Browsing by Author "Buelow, Janice"
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Item Burden of Seizure Clusters on Patients With Epilepsy and Caregivers: Survey of Patient, Caregiver, and Clinician Perspectives(Lippincott, Williams & Wilkins, 2017-11) Penovich, Patricia E.; Buelow, Janice; Steinberg, Kathy; Sirven, Joseph; Wheless, James; School of NursingObjectives: To characterize the burden of seizure clusters (SC) on patients and caregivers, a large internet-based survey was conducted. Methods: The Seizure Cluster Burden of Illness US Survey was conducted online by Harris Poll on behalf of The Epilepsy Foundation in September 2014. Respondents included adult patients 18 years and above with epilepsy or a seizure disorder who had experienced SC in the past year (defined as ≥2 seizures within 24 h outside the patient’s typical seizure pattern), caregivers providing current care for a patient with SC (adult or child), and clinicians (neurologists, epileptologists) who treat adult or pediatric patients. Responses to a wide range of topics, including emotional well-being, daily function, productivity, and approach to clinical practice, were collected. Results: There were 861 respondents (259 adult SC patients, 263 caregivers, and 339 clinicians). A majority of all respondent groups felt SC have a moderate/major negative impact on patient and caregiver quality of life, including emotional, financial, and social components. Responses indicated possible overutilization of emergency room services and underutilization of rescue treatment. Only 30% of patients reported having a seizure emergency plan. Some responses showed discrepancies between clinicians and patients/caregivers in the perceived degree of negative impact of SC and management practices for SC. Conclusions: These results suggest the need for increased education on managing SC. Clinicians need to develop seizure emergency plans and discuss rescue therapies, whereas patients and caregivers need to ask for and utilize these management strategies.Item Development and collaborations of a nursing workgroup within a bilateral global medical consortium(Sigma, 2020) Reid, Davika D.; von Gaudecker, Jane R.; Sila, Faith M.; Zuniga, Julie A.; Haskett, Lindsay A.; Tarus, Titus K.; Kyololo, O'Brian; Chelagat, Dinah J.; Abbyad, Christine W.; Garcia, Alexandra A.; Buelow, JaniceWe describe the formation of a bilateral nursing workgroup within a global medical consortium of North American and Kenyan healthcare providers and detail our collaboration to advance nursing care, education, and research to improve patient outcomes across a variety of specialties in acute care and community settings in both countries.Item Development of the theory of shared communication : the process of communication between parents of hospitalized technology dependent children and their nurses(2014) Giambra, Barbara Klug; Broome, Marion; Buelow, Janice; Stiffler, Deborah; Sabourin, Teresa ChandlerTechnology dependent children such as those who require a feeding tube, tracheotomy or ventilator are a special group of chronically ill children who require complex care on a daily basis. When these children are hospitalized, the accompanying parent and the nurse caring for the child on the inpatient unit must communicate together about the care of the child. Care for the technology dependent child is optimized when parents and nurses both understand the plan of care for the child. To discover the process of parent-nurse communication that results in mutual understanding of the child’s plan of care, a grounded theory study to explore the perspectives of the parents of previously hospitalized technology dependent children was undertaken. The Theory of Shared Communication emerged from the data and illuminates the parent-nurse communication process. The antecedents of the process are respect for own and others expertise. The communication process consists of six communication behaviors; ask, listen, explain, advocate, verify understanding and negotiate roles. The behaviors are nested within each other and all are not necessarily required for the non-linear process to result in the relational outcome of mutual understanding of the child’s plan of care. An integrative review of the literature regarding the process of communication between parents of hospitalized chronically ill children and their nurses shed light on the components of the process, but no study was found that explicated the entire communication process. A subsequent grounded theory study added the perspectives of the nurses to the original theory. No new components of the process were uncovered, but the nurse’s narratives added significantly to our understanding of the communication process. Additionally, parents of currently hospitalized technology dependent children confirmed the propositions of the Theory of Shared Communication.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 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 "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 Needs and Concerns of Combat Veterans with Mild Traumatic Brain Injury and the Development of the Veterans Compensate, Adapt and Reintegrate Intervention(2010-08-31T18:33:50Z) Daggett, Virginia Sue; Bakas, Tamilyn; Buelow, Janice; Habermann, Barbara; Murray, Laura L.Traumatic brain injury (TBI) has emerged as a major cause of morbidity among U.S. soldiers who have served in Iraq and Afghanistan. Even mild TBI (mTBI) can result in cognitive impairments that can impact how veterans experience such things as physical symptoms, emotions and behaviors, instrumental activities of daily living, interpersonal interactions, and community reintegration. The purpose of this study was to develop a comprehensive self-management intervention for veterans with mTBI to facilitate their community reintegration upon returning from deployment to combat zones. This study was conducted in two Phases. Phase I entailed collecting qualitative data regarding needs, concerns, strategies used, and advice given by eight veterans with mTBI, guided by a conceptual model derived from Ferrans’ and colleagues’ health-related quality of life model and the TBI literature. Six key categories and predominant themes emerged providing further support for the model (cognitive impairments, physical symptoms, emotions and behaviors, instrumental activities of daily living, interpersonal interactions, and community reintegration). Guided by the conceptual model, a mTBI Veteran Needs and Concerns Checklist and 14 