Considering the traditional concept of sex in China’s official discourse and lack of social support system for sex education in China, burgeoning Internet knowledge community serves as an important forum for unprepared Chinese young parents to discuss and improve sex education. In this study, we conducted a structural topic modeling analysis of sex education discussions on Zhihu, the biggest online knowledge community in China. We found attention towards sex education are biased in China, where basic sexual terminologies are mentioned, but other important topics such as reproductive health, emotional attachment, and gender identity are insufficient or even absent, failing to fulfill the goal of Comprehensive Sexuality Education (CSE). This study paid special attention to gender differences in discussants, expected educators, and expected receivers of sex education. Findings show that boys are not considered as important sex education objects as girls, although many of them suffered from sexual assault and sexual diseases. They are always mentioned as roles that offend women rather than promoting or protecting themselves through sexual knowledge. Most discussants and expected educators of sex education are women, reflecting men’s lack of attention to sex education issues as both individuals and fathers. Since the reform and opening up in China, the sexual values and behaviors of Chinese young people have undergone great changes . NumerouAlthough the academic world has reached a consensus that sex education in China is essential, there is still a lack of constructive perspectives on how to carry out sex education in the Chinese context. Sex education in China’s public education system seems unlikely to improve in the short term. As early as 2011, the Program of Action for The Development of Chinese Children (2011–2020) proposed to “integrate sexual and reproductive health education into the compulsory education curriculum system”, but, in reality, it is difficult to systematically carry out or openly discuss sex education in the education system. Due to the traditional conservative social and cultural background of sex in China, Chinese authorities often avoid directly mentioning the term “sex education” . Many scConsidering the traditional concept of sex in China’s official discourse and the uneven educational resources among different regions, the family should be regarded as a more promising place for sex education in China today. A group of notable data shows that, nowadays, more than 90% of Chinese parents are aware of the importance of sex education, but only 62.04% will take the initiative to give sex education to their children . ConsideIt is not surprising that parents are usually not well-prepared to provide a complete education about sex for their children . HoweverThis study aims to characterize Zhihu users’ discussions towards sex education by looking into the distribution of themes. Special attention is paid to gender differences reflected in the discourse of sex education discussions. This is because gender difference is an important component of the Chinese traditional gender concept, which is merged and collided with the increasingly open sexual concept and the rising gender equality consciousness. Therefore, it has repeatedly become a heated topic in public sphere. To be specific, we pay attention to the gender composition of discussants, implementers, and receivers of sex education in the discussions and their preference of sub-topic of sex education. On this basis, we analyze the limitations of individuals’ recognition toward sex education and provide constructive suggestions, in order to promote a more comprehensive, systematic, and healthy sex education in China.According to social constructionism, sexual behaviors with physiological similarities may have different social and subjective meanings . TherefoBecause of cultural background, development stage and many other reasons, sex education as a whole has not been systematically carried out or openly discussed in China. Since “reform and opening up”, among the more than 30 documents concerning sex education have indicated that few Chinese officials directly mention “sex education”, instead, they refer to “puberty education”, “hygiene education”, and “health education” [As early as in 2011, the Program of Action for The Development of Chinese Children (2011–2020) has proposed to “integrate sexual and reproductive health education into the compulsory education curriculum system” . Even inHome has been considered a promising place for sex education, especially in China. Some scholars believe that parents are the most influential people in sex education, and whether parents have a positive attitude towards sex education will affects their children’s enthusiasm in sex education learning at school ,13. WhenSome studies have found that there are obvious gender differences in the implementation of family sex education, which is mainly reflected in the two dimensions: educator of sex education (father and mother) and receiver of sex education (boys and girls).Because of some social norms and stereotypes, men who need to support the family are often considered to be not giving full play to fatherhood in family education , as wellIn China, male adolescents are more likely to talk to their fathers, while female adolescents are more likely to talk to their mothers . In a kiAccording to the Technical Guidelines for International Education, both boys and girls should receive a comprehensive sex education (CSE), which covers the following areas: people’s understanding of the body and the relationship between people themselves and the body, emotional attachment and love, biological sex; gender, social gender identity, sexual orientation, sexual intimacy, sexual pleasure, and reproduction. In reality, however, topics such as sexual health are mainly targeted at girls rather than boys . A SlovaIn addition, there are differences in the way and purpose of sex education for boys and girls in families. Research conducted in Beijing has shown that boys are less embarrassed than girls in discussing sex with their parents . As girlSome scholars have pointed out that in most cases, parents are not prepared to provide their children with a complete sex education . In factIn developed countries, social support is an important force for family sex education and health education. The support channels usually include community member training, media publicity, and influencing public policies . This kiChina’s rapidly emerging Internet community is expected to offer more help to parents in response to the limitations of social support for sex education in the country. According to some surveys, a significant proportion of the public use “user-generated content” (UGC) social media to seek and share health-related information and exchange social support in Internet communities, including not only Twitter, Facebook and other common social media, but also Yelp, Reddit, and Yahoo, and other knowledge communities . The IntOnline knowledge communities (OKC) are very popular on the Internet in China in recent years. Such platforms, which combine “knowledge sharing” and “online social”, have indicated the era of mass knowledge production . DiffereStudies have confirmed that online knowledge community can not only meet users’ needs for searching relevant information, but also provide users with social support and emotional needs . A studyThis study explores the current discourse of sex education in China based on the Zhihu users’ discussions, with the purpose of understanding their reflection and expectation of sex education.We pay special attention to the impact of gender differences on the sub-topics of sex education in China. Gender differences are reflected in participants, implementers, and receivers of sex education. We hope to explore which gender has become the main force in constructing the current discourse of sex education, which gender is regarded to be responsible for China’s sex education, and which gender are expected to be more educated in sex education. In this case, the framework deviation of sex education caused by gender differences is observed in particular.To be specific, this study aims to address the following questions:RQ1: What are the characteristics of the gender distribution of actors  in the discussion of sex education on the Internet?RQ2: What are the themes of sex education reflected in the discourse of sex education discussion on the Internet?RQ3: What are the themes of sex education associated with the gender of actors ?Launched in January 2011, Zhihu is a Chinese Internet Q&A forum that allows people to share knowledge, experiences, and insights with original content, similar to Quora. “Zhihu” means “know”, and as a comprehensive knowledge sharing community, it has established a community-driven content realization business model, covering topics in science and technology, business, film and television, fashion, culture, and other fields. At present, Zhihu has established diversified media forms including text, video, and live broadcast. https://report.iresearch.cn/report_pdf.aspx?id=3197, accessed on 13 January 2022).According to iResearch data, Zhihu users have a good educational background, among which 80.1% have a Bachelor’s degree or above. During the same period, only 20.4% of China’s Internet users have a Bachelor’s degree or above, and TGI (TGI = proportion of Zhihu users with a high degree/proportion of Internet users with a high degree × 100) is as high as 392. According to the analysis, users who receive better education tend to have a broader vision and a stronger need for knowledge and cognition, and, at the same time, the high-quality user group is also the guarantee for Zhihu to produce a large number of high-quality contents , and Zhihu users can discuss about a topic they are interested in. The platform ensures the quality of discussion by authenticating the personal identity of users, properly making them anonymous or real-name, folding answers, etc. At the macro level, Zhihu organizes discussions through a “topic-question-answer” structure, in which topics undertake the function of categorizing discussions. Users can categorize questions under one or more topics by adding tags when or after they raise questions. In the topic interface of the website, the system displays popular discussions, essential discussions, and new questions to be answered. The hot discussion refers to the most popular answer and its question currently, the classic discussion refers to the answer and its question with high recognition during the existence of the topic, and the waiting answer refers to those questions with few answers and still needs to be further discussed by users.According to statistics, now the topic of “sex education” on Zhihu has 93,808 followers and 7529 questions. On the platform, the topic of sex education is usually defined as education about human reproduction, livelihood, physiological needs, coitus, and other aspects of sexual behavior. The process of creating life is generally described in stages, including conception, embryo and placental development, gestation, and childbirth. In addition, sexually transmitted diseases (STDS) and their prevention and contraception are also covered. The education of sexual physiology and sexual psychology knowledge for teenagers is also an important part, including anatomical knowledge of male and female reproductive organs, physical changes during puberty, the process of procreation, moral education of sex, family planning, eugenic knowledge, etc.https://www.zhihu.com/api/v4/), grabbing the “Essential discussion” column under the sex education topic, which is more representative than “hot discussion” and “waiting for the answer”. The data were collected on 18 January 2022, and questions which had been collected in “Essential discussion” before the date were acquired. We got 102 unique questions and went further into the questions screen to capture the answers to these questions. For an overview of the above 102 Essential Questions, we display the top 