Social adaptation is often aimed at supporting autistic people, yet its specific goals may not include their actual perspectives. That is, the state of adaptation is judged based on the standards and values of non-autistic people. This qualitative study focused on autistic women’s perceptions of social adaptation and examined their lived experiences in daily life, as adaptive behaviors have often been reported as a “female autism phenotype.”M = 36.7; standard SD = 7.66). The analysis was conducted based on the grounded theory approach.Semi-structured interviews were conducted face-to-face with ten autistic women aged 28–50 years (Two core perceptions were identified: maintaining stable relationships and fulfilling social roles based on past experiences of “maladaptation.” The participants sought adaptations within a reasonable range and adjusted their balance with society to maintain stability in their daily lives.The findings indicated that autistic women’s perceptions of adaptation were based on the accumulation of past negative experiences. Further harmful efforts should be prevented. Support for autistic people to make their own choices in life is also important. Moreover, autistic women need a place where they can be themselves and be accepted as they are. This study showed the importance of changing the environment rather than modifying autistic people to adapt to a society.The online version contains supplementary material available at 10.1186/s40359-023-01192-5. Autism spectrum disorder (ASD) or autism is a lifelong neurodevelopmental condition characterized by social communication and interaction difficulties, as well as restricted and repetitive patterns of behaviors, interests, and activities . Autism Social camouflaging has recently attracted attention as one of the adaptive behavioral strategies of these “unrecognized” autistic women . Social Adaptive functions of autistic people in daily life are often examined in research and clinical situations. The Vineland Adaptive Behavior Scales, Second Edition (Vineland-II) is an internationally used scale that objectively assesses the level of adaptive behavior of individuals on intellectual, mental, or developmental disabilities . VinelanWhile social adaptation is important, and support or intervention for autistic people often aims to promote it, it is unclear what social adaptation means to them. While the adaptive functions of autistic people have been extensively investigated, the discussion is often presented from the perspective of non-autistic people, with few studies focusing on social adaptation from the perspective of autistic people themselves. It is possible that autistic people experience difficulties while maintaining superficial adaptations. It has been noted that promoting camouflaging behaviors may worsen mental health , 20, 21.Therefore, social adaptation should be examined from the perspective of autistic people. The necessity of reflecting the voices of autistic people in research has been emphasized in the previous studies , 23–25. A qualitative approach was adopted to achieve this, and data obtained from in-depth interviews were examined. Qualitative research takes the participants’ narratives and explores the way they see, understand, and experience the world from their perspective . This stRQ1: What do autistic women perceive social adaptation as, and why?RQ2: How do autistic women deal with social adaptation in daily life?RQ3: What support do autistic women need for social adaptation?M = 36.7; standard deviation [SD] = 7.66), and the age of diagnosis ranged from 17 to 36 years . None of the participants reported a diagnosis of intellectual disability. Four participants had a diagnosis of ASD, three had Asperger’s syndrome, and the remaining three had pervasive developmental disorders. Four participants also had a diagnosis of attention-deficit/hyperactivity disorder or its traits from clinicians. Three of the participants were treated for other co-occurring psychiatric conditions at the time of the interview. Two participants were employed full-time, one was self-employed, and four were employed part-time. The remaining three were unemployed; however, one managed a self-help group, and two participated in a communication program for autistic people at the hospital. All participants had some work experiences. Four participants were married, and six were single. Three participants lived independently, four lived with their spouses and children, one was in a group home, and two lived with their family of origin. Five participants graduated from university, three participants graduated high school, and one participant graduated junior college.The participants were ten autistic women. The inclusion criteria were (a) having a clinical diagnosis classified as ASD, (b) being diagnosed in late adolescence or adulthood (aged 16 years or older), (c) living in Japan and being able to speak in Japanese, and (d) without intellectual disability. Confirmation of diagnosis was done by participants’ self-report. Information on the participants is presented in Table The researcher was engaged in an autistic adult self-help group as a non-autistic staff member. Participants were contacted via a support center for autistic people, self-help groups, and online networks and recruited using snowball sampling. All referred participants were made aware that the researcher was a university-affiliated woman who conducted research with autistic women. This was done to build trust among the participants for the interview, since most of them were participating in research for the first time. Interested participants were asked to contact the researcher or contacted by the researcher through contacts, provided a brief exploration of the study purpose, methodology, and ethics, and requested to confirm that they met the inclusion criteria. The researcher answered questions from participants as clearly as possible during the prior e-mail correspondence, before and after the interview. All participants provided written informed consent prior to the study. The interviews were conducted between September 2018 and February 2019. Ethical approval for this study was obtained by the Tohoku University Ethics Committee (IRB 2018-002).M = 71.40; SD = 12.05). After the initial analysis, some participants were invited for additional interviews to check the provisional results to confirm their validity and suitability and provide further information. Two participants (participants 4 and 10) took part in follow-up interviews via an online video conferencing system. The follow-up interviews were 94 and 97 min. In the follow-up interviews, additional questions were asked regarding (a) their perception of current social adaptation condition and the reasons for it and (b) their stance on how to maintain a balance with society, as at the time of initial analysis, it was considered that there were differences among the participants. All interviews were audio-recorded using a digital voice recorder with permission from the participants, and verbatim recordings were made. People’s name were anonymized assigning letters of the alphabet, information that was less important from an analytical perspective, such as place, company name, and school names were removed from the transcripts.Semi-structured interviews were conducted face-to-face with an interview guide. To build rapport and comfort with the participants, the researcher conducted a conversation on daily topics. At the beginning of the interview, participants were asked about demographic factors, including age, diagnosis, occupation, and related topics. Subsequent questions explored the participants’ experiences and perceptions of social adaptation. The interview contained questions in the following categories: (a) experiences before diagnosis; (b) experiences after diagnosis until the present; and (c) social adaptation, such as, “What do you think social adaptation is about?,” “Do you think you are adapted to society?,” and “Is there anything you do to adapt to society?” The detailed interview schedule can be found in Additional File 1. The interviews were 54–94 min long  approach , which aFirst, all verbatim recordings were read thoroughly. Subsequently, the entire data set was divided into smaller parts and given labels that reflected the characteristics of each section. Later, the labels that were thought to be related were collected, and their relationships were examined to create categories. The relationships between the assumed categories were compared with the data to confirm their appropriateness, and the labels and category names were revised as necessary. After categories were obtained through the above process, the relationships between each category were examined, and category groups containing multiple categories were generated. For clarification, the categories created in the second step are referred to as subcategories, while groups containing several subcategories are referred to as categories. Data were analyzed using MAXQDA 2020. The categories and subcategories are presented in Table Most participants mentioned that having a connection with other people, through employment and in the community, with friends, or during leisure time, and not being in a state of social withdrawal was an essential aspect of social adaptation.Some participants felt that they could not avoid relating to other people to live in society, with responses such as “People can’t live alone, we have to interact with other people” (participant 5) and “It’s difficult, but in order to work and study, I have to interact with people” (participant 7).If I were to stay indoors and do whatever I wanted without adapting to society, I would dwell deeper into it, not be able to see people anymore, and probably end up doing and eating whatever I wanted. Finally, I think I would end up being socially withdrawn (participant 6).Many participants were motivated to relate to other people, such as one participant who expressed her desire to have close friends: “I want to have a friend that I can talk to about absolutely ordinary things when we meet” (participant 10). The reasons participants sought interpersonal relationships were not only positive but also passive. Considering their characteristics, some participants predicted that if they withdrew from social relationships, their condition would deteriorate. One participant stated:There are a lot of things that I cannot say because I feel inferior, being an autistic person. Hence, I think it is important that I can tell people what I want to say. I think that is a large part of it. It is not just being told what to do; I mean, it is an equal relationship (participant 4).In many cases, participants had been in relationships with overwhelming disadvantages; therefore, they noted the need for stable individual balance with mutual respect and benefit and without mutual strain. One participant emphasized that assertive communication and being able to express one’s true thoughts in a relationship wherein both parties respect each other would be ideal:Participant 5 mentioned that relationships should be mutually beneficial, stating, “To control one’s power in response to what the other person is asking for is one way of adaptation.” As she could not understand what the other person required, she made sacrifices without limits. Based on such self-sacrificing experiences in the past, she emphasized reciprocity in personal relationships.Furthermore, as a result of maintaining a good balance between people, participants thought that everyday life without being effected by severe mental or physical disruptions was crucial to determining adaption. Participant 2 stressed the importance of “building stable relationships in the community or the workplace without becoming depressed.”Participants frequently noted that reading the