How to Get the Word Out About the ACE Study Cheap

Here is a summary shot of our findings so far. It is of course non-scientific (N = 86), but the bottom line is that ACEs are common everywhere.  Our most common ACE was Emotional Abuse and more folks had 4 or more ACEs at 34.6 percent than had no ACEs at 32.2 percent.  Most surprising 17.3 percent had 6 or more ACEs.  I think that there is a lot of generational trauma in small rural areas coupled with few services.  

 

 

 

 

Here is a small write-up I put on Northern Michigan ACEs:  https://www.pacesconnection.com/...d-experiences-survey

So for an update, I have been asked to speak at the NE Michigan Human Services Coordinating Committee which is a group of organizations providing services to our regional residents. I think I will mainly focus on how trauma-informed communities can help w/schools, juvenile justice, medicine and all sectors and the benefits for service agencies of a trauma-informed community---- I think I will put in a little extra about trauma-Informed medical practice as there are folks there from the hospital too.  Any suggests of what I should cover for maximal benefit? There are folks from the local library, early childhood (but I am also part of an early childhood grant and there will be education on trauma and toxic stress to a wide set of early childhood groups at an educational meeting we are having tomorrow), child welfare, homeless, child and family services, our DV shelter, our CAC and folks providing services for the elderly among others. I'm pretty excited about this opportunity because these groups would be great for the team and we were scheduled for next February now we have July. Thoughts are always welcome!!!

Yes the survey monkey is just the ACE questions. The link is open now for area residents. I know it is crowded but that is because I wanted all the information on 1/2 a page due to cost.   I wanted the questions directly there out in the open because I wanted people to know the types of adversity that were in the study and are harmful.   I didn't just put a link to the questions because they are powerful and many people don't have smart phones or internet access so I wanted the questions to still be available for those folks also.  I wanted them to have the questions that they could cut out from the flyer to share with friends even if they didn't have a computer or printer and to be able to cut out, take to their doctor, put in their wallet, share with family, church, trauma-informed school meeting etc. Thanks everyone. 

Sounds like you're doing everything possible in your community to raise ACEs awareness Tina. You're right - in the face of what you describe, I agree - let the patients bring the info to their doctors and they can get curious and educated from there. But I would also keep up your efforts to bring the info to their attention by other means as well, using every forum and platform you can! Multiple communication routes will increase the potential uptake. And ultimately a trauma-informed community would be a wonderful outcome.

 

(Just as an aside, New Zealand is the only country apart from the US in the developed world where direct to consumer advertising of psychiatric [and other] medications is possible. It's hotly protested by the mental health consumer movement and many clinicians both here and in neighbouring Australia, where this sort of advertising is banned.)

I distributed the questionnaire during a presentation at a conference and provided an email address for myself in case anyone wanted to discuss their results. That way they could either anonymously email me or email me their phone number.  Just one of 20 wanted any contact and that was email.

I might look into placing the questionnaire in the Thrifty Nickel...a free buy/sell/swap publication? Was the survey monkey just the ACEs questionnaire?

1) Need a few more line breaks, the first paragraph is too bunched together, make it easy on the eyes.

.
2) We need to Answer "Whats in it for me?" Offer all the benefits of taking the survey !

.
3) I would not include the questions in the flyer. I would hint at the questions but not include them.
.

World Health Organization Adverse Childhood Experiences International Questionnaire (ACE-IQ)

Back in 2011 the World Health organization (WHO) was testing ways to ask the ACE questions. WHO called it The ACE International Questionnaire (ACE-IQ)
.

Have a look at this document that was prepared from their meeting on 2011 after all the pilot testing.

.

WHO also wrote both a question guide and an interviewers guide
.

These might help in developing your flyer.

You know, giving the word to the doctor first about ACEs might be good - I live in a really small community that I am working to get trauma informed, when I was trying to get the word out about Dr. Felitti's visit, I went to every doctors office and dentists office in town and provided them with the informational flyer on ACEs and the ACE study and it's importance.  Not one of those physicians came, the only ones that did were ones that were my pediatric colleagues and one did so incredibly reluctantly so the docs have the information on ACEs, if they bothered to read it -- but I have gotten the word out about ACEs in several other ways too -- just pestering the heck out of the local newspaper whenever I see something that could be ACE related -- like our current heroin epidemic or when I went to a meeting on ACEs and so the terminology is out there - but doctors are a recalcitrant bunch.

