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1.
Biomed Res Int ; 2021: 6692974, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34697589

RESUMO

Alzheimer's disease (AD) and epilepsy are neurological disorders that affect a large cohort of people worldwide. Although both of the two diseases could be influenced by genetic factors, the shared genetic mechanism underlying the pathogenesis of them is still unclear. In this study, we aimed to identify the shared genetic networks and corresponding hub genes for AD and epilepsy. Firstly, the gene coexpression modules (GCMs) were constructed by weighted gene coexpression network analysis (WGCNA), and 16 GCMs were identified. Through further integration of GCMs, genome-wide association studies (GWASs), and expression quantitative trait loci (eQTLs), 4 shared GCMs of AD and epilepsy were identified. Functional enrichment analysis was performed to analyze the shared biological processes of these GCMs and explore the functional overlaps between these two diseases. The results showed that the genes in shared GCMs were significantly enriched in nervous system-related pathways, such as Alzheimer's disease and neuroactive ligand-receptor interaction pathways. Furthermore, the hub genes of AD- and epilepsy-associated GCMs were captured by weighted key driver analysis (wKDA), including TRPC1, C2ORF40, NR3C1, KIAA0368, MMT00043109, STEAP1, MSX1, KL, and CLIC6. The shared GCMs and hub genes might provide novel therapeutic targets for AD and epilepsy.


Assuntos
Doença de Alzheimer/genética , Epilepsia/genética , Doença de Alzheimer/patologia , Biologia Computacional/métodos , Bases de Dados Genéticas , Epilepsia/enfermagem , Epilepsia/patologia , Perfilação da Expressão Gênica , Redes Reguladoras de Genes , Predisposição Genética para Doença , Estudo de Associação Genômica Ampla , Humanos , Mapas de Interação de Proteínas , Locos de Características Quantitativas
4.
Pediatr Neurol ; 112: 56-63, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32916425

RESUMO

BACKGROUND: Quality measures have highlighted the need for efficient treatment of status epilepticus. One strategy is prevention of refractory status epilepticus through individualized seizure action plans. As a quality improvement project, we implemented a standardized seizure action plan to improve the delivery of key information to families of children with seizures. METHODS: We implemented our standardized seizure action plan using plan-do-study-act cycles. The plans were distributed to caregivers of children (zero to 18 years) seen for seizures in outpatient neurology clinics. Families were given questionnaires at the beginning of each visit to gauge their understanding of their child's diagnosis, treatment, and comfort in emergency seizure management. Provider utilization rates and questionnaire responses were analyzed over time to assess the effectiveness of the action plan. RESULTS: Provider utilization rates of the standardized seizure action plan improved from 0% to 58.1%. At baseline, 31.5% caregivers indicated that they did not know their child's epilepsy syndrome or seizure type, 29.6% did not know the emergency protocol at their child's school, 9.2% did not know when to consider a seizure an emergency or what to do if their child's seizure had become an emergency, and 17.5% were not comfortable administering rescue medication. Caregivers who received the action plan had improved responses at subsequent visits (P < 0.001), whereas those who did not receive the standardized form did not improve. CONCLUSIONS: Standardizing provision of seizure action plans in pediatric neurology clinic can improve key elements of caregiver education regarding epilepsy diagnoses and seizure emergencies.


Assuntos
Educação não Profissionalizante , Epilepsia/terapia , Educação em Saúde , Conhecimentos, Atitudes e Prática em Saúde , Pais , Relações Profissional-Família , Melhoria de Qualidade , Estado Epiléptico/prevenção & controle , Adolescente , Adulto , Criança , Pré-Escolar , Emergências , Epilepsia/enfermagem , Feminino , Hospitais Pediátricos , Humanos , Lactente , Masculino , Neurologia , Pediatria
5.
J Neurosci Nurs ; 52(2): 84-90, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-32084041