atmosphere, following rules, and being considerate of others were required for social adaptation. Participant 10 stated that “the ability to work with others in a cooperative and harmonious way without ruining the atmosphere was required.”Furthermore, reading the atmosphere differently often had negative consequences. Participant 9 noted, “In a society with detailed rules, whether you can remember to follow those rules or not is important.” As she was unaware of the rules in the past, she was bullied. She stated that “being bullied meant being excluded, so I did not adapt to society at all.”Many participants emphasized the importance of not making others feel uncomfortable, not disturbing the atmosphere of the situation, and not causing misunderstandings, which was often based on past experiences of “failure”.Some participants stated that independence, including an income from work and managing one’s own life, was vital to social adaptation. Participant 9 stated, “In the end, the most important thing for a person to be considered socially well-adapted is to have a certain amount of money and to be able to live independently.”The participants highlighted various aspects of the importance of having a job, such as economic reasons, self-image , and contribution to society. Participant 7 explained the reason she emphasized work as a process of elimination, stating, “If you are not performing well enough at your work, but you can develop relationships with people smoothly, then you can get along. I am not very good at the latter.”Participants’ responses regarding social roles varied, including work, family, school, and community. Participant 10 stated, “I think that being useful to others in a way possible, fulfilling some kind of role is a way of adapting to society. […] cooking or doing household chores for the family is an important role too.”The participants’ living conditions, including those who were married, had children, and worked, varied, and the perception of social roles were not necessarily dependent on their current situation. Participant 5 stated that fulfilling social roles led to finding her place in society: “Social adaptation is after all about how to create a balance between society and perhaps finding a place where you fit in. […] I am probably trying to find a place that accepts me now.”All participants talked about their sense of discomfort in interacting with others since childhood and problems in maintaining friendships. Moreover, although they seemed to be part of a group on the surface, they felt that they could not keep up with others, and it was often difficult for them to build close relationships. Nevertheless, many participants tried to fit in due to perceived obligation. Participant 4 noted, “I think that ‘I have to act perfectly’ as self-defense. I want people to think that I am a person with neurotypical development and not strange.”Furthermore, about half of the participants were bullied in school, which had a negative impact on their perceptions of themselves and their surroundings and how they dealt with interpersonal relationships.Difficulties at work, such as making mistakes repeatedly, not doing things as others around them do, or differences in learning time and pace of work, may frustrate the people around them. The participants’ work difficulties led to deteriorating relationships in the workplace, and repeated reprimands led to mental health problems. Furthermore, even though they worked hard and felt good at work, the accumulated stress affected their physical and mental health. As a result, the participants repeatedly changed jobs due to physical and mental illness, and some experienced social withdrawal. Participant 1 stated, “When I got used to it, and the workload or the responsibilities increased, I would have a hyperventilation attack. Hence, I would quit the job and start a new job again after taking some time for medical treatment. It is a repetitive pattern.”Participants described the accumulation of past hardships and challenging experiences as “maladaptation,” while referring to adaptation as “what I was lacking” (participant 10), “where I can cut back to get along with others” (participant 8), and “longing” (participant 2). Thus, their perceptions of adaptation were strongly influenced by what they felt they wanted but were difficult to do, based on their past experiences. Particularly before diagnosis, they believed that they could not adapt at all.Social expectations and evaluations were often referred to when participants mentioned the necessity to adapt socially. Particularly with regard to employment, participants indicated the direct and indirect social expectations from the surroundings, including being “worried about what other people think” (participant 10), people “talking behind my back” (participant 3), “oppression from others” (participant 5), and “people’s duty as stipulated in the Constitution” (participant 10). Participant 9 reported significant pressure to work, stating, “If I do not earn money, or at least become independent, I will be excluded; hence, I feel the pressure to adapt in order to protect myself and my family.”In addition, some participants felt that social roles or expectations for women created difficulties in adaptation. Participant 4 noted, “When I was in really bad health, I could not cook at all, so the expectation that women should cook [was] hard for me.” Participant 10 stated, “As a woman, there are some expectations to read the atmosphere and not be too disruptive in the social situation or something like that. However, I do not think I can do that well enough.”Some participants reported that what they had experienced in society affected their perception of social adaptation. Two participants worked in the welfare field, supporting people with disabilities. One of them stated, “I have told users that it is better to adapt to society while working, and I have seen a lot of situations where I really felt that way” (participant 6). Through work experiences, they gained knowledge of developmental disabilities and social security systems and saw people with various conditions that broadened their horizons.In addition, participants gained insights from their social experiences. Participant 5 reported learning that a relationship can be formed as long as the work was done at her part-time job. On the other hand, while at school, she experienced complex interpersonal difficulties, such as rejection and isolation. Participant 2 said that the experiences of being a homemaker and raising children had changed her thinking. Previously, she had thought that if she did not earn money, she was not working or being “useful”; however, she began to believe that homemakers undertake household chores as their work.Although the participants felt and even appeared to have adapted to society, they were also aware of difficulties in their daily life and required a certain amount of effort to live in the society. Participant 10 stated, “Certainly I got a diagnosis, but it does not change that I still have to work hard and do my best.”I experienced a time when it was difficult to even go to places with people. In that sense, greeting people may be quite easy for neurotypical people, but we have to work very hard for it (participant 1).In addition, participants were susceptible to the effects of their physical and mental health conditions, finding it challenging to go out and do everyday things when feeling unwell.The autistic core characteristics as well as physical and mental health conditions had a significant impact on the participants’ state of adaptation.All participants were diagnosed in adulthood, except for one diagnosed in late adolescence. Before diagnosis, they did not understand the difficulties they were experiencing and attempted to adapt with many “failures”. After the diagnosis, they came to understand their characteristics and learned how to deal with them, giving them some measure of control. Participant 2 stated, “After I started learning about autism and taking strategies to deal with it, I felt like my health was not so good but stable.”I did not have confidence in myself, so I thought that if I did not work hard, I would fail as a human being. However, I gradually felt that the rules were not universal in the world or absolute, so I thought I could withdraw or stop when needed (participant 6).Some participants said they realized that they had been pushing themselves too hard to adapt before diagnosis. However, after diagnosis, they were able to understand their characteristics and deal with social situations from a different perspective.This subcategory indicated the degree of evaluation of the participants’ adaptation and reason. If the participants worked or lived independently, it positively affected their judgment of the state of adaptation. Participant 6 noted, “In my case, other people would think that I am well adapted to society because I am doing a fairly regular job.” Furthermore, some participants described current work or life as “fun,” “comfortable,” and “easy-going.” They described doing well in their current living environment without as many difficulties or problems as in the past, which was associated with a positive evaluation.I feel much more at ease and less defensive when I am around neurotypical people. Moreover, I do not have to exert myself in such a weird way. That is why I think I have been able to adapt socially; well, be more natural.In terms of relationships, one participant said she could feel that not having “to force herself” allowed her to adapt to the current situation. Participant 4 stated:If you are an average person who is well adapted to society, you wake up every morning, go to work, get along well with the people at work, and even if things do not go well, you manage to get by. […] When I compare myself to such people, I feel that I am not able to adapt at all.In contrast, some participants believed that they did not adapt well socially, as the current situation was far from their ideal state of adaptation. Participant 2 stated:All participants referred to what they were conscious of or made an effort to adapt socially in everyday life. Some participants emphasized the importance of following basic social manners, such as being punctual, keeping promises, getting up properly, and greeting people, which they learned through being reprimanded by others, self-awareness, and painful experiences of not being treated courteously by other people. Furthermore, many participants believed that their current condition was the result of continuous effort and learning conducted to cover their autistic characteristics. “I am probably not very good at socializing with people, but I have learned a lot about talking” (participant 9). “The small accumulation of the past experiences made me think that it would be wise not to talk at all” (participant 3).In addition to avoiding the things I was not good at, I also focused on controlling my daily energy usage, like the amount of power consumption of machines, I just focused on controlling that. […] It is hard to control emotions. […] What we can control the most is our schedule.In addition to countermeasures to their surroundings, participants emphasized the importance of maintaining stability in their lives. Participant 2 mentioned that she purposely limited interpersonal relationships and worked to prioritize stability in everyday life, although ideally, she wanted better: “I keep telling myself to be content with the current situation.” Likewise, other participants shared the importance of consciously managing their daily lives to reduce burden. Participant 4 stated:The reason for such conscious adjustment in every aspect of their life was that in the past, they had overstrained themselves and suffered, forcing them to become conscious of maintaining