PEER REVIEW HISTORY BMJ Open publishes all reviews undertaken for accepted manuscripts. Reviewers are asked to complete a checklist review form (http://bmjopen.bmj.com/site/about/resources/checklist.pdf) and are provided with free text boxes to elaborate on their assessment. These free text comments are reproduced below. TITLE (PROVISIONAL) AUTHORS ARTICLE DETAILS Disaster anxiety and self-assistance behaviors among persons with cervical cord injury in Japan: A qualitative study Takahashi, Kyo; Kitamura, Yayoi VERSION 1 - REVIEW Ayako Okochi-Ide Department of Community Health Nursing, School of Medicine, Yokohama City Univer sity JAPAN 09-Oct-2015 Please specify and state clearly your research question in the introduction section. Also, please explain why your research topic is important from the viewpoints of public health or other health disciplines. Please describe what the definition of disaster preparedness is and how it is related to the anxiety. In the method section, please clarify the representativeness of this sample in the CCI population. In the part of the data analysis, please explain how you can interpret the relationship between anxiety and buffer, since this research is a qualitative study and not a quantitative one. Please address what you stated in the COREQ checklist, e.g. the use of NVivo. Please describe what kind of questions you asked in the interviews to clearly show that your codes and themes are not derived from your story, but from the analysis of data. In the results section, please re-check the number of your study participants. Please explain the reason why you considered you can include persons other than CCI in the method section. In the table 1, if you have any other information regarding participants ADL level, the level of injury, housing, the condition of public transportations, etc., please show those. Otherwise, you need explain why you showed the toileting methods elaborately in this research topic. Please show themes, subthemes if possible, in the table. In the discussion section, there are parts that are not related to your results. Please explain what the originality is and how your findings are of use, based on the results. Dr Suzanne Phibbs School of Public Health Massey University New Zealand 14-Oct-2015
Thank you for the opportunity to review this manuscript. There is limited research that addresses disaster preparedness among disabled people who have complex needs. The focus of this paper, disaster anxieties, preparedness actions and concerns amongst 16 Japanese individuals who have cervical cord injury, provides an important contribution to the literature in the area of disability and disasters. Participants expressed anxieties about health management following disaster, while resilience was associated with storing needed items, staying in a safe place and having reliable caregivers. This research is well designed, presented and relevant to people who work in the disaster, medical and rehabilitation fields. Themes identified in this research, such as an concerns about evacuation centres, a preference for remaining at home and the importance of community networks, also validated findings from my own research which explored the experiences of disabled people during the greater Christchurch Earthquakes in New Zealand in 2011. The evidence base for disaster preparedness and response among disabled people is still in its infancy. For this reason qualitative research involving thematic analysis is an appropriate research method for this subject area. Recommended alterations to the manuscript. In the introduction the authors link disability inclusive disaster preparedness and response to the UN Convention on the Rights of Persons with Disabilities. It would also be useful to link disaster preparedness for vulnerable groups to the section on disability in the Sendai Framework for Disaster Risk Reduction (UNISDR, 2015). Abstract Bullet point line 42 insert the words the researchers after the word enabled so that the sentence reads: The use of qualitative methods enabled the researchers to illustrate the anxiety Methods section paragraph on Participants line 42: change the word participant to the word potential so that the line reads: e-mail to 14 potential candidates and asked about their participation. Page 9 final paragraph lines 49-53: Combine the following sentences: Another theme was experience of failure. Those with experience of failure, such as incontinence, carefully prepared items. Although experience of failure could increase the anxiety about their health condition, it also prompted storing needed items in case of a similar situation which buffered anxiety. Suggested alternative phrasing: Another theme was experience of failure. Although experience of failure, such as incontinence, could increase anxiety about their health condition, it also prompted preparedness actions including storing needed items in case of a similar situation which buffered anxiety. Page 9 line 54, include information about what information from peers increased anxiety. Suggest the following alteration to the sentence: Similarly, information from peers about individual experiences of disaster increased participant anxiety about their