10 of those questions and their English translation in descending order of the number of answers in To overview “sex education” under the topic of discussion on Zhihu, we use the Python to obtain access to Zhihu API  in the discussion of sex education on Zhihu. We used the following methods to count and classify the gender of each actor in the answers.When grabbing answers, the server also returns the author information for each answer, including whether the author is anonymous, individual or institution, and gender. In this process, we counted all the non-anonymous accounts and documented their gender. We conducted keyword recognition on the answer text and counted the number of words related to motherhood (N_m), such as ‘my mother’, ‘mother’ and ‘mom’. Also count paternity words (N_f), such as ‘dad’, ‘father’, ‘daddy’. The gender ratio was obtained by calculating r = Log(N_m/N_f). If r > 0, the answer emphasizes motherhood, and if r < 0, the answer emphasizes fatherhood.We conducted keyword recognition on the answer text and counted the number of words related to the girl (N_g), such as ‘female’, ‘woman’, ‘girl’, ‘female students’ and ‘daughter’. Boy-related words(N_b) are also counted, such as ‘male’, ‘man’, ‘boy,’ ‘male students’ and ‘son’. The gender ratio was obtained by calculating r = Log(N_g/N_b). If r > 0, and it indicates that girls are more frequently addressed in sex education, while r < 0 indicates that the boys are more frequently addressed.The topic model is a statistical model of natural language processing developed for uncovering the hidden semantic structures within large corpora. It has been frequently used in web text analysis and has become increasingly popular in social science research , and theIn this study, we used the newly created Structural Topic Model (STM) to extract the latent topics in 48,671 answers of the 102 Essential Questions. The appropriate value of k (the fixed number of topics) for a given corpus is user-specified, without an absolute “right” answer , which mSTM allows us to add a theme prevalent covariate into the model to analyze how specific variables affect the distribution of themes. We add the gender of each actor  into the model to explore:When discussing sex education in China?What framework do male and female discussants prefer respectively (Q3a)?What framework are preferred respectively when the educated are boys and girls (Q3b)?According to the statistics of actors, there are 19,749 non-anonymous individual users who participate in the discussion of sex education topics, including 10,307 female authors and 9442 male authors; in terms of emphasis on paternal and maternal duties, 7226 authors emphasized maternal duties, 2430 emphasized paternal duties, and 39,015 did not explicitly emphasize paternal or maternal duties. In terms of the attention to girls and boys, 12,071 responses put more emphasis on sex education for girls, 6590 on sex education for boys, and 30,010 showed no gender emphasis.The main topics include teenage love, sexual enlightenment, sexual health, academic discussions, sex crimes involving minors, sexual-related social norms, and crimes involving children. The theme sexual enlightenment takes the largest proportion, which mainly discusses basic concepts related to sex, such as menstrual flow and concepts about romance. This topic is closely related to the family context, including related words to childhood, family, and hometown.sexual health and teenage love account for about 17% each. The former mainly introduces concepts such as sexual organs and sexual concepts from the perspective of sexual knowledge, and under these themes related diseases and their prevention measures were also mentioned. The latter mainly discussed the love relationship between teenagers, especially in the conservative Chinese school context. This discourse expressed the high praise for good learning in Chinese middle schools and the negative attitude towards love among teenagers. Although teenage love and sexual enlightenment seem to overlap, they show different emphases. The theme of teenage love focuses on the disapproved romance and its hindrance to good learning. In contrast, the theme of sexual enlightenment takes place in the family context and involves more sexual enlightening concepts, such as lingerie and menstrual flow.In addition, sex crimes involving minors and sexually related social norms account for about 14% respectively. The former mainly focused on juvenile-related crimes and protection issues, and the age of 14 was emphasized as a special time point for sexual crimes stipulated in Chinese laws. The latter mainly discussed gender issues in social life, such as whether boys can be taken into women’s toilets or bathrooms by their mothers, and appropriate social distancing between cousins of the opposite sex. The topic with the smallest percentage was crimes involving children. In this topic, several news events, investigative reports, and literary works are cited to discuss juvenile protection, some of which are related to sexual crimes.In addition, As for Theme 4, we looked into the original texts, and found many keywords came from academic references as author names or headline words. In other words, it shows the discussants’ efforts of introducing academic evidence into online public discussions. Considering Zhihu’s role as a public forum, citations are quite unusual and serve as scientific resources for sex education discussions. Even if the volume of academic quotes is rather limited, they provide chances for future exploration and conversation. The keywords in Theme 7 show a similar pattern, but they come from news reports rather than academic research. These words indicate respondents’ intention to take minor-related sex crimes into a broader background of minor protection, which seems to be common sense in developed countries, but can be regarded as an enlightened mind in the conservative China context, where many victims do not seek legal remedies for the sake of ignorance and shame.We took the variable of whether sex education discussion focuses more on boys or girls as a covariable and analyzed its influence on the topic popularity. The results  showed tWe took the variable of whether sex education discussions focus more on paternal and maternal duties as a covariable and analyzed its influence on the topic popularity. The results  showed tAs can be seen from the Framework refers to the internal structure hidden in the text and maps the ideas by which these materials are organized. Based on these structures and ideas, the text can select, emphasize, and exclude certain aspects of information. In the social sciences, the essence of framing is considered to be a selective reconstruction of reality by individuals and organizations, as well as a selective expression or emphasis of facts, which often means giving a problem a different definition, solution, or causal relationship . Based oThe sub-topic of sex education is biased and has deficiencies, which does not meet the requirements of Comprehensive Sexuality Education (CSE) mentioned in the UNESCO Sustainable Development Goals. According to International Technical Guidance on Sexuality Education (ITGSE), CSE’s requirements are as follows: (a) the understanding of, and relationship to, the human body; (b) emotional attachment and love; (c) sex; (d) gender; (e) gender identity; (f) sexual orientation; (g) sexual intimacy; and (h) pleasure and reproduction. Sex education in China is not evenly distributed in the above-mentioned aspects.If we re-examine the seven topics discussed above in light of this ITGSE framework, we will find that the eight key concepts of this framework have many congruences with the STM results. For example, “teenage love” (Topic 1) is relevant with “(b) emotional attachment and love”; “sexual-related social norms” (Topic 6) focuses on “(d) gender” and “(e) gender identity”; and “sexual enlightenment” (Topic 2) can be related to all the eight concepts. It appeared that “sexual enlightenment” and “sexual health”, the two topics which we drew from Zhihu data, matched the most with ITGSE framework. This to some extent can tell that young parent Zhihu users had already focused and not done bad in these two parts of Comprehensive Sexuality Education (CSE). In addition, according to our data analysis, in Topics 2 and 3, more girls and motherhood part were mentioned by female authors.When we tried to find out about the related parts with boys, fatherhood, and male authors, it came out that the most corresponding key concept of ITGSE framework is “sex”. It is the same with the literature review above where former research discovered that boys are more directly taught about sex itself while girls are more often the audience of a more comprehensive sex education, particularly on how to protect themselves.Although the STM analysis based on Zhihu data cannot be specified to the very eight concepts of ITGSE framework, the two structures are more or less corresponding with each other. Moreover, with this framework, we could see the gender difference of sex education conducted in today’s China—exactly what we mainly talked about in this article. It is possible to say that similar results could make our discovery more credible.Compared with the expectations for sex education in ITGSE, some expectations are missing in the seven topic clusters in this study. Taking relationship management as an example, relationships may affect mental health, but the current discussion is still limited to reproductive health. In addition, a homo-sexual relationship is not stable in the clustering results when there is not enough information on sexual minorities and their health risks. It reflects a relatively conservative social environment in China that confirms the claim that traditional sexual values do not easily attach importance to content unrelated to fertility and social stability . Issues After presenting the Top10 of the Essential Questions in descending in , we shouBasic gender norms are still the controversial focus under the topic of sex education. With the exception of some questions from a holistic perspective, most of the questions are related to women, and the only one that had a male orientation is the fifth “how do you view the behavior of some mothers bringing their little boys into the women’s locker room to change clothes?”