stability within the limits of their characteristics and capacities.Participants often experienced being avoided or reprimanded by others and had significant feelings of self-denial. They felt that no one would help them or accept them. However, some participants had experiences of being accepted and acknowledged by the people around them, which influenced their self-evaluation. According to participant 8, “I probably have developmental, social, and communication difficulties, but the people around me now accept that, to the extent that I do not feel inferior because of my autistic characteristics.”Furthermore, the experience of being understood and accepted by the people around them helped the participants overcome their negative beliefs and gain new insights to begin adapting to society by choice rather than force. Participant 10 noted, “It is probably a really ordinary thing, but when I say something and the other person responds to what I say, and I realize that it is surprisingly interesting. That is what made me try to face [conversations with people].”Although social adaptation is often aimed at supporting autistic people, the specific goals may not include the perspectives of people themselves, with the state of adaptation judged based on the standards and values of non-autistic people. This qualitative study conducted interviews with autistic women to explore perceptions regarding social adaptation among the participants. The results revealed two core perceptions of social adaptation: maintaining stable relationships and fulfilling social roles.The participants’ perceptions were based on the accumulation of past negative experiences of “failure”, difficulties, and denial due to their autistic characteristics, which were regarded as “maladaptation,” while social adaptation was viewed as the complete opposite state. The participants reported being socially motivated to interact with others, being helpful, and having expectations regarding social roles, which was in line with adaptive behavior, such as camouflaging or masking, as observed in previous studies , 30–32. However, the autistic characteristics of cognitive flexibility  may affeInterestingly, one participant said, “After I tried not to aim for social adaptation, I started to feel more comfortable and was able to adapt to society as a result” (participant 4). Therefore, in some cases, participants were able to adapt to society in their individual way by not forcing themselves to do so. Similar trends were identified in previous qualitative research, in which the participants demonstrated “authentic autistic socializing,” reflecting reduced desire to conform to non-autistic norms or behave in a way that appears non-autistic and engaged in living with the self as it is . LivingsAs the participants had varied perceptions of adaptation, they tried to maintain stability in their daily lives by considering their characteristics, seeking adaptation within a reasonable range, and adjusting their balance with society. In line with previous studies , 37, thiHowever, it is important to note that the process of self-understanding is challenging and painful . The degThis study indicated that the experiences of being accepted, acknowledged, and being successful led the participants to change the way they dealt with society and their surroundings. Many participants had negative experiences of being rejected or avoided in their interpersonal relationships, leading to low self-esteem and a strong feeling of not being accepted by others, which was described as “disempowerment” in the process of diagnosis by Leedham et al. . HoweverOne participant stated that it is not the autistic people who are the obstacle, but the society that is the obstacle for them to live. This raises the question of whether it is appropriate to place responsibility for the social adaptation solely on autistic people. Discrepancies can arise between the autistic and non-autistic sides due to a lack of mutual understanding , and in This study indicated that autistic people should not be forced to unilaterally adapt to a society dominated by non-autistic people; instead, the non-autistic side should also adapt to autistic people and aim for mutual understanding and respect of diversity . In otheFurthermore, social barriers for a disabled person are closely related to the cultural background. The perceptions of social adaptation in this study were also likely related to the sociocultural environment , such asThis study focused on the perceptions of autistic women involved in social adaptation and examined their lived experiences in daily life rather than social situations. However, this study had some limitations. First, the factors that may affect adaptation, such as age, living conditions, and intellectual conditions, were not controlled. Particularly, the participants’ age range was wide. Their diagnosis and support experiences, knowledge of neurodevelopmental conditions, and challenges faced at various life stages varied by age. These might have influenced the differences in their needs and stance on adapting to society. In addition, as all the participants had, to some extent, already adapted to society; those struggling with adaptation were not included in this study. Therefore, examining the experiences and values or perceptions of social adaptation among autistic women of different age groups  is required.Social adaptation indicates leading an individually satisfying life. Ignoring individual needs may enforce a perception of adaptation that is socially correct or assumed by surrounding people. Based on the findings of this qualitative study, several important implications emerged to support healthy social adaptation in autistic people. First, their past efforts and hardships must be considered with respect, and further harmful efforts should be prevented. Support for reflecting on the past that autistic people themselves had tried to adapt excessively by internalizing the values or expectations of society, and encouraging them to realize that they do not have to push themselves to fit in or can avoid things they are uncomfortable with. Second, it is important to support them in making their choices in life rather than forcing them to adapt to society. In some cases, this may include the individual’s choice to adapt to the non-autistic surroundings; support provided to autistic people should consider their perspectives and desires. Third, positive social experiences, such as work and interpersonal relationships, may be the catalyst for negative and defensive perceptions of society among autistic people. Therefore, autistic people require an environment and understanding that does not deny their characteristics, but rather enables them to gain positive social experiences without anxiety. In addition, to improve their self-esteem, it is important to encourage them to work on what they like and are good at, rather than what they are not good at or do not like. Finally, for women in particular, in addition to having autistic characteristics, being a woman can cause difficulties in social adaptation. They are often seemingly well-adapted to society, and conceal that they are desperately trying to maintain this superficial adaptation. They need a place where they can be themselves and be accepted as they are.Below is the link to the electronic supplementary material.Supplementary Material 1Supplementary Material 2Supplementary Material 3Supplementary Material 4


Knowledge about the interactions between dietary and biomedical factors is scattered throughout uncountable research articles in an unstructured form  and requires automatic structuring so that it can be provided to medical professionals in a suitable format. Various biomedical knowledge graphs exist, however, they require further extension with relations between food and biomedical entities. In this study, we evaluate the performance of three state-of-the-art relation-mining pipelines  which extract relations between food, chemical and disease entities from textual data. We perform two case studies, where relations were automatically extracted by the pipelines and validated by domain experts. The results show that the pipelines can extract relations with an average precision around 70%, making new discoveries available to domain experts with reduced human effort, since the domain experts should only evaluate the results, instead of finding, and reading all new scientific papers. As the leading cause of death globally, most of the deaths that happen from cardiovascular diseases (CVDs) are due to heart attacks and strokes3. A lot of scientific evidence indicates that between the most important risk factors for heart disease and stroke are unhealthy diet, alcohol and tobacco consumption, and physical activity. Among all the factors that contribute to the development and progression of CVDs, diet is one of the major ones5. It has been shown that eating more fruit and vegetables and decreasing the salt in diet reduce the risk of CVDs.Noncommunicable chronic diseases (NCDs) account for more than 70% of deaths worldwide. Cardiovascular diseases account for most NCD deaths , followed by cancers (9.3 M), respiratory diseases (4.1 M), and diabetes mellitus (1.5 M)6. For instance, there are many foods (described by food entities) made up of components 7 that may fight NCDs (described by disease entities) while others can be harmful8. These impacts are dependent on the combination of foods and their chemicals, the state of the food , the cooking method , the health status of the person consuming food  and others9. As there are many combinations of these factors, collecting and structuring the relations between all the concepts and entities describing the impacts of food on NCDs is a very complex work exceeding human capabilities. And taking into account the fact that research in this field is still progressing, the related knowledge evolves on a daily basis, making it challenging to follow. Such knowledge further opens possibilities to use Artificial Intelligence (AI) methods to aid in the early detection (prediction) of NCDs as well as their progression. However, before developing predictive AI methods, unstructured  data available in cohorts, electronic health records (EHRs), registries, and scientific and grey literature needs to be structured and normalized/linked to domain semantic resources and further included in knowledge bases (KBs) which can be utilized for predictive modeling and integrated into health systems which will make the information easily accessible to medical professionals. To this end, user interfaces play a critical role in ensuring that healthcare professionals can effectively utilize AI systems to provide high-quality care to their patients10.Further, although there is a lot of knowledge about dietary effects on CVDs and broadly on NCDs, there are still many unresolved research questions. Such questions are not easy to be answered because food and nutrition in relation to diseases are described by various concepts and entities that interact in various ways11, however, due to the high amount of effort required by domain experts, they also have lower recall rates, poor scalability and time efficiency12. Automatic and semi-automatic KG construction is enabled by text-mining methods, which are able to extract entities and relations which can be structured as a KG.A Knowledge Graph (KG) is a type of KB, where knowledge is stored in the form of entities characterized by some attributes, and relations connecting the entities. Conventional methods of KG construction can be broadly categorized into manual, and automatic, or semi-automatic methods. The benefits of manual creation and curation approaches are their high precision and reliability13. Over the past 20 years, significant progress has been made in creating multiple IE