health condition Page 11 line 43: Change the words comes with to the word supports so that the line reads: However, in reality, whether a caregiver supports a person who has Page 12, line 6 change the word to to the word of so that the first sentence reads experiences of disaster preparedness Page 14, line 45, last sentence: change the words we did not consent patients for data sharing to we did not gain informed consent from participants for data sharing VERSION 1 AUTHOR RESPONSE Reviewer 1 s comments and answers: 1. Please specify and state clearly your research question in the introduction section. > We used the following research questions: What kind of anxious feelings about future disasters do persons with a severe disability have? and How are they actually prepared to deal with such feelings? We added this information to the Introduction (page 4, lines 12 14). 2. Also, please explain why your research topic is important from the viewpoints of public health or other health disciplines. > Persons with disability, especially those with a severe disability, such as CCI, are one of the most vulnerable populations during and after a disaster. To substantially decrease the risk of mortality for disaster victims, their particular needs should be clarified and appropriate disaster preparedness trainings should be conducted. We added this to the last paragraph of the Introduction (page 4, lines 15 18). 3. Please describe what the definition of disaster preparedness is and how it is related to the anxiety. > The first author initially focused on the participants anxious feelings about future disasters, and subsequently extracted behaviors of disaster preparedness as the buffers of such feelings. We have added this description to the Data analysis (page 5, lines 29 31). 4. In the method section, please clarify the representativeness of this sample in the CCI population. > We targeted one of the largest self-help groups of persons with CCI in the Tokyo Metropolitan area to obtain the qualitative data. However, the study results should be carefully generalized since most persons with CCI do not belong to such groups. We added this point as a study limitation in the Discussion (page 11, line 36 to page 12, lines 1 3). 5. In the part of the data analysis, please explain how you can interpret the relationship between anxiety and buffer, since this research is a qualitative study and not a quantitative one. > We first analyzed the responses regarding anxious feelings, and explored the behaviors to cope with them. We rewrote the analysis procedures with a special focus on the relationship between anxiety and its buffers (page 5, lines 29 31). 6. Please address what you stated in the COREQ checklist, e.g. the use of NVivo. > As per our response to comment number 5, we changed the information in the COREQ checklist and updated the necessary sentences in the manuscript. 7. Please describe what kind of questions you asked in the interviews to clearly show that your codes and themes are not derived from your story, but from the analysis of data. > We used open-ended questions regarding socio-economic status (age, sex, living status), disability
(timing, severity, activities of daily living, present illness, complications, devices, medicines, and care services), disaster preparedness (previous experiences, items, evacuation plans, information, and contact measures), social participation (belonging groups, community activity, and job), human resources (family, friends, caregivers, and medical staff), and social capital (community trust, sense of belonging, and community resources for a future disaster). We added this information to the Data collection (page 5, lines 13 19). We also rewrote the analysis procedures in detail in the Data analysis (page 5, lines 29 31). 8. In the results section, please re-check the number of your study participants. > We carefully re-checked the number of participants in the results section for accuracy. 9. Please explain the reason why you considered you can include persons other than CCI in the method section. > All participants in this study have CCI. To ensure the validity of our analysis, we discussed the results of the analysis with a working group for toileting issues at the National Rehabilitation Center for Persons with Disabilities, which includes researchers, business persons, and persons with CCI. 10. In the table 1, if you have any other information regarding participants ADL level, the level of injury, housing, the condition of public transportations, etc., please show those. Otherwise, you need explain why you showed the toileting methods elaborately in this research topic. > To protect the participants identities, we removed Table 1 from our manuscript. We added the information about ADL level in the first paragraph of the Results (page 6, lines 8 9). 11. Please show themes, subthemes if possible, in the table. > We have since removed Table 1; all themes are outlined in the manuscript. 12. In the discussion section, there are parts that are not related to your results. Please explain what the originality is and how your findings are of use, based on the results. > For the Discussion, we used all themes extracted from the participants words. However, as the reviewer noted, we used some information not directly related to the study results. For consistency, we removed the information regarding anxiety about pressure sores (page 9, lines 30 31) and psychological damage by the Fukushima Daiichi Nuclear Power Plant accident (page 10, line 17). Reviewer 2 s comments and answers: 13. In the introduction the authors link disability inclusive disaster preparedness and response to the UN Convention on the Rights of Persons with Disabilities. It would also be useful to link disaster preparedness for vulnerable groups to the section on disability in the Sendai Framework for Disaster Risk Reduction (UNISDR, 2015). > We agree with the usefulness of showing the Sendai Framework for Disaster Risk Reduction, which focuses on the active role of persons with disabilities in all processes of disaster preparedness, recovery, rehabilitation, and reconstruction. We have added this information to the Introduction (page 3, lines 8 10). 