The Experiences of Hungarian Minority Parents of Children with Severe Disability from Romania

Round 1

Reviewer 1 Report

Comments and Suggestions for Authors

Thank you for the opportunity to review the manuscript, kindly receive my feedback

Abstract

Line 17: “The analysis of the semi-structured interviews…” shorten to “The findings reveal…”

Line 19: this part is not necessary “During the course of our qualitative research…”

Methods

Line 256: definition and operationalisation of permanent disability is misplaced. It is recommended the authors define permanent disability as part of the introduction/ background.

Lines 274-289: describes how the interview transcripts were coded. This information relates to data analysis not sample/ sampling techniques. The text should be moved to the relevant subsection. 

Overall assessments of the methods

• The research design is not explicitly stated.
• The research setting is missing.
• Data analysis text is unclear. I noted the information is presented as part of the findings.
• The authors should explain how they ensured research trustworthiness. I encourage the researchers to reflect on concepts such as – credibility, transferability, dependability and confirmability.

Results

The first paragraph speaks about data collection and analysis process (pg 328). This information is misplaced. The information should be represented as part of the methods under data analysis.

Ideally, the first paragraph should present participant demographic data and followed by the actual findings inclusive of the table of themes.

Line 354: I am struggling to understand the purpose of figure 1.

Line 364: the authors introduced the grounded theory methodology in the results. This methodology should be unpacked under methods.

Line 379 – 397: speaks about data collection methods. This information should be presented under methods – data collection.

Line 398: The figure appears to be proving a summary of participant recruitment, ethical approval, data collection and data management. I am struggling to understand the purpose or significance.

Line 400: table of themes. This table is informative. The authors should present this information early in the findings. The good pages of the results were wasted describing data collection and analysis methods not the actual results.

Line 400: the subthemes may need to be highlighted or bolded for ease of reference. The flow diagram used to explain the theme and subthemes are information; to condense the manuscript, I recommend the authors don’t include them for all themes. Select one or two themes that you want to represent using this type of diagram.

Line 478: table 4 compares the findings with international literature. I propose the authors don’t use a table. The discussion section is meant for the authors to interrogate the findings in relation to literature (local and international). Having the table as part of the findings defeat the purpose of the discussion.

Discussion

I think the authors did not sufficiently interrogate the findings using literature. As a reader, I am interested to know how support can be devised for these parents?  how their anxiety can be managed? How their feeling of guilt can be managed? What is being done in other settings to respond to these types of issues.

 

Overall assessment

The manuscript addresses an important topic.

The authors need to address these gaps

• The methods omitted some important information such as the research design, data collection methods and study setting. the information though is somewhere in the paper it is misplaced.
• The findings are poorly presented. For example, the first paragraph is focused on data collection and analysis of which should have been covered in the methods.
• The discussion also requires some intervention. Many of the key themes/ findings are not judged using literature  

Author Response

Thank you very much for your supportive review. Based on your comments, the following modifications were carried out:

Reviewer 1: Abstract

Line 17: “The analysis of the semi-structured interviews…” shorten to “The findings reveal…”

Line 19: this part is not necessary “During the course of our qualitative research…”

Authors: Thank you very much for your kind suggestions. We modified these sentences following your recommendations.

Reviewer 1: Methods

Line 256: definition and operationalisation of permanent disability is misplaced. It is recommended the authors define permanent disability as part of the introduction/ background.

Lines 274-289: describes how the interview transcripts were coded. This information relates to data analysis not sample/ sampling techniques. The text should be moved to the relevant subsection. 

Authors: Thank you for your valuable observation. We agree that the definition and operationalisation of permanent or long-term care for children with severe disabilities provide essential conceptual framing and are more appropriately situated earlier in the manuscript. As such, we have relocated the paragraph beginning “In the context of this study…” to the Introduction section. This revision ensures that readers are grounded in the key terminology from the outset, which supports a clearer understanding of the study's context and aims. In addition, we slightly revised the paragraph for conciseness and clarity to fit the narrative flow of the Introduction.

We have also revised the manuscript to improve structural clarity. Specifically, the content describing the coding of interview transcripts (originally Lines 274–289) has been relocated to a newly created subsection entitled “Data Analysis”. This ensures that methodological details related to the analytical procedures are clearly distinguished from those describing sampling and participant recruitment. We believe this reorganization improves the overall coherence and alignment of the methods section.

Overall assessments of the methods

• The research design is not explicitly stated.
• The research setting is missing.
• Data analysis text is unclear. I noted the information is presented as part of the findings.
• The authors should explain how they ensured research trustworthiness. I encourage the researchers to reflect on concepts such as – credibility, transferability, dependability and confirmability.

Authors: We thank the reviewer for these helpful suggestions. In response, we have added new subsections entitled Research Design, Research Setting, and Data Analysis to clarify the methodological structure. Additionally, we introduced a dedicated subsection on Research Trustworthiness, where we address credibility, transferability, dependability, and confirmability. Relevant content previously placed in the findings section has been reorganized to improve clarity and coherence.

