PONE-D-25-19589

“It Feels Like My Spine is About to Break”: Experience and Support Needs of Family Caregivers of Children with Cerebral Palsy in Ethiopia

PLOS ONE

Dear Dr. Melak,

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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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: Yes

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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. 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. 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. 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?

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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: Thank you for the opportunity to review the manuscript addressing the caregiving experiences of mothers of children with cerebral palsy (CP) in Ethiopia. Findings are important and interesting, shedding light on the lived realities of caregivers in a significantly under-researched context.

Below, I offer several comments and suggestions aimed at further strengthening the manuscript:

1. Literature Review and Framing:

- It would be helpful to distinguish more clearly between findings from HICs and LMICs, both in the introduction and the discussion sections.

- The rationale for the importance of conducting the study in Ethiopia could be expanded and would help justify the study more fully.

- Please clarify whether institutionalization or abandonment of children with CP is prevalent in the Ethiopian context. Since this option was mentioned by some mothers during the interviews, further contextualization would help the reader understand whether this reflects a broader social reality or isolated perceptions.

2. Methods:

- The methodology section is well written, but the introduction could briefly preview the sampling rationale and characteristics (e.g., severe CP, broad age range).

- Further details on the recruitment process (e.g., how caregivers were contacted) would enhance transparency.

- Are any of the children dependent on medical equipment (e.g., respiratory devices)?

- The setting description could be streamlined for focus and clarity.

- Please provide more context for the use of the Multidimensional Model of Caregiving Process and Outcome, which informs the interview guide.

- Consider explaining the predominance of girls with CP in the sample, in contrast with general statistics.

3. Findings:

Where possible, quantify or summarize the prevalence of key themes (e.g., “most parents reported…”), which can help convey the relative weight of each theme and guide the reader through the findings.

In the section on acceptance and spirituality, some subthemes could be grouped under coping. Consider avoiding repetition of quotes or phrasing (e.g., regarding emotional growth or stigma).

When referring to “natural support,” acknowledge that the same support sources may also cause distress, as was reflected earlier in the findings.

4. Discussion:

• The discussion would benefit from clearer articulation of how formal and natural support systems can be balanced.

• The finding that most children were not enrolled in any educational framework deserves further attention. Is this reflective of systemic issues or specific to the sample?

• I recommend that the gendered dimension of caregiving be highlighted more strongly. Since almost all caregivers were mothers, this calls for greater attention to gender-based inequities in care work, and the specific burdens mothers face in resource-limited settings.

• Clarifying the practical relevance of the findings and their significance in the context of global caregiving challenges would help international readers better appreciate the contribution of the study.

• please note that functional classifications such as GMFCS and MACS were determined by parents rather than clinicians, which may limit the precision of these measures.

Reviewer #2: Thank you for submitting the manuscript for my review. The manuscript essentially meets the seven publication criteria required by PLOS ONE. I will first present the strengths of the manuscript’s content, followed by a discussion of its weaker aspects.

The main value of the manuscript submitted for review lies in its empirical foundation: sociological qualitative research on the experiences of caregivers of children with cerebral palsy in Ethiopia.

1. Appropriateness of the methodological approach – the use of an exploratory, descriptive qualitative approach is well justified by the authors. The study addresses a topic that remains underexplored in the Ethiopian context.

2. Well-described data analysis – the use of reflexive thematic analysis (Braun & Clarke), along with a clear description of the coding stages and collaboration with multiple researchers, makes the analysis reliable and trustworthy.

3. Attention to the ethical dimension of the research – the authors ensured the approval of ethics committees, transparency in the recruitment process, and sensitivity to the symbolic competence level of the participants.

4. The efforts made by the authors/researchers to ensure the trustworthiness of the presented data – credibility, dependability, confirmability, and transferability also deserve recognition.

