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"Caregivers as Partners in Treatment" Twitter Chat with Ashley Solomon

Ashley Solomon, PsyD, CEDS, Executive Clinical Director at Eating Recovery Center, Ohio hosted a twitter chat last night with the Academy for Eating Disorders on "Caregivers as Partners in Treatment" with several parent advocate guests. The Q&A from the twitter chat appears below.
Q1. Prior to your child starting treatment, what role did you expect to play? How was it different than what you expected?

#AEDchat L A1 I did not initially recognize how active a role I would play in treatment.

#AEDchat L A1 I did not realize that food was medicine and that I would, in a sense, be responsible for administering each dose of medicine.

#AEDchat N A1 It was daunting to realize I had to do at home what was done inpatient. I became less of a ‘parent’ and more of a caregiver

#AEDchat N A1 I had no idea of how difficult it would be to ensure full daily nutrition but I was, as any parent, deeply committed.

#AEDchat A1 Once I understood why I had to do what I had to do, it was easier to do it. Understanding as biological brain disorder helped greatly

#AEDchat L A1 Life Stopped Until She Ate. Her life and my life: I stopped working and nutritional rehabilitation was first priority.

#AEDchat N A1 Different than any other illness my child diagnosed with: my role key to my child’s recovery-alliance with clinical team vital

#AEDchat

Q2. What was your initial experience like in navigating the world of #eatingdisorder treatment as a caregiver?

#AEDchat L A2 It’s isolating & there is a STEEP learning curve. I found @FEAST_ED prior to the dx so was able to hit the ground running.

#AEDchat L A2 Limited options for treatment was a significant barrier. Finding a provider who practices evidence based care a challenge.

#AEDChat A2 Felt uninformed. I didn’t know what I didn’t know. Difficult to feel like team member without proper understanding.

#AEDChat N A2 Parental confidence had been shaken in trying to address ED prior to dx w/out support

#AEDChat N A2 I knew how to parent but not how to ‘refeed’. I used ATDT for the nuts and bolts and treatment team for guidance and support.

#AEDchat N A2 GP knowledge limited so I had to trust my instincts to overcome self doubt & push thru to find help my child needed

#AEDchat Q3. What was most helpful in the process of helping your child recover from an #eatingdisorder? #AEDchat L A3 Knowing what I was up against right away. Serious illness required immediate response

#AEDchat L A3 The peer support forum www.ATDT.org gave me a ‘playbook’ for understanding EDs; what to expect & how to manage.

#AEDchat A3 Understanding weight restoration only ‘first step’ to recovery. Full physical, cognitive, emotional recovery takes much longer.

#AEDchat N A3 Learning to separate the Eating Disorder from my child. Realizing what I was seeing were symptoms of the disorder

#AEDchat L A3 Had to understand the ‘why’ and the ‘how’ before I could do “what’ I had to do.

#AEDchat. A3 Recognising I didn’t cause, she didn’t choose and food is medicine

#AEDchat N A3 Aiming for State not weight: not settling for less than my child back to her happy “normal” self

#AEDchat N A3 Learning how to tolerate distress - my child’s, my partner’s, and my own: the only way out is through

#AEDchat L A3 Help managing the structural barriers i.e. financial, siblings,work, that impinged on my ability to refeed d

#AEDchat Q4. What was your experience with your child’s #eatingdisorder treatment team - did you feel heard and included?

#AEDchat L A4 We had a fantastic team. I felt heard. They consciously gave the message that I was ‘team member’.

L A4 The treatment team shored up the relationship & my parental role.

#AEDchat N A4 They acknowledge the impact of ‘caregiving’ on entire family and realized supporting the parents ultimately supported patient.

#AEDchat N A4 At 1st we were separate & ineffective: when we joined forces we were strong & SO EFFECTIVE

#AEDchat A4 We had to create own own team. Made it much harder for entire family. #AEDchat

Q5: What does collegial alliance look like bt parents and the treatment team? #AEDchat L A5 Support us to continue to parent. See job as helping Parents help their children..

#AEDchat A5 Empower parents with information, education and skill training. Direct them to resources to help with time outside of session

#AEDchat N A5 Transparent approach to treatment decision making included families. Consult rather than direct. Advise and let parents decide

#AEDchat L A5 Collaborative trouble shooting in response to my reports of what happening at home. Let me lead conversations over what needed

#AEDchat N A5 Help caregivers with ‘back up plans’. Families often need practical assistance to get their job done.

