Wendy Miller
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Utilizing Innovative Methods to inform Patient-Centered Interventions in People with Epilepsy
All chronic diseases, including epilepsy, require self-management on the part of the patient. Self-management in epilepsy is particularly complex, and influences important outcomes such as social functioning and quality of life. Dr. Wendy Miller’s research focuses on finding new ways to improve the daily self-management and quality of life for people living with epilepsy. For example, Dr. Miller created the Life Changes in Epilepsy Scale that is being used locally, nationally, and internationally by healthcare providers to determine areas in the lives of their patients that need intervention. Also, through her collaboration with other researchers, the American Epilepsy Society updated its guidelines for discussing Sudden Unexpected Death in Epilepsy (SUDEP) with patients with epilepsy and/or their parents/caregivers. Prior to this achievement, accurate information about SUDEP, which is a leading cause of death for people with epilepsy, was not discussed with them.
More recently, Dr. Miller worked with other researchers to capture patient concerns using Big Data machine learning methods. This technology provided a plethora of data that was used to find quality of life issues that had not previously been addressed. Consequently, Dr. Miller created myAURA, a web-based intervention that uses machine learning and artificial intelligence to provide users with individualized, theory-based self-management enhancing content that does not require a human interventionist. This platform has been used during the COVID-19 pandemic to help patients self-manage their epilepsy and to also inform researchers about the ways in which the pandemic has affected self-management of chronic diseases.
Dr. Miller’s work to generate new knowledge and create better interventions for people with epilepsy is another great example of how IUPUI’s faculty members are TRANSLATING their RESEARCH INTO PRACTICE.
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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 Epilepsy Self-Management in Older Adults: A Qualitative Study(2012-03-19) Miller, Wendy Renee; Buelow, Janice; Bakas, Tamilyn; Habermann, Barbara; Unverzagt, FrederickEpilepsy is the most common chronic neurological condition in the United States, and it is incurable. Those who suffer from it must engage in both collaborative and independent management of their condition for the remainder of their lives. The treatment and care of those with epilepsy must therefore include not only medical interventions, which alone cannot cure the disorder or prevent the disability associated with it, but must also prepare persons for and facilitate their independent management—self-management—of the disorder. Self-management is a process that affects important outcomes including resource utilization, mortality, and quality of life. In the United States, those age 60 years and older have the highest incidence of new-onset epilepsy. Despite the high incidence of epilepsy in this population, coupled with the knowledge that self-management affects important outcomes, a thorough search of the literature suggests that self-management experiences of older adults diagnosed with epilepsy late in life have not been investigated. The purpose of the study was to examine, using a qualitative descriptive design, the self-management experiences of older adults diagnosed with epilepsy at or after age 60. Semi-structured interviews were used to generate data. A total of 20 older adults participated. Major findings indicate that older adults in the sample, and particularly the women, experienced a delay in receiving an epilepsy diagnosis. These older adults experienced multiple problems and life changes since diagnosis—some of which are unique to this population and many of which are amenable to intervention. These older adults devise and execute a variety of management strategies, within a system, that are classified as disease/treatment-focused and problem/life changes-focused. These strategies further are categorized as proactive or reactive, with proactive strategies being pre-planned and effective, and reactive strategies being unplanned and less effective. Knowledge generated from this study reveals the problems experienced by older adults with epilepsy, as well as their management needs. These findings will inform future studies, the aim of which will be to investigate more thoroughly these problems and needs and, ultimately, to inform interventions aimed at resolving this population’s problems and concerns while also improving outcomes.