Capturing Emerging Experiential Knowledge for Vaccination Guidelines Through Natural Language Processing: Proof-of-Concept Study.

BACKGROUND: Experience-based knowledge and value considerations of health professionals, citizens, and patients are essential to formulate public health and clinical guidelines that are relevant and applicable to medical practice. Conventional methods for incorporating such knowledge into guideline development often involve a limited number of representatives and are considered to be time-consuming. Including experiential knowledge can be crucial during rapid guidance production in response to a pandemic but it is difficult to accomplish. OBJECTIVE: This proof-of-concept study explored the potential of artificial intelligence (AI)-based methods to capture experiential knowledge and value considerations from existing data channels to make these insights available for public health guideline development. METHODS: We developed and examined AI-based methods in relation to the COVID-19 vaccination guideline development in the Netherlands. We analyzed Dutch messages shared between December 2020 and June 2021 on social media and on 2 databases from the Dutch National Institute for Public Health and the Environment (RIVM), where experiences and questions regarding COVID-19 vaccination are reported. First, natural language processing (NLP) filtering techniques and an initial supervised machine learning model were developed to identify this type of knowledge in a large data set. Subsequently, structural topic modeling was performed to discern thematic patterns related to experiences with COVID-19 vaccination. RESULTS: NLP methods proved to be able to identify and analyze experience-based knowledge and value considerations in large data sets. They provide insights into a variety of experiential knowledge that is difficult to obtain otherwise for rapid guideline development. Some topics addressed by citizens, patients, and professionals can serve as direct feedback to recommendations in the guideline. For example, a topic pointed out that although travel was not considered as a reason warranting prioritization for vaccination in the national vaccination campaign, there was a considerable need for vaccines for indispensable travel, such as cross-border informal caregiving, work or study, or accessing specialized care abroad. Another example is the ambiguity regarding the definition of medical risk groups prioritized for vaccination, with many citizens not meeting the formal priority criteria while being equally at risk. Such experiential knowledge may help the early identification of problems with the guideline's application and point to frequently occurring exceptions that might initiate a revision of the guideline text. CONCLUSIONS: This proof-of-concept study presents NLP methods as viable tools to access and use experience-based knowledge and value considerations, possibly contributing to robust, equitable, and applicable guidelines. They offer a way for guideline developers to gain insights into health professionals, citizens, and patients' experience-based knowledge, especially when conventional methods are difficult to implement. AI-based methods can thus broaden the evidence and knowledge base available for rapid guideline development and may therefore be considered as an important addition to the toolbox of pandemic preparedness.

Exploring the shared decision making process of caesarean sections at a teaching hospital in Ghana: a mixed methods study.

BACKGROUND: Caesarean section (CS) rates are rising. Shared decision making (SDM) is a component of patient-centered communication which requires adequate information and awareness. Women in Ghana have varying perceptions about the procedure. We sought to explore mothers' knowledge. perceptions and SDM-influencing factors about CSs. METHODS: A transdisciplinary mixed-methods study was conducted at the maternity unit of Korle-Bu Teaching Hospital in Accra, Ghana from March to May, 2019. Data collection was done in four phases: in-depth interviews (n = 38), pretesting questionnaires (n = 15), three focus group discussions (n = 18) and 180 interviewer administered questionnaires about SDM preferences. Factors associated with SDM were analyzed using Pearson's Chi-square test and multiple logistic regression. RESULTS: Mothers depicted a high level of knowledge regarding medical indications for their CS but had low level of awareness of SDM. The perception of a CS varied from dangerous, unnatural and taking away their strength to a life-saving procedure. The mothers had poor knowledge about pain relief in labour and at Caesarean section. Health care professionals attributed the willingness of mothers to be involved in SDM to their level of education. Husbands and religious leaders are key stakeholders in SDM. Insufficient consultation time was a challenge to SDM according to health care professionals and post-partum mothers. Women with parity ≥ 5 have a reduced desire to be more involved in shared decision making for Caesarean section. AOR = 0.09, CI (0.02-0.46). CONCLUSION: There is a high knowledge about the indications for CS but low level of awareness of and barriers to SDM. The fewer antenatal care visits mothers had, the more likely they were to desire more involvement in decision making. Aligned to respectful maternity care principles, greater involvement of pregnant women and their partners in decision making process could contribute to a positive pregnancy experience. Education, including religious leaders and decision- making tools could contribute to the process of SDM.

