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Item Adolescents’ Perceptions of Functional Seizure Self-Management Strategies, Facilitators, and Barriers in the School Environment(Slack, 2023) Tanner, Andrea L.; von Gaudecker, Jane R.; Buelow, Janice M.; Oruche, Ukamaka M.; Miller, Wendy R.; School of NursingAdolescents with functional (psychogenic nonepileptic) seizures encounter many struggles within the school environment, including stress, bullying, stigmatization, and accusations of faking seizure events. Mental health nurses and school personnel are poised to support school-based self-management; unfortunately, to date, no evidence exists to detail effective school-based self-management strategies for adolescents with functional seizures. Therefore, in the current qualitative study, we examined adolescents' functional seizure self-management, perceived effectiveness, and facilitators and barriers using semi-structured interviews analyzed using content analysis. We interviewed 10 adolescent females aged 12 to 19 years. Themes of proactive (prior to seizure warning symptoms) and reactive (after seizure warning symptoms) self-management, involving protection, perseverance, and progress monitoring, emerged. Adolescents perceived proactive strategies as primarily effective, whereas reactive strategies were less effective. Adolescents identified school nurses and personnel, family, and peers as facilitators and barriers to self-management. Mental health nurses are positioned to provide care, co-create plans, and advocate for adolescents with functional seizures in collaboration with school nurses and personnel.Item Big Data and Dysmenorrhea: What Questions Do Women and Men Ask About Menstrual Pain?(Liebert, 2018-10) Chen, Chen X.; Groves, Doyle; Miller, Wendy R.; Carpenter, Janet S.; School of NursingBackground: Menstrual pain is highly prevalent among women of reproductive age. As the general public increasingly obtains health information online, Big Data from online platforms provide novel sources to understand the public's perspectives and information needs about menstrual pain. The study's purpose was to describe salient queries about dysmenorrhea using Big Data from a question and answer platform. Materials and Methods: We performed text-mining of 1.9 billion queries from ChaCha, a United States-based question and answer platform. Dysmenorrhea-related queries were identified by using keyword searching. Each relevant query was split into token words (i.e., meaningful words or phrases) and stop words (i.e., not meaningful functional words). Word Adjacency Graph (WAG) modeling was used to detect clusters of queries and visualize the range of dysmenorrhea-related topics. We constructed two WAG models respectively from queries by women of reproductive age and bymen. Salient themes were identified through inspecting clusters of WAG models. Results: We identified two subsets of queries: Subset 1 contained 507,327 queries from women aged 13–50 years. Subset 2 contained 113,888 queries from men aged 13 or above. WAG modeling revealed topic clusters for each subset. Between female and male subsets, topic clusters overlapped on dysmenorrhea symptoms and management. Among female queries, there were distinctive topics on approaching menstrual pain at school and menstrual pain-related conditions; while among male queries, there was a distinctive cluster of queries on menstrual pain from male's perspectives. Conclusions: Big Data mining of the ChaCha® question and answer service revealed a series of information needs among women and men on menstrual pain. Findings may be useful in structuring the content and informing the delivery platform for educational interventions.Item Big Data and Dysmenorrhea: What Questions Do Women and Men Ask About Menstrual Pain?(Mary Ann Liebert, 2018-10) Chen, Chen X.; Groves, Doyle; Miller, Wendy R.; Carpenter, Janet S.; School of NursingBACKGROUND: Menstrual pain is highly prevalent among women of reproductive age. As the general public increasingly obtains health information online, Big Data from online platforms provide novel sources to understand the public's perspectives and information needs about menstrual pain. The study's purpose was to describe salient queries about dysmenorrhea using Big Data from a question and answer platform. MATERIALS AND METHODS: We performed text-mining of 1.9 billion queries from ChaCha, a United States-based question and answer platform. Dysmenorrhea-related queries were identified by using keyword searching. Each relevant query was split into token words (i.e., meaningful words or phrases) and stop words (i.e., not meaningful functional words). Word Adjacency Graph (WAG) modeling was used to detect clusters of queries and visualize the range of dysmenorrhea-related topics. We constructed two WAG models respectively from queries by women of reproductive age and bymen. Salient themes were identified through inspecting clusters of WAG models. RESULTS: We identified two subsets of queries: Subset 1 contained 507,327 queries from women aged 13-50 years. Subset 2 contained 113,888 queries from men aged 13 or above. WAG modeling revealed topic clusters for each subset. Between female and male subsets, topic clusters overlapped on dysmenorrhea symptoms and management. Among