#MyIBDHistory on Twitter: Identifying Disease Characteristics Using Personal Tweets

Inflammatory bowel disease (IBD) is usually classified into Crohn's disease (CD) or ulcerative colitis (UC). Inconclusive cases are diagnosed with IBD unclassified (IBD-U). In 2018, IBD patients shared their disease history on Twitter and signed their tweets with #MyIBDHistory. In this research, we analyzed those tweets and built a logistic regression classifier that predicts patients' IBD type. We constructed tabular classification features and assessed their importance using the regression coefficients and association rules. We identified key features that distinguished CD from UC and used the classifier to predict the disease type of IBD-U patients. Our results correlated with IBD-related research. The two most prominent features that tilted the classification towards CD were suffering from fistulas or nutrient deficiencies. We identified gender differences in disease perspective prior to diagnosis. The research shows that the personal information shared by patients on Twitter can enhance existing medical knowledge regarding their disease

Redes sociais, aplicativos e vídeos para pessoas com estomia intestinal, traqueostomia e cuidadores: das redes informais para as comunidades de prática

This article seeks to describe the evidence on social networks as informal online networks aimed at people with tracheostomy, intestinal ostomy and their caregivers, providing evidence of how online Communities of Practice (CPo) could use social networks, supported self-care apps and videos. An integrative review was carried out in all six stages, with a timeline search between 2010 and 2021 in the LILACS, PUBMED, CINAHL, SCOPUS and Web of Science databases. After analyzing 314 articles, the 17 articles included in the sample were explored in 4 categories, still using the framework of the social scientist Étienne Wenger, who coined the term CPo. Thus, there were only informal networks and not communities of practice, nor synchronous use of technological resources in them, so community patterns were sought in existing informal networks, considering the benefits generated for people with ostomy and caregivers when accessing videos, applications and software from future communities of practice. Finally, the seven principles to cultivate them for the profile studied are exposed, relying on the existing informal networks and a research agenda around this unexplored nationally and internationally.Este artigo busca descrever as evidências sobre redes sociais como redes informais online destinadas a pessoas com traqueostomia, estomia intestinal e seus cuidadores, lançando evidências de como Comunidades de Prática on-line (CPo) poderiam usar redes sociais, aplicativos de autocuidado apoiado e vídeos. Efetuou-se revisão integrativa na totalidade de seis etapas, com busca em linha temporal entre 2010 e 2021 nas bases LILACS, PUBMED, CINAHL, SCOPUS e Web of Science. Após análise de 314 artigos, os 17 artigos inclusos para a amostra foram explorados em 4 categorias empregando ainda o referencial do cientista social Étienne Wenger que cunhou o termo CPo. Destarte, verificaram-se apenas redes informais e não comunidades de prática, tampouco uso síncrono dos recursos tecnológicos nas mesmas, portanto buscaram-se padrões de comunidades nas redes informais existentes ponderando ainda os benefícios gerados as pessoas com estomia e cuidadores ao acessarem vídeos, aplicativos e softwares a partir de futuras comunidades de prática. Por fim, expõem-se os sete princípios para cultivá-las para o perfil estudado contando com as redes informais já existentes e uma agenda de pesquisa em torno deste recorte inexplorado nacionalmente e internacionalmente

Redes sociais, aplicativos e vídeos para pessoas com estomia intestinal, traqueostomia e cuidadores: das redes informais para as comunidades de prática

This article seeks to describe the evidence on social networks as informal online networks aimed at people with tracheostomy, intestinal ostomy and their caregivers, providing evidence of how online Communities of Practice (CPo) could use social networks, supported self-care apps and videos. An integrative review was carried out in all six stages, with a timeline search between 2010 and 2021 in the LILACS, PUBMED, CINAHL, SCOPUS and Web of Science databases. After analyzing 314 articles, the 17 articles included in the sample were explored in 4 categories, still using the framework of the social scientist Étienne Wenger, who coined the term CPo. Thus, there were only informal networks and not communities of practice, nor synchronous use of technological resources in them, so community patterns were sought in existing informal networks, considering the benefits generated for people with ostomy and caregivers when accessing videos, applications and software from future communities of practice. Finally, the seven principles to cultivate them for the profile studied are exposed, relying on the existing informal networks and a research agenda around this unexplored nationally and internationally.Este artigo busca descrever as evidências sobre redes sociais como redes informais online destinadas a pessoas com traqueostomia, estomia intestinal e seus cuidadores, lançando evidências de como Comunidades de Prática on-line (CPo) poderiam usar redes sociais, aplicativos de autocuidado apoiado e vídeos. Efetuou-se revisão integrativa na totalidade de seis etapas, com busca em linha temporal entre 2010 e 2021 nas bases LILACS, PUBMED, CINAHL, SCOPUS e Web of Science. Após análise de 314 artigos, os 17 artigos inclusos para a amostra foram explorados em 4 categorias empregando ainda o referencial do cientista social Étienne Wenger que cunhou o termo CPo. Destarte, verificaram-se apenas redes informais e não comunidades de prática, tampouco uso síncrono dos recursos tecnológicos nas mesmas, portanto buscaram-se padrões de comunidades nas redes informais existentes ponderando ainda os benefícios gerados as pessoas com estomia e cuidadores ao acessarem vídeos, aplicativos e softwares a partir de futuras comunidades de prática. Por fim, expõem-se os sete princípios para cultivá-las para o perfil estudado contando com as redes informais já existentes e uma agenda de pesquisa em torno deste recorte inexplorado nacionalmente e internacionalmente