5. The study is grounded in a thoroughly presented socio-cultural context – including the role of religion, traditional gender roles, and spiritual beliefs about disability – as well as in the context of Ethiopia's healthcare system. This allows deeper understanding of the caregivers' situation and enriches the analysis.

6. The structure of the presentation of research findings is logical, clear, and well-organized.

7. It is worth noting that the authors are familiar with the socio-medical concept of “success in illness”, which allowed them to include the caregivers’ positive experiences in their analysis. This balanced approach to the caregivers’ experiences should be recognized and appreciated.

8. The Discussion section is very well written – it demonstrates strong links to the literature, includes critical reflection, and clearly outlines practical implications proposed by the authors.

I will now present the weaker aspects of the manuscript and the research described within it.

Materials and Methods

1. There is no justification provided for the number of study participants (N = 13). The concern is not about the relatively small sample size itself – qualitative methodology does not require large samples – but rather about whether data saturation was achieved. What determined the decision to stop including additional caregivers in the study? According to qualitative methodological standards, this decision should be based on theoretical saturation of the collected material – that is, the point at which no new categories emerge from additional data. Was this the case in the present study? It remains unclear whether and how saturation was reached. The mention of "information power" is vague and does not clarify this point.

2. My next concern relates to the lack of anonymity in the study. The participants may not have perceived their participation as anonymous or confidential, given that they were required to sign written consent forms containing identifying information. This procedure may have reduced the participants’ openness during the interview and weakened the level of trust toward the researcher. Although the consent forms were later anonymized and the participants were assigned numerical identifiers, the act of signing one’s name is not a neutral action – especially when the interview involves emotional, intimate, and difficult topics. For this type of research, verbal consent – recorded together with the interview – would have been more appropriate.

3. The research tool attached (Appendix 1) includes only broadly formulated questions. There is no indication of any follow-up or probing questions the researcher used to explore specific topics in depth.

Findings

4. I have reservations about the way the research findings are presented. Here we have an abundance of quotes and very modest, shallow interpretations by the authors (especially in Topic 1). Although the use of the participants’ direct statements strengthens credibility, deepens the analysis, and superbly illustrates the emotions and context, the authors’ commentary is too sparse and lacks analytical depth. Description clearly dominates here, without deeper conceptualizations. The interpretative potential of the collected qualitative material should be utilized more thoroughly.

5. The presented research findings also lack individual differences, descriptions of various cases beyond the main themes, which contradicts the standards for reporting qualitative data (e.g., COREQ checklist, 2007, item 32). The caregivers’ experiences may vary depending on the sociodemographic characteristics, family situation, or attitude toward religion. While reading the findings, I wondered about the answers to the following questions: Does the level of caregivers’ education influence their understanding of the diagnosis? Does the family situation (e.g. divorce) affect the adaptation process to the child’s disability? Does having more children influence the process of coming/the ability to come to terms with the child’s illness? Was faith in God a facilitating factor in coping with the child’s disability for every caregiver? Was this true for every caregiver who declared themselves as Orthodox Christians? In the context of care for a child with CP, does the birth order of the affected child matter? Did the ongoing civil war in the study region (Amhara) impact the participants’ experiences (for example, through worsening of their economic situation and causing additional stress)? I am convinced that data on secondary themes/experiences of the caregivers could make the analyses more diverse and even more interesting. Highlighting individual differences could successfully broaden and deepen the authors’ interpretations, as qualitative research is not about just citing respondent statements, which in the text are numerous, lengthy, and therefore overrepresented.

6. The analysis of the empirical material could be deepened by incorporating field notes, which the authors only briefly mention. From the text, we know that the researcher made them after the interviews, but we do not know whether their content was consistent with the interviews. I am curious if they included the researcher’s observations regarding the caregivers’ health functioning (visible spinal problems, possible difficulties with walking, or overall physical fitness). How does the lack of assistive equipment (e.g. standing frames, hoists) affect the caregivers’ physical health? It is impossible to conduct an interview without also performing participant observation.

