and meta-analysis. Journal of Affective Disorders. 2019; 256: 309-316.). This sentence (line 48-52) has therefore been deleted.

LL 53 “Hoarding is a social [7], economic [8-9] and public health problem [10-11] and people who hoard experience a significant reduction in quality of life [12]” First, the references are too old and contain general information on the burden of hoarding. See further works on the hoarding behaviour and risks of fire hazards, evictions, family relationships etc.

Thank you for this suggestion. We have used more recent citations to support this sentence where necessary and have added some more specific consequences of hoarding disorder.

LL 54-56 Complaints of hoarding are addressed by multiple community services who have their own procedures and practices in relation to hoarding. In supported housing for example, people who hoard create a series of challenges relating to health and safety, risk management, and safeguarding [13] See publications on the work of multi-professional teams in Laurentides, Quebec, Montreal, Quebec, and further, as well as hoarding task forces across the USA to put your work in the context of existing initiatives.

Thank you for this comment. We were not aware of the body of published and grey literature on multi-agency teams for hoarding disorder, particularly the various Canadian initiatives. Based on the information you provided and via forward and backward citation searching we feel that we have now identified this literature, and this has now been added to the manuscript in both the introduction and discussion in order to put our work in the context of existing initiatives.

LL 57-59 In order to aid the development of a possible intervention for hoarding behaviours we aimed to identify current best practice by investigating key stakeholders’ existing practice with regard to identification, assessment and intervention associated with people who hoard. See the survey of primary mental health services conducted in Quebec, Canada, to put your work in the context of existing initiatives. The "best practices" is a term to avoid.

We have removed all references to “best practice” (in both title, short title and throughout the manuscript) as suggested so as not to mislead the reader. We have also added additional references, particularly in the discussion, to place our work in the context of existing initiatives including the survey of primary mental health services in Quebec, Canada.

Thank you for this suggestion. A brief, basic description of Normalisation Process Theory has been added to the manuscript.

Materials and Methods

LL 72 “stakeholders”. The term is to explain shortly here. International readers might misunderstand it.

Apologies for this oversight, we have added a brief explanation of the term stakeholders.

Table 1. The absence of building security and fire protection professionals among stakeholders is surprising. The police services seem to be underrepresented as well. To discuss in limits.

Both housing and fire service professionals were well represented on our focus groups, but we agree that the police services were underrepresented however this has already been reported as a limitation.

Discussion

Thank you for this comment. As mentioned previously we were not aware of the body of published and grey literature on multi-agency teams for hoarding disorder, particularly the various Canadian initiatives. Based on the information you provided and via forward and backward citation searching we feel that we have now identified this literature, and this has now been added to the manuscript in both the introduction and discussion in order to put our work in the context of existing initiatives.

Attachment

Submitted filename: Response to reviewer.docx

Click here for additional data file.^{(20.4KB, docx)}

PLoS One. doi: 10.1371/journal.pone.0282365.r003

Decision Letter 1

Joseph Donlan

21 Nov 2022

PONE-D-22-14253R1“In an ideal world that would be a multiagency service because you need everybody’s expertise.” Managing hoarding disorder: A qualitative investigation of existing procedures and practices.PLOS ONE

Dear Dr. Haighton,

Your manuscript has been reassessed by the reviewer from the previous round, as well as one additional expert. As you will see from the comments, the reviewers acknowledge that the manuscript has improved significantly, but there remain some concerns which should be addressed before your manuscript is suitable for publication.

Please submit your revised manuscript by Jan 05 2023 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file.

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Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation.

Reviewer #1: (No Response)

Reviewer #2: (No Response)

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2. Is the manuscript technically sound, and do the data support the conclusions?

Reviewer #1: Yes

Reviewer #2: Partly

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3. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #1: N/A

Reviewer #2: N/A

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4. Have the authors made all data underlying the findings in their manuscript fully available?

Reviewer #1: Yes

Reviewer #2: No

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5. Is the manuscript presented in an intelligible fashion and written in standard English?

