It’s made a really hard situation even more difficult: The impact of COVID-19 on families of children with chronic illness

Jordana McLoone; Claire E. Wakefield; Glenn M. Marshall; Kristine Pierce; Adam Jaffe; Ann Bye; Sean E. Kennedy; Donna Drew; Raghu Lingam

doi:10.1371/journal.pone.0273622

Peer Review History

Original SubmissionMay 17, 2022
10 Jun 2022 Decision Letter - Stephane Shepherd, Editor PONE-D-22-14320It’s made a really hard situation even more difficult: The impact of COVID-19 on families of children with chronic illnessPLOS ONE Dear Dr. McLoone, 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. Please submit your revised manuscript by Jul 25 2022 11:59PM. 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. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file. 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We will update your Data Availability statement to reflect the information you provide in your cover letter. 4. Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. If you need to cite a retracted article, indicate the article’s retracted status in the References list and also include a citation and full reference for the retraction notice. Additional Editor Comments: Thank you for your submission to PLOS ONE. The paper has now been reviewed by two experts in the field and I have also reviewed the paper. Both reviewers recommended minor revisions. As such I invite you to respond to reviewer suggestions and re-submit your manuscript. [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: Yes Reviewer #2: Yes ******** 2. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: Yes Reviewer #2: N/A ****** 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: Yes Reviewer #2: No ****** 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: Strengths: • This study characterizes the pandemic experiences and challenges of families of children with chronic illness, identifying the need for additional supports and value of telehealth for this high risk population in such circumstances. It provides a unique perspective of parents of children with chronic illness, who are often overlooked. • Several strategies that are helpful for management of children with chronic care needs were identified that can be applied in future pandemic situations as well as for ongoing routine care. • Qualitative methodology allowed for rich data collection. Saturation was achieved in identification of common themes. • Well written and compelling paper. Weaknesses: • Relatively small sample size of 13 parents, although saturation was reached in exploring themes. • Heterogeneity of chronic illnesses where different challenges may have occurred. • Did not include the perspective of children with chronic illness or health care providers, as has been reported in other similar studies. Comments/Suggestions: • This study provides a unique context, during the pandemic in Australia, whose incidence of COVID infection and public health measures differed from other countries. Other work exploring this issue in other countries occurred in a context where COVID was more prevalent and school closures were more prolonged, yet the issues identified are similar. (In addition to references cited, see also Nicholas et al, Pediatrics and Child Health, May 2022, https://doi.org/10. 1093/pch/pxab103). This is worth adding to the discussion, particularly to highlight what is unique about this study population compared to others reported in the literature. • A more detailed explanation of the “Contactless” program alluded to in the discussion would be useful to the reader. Reviewer #2: Thank you for the opportunity to review your paper which I read with great interest. This is a robust qualitative paper that requires very little work to make it a paper that I think should be published. There are some minor issues with punctuation that need to be addressed (see my comments in the attached manuscript re use of full stops with quotations). There are a few instances where an apostrophe is missing in it's. I think Table 2 should be supplementary material rather than part of the main paper - it's a big table and the quality and comprehensiveness of the quotes already integrated into the text is already sound. It would have been helpful if the COREQ checklist had been available for cross checking but this may not be a requirement of PLOS ONe. The figure showing the complexity of overlap with the themes is good but the quality of the image is not great..... text looks fuzzy, so maybe this could be addressed. Good luck with the paper and I look forward to seeing it published. ****** 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: No 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-22-14320_reviewer-bc.pdf https://doi.org/10.1371/journal.pone.0273622.r001
Revision 1
4 Aug 2022 Author Response Dear Dr Sheperd and Reviewers, Manuscript ID: PONE-D-22-14320 Title: It’s made a really hard situation even more difficult: The impact of COVID-19 on families of children with chronic illness We thank the reviewers for taking the time to consdier the above-named manuscript submitted to PLOS One, and for their thoughtful suggestions in the email dated 11th June, 2022. We are grateful for the opportunity to make the suggested amendments and further enhance our manuscript. Please see below for our detailed responses to each of the reviewer’s comments (in bold) and find attached the revised manuscript for your consideration. Editor’s comments: 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 We have reviewed all our files and are confident that they now meet the style requirements of the journal, including file naming. 2. Thank you for stating the following in the Acknowledgments Section of your manuscript: "The authors acknowledge the support of the Maridulu Budyari Gumal, The Sydney Partnership for Health, Education, Research & Enterprise (SPHERE) Child Unlimited Clinical Academic Group; CEW is supported by the National Health and Medical Research Council of Australia (APP2008300)." We note that you have provided funding information that is not currently declared in your Funding Statement. However, funding information should not appear in the Acknowledgments section or other areas of your manuscript. We will only publish funding information present in the Funding Statement section of the online submission form. Please remove any funding-related text from the manuscript and let us know how you would like to update your Funding Statement. Currently, your Funding Statement reads as follows: "The author(s) received no specific funding for this work." Please include your amended statements within your cover letter; we will change the online submission form on your behalf. Our sincere apologies for this confusion. We have deleted all funding information from the manuscript. In terms of updating the Funding Statement, we would like to acknowledge SPHERE. “The authors acknowledge the support of the Maridulu Budyari Gumal, The Sydney Partnership for Health, Education, Research & Enterprise (SPHERE) Child Unlimited Clinical Academic Group.” Thank you very much for amending this on our behalf. 3. In your Data Availability statement, you have not specified where the minimal data set underlying the results described in your manuscript can be found. We will update your Data Availability statement to reflect the information you provide in your cover letter. Apologies for not previously providing a Data Availability statement. Given that this research is qualitative in nature, the raw data (i.e. interview transcripts), contain highly sensitive and personal information. This information is medical and personal and refers to children (minors). There is no possible way of deidentifying the data in full due to countless referrals to identifiable information such as the participant’s name, the child’s name, demographic information, the child’s rare disease, the family’s unique situation, the time of year certain events occurred, the school, the hospital, etc. In addition, we are restricted by the relevant ethics committee to not allow access to this data unless expressly named in the approved application. All requests for access to data can be made to either myself, Jordana Mcloone (J.Mcloone@unsw.edu.au) or to the ethics committee, quoting the study reference number: 2020/ETH02434. The Sydney Children’s Hospital Network Human Research Ethics Committee (SCHN HREC) Email: SCHN-Ethics@health.nsw.gov.au Phone +612 9845 1253. Mail: ‘Research Ethics’ at the Sydney Children’s Hospital Network, Locked Bag 4001, Westmead, 2145, NSW, Australia 4. Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. If you need to cite a retracted article, indicate the article’s retracted status in the References list and also include a citation and full reference for the retraction notice. The reference list has been checked and we are confident all papers are cited correctly. Reviewer #1: We would like to thank Reviewer 1 for their kind comments and acknowledgement of the study’s strengths. In response to their “Comments/Suggestions”, we would like to share how we have amended the manuscript to improve upon these aspects. 1. This study provides a unique context, during the pandemic in Australia, whose incidence of COVID infection and public health measures differed from other countries. Other work exploring this issue in other countries occurred in a context where COVID was more prevalent and school closures were more prolonged, yet the issues identified are similar. (In addition to references cited, see also Nicholas et al, Pediatrics and Child Health, May 2022, https://doi.org/10. 1093/pch/pxab103). This is worth adding to the discussion, particularly to highlight what is unique about this study population compared to others reported in the literature. We thank you for bringing this paper to our attention and have included this reference in our manuscript, as well as alluding to your greater point about the similarity of themes, despite the differences in context. “Despite experiencing lower levels of COVID-19 than many other parts of the world, especially during 2020, disruptions to health, education and social support have had an acute psychosocial impact on Australian families of children with chronic illness. These themes of mental health impact, feelings of loneliness and isolation, and changes to organisations and policies shaped by COVID-19, have been similarly identified among other populations where COVID-19 was more prevalent and school closures more prolonged (1) Adequately responding to and addressing the needs of families of children with chronic illness, as well as planning for the minimization of longer-term impacts om well-being is critical.” 2. A more detailed explanation of the “Contactless” program alluded to in the discussion would be useful to the reader. Thank you for this helpful suggestion. We have added some additional information about Contactless, which does not do such a complex project justice, but will at least allow readers to appreciate its model as they read. “Comprehensive models that offer a number of services, increase in complexity as needed, and address needs from diagnosis to disease progression and long-term care are required. Such programs are beginning to emerge, including Contactless (25), which specifically addresses the care needs of pediatric patients with rare and chronic conditions, who typically need regular follow-up even in the absence of acute events. Contactless is a multimodal, multidisciplinary remote-care model with a modular framework allowing basic care, with escalation on need, up to the more accurate and complex levels of care (2).” Reviewer #2: We would also like to thank Reviewer 2 for their insightful comments and suggestions. 1. There are some minor issues with punctuation that need to be addressed (see my comments in the attached manuscript re use of full stops with quotations). There are a few instances where an apostrophe is missing in it's. We sincerely thank Reviewer 2 for taking the time to make such detailed edits on the manuscript. We have transferred and amended each of these edit notes to the track-changed version and clean version of the revised manuscript, and ran a search of all the it/it’s throughout the manuscript paying close attention to ensure we captured and revised each instance. 2. I think Table 2 should be supplementary material rather than part of the main paper - it's a big table and the quality and comprehensiveness of the quotes already integrated into the text is already sound. We agree and have confirmed with the journal that this is their preference also. Table 2 is now included as Supplementary material. 3. It would have been helpful if the COREQ checklist had been available for cross checking but this may not be a requirement of PLOS ONe. We have checked with the journal and they communicated that this is not a requirement as you suggested may be the case. However, we have made a reference to the COREQ in the methods section. “We used the COREQ (19) checklist to promote accurate reporting of qualitative studies.” 4. The figure showing the complexity of overlap with the themes is good but the quality of the image is not great..... text looks fuzzy, so maybe this could be addressed. We have checked this thoroughly and used the journal’s image enhancer software to obtain the greatest quality possible for the image. We have also flagged this with the journal and asked that their formatting and production team work with the image to achieve the best possible clarity. Good luck with the paper and I look forward to seeing it published. I hope you will agree that we have adequately addressed the queries raised by the reviewers. Should you have any further questions, please do not hesitate to contact. Thank you for considering our revised manuscript. We look forward to your response. Regards, Jordana MdLoone https://doi.org/10.1371/journal.pone.0273622.r002
12 Aug 2022 Decision Letter - Stephane Shepherd, Editor It’s made a really hard situation even more difficult: The impact of COVID-19 on families of children with chronic illness PONE-D-22-14320R1 Dear Dr. McLoone, 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, Stephane Shepherd, Ph.D Academic Editor PLOS ONE Additional Editor Comments (optional): Reviewers' comments: https://doi.org/10.1371/journal.pone.0273622.r003
Formally Accepted
23 Aug 2022 Acceptance Letter - Stephane Shepherd, Editor PONE-D-22-14320R1 It’s made a really hard situation even more difficult: The impact of COVID-19 on families of children with chronic illness Dear Dr. McLoone: 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. Stephane Shepherd Academic Editor PLOS ONE https://doi.org/10.1371/journal.pone.0273622.r004

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