pipelines for the biomedical domain. These pipelines primarily concentrate on identifying genotype and phenotype entities, as well as health-related entities such as diseases, treatments, drugs, and others. To allow their development, several collaborative workshops, as part of conference events like BioNLP14, BioCreative15, i2b216, and DDIExtraction17, have been arranged to provide semantic resources  that will further allow the developing of biomedical IE pipelines. The efforts done in the biomedical domain are focused entirely on biomedical concepts and not investigating relations with food concepts. On the other side, most of the efforts done in IE in the food domain are focused on relations that do not involve health/biomedical concepts, and even more, are developed using static data that is already presented in some other resources , so they need to be updated when new data is available in these resources. In addition, only a few studies have concentrated on traditional text mining techniques that employ sentiment analysis through manual feature extraction20. Despite this, the food and nutrition domain is low-resourced in semantic data resources compared to the biomedical domain. There is a lack of annotated food-disease relation corpora that serve as a benchmark and help develop IE pipelines. Even more, food semantic resources such as FoodOn21, FoodEx222, are still under development  to support IE activities.In the biomedical domain, automatic and semi-automatic structuring of textual data in the form of KGs is an active research area, which typically involves the use of Information Extraction (IE) pipelines consisting of multiple components. These components include Named Entity Recognition (NER) methods, which extract specific types of entities from raw text, Named Entity Linking (NEL) methods, whose goal is to map entity mentions to entries in a given KB, and Relation Extraction (RE) methods, which aim to automatically detect relations between entitieslanguage models to extract the relations that exist between food, chemical, and disease entities and further normalize them to allow the creation of a KG. In our case, we evaluate the approach to trace the new knowledge about CVDs and milk products. The benefit of our approach is that we are not using the information that already exists in some static resources , but try to catch all relations from textual data related to CVDs and milk products  available in scientific abstracts, where new findings are presented. This makes the methodology easy to apply on new corpora of scientific abstracts, where the results of the pipelines can point out areas where the KG should be updated with new entities or relations.To bridge the gap between the food and biomedical domains, we introduce an approach that uses 23 highlights the application of KGs in the biomedical and clinical domain in improving the retrieval of information from large sources of clinical data or literature26, providing evidence to support phenomena observed in data28, using link prediction to complete missing information and hypothesize previously unknown relationships29, and improving patient data representation32. In the biomedical domain, IE pipelines have been developed for the extraction of drug-disease relations34 and disease-symptom relations35 from biomedical literature. A Coronavirus KG has been constructed by merging the Analytical Graph, with a collection of published scientific articles36. A PubMed KG has been constructed by extracting biomedical entities from PubMed abstracts and enriching it with funding, author, and affiliation data37. A recent work12 proposes the construction of domain-specific KGs with minimal supervision, which is able to derive open-ended relations from unstructured biomedical articles without the need of extensive labeling. While this study is largely focused on data integration, and only uses NER to extract the biomedical entities from the literature, our study goes a step further in the RE task, to extract the relations between the entities based on the text in the scientific abstracts, so that new relations can be added between entities in existing resources. Apart from using biomedical scientific papers as a source of information, EHRs have also been used for extracting disease-symptom relations38 and constructing a medical KG with nine biomedical entity types39.A recent survey on knowledge-based biomedical data science40 by enriching a large amount of recipe data from Recipe1M dataset with the nutritional information available from USDA’s National Nutrient Database for Standard Reference represented with FoodOn21 semantic meta-data. Additionally, FoodKG41 was developed by using the existing text and graph embedding techniques applied to a controlled vocabulary called AGROVOC, to model the relations that exist in a plethora of datasets related to food, energy and water.In the food domain, FoodKG has been recently developed for representing food recipe data including their ingredients and nutritional contentTo trace the knowledge about food, chemical, and disease interactions, we have shown the creation of a KG centered around the impact of different foods and chemicals on CVDs, and the other targeting the composition of the selected food item “milk”, as well as its beneficial and detrimental effects on different NCDs. For this purpose, three NLP pipelines, called FooDis, FoodChem, and ChemDis, were combined to extract “food-disease”, “food-chemical”, and “chemical-disease” relations from textual data. Semantically, we distinguish two relations between food-disease and chemical-disease entity pairs, which are “treat” and “cause”. In the case of food-chemical entity pairs, we extracted only one relation which is “contains”. All three pipelines were executed twice, on two different corpora, one that was collected for CVDs and one collected for milk products. In both use cases, the searched keywords were selected by domain experts. In the CVDs case, a more general keyword was selected “heart disease food”, since we would like to retrieve broader aspects between different cardiovascular events and food products. This ends up with 9984 abstracts. In the milk use case, three keywords were selected by the domain experts i.e., “milk composition”, “milk disease”, and “milk health benefits”.Table Figure To go into more detail how the KG is constructed, in Fig. For the CVDs use case, a highly-skilled domain expert (an MD with more than 40 years of working experience in cardiology) evaluated the extractions from the three pipelines. The relations that were evaluated are extracted after the “Final relation determination” step from the FooDis, FoodChem and ChemDis pipelines. All three pipelines utilized here follow the same workflow. Each extracted relation is determined by all sentences where information about it is presented. We called them “supporting sentences”. The sentences can be from the same or different abstracts, since information about the same relation can be investigated in different papers.Each pipeline provides the result as a 6-tuple i.e., , which is further evaluated by the domain expert. The domain expert was asked to assign a binary indicator of the truthfulness of the relation. The pipelines were then evaluated by taking the mean of the correctness indicators assigned by the annotator for each relation and pipeline, which we refer to as the precision in the remainder of this section. In particular, if a pipeline extracted three relations, and the expert marked two of these as correct , the reported precision would be 0.66.Figure The mean precision of each of the pipelines  in the CVDs use case is presented in Fig. Since the three pipelines extract a relation based on supporting sentences, in the All of the pipelines extract more than 74% of the relations based on a single supporting sentence. The ChemDis and FoodChem pipelines can find a larger number of supporting sentences for some relations compared to the FooDis pipeline. In particular, the ChemDis pipeline can find up to five supporting sentences to identify “cause” relations and up to 14 supporting sentences to identify “treat” relations, while the FooDis pipeline uses up to three, and four supporting sentences for the “cause” and “treat” relations, respectively.Next, to see how the mean precision is affected by the number of supporting sentences, we analyze for each semantic relation separately. The results are presented in Next, we analyze the types of false discoveries produced by FooDis, FoodChem, and ChemDis pipelines.Figure For the “carbohydrates” entity, the ChemDis pipeline produced the false positive relation “carbohydrates-treat-cardiomyopathy” when the supporting sentences suggested that a low-carbohydrate diet is recommended for treating cardiomyopathy. In this case, the pipeline fails to identify that a reduction of the chemical entity is required to treat the disease. In addition, the FoodChem pipeline produces a false discovered relation “bulk-contains-carbohydrates”, when the supporting sentence was saying that these two entities are contained in another entity, “dry beans”. For the “fatty acid” chemical entity, the ChemDis pipeline produced the false positive relation “fatty acid-cause-dysfunction endothelial”, when the supporting sentence was saying that increased fatty acid levels and endothelial dysfunction were contributing to the development of another disease, “sepsis”. The FoodChem pipeline produced the false entities, “wine-contains-fatty acid” and “acid fatty trans-contains-fatty acid”. In the first case, the two entities were co-occurring in the supporting sentence without any relation, while in the second one, the sentence was saying that trans fatty acids are a subcategory of fatty acids. In the case of the “sodium” chemical entity, most of the sentences extracted by the ChemDis pipeline express the correct relation, however, sodium is incorrectly extracted as a partial match of the entity “Sodium-glucose co-transporter 2 inhibitors (SGLT2is)”. In the case of “vitamin d”, all of the false positive “cause” relations extracted by the ChemDis pipeline are due to the pipeline not recognizing that the deficiency of the vitamin was causing the diseases.Figure For the use case related to the composition and health effects of milk, two highly-skilled domain experts evaluated the results from all three pipelines: a chemist and a food and nutritional scientist.From the 33,111 processed abstracts related to the milk case study, the three pipelines extracted a total of 6792 relations, from which 5139 were evaluated by the two domain experts. We need to point out again that all extracted relations were provided to the domain experts, however, they evaluated only those relations for which they have domain expertise. Figure The mean precision for each of the five semantic relations for both domain experts is presented in Fig. 0.51 for the “cause” relation extracted by the ChemDis pipeline,0.79 for the “treat” relation extracted by the ChemDis pipeline,0.65 for the “cause” relation extracted by the FooDis pipeline,0.70 for the “treat” relation extracted by the FooDis pipeline,0.70 for the “contains” relation extracted by the FoodChem pipeline.The error analysis for the milk case study followed the same procedure as for the heart disease study and resulted in similar findings, presented in the The overall mean precision for each of the five relations averaged across both domain experts are as follows:Going through the two use cases, it is obvious that the proposed methodology can be used to structure the new knowledge that is coming rapidly with new scientifically published papers. On average, the precision of each extracted relation is around 70%. This indicates that the pipelines allow us to trace the knowledge and make it available to domain experts. This reduces the time required by the