February 10, 2014

Predisposition, precipitation & maintaining factors: why they matter

OK, so "parents don't cause eating disorders" followed by a "but" are the bane of my advocacy work.

"But..." we should not have, should not now, and should do all sorts of things.

Begging the question: if we didn't cause it, then how could we have prevented our child's mental illness?

And: "AHA! If it is a brain disorder, why would it matter what parents did or do?" (I've never heard a parent say this, ever, it only seems to come from those who can't bear to let go of blaming parents)

Time to separate:
  • PREDISPOSING
  • PRECIPITATING
  • and MAINTAINING Factors

Predisposition is what I'm talking about when I say "cause." I mean there is something about this person's brain that is different and will respond to the world -- and especially to disordered eating -- in a way that puts them in special peril. This predisposition is largely genetic, brain-based, and is still largely a mystery.

Precipitation is what most people mean when they say "trigger." I'm not a fan of that term because it is used so loosely, but what is generally meant is the "the trigger" part of "genes load the gun and environment pulls..." The problem with this is the importance we then give to The Day a person's predisposition becomes mental illness. The day a young man hears from a wrestling buddy that he vomits to "make weight." The day a dancer's boyfriend breaks up with her and she is too upset to eat lunch. The healthy diet pact in the freshman dorm. Cross-country track season. A bout of flu. 

We put tremendous importance on that moment as if a time machine could fix the illness. It won't. Precipitating moments are, in my opinion, out there waiting to expose the predisposition. If not that incident it might have been another, or nothing anyone remembers later. Just because something happens on a Tuesday shouldn't make us all Tuesdayitarians.

Maintaining factors, however, are the ones we as parents have a great deal to do with. These are the ones most people confuse with "cause." We ARE in control of many maintaining factors and must address them.

For example, parents on a diet is indeed a problem for someone predisposed to an eating disorder. It is likely to delay diagnosis because dieting behaviors and thinking so closely track with what this mental illness makes the ill brain think and do. It's a mixed message: the topic of weight is a public and highly moral mission for one person, but enforced on another member of the family.  Parents on a diet also makes food and normal eating into a joyless, punitive, weight-based activity at the very time a patient deserves normal and socially supportive modeling around food and activity. Picture an alcoholic child staying sober in a bar of not-alcoholic but happily imbibing family. Uncool.

Families unable to reorient their lives toward caregiving -- too busy, too frightened, too scattered, too uninformed, too rigid -- can form a tidy cordon of safety around this mental illness just as a family may do around drug use. We can also do the opposite and be the safety net.

Families under the strain of marital discord, illness in another family member, extremely busy schedules, experiencing a natural disaster, or any of an infinite number of strains can all be "maintaining" to a mental illness that involves enormous anxiety and requires heroic parenting. Just as any major illness or accident requires reorienting and different priorities, so does this crisis.

So, when I blather on about what families need to do and stop doing when a loved one has an eating disorder I'm not talking about us causing or triggering the problem. I'm talking about how necessary it is that we provide an environment that is not maintaining to that illness. We need normal meals, good relationships and communication, supportive clinical teams, authoritative parenting, adults in collaborative harmony, siblings with their needs met. We need, if present, to deal with problems in the family that pull away from good caregiving.

We cannot afford, with ED in the house, the luxury of hiding from issues and discord that might otherwise have waited. This is not "blaming" parents. It is not saying that our actions or inactions could have prevented the illness. It is acknowledging the reality of facing a potentially fatal and invariably grueling mental illness.

If my colleagues in the ED world could stop confusing these different factors -- as we have learned to do with autism and asthma, by the way -- I predict a far more effective relationship with families. We tend to feel "blamed" (and thereby alienated) by the implication that we caused or could have prevented our loved one's terrifying diagnosis. We tend to feel empowered by understanding the power we have to create a non-maintaining environment at home.

