re - getting the word out about sciwire

[marmalady]

Would getting a pamphlet out to rehab centers, nursing homes, hospital social workers, physiatrists, etc. be of help in letting folks know that this site exists?

I would be willing to create a pamphlet - with Wise's approval - and printing up copies, then perhaps folks who visit the above sites could distribute them. (I would mail them copies) Or post the pamphlet so people could download it and print it themselves?

Jackie

[Wise Young]

Jackie,

There is a silent majority in the disability community: the caregivers. Disability not only changes the lives of those who are disabled but also those who care for them. The silence is deafening because we know that there are a lot of caregivers out there.

Many caregivers are alone or feel alone. Most have little contact with other caregivers. All have given up significant portions of their lives. I suspect that many caregivers don't want to spend much of their spare time reading about caregiving. Most probably would rather do something else when they have the time.

Caregivers differ considerably from each other. A person who cares for somebody with spinal cord injury does not face the same problems as one who cares for somebody with head injury. Caregivers who are a friend, wife, mother, father, brother, sister, or professional have different perspectives on the situation.

Resources and services for caregivers are extremely limited. While there are a few web sites and magazines that purport to be for caregivers, I find that most of these provide very limited care information and are too general to be helpful. On the other hand, I believe that many caregivers come to this site to find out about research and to ask questions about care. They want to know and feel the hope.

I don't know the best way to reach out to caregivers. Caregivers need to know that people care for and appreciate them. They need to know that there is a light at the end of the tunnel. They need to know that there are others who share their pain, frustrations, and joy. I of course would be happy to help with any pamphlet that you may want to set up.

I was thinking that one of the services that this site can provide is a compilation of frequently asked questions by caregivers. In addition to care and cure questions, I was hoping that this forum would deal with some issues that we have not seriously addressed on these forums, i.e.

1. What is the best way and place to order supplies and equipment?
2. What kind of insurance or other kind of coverage are available for personal care attendants?
3. What services and support organizations are available for caregivers?
4. What are the political issues that are most important to caregivers?

Wise.g

[marmalady]

Thank you, Wise,

I will start working on an info pamphlet, as well as gathering info for the questions you raised; would you post the information as a separate 'forum', or include it with Caregivers forum?

Re the pamphlet, I was thinking that it would be a 'promo' for the entire site, to let not only caregivers, but folks with SCI, as well as professionals who work with them, know that there was good, solid, valid info available on all of the forum topics. Not anything fancy, maybe just a three-fold paper, with site info, your background, the qualifications of the SCI nurses, and other folks, and maybe a sample thread question or two.

I think that having them available at hospitals and rehab centers for people to pick up - even if they don't utilize them right away - would be so valuable, and maybe help to spread the word, and get more folks registered on the site.

You are so right that many caregivers don't want to hear anything, or have any time to hear what IS there; but eventually I think they need to talk, vent, gather info, learn about research, and most important, discover they're not alone - will lead them to the site.

I really am committed to getting this going; will be in touch soon.

Thank you again for your wisdom, compassion, and spirit. Jackie

[SCI-Nurse]

At our center, I have created an "SCI Internet Resources" handout that is in a rack in our lobby. Of course this site is the first one listed! It also includes sites for other discussion forums, accurate information, and other caregiver sites. It is one of the most popular handouts we have in our educational resources rack...as evidenced by the fact that it needs to be restocked nearly every other day. I update it about every 3 months as sites disappear and new ones appear.

Of course we have a disclaimer on it that the institution is not necessarily endorsing any specific site or the content on these sites.

Other centers might be interested in something similar, but probably also would not be willing to endorse any specific site, other than their own.

(KLD)

[Wise Young]

Sure, I would be very glad to put any pamphlet that you want on the carecure site for viewing or downloading... and of course it should and could be placed on the forums. Wise.

[rbyrd49100]

Is there a way to add a link to this site from search engines? Would be a great way for those newly injured and their families to find us quicker

Russ Byrd

[Wise Young]

russell,

Infopop has a service where they automatically place keywords and subjects of their forums on all the search engines. I have put all the keywords that I can think of.

The problem is not getting on the search engine lists but getting on the top of the list when the search comes out with 400 sites. To do that, we have to know what criteria each of the search engines use to sort their findings.