 

But if I had not got the word out to the point where doctors here should by now know about the ACE study, still why not let the patient bring in the information.  I don't know if you have these types of adds in New Zealand, but we have direct to consumer ads on TV that say "Ask your doctor if XYZ drug might be right for you".  Many of these patients oftentimes are provided with a free coupon that they can get online that is basically a script and they bring that in with the expectation that the doctor will sign.  I have been asked occasionally about a new medication (usually a new atypical antipsychotic for a behavioral problem) and honestly, there have been times when I have not heard about the drug (because I don't watch TV).  Or I have to continue the psychiatric care for a pediatric patient put on a new anti-psychotic generally being used off label on kids and I don't have any paper work from the psychiatrist or notes.  Getting the doctor information is beneficial but is not essential for us to do our jobs…  because patients are bringing in clippings from the internet about all types of things ranging from alternative treatments for colic to elimination diets or megavitamins or blood chelators for autism.   I have to look up many of these things and am honest with the family that I currently don't know but I will check this out.  I feel like  having the patient /parent bring in the information about ACEs and "asking their doctor" could be an effective way to get recalcitrant doctors to listen and learn and  to educate themselves about the ACE study and it's importance.  

Asking your doctor is a good start - if you added this to the message in the community paper Tina, then you might also want to give your local doctors a heads-up with some information about ACEs and that patients may talk to them about it! (This is assuming your community has more doctors than just the service this idea started from.) Which starts to move this into a more multi-pronged public health campaign, not that that's a bad thing - just more work and possibly more money, which might defeat the original purpose of this post.

 

In terms of who else you might direct people to call or contact, I'm not sure what kind of services you have access to where you are.  I agree a crisis line is a bit over the top.  Here in Christchurch, New Zealand we are lucky to have some good peer support services, including a Warm Line - a non-crisis phone line staffed by trained volunteers with lived experience of mental distress.  Also very good peer workers supporting people with anxiety. But you're making me think... what we need is more peer services with an explicit trauma informed flavour.

 

Whoever's contact details were provided, I'm thinking it does make sense to let them know ahead of time and get them on board about ACEs.  This is turning into a public health campaign, and quite a good one!

I like the idea of "ask your doctor"  as this would be a very good way to educate doctors about adversity and how it affects patients' physical and emotional health.  

I like the idea of having a number to call or advice to discuss with your doctor. Marilyn Benoit

Fiona, I would double like your response if I could but I cannot. Thanks for the suggestion. I think it is a really good one.  I do have a question... what would be the best place to refer people for that type of emergency help. I think 911 is too drastic. Most would never be imminently suicidal.  People might be distraught.... but is there a good place where folks can just call to talk to someone where no one is going to track their cell phone and take them to the psychiatric ward for suicidal ideation? I am actually asking a serious question because I like your idea, but I want the place to call to be supportive and trauma-informed like - hi, I am not suicidal - i just want to talk to someone.. I learned about this new study called the ACE study... and well.... I was sexually abused and emotionally abused, and neglected and I am feeling a little depressed and down and I want to cry..... can I talk to you ... then I will be fine..... Is there a good place where someone could call and have that kind of conversation? I actually don't know but I would like to know if such a thing exists... if not maybe we need to find a way to make this place??? (as a doc I can see all kind of medical - legal obstacles and resistance). 

Absolutely, Tina, ask the questions! Get the information out there. This is great work. It's just adding that fine print that here's somewhere you can call if this information has come as an unwelcome or distressing surprise.  But don't let my comment be a justification for not asking the ACEs questions. We have to ask - we have to raise awareness - or nothing will change.

Hi Fiona, 

 

I understand your concern. I felt really bummed and depressed after answering the "resilience questionnaire." And it did occur later - much later.  I read the questions the first time and the emotions didn't sink in.  But later they sank in a lot so I get what you are saying.  