27 comments:

  1. Love your explanation and clarity and hope the treatment world will benefit

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  2. Ah Laura the last piece is indeed the key. A painful often confusing path of what is the best actions to take that support the recovery of our loved ones. And our kids might be telling us scary frightening thoughts that cause is to " react" not step back and mindfully act. This may require us to say or do nothing in the presence of our kids terrible distress. We can validate that the fear is real and scary but we can't fix it. We can step back in a calm supportive manner and let them know we love them.
    I find this piece the toughest as my gut is constantly being challenging to help, fix intervene in so way that will make it better. We have a team, we re lucky. They are united and cohesive. It doesn't make the pain any less for my daughter in the moment. In the moment she has to find a way to find her way through.

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    1. This is so important, Lisa, and I didn't really do this part justice and should have. We often have to learn very strange and counter-intuitive parenting skills to keep from maintaining the emotional trap doors, too. It is intuitive to try to quell anxiety and to be helpful yet there are times that we become part of the emotional roller coaster: we serve as emotional regulators and we get "on the wave" instead of staying on the beach. This is SO DIFFICULT and really isn't good parenting for other types of kids. It is also impossible if we don't have a clinical team and support system that understands and supports that stance on our part!

      Keep going, Lisa. KEEP GOING.

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  3. You have effectively rephrased or actually reworded the third piece in a way that I hope will appeal to parents and others caught in the ED mire and help "get" this important concept.

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  4. Excellent post. It is extremely important to differentiate between predisposing, precipitating, and maintaining factors when discussing etiology as well as treatment. Treatment approaches that target maintaining factors (such as FBT and CBT) tend to be much more effective than approaches that target predisposing or precipitating factors (such as psychodynamic therapy). s. This probably because the predisposition may be impossible to change and the precipitating factors have already happened, so it makes the most sense to focus on what can be done here and now to help the patient get well.

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    1. thank you for that excellent reply Sarah to an excellent post from Laura. You both speak out of my heart concerning the effectiveness of FBT vs. psychodynamic therapy etc. It might take a decade at least before this will settle in as common knowledge....a long time for us to have to endure, but it seems people are slow in changeing attitudes and oppinions such as you refer to in your post Laura. (parents fault etc.) If I tell my story to collegues of mine ( i am a psychologist myself and my daughter has been sick for two years now, currently back in hospital after having finally at least tried FBT, against a lot of cynisism from the professional teams here because word is everything (except diabetes:):) is psychodynamic! I live in germany, nobody has heard of FBT here! So I get asked: ok so what is wrong with your child? What is her problem? why is she doing this, why is this persisiting etc....and they all have their own terrific ideas and interpretations that are hairraising at times, but who cares? They dont seem to, it is as if one is out there to be interrogated, no to be helped:)! so.......:(it is so frustrating to always have to go over and over this stuff with people trying to educate them, as a mom and a collegue, has got to be a task almost impossible. The faces of the people I talk to constantly signal disbelief, as if saying: no! there must be something wrong with you guys etc........now I could just lay out Lauras paper and say: READ - ahhhhh what a relief:)!!!! If only things were that easy:):) but it is a start:)

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    2. We may not be able to change the whole system and all the misconceptions at once but jeepers, we can all get started and your story is a good example of why we must. No family should face that.

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  5. Here's another reason why it is so important to differentiate predisposing factors from precipitating factors: because people are individuals. Each individual may bring different predisposing factors and different amounts of predisposing factors to the table. Predisposing factors aren't dichotomous - it's not like you either have them or you don't - rather, they exist on a continuum. A trait like anxiety, for example, can exist in varying degrees in different individuals. Some people are temperamentally anxious in all situations regardless of how nurturing their environment may be. Others are generally calmer but become very anxious under certain circumstances. Still others are always calm, cool, and collected no matter what life may bring.

    The number of predisposing factors, and the intensity of those predisposing factors, partly determines whether and when the ED will manifest. A child who is heavily loaded in the genetics department will be much more likely to manifest an eating disorder at an earlier age. It may only take one minor precipitating factor (say, a bout with a stomach virus or a nutrition lesson at school) to trigger the eating disorder. Someone with fewer predisposing factors which are lower in intensity may not develop their eating disorder until late adolescence or early adulthood, when they have experienced enough precipitating events and experiences.

