A Health Survey for Those with Chronic Conditions (for My Graduate Program)

[awbw8]

Hello TT!

I'm a long-time member, former staff member, former lurker of Tinnitus Talk and owner and operator of a life with tinnitus.

My path to growth from the very dark place I began when I got tinnitus has lead to working with the service design and research tools I have at my professional disposal; I am working (very hard) to make sure that I can serve the needs of those with chronic health conditions, such as tinnitus. Indeed I plan to center my thesis work around tinnitus. These projects and surveys are the smaller first steps.

If you would be able to answer these few questions it would really mean so much to me personally; your experiences are valuable and I want to make sure the world knows that now and moving forward.


Thank you so much, in advance, for your time. It's all anonymous and pretty short!

https://goo.gl/forms/xmbJjTKnU3jID4Fr1


Rachel

 

[Tamika]

Indeed I plan to center my thesis work around tinnitus.

completed survey
Hi Rachel - keep up the great work !

 

[GregCA]

I filled it out, but I think it may be missing a few options:
Question 4, there is no way to answer "0 supporters" - it would be helpful to you to determine who feels completely isolated.
In "Which of the following feels applicable to your conversations?" perhaps you could have an option: "I don't ask for help because I know that my condition is incurable".

 

[Tamika]

Question 4, there is no way to answer "0 supporters" - it would be helpful to you to determine who feels completely isolated.

I agree, I was looking for the same option.

 

[awbw8]

I filled it out, but I think it may be missing a few options:
Question 4, there is no way to answer "0 supporters" - it would be helpful to you to determine who feels completely isolated.
In "Which of the following feels applicable to your conversations?" perhaps you could have an option: "I don't ask for help because I know that my condition is incurable".

Hi Greg,

That is a very good point. We had reasons for not having added it, but I think we should have anyway. I don't want to change it at present to keep some level of uniformity, but I will definitely keep that in mind for future surveys and I will add a "comments" section to our current one now.

Thank you SO much for your feedback!

 

[Kibakiru]

Done! This is just a thought, but some of us are younger than 18 (I'm 17 myself) so you may want to include a younger age range; If you want total accuracy, anyway. Otherwise it doesn't really matter~

 

[christinefisher]

Done!
Most times, I feel like the real supporters are zero. Yeap, other family members know the issue, so you can say 1-2 supporters, and you may talk with them (maybe at the start only) and for the basics from time to time, but most times you may feel alone on this.

 

[Markku]

Fantastically crafted survey, just completed it.

Looking forward to your future missions - I know you have a lot to give to this world.

I encourage everyone to complete the survey, there's really no reason not to:

https://docs.google.com/forms/d/e/1FAIpQLSc1MY-RhlSz04hES3XGJd9wvUmHyaGYq6FUCw7_vD_FKC9PPw/viewform

 

[Reinier]

done

 

[MBH]

Done

 

[Kste Adams]

I added a comment that the answers to the questions are dependent on the condition(s) that a person has. Things like depression and anxiety can carry a stigma that make people less willing to talk about them to anyone, and the conditions themselves can make communication difficult. Since the survey made disclosure of the condition(s) optional, the authors of the survey will lack important data that would have helped them evaluate the responses.

 

[Tweaker]

Done

 

[Stakovic]

I completed a ton of surveys, it's useless.

 

[awbw8]

I completed a ton of surveys, it's useless.

Hi Stakovic,

I'm sorry you feel that way. The data is really useful and important to us in helping to build a case to our audience. Progress can feel slow and surveys are useless if you don't do anything with the information, but we have been putting in months of work around this; one step at a time.

 

[awbw8]

I added a comment that the answers to the questions are dependent on the condition(s) that a person has. Things like depression and anxiety can carry a stigma that make people less willing to talk about them to anyone, and the conditions themselves can make communication difficult. Since the survey made disclosure of the condition(s) optional, the authors of the survey will lack important data that would have helped them evaluate the responses.

Hi @Kste Adams We very much appreciate your thoughtful feedback! We did not want/feel the need to require specific health information for this particular survey for a number of reasons, but most respondents did volunteer the names of their conditions, so we are able to sift in that way for most of our data as needed. This survey is serving a specific purpose within a larger amount of work, so it isn't meant to be exhaustive, but your point is well taken and thank you!

 

[glynis]

Done
Hope your ok,
Keep up your great work.
Love glynis

 

[Bobbie7]

I have completed the survey.

 

[vermillion]

Done

 

[jimH]

@awbw8,

Pretty good survey. Good questions and not painfully long like some surveys are....

 

[BuzzyBee]

Done! And thanks for your research and hard work.

 

[Frédéric]

Done. Same remarks as @GregCA and @Kibakiru.

 

[Paul13]

I did it

 

[walkthroughwalls]

I agree that a '0 supporters' option would've been nice to have.
Also, I didn't quite get this one: "If you speak to your supporter regularly, what do you appreciate most about talking with your partner?"
Are the supporter and partner the same in this sentence? Why does it have to be regularly?

For future surveys, it may be a good idea to first get some feedback on the survey from your population and publish the improved survey later.


I'm not too familiar with service design, so... just out of curiosity, what is the 'end-product' you and your team are working on? Is it a scientific document? A guide for psychologists? Who is the party providing the service?

Good luck with the project!

 

[Why?]

I dislike surveys. However I did complete it. Sending positive vibes for your project.

 

[hans01]

Thank you Rachel, done!

 

[Bidyut saha]

Done
God bless u

 

[w-drak]

Done.

 

[awbw8]

I agree that a '0 supporters' option would've been nice to have.
Also, I didn't quite get this one: "If you speak to your supporter regularly, what do you appreciate most about talking with your partner?"
Are the supporter and partner the same in this sentence? Why does it have to be regularly?

For future surveys, it may be a good idea to first get some feedback on the survey from your population and publish the improved survey later.


I'm not too familiar with service design, so... just out of curiosity, what is the 'end-product' you and your team are working on? Is it a scientific document? A guide for psychologists? Who is the party providing the service?

Good luck with the project!

Hi there! This survey is actually coming after a lot of other research, so it was based off of prior input, but it is not a flawless survey and could have been worded better in some places, we are graduate students (and humans) so we're also learning a bit as we go, but the feedback is very much appreciated.

The final product is in the works, but is a conversations facilitation tool for supporters and patients to help make communication and problem-solving around health easier. This is something that exists at a number of high-profile clinics (Mayo for example, Patient Revolution, MSKCC) but they do it for physicians and patients. We found it can be hard to talk about health, we're trying to make it a little lighter and more engaging, even though it's a serious topic.

It's meant to be used by laymen dealing with challenges, not a tool for psychologists.

 

[walkthroughwalls]

Hi there! This survey is actually coming after a lot of other research, so it was based off of prior input, but it is not a flawless survey and could have been worded better in some places, we are graduate students (and humans) so we're also learning a bit as we go, but the feedback is very much appreciated.

The final product is in the works, but is a conversations facilitation tool for supporters and patients to help make communication and problem-solving around health easier. This is something that exists at a number of high-profile clinics (Mayo for example, Patient Revolution, MSKCC) but they do it for physicians and patients. We found it can be hard to talk about health, we're trying to make it a little lighter and more engaging, even though it's a serious topic.

It's meant to be used by laymen dealing with challenges, not a tool for psychologists.

No problem! Thanks for your elaborate reply

 

[ofaisalo]

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