Despite the lack of advertisements, we are continuing to grow at the rate of 8-10 registrations a day. The site traffic is also coming back up. I am truly amazed by how fast information is put up on this site. Most of the time, anything that is relevant to spinal cord injury is put up by Max, Seneca, and others.

I would, however, really like to get more caregivers to come and post on this site. We have to let them know that they are welcome at this site and this is a place where they can discuss their trials and tribulations.

Wise.

[SCI-Nurse]

Wise, I am still running into a lot of other SCI related sites that have a link to the now-defunct Cando site. When I find them I try to contact the webmaster and ask them to update the link to this site. Not sure if there is anyway to remedy this other than asking all our users to do the same and check out the links provided on the other sites they use.

(KLD)

[Wise Young]

KLD, thanks. For others, the best way to reference this site is

sciwire.com will get you to this forum site front page.

sciwire.org will get you to the carecure site that includes most of the articles and also contains links to the forums.

[marmalady]

Hi to Wise, Russ, and KLD,

KLD, I'd love to see the pamphlet you have put together; could you send me one if I email my address to you? The idea of listing other resources was a bit beyond the scope of what I had originally thought about, but it certainly is a good one. Re other centers endorsing specific sites, maybe I'm a pollyanna, but I don't see a problem with families getting information in whatever ways there are. Besides, we wouldn't be asking for a specific endorsement (Kessler bulletin boards and pamphlet racks have all sorts of info on them - I'm sure not all have been endorsed by the grand high muckety-mucks!

Russ, as far as site links, that's a great idea, but from my own memory of first arriving at Kessler with Matt, my mind wasn't together enough to go to the web, and search through all the new, confusing data to find information, when I wasn't even sure what I was looking for. A pamphlet in the hands is there, it's concrete, and folks can refer to it whenever.

My primary goal for a 'pamphlet' was to spread the word about CareCure; just a simple, three-fold paper with information about the site, the different forums, and the qualifications of the folks who run the site.

Wise, re your idea of a supplies and equipment forum, I think it's a great idea; many times postings have been made on different forums, re other sites, suppliers, organizations, etc. To have them all referenced in one place would be a 'good thing'(I hate Martha Stewart!). We may have to have a disclaimer saying we aren't endorsing a product, etc., but are just providing information. Testimonials from folks who have used certain equipment would be a valuable tool.

Re questions of insurance coverages, would a forum be best, or a FAQ?

Re support organizations, I have to say from personal experience, that there just isn't time for caregivers to attend caregiver support meetings. Kessler has a family support group; I believe that mostly the attendance is family members of those still in inpatient care; once you're home, there just aren't enough hours in the day - unfortunately. I would love to get to more of Kessler's family meetings, but just can't get the time together to go.

Re political issues, my head turns fuzzy! I suppose there are - the fact that we are essentially unpaid PCA's, etc. - but who has the time to get organized? Especially in the first few years post-injury, when you're fighting no sleep, learning to be a nurse, pharmacist, urologist, physiatrist, and physical and occupational therapist - in addition to being a spouse, or parent, or sib! I have heard on other caregiver sites some rumblings from people about getting recognized, compensated, etc. I wish them all the luck in the world - as far as organizing myself, again time is the great enemy.

Wise, will get a draft of a pamphlet together this weekend, and get it to you. (My husband has generously offered to lend his technical wizardry to the creation!) Jackie

[This message was edited by marmalady on October 26, 2001 at 10:37 PM.]

[SCI-Nurse]

Actually, if rehab centers or hospitals such as Kessler or my center give out or post ANY patient information/education pamphlets/their own web site, the JCAHO DOES require that the institution review all content for appropriateness and have a formal process for assuring content is in conformity with standards of care and have been reviewed by appropriate in-house authorities. They do check during their surveys (we got caught on some materials from a vendor 3 years ago).

We must even review materials from the PVA or NMSS and have on file the review process and who reviewed, and this must be done at least every 3 years. So no, I don't think we will find many centers who would post any brochure or list of websites (other than their own) without requiring a disclaimer (as I have on our handout of websites). Our disclaimer states that the list is for information of available resources only, and that the hospital/center does not endorse any site or guarantee the accuracy or content of any of the listed sites. Even this list must go through the hospital's approval process.

(KLD)