 

Dr. Felitti has asked over 450,000 patients the ACE questions and no problems yet. The  information from the ACE study is powerful and life changing and I don't want folks to automatically come to the conclusion that well, we cannot ask that because it will cause problems - do we have proof?  Everyone knows (even our patients and they know it well) that all the 10 aces categories occur, whether that be physical abuse, emotional abuse, sexual abuse, etc.... We know that, patients know that.  So providing this information is really a public health notification and the information is public health information that everyone has the right to be aware of.    If you never read the warning on a pack of cigarettes concerning the potential for lung cancer and then all of the sudden you saw the warning, you might also be scared..... 

 

We can find a workable middle ground...yes folks could experience some anguish later after this sinks in -- just like I did answering  the resilience questionnaire (but I already knew that I was never loved or cared for as a child - and if you have ACEs you know that too). It is the silence and secrecy and shame that keeps this poison in the body.  It must be let out... Have you ever seen anyone with a large MRSA carbuncle?  Probably not.... It is really painful. The treatment which must be done is drainage, which is even more painful than just letting it sit and "fester" but it has to come out.... 

 

Would the grief that manifests be any different than finally accepting the grief which one holds from all that hurt you and all you lost? I don't think so.... I am not making light of your suggestions.. I will consider them in the future as I spread the word about ACEs... But ACEs is a public health problem just as once there was a major public health problem when surgeons refused to wash their hands before there was a firm establishment of germ theory... We must wash our hands and we must acknowledge ACEs.  

 

Thanks for the information.... 

 

http://acestoohigh.com/2012/10...n-an-obesity-clinic/

 

 

Hi Tina, this is a creative and cost effective idea to get a sense of your area's level of need in regard to ACEs, well done.

My only caveat would be to agree with Marilyn, and acknowledge the potential triggering nature of the questionnaire. Agreed with you, also, that someone in the midst of their ACEs may be more likely to find this a potential life-changer and that's great. But those that have moved on and are busy papering over the cracks could find this quite a devastating revelation. I'd just suggest adding some help line / warm line contact details, and a statement to contact them if reading the piece has brought up any distress. Just acknowledging the potential for this.  I'm aware of having completed hundreds of "routine" psychological questionnaires in my life in the course of receiving talking therapy treatments and participating in research studies, and being horribly triggered, often. And I'm sure many of the researchers involved would also assert that no one has ever been triggered - as survivors we can be very very good at holding it together until we get home (or even just as far as the car), and then falling apart for however long it takes to get it back together again.

Thank you Dr. Vincent!!!!

Very imaginative, Tina Marie.  Congratulations!

great discussion!


In a message dated 5/26/2015 1:12:43 P.M. Eastern Daylight Time,
communitymanager@acesconnection.com writes:

When I would put the information handouts that Jane had made up on ACEs and Toxic Stress in the waiting room, they disappeared quickly too. I have been screening for ACEs for a long time and haven't had anyone triggered.  I also, as a teen had an ACE score of 10 (my dad was in jail for a year as my mom ran off with another man leaving us alone in a trailer with no money or resources for a year and when my dad got out of jail, he started drinking heavily and was very violent - I cannot imagine those questions would have triggered me more than what I was already going through, but your point is still well taken).  The worse thing for me was when CPS became involved and I got separated from my brother and sister.  Nothing could have been worse for my mental or physical health than that experience because as the oldest, I was always looking out for and doing my best to protect them and always feel bad because I didn't do a good job but it was an impossible job. I wish someone had known about this information and could have shared it with me so sooner as that would have helped me a lot.  

 

Thanks for the reminder Marilyn, Tina

My only concern is whether some trauma triggers may be there and there is no one with whom  to discuss the issues. I have them in my private practice office waiting room. They disappear! But it stimulates discussion. We are now incorporating the questionnaire in our intake at Devereux, and this can then help the clinician in the evaluation session. Some of our older teenagers have scored as high as 9!!!

Great idea Tina Marie!  Keep us posted.