Reviewer #1: Yes

Reviewer #2: Yes

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6. Review Comments to the Author

Reviewer #1: The work is much improved. There are some minor corrections left. Thank you very much for the efforts and time you invested in it.

*HD - hoarding disorder.

L21-23. There is an APA definition of HD; there is a discussion on the cut-off point dividing the clinical and non-clinical populations.

L35 – The term "feasibility" is to avoid, it has its reserved maining in health studies.

L 38-48. Rewrite. The idea is good; the text is difficult to understand.

L 49: “limited value” is to redefine. At least, you may put the word in the quotes. The processions are valuable for people with HD.

L 51 The distress is caused by the need to get rid of processions. Possessions themselves are the source of emotional security.

L52-58 I see no need for this phrase. It destroys the logic of your narration.

L70-73: the word "community" is used two times in the same phrase.

L 83-85. The paragraph on the NTP is not clear enough. Some further explications are needed.

L 96 professional interest?

Results

Results: prevalence term has its definition and is to avoid in your context. It would be better to use "number of cases in professional practice", or "number of referrals".

In your results, you are working with the part of the reality presented in your introduction. As such, high attention to HD caused by TV shows should be mentioned in the introduction first. For references, see Tolin and Frost.

Discussion

I would avoid the "definition of HD" as we already have one in the DSM-V. It may be said as "what is the level of the HD severity demanding intervention from …. (name of services).”

Ottawa's report "No room to spare" may give insight on the "ideal" organization of care for HD, as far as we are talking about the ideal world.

The relevance/centrality of normalization process theory to this study was unclear. The definition given on p. 5 sounds good, but how the theory informed the data collection, analysis, or interpretation was not apparent. Lines 83-84 seem to suggest the importance of pilot-testing an intervention after articulating the specific points of intervention – those steps seem to have already been taken by some of the community partnerships, task forces, and response models cited in lines 63-65.

I did not review the original submission, but I can see that many citations have been added to reflect some of the published and grey literature on multidisciplinary intervention teams in other countries. The discussion of those other initiatives and research programs is helpful, but it also adds confusion about the value of the present study. Overall, the rationale and conceptual foundation for the study is unclear. The manuscript points to numerous community-based models for intervention in hoarding that are already being used in other countries. How does this study represent the next step in knowledge about this topic? Why is this type of focus group, with these stakeholders, using the normalization process theory the best path forward to stimulate the creation of the kind of intervention already being used in other countries?

The manuscript does not present much evidence that it relates to hoarding disorder rather than behaviour. Most community-based interventions address hoarding behaviour, as they typically do not assess the psychological factors – such as reasons for saving stuff, whether the stuff was saved intentionally or passively, etc. – that are required to make a diagnosis of hoarding disorder. Quite possibly, the mental health participants in these focus groups would be making hoarding disorder diagnoses, but fire prevention officers and housing officials typically do not conduct assessments that would lead to a diagnosis – such as the reason for accumulating possessions. Is More typically, they’re assessing conditions of the home related to health and safety and adequate maintenance. Without an assessment of the person living in the home (not just conditions of the home), it is not possible to make a diagnosis of any disorder. This was perhaps most evident in the emphasis on the Clutter Scale as a key assessment tool; the Clutter Scale assesses only clutter volume, not any of the reasons how the home came to be the way it is.

The revised manuscript is much improved in providing scholarly and grey literature citations, but the references do not always support the statements in the text. Sometimes, the text implies an empirical study, whereas the citation is for a review paper or chapter or theoretical paper. For example, line 59 implies that the Bratiotis & Woody paper establishes a heightened risk of squalor in hoarding cases, but it does not. Luu et al. (2018; doi: 10.1016/j.jocrd.2018.08.005), Dong et al. (2012; doi: 10.1177/0898264311425597) and John Snowdon’s work from Australia do establish that elevated risk.

