Invitation to Participate in an ALS Caregiver Survey

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caregiverresearcher

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Joined
Jan 24, 2016
Messages
2
Reason
CALS
Diagnosis
10/1996
Country
US
State
MI
City
south lyon
Dear fellow caregivers, this is an invitation for adult caregivers (18 years and older) who currently provide care to their loved one with ALS to participate in this important survey research! Please click on the link below to the survey, which will take about 20-30 minutes to complete. Thank you very much for your consideration. https://www.surveymonkey.com/r/NQCF2CM
 
You are identifying yourself as both a student doing research and a "fellow caregiver?" Which is it? What doctoral program are you in? What hyothesis are you testing? Your survey intro page doesn't fill me with confidence about the purpose and actionability, and certainly not publishability, of your study.
 
I think this survey could be really useful if the data is used to somehow offer more support to CALS.

I notice you have been a CALS for nearly 10 years?

Would you mind giving a proper introduction to us and tell us more about your study/research, and how you balance studying at this level and being a CALS (and what relationship you have to your PALS)?

I am a past CALS and will have trouble finding half an hour (at the least I suspect) to answer 124 question, but if it would benefit CALS I would be very happy to.
 
Anybody wants to ask about Sandra's bone fides can drop me a PM.
 
Dear all,

I am both a long-time caregiver (close to 20 years) to my husband with ALS and currently finishing up my dissertation. I am studying the correlation between coping strategies, resilience, and caregiver burden of current ALS caregivers. The instruments I am using to measure the correlations are commercially available and have all been used in many different types of research studies. Thank you for asking. I wish you peace and compassion on your personal journeys with ALS.
 
I feel like I'm missing something.

Your husband, Sandra, has had ALS for 20y (my profound sympathies), but you join in order to ask your fellow CALS to address 124 "commercially-available" items [do you mean proprietary or publicly available?] because that will improve the world by...? You didn't answer that question, I'm sorry to say, though Tillie has asked as well. There is a lot of useless research in ALS, so it is a natural question. Have you targeted a journal, for example?

You must have a lot of wisdom to share here otherwise-- have you considered that?

Forgive my skepticism, which comes naturally to us researchers.

Mike, that's "bona fides."

Best,
Laurie
 
Given the several choices I had for spelling that, we're lucky I picked the least offensive choice. :)

For the most part, I'll let Sandra establish her own, um, bona fides. But I will say that I googled her and she's a legit grad student caring for a long-time PALS. Drives a nice car, too.
 
Interestingly this same person posted her survey on another forum and gave a very long detailed introduction to herself and why she is doing this, well over a month ago.

No one replied ... no opinion implied in this from me, just sayin
 
I took this survey and it didn't take me 30 min. It only took about 15, I was happy to help this CALS! Hopefully now that you know it isn't nearly as long as you thought you may find it in your heart to help her. If it only helps 1 CALS Im willing to give 15-20 min in my busy life.
 
I took this survey and it didn't take me 30 min. It only took about 15, I was happy to help this CALS! Hopefully now that you know it isn't nearly as long as you thought you may find it in your heart to help her. If it only helps 1 CALS Im willing to give 15-20 min in my busy life.

Thanks for the report, Dizmom. I appreciate that.
 
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