Much has been written and learned about eating disorders and associated mental experiences.

Participating in research gives you the opportunity to have your voice heard which might help influence how support is offered to others in the future.

Research requiring you to focus on personal experience can be emotionally provoking. If you have any concerns about participating in a research study make sure you read all the information provided and contact the researcher if you need to ask further questions or discuss what support you can access if you find the experience difficult.

You are invited to participate in a research study conducted by led by Dr Niamh McNamara, from Nottingham Trent University along with Dr Lucy Serpell, University College London and Dr Tegan Cruwys, Australian National University. We are interested in learning about how best to support families of adults who are living with and/or in recovery from an eating disorder. We hope to hear from a wide range of immediate family members including but not limited to parents, siblings, and partners. We are interested in learning about you as an individual and as a family member and your health and well-being (including questions relating to the impact of the eating disorder on you and your family and your experiences during the COVID-19 pandemic).

To take part, click here.

The purpose of the study is look at the experiences of eating disorder treatment, specifically outpatient treatment, in those with and without autism spectrum conditions. Several studies have reported the experience of those with co-existing anorexia and autism in relation to treatment, but no study had compared the experiences within one study. It is hoped that the findings will contribute the current body of knowledge and help inform how adaptations can be made in treatment to help make them more effective and acceptable to those with co-existing eating disorders and autism spectrum conditions.

Who can take part?

  • Aged 18+ who have received outpatient treatment for an eating disorder in the last 3 years
  • Aged 18+ who have received outpatient treatment for an eating disorder in the last 3 years and have a formal diagnosis of an autism spectrum condition

What does the study involve?

Taking part in the study would involve being interviewed by a researcher. The interview will involve talking about your experiences of outpatient treatment for your eating disorder. The main areas that will be asked about will be sent to you prior to the interview to give you some idea of the kind of questions you may expect. There are several ways in which the interview can be done. The options available are:

  • Meeting via a video call (for example, through Skype, or Zoom)
  • Having a conversation by instant messenger or via email
  • A telephone interview.

If you choose to complete an interview either via video or on the phone it is anticipated that the interview will last up to an hour. If your interview is done in writing (e.g. by email) then it may take longer to complete but can be conducted around time frames that suit you. Video and phone  interviews will be digitally audio-taped to allow the researcher to produce a written copy of what was said in the interview.

There is also a video available for you to watch where you can see and hear the researcher introduce herself and tell you a little about the study.

How can someone take part?

If you would like to find out more or take part, please contact the researcher (Nicola Brewin) by email: p17159071@my365.dmu.ac.uk

You are being invited to take part in some research. Before you decide whether or not to participate, it is important for you to understand why the research is being conducted and what it will involve.

Please read the following information carefully.

What is the purpose of the research?

We are conducting research on the impact of the stereotypical image of an individual with an eating disorder on those considered non-stereotypical. The purpose of the study is to is to examine the themes participants discuss regarding their experiences in areas such as their own perception of their illness, barriers in receiving help and media attention. In order to take part, participants must be aged 18 or over and have a history with the following eating disorders: anorexia nervosa, bulimia nervosa and/or OSFED (Other Specified Feeding and Eating Disorders). Your participation in this study will involve taking part in one interview which will take between 30 and 60 minutes, but there is no time limit.

Who is carrying out the research?

The data are being collected by principle researcher Hannah Champion, in the Department of Psychology, Human and Health Sciences at Swansea University – under the supervision of Dr Rachael Hunter in the Department of Psychology, Human and Health Sciences at Swansea University. The research has been approved by the College of Human and Health Sciences Research Ethics Committee.

What happens if I agree to take part?

You will take part in an interview about your experiences of having an eating disorder, such as your own perceptions of the illness, seeking help, representation, and the barriers you may have encountered.

You will be asked specific questions, although you may choose not to answer any questions you do not wish to. With your permission, your interview will be recorded, which will only be accessed by the principle researcher and deleted once it was been transcribed.