Reviewer 1: Results

The first paragraph speaks about data collection and analysis process (pg 328). This information is misplaced. The information should be represented as part of the methods under data analysis.

Ideally, the first paragraph should present participant demographic data and followed by the actual findings inclusive of the table of themes.

Line 354: I am struggling to understand the purpose of figure 1.

Line 364: the authors introduced the grounded theory methodology in the results. This methodology should be unpacked under methods.

Line 379 – 397: speaks about data collection methods. This information should be presented under methods – data collection.

Line 398: The figure appears to be proving a summary of participant recruitment, ethical approval, data collection and data management. I am struggling to understand the purpose or significance.

Line 400: table of themes. This table is informative. The authors should present this information early in the findings. The good pages of the results were wasted describing data collection and analysis methods not the actual results.

Line 400: the subthemes may need to be highlighted or bolded for ease of reference. The flow diagram used to explain the theme and subthemes are information; to condense the manuscript, I recommend the authors don’t include them for all themes. Select one or two themes that you want to represent using this type of diagram.

Line 478: table 4 compares the findings with international literature. I propose the authors don’t use a table. The discussion section is meant for the authors to interrogate the findings in relation to literature (local and international). Having the table as part of the findings defeat the purpose of the discussion.

Authors: We appreciate the reviewer’s insightful feedback. In response, we revised the opening paragraph of the Results section to present a clear summary of participant demographic information, including diagnostic and family background data, with references to Tables 2 and 3. The previously included content on the legal and diagnostic context of disability in Romania has been relocated to the Introduction section to better support interpretation. The Results section now begins with participant characteristics and transitions directly into the thematic findings, aligned with qualitative reporting standards.

We appreciate the reviewer’s thoughtful feedback regarding the presentation of subthemes and visual diagrams. After careful consideration, we have chosen to retain the original formatting and include flow diagrams for all three major themes. These diagrams serve as essential visual tools for readers to understand the nuanced structure and interrelations of subthemes that emerged through grounded theory analysis. Given the complex and sensitive nature of the lived experiences explored, we believe each theme warrants a separate visual representation to maintain analytical clarity and conceptual integrity. We also opted to keep the current formatting of subthemes in the narrative to preserve the flow and readability of the qualitative descriptions. We hope the reviewer will understand our intention to present the findings with both depth and transparency.

Also, we have restructured the Results section by relocating methodological content (such as coding procedures and grounded theory justification) to the Methods section under Data Analysis. The Results section now begins with a clear presentation of participant demographics and immediately introduces the thematic structure of the findings, with Table 4 (Main Themes and Subthemes) presented upfront. This reorganization ensures that the section focuses more directly on the findings and improves readability.

Reviewer 1: Discussion

I think the authors did not sufficiently interrogate the findings using literature. As a reader, I am interested to know how support can be devised for these parents?  how their anxiety can be managed? How their feeling of guilt can be managed? What is being done in other settings to respond to these types of issues.

Authors: Thank you for your insightful feedback. In response, we have expanded the Interpretations and Recommendations sections to explicitly address how parental anxiety and guilt can be managed, drawing on international literature. We also included evidence-based interventions from other contexts, such as CBT, mindfulness therapy, and structured parenting programs like E-PAtS. These additions help demonstrate how support mechanisms can be developed for families in Romania and align our findings with broader global practices.

Reviewer 1: Overall assessment

The manuscript addresses an important topic.

The authors need to address these gaps

• The methods omitted some important information such as the research design, data collection methods and study setting. the information though is somewhere in the paper it is misplaced.
• The findings are poorly presented. For example, the first paragraph is focused on data collection and analysis of which should have been covered in the methods.
• The discussion also requires some intervention. Many of the key themes/ findings are not judged using literature  

Authors: We sincerely thank the reviewer for their constructive and detailed feedback. In response, we have thoroughly revised the manuscript to address all suggested improvements:

• We reorganized the Methods section and created clearly labelled subsections for Research Design, Study Setting, and Data Collection, ensuring that all relevant methodological information is appropriately located.
• The Results section has been revised to focus exclusively on findings. The initial paragraph on data analysis has been relocated to the Data Analysis subsection within the Methods.
• The Discussion section was expanded to more robustly engage with relevant international literature.
• We incorporated targeted references related to parental anxiety, guilt, coping strategies, and support systems in other settings to critically evaluate our findings and propose applicable solutions.

Thank you very much for your thorough feedback and meaningful comments. We hope that we could improve the quality of the manuscript, and it can be accepted for publication.

Author Response File: Author Response.pdf

Reviewer 2 Report

Comments and Suggestions for Authors

I enjoyed reading your manuscript.

The abstract gives a summary of the entire study.

The introduction/background gives a detailed information about the study in context.

The materials and methods are well laid. They showed how you went about the study with the objectives and research questions using the grounded theory to juxtapose your findings.