14. Abstract: Bullet point line 42 insert the words the researchers after the word enabled so that the sentence reads: The use of qualitative methods enabled the researchers to illustrate the anxiety > We inserted the researchers as requested. 15. Methods section paragraph on Participants line 42: change the word participant to the word potential so that the line reads: e-mail to 14 potential candidates and asked about their participation. > We changed participant candidates to potential candidates as suggested (page 4, line 34). 16. Page 9 final paragraph lines 49-53: Combine the following sentences: Another theme was
experience of failure. Those with experience of failure, such as incontinence, carefully prepared items. Although experience of failure could increase the anxiety about their health condition, it also prompted storing needed items in case of a similar situation which buffered anxiety. Suggested alternative phrasing: Another theme was experience of failure. Although experience of failure, such as incontinence, could increase anxiety about their health condition, it also prompted preparedness actions including storing needed items in case of a similar situation which buffered anxiety. > We agree with the reviewer s advice in terms of readability, and have made these changes to the manuscript (page 9, lines 6 9). 17. Page 9 line 54, include information about what information from peers increased anxiety. Suggest the following alteration to the sentence: Similarly, information from peers about individual experiences of disaster increased participant anxiety about their health condition > Following the reviewer s suggestion, we added the above information after information from peers (page 9, lines 10 11). 18. Page 11 line 43: Change the words comes with to the word supports so that the line reads: However, in reality, whether a caregiver supports a person who has > We changed comes with to supports (page 11, line 2). 19. Page 12, line 6 change the word to to the word of so that the first sentence reads experiences of disaster preparedness > We changed to to of (page 11, line 12). 20. Page 14, line 45, last sentence: change the words we did not consent patients for data sharing to we did not gain informed consent from participants for data sharing > We changed this as per the reviewer s suggestion, substituting gain with obtain (page 13, lines 28 29). VERSION 2 REVIEW Ayako Ide-Okochi Dept.of Community Health Nursing, Graduate School of Medicine, Yokohama City University, JAPAN 10-Dec-2015 [Introduction] Please specify and state clearly your research question in the introduction section. The previous research (eg. McClure LA, 2011) clearly present the researcher s focal point that relate disaster preparedness. As there are plentiful research in this study area, please show clearly what audiences should pay attentions to your research topic. Please describe what the definition of disaster preparedness is and how it is related to the anxiety and the buffers. Please explain why your research topic is important from the viewpoints of public health or other health disciplines. What point do the researchers consider the persons with CCI can represent persons with severe disabilities? Immobility? The risk of urinary tract? The dependence of electricity due to using medical apparatus (Yamamoto M)? Difficulties in self-care? Please explain the researchers point of views. Moreover, there are no epidemiology in your paper. Readers cannot get the idea of how your research topic
is important in the CCI population. Moreover, readers also cannot estimate the power of the influence of your research results among the whole population with severe difficulties. [Methods] In the part of the data analysis, please explain how you can interpret the relationship between anxiety and buffer, since this research is a qualitative study and not a quantitative one. Moreover, thematic analysis (eg. Braun & Clarke) do not possess such aspect, because it only allow researchers develop themes. Thematic map does not mean the map of the relationships between main themes. Please state clearly the number of actual participants. In the methods section, it says researchers interviewed 12 persons from Tokyo CCI group. Then researchers got contacted with the other group in Kanagawa Prefecture and recruited two members. Based on these information, readers cannot accurately get the information of the real number of your participants. Please state the number of persons whom researchers really interviewed with. [Results] As the thematic analysis has limitations, please modify statements that can be read as if researchers could find the direct influence between the themes of the anxiety and buffers. Eg. P7, l2-3. It is difficult to understand why researchers described the promoting factors, because in the introduction, researchers did not mention such aim. Due to the features of qualitative method, it is difficult to say relations: one theme promote the others; one theme increase the other theme; one theme prompt another. Please modify descriptions (p9, l2-14). [Discussion] Please modify expressions such