All information you provide will remain anonymous. During the transcription process direct identifiers such as your name, will be replaced with a pseudonym and any other information which may identify you as an individual will also be removed. Your data will be analysed using thematic analyses, but only your pseudonym will be used in the write up of the research. The information you provide will be used anonymously in academic papers and other formal research outputs.

Are there any risks associated with taking part?

The research has been approved by the College of Human and Health Sciences Research Ethics Committee. You may find that participating in eating disorders research to be a triggering experience. Please feel free speak with the principle researcher about any questions or concerns you have at any point before, during or after the research (contact details are below). You may also wish to discuss any concerns with someone close to you, a support service and/or perhaps a healthcare professional. Also please remember that you are free to withdraw from the research at any time before or during the interview. Your health and well being should be the top priority.

Data Protection and Confidentiality

Your data will be processed in accordance with the Data Protection Act 2018 and the General Data Protection Regulation 2016 (GDPR). All information collected about you will be kept strictly confidential. Your data will only be viewed by the researcher/research team.

All electronic data will be stored on a password-protected computer file on the principle researcher’s personal laptop and deleted after completion of the project.  All paper records (consent forms) will be stored in a locked filing cabinet in a university office. Your consent information will be kept separately from your responses to minimise risk in the event of a data breach.

Please note that the data we will collect for our study will be made anonymous soon after the interview takes place (i.e. once it has been transcribed anonymously the recording of our interview will be destroyed). Thus, it will not be possible to identify and remove your data at a later date, should you decide to withdraw from the study. Therefore, if at the end of this research you decide to have your data withdrawn, please let us know before you leave.

What will happen to the information I provide?

An analysis of the information will form part of our report at the end of the study and may be presented to interested parties and published in scientific journals and related media.  Note that all information presented in any reports or publications will be anonymous and unidentifiable.

Is participation voluntary and what if I wish to later withdraw?

Your participation is entirely voluntary – you do not have to participate if you do not want to.  If you decide to participate, but later wish to withdraw from the study, then you are free to withdraw without giving a reason and without penalty. However, please note that should you wish to withdraw, it is advisable you do so before you leave the interview if you do not wish your information to be included in the study findings.

If you would like to participate in this research study please apply directly to Hannah Champion via email h.m.champion.940110@swansea.ac.uk

If you are interested in participating or if you have any further questions and would like to know more about this research, please email Sing at S00906680@regents.ac.uk

The interview will take roughly 60 minutes and will be conducted remotely online via video conferencing platforms such as Zoom or Skype due to current Covid-19 restrictions.

A new experiment being conducted at the University of Oxford is designed to help us learn more about the roles reading can play in eating disorders and recovery. It involves reading a book about anorexia recovery prior to its publication (or a book about an unrelated topic, depending on which group you’re randomly allocated to) over a 2-week period. Participants’ responses will guide publication decisions for the anorexia book, called The Hungry Anorexic, including potential edits and whether it gets published at all.

If you’re interested in taking part, you can find out more by clicking here.

An interesting opportunity for anyone affected by eating disorders.

Florence is looking to write a verbatim play (documentary theatre) looking at the consequences of an eating disorder, with the hope to include stories from not only the sufferer but also their carers, professionals, siblings, friends and family.

The aim of the project would be to anonymously present the words of those who have been directly or indirectly affected by an eating disorder, with a diverse mix of people to help develop a rounded narrative and content for the play. If you’re interested in speaking with Florence or would like to learn more, please contact the researcher directly at florencetingley@gmail.com

Take part in a 3rd year Undergraduate Psychology Study exploring the potential cognitive impairments of eating disorders. This study will implement Traditional and Modern cognitive measures to test executive functioning in individuals with eating disorders.

A diagnosis is NOT required to take part, you only need to be 18+. Ethical Approval from Goldsmiths University of London (and any information will be kept completely confidential)

If you are interested in taking part, or have any questions, please email oiggs001@gold.ac.uk

This study has received ethical approval from the Psychology Ethics Committee of Durham University.