domain experts, since they should only evaluate the results, instead of finding and reading all new papers.44 and FoodNER45 were the only corpus-based food NER models. However, because these models were trained on food recipe text, which is very different from scientific text both in the contents and the writing style, the models failed to generalize to scientific text and did not produce satisfactory results. As far as the chemical and disease NER models are concerned, we chose to use the SABER method, since it performs both the NER and NEL tasks and is reported to have good predictive performance.Even though the pipelines can contribute to the automation of the KG construction process and reduce the efforts required by the experts in structuring scientific text, there are still opportunities for further improvements. A large portion of the incorrectly extracted relations is due to the partial extraction of entities, especially by the food NER methods, which is a consequence of the simple dictionary-based approach. We want to point out here that in initial experiments, we also considered other food NER methods that are corpus-based and involve the training of a ML model on text annotated with food entities. At that time, BuTTERFurther extension of the pipelines is needed to capture quantities, i.e. whether a surplus or a deficit of the entities in question lead to the development or treatment of the diseases. Some of the relations are false positives due to mistakes made by the RE models, for instance, where a relation was extracted between entities that simply co-occur in a sentence without any relation, or the relation is expressed in the sentence, but between different entities. The RE models produce such errors, especially in the case where a single sentence contains a lot of entities or expresses multiple relations. This is likely due to the RE models extracting the “cause” and “treat” relations being trained using transfer learning, and the RE models extracting the “contains” relation being trained using small amounts of manually annotated data. The annotations produced as part of this study can be used to re-train the RE models using larger quantities of high-quality data.From the point of view of assessing the importance of milk in our diet, it is crucial to assess the large amount of data available to obtain consistent outcomes and to evaluate the advantages and disadvantages of milk consumption. The presented approach can provide evidence that can be used to develop or renew dietary and health guidelines for relevant decision-makers.In this study, three relation mining pipelines  are used to extract relations between food, chemical, and disease entities, from the raw text of abstracts of biomedical scientific textual data.The pipelines follow a common template, which is presented in Fig. Next, sentences that express facts or analysis of the research and contain at least one pair of different entities are extracted from the abstracts. Abstracts typically include the objective, hypothesis, methodology, and main findings of the research. However, not all of these pieces of information are reliable sources for drawing conclusions, since if the authors’ hypothesis was untrue, and we were to extract information from the sentence that describes that hypothesis, our findings would be incorrect. For this reason, it is necessary to identify sentences which describe the objective, hypothesis, or methodology of the research and only extract relations from the sentences which describe the research findings or previously known facts.The sentences are annotated for the existence of a “cause”, “treat” or “contains” relation, and the entity pairs are connected with one of these relations on the basis of the gathered evidence.45, these methods are trained on the FoodBase corpus46, which contains recipe texts. As was observed in our experiments, when applied on scientific text, the corpus-based methods have poor generalization, so in order to extract the food entities, we opted for a simpler, dictionary-based approach which uses a dictionary of food names extracted from the Unified Medical Language System (UMLS) Metathesaurus, which is not dependent on the data used for training the model. For this purpose, we use the MRSTY and MRCONSO tables from the UMLS Rich Release Format files47. The construction of the dictionary involves two steps: extracting the identifiers of all concepts with the semantic type “food” from the MRSTY table, and extracting all of the names used to refer to each of the food concepts from the MRCONSO table. In this dictionary, we have a total of 36,836 instances. By matching the words in the abstracts with the names of food entities defined in the dictionary extracted from the UMLS, we are also able to perform the NEL task, i.e. link the extracted food entities with their identifiers in the UMLS, and further find their identifiers in other KBs to which the UMLS identifiers are linked.Even though corpus-based methods have already been developed for the food domain48 is a tool providing several pre-trained models for biomedical NER and NEL, using a neural network architecture consisting of Bidirectional Long Short-Term Memory and Conditional Random Fields. We use the DISO pre-trained model to extract disease entities, which can be “Acquired Abnormality”, “Anatomical Abnormality”, “Cell or Molecular Dysfunction”, “Congenital Abnormality”, “Pathologic Function”, “Disease or Syndrome”, “Mental or Behavioral Dysfunction”, “Neoplastic Process”, “Sign or Symptom”. Apart from identifying these entities, SABER can also perform NEL, i.e. link the extracted entities to identifiers in the Disease Ontology49.The Sequence Annotator for Biomedical Entities and Relations (SABER)48 tool to extract chemical entities which can be mentioned in the text using common and trademark names, abbreviations, molecular formulas, chemical database identifiers, and names defined in the nomenclature of the International Union of Pure and Applied Chemistry. SABER is also capable of linking the extracted chemical entities to the PubChem database50.We use the pre-trained model CHED from the SABER51 is a RE model which employs transfer learning to identify “cause” or “treat” relations. BERT52, RoBERTa53 and BioBERT54 models are trained on data that is annotated for the existence of “cause” and “treat” relations between different types of biomedical entities in the CrowdTruth57, Adverse Drug Events58 and the FoodDisease datasets59. We choose to use the Single Sequence Classifier (SSC) models introduced in51, which are trained by fine-tuning BioBERT and RoBERTa models to perform the RE task on the CrowdTruth and FoodDisease datasets, since these datasets are annotated for the existence of both the “cause” and the “treat” relation, unlike the models trained on the Adverse Drug Events dataset, which can only identify the “cause” relation. The occurrences of the biomedical entities in each annotated sentence are masked to prevent the models from learning relations between specific entities and teach them to instead recognize relations based on the context words used to express the relation, so they can successfully generalize to the task of recognizing the relations, regardless of the type of entities between which they occur. Each model outputs a binary indicator of the existence of a “cause” or “treat” relation.SAFFRONThe SAFFRON models are applied to each sentence that contains 2 entities of the required type , and expresses a “Fact” or “Analysis” of the research article. In particular, the 4 models  are applied for the extraction of each relation, “cause” or “treat”. A voting strategy is used to combine the binary predictions of the 8 models. A “cause” relation is assigned if at least 3 out of the 4 models which are trained to extract this relation produce a positive prediction, and at most 1 out of the 4 models which are trained to predict the “treat” relation produce a positive prediction and vice versa. If this condition is not satisfied for any of the “cause” or “treat” relations, the sentence is discarded.59 is used to extract the “contains” relations between food and chemical entities. For this purpose, 3 transformer-based models  are applied on each sentence that contains at least one food and one chemical entity, and expresses a “Fact” or “Analysis”. A voting scheme is implemented in such a way that a “contains” relation is assigned to a  triple if at least 2 of the 3 models produce a positive prediction for the existence of the relation. If less than 2 models produce a positive prediction, the triple is discarded.The FoodChem RE modelThe FooDis, FoodChem and ChemDis pipelines follow the same methodological template and only differ in the NER and RE methods used to extract the entities and relations.The FooDis pipeline extracts “cause” and “treat” relations between food and disease entities. A dictionary-based NER method using the food names in the Unified Medical Language System (UMLS) is applied to extract the food entities from the text of the abstracts. The SABER DISO model is used to extract the disease entities.The FoodChem pipeline extracts “contains” relations between food and chemical entities. The entities are extracted using the corresponding NER methods, and the FoodChem RE model is applied to each sentence.The ChemDis pipeline extracts “cause” and “treat” relations between chemical and disease entities. The pipeline components are identical to the FooDis pipeline, with the exception of the use of a different pre-trained SABER model. In the ChemDis pipeline, the SABER CHED model is used to extract chemical entities, whereas in the FooDis pipeline, the SABER DISO model is used to extract disease entities.The three pipelines FooDis, FoodChem and ChemDis produce triples in the form of . Each entity is further linked to an external KB. Such outputs are naturally suited for the construction of a KG. The constructed KG contains nodes that represent the food, chemical and disease concepts from the external KBs, as determined by their unique identifiers. In the case when several terms can be used to refer to the same entity (i.e. the terms are synonyms), the terms are grouped by their unique identifiers. This means that the relations in which a unique entity is involved are determined based on all of the relations identified for its synonyms. In order to make the results more easily interpretable, instead of only using the identifiers in the constructed KG, we assign to each entity node one of the synonyms as its name. The edges in the constructed KG represent the “cause”, “treat” or “contains” relations.In this paper, we conduct an evaluation of three Information Extraction pipelines . The pipelines extract relations between food, chemical, and disease entities from abstracts of scientific papers. Three domain experts evaluated the pipelines for two use cases, the first one being centered around cardiovascular diseases, and the second one targeting milk and milk products. This is the first application of the three pipelines where the results were evaluated by domain experts. The FoodChem pipeline, extracting “contains” relations between food and chemical entities, achieves a mean precision of 0.70 when aggregated across the evaluation of the three experts. The ChemDis pipeline, capturing relations between chemical and disease entities, obtains a mean precision of 0.56 for the extraction of the “cause” relation and 0.79 for the “treat” relation. The FooDis pipeline achieves a mean precision of 0.69 for the extraction of the “cause” relation and 0.73 for the “treat” relation. The conducted evaluation and the expert consultation revealed potential directions for further improvement of the pipelines. The annotated data is also a valuable resource that can be used to retrain and improve the RE models.Supplementary Information.