Vulnerabilities Prompting Use of Technology and Screen by Mothers of Autistic Children in India: Lived Experiences and Comparison to Scientific Literature.

Technology and screen media has its place in every home, yet the influences of the same are less known. This research aims to explore the vulnerabilities that prompt the mothers to use screen media for their children, prior to a diagnosis of autism for their child. It also aims to explore literature the influence of screen media on speech and language development in children. This study combined semi-structured interviews with 16 mothers of autistic children in Southern India and a scoping literature review that resulted in 24 articles. The literature refers to a positive influence when co-viewing with the child, and it predominantly highlights improvements in speech and not in language. The interviews revealed that screens were used as a means of support, a language and learning development tool, or as a calming technique. Thus, the study shows that the mothers resorted to screen use for their children more out of helplessness, and not as an informed choice. Mothers of autistic children clearly express their vulnerabilities and indicate feelings of being lost without advice, with regard to use of screen-time. This suggests a need for more research into how they can be supported.

Ethnic minority experiences of mental health services in the Netherlands: an exploratory study.

OBJECTIVE: Despite considerable spending on mental health in the Netherlands, access to mental health remains suboptimal, particularly for migrants and ethnic minorities. Addressing the growing mental health service needs requires an understanding of the experiences of all stakeholders, specifically minority populations. In this exploratory study, we sought to understand the perspectives and experience of mental health services by migrants and their provider. An exploratory qualitative study was conducted with 10 participants, five of whom were mental health service providers and the other five were clients who had utilized or currently utilized MHS in the Netherlands. RESULTS: We identified three themes that explained the experiences of clients and providers of MHS in the Netherlands (i) Perceptions of mental health service utilization (ii) Mismatch between providers (iii) Availability of services. The most significant factor that influenced participants experience was a service provider of a different cultural background. Minority populations accessing mental health services have multiple needs, including an expressed need for cultural understanding. Their experiences of mental health services could be improved for minority populations by addressing the diversity of health providers.

Unemployment in women with psychosocial disabilities during the COVID-19 pandemic: Lessons from Tana River County, Kenya.

In low-income settings, the informal economy is a practical alternative to work and employment for persons with disabilities. However, the COVID-19 pandemic negatively affected the informal economy. This study aimed to explore the experiences of women with psychosocial disabilities in Kenya during the pandemic. We found that the pandemic worsened their experiences of work and employment, and they did not receive any social welfare or support from the government. Our findings suggest that pandemic management must adopt inclusive and context-sensitive approaches that support persons with psychosocial disabilities. Social welfare and protection for persons with disabilities are relevant for socio-economic empowerment and inclusion.

Complex Interventions Deserve Complex Evaluations: A Transdisciplinary Approach to Evaluation of a Preventive Personalized Medicine Intervention.

Non-communicable diseases (NCDs) are the largest cause of disability and death globally. The human and financial costs of NCDs have raised questions of sustainability for many health systems. Personalized, preventive health interventions are an innovative way to address NCDs, but it is difficult to measure their effectiveness using standard evaluation methods. This article describes a novel approach to evaluation by coupling transdisciplinary methods with realist theory to design and pilot a health outcomes evaluation for a personalized medicine approach to NCD prevention in Istanbul, Turkey. Research and practice stakeholders contributed to study design, research questions, validation of results, and recommendations through interactive workshops, consistent dialogue, and reflection. They co-created a customized outcome measurement framework and recommendations that promote sustainability and continuous improvement of future evaluations. The participatory methods helped resolve the dichotomy between patient, practitioner, and researcher focus in the evaluation and improved stakeholders' data literacy. This research contributes to the body of evidence advocating for the use of non-standard methods such as transdisciplinary research to evaluate the effectiveness of complex interventions. The results of the pilot evaluation are also presented as a case study.

Addressing health needs of the homeless in Delhi: Standardising on the issues of Street Medicine practice.

