CRPF-seeking opions and recomendations

birdeJ · 10-12-2001, 06:08 AM

TELL the Christopher Reeve Paralysis Foundation WHAT YOU THINK THE PARALYSIS RESOURCE CENTER SHOULD OFFER.
CRPF is seeking the opinions and recommendations of all those involved in the paralysis community to help them create a Resource Center that meets your needs. If you live with paralysis, or are a family member of or caregiver for someone who is, please use the link below to take our online survey.

The survey will take about 15 minutes to complete. Your responses are confidential and the information you provide will never be sold to a third party. And your participation will be a tremendous help in making the Paralysis Resource as effective and easy-to-use as it can be!

Visit the link below now to take the online survey:
http://www.you-click.net/GoNow/a13323a43728a71658118a4

Wise Young · 10-12-2001, 07:08 AM

I just filled out the form. From the questions on the form, it appears that the CRPF is intending to provide information about care primarily and apparently not about research or cure. Wise.

SCI-Nurse · 10-12-2001, 11:53 AM

I did it too, and found it a very unsatisfying survey. Not that I am biased, but I thought is was a slap in the face that nowhere was the need for information on or resources from rehabilitation nurses addressed. Sort of carries out what was in CR's book...all the physicians where "Dr. So-and-So", but the nurses were "Suzy" or "Annie". Not sure if this is just sexist or disrespect for the nursing profession or lack of information about the key role of the rehabilitation nurse or all three.

I also noted the failure to address at all research or cure information.

In addition, being forced to choose only one response in some areas was unsatisfactory. While I am a health care professional, I am ALSO the family member of a person with paralysis, but could not check both.

(KLD)

[This message was edited by SCI-Nurse on October 12, 2001 at 08:33 PM.]

cheesecake · 10-12-2001, 01:46 PM

I was disappointed that the survey was not very user friendly ie: you could not push enter to go to the next page but rather had to get to a small "NEXT" button. For a survey that focuses on paralysis, I would have hope the form would have been easier to use and the questions less redundant. The SCI professional was definately left out of the equation. I passed this info on to a CRPF board member. If they don't know then they can't fix it.

Scorpion · 10-12-2001, 02:40 PM

I didn't even make it through the whole survey.

~Rus

"Because you're not promised tomorrow." ~ Stuck Mojo

Jeff · 10-14-2001, 02:18 AM

I also thought the questions reflected a "care-based" mentality so prevalent in the community. I was glad to finish the survey and see Research prominently represented on the CRPF web site.

My thoughts while doing the survey were always that this resource center would be so redundant with a lot of what we have here. It occurred to me that they should have approached Dr. Young about a close colaboration or merger with this site. I'd like to see unity and a concentration of effort wherever possible.

My freeform response to what they could provide was : To provide leadership and organization in the struggle to raise awareness and funding for cure research. I'm sure they believe they're doing that, already. No one is leading or organizing me, however.

I think this effort is meant to bouy or balance his cure-related efforts. I wish the community could be more cohesive for greater impact.

10-12-2001, 06:08 AM	#1
birdeJ Member Join Date: Sep 2001 Posts: 52	CRPF-seeking opions and recomendations TELL the Christopher Reeve Paralysis Foundation WHAT YOU THINK THE PARALYSIS RESOURCE CENTER SHOULD OFFER. CRPF is seeking the opinions and recommendations of all those involved in the paralysis community to help them create a Resource Center that meets your needs. If you live with paralysis, or are a family member of or caregiver for someone who is, please use the link below to take our online survey. The survey will take about 15 minutes to complete. Your responses are confidential and the information you provide will never be sold to a third party. And your participation will be a tremendous help in making the Paralysis Resource as effective and easy-to-use as it can be! Visit the link below now to take the online survey: http://www.you-click.net/GoNow/a13323a43728a71658118a4

10-12-2001, 11:53 AM	#3
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,341	Survey I did it too, and found it a very unsatisfying survey. Not that I am biased, but I thought is was a slap in the face that nowhere was the need for information on or resources from rehabilitation nurses addressed. Sort of carries out what was in CR's book...all the physicians where "Dr. So-and-So", but the nurses were "Suzy" or "Annie". Not sure if this is just sexist or disrespect for the nursing profession or lack of information about the key role of the rehabilitation nurse or all three. I also noted the failure to address at all research or cure information. In addition, being forced to choose only one response in some areas was unsatisfactory. While I am a health care professional, I am ALSO the family member of a person with paralysis, but could not check both. (KLD) [This message was edited by SCI-Nurse on October 12, 2001 at 08:33 PM.]

10-12-2001, 01:46 PM	#4
cheesecake Moderator Join Date: Aug 2001 Location: USA Posts: 7,522	Ditto the Frustration I was disappointed that the survey was not very user friendly ie: you could not push enter to go to the next page but rather had to get to a small "NEXT" button. For a survey that focuses on paralysis, I would have hope the form would have been easier to use and the questions less redundant. The SCI professional was definately left out of the equation. I passed this info on to a CRPF board member. If they don't know then they can't fix it.

10-14-2001, 02:18 AM	#6
Jeff Senior Member Join Date: Jul 2001 Location: North Brunswick, NJ, USA Posts: 6,858	I was happy to do the survey I also thought the questions reflected a "care-based" mentality so prevalent in the community. I was glad to finish the survey and see Research prominently represented on the CRPF web site. My thoughts while doing the survey were always that this resource center would be so redundant with a lot of what we have here. It occurred to me that they should have approached Dr. Young about a close colaboration or merger with this site. I'd like to see unity and a concentration of effort wherever possible. My freeform response to what they could provide was : To provide leadership and organization in the struggle to raise awareness and funding for cure research. I'm sure they believe they're doing that, already. No one is leading or organizing me, however. I think this effort is meant to bouy or balance his cure-related efforts. I wish the community could be more cohesive for greater impact.

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10-12-2001, 07:08 AM	#2
Wise Young Administrator Join Date: Jul 2001 Location: New Brunswick, NJ, USA Posts: 37,975	I just filled out the form. From the questions on the form, it appears that the CRPF is intending to provide information about care primarily and apparently not about research or cure. Wise.

10-12-2001, 02:40 PM	#5
Scorpion Senior Member Join Date: Jul 2001 Location: Colorado Posts: 5,598	I didn't even make it through the whole survey. ~Rus "Because you're not promised tomorrow." ~ Stuck Mojo