The aim of this study is to investigate the role of different factors in eating attitudes and behaviour. The study consists of 4 short questionnaires and an experimental paradigm, and should not take more than 30 minutes to complete. The study contains no mention of numbers, weight, BMI or calories.

Participants must be over the age of 18 and have access to a laptop/computer. Your participation is completely voluntary, and you do not have to agree to take part. If you do agree to take part, you can withdraw at any time, without giving a reason

To learn more about this study, please read the Participant Information Sheet or contact Nieve (nieve.gauvain@durham.ac.uk) with any questions.

As a part of an undergraduate dissertation (which may be used in publication), this is a qualitative exploration of clients with Eating Disorders to understand the experience of empathy with their therapist. There will be a 1-hour interview where questions will be asked about length of treatment, and aspects of the relationship individuals with eating disorders find adaptive to recovery.

[Ethics sign off: University of East London]

You are free to withdraw from the research study at any time without explanation, disadvantage or consequence, provided the request is made within three weeks of the data being collected (e.g., from the date when your interview took place), after which point the data analysis will begin, and withdrawal will not be possible.

For more details, click here.

Completed Research and Outcomes

We are partnering with University of Nottingham, Health Humanities on a study workshop to capture opinion, feedback and existing patient experience to inform new service developments specifically form“Eating Disorders in Boys and Men”.

We invited 50 people and professionals with specific exert experience of current services from across a range of sector and settings for a full day working group event on 11th December 2019 (9:00-16:00) hosted by Health Humanities at The University of Nottingham (Lead: Dr Heike Bartel) and First Steps ED (Lead: Kevin Parkinson, CEO).

This event involved presentations by academics, practitioners and males with experience of eating disorders and compulsive exercise where participants had the opportunity to take part in a number of case study workshops, discussion panels and get involved in the development of a new UoN HELM online learning and teacher resource which First Steps ED is investing in to make available to professionals working in support services for males.

This event will help to inform new care models and future service redesign, informed by research at The University of Nottingham and intended to be adopted by First Steps ED as the East Midlands Eating Disorder charity to help reduce the stigma males experience when seeking support.

Workshop Partners:

Health E-Learning and Media (HELM) Team at University of Nottingham is based in the School of Health Sciences and aims to provide expertise and support in the development, design, evaluation and research of technical and media-based educational materials and interventions in health.

University of Nottingham School of Health Sciences provide a range of undergraduate and postgraduate courses and degrees in the fields of nursing, midwifery, physiotherapy, sport rehabilitation, and applied health professions and have an outstanding reputation for teaching and research excellence.

Health Humanities (Improving Health and Wellbeing in Contemporary Society) is a new Research Priority Area (RPA) at the University of Nottingham bringing together established and enthusiastic eminent scholars from the United Kingdom and International academics and practitioners investigating how the arts and humanities can provide new opportunities for transforming healthcare and enhance physical and mental health and well-being.

Hungry for Words was an event that took place at The University of Nottingham, and it was targeted at Year 11 and 12 pupils, and their teachers.

As part of the programme, pupils were encouraged to share their experiences about their stresses, how they cope and how this impacts on their mental health and well-being. This event was part of a wider research project, which is investigating well-being, mental health and eating disorders.

First Steps’ workshop focused on some of the stigmas associated with body image in males. It aimed to get the cohort of boys talking about their bodies and looking at them in more of a positive way, rather than focusing on their flaws.

Social media was a theme throughout one of which was seen in both a positive and negative light.

Overall, the session was successful, with the boys highlighting how much it helped them to open up and have a discussion about their own body image experiences and difficulties.

Future plans:

First Steps are to be involved in ‘Hungry for Words: An interdisciplinary approach to articulating, communicating and understanding male anorexia nervosa’ as part of the Academic Health Science Networks.