. From an educator’s point of view, the critique of mothers and fathers is balanced on this issue. Many of the discussants blamed the mother for poor parenting, but, at the same time, many discussants were acutely aware of the deeper problem of a lack of paternal responsibility. That is, because fathers have less time to take care of their children, mothers have to take their boys into the ladies’ room because there is no one else to look after them. Many mentioned “widowed parenting” in their answers, arguing that fathers’ educational responsibilities must also be addressed.STM analysis also confirms that boys are not considered as important sex education objects as girls. In most topics, boys are mentioned less than girls, which is consistent with the empirical research twenty years ago in Shanghai . This alEven in the topics like social norms, boys are mentioned as roles that offend women rather than promoting or protecting themselves through sexual knowledge. Boys do not receive enough targeted knowledge for their gender. In fact, boys also face sexual assault and sexual diseases. However, such risks are yet less-represented in today’s China. Even in a heterosexual relationship, males should be responsible for healthy relationships and the well-being of their partners. However, in current sex education, boys are exempted from this responsibility, as foreign studies have pointed out, sexual health and responsible sex behavior is even more of a target for girls . In partSTM analysis also reveals that, in Internet knowledge communities like Zhihu, most participants and discussants of sex education are women. It means the group that is currently paying attention to sex education and communicating through the Internet is mainly women. The reasons are worth reflecting on and discussing for improvement.From a macro perspective, gender differences may be a factor hindering the further development of Chinese sex education. In a society with benign interaction, the gender gap in discussion reflects social imbalance of topic attention. In some cases, this difference comes from men and women’s preference of the topic. As for sex education, which should be a field with equal coverage of both men and women, an imbalance reflects the lack of attention by men to gender issues. The reason may be similar to that of the missing fatherhood in family education. Like the lack of jobs, it is related to the stereotyped social division of labor that considers male as breadwinners . This stFrom a meso-level perspective, in a family with positive interactions, both parents should have basic knowledge on sex education and play a positive and complementary role in providing sex education to their children . Our resFrom a micro perspective, group differences in virtual community discussions are also a collection of individual cognitive differences. Women are more active, either as adult women reflecting on the lack of sex education themselves, or as mothers or potential mothers for their children’s sex education, while men’s low individual participation reflects their lack of reflection. The deficiency also shows the lack of male willingness to participate in sex education, consistent with the absence of fatherhood in children’s sex education ,30.In addition, the competing discourses between topics under the topic of sex education give us some thought about discussion in the online knowledge community. From the “Top10 of the Essential Questions in descending order of the number of answers ” and “ThDue to the limited carrying capacity of the public agenda, agenda-setting is a zero-sum game , in whicAs an online knowledge community serves as an important forum for young Chinese parents to discuss and improve sex education, the bias in topics and gender roles in discussions may raise the uncertainty of future sex education in China, by reflecting and reinforcing misleading opinions. Although it can be assumed that adults willing to participate in online sex education discussion have higher awareness of its importance than the average, current discussions may fail to equip them with proper knowledge about sex education, allowing for the risk of mis-concepts passed on from generation to generation in family.This study uses an automation approach to extract the topic framework of Chinese online sex education discussions on Zhihu. We explored characteristics of the gender distribution of actors  in sex education. Overall distributions of themes, as well as different actors’ associations with specific themes, are quantitively examined.The findings confirmed that current discussions of sex education in China are biased. Basic sexual terminologies are mentioned, while broader topics such as gender identity and emotional attachment are absent. Even for topics which have drawn some attention, such as sexual health and sexual crime, there is still inadequacy in comprehensive understanding. Gender difference of sex education discussants, educators, and receivers is an important factor influencing the framework of the discussions. Girls are more likely to be targeted as sex education receivers, while the importance of education for boys is under-estimated, even when they are also exposed to sexual assault and sexual diseases in the current situation. Overwhelming female discussants and educators indicates Chinese men’s lack of engagement in sex education issues, both as individuals and fathers. We suggest that dealing with biased themes and imbalance in terms of gender roles is an essential driving force for China’s sex education improvement.Compared with other well-known platforms such as Weibo and WeChat, Zhihu is prominent for its well-educated discussants and high-quality contents. Its topic–question–answer structure allows for a large volume of sex education discussions taking place in an organized way, making Zhihu a most valuable window to look into the current situation of Chinese sex education. However, the properties above may bring some limitations for our study at the same time. Discussions above on Zhihu can better represent young parents who have a higher educational background and are more concerned about the issue, rather than representing parents in a more demographical way. It means that our discovery is relatively cutting-edge; however, the real situation of family sex education in China may be more serious than discussed in this article. In addition, analyzing Zhihu data can only focus on what people discuss, but it is difficult to focus on what and why people ignore, and their views on topics they are not aware of. In particular, the current STM analysis has difficulty carrying out cross-language analysis, which makes it impossible for us to compare discussions across similar platforms in other countries with Zhihu data. It limits the possibility for us to conduct more in-depth discussions on Zhihu data through comparison.


A range of professional figures are needed to preserve the quality of life of people with amyotrophic lateral sclerosis. This study aimed to explore the beginning of the care process as negotiated by people with amyotrophic lateral sclerosis, their caregivers, and healthcare professionals. We designed the study according to the constructivist Grounded Theory method, collecting data through open-ended, semi-structured interviews, employing theoretical sampling and constant comparison, and performing conceptual coding as data analysis. By naming the core category “off-beat interfacing”, we were able to show how the demands of the professionals concerned did not correspond to the ability of people with ALS and their proxies to process information, deal with requests, and be at ease in making decisions at the beginning of the shared care pathway. Three categories were generated: (i) navigating different paths, (ii) offering and experiencing a standard, non-personalized pathway, and (iii) anticipating decisions. The network of services must be organized according to guidelines, but must also contemplate a patient-family-centered approach that permits more personalized assistance. Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease predominantly affecting the motor neurons in the brain and spinal cord, leading to weakness of voluntary muscles . Muscle ALS significantly impacts function, causing activity limitations and participation restrictions in many settings. Various healthcare services are therefore needed to preserve patient QoL . MedicalHow health and social services are organized differs internationally. However, the involvement and coordination of a multidisciplinary care team ,10,11,12The diagnostic timelines have remained consistent over 20 years 1989–2008)  had a very negative debut because, at the first meeting, he told me: ‘now we have to think about the feeding tube.’ I told him to go to hell! We’ll think about the feeding tube”(Patient 13)“Clearly, a person who is not totally aware [of the ALS progression] imagines that they will insert a cannula here or there next week! It’s ok preparing her by telling her, ‘Look! It may be that...’. It may be! It seems it was immediate, to do it now... imminent”(CG 08)However, some HPs recognized this “anticipating decisions” as a problem for individuals with ALS.“ACP… once I used to start right away and many patients complained because… ‘I still walk. Do I want a tracheostomy? But how do I know?’”(HP 18)“The patient experienced it as a form of aggression and said: ‘That’s enough! Every time you crucify me because I have to give advance treatment directives’”(HP 26)This core category, “off-beat interfacing,” explains how care for individuals with ALS begins, as negotiated by multiple actors. Three categories inform the process: (i) navigating different paths, (ii) offering and experiencing a standard, non-personalized pathway, and (iii) anticipating decisions. During the first phase of care, HPs, on the one hand, and individuals with ALS and their CGs, on the other, relate to each other in a way that is “out of sync”.International guidelines  must be In this regard, there is a need to improve communication between HPs and individuals with ALS/CGs by recognizing that the time needed for acceptance of the diagnosis by individuals with ALS/CGs can differ, as can the coping strategies they adopt ,37. At tIn our study, individuals with ALS described how they wanted to avoid “feeling disabled too early in life”; maintaining prior roles within the family and a sense of normality is one of the preferences of patients that appears most often in the medical literature ,44,45,46According to our results, HPs felt obligated to provide a clear explanation of the course and future scenarios of the disease as dictated by symptoms and instrumental examinations. They felt compelled to identify the invasive treatments individuals with ALS would accept or refuse. While this attitude allowed HPs to understand and respect the patient’s wishes, it can fail to consider that there is a “right time” to start these conversations. Literature in this context has demonstrated that ACP tools improve the correspondence between patients’ wishes and HPs’ decisions, with HPs feeling more confident that their decisions are more likely to represent their patients’ preferences ,48. HoweIt should be noted that recent Italian legislation, namely the law on informed consent and advance directives  effectivACP discussions with HPs about care and treatment options are crucial  and indiIt is clear that our findings and the resulting practical implications call for patient-family-centered care . PatientMoreover, some HPs in our study stated that the presence of the palliative care team is crucial. A palliative care approach would benefit the entire care process, as it helps patients overcome the feeling of loss they experience with the disease ,72.This study considered the beginning of the care process for individuals with ALS and their CGs through the interplay of different perspectives. Some methodological limitations should be noted. In terms of the value of the information provided by individuals with ALS and their CGs, a recall bias in some of the participants may be present, given the mean [period?] from diagnosis. Nonetheless, it was essential for us to leave space and time for those actors to process the information about the diagnosis, and to form a relationship with the services and professionals so they could have a richer experience to narrate. We have not returned the interviews to the participants for an accuracy check, or discussed our interpretation with them. However, the findings resulted from teamwork and an internal/external audit.This GT is contextual, and its results apply to our investigated settings. However, the study provides valuable insights into similar contexts . Moreover, it underlines the importance of listening to multiple actors when care dynamics need to be understood. This working hypothesis is transferable to many other care settings and processes.As a follow-up, we intend to disclose our data and findings to question the clinical care pathway as it is now, and rethink it for individuals with ALS and their CGs.The present study describes the psychosocial process concerning how care services for individuals with ALS and their CGs are commenced. HPs and individuals with ALS/CGs expressed different modalities for managing time, meeting needs, and information processing. We encourage HPs to pay more attention to the needs of individuals with ALS and their CGs. While multidisciplinary teamwork can support this, individual communication skills should be improved, exam and visit times should be tailored to clinical conditions, and discussions on end-of-life should consider the time needed to process all of the associated information and feelings. Further research would clarify how patient-family-centered care pathways can be successfully organized.