female queries, there were distinctive topics on approaching menstrual pain at school and menstrual pain-related conditions; while among male queries, there was a distinctive cluster of queries on menstrual pain from male's perspectives. CONCLUSIONS: Big Data mining of the ChaCha® question and answer service revealed a series of information needs among women and men on menstrual pain. Findings may be useful in structuring the content and informing the delivery platform for educational interventions.Item Chronic Disease Self-Management: A Hybrid Concept Analysis(Elsevier, 2015-03) Miller, Wendy R.; Lasiter, Sue; Bartlett Ellis, Rebecca J.; Buelow, Janice M.; School of NursingBACKGROUND: Chronic diseases require chronic disease self-management (CDSM). Existing CDSM interventions, while improving outcomes, often do not lead to long-lasting effects. To render existing and new CDSM interventions more effective, an exploration of the concept of CDSM from both the literature and patient perspectives is needed. The purpose of this study was to describe the current conceptualization of CDSM in the literature, identify potential inadequacies in this conceptualization based on a comparison of literature- and patient-based CDSM descriptions, and to offer a more comprehensive definition of CDSM. METHODS: A hybrid concept analysis was completed. DISCUSSION: In the literature, CDSM is defined as behaviors influenced by individual characteristics. Patients in the fieldwork phase discussed aspects of CDSM not well represented in the literature. CONCLUSIONS: CDSM is a complex process involving behaviors at multiple levels of a person's environment. Pilot work to develop and test CDSM interventions based on both individual and external characteristics is needed.Item Discussing Sudden Unexpected Death in Epilepsy (SUDEP) with Patients: Practices of Health-Care Providers(Elsevier, 2014-03) Miller, Wendy R.; Young, Neicole; Friedman, Daniel; Buelow, Janice M.; Devinsky, Orin; IU School of NursingItem Epilepsy self-management during a pandemic: Experiences of people with epilepsy(Elsevier, 2020-06-25) Miller, Wendy R.; Von Gaudecker, Jane; Tanner, Andrea; Buelow, Janice M.; School of NursingThe purpose of this descriptive study was to, from the perspective of adult people with epilepsy (PWE) and caregivers of PWE, explore the effects of the current pandemic and resulting societal changes on epilepsy self-management. Ninety-four respondents completed a mixed-methods quantitative and qualitative survey focused on their epilepsy self-management experiences during the coronavirus disease-19 (COVID-19) pandemic. Respondents noted significant disruption in epilepsy self-management. Lack of ability to obtain medications or see epilepsy providers, as well as increased stress, social isolation, and changes in routine were all reported as troublesome, and more than one-third of the sample reported an increase in seizure frequency since the onset of the pandemic. Suggestions are given regarding how to support PWE during future COVID-19 outbreaks and to better prepare PWE and their caregivers for any life-altering events, such as a pandemic, with robust self-management skills that will allow them to maintain the highest level of function possible.Item Evaluation of emergency department-based seizure and epilepsy education: Exploring the need for early epilepsy self-management intervention(Elsevier, 2021) Miller, Wendy R.; Wion, Rachel K.; Eads, Pam; School of NursingMany people with epilepsy (PWE) present to the emergency department setting with their first seizure and must wait weeks or months to be seen by a specialized epilepsy provider. The time period between presentation of first seizure and entry into specialized care can be extremely stressful and precarious for PWE and their families. In order to achieve optimal outcomes, epilepsy self-management should be initiated as soon as possible, including in the emergency department setting. The purpose of this study was to review and evaluate existing epilepsy/seizure-related education materials provided to patients in the emergency room setting to determine the degree to which these materials prepare patients and their families for self-management of epilepsy, or potential epilepsy, during the interim between emergency department discharge and entry into specialized care. Twenty emergency department epilepsy/seizure patient discharge education materials were collected and evaluated using a rubric based on the framework of the Epilepsy Self-Management Scale (AESMMI). Materials were rated on a 0-3 scale based on the degree to which self-management education, resources, and skill building were included. The mean score of materials reviewed was quite low at just 10.4, with a score of 33 possible. Also concerning is that the materials scored lowest in the domains of social support, stress management, and coping, all of which are extremely important areas for PWE, especially in the early phases of the disease when patients and families are adjusting. Findings highlight the need for development of robust self-management interventions tailored to PWE in the transition period from presentation of first seizure to entry to specialized care.Item Finding the Patient’s Voice Using Big Data: Analysis of Users’ Health-Related