#AEDchat L A5 Our treatment team helped w/ NG tube back up plan. Not eating not an option. Full refusal of two meals = NG tube at hospital .

#AEDchat N

Q6: Why is it so important to have a collegial alliance bt parents and the treatment team?

#AEDchat N A6 Clinicians collaborating with each other & with carers closes gaps so ED can’t thrive. Alliance counters triangulation

#AEDchat -A6 Recovery can be a long, slow process and alliance helps stave off caregiver fatigue .

#AEDchat L A6 Families provide care. In reality, they are team members whether treated so or not so best to educate & support them in role.

#AEDchat N A6 Gaps are closed so the patient can feel trust & confidence in the team - remove choice & reduce anxiety

#AEDchat L A6 Treatment team can keep parents motivated. Children can recover without being motivated to do so. Parents need to stay engaged

#AEDchat N A6 Treatment team can help parents regain confidence

AEDchat

Q7: What was helpful in facilitating engagement on the ‘road’ to recovery?

#AEDchat A7 Practical assistance to ensure that ‘not eating’ was not an option.

#AEDchat N A7 What to say (or not say) during a meal; How to stay calm; how to close loopholes. These skills assist in helping caregivers feel empowered

#AEDchat L A7 Connection to additional support as treatment team not in home all day.

#AEDchat Q8. What was the most difficult part of communicating with your child’s #eatingdisorder treatment team?

#AEDchat L A8 We had a great team so can mostly speak to what was done right: They listened and adjusted based on what needed.

#AEDchat A8 Raising differences sometimes intimidating. I wanted to push for higher weight and there was a slight ‘balk’.

#AEDchat L A8 I felt I understood my role so communication easy- if had not feel supported/empowered much would have been difficult.

#AEDchat N A8 Overcoming self doubt & reluctance to question/suggest to medical profs: learning to trust my instincts about my child’s needs & my role

#AEDchat

Q9. What lesson was the hardest to learn in the #eatingdisorder treatment process?

#AEDchat L A9 Much of recovery rested on family’s shoulders. Treatment team invaluable but much turns on day to day, in home, management.

#AEDchat A9 That it will take longer than you ever anticipated.

#AEDchat L A9 Dealing with a tremendous amount of misinformation outside of the eating disorder world. Having to caregive AND educate.

#AEDchat N A9 Learning to tolerate distress - my child’s, mine, & family’s. To stay on the shore while she rode the wave: knowing the only way out is through

#AEDchat

Q10. What advice would you give to parents just starting out in the process of #eatingdisorder treatment?

A10 Full recovery is possible. You did not cause this and you can get your loved one back.

#AEDchat A10 Caregiving is not normal parenting. Parents need to learn tools to be able to support a loved one at home.

#AEDchat A10 Resistance to treatment is normal. It is a symptom of the illness and can be a cry for help.

#AEDchat L A10 A little better is not good enough. “Functioning” is not good enough. It is alright to hope and aim for full recovery.

#AEDchat N A10 1 day at a time, 1 meal at a time, 1 bite at a time

#AEDchat N A10 learn as much as you can www.feast-ed.org a great place to start

#AEDchat Q11. Why did you decide to become an #eatingdisorder parent advocate?

#AEDchat L A11 Stigma & misinformation create barriers to identification & accessing proper care. I felt compelled to share info/resources.

#AEDchat A11 We had good healthcare services yet my daughter nearly died. Parents need to speak out about the problems patients face.

#AEDchat L A11 It is difficult to caregive AND advocate. I was helped by www.ATDT.org now advocate so others can focus on caregiving.

#AEDChat A11 It’s an illness that gets ‘lost in the cracks’. Often absent from both mental health & pediatric illness conversations.

#AEDChat N A11 Early detection & intervention so very crucial however often missed at primary care level. Parents can help change this.

#AEDChat N A11 Fnding www.FEAST-ed.org and www.ATDT.org the reason daughter is in strong recovery so time to pay it forward

#AEDChat

Eating Recovery Center and Pathlight Mood and Anxiety Center are accredited through the Joint Commission. This organization seeks to enhance the lives of the persons served in healthcare settings through a consultative accreditation process emphasizing quality, value and optimal outcomes of services.

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