Research
An exploration of hoarding in autism and the potential role of intolerance of uncertainty.
Invitation to take part:
You have been invited to take part in this research study which is investigating hoarding behaviours within autistic individuals. This study is being conducted as the research project required as part of my Doctoral training in Clinical Psychology at Newcastle University, UK. This project is being supervised by Dr. Fiona Gullon-Scott (Newcastle University) and Professor Nick Neave (Northumbria University).
Before deciding whether you agree to take part it is important for you to understand why the research is being done and what it will require from you. Please read the following information carefully before taking the time to decide if you would like to participate. If there is anything you do not understand or you have further questions before taking part, please do not hesitate to contact me.
What is the purpose of the research?
Phase two of the study aims to explore professionals’ experiences of working with hoarders with a diagnosis of (or suspected autism) and if/ how this differs from hoarding within the neurotypical population. It is hoped that this may allow for exploration of more extreme cases of hoarding in which research may struggle to target this population directly.
What does taking part in this research involve?
After reading through this information, you will be asked if you give your consent to take part in this study. If you choose to participate in the study, you complete the consent form you have been sent and return this to the principal researcher.
If you choose to participate in this study, you will arrange a convenient time to meet with the principal researcher via MS Teams (please note, that if you feel an in-person meeting is needed this may be requested). They will conduct a semi-structured interview with yourself with the aim of finding out more about hoarding in individuals with autism and how this may differ from or share similarities to those who are neurotypical. The interviews will be completed by the Principal Researcher (Rachel Jackson, Trainee Clinical Psychologist). Interviews will be recorded via MS Teams (or using a digital audio recording device if an in-person meeting is requested) and transcribed following this.
How much time will this take?
It is hard to estimate how long each individual interview will take, as though some questions will be pre-prepared, follow up questions may be asked in response to the interviewees answers. It is expected that the interviews may take approximately 60 minutes.
Why have I been invited to take part?
You have been invited to take part in this research as you have been identified as a professional whose work involves (or has involved in the past), working with individuals who display difficulties with hoarding, including those who have a diagnosis of Autism or it is suspected that they are Autistic.
Do I have to take part?
Your participation in this study is voluntary and you do not have to take part. If you decide to participate in the study but change your mind, you may withdraw without giving any reason.
Is there any reason why I shouldn’t take part in this research?
You should not take part in this study if you do not work or have never worked with individuals who display difficulties with hoarding or have never worked with those displaying difficulties with hoarding who have a diagnosis of Autism or it is suspected that they are Autistic.
What information will be collected?
You will be asked a number of questions regarding differences in hoarding behaviours between those who have a diagnosis of Autism (or are suspected to be Autistic) and those who are neurotypical. These questions have been formed from a focus group of professionals with interests in and who are working with hoarding.
You may also be asked further questions depending on your responses, to gain further information. Your responses will be recorded via MS teams, with recordings being deleted following transcription. Your responses will be anonymised at this stage.
Will my information be kept private and what will happen to it?
All data collected will remain strictly confidential. All information is anonymised meaning that you cannot be personally identified from this within any reports or publications that may follow from this. Data will be stored on Newcastle University’s secure cloud storage. This may only be accessed by the research team.
What are the possible benefits of taking part in this study?
The research will help us to learn more about how hoarding presents in autistic individuals. Current models of hoarding are based on a neurotypical population. It is unclear if this is reflective of an autistic population. This study, therefore, aims to gain a clearer understanding of this by exploring the experiences of professionals working in this area. You will also be offered a £10 Amazon e-voucher to thank you for your participation in the study.
What are the potential disadvantages of taking part?
It is not expected that the study will cause any distress or harm. Interviews will be delivered via MS teams (unless requested otherwise). It is hoped that this will ensure minimal disruption to your working day. However, should you require alternative arrangements you may contact the Principal Researcher or Research Supervisor to request these.
What happens if I wish to withdraw from the study?