Early childhood home visiting is a preventive service delivery strategy that aims to promote child and parent health, positive parenting, child development and school readiness, and family economic self-sufficiency. To meet families’ needs, programs provide a combination of direct services, and referrals and linkages to community-based services. Service coordination is therefore a critical component of home visiting’s role within the early childhood system of care. This multiple-case study describes facilitators and barriers to service coordination, as identified by home visiting program staff and families. We interviewed program managers, supervisors, home visitors, and families from four local home visiting programs in the eastern USA with diverse contextual characteristics that showed evidence of having strong coordination. Using multiple-case study methodology, we analyzed the data to understand key facilitators and barriers to service coordination for each case and identify and describe common themes across cases. Facilitators included interagency relationships and collaboration; a culture of teamwork; dedicated, well-connected staff; supervision; trusting relationships with families; and warm handoffs. Barriers to service coordination were limited availability and accessibility of local resources, perceived stigma among other service providers, and families’ ambivalence toward some services. Home visiting staff and families emphasized that relationships at multiple levels are fundamental to service coordination, barriers are complex, and coordination is time- and labor-intensive. Coalitions that bring together diverse stakeholder groups at the state and local levels can provide meaningful coordination support to the early childhood services.The online version contains supplementary material available at 10.1007/s11121-023-01558-6. Maternal and early childhood home visiting is a preventive service strategy that provides voluntary home–based services to expectant families and families with young children  Program and invested $1.5 billion towards implementing evidence-based home visiting program models , for each of four service needs . Further details on the survey and summary score calculations are described elsewhere , a supervisor (SV) when available , two home visitors (HVs), and four families to participate in interviews. To be eligible to participate, PMs must have worked at the site for 2 years, SVs for 1 year, and HVs for 6 months. The study team asked each participating HV to refer two families from their caseload to participate in an interview and assisted HVs with randomly selecting eligible families. Families were eligible if the primary caregiver was at least 18 years old, spoke English, had been enrolled in home visiting for at least 6 months, and had been referred for at least one service, such as for counseling, child development services, or substance use treatment.Between October 2017 and January 2018, two study team members conducted site visits at the four programs. They completed staff interviews in-person, collected documents, and toured each site. One study team member conducted the family interviews by phone within 2 weeks of the site visit. Interviews were audio recorded, de-identified, and transcribed verbatim.Previous home visiting service coordination literature and the Measurement Framework for Coordination informed the interview guide. The study team piloted and refined the HV, PM, and family interview guides based on participant feedback. The team also tailored the guides to the interview participants’ roles. Staff interviews were designed to take about an hour to complete and included open-ended questions about the local and organizational context, site implementation systems and activities related to service coordination, and perceived facilitators and barriers to achieving successful service coordination. We asked home visiting staff to provide their definition of service coordination, describe how it works in their program, and describe their programs’ expectations for coordinating services with families around concerns such as mental health and substance use, child developmental delays, and intimate partner violence. Family interviews were designed to take about 30 min to complete and asked open-ended questions about families’ perceptions of and satisfaction with service coordination processes, including the referrals that they received and how their home visitor made the referral, linked them with services, and followed up with them about the referral. We conducted 30 interviews total, with two PMs, two PM/SVs, two SVs, eight HVs, and 16 family members.We also collected and reviewed programmatic documents. We asked PMs to provide copies of any documents related to service coordination, including: forms to guide intake, screening, referral, linkage, and follow up; job descriptions; policies and procedures on service coordination; forms used in supervision; data sharing agreements; and any other policies, procedures, or forms used to guide, support, or track service coordination.The study team analyzed the interview data using Dedoose . To deveAs a first step of synthesis, investigators drafted an individual case study for each program using a common template. To promote credibility, we conducted member checks by sharing drafts with staff at each site to verify whether the results resonated with their experiences . The PM/SV from Case 3 described the first call to connect with a service as a potentially “scary moment” for families. She went on to describe how HVs can be more supportive and helpful in these situations when they have earned families’ trust: “And so that's a great opportunity is that phone call, while you are in the household with them, sitting beside your mom, and say, I'm here for you, and I'll help you through this scary moment.”Families also described trust as important for successful service coordination. A family member from Case 4 described her HV as the “main one in my corner” when it came to helping her connect with mental health services. Another family member from Case 4 stated, “They are very trustworthy. Anything you tell them, you don't have to worry about such and such knowing about it, or he knows about it, it's just between us two.”If I would have said, ‘Okay, I’ll be here at 10 to pick you up,’ then I’m starting something that is not helping her because I’m going to try to empower her to think and get these things done on her own. Staff from Cases 2 and 4 emphasized that they aimed to empower families through their approach to service coordination. HVs wanted families to build on their own resources and supports, with the hope that they would be able to sustain these connections after they left the program. As described by one HV from Case 2,The PM from Case 4 described how “doing with, not for” empowered families, when HVs “encourage the family to think about how they might overcome or how they might deal with [challenges] so that they are empowered to know how to help themselves.”When it comes to actually working with the families, I like getting into trenches and doing what’s going to help them. Maybe some programs say you have to do this, this, this, and you come out to the family and it’s really not where they’re at. I like to get to know each family, see where they’re at, and customize the fit just where they’re at. HVs from Cases 1, 3, and 4 tailored their approaches to service coordination according to the service needs and preferences of each family. An HV from Case 4 described her approach to tailoring as “meeting families where they are.” She stated,An HV from Case 3 stated that she decided how much to assist families with referrals and linkages based on the family’s level of interest and readiness to be connected with services.HVs in Cases 3 and 4 described using warm handoffs, in which the HV connected families to providers directly, to facilitate service coordination. An HV from Case 3 described warm handoffs as encouraging another level of “accountability” for other service providers to follow up with families, because they knew that the HV would come back and check in to see how services were received. An HV from Case 4 stated that she accompanied and introduced families to new service providers for their first visit to improve their comfort level.Home visiting is uniquely positioned to help families identify and obtain needed services in their communities. There is limited published research on service coordination in home visiting; the results of our multiple-case study add to this literature by illustrating the complexity of service coordination among home visiting and other early childhood services, as described by home visiting staff and families from sites that showed evidence of having strong systems in place to support service coordination, based on their responses to an earlier survey. Results suggest that successful coordination depends on sites having strong implementation supports, activities, and relationships across multiple levels of the early childhood system.A strong implementation system and activities for service coordination include infrastructure and key drivers such as policies and procedures, staff supervision, systems that support monitoring of referrals and outcomes, and specific strategies for working with families to support screening, referral, linkage, and follow-up Below is the link to the electronic supplementary material.