    The probability of encountering precipitating events and experiences only increases with age, so those who develop EDs at older ages are clearly predisposed, but perhaps not quite to the same degree as those whose ED manifests in preadolescence.

    This would explain why an evidence-based intervention such as The Body Project (see Carolyn Becker's talk from the 2014 FEAST conference) can help to prevent some cases of bulimia nervosa and Binge Eating Disorder in older adolescents.

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  6. I'm not sure a child who is heavily loaded in the genetics department will be much more likely to manifest an eating disorder at an earlier age. The best available research suggests the opposite. Klump, Age Differences in Genetic and Environmental Influences on Weight and Shape Concerns, Int J Eat Disord
    2010 Dec; 43(8): 679-88 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2891330/ (Study of 2,618 female twins from three large twin registries.)

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    1. Just read the article--it looks at heritibility and shape/weight concerns, not diagnosis of EDs. Though there is a relationship between the two, there are plenty of folks with shape/weight concerns who never get an ED.

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    2. I don't think anyone denies there are plenty of folks with shape/weight concerns who never get an ED. The point of the Klump paper, however, is that studies are showing lower heritability of overall levels of disordered eating symptoms in pre-and early adolescent twins as compared to twins in middle and late adolescence, theoretically because of genetic effects on the biology of puberty, and the relationship between puberty and eating disorder symptoms. The full text of the Klump paper is available online for free. This body of research casts doubt on the assertion, above, that a child heavily loaded in the genetics department will be much more likely to manifest an eating disorder at an earlier age. The Klump paper, and the 64 other studies cited in it, offer strong evidence for the opposite hypothesis. That's really my only point.

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  7. Great post. Already sharing and those folks are sharing. I'm grateful for your clarity and knowledge.

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  8. As a family therapist working in a FBT center I so appreciate the clarity of this post. I firmly believe that parents don't cause ED, however; I often hit a barrier with parents as we talk about changing maintaining factors and they hear this as "blame". I will encourage all my families to read this post. Thank you!

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  9. Would somebody please give a specific example of a "maintaining factor" for which parents are responsible? I'd like to see some proof, not speculation.

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  10. Just my opinion, but one factor might be not having regular meals at home. Another might be expecting the kid-with-ED to manage his/her own food. Another might be not treating pre- or co-morbid conditions like anxiety disorder or OCD. Another might be letting a young adult with ED stay in college even though they are clearly unwell. I can think of a gazillion! These are the things that parents can work to eliminate to promote recovery.

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  11. Exactly. We have SO MUCH opportunity to be the strong and effective caregivers our children need - but that also means we have many ways not to.

    Parents can fail to get the information we need to do our job at home. We can rely on bad information, work with poor providers, get caught up in guilt or self-pity. We can fail to prioritize caregiving, allow insurance or financial limits to set the bar for action. We can allow ED to divide caregivers so that parents are arguing and not acting together. We can take the side of ED. We can choose to wait. We can lack the courage to stand up to ED. We can negotiate with ED. We can let professional indecision be in charge. We can yell and cry instead of be calm in the face of our child's distress. We can get caught up in a cycle of regulating our children's extreme emotions for them.

    There's a theme, here, however. Almost everything we as parents might do to maintain the disorder in our loved one's life is led by and exacerbated by what we face from the clinicians we entrust with advising us. If, when we went to that first doctor's appointment with concerns, we were told very clearly that this is a crisis, that life as we knew it needs to be put aside immediately, that we have a very important job to do, and that our actions are critical - how different it would be. If the clinicians we consult along the way shared any thread of common knowledge and direction. If we as parents were trusted and coached and educated along the way. If laws and schools and communities were ready and willing to support us in appropriate caregiving. If our friends and extended family had ready access to good information that helped them support us...

