Attachment 7_PPC Informed Consent

Attachment 7: INFORMED CONSENT

Purpose of Survey and Consent

The National Institute of Nursing Research (NINR) at the National Institutes of Health is conducting this survey to get feedback on the pediatric palliative care campaign materials used in two pilot campaign sites, so that changes to the materials can be made as needed. All pilot campaign participants are being asked to complete the survey.

Public reporting burden for this collection of information is estimated to average 30 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-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 questionnaire.

1. I understand that my participation is voluntary. I can choose not to answer questions and I can withdraw from the questionnaire at any point.

2. I understand that all information collected in the questionnaire 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. The purpose of the survey is to provide feedback on the campaign materials used in two pilot campaign sites. All findings will be reported in aggregate.

3. I will not be asked any personally identifying information when responding to the questionnaire. My personal identity will be protected. A transcript of the questionnaire will be stored securely and will only be accessible to the research team. No one will be identified in reports resulting from the questionnaire.

NINR is authorized to conduct the following questionnaire under section 42USC 285q of U.S. Law.

If you have questions about the questionnaire 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.

1. Yes

2. No [Survey will terminate, if this response is selected.]

By selecting “I Accept,” I acknowledge and accept the consent statement.

1. Accept

2. I Do Not Accept [Survey will terminate, if this response is selected.]