Cases of reported tick-borne diseases in humans have increased over the past decades. Strategies informing the public about ticks, their associated diseases, and preventive measures are often highlighted as important in limiting pathogen transfer and disease. However, knowledge about the motivation for people to apply preventative measures is sparse.The aim was to examine if Protection Motivation Theory, a model of disease prevention and health promotion, can predict the use of protective measures against ticks. Ordinal logistic regression and Chi-square tests were used on data from a cross-sectional survey with respondents from Denmark, Norway, and Sweden (n = 2658). We examined the effect of (1) the perceived seriousness of tick bites, Lyme borreliosis (LB), and tick-borne encephalitis (TBE), and (2) the perceived probability of getting a tick bite, Lyme borreliosis, and tick-borne encephalitis on protection against ticks. Finally, we examined if there was an association between the use of a protective measure and the perceived efficacy of that measure.The perceived seriousness of a tick bite and LB significantly predict who is more likely to apply protective measures for all three countries combined. The perceived seriousness of TBE did not significantly predict the level of adoption of protective measures applied by respondents. The perceived likelihood of getting a tick bite within the next 12 months and the perceived likelihood of getting LB if bitten by a tick significantly predicted the application of protective measures. However, the increases in the likelihood of protection were very small. The application of a certain type of protection was always correlated with the perceived efficacy of the same protective measure.Some variables of PMT may be used to predict the level of adoption of protection applied against ticks and tick-borne diseases. We found that the perceived seriousness of a tick bite and LB significantly predict the level of adoption protection. The perceived likelihood of getting a tick bite or LB also significantly predicted the level of adoption of protection, although the change was very small. The results regarding TBE were less clear. Lastly, there was an association between applying a protective measure and the perceived efficacy of the same measure.The online version contains supplementary material available at 10.1186/s12889-023-16125-5. Vector-borne diseases are caused by pathogenic microorganisms transmitted by a vector such as arthropods and account for more than 17% of all infectious diseases worldwide , 3]. Ex. Ex3]. EAn unweighted mean incidence rate for LB in Western Europe based on reported incidences in the literature has been estimated to be 56.3 per 100,000 persons equating to approximately 232,125 cases per year . In the The risk of contracting a TBD may be minimized by several human actions , and theSeveral studies have examined the knowledge of ticks, TBDs, and protective measures applied against ticks by people in several countries, all pointing to the conclusion that knowledge about ticks, TBDs, and protective measures is low and level of adoption of protection could be improved –19. All ), a model of disease prevention and health promotion, is partly built on the concept of fear appeal . W. W32]. WSince PMT can be used as a model to predict health behavior , the aimWe hypothesized that a higher perceived seriousness and likelihood of a tick bite, LB, or TBE to occur will lead to an increase in level of adoption of protection. Further, we hypothesized that the use of a protective measure is associated with perceived efficacy of the same measure.Since personal protective behavior is often highlighted as a crucial strategy in reducing the TBD incidence rate, , 33], , –39, deteA cross-sectional survey was developed and conducted in 2016 in Denmark, Norway, and Sweden as part of a joint Scandinavian research project (ScandTick Innovation). Thorough descriptions of the study design, study sample, the survey, data collection, and rate of participation have been provided previously , 32], , . AlthougWe examine the effect of one or multiple independent variables on the dependent variable “protection” which is a three-point ordinal scale that measures levels of adoption of protection based on six types of protective measures Table .The three levels of adoption of protection are: rarely/never use any, often/always use 1–2, and often/always use 3 or more, as previously defined . We focuThe variables of perceived seriousness, i.e., “Perceived seriousness of a tick bite” (n = 2658), “Perceived seriousness of LB” (n = 2562), and “Perceived seriousness of TBE” (n = 1850) were assessed by a question where the respondent had answered on a 0–10 scale how serious they believed it was to get a tick bite. ‘Don’t know’ was also an option but was excluded from analyses since we were examining the effect of different perceptions on applying a protective measure. ‘Don’t know’ was answered by 1.4% for tick bite, 1.3% for LB, and 3% for TBE. The variables were binned during analysis to a three-point scale with 0–3 = not serious, 4–6 = serious, and 7–10 = very serious due to some values having too few responses. Perceived probability of getting a tick bite (n = 2650), LB (n = 2519), or TBE (n = 1815) was reported on a scale from 0 to 100 with 0 being “I’m absolutely certain I will not get bitten” and 100 being “I’m absolutely certain I will get bitten”.female = 1403, nmale = 1255, people responding ‘other’ or ‘I choose not to respond’ (n = 10) were excluded from the analyses) and country (Denmark (n = 781), Norway (n = 786), and Sweden (n = 1091). Previous analyses of age groups have shown statistically significant differences between some age groups in “likelihood of contracting LB and TBE” and“perceived seriousness of tick bite, LB, and TBE” and protection , , , but basOverall, respondents from Denmark and Norway were less likely to apply protective measures than respondents from Sweden regarding all perceived likelihoods. This effect may be explained by different information campaigns regarding ticks or visiting nature, but this was not examined.However, we will recommend for future research to look into this. An everyday perspective of protection and behaviour might give new answers, as there might be differences in the way people venture into nature. As an example, some areas may be used for different leisure activities in the summer. Naturally wearing long trousers in one setting and wearing open sandals in another setting might be area specific and based on fluctuations during the calendar year. Future research could include qualitative methods such as observation and interviews to uncover the specific practises in order to give recommendations for health promotion and disease prevention.Finally, we found correlations between how often a respondent is using a protective measure and the perceived efficacy of the same protective measure. For example, a person who believes mosquito repellents do not offer any protection is less likely to use mosquito repellents. Perceived efficacy seems to be a good predictor of protection motivation , 28], , .Our study shows that the first variable of PMT, here ‘the perceived seriousness of a tick bite’ and to some extent LB, significantly predicts the level of adoption of protective measures applied. The perceived seriousness of TBE, however, did not predict level of adoption of protective measures applied. Although respondents generally have a higher perceived seriousness of TBE than a tick bite and LB  the resuIn a revised PMT, self-efficacy is a fourth component that has a positive effect on the adoption of a protective behavior . UnfortuAlthough this study does not cover self-efficacy, we did examine perceived efficacy of six different protective measures and found a correlation between this and how often a respondent applies the same protective measure. This is in line with another study that found that perceived efficacy is a reliable predictor of preventive measures against ticks . As not As proposed earlier, encouraging the public to take precaution regarding ticks without causing fear that may limit outdoor activities is a challenging task for health authorities . HoweverFurther, as the cognitive recognition of a fear appeal is dependent on the understanding of a possible fearful event  one cannA limitation to this study is that respondents answering the survey may have more interest in ticks compared to people who chose not to answer, the use of words subject to personal interpretation such as often and rarely, and the difficulty of assessing a perceived risk or likelihood of something occurring. Further, determining which independent variables are effective in predicting the dependent variable protection is more complex than the few variables examined in this study. The variables ‘perceived seriousness’ and ‘perceived likelihood’ are affected by many other confounding variables such as experience, source of information about ticks and TBDs, occupation, personality, and trust , 36], , . As wellOften when people do things with a known high risk of having a negative effect on health  they are often pleasurable ; this, hOur results indicate that variables of Protection Motivation Theory may be useful in predicting the level of adoption of protection applied against ticks in Denmark, Norway, and Sweden and possibly other countries where tick-borne diseases are of concern.Further, our results confirm that women are more likely to be protecting themselves than men, even when the perceived level of seriousness and likelihood of a tick bite and LB are the same in the two groups. Perceived seriousness and likelihood of TBE were not good predictors. This could be caused by TBE being rarer in occurrence and people having poor knowledge about the disease. People from Sweden were more likely to protect themselves than people from Denmark and Norway when TBE was considered very serious and when considering the perceived likelihood of getting TBE if bitten by a tick.Being able to clearly communicate the seriousness of tick and TBDs, likelihood of a TBD, combined with the efficacy of protective measures to the public, is important in tick prevention strategies.Below is the link to the electronic supplementary material.Supplementary Material 1


Research examining decision-making in sports has predominantly used experimental approaches that fail to provide a holistic understanding of the various factors that impact the decision-making process. The current study aimed to explore the decision-making processes of Senior (expert) and Academy (near-expert) Gaelic Football players using a focus group approach.n = 5; n = 6) and two with U17 Academy players . In each focus group, short video clips of Senior Gaelic football games were played, and the action was paused at key moments. The group then discussed the options available to the player in possession, the decision they would make in that situation, and importantly, what factors influenced the final decision. Thematic analysis was used to identify themes that emerged from the focus groups.Four focus groups were conducted; two with Senior players , current match context (score and time remaining), and visual information , and the fourth theme related to individual differences  that moderated the decision-making process. Compared to the near-expert Academy players, the expert Senior players displayed a more sophisticated understanding of the various sources of information and were able to integrate them in a more complex manner to make projections regarding future scenarios. For both groups, the decision-making process was moderated by individual differences. A schematic has been developed based on the study findings in an attempt to illustrate the hypothesized decision-making process. Gaelic football is a complex invasion sport involving two teams of 15 players. The aim is to outscore the opposition by striking an ovoid ball into an “H” shaped goal, either over the crossbar for one point, or under it for three points. As with other complex and time-constrained invasion sports, success in Gaelic football is highly dependent on players' perceptual-cognitive skills  approach Klein, . In thisRecently, many researchers have adopted a similar qualitative approach to explore the factors affecting decision-making in sports  and U17 academy (n = 11) Gaelic Football players were recruited from a GAA National Football League club. The senior players  had an average of 19.10 years playing experience (SD = 4.01), while the academy players  had an average of 8.00 years playing experience (SD = 1.00). The entire sample comprised 11 attackers and 10 defenders, including midfield players who self-identified as more attacking or more defensive and labeled accordingly.Twenty-one senior . After questions or concerns had been addressed, and those who were willing to participate signed a consent form. The study was approved by the ethics committee of the lead institution. Players were randomly assigned to within-squad focus groups , yielding a total of four focus groups with a maximum of 6 participants in any one group.In the focus group session, participants were shown eight video clips, lasting 60–150 s , from senior men's Inter-county championship matches, none of which involved the participants. All clips depicted an attacking phase of play, in which one team advanced into their opponent's half of the pitch to varying degrees. Each clip was freezeframed approximately 120 ms before a point at which the player in possession of the ball made a key behavioral decision  “What do you think is the best option for the player in possession?”