You may withdraw from the study at any point, including after completion, up until the point of data analysis. You may do so by contacting a member of the research team via the contact details given.
What happens with the results from the study?
The results of the study will be written up into a report as a requirement of the Clinical Psychology Doctorate Programme. This will also be presented within the Newcastle University Research Conference. It is possible that the resulting report may be written up for publication in a peer-reviewed journal.
Has this study received ethical approval?
This study was approved by the Faculty of Medical Sciences Research Ethics Committee, part of Newcastle University’s Research Ethics Committee. This Committee includes members who are internal to the faculty. This study was reviewed by members of the Committee, who must provide impartial advice and avoid significant conflicts of interests.
Who is funding the study?
The study is being funded by Newcastle University, UK.
Who should I contact if I wish to make a complaint?
Should you wish to make a complaint about the study, you may contact the Principal Research or Research Supervisor.
Who can I contact for further information relating to this research?
If you have any further questions or would like any further information about the study, you may contact either of the following:
Rachel Jackson (Principal Researcher): r.e.jackson2@newcastle.ac.uk
Dr Fiona Gullon-Scott (Research Supervisor): Fiona.gullon-scott@newcastle.ac.uk
Thank you for taking the time to read this information. A £10 Amazon e-voucher will be provided as a thank you for taking part.
This project has ethical approval from Newcastle University’s Research Ethics Committee: Ref. 2539/30900/2021
Beliefs about possessions
About the study
There are many reasons why someone may decide to buy or keep an item. For example, they may buy a painting because they consider it to be beautiful. They may find it difficult to throw out clothes as they recall memories of wearing them. Research suggests that these sorts of beliefs play a role in Hoarding Disorder (HD). Individuals with Hoarding Disorder take a lot of objects into their home, but find it difficult to get rid of any. This can lead to clutter in living spaces, making it difficult to do household tasks like cooking and cleaning. To be best able to support these individuals, health professionals need a way of asking about these kinds of beliefs. This will support them in understanding why they may be taking in objects and finding it difficult to get rid of them. This study intends to evaluate a new questionnaire which captures these beliefs about possessions, by asking a large number of individuals to complete questionnaires. These individuals may have personal experience of difficulties associated with hoarding or obsessive-compulsive disorder (OCD). Individuals who do not identify with these difficulties or any other mental health concernsare also eligible to participate. This will enable us to evaluate how well the new questionnaire measures beliefs about possessions.
We hope to further our understanding of difficulties associated with hoarding by evaluating a new questionnaire which assesses people’s beliefs about their possessions. To be able to do this, we are inviting those who experience difficulties associated with hoarding or obsessive compulsive disorder, and those who do not identify with these difficulties or any other mental health concerns, to participate in this study.
Taking part will involve answering questionnaires online for approximately 30 minutes.
We will ask you if you are happy to be contacted again in two weeks time to complete another, shorter survey (approximately 10 minutes) – this is entirely voluntary.
After each survey, you will be offered the chance to enter a prize draw – chance to win one of eight £25 vouchers.
If you have any questions, or are interested in taking part, please email smitha103@cardiff.ac.uk
Alisha Smith (Trainee Clinical Psychologist; Lead Researcher)
Dr James Gregory (Clinical Psychologist, Research Supervisor)
Ethical approval provided by SREC, Cardiff University, approval number EC.23.02.07.672
Do you offer support to someone with OCD or hoarding difficulties? Can you support this research study?
About the study
We are looking for volunteers, aged 30+ years old, to answer a survey about offering support to individuals with Obsessive Compulsive Disorder (OCD) and/or hoarding difficulties.
The person being offered support does not need to have a formal diagnosis of OCD and/or hoarding difficulties. The person may be accepting the support you are offering or not.
To take part, you must know the person with OCD and/or hoarding difficulties well, e.g., a family member or friend you have known for a number of years. The person must also be aged 30+ years old. You and the person being offered support must live in the UK.
Please note that you may only participate in this survey if:
- You are 30 years of age or over.