RESUMO

INTRODUCTION: Epilepsy is a common chronic disease with transient brain dysfunction and critically influences the quality of patients' family life. The aim of this study was to analyze the effectiveness of family management style on family quality of life in children. METHODS: We randomized 130 children to either the intervention group (n = 65) or the control group (n = 65). Family management style combined with routine care was applied in the intervention group within the first 24 hours after admission, whereas only routine care was applied in the control group. Family management style contains 3 steps: involve families into the intervention group and determine treatment plan, educate parents on how to manage their family, and monitor quality of home management. Scores on the Beach Center Family Quality of Life Scale (FQOL) of 2 groups were collected at 3 time points: within the first 24 hours after admission (T1), 6 months after discharge (T2), and 12 months after discharge (T3). Repeated-measures analysis of variance of FQOL scores was used to evaluate difference. RESULTS: Full scores and each subscale's scores on FQOL in the control group and the intervention group at T1 had no statistical significance (P > .05). Scores on FQOL at T2 and T3 increased in the intervention group, but there was almost no change in the control group, with statistical significance between the intervention group and the control group (P < .05). Scores on FQOL at T1, T2, and T3 showed that score of subscale except parenting FQOL improved in the intervention group (P < .05), but no difference was shown in the control group (P > .05). There was no difference shown among the control group and the intervention group that interacted with time (P > .05). CONCLUSION: The family management style can effectively improve the family quality of life in children with epilepsy, especially at the satisfaction level of family emotional well-being and disability-related support.


Assuntos
Gerenciamento Clínico , Epilepsia/enfermagem , Relações Familiares/psicologia , Qualidade de Vida/psicologia , Adulto , Pré-Escolar , China , Feminino , Serviços de Assistência Domiciliar , Humanos , Masculino , Pais/psicologia , Inquéritos e Questionários
6.
J Clin Nurs ; 29(7-8): 1352-1364, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-31972049

RESUMO

BACKGROUND: Research to support the added value of including Epilepsy Specialist Nurses as members of the multidisciplinary team is developing, yet little information exists on factors influencing the translation of these roles into practice. AIM: To describe the enabling and inhibiting factors to the implementation of the Epilepsy Specialist Nurse role in the Republic of Ireland. METHODS: A qualitative design involving semi-structure interviews, observation and analysis of documents, such as portfolios was used. The sample included 12 Epilepsy Specialist Nurses, 24 multidisciplinary team members, and 35 individuals with epilepsy and family members. Data were analysed using the Consolidation Framework for Implementation Research. Reporting rigour is demonstrated using the COREQ checklist (See Appendix S1). RESULTS: While there was overwhelming support for the role, barriers and enablers were identified across all domains of the Consolidation Framework for Implementation Research. Enablers included national policies and guidelines, leadership from senior nursing and medical colleagues, climate of learning and mentorship, networking opportunities, infrastructural supports and competence of Epilepsy Specialist Nurses. Barriers included the limited consideration of service expansion and the increasingly complex nature of clinical cases on workload capacity. Deficits in infrastructural supports, challenges in relation to role preparation, role implementation and role responsibility, including concerns around lone practitioner models and concerns that the role was a cost-saving measure, also emerged as potential barriers to future sustainability. CONCLUSION: The Consolidation Framework for Implementation Research offers researchers a pragmatic typology for analysing interrelationships between enabling and inhibiting factors that impact implementation of advanced practice roles, across different evidence sources, disciplines and boundaries. RELEVANCE TO CLINICAL PRACTICE: In order to secure role sustainability, managers need to address the rate of service expansion, models of role development, deficits in supports and perceived motivations for role development on the quality, acceptability and sustainability of services provided.


Assuntos
Epilepsia/enfermagem , Enfermeiros Especialistas/organização & administração , Papel do Profissional de Enfermagem , Humanos , Irlanda , Liderança , Desenvolvimento de Programas , Pesquisa Qualitativa
7.
Neurocrit Care ; 32(2): 512-521, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-31270671

RESUMO

BACKGROUND/OBJECTIVE: Informal caregivers (e.g., family and friends) are at risk for developing depression, which can be detrimental to both caregiver and patient functioning. Initial evidence suggests that resiliency may reduce the risk of depression. However, gender differences in associations between multiple psychosocial resiliency factors and depression have not been examined among neuroscience intensive care unit (neuro-ICU) caregivers. We explored interactions between caregiver gender and baseline resiliency factors on depression symptom severity at baseline through 3 and 6 months post-discharge. METHODS: Caregivers (N = 96) of neuro-ICU patients able to provide informed consent to participate in research were enrolled as part of a prospective, longitudinal study in the neuro-ICU of a major academic medical center. Caregiver sociodemographics and resiliency factors (coping, mindfulness, self-efficacy, intimate care, and preparedness for caregiving) were assessed during the patient's hospitalization (i.e., baseline). Levels of depressive symptoms were measured using the Hospital Anxiety and Depression Scale at baseline, 3 months, and 6 months post-discharge. RESULTS: Baseline depressive symptoms predicted depressive symptoms at both 3- and 6-month follow-ups, with no difference at any time point in rates of depression by gender. At baseline, greater levels of coping, mindfulness, and preparedness for caregiving were individually associated with lower levels of concurrent depression regardless of gender (ps < 0.006). The main effect of baseline coping remained significant at 3-month follow-up (p = 0.045). We observed a trend-level interaction between gender and baseline intimate care, such that among male caregivers only, high baseline intimate care was associated with lower depression at 3-month follow-up (p = 0.055). At 6-month follow-up, we observed a significant interaction between caregiver gender and baseline intimate care, such that male caregivers reporting high intimate care reported lower symptoms of depression than females reporting high intimate care (p = 0.037). CONCLUSIONS: Results support implementation of psychosocial resiliency interventions for caregivers of patients admitted to the neuro-ICU early in the recovery process. Male caregivers may particularly benefit from strategies focused on increasing intimate care (e.g., physical and emotional affection with their loved one) and quality of the patient-caregiver dyadic relationship.