Postpartum depression (PPD) is one of the leading causes of maternal morbidity, affecting up to 18% of Canadian new mothers. Yet, PPD often remains untreated due to numerous barriers in access to care, including location and cost. Development of eHealth interventions in collaboration with patient partners offers an exciting opportunity to fill this care gap and provide effective and affordable care to new parents across British Columbia.Our aim was to determine the content and design preferences of women previously diagnosed with PPD to inform changes to the development of a web-enabled intervention for education and management of PPD.Webpage prototypes were created to mimic the web-enabled resource using findings from completed focus group research that assessed what women want in a web-enabled support resource for PPD. A convenience sample of women aged >18 years and previously diagnosed with PPD was recruited. Feedback was collected on the content and design of the prototypes via semistructured interviews and online surveys. Qualitative, inductive analytic, and quantitative methods were used.A total of 9 women  completed the interview and a majority of the survey. The following 6 themes were identified: (1) inefficacy of text-heavy layouts, (2) highlighting key information, (3) clarity/understandability of the language, (4) finding support groups, (5) validation and immediate help for feelings of isolation, and (6) helpfulness and accessibility of the resource. Each theme identified elements of content or design that were either effective or may be improved upon. Most women  favored content relating to foundational knowledge of PPD, such as symptoms and management options. The layout, language, and content were found to be generally easy to understand, clear, trustworthy, and helpful.Six key areas were identified by women previously diagnosed with PPD, as requiring focus in a web-enabled psychoeducation program. Consistent with past research, this study also found that support and enthusiasm for web-enabled programs support PPD management as an adjunct to other evidence-based treatments. Perinatal psychiatric disorders are among the leading causes of maternal morbidity and mortality worldwide, with postpartum depression (PPD) symptoms affecting up to 18% of new mothers in Canada . CurrentNumerous barriers, including social , instrumental , and structural  barriers, prevent mothers experiencing PPD and their partners from receiving appropriate management . AdditioWeb-enabled interventions  allow for the translation of psychological and other skill-based interventions via a web-based platform. Such interventions can be instrumental in targeting many barriers as they can be more accessible, affordable, and personalized, particularly in perinatal care -13. WithThere is evidence that patient partnership in research designed to develop interventions results in an improved end product given that they centralize the users’ perspectives and context, as well as their lived experiences . In a reAs a precursor to this study, Lackie et al  conducteIn this pilot phase, we aimed to engage end users by evaluating women’s feedback on webpage prototypes of PPD-related psychoeducation content that will eventually be housed within the web-enabled intervention. We hypothesize that this prototype will be overall well-received by our participants, with feedback on various aspects including visual design and content that we will employ to improve the final product.The study participants were a convenience sample of women from any community across British Columbia (BC), Canada, irrespective of city of habitation or ethnicity. The inclusion criteria were established to ensure meaningful involvement within the limitations of the study. To be eligible, the study required participants to be 18 years or older; be able to read, write, and speak conversational English; have a previous diagnosis of PPD in the last 5 years; have no current PPD symptoms; and have access to a computer/device with stable internet connection. Each participant underwent a screening phone call to ensure eligibility, including a researcher-administered Edinburgh Postnatal Depression Scale (score of <12) . IndividParticipants were a convenience sample of women in the community recruited primarily through the following 2 methods: (1) recruitment of those who had participated in the foundational focus group research project by Lackie et al and provided consent to be contacted for future research  and (2) This was a convergent mixed methods design, in which the quantitative and qualitative phases of the study were conducted separately, and the findings were combined in the interpretation stage, as described by Cresswell and Plano Clark . This mePPD-related psychoeducation content was initially co-drafted by a Web Development Advisory Committee (WDAC) that included researchers, psychologists, psychiatrists, community organization representatives, and patient representatives. The content was reviewed by each member thoroughly, and curated to be as relevant as possible to the target users based on recommendations and suggestions made by 2 patient representatives in the WDAC. This group virtually met multiple times to discuss the final content and design of the prototypes. Each member was reimbursed for their contribution. This content was displayed to emulate a web-enabled platform, including added colors and graphics . The pilAll enrolled participants completed a demographic and content survey virtually from their personal devices by following an individualized link created using Research Electronic Data Capture (REDCap) tools hosted at BC Women’s Hospital in BC, Canada . The demQuantitative analysis was conducted with the Statistical Package for the Social Sciences, and descriptive statistics, including mean, standard deviation, and frequency counts and percentages, were calculated .Interviews were virtual and semistructured, consisting of broad open-ended questions and participant-guided discussions on the webpage prototypes, and were carried out by 2 members of the research team, with 1 as the primary facilitator. The principal investigator, who is a registered psychologist, was on-call during all interviews to mediate any high-risk situations if needed. Interviews were conducted with 1 participant at a time to ensure anonymity and comfort. Each participant was given a briefing on the anonymity of the interview and was encouraged to share thoughts openly and without fear of repercussion. All participants were asked to refrain from using any personally identifying information, such as names or geographical locations, during the interview session.An interview guide was created by the research team. The interview was initiated with an open-ended question regarding their overall feelings about the content. Each participant was also asked to compare the content with previous expectations and infer relevance and usefulness based on their lived experiences. Interviews were concluded with an open question about any final thoughts. Participants were free to discuss any thoughts relating to the intervention at any point during the interview. All interviews were audio recorded and transcribed by a professional transcriptionist .Qualitative inductive analysis was conducted following the recommendations by Thorne . In vivoEthics approval (#H20-00931) was obtained from the University of British Columbia and Children’s and Women’s Research Ethics Board. Written informed consent was obtained from all participants prior to participating. The confidentiality of the participants was maintained at all times.A total of 9 women consented to participate in the semistructured interview and questionnaire survey . The meaNearly all participants  preferred to see “lots of content” relating to symptoms of PPD and content tailored for postpartum people . A majorNearly all participants  either agreed or strongly agreed that the information in each webpage prototype section was easy to understand, clear and trustworthy, and helpful to people experiencing PPD and their supports . The infAll participants  found that common everyday language was used in the resources and support sections, while most  found that to be true for the education section . All parAll participants were either somewhat satisfied  or very satisfied  with the content and presentation of the education and resources sections . While mEach videoconference interview ranged from 20 to 30 minutes. Using inductive analysis, we identified the following 6 themes : (1) higGenerally, participants agreed that drawing attention to key information is pertinent for future users experiencing PPD. Participants frequently identified the need to be able to “grab something useful quickly” by using stylistic techniques such as “big bold letters,” “certain lines being highlighted,” “bullet points,” and “buttons.” Multiple respondents expressed being drawn to attention grabbing cues, and felt that this was important, especially when feeling overwhelmed.I would increase the font…when you have depression and anxiety, it’s just very hard to focus on certain things…key words are almost better…bolding certain things maybe.Participant aged 38 yearsReally great use of bullet points, it wasn’t overwhelming, you could scan through it and kind of see what jumps out at you.Participant aged 44 yearsI like how it’s clear, and if I want to access something really quickly, there’s big bold letters and pictures.Participant aged 37 yearsThus, while the webpage prototypes had some attention-grabbing elements, participants noted specific techniques that can be implemented throughout the resource or enhanced further on the displayed pages.Most participants said that text and information-dense pages are ineffective, while some indicated that having all of the information available is also important. Given the identified need of information that draws attention, text-heavy pages contrast this need by diffusing attention to large areas of text. Multiple participants indicated that on some pages, “there’s a lot of text” and “it’s a bit too wordy,” and that it may be overwhelming, especially for people experiencing PPD.I would want it to be very user friendly, quickly just dive into questions that you need answered, and not a lot of red tape to get through. Often when you are in the throes of postpartum, red tape is not helpful…typically don’t have the energy for it.Participant aged 38 yearsI felt like there was a lot of information there, but I actually thought it was kind of overwhelming…long paragraph, small font, it’s hard to read. I’d probably wouldn’t read it.Participant aged 36 yearsIt’s a bit too wordy…from a marketing perspective, people only read like the first 10 seconds of something and then move on.Participant aged 38 yearsGenerally, it was agreed that “hiding the text” and giving users the choice to view it can achieve a balance. Thus, information-dense pages can be overwhelming for users, but given the importance of the information, strategies can be used to reduce overall text.Half of the participants found the language throughout clear and easy to follow, while the other half raised concerns that the language may be too technical at times and thus inaccessible for some