Experience of parents of people with an eating disorder

Relationship between compassion and predictors of depression in parents of people with an eating disorder.

Name of researcher: Pamela Fox, Trainee Clinical Psychologist

Email: Pamela Fox at p.p.fox406@canterbury.ac.uk

What is the purpose of this research?

The purpose of this research is to explore the wellbeing of parents of a loved one with an eating disorder and see if there are certain experiences you might have as a carer that may contribute to depressed mood. This will help develop a greater understanding of the needs of carers and help develop interventions focussed on supporting carer wellbeing.

Who can take part?

You can take part in this study if you are a parent of someone with an eating disorder.
You also must be over 18 years of age and have a good understanding of written English.

What does the study involve?

The study will involve completing six questionnaires on an online platform. This will take approximately 30-35 minutes. The questionnaires will ask you about different aspects of your mood and thoughts about yourself. You will also be asked to provide some general information about yourself.
As a thank you, you will be given the opportunity to enter into a prize draw to win one of two £50 amazon vouchers.

How can you take part?

To read further information about the study please follow the link
(https://cccusocialsciences.az1.qualtrics.com/jfe/form/SV_6sPalN4b2uJOZtX)
This link will also guide you to the study page if you wish to take part.
If you have any questions about the study, please contact Pamela Fox at p.p.fox406@canterbury.ac.uk

Further Detailed Information about the research

Relationship between compassion and predictors of depression in parents of people with an eating disorder

Hello. My name is Pam and I am a trainee clinical psychologist at Canterbury Christ Church University. I would like to invite you to take part in a research study. Before you decide whether to take part, it is important that you understand why the research is being done and
what it would involve for you.

Talk to others about the study if you wish.

(Part 1 tells you the purpose of this study and what will happen to you if you take part. Part 2 gives you more detailed information about the conduct of the study).

What is the purpose of the study?

This research will be exploring your (a parent and carer of a loved one with an eating disorder) wellbeing and seeing if there are certain experiences you might have as a carer that may contribute to depressed mood. This will help develop a greater understanding of the needs of carers and help develop interventions focussed on supporting your wellbeing.

Why have I been invited?

You have been approached for this study because I am interested in understanding your experience and needs as a parent and carer of someone with an eating disorder.

Do I have to take part?

It is up to you to decide whether to join the study. If you agree to take part, I will then ask you to sign or provide electronic consent depending on how you would prefer to complete the study, on paper or online. You are free to withdraw at any time, without giving a reason.

What will happen to me if I take part?

If you agree to take part you will be asked to sign the consent form attached to this information sheet or follow the link below to be forwarded to this information online followed by a consent form.
This is to acknowledge that you have read these guidelines and understood the purpose of the study. https://cccusocialsciences.az1.qualtrics.com/jfe/form/SV_6sPalN4b2uJOZtX
There will be six questionnaires that will take you about 30-35 minutes in total to complete. You will also be asked to provide some general information about yourself. I am interested in your views so therefore it is important that you complete the research pack on your own.
At no point on any questionnaire will you be asked to provide your name or any identifiable information. The written and online consent forms will be separated from the completed questionnaires. Your responses will therefore remain anonymous.
Once you have completed all the questionnaires please place them in the envelope provided and seal it. If you are completing this at the carers support group please return them to me. If you are completing them at home, please return the completed research pack in the stamped addressed envelope provided. Alternatively please use the online
questionnaires as advised.

What are the possible disadvantages and risks of taking part?
It is not anticipated that any physical or psychological harm will occur from participation in this study. However, providing care can be a stressful activity and some of the questions may make you more aware of these difficulties.

What are the possible benefits of taking part?

Your views will help develop the understanding of carers’ experiences and needs. The information you provide will contribute to my research thesis. The findings will hopefully be published in an academic journal. You will be asked at the end of the study to provide your email address if you would like to receive a summary of the findings.