Due to barriers in accessing and using healthcare services, a large proportion of the care homeless populations receive comes from informal providers. In Delhi, one such informal programme, called Street Medicine, provides healthcare outreach to homeless communities. Clinical practice guidelines are set to be developed for Street Medicine teams in India and form the object of this research. This study uses a social-ecological model to understand the barriers facing Street Medicine teams and the homeless as they attempt to address the latter's healthcare needs; coupling it with an analytical approach which situates these barriers as the issues within practice through which standardisation can take place. A qualitative inquiry, comprising three months of observations of Street Medicine outreach and interviews with over 30 key informants, was conducted between April and July 2018. The analysis identified novel barriers to addressing the needs of homeless individuals, which bely a deficit between the design of health and social care systems and the agency homeless individuals possess within this system to influence their health outcomes. These barriers - which include user-dependent technological inscriptions, collaborating with untargeted providers and the distinct health needs of homeless individuals - are the entry points for standardising, or opening up, Street Medicine practices .

The role of risk perception and affective response in the COVID-19 preventive behaviours of young adults: a mixed methods study of university students in the Netherlands.

OBJECTIVES: Due to an increased infection rate among young adults, they need to adhere to the preventive guidelines to stop the spread of COVID-19 and protect vulnerable others. The purpose of this mixed methods study was to explore the role of risk perception and affective response in the preventive behaviours of young adults during the COVID-19 outbreak. SETTING: This study followed a convergent mixed methods design, in which a quantitative online survey (n=1081) and 10 qualitative in-depth semistructured video interviews were conducted separately in the Netherlands during April-August 2020. PARTICIPANTS: 1081 participants filled in the online survey, and 10 participants participated in the interviews. Eligibility criteria included being a university student. PRIMARY AND SECONDARY OUTCOME MEASURES: Data on risk perception, affective response, that is, worry, and adherence to preventive guidelines were combined and analysed during this study. There were no secondary outcome measures. RESULTS: The results showed that young adults perceived their risk as low. Their affective response for their own well-being was also low; however, their affective response was high with regards to vulnerable others in their surroundings. Due to their high impersonal risk perception (ie, perceived risk to others) and high affective response, young adults adhered to most preventive guidelines relatively frequently. However, young adults sometimes neglected social distancing due to the negative effects on mental health and the uncertainty of the duration of the situation. CONCLUSIONS: In conclusion, high impersonal risk perception and high affective response regarding others are key motivators in young adults' preventive behaviour. To maximise adherence to the preventive guidelines, risk communication should put emphasis on the benefits to vulnerable others' health when young adults adhere to the preventive guidelines.

Orthorexia nervosa and Instagram: exploring the Russian-speaking conversation around #opтopeкcия.

This mixed-methods study explored the conversation around orthorexia nervosa (ON) on Instagram from a Russian-speaking perspective. Two quantitative data sources were implemented; a comparative content analysis of posts tagged with #opтopeкcия (n = 234) and #orthorexia (n = 243), and an online questionnaire completed by Russian-speakers (n = 96) sharing ON-related content on Instagram. Additionally, five questionnaire participants were interviewed, four of which identified with having (had) ON. Russian-speakers who share ON-related content on Instagram are primarily female, around their late-twenties, and prefer Instagram over other platforms. They describe people with ON as obsessed with correct eating, rather than healthy or clean eating. Instagram appears to have a dual effect; it has the potential to both trigger the onset of ON and encourage recovery. Positive content encourages a healthy relationship with food, promotes intuitive eating, and spread recovery advice. Harmful content, in turn, emphasizes specific diet and beauty ideals. Russian-speaking users mainly post pictures of food, followed by largely informative text that explains what ON is, and what recovery may look like. Their reasons for posting ON-related content are to share personal experiences, support others in recovery, and raise awareness about ON. Two main target audiences were people unaware of ON and people seeking recovery support. The relationship between ON and social media is not strictly limited to the global north. Thus, it may be valuable to further investigate non-English-speaking populations currently underrepresented in ON research.Level of evidence: Level V, descriptive study.

The #orthorexia community on Instagram.

