Practice recommendations regarding parental presence in NICUs during pandemics caused by respiratory pathogens like COVID-19

Aim To co-create parental presence practice recommendations across Canadian NICUs during pandemics caused by respiratory pathogens such as COVID-19. Methods Recommendations were developed through evidence, context, Delphi and Values and Preferences methods. For Delphi 1 and 2, participants rated 50 items and 20 items respectively on a scale from 1 (very low importance) to 5 (very high). To determine consensus, evidence and context of benefits and harms were presented and discussed within the Values and Preference framework for the top-ranked items. An agreement of 80% or more was deemed consensus. Results After two Delphi rounds (n = 59 participants), 13 recommendations with the highest rated importance were identified. Consensus recommendations included 6 strong recommendations (parents as essential caregivers, providing skin-to-skin contact, direct or mothers' own expressed milk feeding, attending medical rounds, mental health and psychosocial services access, and inclusion of parent partners in pandemic response planning) and 7 conditional recommendations (providing hands-on care tasks, providing touch, two parents present at the same time, food and drink access, use of communication devices, and in-person access to medical rounds and mental health and psychosocial services). Conclusion These recommendations can guide institutions in developing strategies for parental presence during pandemics caused by respiratory pathogens like COVID-19


Introduction and purpose
You are being invited to participate in co-creating national recommendations about parental presence restrictions during the COVID-19 pandemic across Canadian Neonatal Intensive Care Units (NICU)s.

How will the researchers do the study?
We are asking stakeholders from across Canada to complete an online survey.

What will I be asked to do?
Participating in this study involves completing an online survey (approximately 15-20 minutes).Within the Delphi (Round 1) survey, there are broader categories and individual items within those categories of potential national recommendations for pandemic management and post-pandemic policy related to parental presence across Canadian NICUs.You will be asked to rate each category and individual item (within those categories) on a scale of importance to include in the national practice recommendations, from 1 (very low importance) to 5 (very high importance).You will also be asked if you wish to continue participating in building national recommendations.This includes the second round of the Delphi (Round 2) survey, and by attending collaborative meetings with a group of stakeholders including parent partners, researchers, hospital leaders, policymakers, and decision-makers.

Potential benefits
There are no direct benefits to you for participation in the study.Indirectly, we will use the results of this study to try to inform a national approach to family presence in the NICU in response to the COVID-19 pandemic, and if necessary, any pandemics in the future, as well as inform a national approach during a post pandemic recovery.

Potential harms and burdens
Participating in this study will not affect your healthcare or job position at your hospital in any way, if applicable.Only the researchers will have access to this data and every effort will be made to ensure that the information you provided remains confidential.

What alternatives to participating do I have?
You do not have to participate in this study.Your participation in this study is entirely voluntary (your choice).

Can I withdraw from the study?
You can withdraw from the study at any time by simply closing the link and no responses will be recorded.We will only see the responses of people who hit "submit".Because the results are anonymous once you have submitted your responses you will not be able to withdraw them from the study.Withdrawal will not affect your healthcare or job position at the hospital in any way, if applicable.

Costs and reimbursements
There are no costs associated with participating in this study.Your answers to the survey will not be linked with your identifying information.

Are there any conflicts of interest?
None of the researchers or site investigators have any conflicts of interest or financial interest in the study results.There are no business interests involved.

What about possible profit from the commercialization of the study results?
There are no possible profits from the commercialization of study results.

How will my privacy be protected?
Information shared while participating in this study will be kept private.Your responses will be assigned an ID number and saved to a file that will not include any identifying information.We will store your email address, if you choose to provide it to take part in future surveys and consensus-building, separately from your survey responses, ensuring that your personal information (email address) is not linked to your responses in any way.All attempts at maintaining confidentiality will be taken.No individualized results will be reported.Responses to the online survey are collected using REDCap survey software and are stored on a protected server at IWK Health.Study documents are stored at the Centre for Pediatric Pain Research at IWK Health.Only research staff and the IWK Health Research Ethics Board will be able to access study information.Study data will be kept for a minimum of 5 years following publication.

What are my research rights?
If you are interested in participating, please click the 'Submit' button.If you are not interested in participating, simply exit the survey.Completion of the survey indicates that you have agreed to take part in this research and for your responses to be used.In no way does this waive your legal rights or release the investigators, sponsors, or involved in situations from their legal and professional responsibilities.If you have any questions at any time during or after the study about research in general, you may contact the Research Office of IWK Health at (902) 470-7989, Monday to Friday between 8:00am and 4:00pm (AST).