Some of the basic information presented about hoarding is not correct. Line 38 implies that hoarding is a synonym for collecting, but it is quite distinct (see Nordsletten et al. 2013, doi: 10.1016/j.comppsych.2012.07.063). The diagnosis in DSM-5 is called hoarding disorder; compulsive hoarding syndrome was an earlier term that is no longer being used. More broadly, I was confused about the heading, “There is no consensus definition of hoarding disorder.” I think many would argue that DSM-5 presents that definition. Based on the quotations provided, it seems like what the stakeholders were discussing is how to use the word “hoarding” - and I would agree there is no consensus definition for what that means in community settings. What is the threshold for referring to conditions in a home as “hoarding”? The quotes seem to suggest a lack of consensus about that.

I also think it is misleading to suggest that publicity about hoarding, including media reports, increases the prevalence of hoarding disorder. Publicity may result in increased case finding or higher caseloads for stakeholders participating in this study, but it is hard to see how it would result in increased prevalence.

I wondered about the generalizability of the messages in this study. The manuscript states that this is the first study of community-based hoarding intervention practices in the UK. Why is that important? How might the UK’s context differ in relevant ways from the context in other countries (e.g., Canada, US, Australia) where this type of intervention has been going on for awhile? Similarly, the rationale for the study provided in lines 68-70 suggests the importance of translating the work done in other countries to the UK situation but does not articulate how this translation process might be of broader relevance beyond the UK. This generalizability seems important for a journal with an international readership.

The Discussion section would be strengthened by being more focused. It presents several interesting points about community-based interventions, but there is no sense of how each one contributes to a larger message.

A more minor question is how was “key” stakeholder defined? What steps were taken to ensure that all the key stakeholder categories relevant to hoarding were represented in the final sample?

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7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files.

If you choose “no”, your identity will remain anonymous but your review may still be made public.

Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy.

Reviewer #1: Yes: Yuliya Bodryzlova

Reviewer #2: Yes: Sheila Woody

**********

PLoS One. 2023 Mar 9;18(3):e0282365. doi: 10.1371/journal.pone.0282365.r004

Author response to Decision Letter 1

14 Dec 2022

Reviewer #1: The work is much improved. There are some minor corrections left. Thank you very much for the efforts and time you invested in it. *HD - hoarding disorder.

We are pleased that you think the manuscript is improved and thank you for suggesting the further minor corrections which we have made. We hope you find the manuscript now suitable for publication.

L21-23. There is an APA definition of HD; there is a discussion on the cut-off point dividing the clinical and non-clinical populations.

Thank you, we have now changed the terminology in relation to our results L21-23 from “definition” to “understanding” and “prevalence” to “number of cases” so that there is no confusion with the APA definition of hoarding disorder and clinical prevalence.

L35 – The term "feasibility" is to avoid, it has its reserved maining in health studies.

Thank you for this comment. We understand your concern and have therefore removed any reference to the term “feasibility”.

L 38-48. Rewrite. The idea is good; the text is difficult to understand.

We have rewritten this paragraph and hope that it is now easier to understand.

L 49: “limited value” is to redefine. At least, you may put the word in the quotes. The processions are valuable for people with HD.

You are correct in highlighting that the possessions are considered valuable to people with hoarding disorder. Therefore, we have amended the phrase “of limited value” to “regardless of their actual value” in line with the DSM definition of hoarding disorder. This phrase has been amended in both the abstract and introduction.

L 51 The distress is caused by the need to get rid of processions. Possessions themselves are the source of emotional security.

Again, you are correct in highlighting that distress is caused by the need to get rid of possessions. Therefore, we have added that there is “a perceived need to save the items and distress associated with discarding them” in line with the DSM definition of hoarding disorder. This phrase has been amended in both the abstract and introduction. We have however retained the phrase “causing significant distress or impairment in functioning” as this is also in line with the DSM definition which states “hoarding causes clinically significant distress or impairment in social, occupational, or other important areas of functioning”.

L52-58 I see no need for this phrase. It destroys the logic of your narration.

Thank you for this suggestion. We have deleted this sentence.

