Perspectives from designated family caregivers of critically ill adult patients during the COVID-19 pandemic: A qualitative interview study

Stephana J. Moss; Karla D. Krewulak; Henry T. Stelfox; Scott B. Patten; Christopher J. Doig; Jeanna Parsons Leigh; Kirsten M. Fiest

doi:10.1371/journal.pone.0275310

Peer Review History

Original SubmissionNovember 10, 2021
5 Apr 2022 Decision Letter - Marie-Pascale Pomey, Editor PONE-D-21-35872Perspectives from Designated Family Caregivers of Critically Ill Adult Patients During the COVID-19 Pandemic: A Qualitative Interview StudyPLOS ONE Dear Dr. Fiest, Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process. I encourage you to follow all the changes recommended by the two reviewers. Please submit your revised manuscript by April 15th. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org. 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We will update your Data Availability statement on your behalf to reflect the information you provide [Note: HTML markup is below. Please do not edit.] Reviewers' comments: Reviewer's Responses to Questions Comments to the Author 1. Is the manuscript technically sound, and do the data support the conclusions? The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented. Reviewer #1: No Reviewer #2: Partly ******** 2. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: N/A Reviewer #2: I Don't Know ****** 3. Have the authors made all data underlying the findings in their manuscript fully available? The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified. Reviewer #1: No Reviewer #2: Yes ****** 4. Is the manuscript presented in an intelligible fashion and written in standard English? PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here. Reviewer #1: Yes Reviewer #2: Yes ****** 5. Review Comments to the Author Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters) Reviewer #1: Overall Comments - This was an interesting and well written piece. However, more work is required, particularly at the level of description and interpretation of the results. See specific comments below. Reviewer #2: See comments in document. Need information about the main study. In general, The manuscript described a specific clinical event and social impact. It is a novelty in science. The small sample sizes gave some data to discuss but the conclusion needs to be adresses differently . Experiments seem to have been conducted rigorously, but details in need it in methodology and more information regarding the main research is need it. The conclusions must be drawn appropriately based on the data presented. ****** 6. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files. If you choose “no”, your identity will remain anonymous but your review may still be made public. Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy. Reviewer #1: Yes:** Bertrand Lebouché MD, PhD Associate Professor, Department of Family Medicine, Faculty of Medicine and Health Sciences, McGill University Anish K. Arora, PhD(c), MSc, BSc (Hons) PhD Candidate, Family Medicine & Primary Care, McGill University, Vanier Scholar, Canadian Institutes of Health Research Reviewer #2: No [NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.] While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org. Please note that Supporting Information files do not need this step. Attachments Attachment Submitted filename: PONE-D-21-35872.pdf https://doi.org/10.1371/journal.pone.0275310.r001
Revision 1
8 Sep 2022 Author Response September 8, 2022 Emily Chenette, PhD Editor-in-Chief, PLOS ONE Dear Dr. Chenette: Re: Revised Submission PONE-D-21-35872 Thank you for reviewing our paper entitled “Perspectives from Designated Family Caregivers of Critically Ill Adult Patients During the COVID-19 Pandemic: A Qualitative Interview Study” and for inviting us to revise and resubmit. In response to the reviewers’ feedback, we revised the paper and believe we have improved the overall quality and applicability of our original research paper. In this Response Letter, we provide an item-by-item response to comments from all Reviewers, and the exact location of each revision (Section, Page, Paragraph) in the new (revised) manuscript. All changes made to the text of the manuscript are shown in yellow highlight. Each comment (verbatim) by the Reviewer is followed by our detailed response, with any relevant text changes provided in quotations. Thank you for considering our manuscript for publication. It is not under consideration for publication elsewhere, nor has it been presented in any form; we look forward to your decision. Yours sincerely, Kirsten Fiest, PhD Associate Professor, Departments of Critical Care Medicine, Community Health Sciences, & Psychiatry Cumming School of Medicine, University of Calgary Director, Research & Innovation, Department of Critical Care Medicine, Alberta Health Services Journal Requirements When submitting your revision, we need you to address these additional requirements. 1. Please ensure that your manuscript meets PLOS ONE's style requirements, including those for file naming. The PLOS ONE style templates can be found at https://journals.plos.org/plosone/s/file?id=wjVg/PLOSOne_formatting_sample_main_body.pdf and https://journals.plos.org/plosone/s/file?id=ba62/PLOSOne_formatting_sample_title_authors_affiliations.pdf RESPONSE: Thank you for providing PLOS ONE’s style requirements that were followed closely in preparing our revised manuscript and associated files. Please do not hesitate to contact us if there are additional requirements that were missed. 2. We note that you have indicated that data from this study are available upon request. PLOS only allows data to be available upon request if there are legal or ethical restrictions on sharing data publicly. For more information on unacceptable data access restrictions, please see http://journals.plos.org/plosone/s/data-availability#loc-unacceptable-data-access-restrictions. In your revised cover letter, please address the following prompts: a) If there are ethical or legal restrictions on sharing a de-identified data set, please explain them in detail (e.g., data contain potentially sensitive information, data are owned by a third-party organization, etc.) and who has imposed them (e.g., an ethics committee). Please also provide contact information for a data access committee, ethics committee, or other institutional body to which data requests may be sent. b) If there are no restrictions, please upload the minimal anonymized data set necessary to replicate your study findings as either Supporting Information files or to a stable, public repository and provide us with the relevant URLs, DOIs, or accession numbers. For a list of acceptable repositories, please see http://journals.plos.org/plosone/s/data-availability#loc-recommended-repositories. We will update your Data Availability statement on your behalf to reflect the information you provide RESPONSE: Thank you for providing the information required for our Data Availability statement. Below is our statement that is also provided on page 19 of our revised manuscript: Data cannot be shared publicly because of ethical restriction (i.e., patient confidentiality; data contains potentially sensitive information). Data may be available upon reasonable request from the University of Calgary Conjoint Health Research Ethics Board and Alberta Health Services research and innovation administration (contact via chreb@ucalgary.ca and research. administration@ahs.ca) for researchers who meet the criteria for access to confidential data. Reviewer #2: See comments in document. Need information about the main study. In general, The manuscript described a specific clinical event and social impact. It is a novelty in science. The small sample sizes gave some data to discuss but the conclusion needs to be adresses differently . Experiments seem to have been conducted rigorously, but details in need it in methodology and more information regarding the main research is need it. The conclusions must be drawn appropriately based on the data presented. 