Browsing by Author "Miller, Wendy"
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Item Activities and support provided by family caregivers of persons with type 2 diabetes(2016-03-11) Scarton, Lisa J.; Bakas, Tamilyn; Miller, Wendy; McLennon, Susan M.; Huber, LesaType 2 diabetes, a chronic condition affecting millions, continues to rise in epidemic proportions. Type 2 diabetes, managed through lifestyle changes, affects the entire family. Family caregivers provide vital support to these individuals; however, little research has been conducted surrounding the perceived difficulty or ease of caregiver activity and supportive behaviors. The purpose of this dissertation was to develop and psychometrically test a scale that measures this difficulty or ease of activities and behaviors. This was accomplished through the compilation of three distinct manuscripts. First, an integrative review was conducted to identify what is known regarding needs and concerns of family caregivers of persons with type 2 diabetes; findings revealed a need for more research. Then, based on these recommendations, a qualitative study was conducted that explored the needs and concerns identified by 33 American Indian, African American, and White family caregivers. All these caregivers had similar concerns related to needing general diabetes information, providing support to the family member, and taking care of their own health. Study themes were used to develop items for a new instrument, the Diabetes Caregiver Activity and Support Scale (D-CASS) that was psychometrically tested with 101 American Indian, African American, and White family caregivers of persons with type 2 diabetes. This study used a cross-sectional, descriptive-correlational design and provided evidence of internal consistency reliability (α = .82) and two-week test-retest reliability (intraclass correlation coefficient = .70) for the D-CASS. Criterion-related validity was established using a single-item criterion measuring overall how easy or difficult it was for caregivers to provide care for their loved ones (r = .65, p < .01). Unidimensionality was supported by factor analysis, with loadings ranging from .45 to .70, with 32% of the variance explained by the first factor (eigenvalue = 4.02). Model testing through a series of three hierarchical multiple regressions guided by a conceptual model provided further evidence of construct validity for the D-CASS. This dissertation provided better understanding of needs and concerns of family caregivers of persons with type 2 diabetes and led to the development of a psychometrically sound diabetes-specific instrument for future research.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.Item Introduction to Wendy Miller & Her Work(Center for Translating Research Into Practice, IU Indianapolis, 2021-03-08) Miller, WendyLearn more about Dr. Miller's research. "Utilizing Innovative Methods to inform Patient-Centered Interventions in People with Epilepsy"Item "It's Hard!": Adolescents' School Experience and Self-Management of Psychogenic Nonepileptic Seizures(2021-06) Tanner, Andrea Lynn; Miller, Wendy; Buelow, Janice; von Gaudecker, Jane; Decker, Janet R.Adolescents with a type of conversion disorder called psychogenic nonepileptic seizures (PNES) experience many school, relationship, and health care struggles as they attempt to manage their mental health condition with PNES events that strikingly resemble epileptic seizures. Considered one of the top three neuropsychiatric problems, health care providers and school personnel remain ill-informed regarding how to care for adolescents with PNES. Because of the unique multidisciplinary approach needed to address adolescent PNES, school nurses are uniquely positioned to bridge health care and education systems. A review of literature examined the concept of school nurse selfmanagement support for PNES, existing school nurse-led mental health interventions, and the relationships between concepts for a conceptual framework guiding adolescent PNES research. This review of literature reveals an absence of adolescents’ perspective and school emphasis in PNES research. This study was designed to investigate adolescents’ experience attending school and self-managing PNES. This was accomplished through a qualitative content analysis of data generated from semi-structured interviews and magnitude coding of select quantifiable data. Data were obtained from 10 adolescents, 12 to 19 years of age, with current or recent in-person school attendance. The results indicate adolescents from the sample had school experiences that involved stress, bullying, accusations of faking seizures, and feelings of isolation or exclusion. Their mostly effective proactive selfmanagement activities included seeking protection, persevering in life despite PNES struggles, and progress monitoring through seizure tracking. Reactive activities of mixed effectiveness included coping responses to seizure warnings. School nurses, school personnel, family members, and peers served as both facilitators and barriers for PNES self-management. Adolescents also contributed information for three emerging themes— family-management, school-management, and illness representation. These findings reveal the difficulties of attending school and self-managing PNES and inform future PNES interventions to improve academic, mental health, and quality of life outcomes.Item Just In Time: Challenges and Opportunities of First Aid Care Information Sharing for Supporting Epileptic Seizure Response(Association for Computing Machinery, 2021) Min, Aehong; Miller, Wendy; Rocha, Luis M.; Börner, Katy; Brattig Correia, Rion; Shih, Patrick C.; School of NursingThere are over three million people living with epilepsy in the U.S. People with epilepsy experience multiple daily challenges such as seizures, social isolation, social stigma, experience of physical and emotional symptoms, medication side effects, cognitive and memory deficits, care coordination difficulties, and