L70-73: the word "community" is used two times in the same phrase.

Thank you for identifying this repetition. We have deleted “in the community at the end of this sentence”.

L 83-85. The paragraph on the NTP is not clear enough. Some further explications are needed.

Apologies if this paragraph was not clear, we have added some further explanation of NPT.

L 96 professional interest?

This is helpful, thank you, we have added that key stakeholders are people with a professional interest or concern in hoarding disorder.

Results

Results: prevalence term has its definition and is to avoid in your context. It would be better to use "number of cases in professional practice", or "number of referrals".

Thank you for this suggestion, we have changed the term “prevalence” to “number of cases”.

Thank you for this comment, we have mentioned in the introduction the increased public awareness of hoarding disorder because of TV shows with appropriate references.

Discussion

I would avoid the "definition of HD" as we already have one in the DSM-V. It may be said as "what is the level of the HD severity demanding intervention from …. (name of services).”

Thank you, we have now changed the terminology used throughout the manuscript from “definition” to “understanding” and “prevalence” to “number of cases” so that there is no confusion with the APA/DSM-V definition of hoarding disorder and clinical prevalence.

Ottawa's report "No room to spare" may give insight on the "ideal" organization of care for HD, as far as we are talking about the ideal world.

Thank you for this suggestion, we have added some details from the “no room to spare” and another similar report in the conclusion section giving insight into the “ideal” organisation of care for hoarding disorder.

Reviewer #2: Thank you for the invitation to review this revised manuscript on community-based interventions for hoarding. The manuscript presents a qualitative study of two focus groups comprised of 17 professionals from mental health professions, housing, fire prevention, law, and protective services. Understanding more about community-based interventions for hoarding is of great societal importance. The relevance/centrality of normalization process theory to this study was unclear. The definition given on p. 5 sounds good, but how the theory informed the data collection, analysis, or interpretation was not apparent.

Thank you for this comment. NPT states that new interventions have the best chance of succeeding if they are based on an awareness and active engagement with existing organisational culture and practices therefore NPT influenced data collection methods, topic guide and data analysis. This has been added to the text.

Lines 83-84 seem to suggest the importance of pilot-testing an intervention after articulating the specific points of intervention – those steps seem to have already been taken by some of the community partnerships, task forces, and response models cited in lines 63-65.

The complex intervention that has been developed from this study is a psychology led multiagency model which, although having some similarities to other community partnerships, community response models, community task forces and collaborative agreements, is novel in that it is psychology led and therefore would need pilot testing. The novel nature of our complex intervention has been highlighted in the conclusion section. In addition, community partnerships, community response models, community task forces and collaborative agreements have not been translated into either UK policy or practice and therefore would need to be piloted in this context (with a very different health and social care system). We have clarified this further in the introduction.

Thank you for this comment. As outlined above the complex intervention that has been developed from this study is a psychology led multiagency model which although having some similarities to other community partnerships, community response models, community task forces and collaborative agreements, is novel in that it is psychology led. The novel nature of our complex intervention has been highlighted in the conclusion section. In addition, community partnerships, community response models, community task forces and collaborative agreements have not been translated into either UK policy or practice and therefore would need to be investigated in this context which has a very different health and social care system to the USA, Canada and Singapore. We have clarified this further in the introduction. In addition, many of the current models are buried within the grey literature and have not been formally evaluated (this has been highlighted in the text) so our study adds to the emerging body of evidence.

Why is this type of focus group, with these stakeholders, using the normalization process theory the best path forward to stimulate the creation of the kind of intervention already being used in other countries?

As stated above and within the manuscript this kind of intervention, while being used in other countries in various forms, has not been translated into either UK policy or practice. In addition, the UK has a very different health and social care system to the USA, Canada and Singapore where most of the other interventions have been developed. Focus groups were chosen as they provided socially negotiated practice examples and key holders were people with a professional interest or concern in hoarding disorder who were involved in some capacity with people with hoarding disorder. NPT influenced these data collection methods, topic guide and data analysis as NPT states that new interventions have the best chance of succeeding if they are based on an awareness and active engagement with existing organisational culture and practices. This has been clarified throughout the manuscript.

