Form 1 PRE AND POST SURVEYS

ATTACHMENT 2: PRE and POST SURVEYS - SCREENSHOTS

BASELINE SURVEY
National Institute of Nursing Research (NINR)
Palliative Care: Conversations Matter Evaluation
OMB #: xxxx-xxxx Expiration Date: xx/xx/xxx
Public reporting burden for this collection of information is estimated to average 20 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 (xxxx-xxxx). Do not
return the completed form to this address.
CONSENT FOR PARTICIPATION
Before you take the questionnaire today, we need to ask you to formally consent to participate. Please carefully read the
following statements and check the box below acknowledging that you understand each statement and agree to participate in
the two waves of the questionnaire that will be administered over the next 12 months.
a. I understand that my participation is voluntary. I can choose not to answer questions and I can withdraw from the
questionnaires at any point.
b. I understand that all information collected in the questionnaires is secure to the extent permitted by law, and will not be
disclosed to anyone but the researchers conducting this study, except as otherwise required by law. All findings will be
reported in aggregate.
c. I will not be asked any personally identifying information when responding to the questionnaires. My personal identity will
be protected. A transcript of the questionnaires will be stored securely and will only be accessible to the research team. No
one will be identified in reports resulting from these questionnaires.
NINR is authorized to conduct the following questionnaires under section 42USC 285q of U.S. Law.
If you have questions about the questionnaires or your participation, please contact Adrienne Burroughs by email at
adrienne.burroughs@nih.gov or by phone at 301-496-0256.
I am at least 18 years old.
Yes
No
By selecting "I Accept," I acknowledge and accept the consent statement and agree to participate in both questionnaires.
Accept
I Do Not Accept
Please note: No survey responses are saved until you hit the "submit" button at the end of the survey. Therefore, please try to
complete the survey in one sitting. If you use the "Back" button, you will lose previous answers. For open ended questions,
please do not enter any personally identifying information. To read NINR's privacy policy, click here.

Continue

1

BASELINE SURVEY
1. Which state do you work in?

AK
2. Which of the following best describes your position?
Primary care physician
Specialist physician
Registered nurse
Nurse practitioner
Clinical nurse specialist
Other (please specify)
3. Which of the following best describes your area of specialty? (Select all that apply)
Oncology
Pediatrics
Primary Care (general medicine, internist, family medicine)
Surgery
Other (please specify):

4. How often do you work with pediatric patients?
Daily
A few times a week
Once a week
A few times a month
Once a month
Less than once a month
Never
5. What percentage of your patient base is pediatric?
100%
76-99%
51-75%
26-50%
1-25%
0%
6. Have you received special training or a certification in pediatric palliative care?
Yes, training
Yes, certification
No, neither training nor certification
7. Does the setting in which you currently work offer any palliative care services for the pediatric population?
Yes
No
Not sure
8. For how many years have you been caring for pediatric patients living with serious illnesses or life-limiting
conditions?
Less than 1 year
1-2 years
3-5 years
6-10 years
More than 10 years
I don't treat pediatric patients living with serious illnesses or life-limiting conditions
9. Which of the following components, if any, do you believe palliative care includes? (Select all that apply)
Pain management
Counseling
Symptom management
Spiritual support
Social work services
Other (please specify)

None of these

For the rest of the survey, please think back about your experiences over the last six months.

10. With which of the following people, if any, do you typically discuss palliative care for a pediatric patient? (Select
all that apply)
Patient
Parent or caregiver
Sibling
Other family member
Registered Nurse
Nurse Practitioner/Clinical Nurse Specialist
Other health care practitioners
Other members of the multi-disciplinary team (e.g., social workers, chaplain, etc.)
Other (please specify)

None of these
11. How prepared do you feel discussing palliative care with pediatric patients and their families?
Extremely prepared
Very prepared
Somewhat prepared
Not very prepared
Not at all prepared

Continue

2

BASELINE SURVEY
12. At what stage in a pediatric patient's treatment would you initiate the palliative care conversation with patients
and their families?
Immediately after the diagnosis
Early in the treatment process
After a number of treatments are unsuccessful
When no other life-prolonging treatments are available
Other (please specify)

Not sure

13. To what extent do you agree or disagree with each of the following statements.
Strongly
agree

Somewhat
agree

Somewhat
disagree

Don't
know

Strongly
disagree

a. Palliative care is only appropriate for my pediatric patients at the
end of life.
b. I rarely think about palliative care when treating my pediatric
patients who have a serious illness or life-limiting condition that is not
necessarily terminal.
c. A child's viewpoint should be included as much as that child can
understand and give opinions.
d. There is no difference between pediatric palliative care and end-oflife care for children.
e. I rarely am the one to initiate the conversation about palliative care
with my pediatric patients and their families.
f. Pediatric palliative care can be delivered concurrently with lifeprolonging care.
g. Palliative care can enhance my pediatric patients' quality of life.

