Form 1 NLM 4 Caregivers 2016 User Survey Instrument

NLM 4 Caregivers 2016 User Survey
Introduction

OMB Control Number: 09250648
Expiration Date: 03/31/2018
Public reporting burden for this collection of information is estimated to average 5 minutes per response, including the time
for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and
reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to, a
collection of information unless it displays a current valid OMB control number. Send comments regarding this burden
estimate or any other aspect of this collection of information, including suggestions for reducing this burden, to NIH, Project
clearance Branch, 6705 Rockledge Drive, MSC 7974, Bethesda, MD 208927974, ATTN: PRA (09250648). Do not return the
completed form to this address.

Survey Overview: Family caregivers provide care across the life span, whether caring for a child, a person with a special
medical need or a family member at the end of life. Many family caregivers provide constant “on call” care for their loved
one, which can be very stressful. The purpose of this survey is to identify the kinds of health information most needed by
family caregivers and the best ways to share this information. We will use the results from this survey to enhance our
understanding of the information needs of family caregivers.

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NLM 4 Caregivers 2016 User Survey

1. Are you currently a family caregiver?
Yes
No

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NLM 4 Caregivers 2016 User Survey

2. How do you most often access health information in your role as a
caregiver? (Select one answer.)
Google to locate health websites
Social media (blogs, Twitter, Facebook, online support groups)
Books and print publications
In person classes or online courses
Ask friends and family
Ask a doctor or other healthcare professional
Unsure

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3. What are your biggest obstacles to finding reliable health information?
(Select all that apply.)
Lack of time
Cost to access information
Not knowing where reliable health information can be found
Other (please specify)

4. What health topics do you need more reliable information on to help
you in your role as a family caregiver? (Select all that apply.)
Basic information on specific health conditions and diseases (like Alzheimer’s, Parkinson’s, cancer, diabetes, etc.)
Parenting and infant/child health
Day-to-day care and symptom management for chronic/long-term illness
End-of-life care (hospice and palliative care)
Medication and medication management
Guidance on long-distance caregiving
Economic assistance resources for healthcare costs
Self-care information for caregivers (for improving one’s own mental, physical and emotional health)
How technology can be used to assist caregivers
How to locate clinical trials
Other (please specify)

5. Are you aware of National Library of Medicine health information
resources?
Yes
No

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NLM 4 Caregivers 2016 User Survey

6. How are you familiar with the health information needs of family
caregivers? (Select one answer.)
I work with an organization or company that provides services to family caregivers
I have a close friend or family member who is a caregiver
I work with family caregivers and have a close friend or family member who is a caregiver
I do not know or work with any family caregivers

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NLM 4 Caregivers 2016 User Survey

7. If yes, which National Library of Medicine resources do you most
often use: (Select all that apply.)
ClinicalTrials.gov (to locate clinical trials to participate in)
Drug Information Portal (to locate information on drugs and supplements)
Household Products Database (to identify the health effects of household products)
MedlinePlus (to locate information on health topics, drugs and supplements)
NIH Senior Health (to locate information on health topics for older adults)
Pillbox (to identify unknown pills and tablets)
PubMed (to find biomedical literature)
Other (please specify)

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NLM 4 Caregivers 2016 User Survey

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8. The National Library (NLM) of Medicine provides free online access to
a number of health information resources. Please read the following
descriptions and mark whether you are interested in learning more
about these resources: (Select Yes/No)
ClinicalTrials.gov – Search across over 200,000 studies in 50
states and over 190 countries
Drug Information Portal – Search for information available on over
68,000 drugs and supplements
Household Products Database – Find the health effects for over
16,000 common household products
MedlinePlus – Find information and links on health topics, drugs
and supplements
NIH Senior Health – Health topics, exercise stories, and health
topics for older adults
Pillbox – Use images to search for and identify unknown pills
PubMed –Database of millions of citations from biomedical and life
sciences journals and online books
Yes
No

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NLM 4 Caregivers 2016 User Survey

Thank you for taking this survey by the National Library of Medicine, Outreach and Special Populations Branch.
The National Library (NLM) of Medicine provides free online access to a number of health information resources for the
general public, such as:
ClinicalTrials.gov – Search across over 200,000 studies in 50 states and over 190 countries
Drug Information Portal – Search for information available on over 68,000 drugs and supplements
Household Products Database – Find the health effects for over 16,000 common household products
MedlinePlus – Find information and links on health topics, drugs and supplements
NIH Senior Health – Health topics, exercise stories, and health topics for older adults
Pillbox – Use images to search for and identify unknown pills
PubMed – Database of millions of citations from biomedical literature and life sciences journals and online books

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NLM 4 Caregivers 2016 User Survey

9. How do the family caregivers you know most often access health
information? (Select one answer.)
Google to locate health websites
Social media (blogs, Twitter, Facebook, online support groups)
Books and print publications
In person classes or online courses
Ask friends and family
Ask a doctor or other healthcare professional
Unsure

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10. What are the biggest obstacles to finding reliable health information
for the family caregivers you know? (Select all that apply.)
Lack of time
Cost to access information
Not knowing where reliable health information can be found
Unsure
Other (please specify)

11. What health topics do the family caregivers you know need more
reliable information on to help them in their roles as a family caregivers?
(Select all that apply.)
Basic information on specific health conditions and diseases (like Alzheimer’s, Parkinson’s, cancer, diabetes, etc.)
Parenting and infant/child health
Day-to-day care and symptom management for chronic/long-term illness
End-of-life care (hospice and palliative care)
Medication and medication management
Guidance on long-distance caregiving
Economic assistance resources for healthcare costs
Self-care information for caregivers (for improving one’s own mental, physical and emotional health)
How technology can be used to assist caregivers
How to locate clinical trials
Other (please specify)

12. Are the family caregivers in your life aware of National Library of
Medicine health information resources?
Yes
No
Unsure

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NLM 4 Caregivers 2016 User Survey

13. If yes, which National Library of Medicine resources do the
caregivers in your life most often use: (Select all that apply.)
ClinicalTrials.gov (to locate clinical trials to participate in)
Drug Information Portal (to locate information on drugs and supplements)
Household Products Database (to identify the health effects of household products)
MedlinePlus (to locate information on health topics, drugs and supplements)
NIH Senior Health (to locate information on health topics for older adults)
Pillbox (to identify unknown pills and tablets)
PubMed (to find biomedical literature)
Other (please specify)

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NLM 4 Caregivers 2016 User Survey

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14. The National Library (NLM) of Medicine provides free online access
to a number of health information resources. Please read the following
descriptions and mark whether you are interested in learning more
about these resources: (Select Yes/ No)
ClinicalTrials.gov – Search across over 200,000 studies in 50
states and over 190 countries
Drug Information Portal – Search for information available on over
68,000 drugs and supplements
Household Products Database – Find the health effects for over
16,000 common household products
MedlinePlus – Find information and links on health topics, drugs
and supplements
NIH Senior Health – Health topics, exercise stories, and health
topics for older adults
Pillbox – Use images to search for and identify unknown pills
PubMed – Database of millions of citations from biomedical and life
sciences journals and online books
Yes
No

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NLM 4 Caregivers 2016 User Survey
End of
Survey

Thank you for taking this survey by the National Library of Medicine, Outreach and Special Populations Branch.

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