Assuntos
Adaptação Psicológica , Neoplasias Encefálicas/enfermagem , Cuidadores/psicologia , Transtornos Cerebrovasculares/enfermagem , Depressão/psicologia , Relações Interpessoais , Apego ao Objeto , Resiliência Psicológica , Adulto , Idoso , Lesões Encefálicas Traumáticas/enfermagem , Estado Terminal , Epilepsia/enfermagem , Família/psicologia , Feminino , Humanos , Unidades de Terapia Intensiva , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Atenção Plena , Autoeficácia , Fatores Sexuais , Cônjuges/psicologia , Sobreviventes
8.
Horiz. enferm ; 31(2): 192-203, 2020.
Artigo em Espanhol | BDENF - Enfermagem, LILACS | ID: biblio-1140940

RESUMO

INTRODUCCIÓN: Los trastornos mentales, como La depresión, pueden estar presentes en la vida de las personas con epilepsia, acompañados de aislamiento, dificultades com El estudio y El trabajo, así como El riesgo de suicidio. OBJETIVO: identificar síntomas sugestivos de depresión en personas con epilepsia y sus cuidadores. MÉTODO: entrevistas realizadas por una enfermera que utilizó el enfoque de relación terapéutica. Al final de La recopilación de datos, el entrevistador dijo: "¿Hay algo más que le gustaría que supiéramos? "Aprobado por el Comité de Ética. RESULTADOS: de los 75 sujetos, 49 eran personas con epilepsia y 26 eran cuidadores. Los sujetos informaron intento de suicidio (25%) y bajo riesgo de consumo de alcohol (100%). Informó el uso de drogas ilícitas como el crack y la cocaína e dependencia nicotínica. Las personas con depresión y epilepsia representan el 36% y el 66% tenían síntomas indicativos de ansiedad. Los cuidadores informaron que el 81% de las NP dependen de su cuidado. El 88.5% de los cuidadores informaron sobrecarga para el cuidado de la EP (50% moderado y 27% moderado a severo). CONCLUSIONES: El tipo de enfoque para recopilar datos de investigación, en forma de interacción de ayuda, contribuyó a promover un entorno terapéutico, expandió la escucha de enfermería calificada con el manejo de situaciones de crisis y sus consecuencias. La relación interpersonal califica la atención de enfermería en salud mental para personas con epilepsia. Las técnicas de enfoque interpersonal facilitan el uso de procedimientos de recopilación de datos de investigación.


INTRODUCTION: Mental disorders, suchas depression, may be present in the lives of people with epilepsy, accompanied by isolation, difficulties with study and work, as well as the risk of suicide. OBJECTIVE: to identify symptoms suggestive of depression in people with epilepsy and their caregivers, in interviews conducted by the nurse who used the therapeutic relationship approach. Material and METHOD: During the collection of the data on depressive symptoms, the interviewer gave them the opportunity to speak freely about their problems, welcoming and guiding their doubts. Project approved by the Ethics Committee. RESULTS: Of the 75 subjects, 49 were people with epilepsy and 26 were their caregivers. Subjects reported suicide attempt (25%) and low risk of alcohol consumption (100%). They will also inform the use of illicit drugs such as crack and cocaine and nicotinic dependence. People with depression and epilepsy represent 36% and 66% had symptoms indicative of anxiety. Caregivers reported that 81% of epileptics depend on their care. 88.5% ofcaregivers reported overload for caring for people with epilepsy (50% moderate and 27% moderate to severe). CONCLUSIONS:This approach to collecting research data, in the form of help interaction, contributed to promoting a therapeutic environment, expanded skilled listening with the management of crisis situations and their consequences. The interpersonal relationship qualifies mental health nursing care for people with epilepsy and facilitates the use of research data collection procedures.


Assuntos
Humanos , Masculino , Feminino , Cuidadores/psicologia , Depressão/diagnóstico , Epilepsia/psicologia , Ansiedade/diagnóstico , Consumo de Bebidas Alcoólicas , Saúde Mental , Entrevistas como Assunto , Inquéritos e Questionários , Medição de Risco , Epilepsia/enfermagem , Ideação Suicida , Uso de Tabaco , Relações Interpessoais
9.
Int J Palliat Nurs ; 25(11): 531-540, 2019 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-31755831

RESUMO

BACKGROUND: People with learning disability (LD) have complex comorbidities that develop at an earlier age than the general population and with which they are now living longer. Identification, assessment and management of these conditions is important but challenging. AIM: To develop resources with care staff to enable them to recognise and manage changes and decline in the health of a person with a LD. METHODS: Two resources (PIP-LD and CIRC) were developed through undertaking a literature review; networking with experts; and collaborating with staff in the care homes for people with a LD. Care staff then used these resourcesto review their residents. FINDINGS: The PIP-LD and CIRC were used in 39 care homes. The PIP-LD empowered staff to meet people's immediate health needs, and the CIRC helped them to recognise changes or a decline. CONCLUSIONS: The combined use of the PIP-LD and the CIRC enabled care staff to recognise the signs and symptoms of each person's comorbidities early, and to identify and manage changes when their health declined.


Assuntos
Deficiência Intelectual/enfermagem , Múltiplas Afecções Crônicas/enfermagem , Cuidados Paliativos , Instituições Residenciais , Adolescente , Adulto , Planejamento Antecipado de Cuidados , Idoso , Idoso de 80 Anos ou mais , Transtorno do Espectro Autista/epidemiologia , Transtorno do Espectro Autista/enfermagem , Doenças Cardiovasculares/epidemiologia , Doenças Cardiovasculares/enfermagem , Comorbidade , Diabetes Mellitus/epidemiologia , Diabetes Mellitus/enfermagem , Síndrome de Down/epidemiologia , Síndrome de Down/enfermagem , Epilepsia/epidemiologia , Epilepsia/enfermagem , Feminino , Síndrome do Cromossomo X Frágil/epidemiologia , Síndrome do Cromossomo X Frágil/enfermagem , Humanos , Deficiência Intelectual/epidemiologia , Deficiências da Aprendizagem/epidemiologia , Deficiências da Aprendizagem/enfermagem , Masculino , Transtornos Mentais/epidemiologia , Transtornos Mentais/enfermagem , Pessoa de Meia-Idade , Doenças do Sistema Nervoso/epidemiologia , Doenças do Sistema Nervoso/enfermagem , Planejamento de Assistência ao Paciente , Doenças da Glândula Tireoide/epidemiologia , Doenças da Glândula Tireoide/enfermagem , Adulto Jovem
10.
Epilepsy Behav ; 100(Pt A): 106497, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31645004

RESUMO

BACKGROUND: Lack of knowledge about epileptic seizure management and negative attitudes toward children with epilepsy among nursing students may negatively affect the quality of healthcare services they deliver. AIM: This study aimed to examine the effect of training given to nursing students using simulation and standard child mannequins on their childhood epileptic seizure management knowledge, skills, and attitudes. METHODS: Participants (n = 72) were recruited from a Nursing Faculty in Izmir, Turkey. Students were randomly assigned to the intervention and control groups (n = 36 in each). The intervention group received simulation-based training on epilepsy while the control group received standard child mannequin training on epilepsy. One week after the training, the students were asked to demonstrate their epileptic seizure management knowledge and skills on a simulation model or a standard child mannequin. During this process, they were observed and assessed by two independent observers on the basis of a list of epileptic seizure management skills. All participants completed the personal information form, the Epilepsy and Epileptic Seizure Management Knowledge Test, and the Epilepsy Knowledge and Attitude Scale before, and after the training, McNemar's test, repeated measure ANOVA (intravenous), dependent t-test, chi-square test, Fisher's exact test, independent t-test, Pearson's correlation analysis, and Pearson's chi-square test were used to compare the groups. Intraclass correlation coefficient (ICC) was used to evaluate the consistency between observers. RESULTS: The epilepsy knowledge scale mean scores of both groups significantly increased after their respective trainings (p < 0.001), but the difference between the groups was not statistically significant (p = 0.829). There was no statistically significant difference between the pre- and posttraining epilepsy attitude scale mean scores of the control group (p = 0.630), however, a statistically significant increase was observed in the epilepsy attitude scale mean score of the intervention group (p = 0.008). In addition, both groups' self-confidence in epileptic seizure management significantly increased after the training (p = 0.000). CONCLUSIONS: Simulation-based training was beneficial for students insofar as it helped them to develop positive attitudes toward epilepsy.