14. Which of the following, if any, do you believe are the benefits of palliative care for pediatric patients and their
families? (Select all that apply)
Builds families’ trust and confidence in health care providers’ recommendations for their child’s treatment and care
Helps reduce the child’s pain throughout the course of the illness
Helps improve patient’s quality of life
Helps increase overall satisfaction with care
Provides support to patients and their families during a very difficult time
Reduces family stress
Helps to manage physical symptoms
Helps to manage emotional symptoms
Other (please specify)

None of these
15. To what extent do you agree or disagree with each of the following statements.
Strongly
agree

Somewhat
agree

Somewhat
disagree

Don't
know

Strongly
disagree

a. I have access to resources and tools to help start and manage
conversations about palliative care for my pediatric patients and their
families.
b. I find it difficult to determine when to initiate the conversation about
palliative care for my pediatric patients and their families.
c. I feel equipped with the necessary information to help parents and
families understand the benefits of palliative care for their child.

Continue

3

Thank you so much for completing this survey. Your feedback is very important to us.
If you have questions about the survey or your participation, please contact Adrienne Burroughs by email at
adrienne.burroughs@nih.gov or by phone at 301-496-0256.

4

POST-CAMPAIGN SURVEY
National Institute of Nursing Research (NINR)
Palliative Care: Conversations Matter Evaluation
OMB #: xxxx-xxxx Expiration Date: xx/xx/xxx
Public reporting burden for this collection of information is estimated to average 20 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 (xxxx-xxxx). Do not
return the completed form to this address.
CONSENT FOR PARTICIPATION
Before you take the questionnaire today, we need to ask you to formally consent to participate. Please carefully read the
following statements and check the box below acknowledging that you understand each statement and agree to participate in all
three waves of the questionnaire that will be administered every four to five months over the next 9 months.
a. I understand that my participation is voluntary. I can choose not to answer questions and I can withdraw from the
questionnaires at any point.
b. I understand that all information collected in the questionnaires is secure to the extent permitted by law, and will not be
disclosed to anyone but the researchers conducting this study, except as otherwise required by law. All findings will be
reported in aggregate.
c. I will not be asked any personally identifying information when responding to the questionnaires. My personal identity will
be protected. A transcript of the questionnaires will be stored securely and will only be accessible to the research team. No
one will be identified in reports resulting from these questionnaires.
NINR is authorized to conduct the following questionnaires under section 42USC 285q of U.S. Law.
If you have questions about the questionnaires or your participation, please contact Adrienne Burroughs by email at
adrienne.burroughs@nih.gov or by phone at 301-496-0256.
I am at least 18 years old.
Yes
No
By selecting "I Accept," I acknowledge and accept the consent statement and agree to participate in all three questionnaires.
Accept
I Do Not Accept
Please note: No survey responses are saved until you hit the "submit" button at the end of the survey. Therefore, please try to
complete the survey in one sitting. If you use the "Back" button, you will lose previous answers. For open ended questions,
please do not enter any personally identifying information. To read NINR's privacy policy, click here.

Continue

5

POST SURVEY
1. Which of the following components, if any, do you believe palliative care includes? (Select all that apply)
Pain management
Counseling
Symptom management
Spiritual support
Social work services
Other (please specify)

None of these
For the rest of the survey, please think back about your experiences over the last twelve (12) months, since the
Palliative Care: Conversations Matter campaign began

2. With which of the following people, if any, do you typically discuss palliative care for a pediatric patient? (Select all
that apply)
Patient
Parent or caregiver
Sibling
Other family member
Registered Nurse
Nurse Practitioner/Clinical Nurse Specialist
Other health care practitioners
Other members of the multi-disciplinary team (e.g., social workers, chaplain, etc.)
Other (please specify)

None of these
3. To what extent do you agree or disagree with each of the following statements.
Strongly
agree

Somewhat
agree

Somewhat
disagree

Don't
know

Strongly
disagree

a. Palliative care is only appropriate for my pediatric patients at the
end of life.
b. I rarely think about palliative care when treating my pediatric
patients who have a serious illness or life-limiting condition that is not
necessarily terminal.
c. A child's viewpoint should be included as much as that child can
understand and give opinions.
d. There is no difference between pediatric palliative care and end-oflife care for children.
e. I rarely am the one to initiate the conversation about palliative care
with my pediatric patients and their families.
f. Pediatric palliative care can be delivered concurrently with lifeprolonging care.
g. Palliative care can enhance my pediatric patients' quality of life.
4. Compared to twelve (12) months ago, how prepared do you feel to discuss pediatric palliative care with your
pediatric patients and their families?
Much more prepared
Somewhat more prepared
Neither more prepared nor less prepared
Somewhat less prepared
Much less prepared
5. At what stage in a pediatric patient's treatment would you initiate the palliative care conversation with patients and
their families?
Immediately after the diagnosis
Early in the treatment process
After a number of treatments are unsuccessful
When no other life-prolonging treatments are available
Other (please specify)