Concerns in the ChaCha Question-and-Answer Service (2009–2012)(JMIR, 2016) Priest, Chad; Knopf, Amelia; Groves, Doyle; Carpenter, Janet S.; Furrey, Christopher; Krishnan, Anand; Miller, Wendy R.; Otte, Julie L.; Palakal, Mathew; Wiehe, Sarah E.; Wilson, Jeffrey S.; IU School of NursingBackground: The development of effective health care and public health interventions requires a comprehensive understanding of the perceptions, concerns, and stated needs of health care consumers and the public at large. Big datasets from social media and question-and-answer services provide insight into the public’s health concerns and priorities without the financial, temporal, and spatial encumbrances of more traditional community-engagement methods and may prove a useful starting point for public-engagement health research (infodemiology). Objective: The objective of our study was to describe user characteristics and health-related queries of the ChaCha question-and-answer platform, and discuss how these data may be used to better understand the perceptions, concerns, and stated needs of health care consumers and the public at large. Methods: We conducted a retrospective automated textual analysis of anonymous user-generated queries submitted to ChaCha between January 2009 and November 2012. A total of 2.004 billion queries were read, of which 3.50% (70,083,796/2,004,243,249) were missing 1 or more data fields, leaving 1.934 billion complete lines of data for these analyses. Results: Males and females submitted roughly equal numbers of health queries, but content differed by sex. Questions from females predominantly focused on pregnancy, menstruation, and vaginal health. Questions from males predominantly focused on body image, drug use, and sexuality. Adolescents aged 12–19 years submitted more queries than any other age group. Their queries were largely centered on sexual and reproductive health, and pregnancy in particular. Conclusions: The private nature of the ChaCha service provided a perfect environment for maximum frankness among users, especially among adolescents posing sensitive health questions. Adolescents’ sexual health queries reveal knowledge gaps with serious, lifelong consequences. The nature of questions to the service provides opportunities for rapid understanding of health concerns and may lead to development of more effective tailored interventions. [J Med Internet Res 2016;18(3):e44]Item The Impact of COVID-19 on HIV Self-Management, Affective Symptoms, and Stress in People Living with HIV in the United States(Springer, 2021-09) Wion, Rachel K.; Miller, Wendy R.; School of NursingCOVID-19 has the potential to detrimentally impact HIV self-management in people living with HIV (PLHIV). Effective HIV-self management is critically important in managing symptoms as well as viral suppression. We examined the impact of the COVID-19 pandemic on HIV self-management, social support, social isolation, depressive symptoms, anxiety, and stress in PLHIV. 85 PLHIV were recruited from social media sites and completed an online survey. Data were collected between April 23 and 30, 2020. Participants reported increases in social isolation, depressive symptoms, anxiety, and stress and decreases in social support and overall HIV self-management from pre- to during the pandemic. Additionally, the Social Support domain and Chronic Nature of HIV domain of the HIV Self-Management Scale were also decreased from pre- to during the pandemic. The ability for PLHIV to maintain HIV self-management during this time is essential and HIV care providers should have plans in place to provide support.Item Inflammatory Bowel Disease Self-Management: Exploring Adolescent Use of an Online Instagram Support Community(Wolters Kluwer, 2022) Malloy, Caeli; Rawl, Susan M.; Miller, Wendy R.; School of NursingThe purpose of this qualitative study was to explore the challenges adolescents with inflammatory bowel disease (IBD) experience with disease self-management as expressed in an online Instagram social support community. Public Instagram posts between January and December 2019 were manually collected from an online IBD support community. To focus on adolescent self-management needs, only posts from Instagram users who (1) indicated they had inflammatory bowel disease, (2) were 13-24 years old, or were in middle school, high school, or college were collected. Using thematic analysis, authors independently coded and identified emerging themes about self-management. Of 2,700 Instagram posts assessed for eligibility, 83 posts met inclusion criteria. Six major themes about inflammatory bowel disease self-management emerged: Desire for Normalcy, Dietary Changes, Education and Career, Healthcare System, Relationships With Others, and Symptoms and Complications. As the first thematic analysis of Instagram posts in an online inflammatory bowel disease community, results provide a crucial perspective of the concerns of adolescents with inflammatory bowel disease. Self-management challenges were wide-ranging and complex, underscoring the importance of IBD self-management in the adolescent population. Nurses should take a holistic approach to assess self-management challenges and tailor care to the specific needs of adolescents living with inflammatory bowel disease.