PONE-D-21-00726

What does it mean to be the main caregiver to a terminally ill family member in Lithuania: the caregivers’ perspectives

PLOS ONE

Dear Dr. Kuznecoviene,

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.

Reviewers have found that the topic of the research is interesting to the field. However there are some major issues that should be addressed. Please follow the COREQ guidelines for the presentation of qualitative research and include all the methodological information (required by reviewer 2) in the method section of the manuscript. 

Please submit your revised manuscript by Apr 02 2021 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.

Please include the following items when submitting your revised manuscript:

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• An unmarked version of your revised paper without tracked changes. You should upload this as a separate file labeled 'Manuscript'.

If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. Guidelines for resubmitting your figure files are available below the reviewer comments at the end of this letter.

If applicable, we recommend that you deposit your laboratory protocols in protocols.io to enhance the reproducibility of your results. Protocols.io assigns your protocol its own identifier (DOI) so that it can be cited independently in the future. For instructions see: http://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols

We look forward to receiving your revised manuscript.

Kind regards,

Manuel Fernández-Alcántara, Ph.D.

Academic Editor

PLOS ONE

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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: Partly

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2. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #1: N/A

Reviewer #2: Yes

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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: Yes

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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

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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 of the submission include the following:

1) Given the nascent nature of palliative care services in Lithuania, and the critical role that family caregivers play in providing care to those with life-limiting illnesses, it is important to examine and describe family caregiver experiences within this specific geographical context.

2) Overall, the paper is well organized and written.

3) The data exemplars provided help to illustrate and appear emblematic of the themes presented.

4) There is mention of a theoretical grounding for the study, i.e. role theory.

5) The sampling approaches and data analysis procedures are well described and there is some mention of the issue of rigor.

Areas requiring attention to strengthen the submission:

1) The authors do reference some family caregiver literature in their paper, but the manuscript lacks a critical synthesis of the large body of family caregiver research that has been done to date. I would have expected to see included the seminal works of Dr. Linda Kristjanson, for example. The authors do situate their findings vis a vis some extant work, but their findings are not that surprising, and it begs the question as to why they conducted the particular study that they did. I appreciate that their might be cultural variations, but the exact gap that the project purported to fill is not compelling.

2) To their credit, the authors identify role theory, particularly the thinking of Merton, as informing their work. The paper would have been stronger had they provided more information about the theory and its underlying assumptions, as well as a critique of its limitations. For example, not all family members will agree to undertake the caregiver role, and such a stance would be seen as deviant behavior. How does role theory account for this? To what extent does the use of role theory as a theoretical lens reinforce commonly held notions about how people should behave? This is particularly relevant given that the majority of caregivers in the study were women of a certain generation.

3) The biggest limitation in the paper is that the authors invoke the notion of dignity, and dignified care, but never define the construct, or integrate the well developed body of literature about dignity and end of life care in the paper. This is a significant gap.

4) The issue of corruption in paying to help ensure better care provision in institutions and/or to “move patients up in the queue is an important, albeit disturbing finding. The manuscript would have been strengthened had this finding been situated within literature that exists talking about the magnitude of the problem of corruption, and the responsibilities of researchers in all countries in helping to address it. (e.g. see Lancet 2019 https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)32527-9/fulltext)

5) I appreciate the need to move to virtual interviews for data collection amidst the strain of the pandemic! Despite advantages including convenience and interactivity of collecting data virtually, the literature does document a number of ethical, practical, and interactional issues associated with the use of digital technologies. The paper would have been stronger had these been mentioned in the paper, and the authors’ experiences compared with them.

Reviewer #2: The topic itself on “What does it mean to be the main caregiver to a terminally ill family member in Lithuania: the caregivers’ perspectives” has the potential to become an issue of caregivers. The study conceptualized  caregivers’ understanding of the functions that they assume while being the main caregivers, and to understand how they experienced the consequences they confronted for filling the research gap. The paper deals with an important topic that is likely to be of interest to the researchers. In its current form, I may suggest the author modified the errors of details and enhance the final manuscript.

Introduction

(1)It is better to state more clearly about the objectives and research questions.

Materials and Methods

(1)Consider the guide for the presentation of qualitative studies (COREQ)

(2)It is better to state clearly why 33 caregivers included in the current study?

(3)The authors adopted qualitative methods in the current study. It is better to state clearly the logic of qualitative methods. It is better to provide a table about descriptive conditions about the interviewees.

(4)The authors should state clearly about the setting of data collection, number of participants that refused to participate or dropped out, field notes, data saturation.

Results

（1）The authors should state clearly why the paper include 4 themes of the main caregiver of a terminally ill family member and the meaning of the caregiver role.

（2）The authors should state about number of data coders, consistency between data and findings, software used, and participant feedback.

Discussions

(1)The discussion part should connect with the results part, at present, the themes in the part of results have not been stated in the discussion part.

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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

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Attachments

Attachment

Submitted filename: Plos One.docx

PONE-D-21-00726R1

What does it mean to be the main caregiver to a terminally ill family member in Lithuania: the caregivers’ perspectives

PLOS ONE

Dear Dr. Kuznecoviene,

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.