individuals. Generally, participants agreed that common easy words should be used throughout the resource as it would increase the accessibility of the resource and simplify content for when amidst PPD.I really liked how you used a common word and then also have the health or medical word for it, because for someone like me, when I go to my healthcare provider, I feel like I can understand this. You’re bridging the gap of understanding for me.Participant aged 38 yearsI like the language and visuals. They are not medical, like difficult to read. They’re just simple. And when you are in postpartum depression, you kind of need things simplified, right?Participant aged 37 yearsThe language may not be easily understandable by the common population because it’s got some really big words…it’s very scientific.Participant aged 36 yearsIn some ways, [the language] is quite technical…some things need to be, with medication, it needs to be in formal language but maybe others don’t need to be so formal.Participant aged 36 yearsAnother participant acknowledged that English being one’s first language may limit the ability to determine the clarity of the language for users who speak English as a second or more language.With English as my first language…I thought [the language] was quite straightforward. I found any time you had short forms or abbreviations, I could find it right away.Participant aged 38 yearsThus, participants agreed that language should be accessible to all individuals, but complex language may be incorporated alongside it.Generally, participants stated that information on how to find existing support groups should be highlighted in comparison to how to start a support group, which may be less relevant to individuals currently experiencing PPD.Community support group piece is probably not that relevant to me, just because I know I wouldn’t do that.Participant aged 38 yearsI feel like if somebody has PPD, it’s a lot for them to start to run a support group. For me, what would have been more helpful is being able to link with community support groups…you wanna make an equal amount or more space to finding a support group.Participant aged 44 yearsI didn’t particularly think running a support community group was at the forefront of most people going through PPD’s mind.Participant aged 36 yearsSome also noted the challenges and nuances of starting community groups.It can feel really overwhelming to try to start your own…The idea of starting your own group feels really inaccessible.Participant aged 44 yearsTo me, [the content] kind of seemed to gloss over the importance of needing qualified people to run a group like this…Having just that trained facilitator who knew how to allow people to talk in a healthy way, I think that made a huge difference.Participant aged 38 yearsThus, participants found starting a community group lower in priority and feasibility, and suggested instead to include more information regarding finding a support group.Most participants indicated that feelings of isolation should be further addressed by sharing others’ experiences or providing immediate contacts. Overwhelmingly, participants emphasized the need for connection and validation for individuals experiencing PPD, for example, through “blog stories” or by adding a “more humane angle to [the content]” in order to remain hopeful.Just hearing other people articulate their mental and emotional state…was so helpful…so you don’t feel so isolated. Having that basis of language of how to talk about…this is what’s happening in your brain, on a biophysical level.Participant aged 38 yearsSomething that was really helpful for me was connecting with other people that had postpartum depression…who can tell you there’s hope at the other end.Participant aged 27 yearsI’d like to see some testimonies, some real-life people sharing stories…that’s really comforting to people as well…makes it more human and less clinical.Participant aged 36 yearsYou want something that helps them feel like there’s some positivity at the end of this, like there’s a light at the end of the tunnel.Participant aged 44 yearsMany also noted having easy-to-find contact information for the immediate need of an individual experiencing significant distress due to PPD.Usually you reach out for help when things are really bad…and you just need kind of an immediate thing to calm, bring that anxiety down.Participant aged 38 yearsSuicide prevention [phone] line on the top, on every page…having that resource handy and knowing someone will be there to catch you if you fall so you don’t really have to fall completely.Participant aged 36 yearsThus, feelings of isolation were commonly experienced by participants, and it was noted that it may be helpful to incorporate relatable stories and validation messages throughout. Moreover, providing contacts for immediate need can help for when isolation feels unbearable.Generally, participants believed that the proposed web-enabled intervention would be a helpful and accessible resource to manage PPD initially or in early stages. Many indicated that the intervention would have been “relevant and useful” when they were managing their own PPD and would recommend it to others given the content shown.In my own experience, I had a very difficult time accessing help, and something like this would’ve been really incredibly helpful for that. I think the fact that it’s kind of rarely available…and comes from a well-known place, like it’s here. It’s BC. It’s Canada, there’s a lot of weight of that behind it. It’s really accessible and…makes you feel not so alone in it, I think that’s the impression I was left with.Participant aged 44 yearsI wish I could just hand [the website] out to so many people I know, so when this is up and running…I love that I have something that I can refer to for people I know.Participant aged 38 yearsUseful…especially for people who have never experienced it, and don’t know how to or where to turn, or if they feel that they don’t want to reach out.Participant aged 33 yearsThus, overall, the content shown was well received by the participants, who noted its potential usefulness not only in their past journeys, but also for others.This study explored the preferences and recommendations of 9 women previously diagnosed with PPD for a web-enabled psychoeducational intervention. Based on their experiences, all participants generally believed that the presented webpage prototypes would be relevant and useful as an additional resource for education and early management of PPD. Several suggestions emerged as themes, including highlighting key information and increasing the succinctness and clarity of the language, as well as focusing the content on finding help and validation to increase the relevance, accessibility, and user friendliness of the presented prototype. This is in keeping with the findings of an earlier study, where Lackie et al determined that a psychoeducational tool could address unmet gaps in current PPD care . Unlike The quality assessment of web-based tools can be divided into the following 2 major aspects: content and design . Resultsall individuals at risk may not just lead to early recognition but even be preventive [existing support group, should be prioritized. In the case of PPD, when symptoms and access to care are often already prohibitive, it is important to highlight information that is likely to provide assistance in the most efficient way [Participants expressed the most preference for the content, and in particular, information relating directly to the symptoms  and management options for PPD. Several studies have identified a lack of foundational knowledge, such as recognition of symptoms, as a common and significant barrier to seeking necessary help ,31. In feventive -34. In cient way . Furtherient way . Receiviient way . ValidatIn regard to design, participants in this study unequivocally preferred a simple and easy-to-navigate layout with helpful features. Some specific suggestions included highlighting key information using typography techniques or having the option to view information as needed, rather than all at once. This is congruent with digital health information guidelines, which highlight the importance of enhancing accessibility through design considerations . To catePatient-oriented research emphasizes the importance of patient engagement to ensure high relevance, acceptance, and impact of the undertaken project . This stTo date, several web- and mobile-enabled psychoeducation resources can be easily found through search engines, for perinatal mental health or PPD alone. However, few of these have been evaluated in the literature for quality assurance purposes. Of those evaluated, the quality of information still remains low, with several sources not disclosing key elements that help validate the content, such as the sponsorship or authorship ,46. ConsWhile the findings from this study will improve the development of the web-based tool, several limitations of the study must be noted. First, a small sample was recruited due to the constraints of time and method of recruitment, which was primarily convenience sampling. Moreover, the participants were predominantly white, well-educated, and heterosexual married women. This lack of representative sampling limits the overall generalizability of the results. Additionally, participants were shown webpage prototypes in a document format created by the study team rather than a professionally developed version of the web-enabled intervention, which did not allow us to assess participant experiences with navigation. Access to the internet and internet-compatible devices was required for eligibility as we were unable to provide alternative methods of participation owing to the COVID-19 pandemic. This may have disproportionately excluded some individuals. Lastly, this study was prone to the standard limitations of online surveys and interviewing in research, including validity and reliability issues ,48.This study adds to the existing literature calling for more evidence-based web-enabled resources for PPD. A resource, such as ours, provides information about PPD and its treatment, links users to community resources, and provides information about recovery from PPD. The next steps for our research team are to conduct a study to evaluate the effectiveness of the web-enabled resource for alleviating the symptoms of PPD in a demographically diverse group of users. Eventually, it is hoped that this will be a universally accessible resource for anyone with access to the internet and a device.This study reports many specific end-user preferences of women previously diagnosed with PPD to directly inform changes to a web-enabled psychoeducation intervention. Participants generally commended on the perceived helpfulness, reliability, and user friendliness of the webpage prototypes’ content and design. They also provided thoughtful suggestions that may enhance the impact and user experience of this resource. This study also further demonstrates the methodology and importance of involving patients at each phase of health intervention development. Overall, there is continued support and hopefulness for the potential role of this intervention as an addition to existing professional care options.


