Form 1 Survey Screenshots
Generic Clearance for the Collection of Qualitative Feedback on Agency Service Delivery (NINR)
Appendix A Feedback Instrument
Family Support for Children with Serious Illnesses
OMB: 0925-0653
Appendix A OMB# 0925-0653
Feedback instrument Exp.Date 03/2015
Public reporting burden for this collection of information is estimated to average 10 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 currently 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 20892-7974, ATTN: PRA (0925-0653). Do not return the completed form to this address.
Survey Title
NINR Survey: Family Support for Children with Serious Illnesses
Survey Introductory Paragraph
The National Institute of Nursing Research (NINR), part of the National Institutes of Health, made this survey to ask for feedback from families and caregivers of children with serious illnesses. Dealing with an illness can be hard for the entire family, and palliative care is an important source of support for everyone. NINR developed the Palliative Care: Conversations Matter® campaign so that more families can learn about and use palliative care. Before creating new materials for families, we would like to hear from you.
This survey does not collect or save any identifying information, so your answers are anonymous. It should take 10 minutes or less to complete. Please skip any question you do not wish to answer.
Thank you in advance for your help. Your feedback is very important to us and will help us make sure more families get the comfort and support they deserve.
If you would like to learn more about NINR or the campaign, please go to http://www.ninr.nih.gov/conversationsmatter.
Please tell us your relationship to the child with a serious illness.
Parent or guardian
Sibling
Other family member
Caregiver (not a relative)
How old was the child when you learned he or she had a serious illness?
Younger than 1
1-4
5-9
10-14
15-17
18 or older
If you have received palliative care, how did you first hear about it?
From a health care provider
A friend or family member
Chaplain or spiritual leader
Social worker
Internet search or website
Support group or online group
Other: _________________________
I have not received palliative care
Below are some of the general ways palliative care can help families. Please rate them based on how important they are to your family.
Very important
Important
Somewhat important
Not very important
Not sure or no opinion
Taking care of my child’s symptoms
o
o
o
o
o
Getting support for the rest of my family
o
o
o
o
o
Finding care that respects my values and beliefs
o
o
o
o
o
Getting help understanding medical information
o
o
o
o
o
Having extra support to go along with regular care and treatments
o
o
o
o
o
Finding out about other types of care like art or music therapy
o
o
o
o
o
Receiving care in my home
o
o
o
o
o
Having a team of providers focused on my child
o
o
o
o
o
Improving communication with doctors
o
o
o
o
o
Below are some specific ways palliative care can support families. Please tell us how helpful each would have been when you first learned about the serious illness.
Very helpful
Helpful
Somewhat helpful
Not very helpful
Not sure or no opinion
Someone to listen to my concerns, feelings, and questions
o
o
o
o
o
Someone to help with communicating with all our doctors
o
o
o
o
o
Someone who could respectfully help our family make decisions together
o
o
o
o
o
Playtime and companionship for my child
o
o
o
o
o
Pain and symptom relief for my child
o
o
o
o
o
Someone to help my other child(ren) feel supported
o
o
o
o
o
People to help make sure my child was still getting a chance to be a kid
o
o
o
o
o
Someone to help us make sense of all the information
o
o
o
o
o
What are three things you wish you had known right away about caring for a child with a serious illness? An example might be, “knowing what questions to ask the doctors.”
______________________________________________________
______________________________________________________
______________________________________________________
Check the top three ways you get health information for your family.
Health care providers
Family and friends
Print materials like books and brochures
Community or hospital bulletin boards
Internet search or websites
Chat rooms, message boards, or online support groups
Social media like Facebook, Twitter, or YouTube
TV, radio, or newspaper
Other: ___________________________________
How do you usually share health information with others?
I tell them about it (by phone, in person, etc.)
I text or email information like articles and websites
Chat rooms, message boards, or online support groups
I share through social media
Other: ____________________________________
I do not usually share resources I find
Please use the chart below to tell us what materials would help families most.
-
Very helpful
Helpful
Somewhat helpful
Not very helpful
Not sure or no opinion
Information kit with palliative care basics
o
o
o
o
o
Stories from other families living with a serious illness
o
o
o
o
o
Video how-to guides about palliative care
o
o
o
o
o
Podcast series with information or stories
o
o
o
o
o
Facebook page or other social media with information and updates
o
o
o
o
o
Printed materials like fact sheets and resource lists
o
o
o
o
o
Online or mobile app with quick tips and resources
o
o
o
o
o
Connecting with other families to share experiences
o
o
o
o
o
If there is something not listed above that you think would be helpful, please tell us here.
________________________________________
| File Type | application/vnd.openxmlformats-officedocument.wordprocessingml.document |
| Author | Christine Edgar |
| File Modified | 0000-00-00 |
| File Created | 2021-01-31 |
© 2024 OMB.report | Privacy Policy