as could buffer the anxiety (p9, l36) and the other similar expressions. Researchers can only infer such possibility. Please clarify that what caregivers mean in your discussion. Especially when discussing the availability of the caregivers (p10 l36-p11 l10), you need to differentiate paid caregivers, volunteer caregivers such as neighbors and family caregivers. Moreover, please cite the previous research in this paragraph. Suzanne Phibbs School of Public Health Massey University Palmerston North New Zealand 30-Nov-2015 I consider that the authors have addressed the comments from reviewers as requested. I have suggested a couple of minor changes to the structure of a couple of sentences. Introduction line 2. The first sentence finishes abruptly, perhaps it could be amended to read: In a disaster, persons with disabilities are prone to various problems associated with health maintenance that are generally not encountered by their able-bodied counterparts. In the section on Data Collection on page 5 line 10 change time to
times. The phrase managing the health condition tends to be overused in the article, I have suggested a couple of places where this phrase could be replaced with the phrase bodily maintenance. In the discussion section, page 9 line 23 consider changing We found managing the health condition was a chief anxiety to: We found bodily maintenance was a chief anxiety among persons who have CCI when they thought about what to do in a disaster. Again on page 10 line 2 consider changing manage their health condition' to bodily maintenance. VERSION 2 AUTHOR RESPONSE Reviewer 1 s comments and our responses: 1. Please specify and state clearly your research question in the introduction section. The previous research (eg. McClure LA, 2011) clearly present the researcher s focal point that relate disaster preparedness. As there are plentiful research in this study area, please show clearly what audiences should pay attentions to your research topic. > Our study mainly focuses on the self-assistance of persons with CCI, which has not been well investigated. As with other populations, persons with CCI must be prepared themselves to manage their own health condition during and after a disaster. We emphasized this in the last paragraph of the Introduction (page 4, lines 23 28). 2. Please describe what the definition of disaster preparedness is and how it is related to the anxiety and the buffers. > According to the UN, disaster preparedness is defined as forecasting and taking precautionary measures prior to an imminent threat when advance warnings are possible. We inserted this information into the second paragraph of the Introduction (page 3, lines 21 22). 3. Please explain why your research topic is important from the viewpoints of public health or other health disciplines. > To decrease mortality during and after a disaster, the needs of vulnerable populations should be understood and their self-assistance encouraged. This study focuses on anxiety and self-assistance measures of persons with CCI. We believe that the study results would be useful for persons with CCI, their caregivers, and their community. We rewrote this information in the Introduction (page 4, lines 13 18). 4. What point do the researchers consider the persons with CCI can represent persons with severe disabilities? Immobility? The risk of urinary tract? The dependence of electricity due to using medical apparatus (Yamamoto M)? Difficulties in self-care? Please explain the researchers point of views. > We targeted persons with CCI as they can be the most vulnerable in terms of immobility during and after a disaster. Such individuals are very dependent on environmental factors that can be destroyed by a disaster, such as the physical environment, electricity, and human resources, and this can greatly affect their chances of survival. We added the above information as reasons for selection to the last paragraph of the Introduction (page 4, lines 20 22). 5. Moreover, there are no epidemiology in your paper. Readers cannot get the idea of how your research topic is important in the CCI population. Moreover, readers also cannot estimate the power of the influence of your research results among the whole population with severe difficulties. > Using qualitative methods, we intended to describe how the participants feel about future disasters and how they react to such feelings. The study results should be generalized carefully to other populations since the sampling and analysis procedures were not conducted in an epidemiological
manner. We added this point as a limitation to the last paragraph of the Discussion (page 12, lines 6 7). 6. In the part of the data analysis, please explain how you can interpret the relationship between anxiety and buffer, since this research is a qualitative study and not a quantitative one. Moreover, thematic analysis (eg. Braun & Clarke) do not possess such aspect, because it only allow researchers develop themes. Thematic map does not mean the map of the relationships between main themes. > As the reviewer noted, we cannot identify the causal relationships among the themes by thematic analysis. We developed the themes that reflected the participants anxiety and their performed preparation behaviors. To avoid overstating, we removed the inappropriate expressions as the buffers of such feelings and inserted hypothetical (page 6, line 2) in the Data Analysis. 