As a thank you, you will also have the option to enter into a prize draw to win one of two £50 Amazon vouchers for completing the research pack.
What if there is a problem?

Any complaint about the way you have been dealt with during the study or any possible harm you might suffer will be addressed. The detailed information on this is given in Part 2.

Will information from or about me from taking part in the study be kept confidential?

Yes.

Answers you provide to the questions will be kept separate from your consent and contact information if you have provided this (i.e. to receive a summary of results and/or prize draw).

Therefore, your answers will remain anonymous.

We will follow ethical and legal practice and all information about you will be handled in confidence.

This completes part 1.
If the information in Part 1 has interested you and you are considering participation, please read the additional information in Part 2 before making any decision.

Part 2 of the information sheet What will happen if I don’t want to carry on with the study?

If you withdraw from the study, we would like to use the data collected up to your withdrawal.

Complaints

If you have a concern about any aspect of this study, you should ask to speak to me and I will do my best to address your concerns. You can contact me by leaving a message on the 24-hour voicemail phone number 01227 927070. Please leave a contact number and say that the message is for me [Pam Fox] and I will get back to you as soon as possible. If you remain unhappy and wish to complain formally, you can do this by contacting The Research Director, Professor Paul Camic on 01227 927114.

Will information from or about me from taking part in the study be kept confidential?

  • All information which is collected from or about you during the course of the research will be kept strictly confidential.
  • All data will be stored at the University for 10 years (in locked storage if completed offline and on a password protected computer if completed online).

What will happen to the results of the research study?
It is my intention to prepare these findings to be published within an academic journal.
However, prior to this, if you have provided your email address with the intention of receiving a summary of results then these will be sent to you. If you have taken part in this study at your local support group I will send a summary results there. The results of the study will also be made available on the study website: https://cccusocialsciences.az1.qualtrics.com/jfe/form/SV_6sPalN4b2uJOZtX

Who is organising and funding the research?

This study is being funded by Canterbury Christ Church University as part of my training towards becoming a clinical psychologist.

Who has reviewed the study?

All research in the NHS is looked at by an independent group of people, called a Research Ethics Committee, to protect your interests. This study has been reviewed and given favourable opinion by The Salomons Ethics Panel, Salomons Centre for Applied Psychology, Canterbury Christ Church University.

Further information and contact details:

If you would like to speak to me and find out more about the study or have questions about it answered, you can leave a message for me on a 24-hour voicemail phone line at 01227 927070. Please say that the message is for me [Pam] and leave a contact number so that I can get back to you. Alternatively, you can email me; my email address is
p.p.fox406@canterbury.ac.uk

We’re proud to have supported Student Minds on a groundbreaking research project to understand the provision of support for students with eating disorders across the UK, with the aim to make national recommendations on what we can be doing better to support student wellbeing.

Eating disorders huge impact on a young person’s life, and for those who are impacted, it can involve a range of emotional and psychological challenges. While an eating disorder can have a severe impact on a student’s quality of life, with the right help students can and do recover from eating disorders. We’ve met hundreds of incredible students that have done just that.

Nationally, it is thought there may be gaps in specialist support for students experiencing eating disorders and reports of students being turned away from help due to increasingly limiting ‘thresholds’ for statutory NHS services. However there was not a comprehensive national view of what this looks like and we needed to undertake research and speak with students and professionals to truly understand the picture.

Which is why Student Minds, in partnership with King’s College London (KCL) and a wider coalition of additional academic and charity partners, decided to work together on new research which explores the experiences of students with eating disorders with recommendations as to what we can do together to improve their wellbeing.


Student Minds, the UK’s student mental health charity, have shared the findings in a new informative report: ‘Supporting Students with Eating Disorders‘.

The report interweaves findings from an audit into the lived experiences of students accessing eating disorders support, with testimony from a panel of subject experts and the existing evidence base. It is now available to read on their website, where you can find out more about the challenges facing students with eating disorders at university, and importantly what we can do to help them. The report also discusses the role of health inequalities in this context and how the Covid-19 pandemic may impact these students.

