Resource Questionnaire - People with MS

We are creating new resources for people with MS, and we need your input. We would love to hear your thoughts on what's missing, what needs updating, and how we can better provide information for New Zealanders living with MS.

Please take some time to answer these questions providing as much detail as possible. Your comments will only be seen by MSNZ staff members. You can view our privacy policy here. Your answers can be provided anonymously.

If you'd prefer to talk, please email: helen@msnz.org.nz with your contact details.

These are the resources we are updating - you may want to refer back to this list as you answer the questions.

Information Series:
- Beginner’s Guide to Multiple Sclerosis
- MS and Fatigue
- MS and Your Emotions
- MS and Your Bladder and Bowel
- MS and Visual Problems
- MS and Spasticity
- MS and Sexuality and Intimacy
- MS and Speech and Swallowing
- MS and Pain
- MS and Changes to Thinking and Memory

You can view the Information Series booklets online here.

Knowledge is Power series:
- Dealing with your diagnosis
- Disclosing your diagnosis
- Managing your MS
- Disease modifying drugs for MS
- Working with your doctor
- The impact of MS on your family
- Maximising your employment options
- Building and maintaining intimate relationships
- Parenting issues for people with MS

Question Title

* 1. When was the last time you read or referred to one of the MSNZ resources listed above?

Within the last week

Within the last month

Within the last year

More than a year ago

I've never used the MSNZ resources listed above

Question Title

* 2. If you haven't used any MSNZ resources, why not?

I didn't know MSNZ resources existed

The topics I want to read about aren't covered by the MSNZ resources

The MSNZ resources aren't engaging

I prefer not to read about MS

Other (please specify)

Question Title

* 3. The topics currently offered by our information booklets are listed below. Please grade each on how relevant the subject is to you.

	Not relevant	Somewhat relevant	Quite relevant	Very relevant
Beginner’s Guide to Multiple Sclerosis	Beginner’s Guide to Multiple Sclerosis Not relevant	Beginner’s Guide to Multiple Sclerosis Somewhat relevant	Beginner’s Guide to Multiple Sclerosis Quite relevant	Beginner’s Guide to Multiple Sclerosis Very relevant
MS and Fatigue	MS and Fatigue Not relevant	MS and Fatigue Somewhat relevant	MS and Fatigue Quite relevant	MS and Fatigue Very relevant
MS and Your Emotions	MS and Your Emotions Not relevant	MS and Your Emotions Somewhat relevant	MS and Your Emotions Quite relevant	MS and Your Emotions Very relevant
MS and Your Bladder and Bowel	MS and Your Bladder and Bowel Not relevant	MS and Your Bladder and Bowel Somewhat relevant	MS and Your Bladder and Bowel Quite relevant	MS and Your Bladder and Bowel Very relevant
MS and Visual Problems	MS and Visual Problems Not relevant	MS and Visual Problems Somewhat relevant	MS and Visual Problems Quite relevant	MS and Visual Problems Very relevant
MS and Spasticity	MS and Spasticity Not relevant	MS and Spasticity Somewhat relevant	MS and Spasticity Quite relevant	MS and Spasticity Very relevant
MS and Sexuality and Intimacy	MS and Sexuality and Intimacy Not relevant	MS and Sexuality and Intimacy Somewhat relevant	MS and Sexuality and Intimacy Quite relevant	MS and Sexuality and Intimacy Very relevant
MS and Speech and Swallowing	MS and Speech and Swallowing Not relevant	MS and Speech and Swallowing Somewhat relevant	MS and Speech and Swallowing Quite relevant	MS and Speech and Swallowing Very relevant
MS and Pain	MS and Pain Not relevant	MS and Pain Somewhat relevant	MS and Pain Quite relevant	MS and Pain Very relevant
MS and Changes to Thinking and Memory	MS and Changes to Thinking and Memory Not relevant	MS and Changes to Thinking and Memory Somewhat relevant	MS and Changes to Thinking and Memory Quite relevant	MS and Changes to Thinking and Memory Very relevant

Question Title

* 4. These topics covered by our 'Knowledge is Power' series are listed below. Please grade each on how relevant the subject is to you.