Objective: This study used narrative interviewing and grounded theory analysis to discover the phases of trauma integration for Japanese women who had experienced intimate partner violence (IPV). Method: We interviewed 23 Japanese women who had experienced IPV using the Clinical Ethnographic Narrative Interviews (CENI) from November 2017 to September 2018 in Tokyo, Japan. The data from 11 participants who had achieved trauma integration using the Trauma Recovery Rubric were analyzed using a modified grounded theory approach. Results: Six phases of the trauma integration journey after IPV were discovered: (1) Chaos, (2) Burning out, (3) Focusing, (4) Challenging, (5) Deepening insights, and (6) Re-building. The survivors described the processes of exploration of themselves and their reactions to their concurrent challenges. They focused on finding ways to protect, re-discover, and re-embrace themselves by healing from physical, psychological, and spiritual distresses. They also rebuilt relationships with others and acquired knowledge and skills to achieve a new life. Notably, the primary components of their recovery processes were changes in self-perception and self-interpretation of the trauma itself and its impacts on one’s life and within oneself from multiple angles. In addition, traditional Japanese norms and gender roles, such as beliefs concerning the “ideal life of a woman” and fear of not behaving differently from others, profoundly influenced their recovery process. Conclusion: This study highlights the importance of incorporating individuals’ cultures and their phase, needs, and personal self-development timeframes when developing trauma integration interventions. Intimate partner violence (IPV) is a severe, highly prevalent international health issue. IPV is described as behaviors that exert power and control over an intimate partner using physical, psychological, sexual, and other violence types ,2. NotabThere has been an increase in scholarly attention to the need to promote positive change and enhance strength among survivors of violence. Previous studies have reported that such survivors heal by engaging in several interrelated activities. These healing activities include rebuilding self-love, reconnecting with others and the world, and increasing their sense of appreciation, hope, fulfillment, and peace. Survivors also report that processing and responding to painful feelings  helps them heal ,13,14,15n = 24), Japan (n = 24), Turkey (n = 13), and Greece (n = 14) [how IPV survivors experienced the internal changes on their road to integration and the internal changes they made along the way. Identifying and facilitating such changes is critical for holistically understanding the IPV recovery journey and can help us suggest more detailed, timely, and effective strategies that meet survivors’ needs at all stages.The Trauma Recovery Rubric (TRR) was developed to identify and classify seven types of trauma recovery pathways using data from survivors of gender-based violence (including IPV) in four countries: America ((n = 14) . These p(n = 14) . Althoug(n = 14)  suggesteMeanings and strategies for recovery are strongly influenced by survivors’ sociocultural backgrounds, such as cultural and religious beliefs on gender roles, support systems, and interpretation of violence in society ,20. JapaThe design of this study was a qualitative descriptive study using a narrative interview method conducted from November 2017 to September 2018 in Tokyo, Japan.Women who had experienced IPV in the past were potential participants in this study. Eligible participants were recruited according to the following inclusion criteria: (a) 18 to 60 years old; (b) had sufficient Japanese ability to conduct the interview. Women also had to self-identify as having been victimized by IPV or any other violence type and be separated from the abuser within the past year. Survivors who were suffering from severe mental illness were excluded from this study. According to the inclusion and exclusion criteria for this research, the directors of two IPV service centers, a non-profit support institute for single mothers and an attorney’s office that provided legal services for victims of IPV in Tokyo, as the collaborators of this study, selected and recruited eligible women from their client base. They knew their situations, backgrounds, and mental status well. Twenty-eight eligible women were recruited, and twenty-six participants agreed to this study. Of those, 23 participants completed the interview, while 3 women did not come to the interview. Using the TRR [Eligible women were recruited by the directors of the four institutes and received a brief explanation about this study using a flyer. If they were interested in the study, they were asked to contact the researcher (SK) via email. Once they emailed the researcher, they received details about this study, such as the procedure, interview method, and ethical considerations using the consent form. If they agreed to participate, they were asked to sign the consent form and return it to the researcher. After they agreed to participate, they were asked their available date for the face-to-face interview. Before the interview, the study was explained to them using the consent form once again by the researcher(s), and confirmed their willingness to agree to participate in this study. The interviews were conducted in a private room at the university or the shelters and were recorded using two digital voice recorders. The interviews averaged about 2 h (ranging from 1.5 to 3.5 h). After the interview, information regarding accessible IPV and psychological support resources and incentives (approximately 30 in US dollars) was provided. One week after the interview, they were phoned by the researcher to assess if they experienced any physical and emotional problems or changes. If they wanted help, they were referred to appropriate social resources, such as psychological health services. Social network mapping, body map, lifeline, and card sort. The social network mapping helps the participant describe all help-seeking behaviors within the social context. The body map elicits physical and psychological experiences [lifeline facilitates a retrospective overview of distress and identifies linkages between experiences and actions [card sort references a low point in the lifeline and facilitates the description and organization of physical and psychological feelings [The Clinical Ethnographic Narrative Interview (CENI) was used. The CENI was developed to gather culturally relevant illness experience, meaning, and help-seeking and then adapted for use with trauma survivors . The CENeriences . The lif actions ,28,29. Tfeelings ,31. Finafeelings ,32. Only data from eleven women classified as “integrated” using the TRR were analyzed to identify an especially detailed recovery process to integration. This study used a modified grounded theory analysis approach ,34. We eThis study protocol was approved by the Ethical Committee of the Graduate School of Medicine at the University of Tokyo (No. 11756-2). n = 11) were over 41 years old (n = 10) and working (n = 8). Most of them had graduated from a technical school or junior college (n = 7). All of them had experienced IPV from ex-husbands, and two had also experienced childhood abuse and/or sexual assault. Of the eleven survivors, eight had been diagnosed with PTSD (n = 5), mood disorder (n = 3), dissociative disorder (n = 1) and/or asthma  Chaos, (2) Burning out, (3) Focusing, (4) Challenging, (5) Deepening insights, and (6) Re-building. The women described those six categories as stages or phases they passed through on their journey to their current recovery state see . The x-aAdditionally, the time frames of each phase were not necessarily demarcated. Phases frequently overlapped with others, moving back and forth. However, all the participants finally described the integration experience and the phases mentioned above. These phases represent the progression from initial escape toward their current state of trauma integration. In the following, we present the phases’ descriptions and highlight the subthemes that characterized these phases using italics. Phase 1: Chaos. Chaos was the first phase women experienced as soon as they escaped from or were separated from their abusive partners. During the phase, they described feeling that they were in a chaotic situation, even though they seemed to be functioning. They also described feeling unsafe and disconnected from their body, mind, and social contexts. This phase was a highly tense period where they dealt with several problems following separation from their abuser, such as moving to a new place to live, managing their daily lives alone, and initiating legal divorce proceedings. The women reported that day-to-day troubles and feelings dominated their lives, leaving them no energy and time to pay attention to their internal feeling and problems. One woman said: “I didn’t know what to do, but I had to decide on an apartment and a school for my children quickly…I still don’t remember how I could deal with these things” (ID J0010). deep sorrow for losing their familiar environment, friends, and work. One woman reflected, “After leaving, I lost my house, friends, and job simultaneously. It was the most painful experience in my life” (ID J0028). They also described disappointment with responses from persons from whom they sought help. They were disappointed when they faced discrimination and rejection from parents, friends, and public officers when they sought help. Another woman said: “My parents told me, ‘…you embraced us because you got divorced and needed a place’ when I escaped to their house. I felt I was a troublemaker” (ID J0001). Women also described fears and panic of being chased by abusers and intense anxiety for the children, who were also affected by violence and separation. For example, one woman discussed their fears by saying: “A couple of days later, after escaping, my husband called me. At the time, I had no feeling except a strong fear of my husband, so I panicked” (ID J0005). In this phase, women experienced On the other hand, the women described a solid will to move forward from this chaotic situation. Additionally, ten women experienced gratitude for support from persons they sought help from and were surprised by positive changes in children soon after the separation. One woman said, “Before I left the house, I had a lot of feelings of anxiety, fear, and hesitation…but after leaving, I strongly felt I can’t come back anymore, and I have to move forward” (ID J0013). Another woman reflected, “I was so surprised that my child could sleep soundly the whole night since the day we left” (ID J0017). Phase 2: Burning out. Women experienced the phase of Burning out after several of their day-to-day living and survival needs were met, and they started to live in a safe environment. This phase was referred to as the period that they faced and struggled with the severe and numerous impacts of violence, such as their physical, psychological, and social symptoms and emotional pain. Moreover, they suffered from feeling they had become different from others or had changed significantly, referring to it as “…falling from the bridge where everyone crosses” (ID J0013). They expressed that this phase was the hardest in their life after IPV. Nevertheless, they recognized this phase was a significant and necessary step toward becoming aware of and reconsidering their habitual ways of living and thinking.a lack of confidence and high pressure to proceed onward. For example, one woman noted, “My husband used to tell me, ‘you are useless and can’t do anything’ for a long time, so I didn’t think I could decide my future by myself” (ID J0013). They experienced loneliness and isolation for facing their feelings and experiences alone. Consequentially, they did not disclose or seek help from anybody. Four women reported explosive anger toward the abusers who had changed and ruined their lives. For example, one woman stated, “I repeatedly thought why he had done such terrible things to me…I wanted to pay (him) back. I was always irritated, and it made me so exhausted” (ID J0018).Many women experienced unexplained physical symptoms in this phase, such as stomach pain, headache, nausea, palpitation, excessive weight loss, severe coldness, itchiness, or a long-lasting cough. One woman mentioned, “I was wondering what this palpitation is…and was very worried thinking that ‘I might die soon.’ I took medicine, but it didn’t work” (ID J0004). They also reported bewilderment to their child’s emotional explosion, such as aggressive behaviors, withdrawal, anger, shame, resistance to changing lifestyles, and regression due to the high stress of leaving a familiar environment and their father. One woman said, “My adolescent son started to be violent towards me because he didn’t like the situation of using a welfare service to live” (ID J0004). Another woman mentioned, “My (4-year-old) daughter … always chased me around and became insecure for 24 h. I think she exploded her suppressed trauma” (ID J0027).Additionally, eight women experienced guilty and impatient for being lethargic. They felt too lonely and exhausted to think about their problems and future. They forgot their values, blamed themselves for being unable to live their lives properly, and felt impatient with themselves for their inability to work despite wanting to. Survivors summarized these feelings, saying: “I felt I was lazy and useless for myself being unable to do anything” (ID J0017); “I didn’t have power left to think about myself” (ID J0009); and “I felt very lonely compared to my children who seemed to adapt to this situation smoothly” (ID J0027). Although they experienced these intense feelings, survivors also reported feeling suddenly powerless and sluggish. One woman described it as if “…an inflated balloon was popped” (ID J0009). They felt Phase 3:Focusing. This phase occurred when the survivors focused on internal and external causes of their distress experienced in the Burning out phase, such as their habitual ways of thinking and becoming aware of their strong desire to stay true to themselves and to change their lives. In this phase, they described living “someone else’s life” as one of the leading causes of their distress, low self-confidence, and sense of inferiority. They also noticed the persistence of gender roles in their environment, as well as in their self-expectations. For example, one woman said: “I noticed I was exhausted because I had clung to the ideal characteristics of a ‘woman,’ ‘wife,’ and ‘mother,’ such that a wife has to make three meals every day and a mother has to smile and be cheerful all the time” (ID J0027). Seven women noticed that they always cared about others’ perceptions, resulting in physical and psychological distress, such as shame, regret, and fear. For instance, another woman mentioned, “When I looked back, I always thought that ‘I have to be a good woman’ from the perspective of my parents, my husband, and the world in general. I felt like I was living according to other people’s wishes” (ID J0018). awareness that suppressing physical symptoms and psychological emotions is abnormal. To survive in a violent and unsafe environment, they tried not to feel any physical symptoms and distressing emotions, such as body pain, anger, unpleasantness, sadness, and loneliness. However, in this phase, they noticed this was abnormal and unhealthy. One woman described, “I had held tons of black stones (Kuroi-ishi) in myself, and I had tried to ignore all of them to keep a ‘normal life’ with my husband. However, I noticed that holding the black stones is not healthy for me and (that they) have to be released to the outside” (ID J0010).Survivors experienced an an awakening desire to stay true to themselves. They desired to regain their senses and to do so, and they attempted to change their circumstances. One woman said: “I became so calm after I noticed I have freedom (nobody controls me), and I naturally started to think about what I want to do, and what makes me happier and calmer” (ID J0009). Once the survivors became aware of these internal causes of distress, they felt Phase 4:Challenging. After becoming aware of the causes of their burning out and discovering their desire to change, survivors moved to the Challenging phase. The Challenging phase was described as the period in which they explored and tried to protect, re-discover, and regain sensibility, living life by healing physical and psychological distress, reconnecting with trusted others, and acquiring knowledge and skill to cope with trauma. However, survivors also simultaneously experienced new challenges, resulting in further distress. In this phase, all the women experimented with new actions to heal themselves and expand their possibilities, such as connecting with or joining a peer support group for IPV, finding or starting a job, and receiving several formal and informal  therapies. While forming connections with trusted others, such as peers, a new partner, and family, they experienced regaining a sense of security and peace with others and increasing confidence in their decision-making capacity. One woman noted, “I feel that peers are very important for me. We don’t deny our feelings and opinions with each other. I feel so easy and secure in the relationships” (ID J0025). Another mentioned, “My ex-husband used to repeatedly say, ‘You are not useful in the society,’ so I had to quit my job. In contrast, I noticed, ‘Oh, I’m very useful in society!’ when I came back to the job” (ID J0013).connections they noticed between trauma, body, and mind were described after acquiring knowledge and skills through books, classes, and peer-support groups, yielding a greater understanding of their experience and symptoms. For example, one woman said, “I didn’t know why, but sometimes I felt pain and discomfort around my uterus, and when I felt it, my tears suddenly came out. But after I recognized that I was raped, I understood that the pain in my uterus came from my trauma and emotions” (ID J0025). Moreover, the helplessness for impulsive and intense anger and fear concerning their ex-husbands and other people  who were indifferent towards, ignored, prejudiced, and discriminated against their trauma. One woman said: “I was used to thinking and living like ‘it is all my fault.’ But after I learned and recognized, ‘My trauma is not my fault,’ intense anger and hatred against the abuser and other people around me who didn’t help me suddenly came up. I couldn’t handle these painful feelings.” (ID J0025). In addition, women felt hopeless and vulnerable to unfairness, prejudice, and discrimination surrounding them by incessantly facing prejudice and victimization. One survivor mentioned, “When I started to work in a female counseling office for victims of violence, I saw my senior workers who labeled victims as ‘weak and troublesome women’ saying, ‘Victims have some faults (that cause them to be)…abused.’ I felt very sad, vulnerable, and hopeless” (ID J0005). Two survivors also described facing a core source of distress they had ignored, such as painful childhood experiences that deepened their understanding of their suffering. One woman expressed it as “…opening a locked box left alone for a long time” (ID J0017). They felt anger, helplessness, regret, chaos, and self-blame when they remembered their experience during childhood. Another woman mentioned, “I noticed my senses of shame, inferiority, isolation, and loneliness came from my childhood experience. My mother used to frequently slap and pinch me when I didn’t do what she wanted me to do. My friends said it was child abuse, but defining the experience is (still) too painful for me because I loved my mother” (ID J0018). While embracing the positive changes, survivors also confronted new types of internal conflicts and distress during this phase, and their emotions were “shaken.” For example, they described Phase 5: Deepening insights. After skills, knowledge, and thoughts were accumulated during the previous phase, survivors experienced the phase of Deepening insights. This phase was described as the period when they deepened their insights about themselves and their trauma, deciphered the meaning of their trauma and its impact on their lives, and interpreted why it happened. Such profound insights and philosophies developed gradually among some women but came up suddenly for others. By deepening their insights, survivors discovered connections between their trauma and emotions, their past and current experiences, and their body, mind, and social contexts. One woman described this phase as “…knitting together the lines that had broken apart” (ID J0025). life can’t be explained by trauma alone. Women not only focused on their misery but also remembered and appreciated the meaning and impact of pleasant times in their lives, affirming that trauma was only one part of their lives. One woman stated, “I don’t want to recognize myself as a victim because this is only one part of my life. I have experienced many happy times in my life, such as spending time with my children and doing my work” (ID J0004). Another survivor said, “I recognized that the saddest and the happiest moments were represented by one event in my life, such as the marriage with my ex-husband. So, I can’t judge my life using only one standard” (ID J0017). Additionally, the survivors expanded their perspectives toward people who had hurt them in the past, such as their abusive ex-husband and parents. They discovered different aspects of the person who hurt them by viewing these people from more distant and different angles. They recognized that the people who hurt them were not merely “bad people.” One woman said, “Looking back, I find that my dominant mother just didn’t know how to do it. I now know she raised me sternly” (ID J0009). Another said, “After I heard my father used to be abused by his mother, I feel that my father who abused me was also suffering” (ID J0017). First, women