    I can dream!

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    1. Been there, done most of the things you warn about, have survived but have a large collection of unwanted T shirts. I agree too about the importance of clinical and family support - we have a long way to go before this is available to the vast majority of families, not least because the support isn't there for those clinicians who do "get it" - but keep dreaming Laura, one day, one day

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  12. Thanks for this post - especially the part about precipitation. In spite of everything I have not been able to stop blaming myself since I was the one that encouraged my daughter to run cross country.

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    1. This is the way I look at it. If your daughter was allergic to a particular kind of nut -- one she'd never had before and one that seem a lot like another nuts she has without incident -- and you didn't know it then HOW COULD YOU HAVE KNOWN? Sports can reveal an underlying problem, but that doesn't mean the sport itself is the problem or that we could have predicted it. Now that you know, you act. That is the only thing under our control.

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  13. Fantastic parsing of the various components; especially find the portion on maintaining the illness to be insightful and relatable information.

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  14. I just want to say something about families who can't get rid of maintaining factors due to high stresses on the family. Unfortunately, EDs don't just hit economically stable parents who speak the local language. They also hit working poor people, folks who can't speak the local language, folks who work multiple jobs, and people in very stressful life circumstances. In talking with a local children's hospital provider about how to improve ED services for ED patients, this was one thing that came through loud and clear--that everybody really can't feed at home. Feeding at home is an economic luxury. For some, not going to that job and not paying that rent would mean eviction. Everybody can't fall back on family resources, savings, etc. My heart aches for these sorts of folks. What is so sad for me is that still it would be so much more cost effective to support the family to feed at home (for example, by having an in-home caregiver who was skilled in feeding) than to have the revolving door of hospital admissions. This truly is a terrible public health problem. Unfortunately, it impacts so few people, it likely isn't on anybody's radar. As for speaking the local language, I know that my ability to speak English has been a huge factor for me in supporting my daughter, as I have been able to get the support of many experienced parents. Also, being highly educated has been a life-saver. Education is truly life-saving. I never felt confused about what I was hearing from different corners of the ED world because I can navigate research literature and such. The superiority of feeding at home (whether re-feeding, or creating a secure environment for full nutritional restoration and maintenance after medical stabilization and institutional refeeding), sang through loud and clear.

    Thank you for your informative and useful blog post!

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    1. I'm so glad you brought these points in. It is all very well and good for us to speak of ideal situations but in the real world there are practical boundaries. Money plays an enormous role in terms of access and opportunity and personal resources. Not to mention community connection and literacy to give access to information and resources.

      It is my dream that we would close the circle by making sure that patients are re-fed and supported in safety, Period. Whether at home or in a hospital or with home health aides is less important than that it should be a bottom line. A patient should not languish because the only choices are to remain uncared for at home or to wait for periodic crises for the appropriate level of care.

      !

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  15. I can only imagine how difficult it must be to re-feed at home.

    I do want to thank you for the info you put out there. i am an adult in recovery, and Maudsley is not an option for me. But, over the past year, due to many factors, how much I ate became less solitary and I began to deal with others encouraging me to eat more, or even plating my food - and let me tell you, it helped so much with the anxiety. I only wish someone had been around early on to do that! Others have also taken over y gym membership, and having it off the table is such a relief. I still struggle, a lot some days, but am significantly better off for the weight I have gained, much as ED hates it and tells me to lose it.

    Kudos to all the parents who do Maudsley. It's a huge sacrifice, but I bet so worth it when an option.

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  16. Great information here! And let's not forget, this is the time that parents need to show UNCONDITIONAL LOVE towards their child. The best advice I got while dealing with this was from a parent in my Parents of ED children group: picture your ED child not as they are in the grip of ED, but in their radiant best - the true self you that you as their parent know is "in there" waiting to bloom. Take every opportunity to tell them you love them, and that you firmly believe that they have the power within themselves to heal and become their glorious true self, free of ED.

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