Resource Questionnaire - Carers, Family and Friends

We are creating new resources for people with MS and their supporters, 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. Do you use MSNZ resources to:

Provide information to the person with MS I'm supporting

Learn about MS myself

Both

I haven't used MSNZ resources

Other (please specify)

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* 2. 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

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* 3. 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 information provided by MSNZ isn't engaging

I prefer not to read about MS

Other (please specify)

Question Title

* 4. These are the topic currently offered by our information booklets. Please grade them on how relevant each topic is to you and the person with MS you care for.

	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

* 5. These are the topics covered by our 'Knowledge is Power' series. Please grade each on how relevant it is to you and to the person with MS you care for.

	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

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* 6. Are there any topics that aren't covered in either of the above questions, but are important to you?

Question Title

* 7. 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)

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* 8. Are there any questions about MS, or about supporting someone with MS, that you've struggled to find answers to?

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

Often

Regularly

Sometimes

Never

Other (please specify)

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

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* 11. Aside from MSNZ or your Regional MS Society, where do you get information about MS, or about caring for someone with MS?

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* 12. If we were to prepare a booklet specifically for carers, and one for family and friends of people with MS, what topics would you like to see covered?

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* 13. Would you like to read about the experiences of other MS carers?

Yes

Other (please specify)

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* 14. Would you be open to sharing your experience? If so, provide your contact details below, and someone from the MS Society will be in touch.

Name

Email Address

Phone Number

Resource Questionnaire - Carers, Family and Friends

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* 1. Do you use MSNZ resources to:

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

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

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* 4. These are the topic currently offered by our information booklets. Please grade them on how relevant each topic is to you and the person with MS you care for.

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* 5. These are the topics covered by our 'Knowledge is Power' series. Please grade each on how relevant it is to you and to the person with MS you care for.

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* 6. Are there any topics that aren't covered in either of the above questions, but are important to you?

Question Title

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

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* 8. Are there any questions about MS, or about supporting someone with MS, that you've struggled to find answers to?

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

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

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* 11. Aside from MSNZ or your Regional MS Society, where do you get information about MS, or about caring for someone with MS?

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* 12. If we were to prepare a booklet specifically for carers, and one for family and friends of people with MS, what topics would you like to see covered?

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* 13. Would you like to read about the experiences of other MS carers?

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* 14. Would you be open to sharing your experience? If so, provide your contact details below, and someone from the MS Society will be in touch.

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* 15. Is there anything else you'd like to share with us about your experience with the MSNZ resources, or about caring for someone with MS?