The Importance of Responsiveness: Improving Health-Related Outcomes Among Ostomates

More than 750,000 individuals in the United States live with an ostomy appliance, and additional 130,000 patients undergo ostomy surgery each year (United Ostomy Association of America, 2018). Although a life-saving procedure, patients confront significant physical (e.g., bowel routine and activity levels) and emotional (e.g., poor body image and depression) challenges that impede the adjustment process. When faced with health-related threats, the transactional action model of stress and coping argues that patients use strategies, such as seeking support, to effectively cope. However, because of perceptions of felt and enacted stigma and health-related uncertainty, some patients conceal ostomy-related issues and limit access to social support. Thus, patients struggle to effectively transition and adapt to life with an ostomy appliance. While the transactional model accounts for patients’ self-disclosure practices, little theoretical development has been offered to explain the importance of others’ responsiveness in shaping health-related quality of life. The purpose of this study is to better understand the ways self-disclosure about one’s ostomy to others, and the perception of responsiveness to the disclosure affect ostomy patients’ perceptions of social support, coping, and health-related quality of life. Specifically, this study proposes a theoretical model that incorporates perceived partner responsiveness within the transactional model of stress and coping framework. Survey data was collected from 375 ostomy patients. Path analysis was conducted to test the hypothesized model. Although the proposed model did not demonstrate adequate fit, analyses identified several direct and indirect factors influencing ostomy patients’ health-related quality of life. Most importantly, findings revealed that ostomates’ self-disclosure and health-related quality of life is mediated by perceived partner responsiveness. This study suggests that for patients perceived reactions that are responsive are paramount in improving health-related quality of life. To account for this relationship, this study this study proposes the disclosure-responsiveness theor

Text4IBD: Development, feasibility, and acceptability of an eHealth intervention to reduce distress among people with inflammatory bowel disease

Inflammatory bowel disease (IBD) is a category of lifelong chronic illnesses that affect the digestive tract, including Crohn’s disease and ulcerative colitis. IBD has no cure and requires a high degree of self-management to keep symptoms in remission. Because of the chronic, relapsing-remitting nature of IBD, in addition to the stigma that coincides with the disease, people with IBD are at increased risk for distress. This dissertation sought to better understand experiences of and reduce disease-related distress among people with IBD through the use of social media data and an eHealth intervention. Computational analysis of over 80,000 public social media posts about IBD from Reddit and Twitter identified prevalent topics about IBD and distress, such as symptoms and nutrition. These findings informed the development of “Text4IBD”—a text messaging program designed for this dissertation. The program sent daily support messages about disease self-management to participants (N = 114) who were diagnosed with IBD over the course of a 2-week intervention. Participants were recruited to evaluate the program in a single group, pretest-posttest study in late 2020. Primary outcomes were IBD-related distress and intervention feasibility and acceptability. Secondary outcomes were self-efficacy, outcome expectations, perceived IBD support, use of coping strategies, and medication adherence. Analyses compared pretest-posttest changes in study outcomes and also examined participant quantitative and qualitative evaluations of the intervention (posttest only). Pre-post results showed participants reduced their IBD-related distress and improved most secondary outcomes. In addition, nearly all participants were receptive to the intervention and perceived the program as acceptable. Results from this work highlight the feasibility of text messaging as a useful eHealth medium for providing information and support about IBD self-management, particularly for those who may struggle with disease-related distress. This dissertation also adds to literature through its interdisciplinary application of social media analysis and eHealth as complementary methods in the design, recruitment, and implementation of a health communication intervention. Future research should build on this work by integrating and evaluating similar tools in subsequent studies aimed at improving quality of life among those with IBD.Doctor of Philosoph

Psychological needs and support following stoma surgery: exploring the perspectives of young adults and healthcare professionals

Stoma surgery is commonly described as a life-changing procedure, due to the radical bodily changes and related psychosocial challenges it brings about; especially so for individuals with Inflammatory Bowel Disease (IBD) who may undergo this surgery at a relatively young age. Although the psychological impact of stoma formation is emphasised in the literature, how stoma-related psychological needs are addressed remains unexplored. This study explores the perspectives of young adults with a stoma and healthcare professionals about access to psychological support within and beyond the healthcare system. In-depth interviews were conducted with 13 young adults with a stoma (aged 18-29 years) and 15 healthcare professionals (including colorectal surgeons, gastroenterologists, specialist nurses in IBD and stoma care, and general practitioners). Data collection and analysis were informed by constructivist grounded theory and narrative inquiry. Most young adults reported a positive transformation following stoma surgery, explicated through the concept of ‘biographical renewal’, which is characterised by physical relief from IBD symptoms and a reconfiguration of self and biography. Psychological distress, however, was sometimes found to co-exist alongside these transformations. Several barriers to the identification and management of psychological problems were identified on patient, professional, and systemic levels. Whilst peer support was recognised as a valuable support avenue, preference was expressed for these psychological needs to be met by healthcare services. Findings indicate the need for clinicians to encourage disclosure of psychological concerns following stoma surgery. The development of more effective care pathways, which include psychological services, as well as more age-appropriate peer support, are recommended to enhance access to psychological support for young adults with a stoma