Thank you for this comment. The manuscript focusses on hoarding disorder as the purpose of the psychology led multiagency model would be to allow for diagnosis of hoarding disorder as well as coordination of care based on each patient’s mental stability to cope with intervention. However, as you have rightly identified some of the agencies involved will be dealing with hoarding behaviour prior to any diagnosis however the consensus was that key stakeholders would benefit from a psychology led multiagency model to allow for diagnosis.

Thank you for highlighting this. The citation supporting the statement on line 59 has now been changed to Luu M, Lauster N, Bratiotis C, Edsell-Vetter J, Woody SR. Squalor in community-referred hoarded homes. Journal of obsessive-compulsive and related disorders. 2018; 19: 66-71. All other references have been checked for appropriateness.

Thank you for highlighting this. We did not intend to imply that collecting and hoarding were the same thing. We have deleted the reference to collecting on line 38.

The diagnosis in DSM-5 is called hoarding disorder; compulsive hoarding syndrome was an earlier term that is no longer being used. More broadly, I was confused about the heading, “There is no consensus definition of hoarding disorder.” I think many would argue that DSM-5 presents that definition. Based on the quotations provided, it seems like what the stakeholders were discussing is how to use the word “hoarding” - and I would agree there is no consensus definition for what that means in community settings. What is the threshold for referring to conditions in a home as “hoarding”? The quotes seem to suggest a lack of consensus about that.

Thank you, we have deleted the sentence which refers to compulsive hoarding syndrome. We have also changed the terminology used throughout the manuscript from “definition” to “understanding” and “prevalence” to “number of cases” so that there is no confusion with the APA/DSM-V definition of hoarding disorder and clinical prevalence.

Thank you for this comment. We have added a sentence in to the introduction regarding how publicity about hoarding has increased the public recognition of hoarding disorder. We have also amended the results to read “increased identification of cases was reported to be because of publicity about the disorder and TV documentaries about hoarding disorder”.

Thank you for highlighting this. We have added to the introduction and the discussion the importance of this research to the UK and how the UK’s context differs in relevant ways from the context in other countries (e.g. Canada, the USA, Australia) where this type of intervention has become institutionalised. We have also discussed the generalisability of our results.

Thank you for this suggestion. We have amended the discussion and conclusion sections in order to provide more focus and relevance to our findings. We hope you find these sections improved.

A more minor question is how was “key” stakeholder defined? What steps were taken to ensure that all the key stakeholder categories relevant to hoarding were represented in the final sample?

As stated in the manuscript, key stakeholders were defined as people with a professional interest or concern in hoarding disorder. Key stakeholders were identified from and via an existing hoarding research group (https://www.northumbria.ac.uk/about-us/academic-departments/psychology/research/health-and-wellbeing/hoarding-research/), a multidisciplinary group (48 members) which brings together academics from English Universities, stakeholders from the Local Authorities, Housing Associations, Charities, Social Care Services, Mental Health Services, the NHS, and Emergency Services. Many of the key stakeholders were already members of this group, however members were also called upon to identify further key stakeholders. While our sample of stakeholders was relatively small, there was a wide variety of organisations involved; however we have acknowledged as a limitation that there were some services which were not represented such as the ambulance service and the police.

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PLoS One. doi: 10.1371/journal.pone.0282365.r005

Decision Letter 2

Mohammed Ayalew

16 Jan 2023

PONE-D-22-14253R2“In an ideal world that would be a multiagency service because you need everybody’s expertise.” Managing hoarding disorder: A qualitative investigation of existing procedures and practices.PLOS ONE

Dear Dr. Haighton,

Please submit your revised manuscript by Mar 02 2023 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file.