The study demonstrated how parents raising children with severe disabilities in Romania shared their experiences of continuous struggle, a lack of appropriate support and resources, stigma, and a lack of understanding about living with a disabled child in society. It also showed burden such as caregiving, financial stress, social isolation, and navigating healthcare and educational systems.

Your work is a good article for publication. I however, have the following recommendations to be addressed:

 

1. Most of your references in the background section are quite old. Please try to get references not older than 10 years
2. You will need to work on the in-text references e.g., see lines 38, 39, 41and 43

E.g., Dr. Falus

E. Belényi

Belényi E. H

3. The sentence on lines 59 and 60 is incomplete “These attitudes towards can lead to exclusion, marginalisation, and a lack of opportunity”.
4. Lines 99 and 100, the sentence “Epigenetic changes are modifications to gene expression that occur without altering the underlying DNA sequence” requires a reference.
5. On line 214 “school rooms” Do you refer to classrooms, library/lab, staff common room or office? Please specify.
6. Table 2: Characteristics of the study participants on line 316 and Table 3: Participants on line 326 should be captured as part of the results
7. From line 328 to line 399 should be captured under materials and methods
8. For example, quotes on Lines 436 to 450 were not italic and were not indented. It will be good to indent all direct quotes from your participants
9. At the reference section on lines 666 to 668: E.g., Dr. Falus, A., Dr. Melicher, D., & Dr. Purebl; Kindly take the title “Dr” from the author names

Author Response

Thank you very much for your supportive review. Based on your comments, the following modifications were carried out:

Reviewer 2: I enjoyed reading your manuscript. The abstract gives a summary of the entire study. The introduction/background gives a detailed information about the study in context. The materials and methods are well laid. They showed how you went about the study with the objectives and research questions using the grounded theory to juxtapose your findings. The study demonstrated how parents raising children with severe disabilities in Romania shared their experiences of continuous struggle, a lack of appropriate support and resources, stigma, and a lack of understanding about living with a disabled child in society. It also showed burden such as caregiving, financial stress, social isolation, and navigating healthcare and educational systems. Your work is a good article for publication. I however, have the following recommendations to be addressed:

Authors: Thank you very much for your kind feedback. We hope we could improve the quality of the paper based on your suggestions.

Reviewer 2: Most of your references in the background section are quite old. Please try to get references not older than 10 years

Authors: Thank you very much for your kind suggestion. The references have been revised and refreshed.

Reviewer 2: You will need to work on the in-text references e.g., see lines 38, 39, 41and 43

E.g., Dr. Falus

1. Belényi

Belényi E. H

Authors: Thank you very much for your kind notification. We checked these in-text citations and corrected them.

Reviewer 2: The sentence on lines 59 and 60 is incomplete “These attitudes towards can lead to exclusion, marginalisation, and a lack of opportunity”.

Authors: Thank you very much for your kind notification. We completed the sentence (it referred to people with disabilities).

Reviewer 2: Lines 99 and 100, the sentence “Epigenetic changes are modifications to gene expression that occur without altering the underlying DNA sequence” requires a reference.

Authors: Thank you very much for your kind suggestion. We added a reference to this sentence.

Reviewer 2: On line 214 “school rooms” Do you refer to classrooms, library/lab, staff common room or office? Please specify.

Authors: Thank you very much for your kind remark. We refer to classrooms.

Reviewer 2: Table 2: Characteristics of the study participants on line 316 and Table 3: Participants on line 326 should be captured as part of the results

Authors: Thank you very much for your kind suggestion. We replaced these two tables to the Results.

Reviewer 2: From line 328 to line 399 should be captured under materials and methods

Authors: Thank you very much for your kind suggestion. We restructured this part too.

Reviewer 2: For example, quotes on Lines 436 to 450 were not italic and were not indented. It will be good to indent all direct quotes from your participants

Authors: Thank you very much for your kind suggestion. We reformatted these quotes.

Reviewer 2: At the reference section on lines 666 to 668: E.g., Dr. Falus, A., Dr. Melicher, D., & Dr. Purebl; Kindly take the title “Dr” from the author names

Authors: Thank you very much for your kind suggestion. We removed the title in each cases.

Thank you very much for your thorough feedback and meaningful comments. We hope that we could improve the quality of the manuscript, and it can be accepted for publication.

Author Response File: Author Response.pdf

Reviewer 3 Report

Comments and Suggestions for Authors

Deat Author/s

Thank you for the opportunity to review this manuscript. I believe that it will make a meaningful contribution to the existing literature, especially as it addresses enduring and highly relevant topics—such as the experiences of parents of children with disabilities.

Author Response

Thank you very much for your supportive review.

Reviewer3: Dear Author/s

Thank you for the opportunity to review this manuscript. I believe that it will make a meaningful contribution to the existing literature, especially as it addresses enduring and highly relevant topics—such as the experiences of parents of children with disabilities.

Authors: Thank you very much for your valuable and supportive feedback.

We hope that you agree on with the modifications requested by the other reviewers, and it can be accepted for publication.

Author Response File: Author Response.pdf