Research Opportunity

[spinabifidaresearch]

We are hoping to recruit parents of individuals with spina bifida to participate in a research study through the Kennedy Krieger Institute/Johns Hopkins University and would very much appreciate any help you and your organization could provide. Briefly, using an online, anonymous survey format, the study will examine the development of children’s abilities to manage their medical and self-care skills related to spina bifida, as well as other skills required for a successful transition into young adulthood. Our goals are to first, identify when children with spina bifida develop these skills, and second, to then be able to use this information to help individuals with spina bifida transition more successfully into adult responsibilities in the future.
If you are willing to support our work, we would greatly appreciate your sharing the following research announcement with your organization’s members, either in person or through online messages/email. If you have any questions, we are happy to answer or provide more information about the study. Please feel free to contact me at the email or phone number below.

Thank you very much,
Lisa Jacobson, Ph.D.


Do you have a child (ages 10 – 29) with Spina Bifida? If so, researchers from Kennedy Krieger Institute invite you to participate in an online research study! We are interested in learning more about how and when children with Spina Bifida learn to manage their medical self-care and home responsibilities. The study does not require a clinic visit and can be completed using a computer in your home or elsewhere. The online survey usually takes about 15-20 minutes to complete and is anonymous, so no personal information such as names, social security numbers, or IP (computer) addresses will be collected. Please be aware that if your child is over the age of 18, we will ask you to obtain your child’s consent. If you have questions about this study, Dr. Zabel can be reached at zabela@kennedykrieger.org.
If you are interested in participating in this study, we invite you to go to www.psychdata.com and enter survey # 128186. We thank you very much for being willing to help us and other individuals with Spina Bifida by participating in this study!

[Dodger67]

<RANT>When are you people going to stop ignoring the people who themselves have SB? This smacks of "Does she take sugar?"
We can actually speak for ourselves!
We're really tired of being the objects of research instead of the subjects.</RANT>

[misty]

Thanks Dodger! You put into words what I was too reserved to say myself!

[Barb]

Hi Lisa,

While I don't really have an issue with the study it would have been nice if you contacted me first so I could actually make this decision as the board owner:

If you are willing to support our work, we would greatly appreciate your sharing the following research announcement with your organization’s members, either in person or through online messages/email.

I would have told you that you are going to really tick some people off. :fyi:

If you would like to post your messages in the future, I would ask for the courtesy of a request to advertise on this board!

Barb

[nolda]

I totally agree with Dodger.

[Gymp]

<RANT>When are you people going to stop ignoring the people who themselves have SB? This smacks of "Does she take sugar?"
We can actually speak for ourselves!
We're really tired of being the objects of research instead of the subjects.</RANT>

^ Totally agree!

This is what used to really bug me growing up,can he,does he,will he.....all while I sat there beside my Ma thinking,why aren't they asking me.Being referred to in the third person while you're there isn't right!

Gymp

[sean]

Mad science making a big to do about the bleeding obvious.
Give me your wage your grant and credit and I'll write your studies conclusion.
You could have a holiday, live a little.
Don't we all love being told how to live.....not!

[sean]

excuse me, I'm a tad bitter, whatever it takes, just make it better.

[angel]

gotta go with dodger on this one as well. A child having a parent speak for them is fine to a point. After a certian age (and the fact that 29 was the cutoff) it is absolutly insulting.
If you want to know about SB ask someone that has it!

Angel

[Dodger67]

What really bites my butt now is that the person who posted this "invitation" doesn't have the intelectual integrity to explain or defend their position.

Angel, the bottom age limit of this "study", 10, is to my mind about the age when a child's independent opinions must be respected - not 29!

[angel]

What really bites my butt now is that the person who posted this "invitation" doesn't have the intelectual integrity to explain or defend their position.

Angel, the bottom age limit of this "study", 10, is to my mind about the age when a child's independent opinions must be respected - not 29!

not exactly how i ment that. I totally agree with you that a child's opnions should be respected! What i obviously didn't state clearly enough is under a certian age the parent has to speak for the child. When they are old enough to understand and answer the questions asked of them then it is time for the parent to step back and let them answer that is how one learns to advocate for themselves. What I ment by the comment about the age of 29 is that it is ABSOLUTLY STUPID to put such a high age in there. You are not a child after the age of 18 legally in this country weather or not your are disabled. I think it is stupid for people to think a child of a certian age (and i agree 10 is old enough) can not answer questions about themselves but it is even more insulting when you are an adult and at 29 you have been an adult for quite a long time.

Does that make more sense.

[Barb]

Just an FYI that the original poster has contacted me and asked permission to discuss the study with you all here. It would should be a great discussion.