The First Steps ED’s Skills for Carers team and parents supported this research and report published by Cambridge University Press on behalf of the Royal College of Psychiatrists. The paper captures their reflections and experiences, with the hope that it may contribute to future changes and improved care for families in a similar position to themselves in future.

To read the full report, click here.

Background

Parents of a loved one with an eating disorder report high levels of unmet needs. Research is needed to understand whether clinical guidance designed to improve the experience of parents has been effective.

Aims

To establish parents’ experiential perspectives of eating disorder care in the UK, compared with guidance published by Beat, a UK eating disorders charity, and Academy for Eating Disorders, the leading international eating disorders professional association.

Method

A total of six focus groups (one online and five face-to-face) were held throughout the UK. A total of 32 parents attended. All par- ticipants were parents of a loved one with a diagnosis of anorexia nervosa or atypical anorexia nervosa (mean age 22 years; mean duration of illness 4.4 years). Focus groups were transcribed, and the text was analysed with an inductive approach, to identify emerging themes.

Results

Four key themes were identified: (a) impact of eating disorder on one’s life, (b) current service provisions, (c) navigating the tran- sition process and (d) suggestions for improvement.

Conclusions

Current experiences of parents in the UK do not align with the guidelines published by Beat and Academy of Eating Disorders. Parents identified a number of changes that healthcare providers could make, including improved information and support for parents, enhanced training of professionals, consistent care across all UK service providers, policy changes and greater involvement of families in their loved one’s care. Findings from this project informed the design of a national web-survey on loved ones’ experience of care in eating disorders.

Exploring the perceptions of social media through the eyes of those with and without eating disorders (2017)

Description: Selina Hussain recently involved First Steps in her research project. Selina’s work highlighted the following:

  1. Extensive amount of research has found social media to have a negative influence on an individual’s mental wellbeing through negative self-evaluation.
  2. Results found that there were 7 fundamental factors influencing one’s self-perception and mental wellbeing: Social Media Interactions, Emotional Responses Associated with Social Media, Media Portrayal, Life Experiences, Understanding Eating Disorder Symptomology, Personal Experiences of Eating Disorders and Identified Personality Attributes.
  3. The study supported that of previous studies which demonstrated that social media has a negative impact on one’s self-perception and mental-wellbeing, contributing to the development and maintenance of eating disordered behaviour.

Patient and Public Involvement work to develop research questions relevant to individuals with mild to moderate eating disorders (2017)

Description: Recently, we had the privilege of supporting student Justin Tetlow with his research project.  Some of our service users and workers were involved in the work. Justin is able to now report his key findings, which are:

  1. There is a perception that there is a lack of GP knowledge of Eating Disorders. Therefore an education package may need to be developed for either medical students or GP Trainees.
  2. For mild to moderate EDs, BMI is often not relevant. An alternative diagnostic criterion may be useful perhaps based on ED behaviours.
  3. Continuity of Care was a priority for many EDI’s and carers. This may be crucial in the management of mild to moderate ED in primary care.
  4. Questions for GPs to screen patients for EDs were summarised during the PPI events and future research could validate these.

The most practically useful thing to come out of the project is the potential to replace SCOFF.

Would you like us to share or promote any upcoming research or support a dissertation?

We are happy to support relevant research opportunities and dissertations here at First Steps ED. If you would like to feature here, please send in your information via our ‘Research Request Form’ below!

Research Request Form

If you would like to feature on the First Steps ED website, please send us your information making sure to attach your Ethics Sign Off and any other flyer or leaflet you’d like to share.

    We process your data in accordance with the General Data Protection Regulations (2018). You can use this form or telephone us at any time to amend, change or remove your data from First Steps ED.

    Add info@firststepsed.co.uk to your whitelist/safe senders list and check your junk/spam folder if you haven’t seen an email from us that you’re expecting.