Family Week
I have never experienced "Family Week" because our family did not go the residential treatment route. I'm pleased to hear it is changing over time. I applaud the idea, in theory, of bringing families together at the treatment site to learn about the illness and treatment and work more intensely as a family toward recovery.
But I remain uncomfortable with the idea for two reasons. One is a concern that family education can, if done in a certain way, send a message that disempowers parents, implies blame, and sets the clinic up as the safe and caring family figure in the patient's life. It is rarely meant to do so, but families often report feeling filled with guilt for missteps, for being wrong, for causing harm, and ending the experience feeling superfluous to the process. The focus on parents needing to listen to their kids (as if their failure to do this before was part of the problem), communicate better (is there a family that couldn't do more of this?) often leaves parents feeling humbled and contrite - not aligned and clear-headed. This is distinct from the kind of family education that aligns the parents with the treatment team, orients siblings supportively, teaches about the neurobiology of the illness, coaches parents in the clinic's approach to responding to symptoms, offers tools and resources, and creates a seamless discharge plan.
But my primary concern is that Family "WEEK" needs to be 24/7. Ill children need to be with their families and parents need to be present and receiving full time training for the transition home - where the real work begins. When I bring this up to those operating in the residential environment they protest that parents can't, won't, or don't need to do this. Well, I think that all depends on how this is framed by the professionals. Yes, the family that can easily alter their lives to be there full time with ill hospitalized children is rare. But if the risk is of lifelong illness or death then families find a way - or at least have a realistic sense of the risk of not doing so. If we were talking about a critical burn injury, chemotherapy, or a car accident no one expects their child to be taken to another location and fixed - with two weekly Skype conferences to replace parental contact. No one talks about inconvenience and expense as if they were a cost-benefit analysis.
I would like eating disorder treatment providers to start EXPECTING parents to be there 24/7 and to make that the model of care. Will that be hard? Yes. Will that change the model? Yes. Will it be expensive? Compared to what: what is the value of a life, a family?
But I remain uncomfortable with the idea for two reasons. One is a concern that family education can, if done in a certain way, send a message that disempowers parents, implies blame, and sets the clinic up as the safe and caring family figure in the patient's life. It is rarely meant to do so, but families often report feeling filled with guilt for missteps, for being wrong, for causing harm, and ending the experience feeling superfluous to the process. The focus on parents needing to listen to their kids (as if their failure to do this before was part of the problem), communicate better (is there a family that couldn't do more of this?) often leaves parents feeling humbled and contrite - not aligned and clear-headed. This is distinct from the kind of family education that aligns the parents with the treatment team, orients siblings supportively, teaches about the neurobiology of the illness, coaches parents in the clinic's approach to responding to symptoms, offers tools and resources, and creates a seamless discharge plan.
But my primary concern is that Family "WEEK" needs to be 24/7. Ill children need to be with their families and parents need to be present and receiving full time training for the transition home - where the real work begins. When I bring this up to those operating in the residential environment they protest that parents can't, won't, or don't need to do this. Well, I think that all depends on how this is framed by the professionals. Yes, the family that can easily alter their lives to be there full time with ill hospitalized children is rare. But if the risk is of lifelong illness or death then families find a way - or at least have a realistic sense of the risk of not doing so. If we were talking about a critical burn injury, chemotherapy, or a car accident no one expects their child to be taken to another location and fixed - with two weekly Skype conferences to replace parental contact. No one talks about inconvenience and expense as if they were a cost-benefit analysis.
I would like eating disorder treatment providers to start EXPECTING parents to be there 24/7 and to make that the model of care. Will that be hard? Yes. Will that change the model? Yes. Will it be expensive? Compared to what: what is the value of a life, a family?
Oh yes absolutely Laura. I am a pediatrician and in the medical hospital, parents can stay 24/7 and be with their ill child. I was devastated to only have an hour a day with my sweet girl when she was at her worst! And she looked forward to those visits. It felt like a punishment to her that she couldn't have more visits. Why should that be? And shouldn't I have been there for any meal I wanted, so I could learn more from the staff??? And why so many groups with other ill girls when it just fueled the fire of ed and taught her things she didn't need to know....and she was way too sick to benefit from those groups anyway.....
ReplyDeleteIt still makes me sad and it was almost 2 years ago.
You know my story Laura. I WANTED to be there. I was told "no".
ReplyDeleteI should have run away as fast as I could. I didn't simply because I didn't have another option open at the time.
It still makes me sad. It was 7 years ago.
I wish neither of you had that experience and I wish it was not happening to families now - but it is.
ReplyDeleteThe first thing we can do, and we're doing it now, is trying to get the word out to parents that there ARE alternatives.