PURPOSE: This mixed-methods study delved into the relationship between orthorexia nervosa (ON) and Instagram. METHODS: Two quantitative data sources were used: content analysis of pictures using #orthorexia (n = 3027), and an online questionnaire investigating the experience of ON and the use of Instagram of people sharing ON-related content on Instagram (n = 185). Following, interviews (n = 9) were conducted with people posting ON-related content on Instagram and self-identifying as having (had) ON. RESULTS: People who share ON-related content on Instagram were found to be primarily young women (questionnaire = 95.2% females, mean age 26.2 years; interviews = 100% females, mean age 28.4 years), who were found to be heavy social media users and favor Instagram over other platforms. Questionnaire respondents agreed in defining ON as an obsession with a diet considered healthy, with bio-psycho-social negative consequences, though those who self-identified as having (had) ON were more likely to point out the negative impairments of ON. Interviewees deemed Instagram partially responsible for the development of ON. Instead, they agreed that Instagram encourages problem realization. Content analysis showed that ON is encoded in pictures of 'food', 'people', 'text' and 'other.' Interviewees revealed that they started posting to recover, share information, help others, and they felt inspired to post by other accounts. A sense of belonging to the #orthorexia community emerged, where people share values and ideals, and seek validation from others. CONCLUSION: Conversations around #orthorexia on Instagram generate supportive communities aiding recovery. Individuals use Instagram for helping others and themselves recovering from ON. Understanding how people help each other, manage their health, cope with symptoms, and undertake recovery can inform the implementation of therapeutic interventions for ON. LEVEL OF EVIDENCE: Level III, evidence obtained from well-designed cohort or case-control analytic studies.

Assistive Technology Use and Provision During COVID-19: Results From a Rapid Global Survey.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic has impacted all segments of society, but it has posed particular challenges for the inclusion of persons with disabilities, those with chronic illness and older people regarding their participation in daily life. These groups often benefit from assistive technology (AT) and so it is important to understand how use of AT may be affected by or may help to mitigate the impacts of COVID-19. Objective: The objectives of this study were to explore the how AT use and provision have been affected during the initial stages of the COVID-19 pandemic, and how AT policies and systems may be made more resilient based on lessons learned during this global crisis. METHODS: This study was a rapid, international online qualitative survey in the 6 United Nations (UN) languages (English, French, Spanish, Russian, Arabic, Mandarin Chinese) facilitated by extant World Health Organization (WHO) and International Disability Alliance networks. Themes and subthemes of the qualitative responses were identified using Braun and Clarke's 6-phase analysis. RESULTS: Four primary themes were identified in in the data: Disruption of Services, Insufficient Emergency Preparedness, Limitations in Existing Technology, and Inadequate Policies and Systems. Subthemes were identified within each theme, including subthemes related to developing resilience in AT systems, based on learning from the pandemic. CONCLUSION: COVID-19 has disrupted the delivery of AT services, primarily due to infection control measures resulting in lack of provider availability and diminished one-to-one services. This study identified a need for stronger user-centred development of funding policies and infrastructures that are more sustainable and resilient, best practices for remote service delivery, robust and accessible tools and systems, and increased capacity of clients, caregivers, and clinicians to respond to pandemic and other crisis situations.

"When Are We Going to Hold Orthorexia to the Same Standard as Anorexia and Bulimia?" Exploring the Medicalization Process of Orthorexia Nervosa on Twitter.

This study contributes to understanding medicalization on social media, by using Conrad's concept of medicalization as a theoretical framework to explore the conversation about Orthorexia Nervosa (ON) on Twitter. The aim of this mixed-methods study was twofold: the quantitative component aimed to provide descriptive information on the type of tweets and users, as well as on the network structure of the ON-related conversation on Twitter, while the qualitative component aimed to explore how the medicalization of ON unfolds on Twitter by performing a thematic analysis of original tweets about ON. Quantitative descriptive findings show that the most popular hashtags associated with orthorexia include #rdchat, #psychology and #doctors, which hints to a link between discourses around ON and the medical profession. Among the most active, prominent and visible users are news accounts, a registered dietitian, a researcher, a professor and an editor. Qualitative thematic analysis shed light on the discursive process of medicalization. Some users bring about medicalization by approaching ON as a medical entity; in contrast, other users resist medicalization by describing ON as a social phenomenon. A discursive struggle emerges, where certain individuals feel confused around what constitutes ON. This leads to stigmatization of non-traditional diets like veganism, which in turn triggers complaints regarding over-medicalization. As the first Twitter investigation on ON, this study serves the purpose of providing insights into how an emerging disorder develops in society in a time of social media.

