Why parents and families are essential to eating disorder treatment in children

Dr. O'Toole describes, unsparingly, why clinics and clinicians should not tolerate treating patients without an involved parent, and why parents must ally with the treatment provider and with one another:

Why parents and families are essential to eating disorder treatment in children

"It just doesn’t work. Without a supportive adult caretaker, the prognosis for an eating-disordered child or young adult is grim."

Comments

  1. so your saying that people who aren't bonded with their families, for true and valid reasons dont have a chance of recovering. Your saying that in order for a person who had an abusive parents that they should allow their abusive sick parents to be a part of the recovery? WOW this is truly truly sad. Missing the point, and nowhere near encouraging to me. I hope this attitude doesn't cause people like me to give up.

    I dont have a family i can turn to, i haven't and wont. I will never allow my family to be a part of my recovery. So by this rational, I will be dying soon.

    Thank you for being so black and white, this angers me beyond words I cannot support this ignorant mentality of thinking that without parental support there is no chance of recovery?! Why not just shoot me now then. I feel like i have been shot in the heart anyway.

    I give up truly obviously your right i wont ever get better so why try.
    this is enough im done.

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  2. so what about people who don't have good relationships with their parents or families or have been disowned?

    Doesn't it seem kind of unfair to say that someone like me who isn't close to their family has a grim prognosis?

    I feel like i am being given a death sentence, there are so many challenges with recovery as it is the last thing i wanted to hear is that my prognosis is grim.

    I recognize that for those who have healthy minded and supportive capable loving parents that of course it would benefit the patient to have them involved in the recovery process but the exact opposite applies for involving sick minded unhealthy overly emotional selfish manipulative self oriented parents in the recovery process.

    The bottom line is that my mother would be too involved in selfishly thinking about herself to ever begin being involved in my recovery. Not to mention she is abusive, psychotic and nothing more than a trigger for my trauma, and the same goes for my dad. The rest of my family disowned me because i am not a christian.

    So are you saying that after being abandoned and betrayed by my entire family that without their support (which i cannot have and wouldn't want even if they gave it because their version of support is to pray for me) that I am doomed?

    And if this is not what you are saying...then what would you suggest for someone who will never have their family involved in their recovery but doesn't want to accept the death sentence implied above?

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  3. But this kind of attitude only works for a clinic in a system of choice - choice on both parts, the family's and the clinics. Clinicians within State systems are faced with the need to treat ALL their patients whether they have wonderful parents or two headed monsters.

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  4. I am so sorry to cause pain and grief. I am sorry.

    It is difficult for me to understand how a positive message - that parents can and should step up and that clinicians can and should make that possible, that this would increase the chances of recovery by great margins - would be interpreted as a negative.

    By way of analogy, antibiotics have changed the face of medicine. Given early and judiciously they save lives all over the world. But they don't cure everything, have side effects, and often have to be used in combination with other drugs or therapies. Does that mean we would not try them first? Does that mean we are criticizing those who can't take antibiotics or who have illness that is already too virulent?

    I'll start a new post.

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  5. I'm certainly not criticising the idea of antibiotic therapy early on and generously applied. The fact that Kartini exist and practice as they do is wonderful. My only concern is that health systems will HAVE to cope with the patients for whom the antibiotics didn't work, or who took them too late, or who had a bad reaction. In a system of choice as IN THEORY you have in the US, one clinic (or hopefully given the size of the population several) can provide the antibiotic therapy and others can specialise in the treatment of antibiotic resistance or side effects. In the UK the same system has to be able to provide for both cohorts and this can make it difficult for clinicians to manage.

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  6. I can understand how loving, helpful, supportive, healthy, whatever parents could be beneficial to recovery.

    But they are by no means ESSENTIAL.

    Not everyone has a Hallmark family, and there is no reason to doom them to a life of ED because of that. Nor is it necessary to bring in foster parents, as one comment on the original article states. Some people prefer to choose the people they are close to, prefer to have support systems based on things other than DNA. That does NOT make their choice of a support system any less valid than parents.

    One could go so far as to say that a support system, whether that be doctors, therapists, nutritionists, friends, family, and so on, is essential. But artificially limiting support to parents is just stupid.

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  7. In addition to what everyone else has widely said, keep in mind there are only a few Maudsley studies published to date within which the sample size was very small.

    True, it yielded favourable results, but as more research becomes available it may become clear that Maudsley is helpful for a type of ED child of a SPECIFIC personality, specific illness phenotype, specific age range or parents with specific traits.

    To say it is one size fits and anyone else is screwed is something that is not supported by research-- not yet anyway.

    Also, there is no research but anecodotal to say that it is empirically supported in the case of young adults.

    I have my own issues with Maudsley which I have commented on before, but having known individuals who have recovered without it, I would not say having a caretaker is necessary for recovery. In fact, I find that patronizing at least in relation to an ill adult. Adults with AN have various forms of functioning from very low (child-like) to in line with the chronological age. To paint everyone with the same brush is ridiculous.

    Additionally, trying different forms of therapy is NOT like trying different antibiotics. It may be difficult for a patient AND their family to switch from one ideology to another without psychological harm. For example: You cannot tell a family their child is incapable of making decisions and then say, "Oh! My mistake! This isn't working! Let them work with an ED team independantly. . ." Serial methods of therapy can be detrimental and prognosis of an ED WORSENS as time goes on -- there is no time to change from Maudsley to CBT/DBT to interpesonal therapy, etc. The approach of a team must be coordinated and consistent and it must WORK.

    A:)

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  8. "It is difficult for me to understand how a positive message - that parents can and should step up and that clinicians can and should make that possible, that this would increase the chances of recovery by great margins - would be interpreted as a negative."