	Not relevant	Somewhat relevant	Quite Relevant	Very relevant
Dealing with your diagnosis	Dealing with your diagnosis Not relevant	Dealing with your diagnosis Somewhat relevant	Dealing with your diagnosis Quite Relevant	Dealing with your diagnosis Very relevant
Disclosing your diagnosis	Disclosing your diagnosis Not relevant	Disclosing your diagnosis Somewhat relevant	Disclosing your diagnosis Quite Relevant	Disclosing your diagnosis Very relevant
Managing your MS	Managing your MS Not relevant	Managing your MS Somewhat relevant	Managing your MS Quite Relevant	Managing your MS Very relevant
Disease modifying drugs for MS	Disease modifying drugs for MS Not relevant	Disease modifying drugs for MS Somewhat relevant	Disease modifying drugs for MS Quite Relevant	Disease modifying drugs for MS Very relevant
Working with your doctor	Working with your doctor Not relevant	Working with your doctor Somewhat relevant	Working with your doctor Quite Relevant	Working with your doctor Very relevant
The impact of MS on your family	The impact of MS on your family Not relevant	The impact of MS on your family Somewhat relevant	The impact of MS on your family Quite Relevant	The impact of MS on your family Very relevant
Maximising your employment options	Maximising your employment options Not relevant	Maximising your employment options Somewhat relevant	Maximising your employment options Quite Relevant	Maximising your employment options Very relevant
Building and maintaining intimate relationships	Building and maintaining intimate relationships Not relevant	Building and maintaining intimate relationships Somewhat relevant	Building and maintaining intimate relationships Quite Relevant	Building and maintaining intimate relationships Very relevant
Parenting issues for people with MS	Parenting issues for people with MS Not relevant	Parenting issues for people with MS Somewhat relevant	Parenting issues for people with MS Quite Relevant	Parenting issues for people with MS Very relevant

Question Title

* 5. Are there any topics you feel are not covered in the above, but would be useful to you?

Question Title

* 6. Thinking back to the symptoms you were experiencing prior to being diagnosed, what information would have been useful to you then?

Question Title

* 7. After diagnosis, what were the first questions you wanted answers to?

Question Title

* 8. Select the resources that would have been useful for you to receive in a 'Newly Diagnosed Pack', and please add any other things that would have been useful under 'other'.

Beginner’s Guide to Multiple Sclerosis

The Facts about Multiple Sclerosis leaflet

A 'Knowledge is Power' information leaflet and opt-in form

A letter from MSNZ with contact details for your local Regional MS Society

Other (please specify)

Question Title

* 9. People differ in terms of how much information they would like to receive when they're first diagnosed with MS. From your perspective, would you prefer to receive all information relevant to you straight after diagnosis, or to start with the basics and request further information over time?

Start with the basics

Receive more than the basics, but not too much

All information that's relevant to me

Other (please specify)

Question Title

* 10. If you have been diagnosed for some time, what information are you now looking for? You can select more than one answer.

Information about managing symptoms

Information about MS progression

Information about living with MS

Information to share with others about MS

Information about treatment

Other (please specify)

Question Title

* 11. Would you find it more useful to read the information yourself, or to be guided through it by your Regional Community Support Worker (Field Worker)?

By myself

With a support worker

By myself with the opportunity to ask questions at a later date

Other (please specify)

Question Title

* 12. In general, do you find the information provided by MSNZ provides:

Not enough detail

The right amount of detail

Too much detail

I haven't used any MSNZ resources

Other (please specify)

Question Title

* 13. How often to you refer to the MSNZ website?

Every time I have a question about MS

Regularly

Sometimes

Never

Question Title

* 14. What could we change about the MSNZ website to make it more useful for you?

Question Title

* 15. Aside from MSNZ or your Regional MS Society, where do you get information about MS from?

Question Title

* 16. Are there any questions about MS you've struggled to find reliable answers to?

Question Title

* 17. Some people record information to take to their doctor - like symptom diaries, or a list of questions to ask. Would it be helpful for MSNZ to provide a resource for this? If so, what might help you?

Question Title

* 18. Some topics can be hard to discuss, like sex and MS. Are there any questions about MS you'd like answers to, but find too embarrassing or personal to ask?

