Research call for clinicians, clients and carers with experience of inpatient care eating disorder services

Do you work in an Inpatient Paediatric Eating Disorder Program?

or

Have you previously spent time as an inpatient in a Paediatric Eating Disorder unit?

or

Are you the carer of a young person who has been admitted into an inpatient program for Paediatric Eating Disorders?

If your answer is ‘yes’ to any of these three questions you are invited to participate in a study that aims to look at what Clinicians, Clients, and Carers view as being important when it comes to the services provided in Paediatric Inpatient Eating Disorder Settings.

Participation involves rating a series of statements regarding inpatient care at three separate points in time. Each ‘round’ is estimated to take about 20 minutes, and will commence early 2016.

The study is organized through Curtin University, Western Australia.

For more information or to register your interest in participating, contact:

amy.obrien@curtin.edu.au

Participant information

Project title: Consensus-Based Perspectives of Paediatric In-Patient Eating Disorder Services

Principal investigator: Dr Sarah Egan

Student researcher: Amy O’Brien

Dr Egan and Amy provide the following explanation for you:

What is the project about?

In-patient treatment for children and adolescents who have eating disorders is a complex topic, and there are many different opinions on the best approaches. Often there are different perspectives on the best course of treatment, and parents, clinicians, and patients may disagree on what is most helpful. There is limited research that takes into account all three perspectives when considering treatment options. We are interested in identifying aspects of care that clinicians, carers, and clients view as being important in treatment. Our aim is to provide evidence to inform future guidelines on best-practice management for children and adolescents in the inpatient treatment of eating disorders.

We are seeking the input from clinicians, carers, and past-clients of specialized child and adolescent inpatient eating disorder services. We aim to have even numbers of participants from within each group, totalling around 100 participants.

Why am I being asked to take part and what will I have to do?

Participation in this study will involve three rounds of data collection that will be conducted online. Participants will be asked to rate a series of statements in terms of their importance regarding inpatient eating disorder care. Rounds will take approximately 20 minutes to complete, and the first round will begin early 2016. We are inviting anyone who fulfils the following inclusion criteria and has Internet access to participate. It is important to note that data will be re-identifiable until the completion of the study, as feedback about the round will be provided to each participant, however data will be kept securely on Curtin’s Research Drive and only available to the primary researchers.

The following inclusion criteria for each group of participants is as follows:

Clinicians

– Completed a tertiary education in a related health science field.
– Have a minimum of 3 years experience working in a paediatric inpatient Eating Disorder setting.

Carers

– Have been the parent or guardian of a young person who has spent time in a child/adolescent inpatient eating disorder setting.

Clients

– 18 years and older.
– Have spent time in a child/adolescent inpatient eating disorder setting.

Exclusion criteria for this study are a current self-reported eating disorder diagnosis, if you are still receiving treatment for an eating disorder, or are under the age of 18 years.

Are there any benefits’ to being in the research project?

This project will enable participants the opportunity to express their views on their experience of inpatient child and adolescent eating disorder care in the hopes of generating change to future guidelines. After the final data collection point a small cash value totalling $5 will be given to participants via online transfer as compensation for their time.

Are there any risks from being in the research project?

There is the potential for participants to experience emotional side-effects related to revisiting their experiences of having or knowing someone who was treated for an eating disorder. We aim to develop the items in a way to minimise these effects, however you are free to discontinue the study at any point if you feel concerned, please contact the researchers and a list of support option will be provided upon request. You are free to withdraw from the research at any time without any negative consequences to you and we will provide you with referral options if required.

Who will have access to my information?

The only people who will have access to your data are the research team. It is important to note that the data will be re-identifiable (coded), meaning that we are able to reconnect response back to the participant via matching the code. This is necessary so that the researcher can email a reminder to participants if they have yet to complete a round, but more importantly because after each round feedback is given to each participant regarding their answers in comparison to the group. Only the research team have access to the code to match your name when it is necessary to do so. Any information we collect will be treated as confidential. The following people will have access to the information we collect in this research: the research team and the Curtin University Ethics Committee for auditing purposes.

Data will be stored electronically and will be password-protected. Data will be retained for up to 7 years after the completion of the study and then it will be destroyed in accordance with the relevant laws. As a participant, you have the right to withdraw from the study and request the removal of your data from the research at any point up until the final round of data collection whereupon the data will be de-identified, and we will not be able to connect response with individuals anymore.

Will you tell me the results of the research?

After each round of data collection a brief summary of results will be emailed to participants. At the conclusion of the study a summary of the overall findings will be provided to participants. The results of this study will be published in a scientific journal, however no identifying information will be included.

Do I have to take part in the research project?

Taking part in a research project is voluntary. It is your choice to take part. You do not have toagree if you do not want to. If you decide to take part and then change your mind, that is okay, you can withdraw from the project. You do not have to give us a reason; just tell us that you want to stop. If you chose not to take part or start and then stop the study, it will not affect your relationship with the University, staff or colleagues. If you chose to leave the study we will use any information collected unless you tell us not to.

What happens next and who can I contact about the research?

This research is being conducted by Amy O’Brien as part of the requirements for completing a Clinical Psychology Masters degree. If you wish to express an interest in participating in this study contact Amy O’Brien at amy.obrien@curtin.edu.au and more information will be provided.

At the start of Round 1 there will be checkbox to indicate you have understood the information provided here in the information sheet, and consent for your data to be used.

Questions or concerns?

Cntact Amy O’Brien at the above email, or Dr Sarah Egan at S.Egan@curtin.edu.au or  on +61 (08) 9266 2367.

Curtin University Human Research Ethics Committee (HREC) has approved this study (HREC number RDHS-06-16). To discuss the study with someone not directly involved, in particular, any matters concerning the conduct of the study or your rights as a participant, or you wish to make a confidential complaint, you may contact the Ethics Officer on + 61 (08) 9266 9223 or the Manager, Research Integrity on + 61 (08) 9266 7093 or email hrec@curtin.edu.au

June Alexander

About June Alexander

I have written nine books about eating disorders since my recovery (my “reconnection with true self”) from anorexia nervosa and other long term mental health challenges in 2006. In 2017, I graduated as a Doctor of Philosophy (Creative Writing). My contribution to the eating disorder field was recognised at the 2016 Academy for Eating Disorders International Conference in San Francisco where I was awarded the Meehan/Hartley Award for Public Service and Advocacy. I am currently a co-chair of the NEDC Steering Committee Evidence of Experience Group, a foundation steering committee member of the annual World Eating Disorders Action Day, and an Advisory Panel member for F.E.A.S.T.

All articles by June Alexander

Leave a Reply