How do Positive Deviants Overcome Health-Related Stigma? An Exploration of Development of Positive Deviance Among People With Stigmatized Health Conditions in Indonesia.

A constructivist grounded theory approach was used to understand how some people living with stigmatized health conditions develop positive deviance to overcome stigma. We examined interviews from 13 identified positive deviants living with four different stigmatized health conditions (HIV, leprosy, schizophrenia, and diabetes) in Indonesia. Positive deviance develops in the form of psychological empowerment through improvement of self-belief and perception (intrapersonal component), development of understanding and skill to exert control in life (interactional component), and self-discovery of successful behaviors and strategies to avert stigma (behavioral component). Positive deviants, after being empowered, start empowering others affected by sharing their knowledge and fostering social awareness and acceptance. The findings revealed the presence of problem-solving ability and agency within the community of stigmatized individuals in Indonesia and warrant researchers to partner with the community to expedite the diffusion of transferable positive deviant strategies within and outside the communities.

YOUTH AND MENTAL HEALTH: LIFE SATISFACTION, WELLBEING, AND SOCIETAL PARTICIPATION IN THE CONTEXT OF A TRANSITIONING STATE.

OBJECTIVE: The aim: Youth are important societal actors. This is especially relevant when considering countries in transition such as Ukraine. This study examines well-being and societal participation - both key signifiers of mental health - of youth in Ukraine. PATIENTS AND METHODS: Materials and methods: A descriptive, cross-sectional survey with open and closed questions was utilized (n= 1562). Participants were asked to reflect on social concerns and to evaluate their well-being in different life spheres and their own mental health through activities such as interpersonal communication, self-perception and relaxation. RESULTS: Results: Students showed positive mental health through their daily activities, but mental health indicated by life satisfaction ranged according to activities, age, gender and environment. Willingness to volunteer and connection to life can be attributed to feelings of learned helplessness in the face of problems deemed too complex, and participation in volunteering was linked to positive mental health and feelings of empowerment. CONCLUSION: Conclusions: The study contributes to understanding the status of Ukrainian youth's mental health and the ways in which mental health is expressed. The results of the research assist in identifying avenues to reduce the impact of social frustration, improve mental health of citizens of transitional countries, and encourage social stability.

Improving work and employment opportunities for women with psychosocial disabilities: an action research protocol.

In Kenya, employment rates for persons with disabilities are very low and those with psychosocial disabilities have even more dismal rates of employment. This situation has negative impact on the individual's recovery, quality of life, mental and physical health. The systemic exclusion of persons with psychosocial disabilities in work and employment disproportionately affects women. The aim of this study is to test the feasibility of disability inclusion training to improve work and employment opportunities for women with psychosocial disabilities in Tana River County, Kenya. The study will adopt a mixed methods research design using action research approach. A sample of women with psychosocial disabilities will be trained using a researcher designed disability inclusion training manual, while employers and other stakeholders will be trained on inclusive employment. Trainings will be tailored to suit different employers and for different types of psychosocial disabilities. Interactive learning and linking sessions involving the two groups and process evaluations will be conducted at different time points to measure the impact of the intervention. Findings from this pilot study will inform future research on work and employability programs for rural women with psychosocial disabilities. The study protocol was approved by Maseno University Ethics Review Committee (MUERC/00851/20). Findings from this study will be disseminated through conference presentations and scientific publications in peer reviewed journals.

Developmental pathway of orthorexia nervosa: Factors contributing to progression from healthy eating to excessive preoccupation with healthy eating. Experiences of Dutch health professionals.