I assess the text as valuable. The presented research findings identifying the specific needs of caregivers of children with CP are very interesting and undoubtedly have practical value for designing support for this group of parents in Ethiopia. In my opinion, the authors should be given the opportunity to publish the text after implementing the recommended corrections and addressing the above remarks.

Recommendations for Development of the Research Project:

1. Due to the highly diverse social structure of Ethiopia, in my opinion, the research should be continued and extended to rural populations or other regions of the country. The recruitment was limited to participants from a city covered by a single CBR program (Gondar), which weakens the transferability of the results.

2. Although mothers are the main caregivers, their exclusive participation may limit insight into family care processes. The study could benefit from including fathers, grandparents, or siblings of children with CP.

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Reviewer #1: No

Reviewer #2: No

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Dear Dr. Melak,

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.

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

The manuscript has been evaluated by two reviewers, and their comments are available below. The reviewers have raised a number of concerns that need attention. Could you please revise the manuscript to carefully address the concerns raised?

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Please submit your revised manuscript by Nov 16 2025 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.. 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.. 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.. 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.

• 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.

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We look forward to receiving your revised manuscript.

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Johanna Pruller, Ph.D.

Senior Editor

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Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

Reviewer #1: All comments have been addressed

Reviewer #2: All comments have been addressed

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2. Is the manuscript technically sound, and do the data support the conclusions??>

Reviewer #1: Yes

Reviewer #2: Yes

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

Reviewer #1: N/A

Reviewer #2: 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.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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5. Is the manuscript presented in an intelligible fashion and written in standard English??>

Reviewer #1: Yes

Reviewer #2: Yes

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Reviewer #1: I would like to thank you again for the opportunity to review this revised manuscript. The authors have seriously and thoughtfully addressed the comments raised in the previous review round, and the revisions have considerably strengthened the paper. At the same time, I believe there remain several areas that would benefit from further clarification and elaboration:

1. Authers stated that "While previous studies from other countries could provide some insight, the unique socio-cultural and economic factors, such as the spiritual and collectivist nature of Ethiopian society (Karbo, 2013), multidimensional poverty (UNDP., 2022a), and stigma (Zuurmond et al, 2022) might influence the caregiving experience differently"- the term “stigma” remains too general and vague. It would be helpful to clarify what kind of stigma is referred to, and to whom.

2. Disability services and formal caregiving support – The mention of the limited availability of services and support systems in Ethiopia is important, but somewhat underdeveloped. I encourage the authors to either provide supporting references or expand on concrete details regarding the types of services lacking and how this impacts caregiving for children with CP.

3. Impact of conflict and instability – The authors added valuable examples of how the ongoing conflict and instability in the region affect economic challenges. However, I wondered whether there are more specific examples relevant to caregiving itself (e.g., access to rehabilitation, transportation difficulties, or disruptions to medical or educational services).

4. Moreover, if the authors address the critical nuance of caregiving in a conflict zone (which I think adds complexity and relevance), I recommend expanding the background and/or discussion to include theoretical or empirical literature on the impact of protracted political conflict or war on quality of life and caregiving for children with disabilities, including CP. This would add depth and situate the findings within a broader scholarly framework.

Reviewer #2: The author responded to all comments in a thorough and systematic manner, citing relevant literature and revising the manuscript to address missing elements (e.g., probing questions, explanation of limitations, the role of field notes, and the impact of regional conflict). It is clear that all issues raised by the reviewer were taken seriously and are reflected in the revised version of the manuscript.

Strengths of the response:

Clear reference to each comment,

Implementation of changes in the manuscript according to the reviewer’s suggestions,

Deep reflection on ethical procedures,

Expanded methodology section and discussion of study limitations.

Weaknesses:

No explicit statement that data saturation was achieved; instead, the author relies solely on the concept of “information power,” which does not fully meet the reviewer’s expectations,

Limited response to concerns about “shallow interpretation”—rather than deepening the analysis, the author primarily defended the chosen methodological approach (exploratory-descriptive).