- You live in the UK.
- You offer support to somebody with hoarding difficulties and/or OCD that you have a personal connection to, e.g., a family member or friend you have known for a number of years.
- The person you offer support to is 30 years of age or over.
- The person you offer support to lives in the UK.
Learning more about offering support to these individuals will help mental health services to plan more effective treatments and consider how best to involve those who support them.
You are invited to participate in an online study. The questions will take about 30 minutes of your time.
If you are interested and would like more information, please contact James Dennis at the Oxford Institute of Clinical Psychology Training and Research by email:
There is no obligation to take part.
To access the study, click this link: https://oxicptr.web.ox.ac.uk/help-our-research
Thank you!
Holding on to Support
Ethics Approval Reference: R86617/RE001
Decluttering the homes of people with hoarding behaviours: Local authority commissioning, professional practices, and user experiences.
About the study
The purpose of the project is to understand the role of professional decluttering services as part of interventions with people who hoard, and who are known to adult social care. It aims to find out about:
- The prevalence and nature of decluttering services in the UK which support people with hoarding behaviours.
- How decluttering services are chosen, used, and managed by local authorities.
- The experiences of those giving and receiving decluttering support.
The project is funded by the National Institute for Health and Care Research (NIHR) School for Social Care Research (Grant ref. 102645/CM/KCLJM-P208). It is being undertaken by researchers from King’s College London, Kingston University, and HoardingUK.
Who are we inviting to take part?
We are inviting people to take part who are currently receiving, or have previously received, support with decluttering from a professional.
This will have been arranged by your local authority or another statutory service (adult social care, environmental health, housing, mental health, fire & rescue, children’s social care) or an affiliated voluntary or third sector organisation.
What would taking part involve?
If you choose to participate in the project, there are two parts. You can take part in both stages or one of the two:
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- A researcher will visit you at home, on one or two occasions, for the duration of your normal scheduled decluttering session with your professional declutterer. The researcher would largely be observing but might ask quick questions to understand what you are doing a bit better. They will take notes after they have left your home; they will not be standing there with a clipboard or use a recording device. Both you and your professional declutterer will need to consent to taking part in the research visit for it to go ahead. You can decide after the first if you (and your professional declutterer) are happy for the researcher to attend a second session.
- In the interview, we would ask you about how you started receiving support with managing your possessions, how that fits with other support you have been offered or received, and how you found taking part in the sessions. We think the interview will take up to 60 minutes, depending on how much you would like to say. The interview would take place via a virtual call on Microsoft Teams or phone call, or in-person somewhere you choose, and, with your consent, would be audio recorded.
As a thank you for your time, we will give you a High Street shopping voucher worth £20 as a small ‘thank you’ for taking part in each bit of the study (up to a maximum of £60 for the researcher attending two decluttering sessions, and one interview).
How do I take part?
If you are interested in taking part, and for more information, please contact jennifer.owen@kcl.ac.uk
Ethical Approval: This project has been reviewed by the Health Research Authority Social Care Research Ethics Committee (IRAS ref. 315606).
Exploring the Experience of Early Attachment Relationships on the Onset, and course of, Hoarding Disorder
About the Study:
Studies suggest there is a link between the development of hoarding behaviours and the attachment relationships we form in childhood. We would like to add depth to our understanding of this by talking to the people who are experiencing hoarding disorder about their attachment relationships. We hope this research will aid future research and guide treatment development.
What will I be doing if I decide to take part?
You’ll be asked to complete a questionnaire about yourself and your hoarding behaviours. Participants can provide their email address at the end of this questionnaire for a chance to win 1 of 3, £10 amazon gift vouchers in a prize draw.
After this, if you meet our inclusion criteria (below), you will then be invited to take part in an online interview with me, lasting around 1 hour. All participants who complete the interview will receive a £15 amazon voucher for their time.
Can I take part?