[sean]

Yeah, I may be an exception but I was totally managing my Spina Bifida from age 8 and living independently from 15. The legal number for adulthood is meaningless.
Being born with Spina Bifida is all normal to me, management happens naturally.
Now the transition from childhood to adulthood, a mountain for anyone.

[Dodger67]

Just an FYI that the original poster has contacted me and asked permission to discuss the study with you all here. It would should be a great discussion.

In that case I propose that we end this thread, start with a clean page and leave the recriminations and hurt feelings here.

[sean]

Yeah, I'm thinking even bad advertising is good advertising (not that we're a product), as long as Spina bifida is on the radar, it's all good.
Now lets...................contribute.

[Dodger67]

I do get what you mean. I was just adding (badly phrased) that even a 10 year old has their own independent opinions and attitudes, which must be respected.
BTW here in SA the age of majority is also 18 but as far as legal competence to consent to medical treatment it is 14.

[LisaJoy]

While I agree with you that people 18 and over should be consulted themselves, I will say a few things in defense of this researcher. First, since many of the early skills, such as walking, dressing, feeding oneself, occur before age 4 or 5, many of us will likely not remember reaching those milestones (I sure don't). Parents are in a better position to answer those early child development questions. Second, the reason they say parents of a child 10 and over is that they want to ask about things that are mastered by the age of ten. In other words, it is useless to ask the parent of a two-year-old about when their child learned to self-cath! Third, in the US they cannot conduct "human subjects research" directly with people under 18 without going through a huge amount of extra red-tape with their Institutional Review Board. The laws governing human subjects research in the US are extremely complex and must be rigidly adhered to -- a violation of the regulations will result in the loss of ALL federal funding to the host institution (not just the funding of that particular project).

I expect that the researcher went back to her research team with the issue that was raised about people 18-29 speaking for themselves, at least about many issues. They may have to develop a companion survey or modify the existing survey, both of which will require additional IRB review and approval before they can act. If she wants to conduct a round table discussion on this forum, it will also require a modification of the research protocol and the development of some means of collecting consent from participants (i.e., consent in a format that conforms to the regulations of the Office of Human SUbjects Research at the National Institutes of Health).

I think this sounds like a good research project with beneficial intent and I hope that she's able to come up with a way to modify her proposal to allow us to speak for ourselves to the extent that is possible with the limitations of human memory!

[Dodger67]

Lisa thanks for this explanation. If the OP had anticipated or responded promptly to this we could have avoided all the unhappiness.
I see that many of us that participated in this thread are outside their age range anyway so not "contaminating" the research.

[LisaJoy]

I've been thinking about possible reasons why they would put an upper age limit of 29, and here's what I've come up with. People who are 29 were born in 1980. Clean intermittent catheterization was implemented in the late 70s; there were also significant changes in the 70s with the type of bracing used (switching from metal to plastic). In the US, there was major legislation in the mid-70s guaranteeing access to public education for children with disabilities. My guess is that they considered pre-1980 to be such a different environment that it would cause problems for data analysis to include that info.

[Dodger67]

That seems quite plausible however the post does not specify that they only want US residents to participate.

[spinabifidaresearch]

Dear Members of the Spina Bifida Connection,

I am the principal investigator of the study that was recently announced on your list serve, and I greatly appreciate the opportunity to respond to the issues raised by many listserve members.

First, let me apologize to Barb, the site owner, as we did not contact her in advance before we posted our research announcement. We obviously overlooked internet protocol when we made the posting, and we will be very careful to consult site owners before posting our research announcement on other listserves in the future. Barb has since given me permission to dialogue with the listserve members, and I am thankful for the opportunity.

Secondly, let me thank the listserve members for the constructive criticism, and apologize for the irritation and hurt feelings that we may have caused. It is certainly not our intention to offend, but your posts have helped me understand how this may have happened. There is clearly a long history of researchers making assumptions about the capabilities of individuals with Spina Bifida, and it sounds like many of your experiences with researchers (or research) have not been positive. As a researcher, it doesn’t always feel good to receive critical feedback, but it’s probably good medicine for me and my team to take from time to time if we want to generate research that is valid, accurate, and respectful.

I would like to share some of the thinking that has gone into our research project, and would welcome any additional feedback you may have regarding the points that I make below. Just to clarify, the research project is not currently grant funded. The Spina Bifida Center at Kennedy Krieger helps to the extent that they can with small costs, e.g., maintaining the web-based survey instrument.