None of these
6. Which of the following, if any, do you believe are the benefits of palliative care for pediatric patients and their
families? (Select all that apply)
Builds families' trust and confidence in health care providers' recommendations for their child's treatment and care
Helps reduce the child's pain throughout the course of the illness
Helps improve patient's quality of life
Helps increase overall satisfaction with care
Provides support to patients and their families during a very difficult time
Reduces family stress
Helps to manage physical symptoms
Helps to manage emotional symptoms
Other (please specify)

None of these
7. To what extent do you agree or disagree with each of the following statements.
Strongly
agree

Somewhat
agree

Somewhat
disagree

Don't
know

Strongly
disagree

a. I have access to resources and tools to help start and manage
conversations about palliative care for my pediatric patients and their
families.
b. I find it difficult to determine when to initiate the conversation about
palliative care for my pediatric patients and their families.
c. I feel equipped with the necessary information to help parents and
families understand the benefits of palliative care for their child.

Continue

6

POST SURVEY
8. About which of the following topics did you learn from the campaign and its materials? (Select all that apply)
How to initiate difficult discussions
How to provide guidance and recommendations to pediatric patients with a serious illness or life-limiting condition and
their families
How to promote continued pediatric palliative care conversations
How to ensure pediatric patients with a serious illness or life-limiting condition and their families’ needs are understood
and followed throughout treatment
How to ensure you convey all of the necessary information/ recommendations
Other (please specify)

None of these
9. Since the campaign began, which components have you used in your work with pediatric patients and their
families navigating a serious illness or life-limiting condition? (Select all that apply)
Information from the video modules
Information from the interactive worksheet/ tear-off pad
General information you received in the workshop
Information from other health care providers participating in the workshop
Other (please specify)

None of these
10. Compared to twelve (12) months ago, has the amount of time that you spend discussing palliative care with your
pediatric patients and their families navigating a serious illness or life-limiting condition changed? It has…
Significantly increased
Somewhat increased
No change
Somewhat decreased
Significantly decreased
11. Compared to twelve (12) months ago, are you initiating conversations about palliative care with your pediatric
patients and their families who are navigating a serious illness or life-limiting condition earlier in the treatment
process?
Much earlier
Somewhat earlier
No difference
Somewhat later
Much later
12. How satisfied are you with the information that you received from the campaign materials?
Extremely satisfied
Very satisfied
Somewhat satisfied
Not very satisfied
Not at all satisfied
13. How have you used the information from the kick-off workshop and the campaign materials to treat your pediatric
patients with a serious illness or life-limiting condition?

14. Since attending the kick-off workshop, which, if any, of the following have you done?
Talked with other health care professionals about pediatric palliative care
Talked with other health care professionals about specific content from the workshop or materials
Recommended pediatric palliative care
Thought about actions you would take in relation to what you heard in the workshop
Changed the way you communicate with patients about pediatric palliative care
Changed the way you communicate with patients’ families about pediatric palliative care
Other (please specify)

None of these
15. Compared to twelve (12) months ago, how often have you referred or recommended your pediatric patients and
their families who are navigating a serious illness or potentially life-limiting condition to palliative care specialists
(e.g., physicians, nurses, psychiatrists, social workers, chaplains, etc.)?
Much more often
Somewhat more often
No change
Somewhat less often
Much less often
16. Compared to twelve (12) months ago, are you referring or recommending your pediatric patients and their
families who are navigating a serious illness or life-limiting condition to palliative care specialists (e.g., physicians,
nurses, psychiatrists, social workers, chaplains, etc.) earlier in the treatment process?
Much earlier
Somewhat earlier
No difference
Somewhat later
Much later
17. What aspects of the campaign materials did you find most beneficial? Please be as specific as possible.

18. What aspects of the campaign materials did you find least beneficial and how would you change them? Please be
as specific as possible.

19. What other tools or information do you need to help you discuss palliative care with your pediatric patients and
their families?

20. How likely are you to recommend the campaign materials to other health care providers in your field?
Extremely likely
Very likely
Somewhat likely
Not very likely
Not at all likely

Continue

7

Thank you so much for completing this survey. Your feedback is very important to us.
If you have questions about the survey or your participation, please contact Adrienne Burroughs by email at
adrienne.burroughs@nih.gov or by phone at 301-496-0256.

8