Yes, we have extremely broken health care systems and insurance systems in the United States. Even with those very broken systems, we can all work together and create improved treatment outcomes.
How? For nearly 20 years of coaching family caregivers, I’ve been seeing massive differences in treatment outcomes when parents and other family caregivers; are included in the team, have support, tools, have someone who has their back and helps them manage everything including but not limited to:
- Learning about these complex diagnoses
- Communication skills
- Self care
- Insurance mayhem
- Advocating for their loved one and themselves
- Grief and loss
- Boundary setting and follow through
- Tools for supporting their loved one
Years ago, The Emily Program did research on the parent support program I ran back then and it showed that it helped them learn to care for themselves and honor their strengths and gifts. You can see that research here.
This research is from 2003… Investigating the needs of carers in the area of eating disorders: development of the Carers’ Needs Assessment Measure (CaNAM) R. Haigh and J. Treasure Eur. Eat. Disorders Rev. 11, 125–141 (2003) See attachment: “If carers can be provided with the information and practical help that they require then not only will their distress be reduced, but they will also be able to be more effective providers of support for the person that they are caring for.”
In the intervening years, the research has backed up what I’ve seen in my coaching practice. Check this out from 2008…The assessment of the family of people with eating disorders European Eating Disorders Review Eur. Eat. Disorders Rev. 16, 247–255 (2008) J. Treasure, G Tod, et al. See attachment “Helping families detach from behaviours that enable or accommodate to the illness is an important part of treatment for eating disorders across the age and diagnostic spectrum.”
This information that supporting caregivers can improve treatment outcomes is not NEW. It has simply been disregarded by some. And together we can push for change.
And yet, now in 2022 I am still hearing from parents and outpatient clinicians that there is egregious treatment of parents to the point that the eating disorder is in charge and the parents are not only the target but become the puppets of the ed. And overworked clinicians in treatment centers, many of whom are very new to this work but some have been around a long time are throwing parents under the bus.
There is even an AED Position Paper on including parents for goodness sakes. Role of Family in Eating Disorders – AED Position Paper link – Academy for Eating Disorders Position Paper: The Role of the Family in Eating Disorders Daniel Le Grange, PhD,1 * James Lock, MD, PhD,2 Katharine Loeb, PhD,3,4 and Dasha Nicholls, MBBS, MD5
Whenever any of us bring up supporting the parents more, I hear people talk about abusive parents and I believe that is a cop out. Simply look at the percentages of parents who are not abusive, they far outweigh any who are. Most parents would do ANYTHING to help their child and some of the actions do anger the patient with the ed. That does not mean the parents should be thrown under the bus, that only gives ed power. Clinicians know this.
Many treatment centers are really upping the game in including and supporting parents and other family caregivers. Thank you to all who are doing that, I know you needed to get creative to make that possible. Parents are telling me that this support is making all the difference and they greatly appreciate the skills, tools and support they’re getting. Their kids are doing really well when they have this level of support and help. I’d love to hear what you’re seeing as far as improvements in treatment outcomes since you’ve implemented these programs. I bet you’re seeing much higher recovery rates long term.
What am I and others seeing too many treatment centers do, that has me taking time on this gorgeous summer day to bother with shouting this from the mountaintops AGAIN to bring you this important message? Here is the tip of the iceberg:
- Sending kids home when family has not yet had family therapy.
- Sending adolescents and young adults home to parents who’ve not been included in team and who have no idea what to do.
- Allowing the patient to call all the shots on agreements in the home upon return.
- Little to no discharge planning so parents are left scrambling at the last minute.
- No help to parents in creating agreements for return home.
- Little to no education on what parents role will be regarding food; menu planning, shopping, preparation, plating and supporting the child in meal completion.
- Little to no family therapy to work on challenges in the family system. This needs to begin right away.
- No support provided for family caregivers on coping with their distress, fears, grief and worries.
- Allowing new adults to exclude parents from ROI’s.
- Not addressing internalized “parent phobia” in clinicians who often conflate correlation and causation.
I believe much of this stems from an internalized bias against parents which has roots in decades of poor research and assumptions which conflate correlation and causation. Carolyn Costin did a powerful presentation years ago at a conference on the long sordid history of parent blaming/shaming that goes back to Eastern Europe and Freud and his cronies. Many clinicians have unhealthy relationships with their own parents which can enhance this bias against all parents.
If you know of a treatment center that needs to up their game, please share this with them and ask them how they can use this info to increase their treatment outcomes: Sheetal Patel , Autumn Shafer , Jane Brown , Cynthia Bulik & Nancy Zucker (2014) Parents of Children With Eating Disorders: Developing Theory-Based Health Communication Messages to Promote Caregiver Well-Being, Journal of Health Communication, 19:5, 593-608, DOI: 10.1080/10810730.2013.821559 Link to this article
Key quotes in my humble opinion from this research: “Research suggests the development and maintenance of adaptive coping behaviors (often called self-care) can ultimately aid in a child’s recovery because parents will be energized, confident, and better able to participate in recovery (e.g., Kyriacou,Treasure, & Schmidt, 2008; Sepulveda, Lopez, Todd, Whitaker, & Treasure, 2008; Zucker, Ferriter, Best, & Brantley, 2005). Examples of effective adaptive coping behaviors include participating in parent skills groups, taking personal time away from caregiving (e.g., reading, walking, sleeping, meditation), and talking to supportive others (e.g., partner, friend, personal therapist).”
And yes, we have some easy, ready to roll resources that treatment centers can EASILY implement at very low cost to provide much of this support to families without having to create a whole program. We’ve created the tools and they’re easy to implement. Between the HUG Kits and the Recovery Roadmaps “Going from Panic to Plan” webinar series, parents will be well on their way to feeling supported, confident, competent and calm in their caregiving.
Please do the right thing and fully embrace and support the family caregivers. There are NO perfect parents and I still say that the only people who think that a perfect parent exists is a person who has not yet experienced being a parent. Humans come with zero instructions and parents usually have zero training, please be kind. We must support and include parents if we’re ever going to improve treatment outcomes.