As you all know, individuals with Spina Bifida are presented with additional self-care responsibilities, over and above what most people typically have to perform on a daily basis. For individuals with SB, these additional self-care responsibilities put additional burden upon memory, attention, planning skills, etc. It’s probably fair to say that most people would struggle to meet their self-care responsibilities if they were suddenly presented with these extra self-care requirements, e.g., remembering to self-catheterize themselves 5 times a day. These additional self-care requirements make it difficult to accurately assess the adaptive functioning of individuals with SB. Most psychological and neuropsychological survey instruments have items that define self-care skills in a typical manner, and do not account for the additional self-care burden often associated with Spina Bifida. As a result, traditional adaptive skill inventories often identify self-care skills as areas of “weakness” or “impairment” in individuals with Spina Bifida, even if the person is quite competent in their ability to manage their self-care in a specialized way. In short, these instruments can underestimate the capabilities of individuals with SB. To better assess functional capabilities, we devised the Kennedy Independence Scales: Spina Bifida Version (KIS-SB). As you can imagine, functional skills on the KIS-SB are defined with Spina Bifida in mind.

While most individuals with Spina Bifida effectively learn to manage their own self-care requirements, it is very unclear when this typically happens in the course of normal development. For instance, at what age do the majority of individuals with SB self-cath regularly without prompting or reminders from parents? Several list serve members correctly point out that many youth with SB do this at an early age, but this is probably not the case for everyone with SB. Our intention in creating the KIS-SB was to help clarify the maturation patterns of these types of self-care skills of individuals with Spina Bifida. Our hope is that this type of information will help guide treatment planning and help identify youth with SB who might be at-risk for difficulties assuming self-care responsibilities as they approach adulthood.

To obtain this information, we rely heavily upon parent report. This makes more sense when used in research with children or adolescents with SB, but may raise eyebrows when applied to adults with SB. In the transition process, however, there is little reason to think that there is anything magical about “age 18.” Yes, it is the age of majority, but many individuals have not yet “left the nest” by 18, and many have not yet been shouldered with the full burden of adult responsibilities (and specialized SB-related self-care responsibilities) at that time. I have been very saddened to see several individuals with SB “move out” at 18 and become overwhelmed with their self care responsibilities, with subsequent development of pressure sores, long hospitalizations, and even deaths. For this reason, we extended our age range up to 29, an age at which we felt that the process of transition into adult responsibilities would be complete for almost everyone. I agree that it seems strange to elicit parent report of the functional skills of persons over the age of 25. Would most young adults with SB be capable of providing accurate self-report of their functional capabilities in their 20’s? Of course! The question, however, is whether the minority of individuals with SB who are most at risk for poor adult outcomes (e.g., UTI’s, kidney failure, pressure sores, amputations, etc.) would accurately self-report on their specialized functional self-care needs. I’m not sure that the answer to this question is “yes.” For this reason, we have maintained parent ratings during the young adult years.

Self-report of functional abilities, however, is also very important. Unfortunately, the advertisement posted on this listserve only gave the link for parents, and neglected to provide the link to the self-report survey that is also an integral part of this research project. We are very interested in the self-assessment of young adults with SB, and we have an IRB-approved survey instrument designed to obtain this type of self-report. I feel particularly bad about this omission, and recognize its potential to appear paternalistic and insulting. Please accept my apologies for this. If Barb gives me permission, I will post the link to the adult self-report survey on this listserve.

Well, perhaps I’ve gone on long enough. I welcome any responses that you may have. I’ve already learned a lot this week, and look forward to any other thoughts or insights your listserve community can provide. Feel free to backchannel your responses to me at my e-mail address, or post them for public viewing.

Sincerely,

Andy

T. Andrew Zabel, Ph.D., ABPP-CN
Licensed Psychologist, Maryland
Department of Neuropsychology
Keelty Center for Spina Bifida and Related Conditions
Faculty, Kennedy Krieger Institute
Assistant Professor
Dept. of Psychiatry and Behavioral Science
Johns Hopkins University School of Medicine
zabela@kennedykrieger.org

[angel]

thank you for that post it does clear up a lot of questions. Some of us with SB have had bad experiences and have litterally felt like lab rats at some point in our past. I am over the age (I am 32) that you are looking for. Having posted earlier i feel the need to apologize.
I agree with you that many are overwhelmed by taking over their own care and as I have stated many times on this board parents really need to start the process EARLY in life of teaching and encouraging thier children to care for themselves so by the time they are old enough to leave the nest it isn't a shock but simply a routine. My mother did that and by the time I moved out it simply wasn't an issue. That being said I have a child with SBO (I have SB myleo) so I had to care for his issues as well including neurogenic bladder and bowel. I was 19 years old when he was born so was still pretty young myself. My mother's diligence in teaching me when I was young helped me not only care for myself but to care for him as well. Just FYI he is 12 years old and at this age takes care of 90% of his own care. The only reminders he needs is sometimes to take his meds.