To take part, you need to be:
• Over 18 years old
• Fluent in English
• Live in the UK
Anyone over the age of 18 can complete the study, as the questionnaire will screen people in or out at an early stage based on the severity of their hoarding and clutter. The study is open to anyone who is fluent in English and living in the UK. You do not need to have a diagnosis of hoarding disorder to take part.
Keywords: psychology, Newcastle University, Hoarding, hoarding disorder, attachment relationships
Ethics: This study has been granted ethical approval by the Ethics Committee at Newcastle University. Ref: 22528/2022
About the researcher: My name is Lin Stevenson and I am a trainee clinical psychologist studying at Newcastle University and working for Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust. This study is for my doctoral thesis.
Contact details: Lin Stevenson
This study is supervised by Dr Claire Lomax (DClinPsy Programme Director, Newcastle University) and Dr Rowan Tinlin (Clinical Psychologist, CNTW NHS Trust).
Why do people hoard?
I am currently a student attending Rugby College studying an Access to Health Professions Course with the intention of going to university to study a psychology degree.
I have an interest in hoarding disorder, therefore I am starting my research into this area for my study skill project.
Introduction:
A hoarding disorder is where someone acquires an excessive number of items and stores them in a chaotic manner, usually resulting in unmanageable amounts of clutter. The items can be of little or no monetary value.
(NHS) Hypothesis:
Why do people hoard and what impact does this have on the hoarder and their families?
I would like to people to help complete my questionnaire. All answers are confidential and anonymous.
Thank you
Gemma Evans
Do objects influence how people with hoarding difficulties remember their experiences?
We are looking for adult volunteers to take part in an online study investigating Hoarding Disorder. People with Hoarding difficulties struggle to discard possessions, to the extent that living spaces become excessively cluttered.
The aim of this research is to find out more about how people with Hoarding Disorder recall memories.
Who can take part?
- We are looking for people to take part who are currently experiencing hoarding difficulties and identify this as their main problem
- We are also looking for people who are currently experiencing anxiety (including OCD, panic, agoraphobia, social anxiety, GAD and health anxiety)
- We are also recruiting people who are not currently experiencing mental health difficulties
Unfortunately, this study isn’t suited for anyone who:
- has been diagnosed with any organic brain injury or neurological disorder
- has undergone electroconvulsive therapy (ECT) in the past or at present
- is under the age of 18
- is currently receiving psychological talking therapy
- is not able to read or speak English
- is currently dependent on substances (not prescribed medication)
What will taking part involve?
You will be asked to complete a series of online questionnaires, followed by an online memory task. This task will involve recalling a memory based on a word or image cue.
How long will it take?
It will take between 30 and 60 minutes to complete the questionnaires and online task.
As a thank you for your time, if you choose to provide your email address and complete the study, you will receive a £5 Amazon eVoucher. If you do not wish to provide your email address, the £5 will be donated to charity at the end of data collection for the study.
How do I take part?
If you would like to take part, and for more information, please email.
Ethical Approval: This study has received ethical approval from the University of Bath Psychology Research Ethics Committee (Reference: 21-047)
Rising from the Hoard: Exploring the connection between a hoarded childhood and resilience
I am currently recruiting for participants in a research study on the impact of hoarding behaviours on those raised in hoarded spaces.
Currently, there has been little study and on this newly recognised disorder. As such, the research on its impact on those who have been raised in hoarded homes is even less.
About the study
This study aims to explore the experience of adults raised in hoarded homes, how they felt about their spaces and how they coped with living in limited spaces. The researcher hopes to understand the link between this experience and the development of resilience in the individual. The study will be conducted as a video interview and will last up to 30mins. This study is supervised by Dr Verity Di Mascio (Course Leader MSc Psychology of Mental Health & MSc Addiction and Mental Health, London Metropolitan University).
Requirements
Anyone aged above 18 years of age and has been raised for any portion of time in a hoarded home whilst under 18 years old. This study is open to anyone who can speak English and can be participated in from anywhere in the world via zoom. Participants may identify as any gender or non-binary gender. Exclusion criteria for participants will be for those who are currently receiving inpatient psychiatric support and or community crisis mental health support.
