Participation is Advocacy

This page will offer various opportunities, both local and internationally, that will allow you (the caregiver) to share some parts of your experience or knowledge about eating disorders.  Studies, polls and opportunities to contribute to various blogs.  It will also share opportunities for those with various Eating Disorders to participate in various studies, polls, etc…

Read what’s on offer and decide if this is for you.  Through our own hard won knowledge and experiences we can help others.  We can also offer valuable information and perspective to clinicians.   Parents and caregivers are often left out of important treatment decisions and conversations, particularly when their child is an older teen.  That does not mean that you can’t contribute.  Let your voice be heard!

 

 

 

Why Parent Advocacy is So Important in the Fight Against Eating Disorders

4 February, 2021

As Brigitte has written: ”

Couldn’t have said it better myself!
Taken from this article:
“… advocacy can be a life raft when you are in the depths of despair. I found that during the refeeding of my daughter, my life was consumed with shopping, cooking, cleaning, feeding and therapy – all while trying to work and keep sane. Advocacy allowed me to channel my fear, anger and frustration to something that actually can make a big difference in changing the way eating disorders are addressed globally. It also brought me closer to many, many people who have dealt with the same issues that I have. While I’ve not met many of them in person, I consider them close and dear friends. The other side effect of public advocacy is that others will seek you out for counsel, or to share this secret they have been harboring for years, to invite you to join their advocacy efforts or to join yours.”

New Research Opportunity- NSHA Binge Eating Study

5 January, 2021

STUDY TITLE: A randomized controlled trial comparing a group-based guided self-help approach to pure self-help for the treatment of binge eating disorder.

You may be eligible to participate if you:

• Are 18 years of age or older
• Have access to a computer with an internet connection and webcam that can be used in a private area
• Are not currently receiving therapy/treatment specifically for binge eating

What is required?

• An online video meeting with a member of our research team that will help us determine your eligibility
• Three online group sessions designed to help with binge eating OR the use of a self-help book for 10 weeks

CHEO Research Institute – Caregiver Input

20 April, 2024

This is a Canadian initiative and may be of interest to some.
The information gathered is to help an Ontario based prevention initiative by the Ontario government.

Exploring Best Practices in the Treatment of Severe and Enduring Anorexia Nervosa: A Pilot Study

28 February, 2021

Taken from this article:
“Patients with Severe & Enduring Anorexia [SE-AN] present with complex clinical challenges that are distressing not only to them, but often to the providers who treat them. As patients have frequently experienced multiple courses of treatment with limited sustained benefit, treatment rejection is a common theme. Clinicians who work with this population may experience anxiety, frustration, and even hopelessness when confronted with these realities (Parisi-Cummings & Erckert, 2020), complicating the relationship between patients and treatment providers. There is an urgent need to explore new models of care for this population.”

Your Experience with Eating Disorders Treatment in Nova Scotia

20 April, 2024

Accessing treatment for an eating disorder isn’t always straightforward. We want to learn more about your experience.
Did you support a young person? We want to hear about that too.
Eating Disorders Nova Scotia will be sharing the journey of Nova Scotians who have tried to access and/or received treatment with the NS Health Authority and IWK at the end of April. Your experience can help improve that process for others.

The Family Perspective: Accessing Eating Disorder Treatment in Nova Scotia

20 April, 2024

The Nova Scotia Health Authority and the IWK have created the NS Eating Disorders Working Group to standardize and improve Eating Disorders services across Nova Scotia.
As part of our work as a member of the Nova Scotia Health Authority/IWK’s Eating Disorders Working Group, Eating Disorders Nova Scotia is conducting a survey to learn more about the experiences of those who have sought and/or received treatment for an eating disorder in NS.
What was your experience accessing treatment for your child?  If they received care in more than one place/from one clinician, what was that process like? What worked well? What were the challenges?
The results of this survey will be presented to the Eating Disorders Working Group mid April 2021.

Participate in a panel of young adults or parents/caregivers affected by Eating Disorders to generate recommendations for future Eating Disorder research and care delivery

25 February, 2023

The dates we are currently offering to host the young adult and parent/caregiver panels are:
February 25 and 26, and March 5 from 10am-1pm MST (12-3pm EST)

The goal of this study is to identify the most important research priorities and recommendations for Eating Disorder service provision from the perspectives of young adults with lived experience and their parents/caregivers.

Researchers from the University of Calgary, McMaster University, and Mental Health Research Canada will conduct the research, with the support of the National Initiative for Eating Disorders (NIED).

You are eligible to participate in this study if:  

  1. You are a young adult aged 18-29 who self-identifies with having an Eating Disorder and are anywhere along your recovery journey.
  2. You are a caregiver (i.e., parent, legal guardian, extended family member) who supports or has supported a young adult with an Eating Disorder.
  3. You have access to a computer or mobile device with teleconferencing capabilities.
  4. You are fluent in English.

DISCLAIMER:

We are not medical or mental health professionals. Please do not substitute the info on this site for medical care. If you are worried about the health and well being of a loved one, please seek medical attention as soon as possible.  We ask all members on this forum to be respectful of other's opinions. As with everything else on this site:  Take what you like and leave the rest.

Both Brigitte and myself are the admins/moderators for this site and as such will remove any posts that we deem disrespectful or abusive.

This website is funded through a generous grant from the Mental Health Foundation of Nova Scotia.