-->PONE-D-25-62443-->-->The forms and purpose of work undertaken by family carers of people living in a care home with a cognitive impairment across a care trajectory-->-->PLOS One

Dear Dr. Harrad-Hyde,

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.

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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?

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Reviewer #1: Yes

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

Reviewer #1: N/A

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Reviewer #1: No

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-->5. Review Comments to the Author

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Reviewer #1: Overview:

I enjoyed reading this paper and think in general it is well written and will be a useful addition to the literature. The paper starts with a good overview of the background and theory to this topic and the aims and rationale are clearly articulated. The focus on care work throughout the trajectory is welcome and it makes sense to look at this specifically for carers of people with cognitive impairment as the experience can differ for this group than, for example, carers for older people with physical impairment of frailty alone.

I like that the authors set out their position early on, both philosophically, and in terms of their lived experience, and a particular strength is their long-term engagement with a wider group of stakeholders. I did think that the authors’ reference to ‘accuracy’ (line 199) is perhaps inconsistent with their social constructivist philosophy – do they mean here that they checked back with stakeholders for their agreement on the account recorded?

The methods are well described, in particular the approach to recruitment and purposive sampling. I personally feel it is a shame that these were just one-off interviews, as longitudinal interviews would have given more opportunity to explore change over time, but focusing on carers’ accounts on trajectories is still valuable. This could perhaps be picked up in the limitation section.

I would like to see a little more detail in the Analysis section. In particular, how did the constructivist approach influence analysis? How did you move from codes to themes? Were stakeholders involved in this process?

I do not seem to have access to the demographics table, but it is mentioned in the limitations section that most participants were White British. However, the role of culture in care work is raised a few times in the Findings and I think this was an omission from the Background section (for example, there was nothing about how carers in different cultures experience care work). Similarly, the influence of culture on experiences of care could be returned to in the Discussion section.

Points to consider from the Findings section:

• I would reconsider use of the word ‘burden’ (line 274) as it is a loaded term

• Body work is described as ‘performed directly on the care recipient’s body.’ I appreciate that this is grounded in the literature/existing theory, but could the authors reflect on this language (which makes the person receiving care a passive object) - is it always ‘on’? Or is it sometimes ‘with’?

• The first paragraph on Comfort Work is a bit confusing in places as it moves from talking about ‘Whilst the person lived in their own home…’ to referring to taking the person ‘…out of the care home’.

• I was surprised there wasn’t more about comforting the person in this section - for example at the point of transition to the care home, which can be destabilising and even distressing for some people. If this did not come up in the interviews, I think that would be a finding in itself.

• I like the inclusion of Biography work – that is something that is important but is often overlooked – and I also like the connections made between this and other types of work.

• Line 463 refers to an ‘extract above’ describing work to maintain dignity and identity, but that extract seems to be more about how upsetting it is when this work is not done (by care home staff) – it just needs looking at again I think (perhaps they changed the quote when editing?)

Discussion:

For me, the Discussion section does need some work. For example, cultural and intersectional differences are noted here, but it would be nice to see deeper engagement with these potential nuances. Where the authors write: ‘We use the neutral term ‘body work’, but highlight the ways an individuals’ demographic characteristics and culture can shape their framing of this work.’ there is no reference to the literature, but I find it hard to believe that there isn’t any (and if there really isn’t then this itself is a point worth raising).

I agree that ‘coordination’ is a useful addition (potentially more relevant in this context than articulation work, although it may incorporate this.) The point about this coordination work being largely present-focused rather than future-focused is important as this has relevance for policy (re people not making advanced care plans etc) and ties in with literature suggesting that people affected by dementia (including families) may not plan for future care needs. There is published evidence on this that could be referenced (see for example Baxter, K., Gridley, K., & Birks, Y. (2025). The role of uncertainty in planning for self-funded social care for older people with a diagnosis of dementia. Ageing & Society, 45(3), 514-534. ).

On the other hand, I am not convinced by the explanation of the absence of ‘emotion work’ from the accounts reported. I think the authors need to say more here about what usually comes under the concept of ‘emotion work’ and then explore either where this fits in other aspects of their analysis, or alternatively engage more deeply with why this is missing (which to me is an unexpected finding). Is the difference here something to do with the difference between private and public labour, or could it be an artefact of their data collection (it might not be obvious to the interviewer, or in the interview transcripts, what emotional work the carer is doing behind the scenes, even in that very interview, to manage feelings)?