Authors have addressed the suggestions and commentaries of reviewers. However, I have noted two minor points that should be addressed before final acceptance:

- Please modify the title of the manuscript to include the qualitative design. I will recommend something as " What does it mean to be the main caregiver to a terminally ill family member in Lithuania: a qualitative study".

- The first paragraph of the introduction (where authors state their objectives) should be placed at the end of the introduction (just before Material and Methods section)

Please submit your revised manuscript by Jun 27 2021 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.

Please include the following items when submitting your revised manuscript:

• A rebuttal letter that responds to each point raised by the academic editor and reviewer(s). You should upload this letter as a separate file labeled 'Response to Reviewers'.
• A marked-up copy of your manuscript that highlights changes made to the original version. You should upload this as a separate file labeled 'Revised Manuscript with Track Changes'.
• An unmarked version of your revised paper without tracked changes. You should upload this as a separate file labeled 'Manuscript'.

If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. Guidelines for resubmitting your figure files are available below the reviewer comments at the end of this letter.

If applicable, we recommend that you deposit your laboratory protocols in protocols.io to enhance the reproducibility of your results. Protocols.io assigns your protocol its own identifier (DOI) so that it can be cited independently in the future. For instructions see: http://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols. Additionally, PLOS ONE offers an option for publishing peer-reviewed Lab Protocol articles, which describe protocols hosted on protocols.io. Read more information on sharing protocols at https://plos.org/protocols?utm_medium=editorial-email&utm_source=authorletters&utm_campaign=protocols.

We look forward to receiving your revised manuscript.

Kind regards,

Manuel Fernández-Alcántara, Ph.D.

Academic Editor

PLOS ONE

Journal Requirements:

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.

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Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation.

Reviewer #2: All comments have been addressed

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2. 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 #2: Yes

**********

3. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #2: Yes

**********

4. 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 #2: Yes

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5. 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 #2: Yes

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6. 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 #2: I think the revised version is acceptable. The authors have made efforts on paper writing, especially the introduction part.

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7. 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 #2: Yes: Yong TANG

[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.

PONE-D-21-00726R2What does it mean to be the main caregiver to a terminally ill family member in Lithuania: A qualitative studyPLOS ONE

Dear Dr. Kuznecoviene,

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 ensure that your decision is justified on PLOS ONE’s publication criteria and not, for example, on novelty or perceived impact.

For Lab, Study and Registered Report Protocols: These article types are not expected to include results but may include pilot data. 

==============================

Please submit your revised manuscript by 23 November 2021. 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.

Please include the following items when submitting your revised manuscript:

• A rebuttal letter that responds to each point raised by the academic editor and reviewer(s). You should upload this letter as a separate file labeled 'Response to Reviewers'.
• A marked-up copy of your manuscript that highlights changes made to the original version. You should upload this as a separate file labeled 'Revised Manuscript with Track Changes'.
• An unmarked version of your revised paper without tracked changes. You should upload this as a separate file labeled 'Manuscript'.

If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. Guidelines for resubmitting your figure files are available below the reviewer comments at the end of this letter.

If applicable, we recommend that you deposit your laboratory protocols in protocols.io to enhance the reproducibility of your results. Protocols.io assigns your protocol its own identifier (DOI) so that it can be cited independently in the future. For instructions see: https://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols. Additionally, PLOS ONE offers an option for publishing peer-reviewed Lab Protocol articles, which describe protocols hosted on protocols.io. Read more information on sharing protocols at https://plos.org/protocols?utm_medium=editorial-email&utm_source=authorletters&utm_campaign=protocols.

We look forward to receiving your revised manuscript.

Kind regards,

Andrew Soundy

Academic Editor

PLOS ONE

Journal Requirements:

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 (if provided):

• Please make sure the reader understands the philosphical underpinnings of descriptive thematic analysis – I have had a look at your reference 27 that states: “Applied thematic analysis as we define it comprises a bit of everything—grounded theory, positivism, interpretivism, and phenomenology—synthesized into one methodological framework” – personally I find that statement extremely odd because they mention, paradigms of positivism and interpretivism which are opposites alongside methodologies of grounded theory (but don’t name a type) and phenomenology (again no type is given). You will have to reference this because a reader needs to understand how you view the world using this approach and readers will expect a statement that considers a paradigm and methodology. To me it sounds like a pragmatic approach which uses different tools from paradigms and methodologies.

• Have a separate sub-heading for the interview guide and its development

• Have a separate sub-heading for procedures

• Reference 27 doesn’t mention ethnographic interviewing (line 170) it mentions grounded theory and phenomenology (but not types) – talking about ethnography may confuse the reader so consider rewording

• Have a section on sample size and how you decided when to stop interviewing

• Results seem to appear from around line 196 – 218 – please move to the start of the results

• Please include an audit trail with examples of analysis in a supplementary file readers need to have short example stages that they should go through should they wish to use the approach again - given reference 27's loose consideration to this it is important examples are provided

• Please include the original and any modified interview script in a supplementary file

• Please include a section on how quality was ensured – make sure it has its own sub-heading

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Reviewers' comments:

[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.

What does it mean to be the main caregiver to a terminally ill family member in Lithuania: A qualitative study

PONE-D-21-00726R3

Dear Dr. Kuznecoviene,

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.

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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,

Andrew Soundy

Academic Editor

PLOS ONE

Additional Editor Comments (optional):

Reviewers' comments: