Goal Development in Parents of Children with Epilepsy and Learning Disorders

poster abstractEpilepsy 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

Epilepsy self-management during a pandemic: Experiences of people with epilepsy

This article is made available for unrestricted research re-use and secondary analysis in any form or be any means with acknowledgement of the original source. These permissions are granted for the duration of the World Health Organization (WHO) declaration of COVID-19 as a global pandemic.The 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

Chronic Disease Self-Management: A Hybrid Concept Analysis

BACKGROUND: 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

Living in the epilepsy treatment gap in rural South India: A focused ethnography of women and problems associated with stigma

In India, women with epilepsy face unique challenges. A focused ethnography of six women within the epilepsy treatment gap was conducted in rural South India. Women were asked to describe their day-to-day lives. Data were collected through open-ended, semistructured interview questions, participant observation, and field notes. Thematic analysis was done. The disease-related stigma contributed to the women's physical, psychological, and emotional struggles; the women and their family members made every effort to conceal the disease. Educational interventions to create awareness could help women seek effective treatments for their seizures, thereby reducing the stigma and improving the quality of their lives

Predictors of Health-related Quality of Life at One Month after Head and Neck Cancer Surgery

poster abstractSignificance: 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

Women’s Experiences with Epilepsy Treatment in Southern India: A Focused Ethnography

Women with epilepsy in rural southern India often do not receive anti-epilepsy drugs (AEDs) or take these drugs regularly, but little is known about how they experience the epilepsy treatment they do receive. The purpose of this study was to provide an in-depth description of the treatment experiences of women in this region who had been diagnosed with epilepsy but who do not consistently take AEDs. Focused ethnography was conducted using participant observation and in-depth interviews with six women with epilepsy, eight of their family members, and two traditional healers. The women's treatment experiences are best described as living at the intersection of Western allopathic ("English") medicine and traditional healing practices-approaches that could be complementary or conflicting. The women revealed a variety of perceived barriers to the use of "English" medicine. Health care professionals should appreciate the dynamic interplay of the two treatment approaches and consider all cultural, social, and economic factors that influence the women's treatment experiences

Women’s Experiences with Epilepsy Treatment in Southern India: A Focused Ethnography

Women with epilepsy in rural southern India often do not receive anti-epilepsy drugs (AEDs) or take these drugs regularly, but little is known about how they experience the epilepsy treatment they do receive. The purpose of this study was to provide an in-depth description of the treatment experiences of women in this region who had been diagnosed with epilepsy but who do not consistently take AEDs. Focused ethnography was conducted using participant observation and in-depth interviews with six women with epilepsy, eight of their family members, and two traditional healers. The women’s treatment experiences are best described as living at the intersection of Western allopathic (“English”) medicine and traditional healing practices—approaches that could be complementary or conflicting. The women revealed a variety of perceived barriers to the use of “English” medicine. Health care professionals should appreciate the dynamic interplay of the two treatment approaches and consider all cultural, social, and economic factors that influence the women’s treatment experiences

An Integrative Review of School-Based Mental Health Interventions and Implications for Psychogenic Nonepileptic Seizures

Millions of students with mental health concerns attend school each day. It is unknown how many of those students experience psychogenic nonepileptic seizures (PNES); however, quality of life, academic, and mental health outcomes for students experiencing PNES can be bleak. Currently, no authors have addressed potential school nurse interventions for students with PNES. Because PNES is a mental health condition and is often influenced by underlying anxiety and/or depression, an integrative review of school nurse interventions and outcomes for students with general mental health concerns was conducted. An integrative review resulted in the identification of 13 quantitative and 2 qualitative studies that met inclusion criteria. The findings from this review suggest school nurses, following principles from the Framework for 21st Century School Nursing Practice, play an active role in mental health interventions and should be involved in replicating and testing known mental health interventions to investigate their effectiveness for students with PNES

Preliminary Efficacy of a Stroke Caregiver Intervention Program for Reducing Depressive Symptoms

poster abstractBackground and Purpose: Stroke caregivers who lack skills because of unmet needs are at increased risk for depressive symptoms; which can impede rehabilitation of the survivor and increase the survivor’s risk for costly, long-term institutionalization. The Telephone Assessment and Skill-Building Kit (TASK) is an 8-week follow-up program based on individualized assessment of caregiver needs. The purpose of this study was to explore preliminary efficacy of the TASK program for improving stroke caregiver depressive symptoms. Methods: A subgroup of 15 caregivers who screened positive for mild to severe depressive symptoms at baseline (PHQ-9 > 5) were randomized to the TASK program (n=8) or an attention control group (n=7). Data were analyzed using Univariate ANCOVA, controlling for baseline scores and number of minutes spent with the nurse for each timepoint (4, 8, and 12 weeks after baseline). Partial ƞ2 was used to estimate effect sizes (.25 large). Results: Although not statistically significant because of the small sample size, medium to large improvements based on effect sizes were found in depressive symptoms for the TASK group relative to the control group at 4 weeks [F(1,11) = 4.15, p=.07, ƞ2=.27], 8 weeks [F(1,11) = 1.66, p=.22, ƞ2=.13], and 12 weeks after baseline [F(1,11) = 1.47, p=.25, ƞ2 =.12]. Adjusted PHQ-9 means for the TASK group at 4, 8, and 12 weeks ranged from 4.9 to 5.9; adjusted PHQ-9 means for the control group at 4, 8, and 12 weeks ranged from 9.0 to 10.8. Conclusions: Caregivers in the TASK group reduced their depressive symptoms to the mild range, while caregivers in the control group maintained their scores primarily in the moderately depressed range. Further testing of the TASK program in a larger randomized controlled clinical trial is warranted and is currently underway