Overall, I might have expected more discussion of the dynamic aspects of the findings, which after all are about something that changes over time.

Lines 547-552 imply that carers finding it hard to balance paid work and caring work is a new finding – this is not new, there is a large body of literature on this, including research looking at carers’ decisions to leave employment, and studies evaluating interventions to support their continued employment. I would expect the authors to engage more with the existing literature here (and say what their findings add) rather than just call for more research.

I am not sure that the reference to more people dying in care settings due to demographic shifts tells the whole story – yes more people are dying in care homes, but I think the trend is also towards more people dying at home – what we are seeing is a policy shift away from dying in hospital (which is also arguably a care setting) (See Bone, A. E., Gomes, B., Etkind, S. N., Verne, J., Murtagh, F. E., Evans, C. J., & Higginson, I. J. (2018). What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. Palliative medicine, 32(2), 329-336. ) Nevertheless, I agree with the authors that more attention should be paid to the experience of caring for someone dying in a care setting (including where people are in temporary placements).

Implications

The authors discuss the skills required to do different types of care work – whilst I agree that much of this work is skilled, I do not feel like much evidence was presented about this in the Findings section – perhaps this can be reviewed (and some examples added) if it is going to be mentioned in the Implications? Similarly, they say that their findings support the need for training and education for carers, but the Findings focus on the types of work carers done, not how confident carers feel doing it/how skilled that work is. I have no doubt that training for carers is helpful, but the authors should cite evidence for this (ether form their own interviews, in the Findings, or from the literature in their Discussion).

Strengths and Limitations

Yes, strong stakeholder engagement is a real strength of this work.

I am not convinced by the recommendation for further work line 606 - seems very broad!

A limitation not listed is the absence of the voice of the people cared for in this research. I understand that the focus is carers and care work, but recognising that there will be multiple perspectives on care work and we only hear one side of a story (that as the authors have said is a social construction) would be helpful.

Minor things:

• There’s a typo in the abstract (it says ‘wee’ not ‘were’)

• Another typo on line 238 (first line of Analysis section) - repetition of the word ‘data’)

• Typo page 439 (says ‘One’ where it should say ‘Once’)

• 562 – missing word (level ‘of’ care)

• 582 Typo (‘may changes’ should be ‘may change’)

Thank you for the opportunity to review this interesting paper. I would recommend publication with minor revisions.

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Reviewer #1: No

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-->PONE-D-25-62443R1-->-->The forms and purpose of work undertaken by family carers of people living in a care home with a cognitive impairment across a care trajectory-->-->PLOS One

Dear Dr. Harrad-Hyde,

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 Jun 19 2026 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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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.

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We look forward to receiving your revised manuscript.

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Alejandro Torrado Pacheco, PhD

Associate Editor

PLOS One

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Reviewer #1: All comments have been addressed

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Reviewer #1: Yes

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Reviewer #1: N/A

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Reviewer #1: No

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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 #1: Thank you for your detail responses to my comments. I am satisfied with all except the final point on the absence of the voices of people receiving care. You have added the following sentence to the Discussion (lines 668-9) but I'm not sure this quite makes sense: 'Whilst this study aimed to describe the difference forms of work undertaken by family carers, by gathering data from family carers themselves focussed on carers. Further work could gather data from people receiving care.' Perhaps there are a couple of typos here, but it also doesn't fit well in the paragraph (turns it into a bit of a list) and so I would advise a full read through to ensure that adding sentences like this does not disrupt the flow of the manuscript as a whole before publication.

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Reviewer #1: No

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The forms and purpose of work undertaken by family carers of people living in a care home with a cognitive impairment across a care trajectory

PONE-D-25-62443R2

Dear Dr. Harrad-Hyde,

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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Kind regards,

Gursharan K Singh, PhD

Academic Editor

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Reviewers' comments:

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Reviewer #1: 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 #1: Yes

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Reviewer #1: N/A

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-->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 #1: Yes

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-->5. Is the manuscript presented in an intelligible fashion and written in standard English?

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Reviewer #1: Yes

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Reviewer #1: Thank you for addressing the final comments - I am satisfied that this paper is suitable for publication (there is a typo line 688 but that's very easily fixable).

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Reviewer #1: No

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