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 Goal Development in Parents of Children with Epilepsy and Learning Disorders(Office of the Vice Chancellor for Research, 2014-04-11) Keener, Lindsey; Miller, Wendy; Buelow, Janice M.Epilepsy is the most common, chronic neurological condition in children, impacting 2.4 children per 1,000. Caregivers of children with epilepsy and learning disorders are affected by many confounding factors including complex drug regimens, navigating a complex healthcare system, the uncertainty of their child’s future and the challenge of creating an effective educational program in conjunction with their child’s school. Parents of children with epilepsy and learning disorders participated in the Creating Avenues for Parent Partnerships (CAPP) program. The original study was an experimental design in which parents were randomly placed in an intervention group or a wait list control group. Each group consisted of 25 parents, with a total of 50 parents participating in the pilot test of CAPP. One of the instruments that the parents completed throughout the duration of this interventional program was the Goal Attainment Scale (GAS). In the GAS, parents described their goals related to their child’s condition and care. Using a qualitative and systematic coding system the parent’s goals were categorized based on content and outcomes related to their child. The goals created by parents in this population subset fell into eight distinct categories. The categories discerned during analysis were future oriented, internal/perspective adjustment, interpersonal, maintaining normalcy, education/coordination with schools, interaction with health care professionals, physical fitness, and acknowledgement/fostering independence.. Based on analysis of the goals that parents created within the GAS, parents of children with epilepsy are particularly concerned with the security of their child’s future (both residentially and vocationally), educational advancement in partnership with schools, and improving health status through interaction with health care professionals. For the nurse interacting with patients and their caregiver in this specialized population it is critical to understand the goals that caregivers create in relation to the problems that they perceive as the most significant in their lives. Then the nurse will be able to enable caregivers to meet their goals and improve the health outcomes and overall quality of life in children with epilepsy and learning disorders.Item HIV pre‐exposure prophylaxis uptake by advanced practice nurses: Interplay of agency, community and attitudinal factors(Wiley, 2019-11) Jayawardene, Wasantha; Carter, Gregory; Agley, Jon; Meyerson, Beth; Garcia, Justin R.; Miller, Wendy; School of NursingAims To identify associations among agency, community, personal and attitudinal factors that affect advanced practice nurses’ uptake of HIV pre‐exposure prophylaxis, an intervention consists of emtricitabine/tenofovir once‐daily pill, along with sexual risk reduction education. Design Cross‐sectional. Methods During March‐May 2017, randomly selected Indiana advanced practice nurses were invited to complete an online survey, consisted of several validated self‐rating measures (N = 1,358; response = 32.3%). Final sample (N = 369) was predominantly White, non‐Hispanic, female advanced practice nurses in urban practices (mean age = 46). Conceptual model for structural equation model included 29 original/composite variables and five latent factors. Results Final model consisted of 11 variables and four factors: agency, community, HIV prevention practices (including screening) and motivation to adopt evidence‐based practices overall. Community had direct effects on HIV prevention practices (estimate = 0.28) and agency (estimate = 0.29). Agency had direct effects on HIV prevention practices (estimate = 0.74) and motivation to adopt evidence‐based practices (estimate = 0.24). Community had indirect effects, through agency, on the two remaining factors. Conclusion Barriers exist against pre‐exposure prophylaxis implementation, although practice guidelines are available. HIV prevention practices must be integrated across organizational structures, especially in high‐risk communities, whereas practice change is more effective when focused on changing providers’ attitudes towards intervention. When planning a pre‐exposure prophylaxis intervention, advancing inputs from healthcare professionals, organizational leadership and community members, is crucial to success. Impact In settings where advanced practice nurses are primary contact points for health care, they may be best positioned to have an impact on implementation of HIV risk reduction strategies. Further research is needed to optimize their contributions to pre‐exposure prophylaxis implementation.Item Hybrid Concept Analysis of Self-Management Support: School Nurses Supporting Students with Psychogenic Nonepileptic Seizures(SAGE, 2021) Tanner, Andrea; von Gaudecker, Jane; Buelow, Janice; Miller, WendySelf-management support has been identified as an effective nursing intervention for improving outcomes for people with chronic conditions, yet this concept lacks a clear definition. Furthermore, the concept has not been used in school nursing literature despite the clear connection between school nursing practice and tenets of self-management support. Additionally, the concept has not been explored in the context of difficult-to-manage mental health concerns, such as psychogenic nonepileptic seizures. A conversion disorder in which seizure events in the absence of abnormal brainwave activity result from stress, psychogenic nonepileptic seizures affect the quality of life and school experience for students experiencing them and could be addressed through self-management support. This hybrid concept analysis included a review of extant literature and semi-structured interviews with school nurses to ascertain a definition of self-management support in the context of school nursing using care of students with psychogenic nonepileptic seizures as an exemplar.