algorithms making up the VETeranS Compensate, Adapt, REintegrate (VETSCARE) intervention were developed. Phase II entailed obtaining review of the mTBI Veteran Needs and Concerns Checklist and the 14 VETSCARE algorithms from six TBI experts. On a scale of 1 to 5, with 5 being strongly agree, expert ratings provided moderate evidence of content validity for the checklist (3.33), and for the 14 algorithms (problem relevance 3.92, accuracy 3.73, feasibility 3.80, acceptability 3.84). The average overall expert rating for the VETSCARE intervention was 3.82. The checklist and the 14 algorithms are being revised based on specific comments provided by the experts. Once revised, the mTBI Veteran Needs and Concerns Checklist and the VETSCARE intervention will be tested for feasibility in a future pilot study with veterans with mTBI who have recently returned from combat zones in Iraq and Afghanistan.Item Pattern and frequency of neurological and neurosurgical care of adult inpatients and outpatients at a tertiary referral hospital in Kenya(Elsevier, 2020-12) von Gaudecker, Jane; Oduor, Chrispine; Ofner, Susan; Oyungu, Eren; Said, Jamil; Buelow, JaniceObjective: To describe the patterns and burden of neurological and neurosurgical disorders at a national tertiary level referral hospital in western Kenya. Methods: We conducted a three-month period prevalence study. We recruited consecutive adult patients seeking neurological-neurosurgical care in both inpatient and outpatient settings at Moi Teaching and Referral Hospital. Results: 833 participants were included. The age range was between 19 year and 99 years (mean age = 45.3 years). The most common diagnoses among neurology inpatients were meningitis (12%), ischemic stroke (11.0%) and epilepsy/seizure (6.7%). Among neurology outpatients, epilepsy (35.1%) and ischemic stroke (18.8%) were the most common diagnoses. The most common neurosurgery inpatient diagnosis was hemorrhagic stroke (16.3%) and among outpatients, the most common diagnoses were traumatic brain injury (17.4%) and hemorrhagic stroke (16.3%). Overall, 471 (56.5%) patients underwent HIV testing, of which, 89 (18.9%) were HIV positive and 382 (81.1%) were HIV negative. Thirty-one inpatient deaths (male 58%), attributable to neurological and neurosurgical disorders, occurred during the study period. Meningitis was the most common cause of death. Conclusions: The findings suggest that meningitis, stroke, epilepsy, and traumatic brain injury were the most common diagnosis. More resources and efforts should be directed towards prevention, diagnosis and management of these conditions in the region.Item Predictors of Health-related Quality of Life at One Month after Head and Neck Cancer Surgery(Office of the Vice Chancellor for Research, 2011-04-08) Wang, Hsiao-Lan; Mikesky, Alan; Keck, Juanita F.; Bunnell, Karen; Buelow, Janice; Rawl, Susan M.Significance: Head and neck cancer (HNC) survivors frequently experience treatment-related complications that may cause decrements in health-related quality of life (HRQOL). Before interventions can be designed to enhance HRQOL in the early postoperative period, descriptive research is needed to determine predictors of HRQOL in this understudied population. Problem and Purpose: The proposed study identified predictors of global HRQOL, and physical, functional, emotional, and social well-being at one month after HNC surgery. Variables examined as potential predictors included shoulder pain, shoulder function, and functional impairments (disfigurement, and eating, speech, and breathing impairments). Theoretical Framework: The University of California, San Francisco School of Nursing Symptom Management Model was modified and used to guide the study. Methods and Analysis: In this exploratory, cross-sectional study, we examined a convenience sample of 29 patients who had undergone HNC surgery with curative intent one month previously. Global HRQOL was measured using the Functional Assessment of Chronic Illness Therapy (FACIT) General Scale, including four well-being subscales. Shoulder pain intensity was measured using the Brief Pain Inventory, shoulder pain distress was measured using a 0-10 numerical rating scale, and functional impairment was measured using the FACIT Head and Neck Subscale. Shoulder function was assessed using a goniometer. Pearson correlations were initially applied to determine correlates (p <0.20) that should be entered in subsequent stepwise regression models. Findings and Implications: The only significant predictor of global HRQOL was eating impairment (B = -0.20, p = 0.02). Predictors of physical well-being were shoulder pain distress (B = -0.10, p = 0.02) and eating impairment (B = 0.27, p = 0.03). Predictors of functional well-being were speech impairment (B = -0.43, p < 0.01) and disfigurement (B = - 0.20, p = 0.02). No significant predictors were found for emotional and social well-being. The findings suggested that patients’ physical and functional well-being can be influenced by eating impairment, shoulder pain distress, speech impairment, or disfigurement at one month after HNC surgery. Nurses need to monitor nutrition intake, provide proper pain management, and collaborate with speech and physical therapists to promote early rehabilitation. A longitudinal study with a larger sample size is warranted to describe needs for multidisciplinary care to improve HQOL after HNC surgery.Item Psychometric Testing of the Life Changes in Epilepsy Scale(Springer, 2017) Miller, Wendy Renee; Weaver, Michael; Bakoyannis, Giorgos; Bakas, Tamilyn; Buelow, Janice; Sabau, Dragos; School of NursingPurpose: Three aims were addressed: (a) Evaluate properties of the items comprising the Life Changes in Epilepsy Scale-Pilot (LCES-P), (b) use item analysis to optimize the scale, (c) evaluate construct and criterion-related validity of the optimized LCES. Methods: The LCES-P was administered to 174 adults with epilepsy. Item analysis and exploratory factor analysis were performed. Internal consistency reliability, construct validity, and criterion-related validity were evaluated. Results: 17 items were retained in the optimized LCES. Internal consistency reliability was supported. Path analysis was used to evaluate construct validity. Criterion-related validity was supported by correlations with the Medical Outcomes SF-36 Survey (SF-36) General Health subscale and a criterion variable. Conclusions: The optimized version of the LCES can serve as a valuable outcome measure in clinical and research environments.