"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
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 .
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
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
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
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