began to view their lives, including trauma episodes, from multiple angles, noticing that recognized that their trauma had been healed by trusted others, such as peers, friends, children, new partners, and co-workers. Throughout rebuilding secure and stable relationships with others, survivors felt they had been protected, healed, encouraged, and helped to confront and overcome their challenging period after GBV. One woman said: “My children, my new partner, and I discussed anything freely and equally. Those secure relationships healed my trauma” (ID J0013). Based on their newfound trust in and acceptance by others, women regained the confidence to stay true to themselves. Survivors examined their selfhood, discovering their strengths, weaknesses, and habitual thought and action patterns while trying to understand their aggressors. One woman mentioned: “It is better to think about what I want to be and not what other people expect of me. I want to focus on what kind of human being I am and how I want to live” (ID J0027). Six survivors described trying to interpret or discover why GBV happened to them. One woman stated, “I think my loneliness since childhood attracted my ex-husband (abuser) who had had similar experiences” (ID J0027). Another woman said, “I used to be controlled by my mother. Now I feel the controlling relationship just moved from my mother to my ex-husband.” (ID J0009).Survivors reconnecting with their experiences, body, minds, and social contexts. They were convinced that their physical and psychological distresses, such as persistent headaches, breathlessness, or a loss of desire to live, were associated with trauma. One woman expressed this by saying, “…my body and mind remember the trauma” (ID J0013). For example, one woman mentioned, “I feel my emotions and memories relating to the past trauma that can’t be released and handled sometimes appear as various physical symptoms” (ID J0013). Another said: “…vague difficulties, such as persistent loneliness and a lack of self-confidence, have been lasting since my childhood. These feelings were related to my experience being with my parents” (ID J0009).When survivors reviewed and interpreted their entire life, all the survivors described Furthermore, women recognized that their bodies and minds were always interconnected and that they influenced each other. One woman said, “…when I have a headache, I interpret I’m emotionally exhausted, so I try to rest or avoid the stressors” (ID J0005). Another said, “…my shoulder and back pains came from the pressure and stress of work” (ID J0028). While pondering on their entire lives and health, the survivors regained and increased the manageability and predictability of their physical and psychological distresses. They also acquired skills to cope with their distress, such as providing self-compassion with words such as “I can’t get frustrated, so don’t worry. You are doing best” (ID J0018), taking purposeful breaks, sharing feelings with trusted others, or seeking helping professionals . Phase 6:Re-building. All the women experienced the final phase of Re-building. This phase was described as the period wherein women felt they had integrated the trauma into their lives, embraced their selfhood, and gained confidence in their ability to deal with the trauma impact. During this phase, they could see an overall picture of their selfhood, believe in their strength, and look toward the future. All the women described peace of mind and appreciating life as, “My mind is now calm like the sea” (ID J0009) and “I’m very glad to be alive” (ID J0027).believed that trauma is also an important aspect of their lives. They appreciated meeting or reconnecting with trusted others. Survivors now viewed the trauma as one event in the course of life and recognized that their current life was re-constructed by trauma. One woman mentioned, “It is my life, even if it gets painful” (ID J0010). Another woman stated, “I used to want to erase the hard period of my life, but now I feel that the period is also my life” (ID J0027).First, women “the trauma strengthened me.” Survivors felt they learned essential things from their experiences and became more mature. They understood the feelings of people with similar experiences, devoid of prejudice and discrimination, and they felt they became more compassionate than before the trauma. One woman said: “I have learned a lot from the struggling period. I became a person who understands people’s feelings” (ID J0017). Furthermore, survivors believed that strongly believed in their competence and decisions. They were proud of themselves that they could overcome such a challenging period and rebuild their lives. One woman stated: “When looking back to my past, I finally overcame so many challenging things in my life. I am proud of myself and believe I can overcome anything the future holds” (ID J0010). Moreover, they firmly believed that their decisions were not all ‘wrong.’ These decisions included not only the divorce from their ex-husband but also the smaller decisions in daily life. Women reported that although they did sometimes make mistakes in life, they could always learn something from these mistakes. One woman mentioned, “I made various mistakes and sometimes regretted it, but I think my key decisions, including separating from my husband, were not wrong” (ID J0001). Furthermore, survivors embraced their lives and the fact that they had experienced trauma. They decided to live with the trauma, respect their feelings and hopes, avoid being manipulated by others, and recognize that “…it was fine to be me even if I am not perfect” (ID J0027). Survivors affirmed and embraced their way of living and were rarely influenced or shaken by other people anymore. One woman said: “I don’t mind how other people perceive me. I like myself now, even if it may seem weird to other people” (ID J0028). Another woman, who had experienced sexual violence, reported decreased shame and began to enjoy being a woman. Consequentially, these survivors started to look at the future and not the past, focusing on enriching their lives more. One woman said: “I don’t know what will happen in the future. However, I always want to look forward to making my life better” (ID J0009).After regaining confidence in their competence and decisions, women finally how survivors of IPV may experience each phase in detail. This study explored the detailed phases of the IPV recovery process among Japanese survivors, discovering the importance of self-interpretation and self-perception. This evidence suggests that one essential trauma integration skill, rebuilding relationships with others, was achieved through a deepened understanding of the trauma itself and its impacts on one’s life and within oneself from multiple angles. Although previous studies indicated more general ideas and elements regarding phases of the recovery process after many kinds of trauma, including domestic violence, community violence, war, and the loss of a family member ,16,17, tDuring the earlier stages, such as the phases of Chaos and Burning out, survivors struggled with several physical and psychological distress related to difficulties in interpreting and accepting the trauma. This phenomenon may be strongly influenced by sociocultural pressure and norms related to gender roles; beliefs concerning the “ideal life of a woman” such as supporting their husband and children; fear of not behaving differently from others; and the prejudice faced by victims of violence and single mothers after divorce in the Japanese society ,23,35. Hhow they should intervene depending on the vulnerability of the phases, especially the Chaos, Burning out, and Challenging phases. For example, in the Chaos phase, participants felt extremely tense when facing and dealing with urgent problems, such as finding a place to live, hiding from abusers, and commencing legal proceedings. Thus, they did not have the energy or time to focus on their symptoms and emotions. Prolonging these insecure and unstable social circumstances after IPV may lead to delaying internal healing and recovery [Furthermore, health professionals and care providers should pay more attention to recovery ,10. Thusrecovery . Lastly,recovery ,36,37 inThere were several limitations of this study. First, only the data for Japanese samples who achieved trauma integration were used. The previous study  indicateSecond, this study used only data from eleven women categorized as “integration/equanimity.” While qualitative analysis is not intended to be generalizable, additional samples are needed to discover if these findings are transferrable to other types of trauma survivors. Thus, an additional study with larger sample sizes and diverse trauma survivors is needed for this study’s generalizability and to discover other survivors’ unique processes.Third, the features of the participants of this study may be biased due to the recruitment method. The participants of this study were recruited by the directors of the IPV services centers; thus, they have been already connected with and supported psychologically, socially, and economically by the IPV service centers. Thus, the participants might be bio-psycho-socially healthier compared to a general population of survivors of IPV in Japan. Thus, the results of this study should be cautiously interpreted.Further studies with larger sample sizes from diverse backgrounds in multiple countries may be necessary to improve the generalization and international application of the results of this study. In addition, future studies with survivors showing other types of recovery pathways will be essential to grasp the whole picture of diverse recovery processes after IPV.This study aimed to describe detailed phases of the recovery process for trauma integration among Japanese survivors of IPV using ethnographic narrative interviews. The six phases reported for trauma integration are (1) Chaos, (2) Burning out, (3) Focusing, (4) Challenging, (5) Deepening insights, and (6) Re-building. Notably, the unique recovery processes of trauma integration among Japanese survivors were self-interpretation and self-perceptions, which may be culturally specific characteristics. We did find that the process of their exploration and challenges helped them to protect, re-discover, and re-build themselves. The results of this study should be valuable and helpful for clinical professionals and care providers of formal and informal service agencies for IPV to understand the detailed processes, especially for trauma integration among such survivors of IPV, and develop effective interventions that meet their needs, timing, and cultural backgrounds to enhance their trauma integration more efficaciously. In addition, the results of this study may be applicable to survivors of IPV not only in Japan but also the other countries; thus, an additional study with larger and more diverse populations in multiple countries may be necessary to improve the generalizability and international application of this study.