Recommendation:

The responses are convincing and should satisfy the editors; however, it may be worth considering:

Adding a brief note stating that after a certain number of interviews no new categories emerged (which would suggest that saturation was indeed achieved),

Adding 2–3 additional sentences in the discussion to further elaborate on interpretation, for example by linking the findings to the broader literature to demonstrate that the analytical potential of the data was fully utilized within the chosen approach.

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what does this mean?). If published, this will include your full peer review and any attached files.). If published, this will include your full peer review and any attached files.). If published, this will include your full peer review and any attached files.). 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 For information about this choice, including consent withdrawal, please see our For information about this choice, including consent withdrawal, please see our For information about this choice, including consent withdrawal, please see our Privacy Policy..-->

Reviewer #1: No

Reviewer #2: No

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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 . 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 . 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 . 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.. Please note that Supporting Information files do not need this step.. Please note that Supporting Information files do not need this step.. Please note that Supporting Information files do not need this step.

Dear Dr. Melak,

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 Mar 21 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.. 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.. 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.. 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.

• A 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'.
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Kind regards,

Helen Howard

Staff Editor

PLOS One

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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

Reviewer #1: All comments have been addressed

Reviewer #2: All comments have been addressed

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2. Is the manuscript technically sound, and do the data support the conclusions??>

Reviewer #1: Yes

Reviewer #2: Yes

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

Reviewer #1: N/A

Reviewer #2: 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.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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5. Is the manuscript presented in an intelligible fashion and written in standard English??>

Reviewer #1: Yes

Reviewer #2: Yes

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Reviewer #1: The revised manuscript demonstrates improvement compared to the previous version. The discussion is more comprehensive and better grounded in the literature, and the authors provide clearer, more reasonable explanations of the study's methodological aspects. However, several minor issues still require further clarification, as outlined below.

1. In the statement, “In this context, caregiving could impose a double burden on women who already have demanding day-to-day roles and might also exclude them from participation in all areas of life, such as education, employment, and decision-making, which in turn affect their ability to provide optimal care for their child with CP,”

the authors are encouraged to clarify what is meant by “decision-making.” Specifically, it would be helpful to distinguish whether this refers to household decision-making, healthcare-related decisions, or broader social and community-level participation. In addition, the authors should more explicitly explain the mechanisms through which exclusion from decision-making may influence the quality of care provided to children with CP.

2. The issue of providing accurate psychoeducational information and addressing misconceptions is highly important; however, this section would benefit from clearer articulation. Specifically, the authors are encouraged to clarify how the proposed strategies (e.g., multidisciplinary rehabilitation, professional guidance, and training religious leaders) contribute to improving caregivers’ understanding and satisfaction. In addition, it would strengthen the discussion to support these recommendations with references to empirical studies demonstrating that such approaches have been effective in similar contexts.

3. A proofreading of the Discussion section is required, as it contains several language and phrasing issues. (e.g., the phrase “Contrary to study” is one example and should be revised to “Contrary to the present study” or “In contrast to the findings of this study”); punctuation should be added where necessary etc.

Reviewer #2: The authors’ responses are satisfactory and adequately address all concerns raised. The revisions substantially strengthen the manuscript, both in terms of methodological justification and the depth of interpretation. Therefore, I recommend the manuscript for publication.

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what does this mean?). If published, this will include your full peer review and any attached files.). If published, this will include your full peer review and any attached files.). If published, this will include your full peer review and any attached files.). If published, this will include your full peer review and any attached files.

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Reviewer #1: No

Reviewer #2: No

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“It Feels Like My Spine is About to Break”: Experience and Support Needs of Family Caregivers of Children with Cerebral Palsy in Ethiopia

PONE-D-25-19589R3

Dear Dr. Melak,

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,

Taiwo Opeyemi Aremu, MD, MPH, PhD

Academic Editor

PLOS One

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