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

Participating in research is a chance 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. It may be important to discuss what support you can access if you find any of the experience triggering.

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 undertaking a groundbreaking research project with Student Minds the University and College Mental Health Charity to understand the provision of support for students with eating disorders across the UK and to make national recommendations and identify possible new solutions.

Approximately 1 in 10 students may experience an eating disorder(1).

Eating disorders are often misunderstood but can impact anyone – regardless of age or gender – and can have a huge impact on a young person’s life. Eating disorders involve a range of emotional and psychological challenges and commonly occur alongside psychological problems, such as those related to anxiety or depression. 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.

In recent years we have heard of substantial challenges experienced by students in ensuring quick access to specialist eating disorders care.

Nationally, it is thought there may be gaps in specialist support for students experiencing eating disorders and there are reports of students being turned away from help due to increasingly limiting ‘thresholds’ for statutory NHS services. However, we don’t currently have a comprehensive national view of what this looks like.

We need to undertake research and speak with students and professionals to truly understand the picture.

That’s why the two Charities are working in partnership with academic partner King’s College London (KCL), and a wider coalition of additional academic and charity partners to understand how to best support students experiencing eating difficulties in the academic environment.

We will map national provision with our expert Eating Disorders advisory group and the help of university partners, conduct interviews with students, and undertake data analysis from the First Steps ED, Eating Disorders In Student Services (EDISS) Universities currently receiving this specialist eating disorder mental health service.

The key output of this project will be an easy to use report for the Higher Education and NHS Health sectors summarising all of our findings and making clear recommendations to help improve the support available for students with eating disorders whilst at University.

The success of this project, however, will be completely dependent on identifying the student services staff, professionals and students to participate.

​We hope you’ll join us on this important project to change thousands of people’s lives and prevent so many students from falling through the gaps and the grip of eating difficulties.

Please go to our partners Research website pages:

STUDENT MINDS – website to find out how to get involved

Change how Students with Eating Disorders receive the support they need to thrive during their University journey.

(1) More than 1 in 10 young people may experience an eating disorder. References: Stice, Marti & Rohde, 2013, Journal of Abnormal Psychology, 122, 445-457; Eisenberg et al. (2011), J American College Health, 59, 700-707.

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 have 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 will involve presentations by academics, practitioners and males with experience of eating disorders and compulsive exercise.

Participants will have the opportunity to take part in a number of case study workshops, discussion panels and 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.

The event will be an excellent opportunity to network with up to 50 like-minded professionals and researchers with an academic interest in supporting individuals struggling with eating disorders.

Taking place at the Amenities Building on Jubilee Campus at University of Nottingham between 9:00 and 16:00, lunch will be provided.

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.

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.

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.

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.

Want to book, discuss costings or have questions?

You can contact us today for all your training enquiries and we’ll be happy to help.

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