7. Please state clearly the number of actual participants. In the methods section, it says researchers interviewed 12 persons from Tokyo CCI group. Then researchers got contacted with the other group in Kanagawa Prefecture and recruited two members. Based on these information, readers cannot accurately get the information of the real number of your participants. Please state the number of persons whom researchers really interviewed with. > We realize now that the information was confusing. We recruited the participants as follows: 1. The president of the Tokyo CCI group 2. Twelve members of the Tokyo CCI group 3. The president of the Kanagawa CCI group 4. Two members of the Kanagawa CCI group In total, we recruited 16 participants. To clarify this, we added the above information to the participants section (page 5, lines 9 10). 8. As the thematic analysis has limitations, please modify statements that can be read as if researchers could find the direct influence between the themes of the anxiety and buffers. Eg. P7, l2-3. It is difficult to understand why researchers described the promoting factors, because in the introduction, researchers did not mention such aim. Due to the features of qualitative method, it is difficult to say relations: one theme promote the others; one theme increase the other theme; one theme prompt another. Please modify descriptions (p9, l2-14). > As per our response to Comment 6, we removed the inappropriate expressions, such as buffering and promoting to avoid overstating the concepts. 9. Please modify expressions such as could buffer the anxiety (p9, l36) and the other similar expressions. Researchers can only infer such possibility. > As the reviewer indicated, we cannot identify the interactive actions among the themes. Therefore, we removed the inappropriate expressions and revised the expressions that implied a causal relationship in the Discussion (page 10, lines 13 & 18). 10. Please clarify that what caregivers mean in your discussion. Especially when discussing the availability of the caregivers (p10 l36-p11 l10), you need to differentiate paid caregivers, volunteer caregivers such as neighbors and family caregivers. Moreover, please cite the previous research in this paragraph. > In the Discussion (page 11, lines 4 14), we mention the importance of personal relationships with paid caregivers during and after a disaster. Although volunteer caregivers are also essential, we did not have data showing their importance. We have cited a study that mentions the important role of caregivers in the context of self-care for persons with CCI. Reviewer 2 s comments and our responses: 1. Introduction line 2. The first sentence finishes abruptly, perhaps it could be amended to read: In a disaster, persons with disabilities are prone to various problems associated with health maintenance that are generally not encountered by their able-bodied counterparts.
> We agree with the reviewer s advice and have made these changes to the manuscript (page 3, lines 2 4). 2. In the section on Data Collection on page 5 line 10 change time to times. > We changed time to times as suggested (page 5, line 16). 3. The phrase managing the health condition tends to be overused in the article, I have suggested a couple of places where this phrase could be replaced with the phrase bodily maintenance. In the discussion section, page 9 line 23 consider changing We found managing the health condition was a chief anxiety to: We found bodily maintenance was a chief anxiety among persons who have CCI when they thought about what to do in a disaster. Again on page 10 line 2 consider changing manage their health condition' to bodily maintenance. > Following the reviewer s suggestion, we changed the term managing the health condition to bodily maintenance in the Discussion (page 9, line 29; page 10, lines 7 8). VERSION 3 - REVIEW Ayako Ide-Okochi Department of Nursing, Graduate School of Medicine, Yokohama City University JAPAN 24-Jan-2016 Thank you for your thorough revision. I decided your paper deserved acceptance. However, I would like to ask you to recocnsider that the previous studies of CSHCN can reinforce your research object. The concept of CSHCN includes children with a wide range of problems, such as obesity, child abuse, athma, autism, etc. Immobility is not a chief problem among a majority of CSHCN. Dr Suzanne Phibbs School of Public Health Massey University Palmerston North New Zealand 28-Jan-2016 A useful contribution to the literature on emergency preparedness among disabled people. Congratulations. VERSION 3 AUTHOR RESPONSE Reviewer 1 s comments and our responses: Thank you for your thorough revision. I decided your paper deserved acceptance. However, I would like to ask you to reconsider that the previous studies of CSHCN can reinforce your research object. The concept of CSHCN includes children with a wide range of problems, such as obesity, child abuse, athma, autism, etc. Immobility is not a chief problem among a majority of CSHCN. > Thank you very much for your constructive review. We learned a lot by your suggestive comments. We will study CSHCN to enrich and deepen our research object.
Reviewer 2 s comments and our responses: A useful contribution to the literature on emergency preparedness among disabled people. Congratulations. > Thank you very much for your gracious review. Thanks to your specific instructions and your previous work, we could improve the quality of our manuscript. BMJ Open: first published as 10.1136/bmjopen-2015-009929 on 18 April 2016. Downloaded from http://bmjopen.bmj.com/ on 7 April 2019 by guest. Protected by copyright.