Assuntos
Educação em Enfermagem/métodos , Epilepsia/enfermagem , Conhecimentos, Atitudes e Prática em Saúde , Pediatria/educação , Convulsões/enfermagem , Treinamento por Simulação/métodos , Adulto , Criança , Epilepsia/psicologia , Feminino , Humanos , Masculino , Manequins , Autoimagem , Estudantes de Enfermagem/psicologia , Inquéritos e Questionários , Turquia
12.
Seizure ; 71: 132-139, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31325820

RESUMO

PURPOSE: The literature on caregiver burden tends to focus on children and teenagers with epilepsy and less on adults. As caregiving is a dynamic, complex process across the trajectories, this study aims to examine the factors associated with caregiving burden in those caring for adults with epilepsy. METHOD: This is a cross-sectional, survey-based study in which participants responded to questionnairesregarding perceived burden (ZBI), quality of life (IEQoL), psychological distress (DASS-21), family functioning (FAD) and perceived social support (MSPSS). Additional measures include socio-demographics and clinical characteristics of the care-recipient. RESULTS: A total of 111 caregivers participated, of whom 72.1% were females, 55% parents, 59.5% Chinese, 51.4% unemployed and 46.0% with tertiary education.Approximately half (42.3%) reported mild-to-moderate levels of burden (mean ZBI score 29.93, SD 16.09).Furthermore, multiple regression analysisidentified10 predictors of caregiver burden, namely family functioning, weekly caregiving hours, number of caregivers per family, attitude towards epilepsy, family support, caregivers' gender, personal income and as well as care-recipients' age of onset, seizure frequency and ADL dependency (F(10, 85) = 11.37, p < 0.001). Stepwise regression highlighted family functioning as the main predictor (ß = 0.299, p < 0.001). The total ZBI score was positively correlated with caregivers' reported levels of depression (r = 0.549, p < 0.001), anxiety (r = 0.599, p < 0.001) and stress (r = 0.576, p < 0.001) subscales in DASS-21, and negatively correlated with IEQoL (r=-0.637, p < 0.001). CONCLUSION: This study shows that caregivers' burden is highly associated with the family system (family functioning, support and number of caregivers), besides demographics, psychosocial and clinical characteristics. Future research is required to learn how to support this sub-group of caregivers within the family system.


Assuntos
Ansiedade/psicologia , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Depressão/psicologia , Epilepsia/enfermagem , Família/psicologia , Qualidade de Vida/psicologia , Estresse Psicológico/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade/etiologia , Estudos Transversais , Depressão/etiologia , Feminino , Humanos , Malásia , Masculino , Pessoa de Meia-Idade , Estresse Psicológico/etiologia , Adulto Jovem
13.
BMC Neurol ; 19(1): 161, 2019 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-31315592

RESUMO

BACKGROUND: Epilepsy is a common neurological disease with substantial impact on the subject and their caretakers. This exploratory study identified barriers to care for persons living with epilepsy (PLWE) to develop a culturally acceptable nurse led self-management intervention for PLWE previously developed in the United States. METHODS: The study involving 48 participants (31 PLWE and 17 caregivers) with in depth interviews and focus groups was conducted. We obtained insights into barriers to care in PLWE and their caregivers. Using a thematic analytic procedure emphasizing the dominant themes the qualitative responses were analyzed. Median age of PLWE was 24 years (IQR 19-30), and10 (52.6%) were male. The median age of epilepsy onset was 12 years (IQR 6-18), range of 1-37 years. The median age of caregivers was 50 years (IQR 45-50.5), with a range of 18-78 years. Seventy five percent of caregivers (6/8) were females. RESULTS: Three major areas of perceived barriers involving individual, family or community and provider and healthcare system barriers to epilepsy care emerged. Individual factors like limited epilepsy knowledge and medication non-adherence were reported to be key barriers to epilepsy care. Caregiver burden and lack of family support as well as poor health care access were identified from the family and health care systems. CONCLUSIONS: The main barrier to epilepsy care is limited epilepsy knowledge in PLWE and their caregivers. Improving epilepsy care awareness and knowledge within communities and appropriate health care provider service for epilepsy would help reduce epilepsy barriers and improve care.