Please include the following items when submitting your revised manuscript:

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A marked-up copy of your manuscript that highlights changes made to the original version. You should upload this as a separate file labeled 'Revised Manuscript with Track Changes'.
An unmarked version of your revised paper without tracked changes. You should upload this as a separate file labeled 'Manuscript'.

We look forward to receiving your revised manuscript.

Kind regards,

Mohammed Ayalew

Academic Editor

PLOS ONE

Journal Requirements:

Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. If you need to cite a retracted article, indicate the article’s retracted status in the References list and also include a citation and full reference for the retraction notice.

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Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

Reviewer #1: All comments have been addressed

Reviewer #2: (No Response)

**********

2. Is the manuscript technically sound, and do the data support the conclusions?

Reviewer #1: Yes

Reviewer #2: Yes

**********

3. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #1: N/A

Reviewer #2: N/A

**********

4. Have the authors made all data underlying the findings in their manuscript fully available?

Reviewer #1: Yes

Reviewer #2: (No Response)

**********

5. Is the manuscript presented in an intelligible fashion and written in standard English?

Reviewer #1: Yes

Reviewer #2: Yes

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6. Review Comments to the Author

Reviewer #1: I have no comments. Thank you for addressing all comments and recommendations. Hope your results will contribute to the institutionalization of multidisciplinary teams for HD and the formal evaluation of their work.

Reviewer #2: Thank you for the invitation to review another version of this manuscript. It is much improved, particularly with regard to the rationale and conceptual underpinnings of the study. The explanation of NPT and how that relates to the study is much clearer now. The various miscommunications that I raised in my previous review have all been addressed. The Discussion section is now clear and succinct.

I have a few minor remarks that the authors may wish to address.

In the first few lines of the Introduction, the language makes it unclear just how the authors define “hoarding”. On line 39, the manuscript states, “humans show a strong tendency to hoard possessions”. The associated reference does not establish this statement as fact (and I suppose it depends on how one defines “hoard”). If this statement is broadly true, then why is the prevalence of hoarding so low? On line 41, the manuscript refers to “normal hoarding tendency”, although what this is remains unclear. I have seen hoarding defined rather broadly as keeping more of something than is needed in the moment (sorry I can’t find the reference). From this perspective, a home pantry or freezer represents hoarding. If this (or something like it) is the meaning of hoarding that the authors intend at the outset of the Introduction, it would be helpful to clarify that because most of the paper is focused on problematic accumulation of possessions.

Lines 71-72 state that “Many of these task forces have become institutionalised within [the US, Canada, and Singapore]”. I’m not sure what it means for a task force to “become institutionalized”, but I’m not sure that has happened in the US and Canada. (I can’t speak about the situation in Singapore.) There are numerous community responses to hoarding in various municipalities, but in practice these interventions have precarious funding and remain difficult to access. [As an aside, and as demonstration that the manuscript has ignited my interest and curiosity, I am aware of very few formal policies related to hoarding (the few examples that I can recall are limited to housing providers), although of course formal policies would be very helpful. Another difference between the situation in the US and Canada and what I think you’re proposing for the UK is that in the US and Canada, these community-based approaches are typically approached from the perspective of tenancy preservation or fire prevention rather than as health care.]

Line 259 makes reference to the Clutter Scale. I think this is referring to the Clutter Image Rating scale. If that’s correct, it would probably be better to use the full name so interested readers can more accurately access it online.

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7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files.

If you choose “no”, your identity will remain anonymous but your review may still be made public.

Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy.

Reviewer #1: Yes: Yuliya Bodryzlova

Reviewer #2: Yes: Sheila R. Woody

**********

PLoS One. 2023 Mar 9;18(3):e0282365. doi: 10.1371/journal.pone.0282365.r006

Author response to Decision Letter 2

18 Jan 2023

Thank you for taking the time to look at our manuscript again, we have addressed the minor remarks and hope the manuscript is now suitable for publication.

Thank you for all your help improving the manuscript.

Thank you also for your help improving the manuscript.

I have a few minor remarks that the authors may wish to address.