Keywords
Psychology, Hoarding, Resilience, Childhood, Home, Space, Stuff Ethics. This study had been granted ethical approval by the Ethics Committee at London Metropolitan University.
About the researcher
My name is Shamiso Mazaiwana, and I am currently a student on MSc Psychology of Mental Health at London Metropolitan University. I am a qualified Therapeutic Counsellor and have experience in supporting individuals with a range of challenges including Hoarding Disorder.
Contact
The Relationship between Hoarding related Psychological Inflexibility and Quality of Life
About the Study:
My name is Aimee Pick and I am currently looking for participants to take part in my research study as part of my MSc in Health Psychology at Ulster University. The study is looking at the relationship between hoarding related psychological inflexibility and quality of life. This consists of an online questionnaire which anyone over the age of 18 years old can complete. You do not have to feel you struggle with hoarding behaviours to participate.
If you are interested in taking part please click the below link for further information.
This survey is completely anonymous and will only be used for the purpose of my research study.
Contact
If you wish to contact me about the study.
Alternatively my research supervisor contact details are:
Dr John Mallett
Ulster University
School of Psychology.
Email: Dr John Mallett
Hoarding Behaviours Research
About the Study:
My name is Ilsang Moon. I am currently an MSc in Psychological Science at the University of Glasgow.
For my dissertation this year, I hope to study people who are struggling with hoarding problems. I hope to see what kind of psychological variables or experiences can predict hoarding behaviours to understand more about hoarding.
The questionnaire will take just under 10 minutes.
Contact:
Developing a Measure of Beliefs in Hoarding Disorder
About the Study:
The study is aiming to develop a tool that will help clinicians to identify different types of beliefs in people with hoarding disorder, so that treatments can better target the core beliefs held by patients who seek help from mental health professionals.
Participants can complete the study anonymously by clicking this link: Hoarding Beliefs Research
This will lead you to Qualtrics where you will be shown an information sheet and consent form. Demographic information will be collected and there is a screening measure to identify people whose hoarding behaviour reaches the threshold for the study. Those who qualify will be asked to rate how strongly they believe certain statements about their possessions. Finally, a debrief statement with further information and contact details will be shown.
This stage of the study just requires the completion of a single questionnaire with no follow-ups required. In total, the survey will take approximately 20 minutes. Those who complete the full questionnaire will be given the opportunity to win an Amazon voucher. For those who choose to provide their email address for the prize draw or other reasons can be assured that their email address will be kept separately from their responses to ensure anonymity is maintained.
This study is supervised by Dr Claire Lomax (DClinPsy Programme Director, Newcastle University) and Dr Rowan Tinlin (Clinical Psychologist, CNTW NHS Trust).
Requirements:
Anyone over the age of 18 can complete the study, as the questionnaire will screen people in or out at an early stage based on the severity of their hoarding and clutter. The study is open to anyone who can speak English, regardless of what country they live in. You do not need to have a diagnosis of hoarding disorder to take part.
Keywords: psychology, Newcastle University, Hoarding, hoarding disorder, beliefs
Ethics: This study has been granted ethical approval by the Ethics Committee at Newcastle University. Ref: 4326/2020
About the researcher: My name is Kathryn Ragan and I am a trainee clinical psychologist studying at Newcastle University and working for Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust. This study is for my doctoral thesis.
Contact details: Kathryn Ragan
Valuations in Hoarding Disorder: The Impact of Contextual Information on the Perceptions of Object Value
About the Study:
Our study is interested at understanding people with hoarding problems perceive the world. Research has shown that individuals with hoarding disorder view and value objects differently to others. These views also seem to differ from people with Obsessive Compulsive Disorder (OCD), which is often considered to have overlap with hoarding. Therefore, this study is seeking to further understand how those with Hoarding Disorder and OCD value different objects.
This study is supervised by Dr James Gregory, Clinical Psychologist, University of Bath.