Angel

[Dodger67]

As the one who took the first swipe at the original post I apologise for hurt feelings.

I'm almost 42 so also outside the age range. By the way, is this a global survey or US only? (I'm South African.)

I must support Angel and confirm that we "senior" members do strongly advise parents to teach their child to be able to manage their own toilet procedure, including catheterising if applicable, by the time they start school.
Having a stranger (also in the imunological sense) handle your catheter is practically a guarantee of having endless infections. Even more so if the facilities are less than ideal and the caregiver poorly trained, as seems to be the case in most US public schools.

On a technical note, I see that part of the problem with the first post is a failure to appreciate the difference between listserve and a public web forum such as this. With the exception of a few "members only" sections, all posts here are immediately visible to everyone. Posts are also not screened by moderators before distribution/display, which explains why the post includes a covering note clearly intended for the site owner.

Please feel free to take a look around the site, you'll soon pick up what our major issues are. You're also welcome to participate in conversations.

[Dodger67]

For some of us puberty was a difficult time and self-care actually deteriorated at some stage in our teens.

I believe it may have been "misdirected" typical teen rebellion - while others smoked pot, I stopped caring how I smelled.

[sean]

G'day Andy
Thankyou so much for the recognition of 'Additional Selfcare Responsibilities' boy have I needed to hear that, the future is getting brighter for the young with SB. Thankyou.
Hey, selfcare requirements regarding SB are so varied and individual, I just can't see a typical. perhaps within catheterising or med taking or diaper changing.
I do think it probable that the majority of kids,teens,adults learn quickly from the moment they become ?independently socialised regardless of support, it can be a do or suffer/die situation.
It's easy enough to imagine in the spectrum of SB and it's management, that there are very likely some being kept or living under a rock in need of the recognition and potential support your study offers.
Thankyou! I appreciate your effort. I'm way off your radar at 51 no kids but it warms my heart that SB is. sean.

PS. I would have thought those 'at risk' (in any modern country) would be at least reffered to a trained continence nurse advisor, ostomy therapist, social worker, health worker, psychologist, the list goes on... are we going to get 'selfcare specialist' next.
KIS-SB ain't buyin that. Thank again.

[sean]

Is this a global study, I shake my head it can't be.

[Gymp]

Hi Andy...
I still feel you're underestimating the ability of young teens and young adults with SB to remember when they became aware of their needs and responsibilities of self care.For those at risk of poor outcomes in adulthood,who you don't believe would accurately report,well how did they become like this in the first place,probably from parents who were not paying close enough attention due to work,other children,marital problems,or crises of their own.Do you believe these parents would report any better???It's a tough world out there!

Dodger brings up puberty,he has a valid point,it's something we all go through and should be factored into your study and not seen as high risk in your survey.

I'm 52 and also out of your age range,but I will say that after the age of 14 I took care of all my health needs.At that age I went to my doctor appointments on my own,I signed the consent forms for surgery,even ordered the medical supplies that I required.I couldn't expect my parents to do it,there were 3 other kids in the house and both my parents worked full time to put a roof over our heads,food and to pay for the supplies I needed.They couldn't pay attention to me 24/7.

Good Luck with this venture Andy and I do hope you get it right.It's good to see SB finally getting the attention of others and hopefully help the next generation of those with SB.

Gymp

[Dodger67]

Is this a global study, I shake my head it can't be.
Why not?
It can be if cultural factors are taken into consideration - or the study is designed to discount such factors.

[sean]

Hey Roger, your experience of misdirected teen rebelion feels like my experience of what I've always refered to as my "ignorant bliss" of my child and teen years. I cared for myself as much as I had time for, in my own world moving forward. Leaving a path of shock and horror as I wafted through. Myself constantly moving away from the funk.
Indeed my ignorant bliss I now factor into my masterfull management, it was necessary then as it is still necessary at times.
Global study, why not. just seems mind boggling huge! How could you discount cultural factors even within say the USA. the poeple in your environment (as kids and teens) are the obvious reflection of how you are. If the study is global, and say, cultural factors are taken into account, don't know what I'm thinking, WOW!!! How! beyond me.
I guess we do now have an understanding of some basic universal, proven management skills dealing with SB that need to be shared. A basic proven standard of acceptable (whole health) management practises that governments and health providers are expected to support world wide. OH I'd die a happy man.

[spinabifidaresearch]

Thanks again for all of your thoughts! We did not plan for international participation, but your posts have prompted us to think more broadly. In upcoming revisions, we will no doubt consider a wider range of international participation. Several people have told us that the wording of the current instrument is too "American" to work as an international assessment tool. Thanks again for all of your input.

Andy