. Participants were asked to write their responses to these two questions on a piece of paper at first. The answers to these questions were not necessarily identical but could be. A group discussion then took place about why they chose the options they did, what information they used to choose those options, and what factors influenced their final decision. This discussion evolved naturally, but where participants' responses were insubstantial, the lead researcher used elaboration probes  to elicit further detail. After this initial discussion had taken place, the clip was played in full and the participants were asked a series of prompt questions, including “is that decision what you expected?”, “was that the best decision to make?”, and “if not the best, then why do you think the player made this decision?”. The group discussion continued until saturation had been achieved and then the next video clip was played.The interview guide comprised a short introduction into the goal of the study, a brief explanation of the procedure, and then two core questions that were asked after each video clip was paused: (1) “The focus groups were scheduled on separate days. After reiterating the format of the focus group session, the researcher administered pens and paper sheets for participants to record their responses to the video task. Participants viewed each freezeframed clip only once, before privately writing down their answers to the two predetermined questions. This process was used to give the participants time to reflect individually before discussing as a group. Once the participants had written down their answers and discussed the decisions, an extended version of the clip was played to show the outcomes. This task was used as a catalyst for group discussions regarding the reasons for their decisions and the player in the video. Each of the eight video scenario discussions proceeded until the data had reached a saturation point. Once all eight scenarios had been discussed in full, the lead researcher gave an additional opportunity for participants to ask further questions, before concluding the session.Focus groups were audio recorded and transcribed verbatim including syntax. The software used to organize and analyze the qualitative data was Microsoft Excel. To ensure confidentiality and anonymity, participants were allocated individual codes based on the squad they were from and the position they played  and pseudonyms were assigned to players and teams referred to in the video scenarios.timescale and authors involved in parentheses): familiarization with the data , generation of initial codes , searching for themes , reviewing themes , defining and naming themes , and producing the report  , current match context (score and time), visual information , and individual differences . Thematic analysis revealed that participants generated four main options  through situation awareness, which was underpinned and influenced by four primary themes: there is a goal on… I just don't think the lads are going to risk it”. Interestingly, the senior players often assigned percentages to shot selections referring to the likelihood of achieving that shot. For example, participant P4SA stated that “…if you think about it you've got 80–90% chance of getting a point against Team X but like 10% less chance to get a goal against them”, and P2SA stated that “…if you're talking percentages that's not a percentage shot like”. The academy players made no mention of percentage shots or attempted to assign percentages regarding the likelihood of achieving the shot. This demonstrates a more complex and sophisticated awareness of the available options from the expert senior players, compared to the near-expert academy players, whereby they can make future projections about the options  as a plausible option, or recycling  in times of defensive pressure. Differences between the two groups were most notable in the case of attacking scenarios: the academy players often decided to shoot for a Goal (3 points) initially, rather than aiming for a Point (1 point), whereas senior players were more reluctant to select a Goal as their first option; we discuss reasons for this later. For example, participant P5SA stated that “Several factors exist before the commencement of matches, which players in both squads took into account when making their decisions. These were the coach's tactics, the match's importance, and the status of the opposition.an ideal ball here would be a cross-field ball over to a target over here, but then again…it depends on the tactics you are playing against a defensive team” [P6SD]. The senior player identified the best option and then can update this in light of their coach's tactical preferences when making the final decision. In contrast, the less experienced academy players were typically only aware of tactics on a relatively superficial level, with little evidence of comprehension or ability to project different future states. For example, participant P1AD states that “You're just coached that way”, and participant P3AA asserted, “that's what you'd be told to do”. This suggests that Academy players often rely upon the coach's tactics when forming their decisions as they are unable to integrate this with current environmental information.Both academy and senior players identified coach tactics as an influence on their decision-making; however, in line with previous research, the Senior players discussed tactical information in a more sophisticated and detailed manner compared to the academy players  may be more likely to select the riskier option compared to those with lower self-efficacy . The perception of how risky a decision is and which option to select is moderated by the individual's propensity for risk-taking behavior  and pre-match context (opposition status) when forming a decision, but that this is moderated by individual differences .What would you do?”R: “I would bring it back and switch the point of attack”P1SA: “When you're playing can you try telling me at what point do you think ‘ok, we need to change the point of attack'?”R: “Even if you had one more person in there you might not need to switch the play, you could play a long ball in. The fact you don't [have a player in there], he literally has nothing in front of him, so either switch the play or take on your defender” [VISUAL INFORMATION—PLAYER POSITIONING AND FIELD SPACE]P1SA: “He is miles outside his scoring range” [INDIVIDUAL DIFFERENCES—ACTION CAPABILITIES]P2SD: “Does being outside what you deem to be your scoring range effect your decision making?”R: “Yes”All Players: “It is also the amount of Team X defenders he's faced with here [VISUAL INFORMATION—PLAYER POSITIONING AND FIELD SPACE]. You'd look up and just see a sea of Team X players so unless you're confident to take them on and try to work it down the wing for a score then you would have to [switch the play to the other side] [INDIVIDUAL DIFFERENCES—SELF-EFFICACY]. You know you're playing against Team X you should be taking the safe option and playing back to start the attack again” [PRE-MATCH CONTEXT—OPPOSITION STATUS]P4SA: “Does the opposition effect your decision making?”R: “I think you take less risks when you are playing a strong opposition” [INDIVIDUAL DIFFERENCES—RISK-TAKING PROPENSITY]P3SD: “Why?”R: “You have a much higher chance of being turned over with a strong opposition-−9/10 times they will turn you over, so you have to be cautious playing against the best players” [PRE-MATCH CONTEXT—OPPOSITION STATUS]P3SD: “say that's added time and they are down by a point… emotionally he's shooting… it depends on how your feeling and how the game is panning out, but it's the score that makes a difference to your decision”. Similarly, P3SD stated “for me it comes back to what stage of the game it is, like no matter what your range is … if time is up and you can't get it into them then you can only do one thing and try get the shot off ”. These quotes show how in this scenario, the players weigh the current match context, specifically the time and score, in such a strong manner that it overrides the individual differences of self-efficacy and action capabilities when generating the optimal option and ultimately making the final decision. What is unknown from the current study is whether this process is facilitative or detrimental to actual performance. If players are more likely to ignore individual differences, such as action capabilities, in the final stages of a match, or when behind in the score, this would suggest that more shots taken in these conditions would be missed due to poor decision-making. An approach that could be used to examine this is performance analysis of on-pitch decision-making and action execution  and Academy (near-expert) Gaelic football players. Thematic analysis revealed that participants used information sources from three primary sources, namely, pre-match context , current match context (score and time remaining), and visual information . In line with the concept of situation awareness, these sources of information are perceived, comprehended, and used to make future projections and generate options. The Senior players demonstrated a more sophisticated understanding of the various sources of information and were able to integrate them in a more complex manner to make more detailed future projections, compared to the U17 Academy players. This may be due to the extended hours of practice that the senior players had accumulated compared to the U17 Academy players (Baker et al., While the current study benefited from a focus group approach and the unique data generated therefrom, some limitations must be considered. Some participants tended to speak out more frequently, whereas others were content to listen. Moreover, some individuals were more forceful in making their responses and points, and arguably directed the conversations more frequently, whereas others were more easily influenced by those individuals; this was more prevalent in the Academy focus groups. However, this was considered before any of the focus group sessions, and three pilot sessions were conducted with different age groups and skill levels, such that the lead researcher was well-practiced in controlling focus group discussions to ensure that each participant was able to voice their opinions and felt comfortable in doing so. Future research is required to examine the influence of, and interaction between, the various determinants of decision-making that emerged in our data. This, in turn, may provide the basis for interventions designed to enhance interceptive sports athletes' situation awareness, option awareness, and option generation—and, ultimately, their decision-making.The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.The studies involving human participants were reviewed and approved by College of Health, Medicine and Life Sciences Research Ethics Committee, Brunel University London. The participants provided their written informed consent to participate in this study.EM, DPB, DTB, NK, and EC contributed to the conception and design of the study. EM organized the database, performed the statistical analysis, and wrote the first draft of the manuscript. EM, DPB, and DTB conducted the thematic analysis stages. All authors contributed to the manuscript revision, read, and approved the submitted version.