Researchers call on people with eating disorder experience for answers

Researchers call on people with eating disorder experience for answers

A team of Australian researchers believe that listening to stories from people who have eating disorder experience is the best way forward in finding new ways to treat the illness.

The Western Sydney University research team, led by Dr Janet Conti and Professor Phillipa Hay in collaboration with Laura Kiely and Yive Yang, wants to hear from people who have lived at any stage with an eating disorder (ED).

Often, people with eating disorders express despair that they feel misunderstood by their treatment teams. They experience feelings of powerlessness and hopelessness because they do not feel ‘heard’. This new research opportunity provides an avenue for people with ED experience to tell their stories, and for their stories to count in helping themselves, and helping others.

The researchers involved in this project have been personally impacted by an eating disorder (ED) either through their own lived experience or encounters with ‘patients’ or loved ones. This has led to a commitment to create opportunities in research, as a portal for people with a current or past ED to share their stories.

The researchers are ready to listen. They want to understand what an eating disorder is like from the perspective of people with experience. They want to empower people to use their experience in a healing way, and to shape change by positively influencing how eating disorders are seen and treated.

Laura and Yive explain their involvement in this innovative and very welcome research project:

Who are we?

Laura Kiely

I am a former eating disorder clinician who has witnessed first-hand the devastating impact of eating disorders in our communities – especially those with a long-standing experience.  In 2021, I committed to publishing the artistic legacy of the late artist Chloe Tupper, who generously shared her insights about life with Severe and Enduring Anorexia Nervosa through her unique language of painting (www.seeinganorexia.com). Chloe’s story, together with others, has inspired me to a research pathway. To talk to people about their own unique experiences, and elevate this wisdom, in the hope of deepening understanding of eating disorders and influencing treatments, so they can be most helpful for people. I am seeking to hear from people who have lived with anorexia nervosa, to understand their unique lived experience.

Yive Yang

I am an eating disorder dietitian and my passion and resolve to help others stems from my own experience of an eating disorder and treatment. I am continually inspired by clients in my clinical practice (https://connected.anzaed.org.au/member/yive.yang/) who arrive time-and time again to pursue freedom from an ED. It is the voices of these people who I want to uplift in my research. Through my research, I am interested to understand how dietitians can better help their clients. For instance, I want to understand how people can benefit most from having a dietitian on their care team, and how people with lived experience perceive a dietitian’s role. I want to find out if dietitians may have ‘missed the mark’ for people and how we can prevent this from happening in the future. If you have seen a dietitian for eating disorder treatment, please consider sharing your story with me by completing our survey.

The research

We are interested to find out more about people’s lived experiences of eating disorders as well as their experiences with treatment. This includes a greater understanding of what works for people and why, including why people may cease treatment or decide that a particular treatment is not for them.

We know that an experience of an ED is unique to each person and each story adds to understanding and enhances how EDs are seen and understood. We believe that understanding experiences of eating disorders from the perspective of those who have experienced them is the best way forward in offering new ways of seeing and treating EDs.

What will I be asked to do?

You will need to have experienced an eating disorder (or symptoms) and be over the age of 16, to participate in this study. Participation is via an online 30-minute survey:

Online survey link: https://tinyurl.com/2ezpa4x6

The survey questions ask you about life with an eating disorder and what eating disorder treatments you have received. You are asked about what you found helpful and unhelpful about this type of treatment, and how eating disorder treatments may be improved. You will also be asked questions about yourself, including your current mood, levels of anxiety, your quality of life and any symptoms of an eating disorder. We will also ask if you are interested in being contacted for an online interview to further explore your treatment experiences.

How can I participate?

We are hoping to collect and amplify the voices of people from around the world over the next few months – hopefully hundreds will participate – via an online survey. If you are over 16 years old and would like to contribute, please visit the link:

Online survey link: https://tinyurl.com/2ezpa4x6

We are also conducting interviews on the same subject. If you would like to participate in an interview, please reach out to: L.Kiely@westernsydney.edu.au or Yive.Yang@westernsydney.edu.au