    It is a positive message, but your communication often comes across that there is one and ONLY one etiology for eating disorders, a biochemical/genetic etiology, and accordingly there is one and ONLY one effective treatment for eating disorders, food.

    It seems much more likely that AN that appears in younger adolescents is different than that appearing in middle aged women and that BN and AN might have significantly different factors and that within both diagnoses there is significant variability within the diagnosis.

    While I often appreciate what you say, it frequently comes across as a grand narrative, where you know and I don't, as opposed to a discussion where we both know different things. It can be rather frustrating.

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  9. I believe this. My parents compeltely ignored the e/d (yet knew I had one) and I got no treatment for it. I'm now 37 and still struggling with anorexia (in and out of remission - but I can't ever seem to shake it for good.) I often think that if it had been treated early and aggressively, I might have had a better chance at a full recovery. I do doubt I'll ever fully recover now. I've tried so many times and it's just so damn hard. I don't blame my parents - what good would that do. But I sure as heck would do things differently if I saw signs of an e/d in my children.

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  10. Let's keep in mind that the opinion was uttered by an owner of a clinic that uses a parent-involved-method.

    It sounds like marketing has crept in, i.e., "Come to us or your kid will die." Similarly, the temptation-of-treating-a-high-profile-patient statement stood out as 1) having nothing to do with the opinion 2) refreshingly candid.

    Here's my guess: Frustrated at feeling forced to turn down some celebrity kid because the parents wouldn't be involved, the great Dr. K toots her own horn in an effort both to broadcast her integrity and to make up for some of the precious publicity lost. Think of it as journaling that somehow was made public.

    Rest assured, anorexics with crazy abusive parents, it is possible to recover as an adult on your own. I did.

    Keep at it. Focus on building a full life, not "recovering," and some day you'll find that going hungry causes more problems than it solves.

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  11. I was wondering about marketing as well.

    Dr. O'Toole's clinic is a business -- Like Remuda Ranch, Renfrew and all the other private treatment centres. The blog is a form of advertising and you will notice that most of the informative links lead to information written specifically by Kartini and/or Dr. O'Toole/her staff. This is no different than Remuda Ranch writing their own ED handbook.

    Some ED centres treat families. Some ED centres treat with religion. Some treat with a mixed therapeutic approach.

    When we look at information, we need to understand the difference between OPINION and FACT.

    In the ED field there are many OPINIONS and many professionals willing to express opinion as fact. Unfortunately, there are few facts and even less of these translate into clinical practice.

    I guess we need to keep in mind that this is one opinion -- on a blog that is polarized toward Maudsley/parental involvment. Can we be surpised if the content is one-sided or at times, biased?

    A:)

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  12. I am a huge supporter of family involvement in the treatment of ED patients of any age. That said, clearly there are circumstances in which family involvement could be detrimental to the patient. And while FBT has a better track record than any other existing ED treatment, there have been many patients who recovered without parental involvement. Thus, I agree with A :) that the blanket generalization stating that treatment without parental involvement "just doesn't work" is unfair and untrue. Instead, I would have said that "of the various methods of treating eating disorders, the evidence for FBT is strongest. Therefore, FBT should typically be offered to families when their child or adolescent is diagnosed with an ED, except when clearly contraindicated.

    I wonder if there is another variable here. Since most parents would love to be able to participate in their child's treatment if given the opportunity, it may be the case that families in which parents won't or can't participate are more likely to have abuse, neglect, addiction, severe mental illness, or other extreme hardships. These additional stressors could certainly create more emotional turmoil for the patient, complicate recovery, and worsen the
    prognosis.

    I know it is disheartening for anyone to hear that their prognosis is grim, but the sad reality is that the prognosis for all EDs is not too good, parental involvement or not.

    In sum, while the (limited) scientific evidence supports family involvement for most ED patients, there are some cases in which it is not appropriate, and some patients recover beautifully without family involvement.

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  13. You presume everyone has a family like yours and condemn all those who don't, which I think is a general theme throughout your blog posts, but particularly obvious here.

    I was raised by my mother. She was abusive and mentally unwell. I was a very thin child - she told me I was fat, put me on diets, and - when I was diagnosed with anorexia - wouldn't let me get treatment and said there was nothing wrong with me. She is now dead, and I'm trying to recover. Even if she was alive (and oh, how I wish she was, despite everything), there is no way in this world she would be getting anywhere near me or my recovery. And I prefer to think those circumstances - which happened to me when I was a little child (less than 10 years old) - do not condemn me to a death sentence. And it's pretty classist to say that they do.

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  14. Julie O'Toole8:29 PM, June 30, 2010

    Thanks for this discussion here about the role of families in the treatment of childhood eating disorders.

    By no means are all of our families "Hallmark families", yet they cope and do the best they can for their child's recovery.

    We use foster families only when one has been in place prior to knowing us, we do not initiate foster parenting for the purposes of treatment.

    As I responded (originally to "anonymous") in my own blog: There are few things sadder than an ill child abandoned, even abused, by their parents. Obviously such parents cannot be a part of treatment. In those cases where parents are abusive or severely mentally ill (often the same thing) or are dead, our style of family-based treatment can be done with another family member or close friend.

    Treatment options for adults are generally different than those for children and are frequently not necessarily "family based". We treat only children and a small group of college-aged young adults.

    You know, before I founded the Kartini Clinic to treat children with all conditions of disordered eating, children with anorexia nervosa in our area were sent to a locked psychiatric ward and several young patients spent an entire year in the State Mental Hospital. I developed a family-based treatment program (we do not do Maudsley as such) to provide families with options other than the general psychiatric unit and to stabilize children medically who were compromised enough by starvation/bingeing/purging to need it. If that's self-promotion or advertising, so be it.

    Dr OT

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