Thank you for these comments. The manuscript does indeed focus on hoarding disorder, but we wanted to start by explaining that the accumulation of possession can be a normal human response until it becomes problematic. To clarify this further we have removed the sentence on line 39 which stated that “humans show a strong tendency to hoard possessions” and have amended the wording of the next sentence so that it reads “accumulating possessions may be a learnt behaviour, ensuring survival when resources become scare”. In addition we have removed reference to “normal hoarding tendency” so this sentence now reads “However, in a minority of cases (1.5%-2% of the population) saving behaviour becomes excessive and disconnected from any apparent function or purpose, and the person hoards uncontrollably.”

Thank you for this useful comment, we have removed the sentence suggesting community task forces have become institutionalised.

Thank you for this suggestion, we are indeed referring to the Clutter Image Rating Scale, so we have used the full name on line 259 as well as in the abstract.

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PLoS One. doi: 10.1371/journal.pone.0282365.r007

Decision Letter 3

Mohammed Ayalew

14 Feb 2023

“In an ideal world that would be a multiagency service because you need everybody’s expertise.” Managing hoarding disorder: A qualitative investigation of existing procedures and practices.

PONE-D-22-14253R3

Dear Dr. Haighton,

We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements.

Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication.

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If your institution or institutions have a press office, please notify them about your upcoming paper to help maximize its impact. If they’ll be preparing press materials, please inform our press team as soon as possible -- no later than 48 hours after receiving the formal acceptance. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org.

Kind regards,

Mohammed Ayalew, MSc

Academic Editor

PLOS ONE

Additional Editor Comments (optional):

Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

Reviewer #2: All comments have been addressed

**********

2. Is the manuscript technically sound, and do the data support the conclusions?

Reviewer #2: (No Response)

**********

3. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #2: (No Response)

**********

4. Have the authors made all data underlying the findings in their manuscript fully available?

Reviewer #2: (No Response)

**********

5. Is the manuscript presented in an intelligible fashion and written in standard English?

Reviewer #2: (No Response)

**********

6. Review Comments to the Author

Reviewer #2: (No Response)

**********

7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files.

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Reviewer #2: Yes: Sheila Woody

**********

PLoS One. doi: 10.1371/journal.pone.0282365.r008

Acceptance letter

Mohammed Ayalew

28 Feb 2023

PONE-D-22-14253R3

“In an ideal world that would be a multiagency service because you need everybody’s expertise.” Managing hoarding disorder: A qualitative investigation of existing procedures and practices.

Dear Dr. Haighton:

I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now with our production department.

If your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information please contact onepress@plos.org.

If we can help with anything else, please email us at plosone@plos.org.

Thank you for submitting your work to PLOS ONE and supporting open access.

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on behalf of

Mr Mohammed Ayalew

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PLOS ONE

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

S1 Text. Focus groups topic guide.

(DOCX)

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Data Availability Statement

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“In an ideal world that would be a multiagency service because you need everybody’s expertise.” Managing hoarding disorder: A qualitative investigation of existing procedures and practices

Catherine Haighton

Roberta Caiazza

Nick Neave

Roles

Abstract

Introduction

Materials and methods

Ethics statement

Sample

Recruitment

Data collection

Analysis

Results

Table 1. Characteristics of focus group participants.

There is no consensus understanding of hoarding disorder

Cases of hoarding disorder are on the increase

People with hoarding disorder are more likely to be identified in social housing

There was support for a multi-agency approach to intervention

Discussion

Conclusion

Supporting information

Acknowledgments

Data Availability

Funding Statement

References

Decision Letter 0

Jamie Males

Roles

Author response to Decision Letter 0

Decision Letter 1

Joseph Donlan

Roles

Author response to Decision Letter 1

Decision Letter 2

Mohammed Ayalew

Roles

Author response to Decision Letter 2

Decision Letter 3

Mohammed Ayalew

Roles

Acceptance letter

Mohammed Ayalew

Roles

Associated Data

Supplementary Materials

Data Availability Statement

ACTIONS

PERMALINK

RESOURCES

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