Orthorexia nervosa (ON) has in recent years attracted attention, but the scarcity of empirical research on the matter generates uncertainty about its progression. This study aims to gain insight into the developmental pathway of ON and factors contributing to it, to establish its etiology. In order to gain insights into health professionals' experience with patients that they identified as suffering from ON, this study adopted mixed methods, with a sequential exploratory design: first, semi-structured interviews (n = 10) were conducted; following, a questionnaire (n = 101) was administered online. Nutritionists, psychologists, psychotherapists, and support workers with experience in treating eating disorders in the Netherlands were the study's target group. Results shed light on environmental factors influencing the development of ON (e.g. pseudoscientific nutritional experts on social media), baseline risks (e.g. high level of education), initiating events (e.g. experiencing a break up), symptoms (e.g. feelings of depression and anxiety), diagnosis and type of treatment administered (e.g. cognitive-behavioral therapy). The current study is unique in its use of health professionals' experiential knowledge to assess how ON develops and who typically develops it. Furthermore, it contributes to the sparse literature on potential ways to treat ON. More top-down investigations into health professionals' experiences are encouraged as the literature on ON thickens.

Assessing the prospect of a common health-related stigma reduction response: Cross-perspectives of people living with stigmatised health conditions in Indonesia.

ABSTRACTThis study explored the possibility of a common health-related stigma reduction intervention among people living with HIV, leprosy, schizophrenia and diabetes in Indonesia by assessing their perspectives towards others with the same (within group) and different health conditions (across groups), and willingness to participate in such a program. This mixed-methods study was conducted in West Java, Indonesia between March and June 2018. Eighty participants completed a survey with social distance scale (SDS), while 12 focus group discussion were conducted. Participants with HIV, leprosy and diabetes reported lower within-group SDS scores (4.14 ± 3.65; 4.25 ± 3.95; 7.23 ± 5.31, respectively) while those with schizophrenia reported the highest within-group SDS score (7.76 ± 4.63). Participants with diabetes reported a twofold higher across-group SDS score towards people with the other three health conditions (p < 0.05). The qualitative findings showed that the perception of participants towards one another was shaped by knowledge, understanding and relatedness to the experience of living with health-related stigma. Overall, participants supported the idea of a common stigma reduction intervention for different health conditions, but recommended step-wise implementation of such interventions. Accordingly, this study recommends piloting a common stigma reduction intervention with special focus on fostering understanding, awareness and empathy between people living with different health conditions.

Intersectionality and health-related stigma: insights from experiences of people living with stigmatized health conditions in Indonesia.

BACKGROUND: Health-related stigma is a complex phenomenon, the experience of which intersects with those of other adversities arising from a diversity of social inequalities and oppressive identities like gender, sexuality, and poverty - a concept called "intersectionality". Understanding this intersectionality between health-related stigma and other forms of social marginalization can provide a fuller and more comprehensive picture of stigma associated with health conditions. The main objective of this paper is to build upon the concept of intersectionality in health-related stigma by exploring the convergence of experiences of stigma and other adversities across the intersections of health and other forms of social oppressions among people living with stigmatized health conditions in Indonesia. METHODS: This qualitative study interviewed 40 people affected by either of four stigmatizing health conditions (HIV, leprosy, schizophrenia, and diabetes) in Jakarta and West Java, Indonesia between March and June 2018. Data was analyzed thematically using an integrative inductive-deductive framework approach. RESULTS: The main intersectional inequalities identified by the participants were gender and socioeconomic status (n = 21), followed by religion (n = 13), age (n = 11), co-morbidity (n = 9), disability (n = 6), and sexuality (n = 4). Based on these inequalities/identities, the participants reported of experiencing oppression because of prevailing social norms, systems, and policies (macro-level), exclusion and discrimination from societal actors (meso-level), and self-shame and stigma (micro-level). While religion and age posed adversities that negatively affected participants in macro and meso levels, they helped mitigate the negative experiences of stigma in micro level by improving self-acceptance and self-confidence. CONCLUSION: This study uncovered how the experience of health-related stigma intersects with other oppressions originating from the various social inequalities in an individual's life. The findings highlight the importance of acknowledging and understanding the multi-dimensional aspect of lives of people living with stigmatized health conditions, and warrant integrated multi-level and cross-cutting stigma reduction interventions to address the intersectional oppressions they experience.