How will I be informed of study results?
A summary of the results will be posted on our website (www.mom-linc.ca)upon study completion.

What if I have study questions or problems?
Please contact Dr. Marsha Campbell-Yeo (marsha.campbell-yeo@dal.ca).

Consent to participate
By clicking "Submit" below on to the survey, you are acknowledging that you have read the letter of information and consent to participate.

[Submit] BASIC DEMOGRAPHIC INFORMATION
In this section, we will ask you a few basic demographic questions so we can see the general characteristics of what our study participants are like.Please note that your identity will not be connected with any of these answers, and all answers will be kept strictly confidential.No one will be able to identify you (or your infant, if applicable

SURVEY INSTRUCTIONS
Thank you for participating in this Delphi (Round 1) survey!It contains 6 overarching categories and 5 -13 individual items within each of those 6 categories.These categories and items represent important, potential national recommendations specifically related to the COVID-19 pandemic in the NICU.Although all categories and items have importance with respect to the COVID-19 pandemic in the NICU, we ask that you are deliberate in rating them, considering that not everything will be able to be included in the final national recommendations.This process is meant to narrow the list down to the categories and items of the highest importance. First: You will be asked to rate the 6 overarching categories of practice recommendations, according to your opinion on the importance of including each category in national recommendations for ongoing pandemic management and post-pandemic policies.You will rate each category on a scale from 1 (very low importance) to 5 (very high importance).You will have the chance to suggest additional categories or alternative wording of any existing category if you wish to do so.

Second:
Each category contains 5 -13 individual items.You will rate each individual item within each category.
Similarly, you will rate each item according to your opinion on the importance of including each item in national recommendations for ongoing pandemic management and post-pandemic policies.You will rate each item on a scale from 1 (very low importance) to 5 (very high importance).You will have the chance to suggest additional items or alternative wording of any existing items listed if you wish to do so.
At the end of the survey, we will ask if you wish to continue participating in the consensus-building.If you are, you will be able to submit your email address for the research team to contact you.

CATEGORIES
Please rate each of the following 6 categories of important topics related to COVID-19 in the NICU according to their importance for discussion of inclusion in the national recommendations for ongoing pandemic management and post-pandemic policies:

Various different stakeholders are participating in this survey. Please indicate if you belong to any of the following stakeholder groups:
).

Please specify the NICU that you work in
: [Text box]

for discussion of inclusion in the national recommendations for ongoing pandemic management and post-pandemic policies.
Please rate each of the following items of potential national recommendations related to COVID-19 in the NICU falling under the category of 'COVID-19 Screening' according to their importance

Category of 'Parent(s), Family Member(s), and Support Person(s) in the NICU During Pandemic'
Please rate each of the following items of potential national recommendations related to COVID-19 in the NICU falling under the category of 'Parent(s), Family Member(s), and Support Person(s) in the NICU' according to their importance

Category of 'Parent(s) Physical Needs and Well-being During Pandemic'
Please rate each of the following items of potential national related to COVID-19 in the NICU falling under the category of 'Parent(s) Physical Needs and Well-being' according to their importance

Category of 'Parent(s), Family Member(s), and Support Person(s) Engaging in Infant Care During Pandemic'
Please rate each of the following items of potential national recommendations related to COVID-19 in the NICU falling under the category of 'Parent(s), Family Member(s), and Support Person(s) Engaging in Infant Care' according to their importance

Category of 'Communication and Education During Pandemic'
Please rate each of the following items of potential national recommendations related to COVID-19 in the NICU falling under the category of 'Communication and Education' according to their importance

for discussion of inclusion in the national recommendations for ongoing pandemic management and post-pandemic policies.
Please rate each of the following items of potential national recommendations related to COVID-19 in the NICU falling under the category of 'Infection Control' according to their importance

for discussion of inclusion in the national recommendations for ongoing pandemic management and post-pandemic policies.
Thank you for your participation in this studyAre you interested in participating in any of the next steps of building national recommendations?They include:1.Ranking the top 20 items discovered by this survey, using the same format as this survey 2. Participating in meetings to determine the final national recommendations with a group of stakeholders Please provide your email address:[Text box]If you would like to communicate with the study team, please contact: Dr. Marsha Campbell-Yeo at marsha.