Requirements:
- You must be over 18
- You must not have suffered any organic brain damage
- e.g. a stroke or traumatic incident like a car crash that has left you with some brain damage, confirmed by a doctor.
- Fall into one of three categories:
- Must be experiencing significant hoarding problems, with no current or past history of OCD – UNLESS hoarding is your main issue and you also have OCD.
- Must be experiencing significant problems due to OCD, with no current or past history of hoarding – UNLESS OCD is your main issue and you also have some hoarding problems.
- Must have no current or past history of OCD/Hoarding/ or other mental health problems.
Keywords: psychology, University of Bath, Hoarding, Obsessive Compulsive Disorder, perception, object value
Ethics: This study has been granted ethical approval by the Psychology Research Ethics Committee at University of Bath.
About the researcher: I am currently a postgraduate student at the University of Bath, studying for my MSc in Applied Clinical Psychology, and would greatly appreciate your participation in my final research project.
This study is addressing a gap in the literature concerning perceptions in hoarding disorder (HD) compared to obsessive compulsive disorder (OCD), regarding object value and how they may change dependent on contextual information. The outcome variable being measured will be total object value, which will consist of four subscales; instrumental, sentimental, aesthetic and monetary value.
If participants register their interest in the study a personal link to the questionnaire will be sent to them via email. This will lead them to Qualtrics where they will initially be shown an information sheet and consent form.
If they agree to proceed demographic info will be collected as well as information regarding their clinical status/major clinical problems. This will then be followed by the screening questionnaires, and the object rating task. Finally, a debrief statement with further contact details will be shown.
All responses are completely anonymised, however participants are able to provide their email address at the end of the study for a chance to be entered into an amazon voucher prize draw. This email will be stored completely separately to the data and so cannot be linked in any way, and will only be stored until the beginning of September, when the project ends.
The questionnaire will be a one-time event and no follow up tests or reassessments will be required of the participants.
In total the assessment will take 30-45 minutes.
I am completing this study as part of my postgraduate MSc in Applied Clinical Psychology at the University of Bath, under the supervision of Dr James Gregory.
It has received ethical approval from the University of Bath Psychology Research Ethics Committee
PREC reference number: 20-130.
Contact Isabel Evans
Research into the Experience of Taking Part in TV Programmes about Mental Health
My name is Hannah Selby and I am a PhD researcher from the Psychology, Psychotherapy & Counselling Division in the School of Applied Social Science at the University of Brighton. I would like to invite you to take part in my study.
What is the purpose of the study?
The focus of my research is factual TV series about mental health that involve people taking part in interventions. This could be therapy such as CBT, or it could be other activities like exercise, singing or decluttering. Examples include Mind Over Marathon (BBC1), The Hoarder Next Door (C4), Freaky Eaters (BBC3) and Obsessive Compulsive Cleaners (C4).
The study aims to find out how TV participants find the experience of being filmed and appearing on television and explore any positives or negatives of taking part. This research is an opportunity to talk about your ‘behind the scenes’ experiences of taking part in a television show. The aim is to give a voice to television participants with mental health issues and has the potential to inform how television series are made in future.
Who can take part?
I would like to speak to people who have been a main participant in a TV series involving taking part in therapy or activities related to issues such as anxiety, hoarding, OCD or phobias.
What is involved?
Taking part in the research involves being interviewed by myself. The interviews will take between 1-2 hours, but the length of time can be flexible depending on your needs. The interview will be arranged at a convenient location for yourself, or by Skype/telephone if more suitable. Your name or personal details will not be used in any documents based on the research findings without your permission. Each participant will be given a fictitious name to protect their anonymity and any details that might identify you will be altered.
How do I get involved?
Please contact me by email if you would like to ask any questions or discuss being involved in the research. My email is: h.selby@brighton.ac.uk
This study has been approved by the School of Applied Social Science Research Ethics and Governance Committee of the University of Brighton: Ref: 2019-039