1. Abstract: Date? Period? RESPONSE: We appreciate that additional information is required to describe when the first and second waves occurred in geographical location. This information has been added to our Abstract (page 9) with the referenced statement that now reads as follows: “Throughout the study period a restricted visitation policy was mandated capturing the first (April 2020) and second (December 2020) waves of the pandemic that allowed one designated family caregiver (i.e., spouses or adult children) per patient to visit the ICU.” 2. Data Collection: How was selected the study population? How many patients was asked to participate before reaching 6 people? RESPONSE: Thank you for your inquiries. We have provided information on how the study population was selected on page 4 of our revised manuscript. We have clarified that the original study is currently ongoing and have provided the reference to the published protocol for the ongoing, original study. “We used a convenience sample, of designated family caregivers who participated in another (ongoing) study by our group and indicated interest in being contacted to participate in additional research projects [18].” Information on how many individuals were asked to participate is provided on page 6 of our revised manuscript that reads as follows: “Ten designated family caregivers participated in another study by our group from September 2020 to November 2020, of which eight (n=8, 80%) indicated interest in being contacted to participate in additional research projects through a telephone call (n=2, 25%) or an e-mail invitation (n=6, 75%) (Figure 1).” 3. Participants: These are data describing the patient, not the study population. To clarify RESPONSE: Thank you for your suggestion to clarify the presentation of our demographic information. The revised sentence on page 7 of our manuscript reads as follows: “Critically ill patients (related to family caregiver participants) were mostly male (n=4, 67%) with either some high school (n=2, 33%) or a Master’s degree (n=2, 33%).” 4. Family Caregiver Perceptions: Confused, to be explain RESPONSE: Thank you for your comment that indicated that perhaps a short description after each of the presented themes would be helpful to situate the reader to our findings. On page 9 of our revised manuscript, we have added brief descriptions after each of the six themes, including the ‘one visitor rule’ that was highlighted in your comment. This sentence now reads as follows: “Seven themes related to caring for a critically ill patient as the designated family caregiver during the COVID-19 pandemic were identified in the data: (1) one visitor rule (mandated in restricted visitation policies); (2) patient advocate role (being present to weigh in with the clinical care team); (3) information needs (receiving regular and clear information); (4) emotional distress (toward their critically ill loved one); (5) strategies for coping with challenges (related to restricted visitation policies); (6) practicing empathy (with members of the ICU care team); and (7) appreciation of growth (despite hardships) (Table 2).” 5. Discussion: It will important to discuss the fear of caregivers of having COVID vs going in Hospital, particularly before the Understanding of COVID and introduction of vaccination. Risk vs benefits RESPONSE: We agree with the reviewer that this is an important information that should be included in our discussion. We have added the following statements to page 16 of our revised manuscript to highlight the dearth of information regarding experiences and perspectives of family caregivers in COVID-19, particularly when forced to choose between visiting their loved one or risk of viral infection. “Most research has reported on short-term impacts of restricted visitation policies, few including perspectives from family caregivers themselves, and longer-term consequences of restricted visitation policies are vastly understudied [40-42]. In particular, experiences of family caregivers forced to decide between visiting their loved one or to place themselves at risk of infection from COVID-19 before the understanding of COVID and availability of vaccination.” https://doi.org/10.1371/journal.pone.0275310.r002
15 Sep 2022 Decision Letter - Marie-Pascale Pomey, Editor Perspectives from Designated Family Caregivers of Critically Ill Adult Patients During the COVID-19 Pandemic: A Qualitative Interview Study PONE-D-21-35872R1 Dear Dr. Fiest, We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements. Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication. An invoice for payment will follow shortly after the formal acceptance. To ensure an efficient process, please log into Editorial Manager at http://www.editorialmanager.com/pone/, click the 'Update My Information' link at the top of the page, and double check that your user information is up-to-date. If you have any billing related questions, please contact our Author Billing department directly at authorbilling@plos.org. If your institution or institutions have a press office, please notify them about your upcoming paper to help maximize its impact. If they’ll be preparing press materials, please inform our press team as soon as possible -- no later than 48 hours after receiving the formal acceptance. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org. Kind regards, Marie-Pascale Pomey Academic Editor PLOS ONE https://doi.org/10.1371/journal.pone.0275310.r003
Formally Accepted
19 Sep 2022 Acceptance Letter - Marie-Pascale Pomey, Editor PONE-D-21-35872R1 Perspectives from Designated Family Caregivers of Critically Ill Adult Patients During the COVID-19 Pandemic: A Qualitative Interview Study Dear Dr. Fiest: I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now with our production department. If your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information please contact onepress@plos.org. If we can help with anything else, please email us at plosone@plos.org. Thank you for submitting your work to PLOS ONE and supporting open access. Kind regards, PLOS ONE Editorial Office Staff on behalf of Dr. Marie-Pascale Pomey Academic Editor PLOS ONE https://doi.org/10.1371/journal.pone.0275310.r004

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