Question Title

* 19. If you needed information on a 'taboo topic', what would be your preferred way of receiving it?

I feel comfortable asking my support worker

I'd like print resources I can read by myself

I'd like to download resources from the internet to read

I'd like to read the information on the MSNZ website

I'd like to watch videos of others with MS talking about their experiences

Other (please specify)

Question Title

* 20. How would you prefer to receive MS information? You can pick multiple options.

Have a hard copy I can keep and refer back to

Read it online

Download, save or print information from websites

Online with text-to-speak software

Other (please specify)

Question Title

* 21. Would it be useful to watch videos and listen to audio as well as read information about MS?

Yes

Other (please specify)

Question Title

* 22. Would it be useful to have booklets created specifically for spouses, children of parents with MS, carers, or employers, etc?

Yes

Other (please specify)

Question Title

* 23. Can you think of anyone else you'd like to give information to? Think broadly - this could be anyone you interact with.

Question Title

* 24. There are benefits to hearing stories from others with MS. Are there any specific experiences you would like to read about?

Question Title

* 25. Would you be interested in sharing your experiences of life with MS in our new information booklets? If so, please provide your contact details below:

Name

Email Address

Phone Number

Resource Questionnaire - People with MS

Question Title

* 1. When was the last time you read or referred to one of the MSNZ resources listed above?

Question Title

* 2. If you haven't used any MSNZ resources, why not?

Question Title

* 3. The topics currently offered by our information booklets are listed below. Please grade each on how relevant the subject is to you.

Question Title

* 4. These topics covered by our 'Knowledge is Power' series are listed below. Please grade each on how relevant the subject is to you.

Question Title

* 5. Are there any topics you feel are not covered in the above, but would be useful to you?

Question Title

* 6. Thinking back to the symptoms you were experiencing prior to being diagnosed, what information would have been useful to you then?

Question Title

* 7. After diagnosis, what were the first questions you wanted answers to?

Question Title

* 8. Select the resources that would have been useful for you to receive in a 'Newly Diagnosed Pack', and please add any other things that would have been useful under 'other'.

Question Title

* 9. People differ in terms of how much information they would like to receive when they're first diagnosed with MS. From your perspective, would you prefer to receive all information relevant to you straight after diagnosis, or to start with the basics and request further information over time?

Question Title

* 10. If you have been diagnosed for some time, what information are you now looking for? You can select more than one answer.

Question Title

* 11. Would you find it more useful to read the information yourself, or to be guided through it by your Regional Community Support Worker (Field Worker)?

Question Title

* 12. In general, do you find the information provided by MSNZ provides:

Question Title

* 13. How often to you refer to the MSNZ website?

Question Title

* 14. What could we change about the MSNZ website to make it more useful for you?

Question Title

* 15. Aside from MSNZ or your Regional MS Society, where do you get information about MS from?

Question Title

* 16. Are there any questions about MS you've struggled to find reliable answers to?

Question Title

* 17. Some people record information to take to their doctor - like symptom diaries, or a list of questions to ask. Would it be helpful for MSNZ to provide a resource for this? If so, what might help you?

Question Title

* 18. Some topics can be hard to discuss, like sex and MS. Are there any questions about MS you'd like answers to, but find too embarrassing or personal to ask?

Question Title

* 19. If you needed information on a 'taboo topic', what would be your preferred way of receiving it?

Question Title

* 20. How would you prefer to receive MS information? You can pick multiple options.

Question Title

* 21. Would it be useful to watch videos and listen to audio as well as read information about MS?

Question Title

* 22. Would it be useful to have booklets created specifically for spouses, children of parents with MS, carers, or employers, etc?

Question Title

* 23. Can you think of anyone else you'd like to give information to? Think broadly - this could be anyone you interact with.

Question Title

* 24. There are benefits to hearing stories from others with MS. Are there any specific experiences you would like to read about?

Question Title

* 25. Would you be interested in sharing your experiences of life with MS in our new information booklets? If so, please provide your contact details below:

Question Title

* 26. Is there anything else you would like to share with us about your experience with the MSNZ resources?

Question Title

* 27. Do you have any comments that were not covered in the sections above?