risks of sudden unexpected death. In this work, we report findings collected from 3 focus groups of 11 people with epilepsy and caregivers and 10 follow-up questionnaires. We found that these participants feel that most people do not know how to deal with seizures. To improve others’ abilities to respond safely and appropriately to someone having seizures, people with epilepsy and caregivers would like to share and educate the public about their epilepsy conditions, reduce common misconceptions about seizures and prevent associated stigma, and get first aid help from the public when needed. Considering social stigma, we propose design implications of future technologies for effective delivery of appropriate first aid care information to bystanders around individuals with epilepsy when they experience a seizure.Item Menopause and Big Data: Word Adjacency Graph Modeling of Menopause-Related ChaCha® Data(Wolters Kluwer, 2017-07) Carpenter, Janet S.; Groves, Doyle; Chen, Chen X.; Otte, Julie L.; Miller, Wendy; School of NursingOBJECTIVE: To detect and visualize salient queries about menopause using Big Data from ChaCha. METHODS: We used Word Adjacency Graph (WAG) modeling to detect clusters and visualize the range of menopause-related topics and their mutual proximity. The subset of relevant queries was fully modeled. We split each query into token words (ie, meaningful words and phrases) and removed stopwords (ie, not meaningful functional words). The remaining words were considered in sequence to build summary tables of words and two and three-word phrases. Phrases occurring at least 10 times were used to build a network graph model that was iteratively refined by observing and removing clusters of unrelated content. RESULTS: We identified two menopause-related subsets of queries by searching for questions containing menopause and menopause-related terms (eg, climacteric, hot flashes, night sweats, hormone replacement). The first contained 263,363 queries from individuals aged 13 and older and the second contained 5,892 queries from women aged 40 to 62 years. In the first set, we identified 12 topic clusters: 6 relevant to menopause and 6 less relevant. In the second set, we identified 15 topic clusters: 11 relevant to menopause and 4 less relevant. Queries about hormones were pervasive within both WAG models. Many of the queries reflected low literacy levels and/or feelings of embarrassment. CONCLUSIONS: We modeled menopause-related queries posed by ChaCha users between 2009 and 2012. ChaCha data may be used on its own or in combination with other Big Data sources to identify patient-driven educational needs and create patient-centered interventions.Item Oncology Nurses’ Experiences with Prognosis Related Communication(Office of the Vice Chancellor for Research, 2013-04-05) McLennon, Susan M.; Lasiter, Sue; Miller, Wendy; Amlin, Kathryn; Chamness, Amy R.; Helft, Paul R.Background: Oncology nurses have opportunities to engage in prognosis related communication with advanced cancer patients but often encounter barriers that impede patient prognosis understanding. Deficits in prognosis understanding have been associated with delays in transitions to end of life care, overly aggressive and potentially non-beneficial cancer treatments, and poor quality of life. Purpose: The purpose of this study was to describe nurses' experiences with prognosis related communication with advanced cancer patients. Methods: A framework of realism was used in this qualitative, descriptive design. A thematic analysis of audio-recorded interviews with oncology nurses (n=27) recruited from a Midwestern urban academic health center and 3 affiliated institutions was performed. Interviews were transcribed verbatim and accuracy checked. Data were coded by 3 experienced researchers. After coding, themes were identified, and a thematic map was developed. Methods to ensure trustworthiness of the findings were used. Results: Six themes were identified: Being in the middle, assessing the situation, barriers to prognosis communication, nurse actions, benefits of prognosis understanding, and negative outcomes. Nurses managed barriers through facilitation, collaboration, or independent actions to assist patients and/or families with prognosis understanding. Conclusions: Shortcomings in prognosis related communication with advanced cancer patients may contribute to negative outcomes for patients and nurses. Interventions to advance nurses’ abilities to facilitate and engage in prognosis communications are needed. Inter-professional communication skills education may also be beneficial.Item Social determinants of health associated with epilepsy treatment adherence in the United States: A scoping review(Elsevier, 2021-11) von Gaudecker, Jane; Buelow, Janice; Miller, Wendy; Tanner, Andrea; Austin, JoanPurpose: The aim of this paper is to share the results of a scoping review in which we examined the Social Determinants of Health (SDoH) that are associated with anti-seizure medication (ASM) treatment adherence among people living with epilepsy in the United States. Methods: Our review was informed by the methods of Arksey and O’Malley (2005) for a scoping review. A total of in 3,826 articles were identified for reference through a literature search, of which 17 publications were deemed relevant to our scoping review. The final articles were mapped using the Epilepsy SDoH Conceptual Framework to identify gaps. Findings: Our review suggests that there are multidimensional associations of SDoH in ASM adherence. The SDoH were interrelated. Race/ethnicity and socioeconomic status appeared to have major associations with ASM adherence. Several gaps in the literature were identified, including inadequately exploring the effect that each SDoH has on treatment adherence, and the methods used for assessment. Conclusions: Future longitudinal research to address the identified gaps would foster interventions that promote ASM adherence among vulnerable populations living with epilepsy.