Assuntos
Cuidadores/psicologia , Epilepsia/psicologia , Acessibilidade aos Serviços de Saúde , Adolescente , Adulto , Idoso , Criança , Pré-Escolar , Epilepsia/enfermagem , Feminino , Grupos Focais , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Autogestão , Uganda , Adulto Jovem
14.
BMC Pediatr ; 19(1): 215, 2019 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-31262261

RESUMO

BACKGROUND: Parents of children with chronic illness have reported decreased psychological and physical quality of life (QoL) relative to parents of children without such illness, which may be associated with the extent of complexity involved in the caregiving role. Given that coping strategies have been reported to influence QoL, our goal was to synthesize existing research about the association between coping strategies and QoL in caregivers of children with chronic illness. We were particularly interested in whether coping strategies may mediate the association between caregiving complexity and QoL, or may modify the association. METHODS: We developed an electronic search strategy to identify relevant citations in Medline, EMBASE, PsycINFO and CINAHL. Two reviewers independently assessed retrieved citations against pre-specified inclusion criteria in two stages of screening. One reviewer abstracted data on study characteristics, methods to address confounding, measurement tools, risk of bias, and results with respect to associations of interest. A second reviewer validated extracted data. We summarized results narratively. RESULTS: 2602 citations were screened and 185 full-text articles reviewed. The 11 articles that met inclusion criteria addressed 5 diseases and included a total of 2155 caregivers. Ten of the 11 included studies were cross-sectional. We identified some evidence that coping was associated with QoL: in three studies, coping strategies considered to be adaptive were positively associated with psychological QoL while in one study, maladaptive strategies were negatively associated with psychological QoL. Only two studies considered coping as a potential mediating variable in the association between caregiving complexity and parental QoL, with inconsistent findings and challenges in interpreting cross-sectional associations. No studies considered coping as a moderating variable. The variability among instruments used to measure key constructs, particularly coping strategies, made it difficult to synthesize results. CONCLUSIONS: We found that coping strategies may be associated with psychological QoL among parents of children with chronic illness. We also identified important research gaps related to the consistent and clear measurement of coping strategies and their prospective association with QoL. Understanding how coping strategies are associated with QoL is important to inform the development of interventions to support families of children with chronic illness.


Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Doença Crônica/enfermagem , Crianças com Deficiência , Pais/psicologia , Qualidade de Vida/psicologia , Adolescente , Transtorno Autístico/enfermagem , Paralisia Cerebral/enfermagem , Criança , Estudos Transversais , Diabetes Mellitus Tipo 1/enfermagem , Diabetes Mellitus Tipo 2/enfermagem , Epilepsia/enfermagem , Feminino , Hemofilia A/enfermagem , Humanos , Masculino , Ensaios Clínicos Controlados Aleatórios como Assunto
15.
Seizure ; 71: 42-49, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31203026

RESUMO

PURPOSE: To explore how Epilepsy Specialist Nurses in the Republic of Ireland enacted their clinical role. METHODS: Qualitative descriptive design that involved individual and focus group interviews, observation and documentary analysis. Data were collected from 12 Epilepsy Specialist Nurses working in five hospital-based epilepsy services in Ireland, 24 multidisciplinary team members, and 35 people with epilepsy and their family members were involved. Data were analysed in NVivo using an inductive and deductive approach. RESULTS: Epilepsy Specialist Nurses work out of a value base that gives primacy to collaboration. active participation, relationship-based care, and respect for the voices of PWE and family members. They are key players in empowering people to self-manage their illness, Core dimensions of their clinical role includes: performing a comprehensive assessment to inform care and treatment; providing person-centred education; monitoring the impact of care and treatment; providing education to family members and significant others; providing psychosocial care to optimise psychological wellness; co-ordinating care to enhance patients' journey; and quality assuring patient information. CONCLUSION: Findings from this study highlight the key role ESNs played as members of the MDT in building and supporting PWE's capacity to self-manage their illness. However, they also indicate deficits in the provision of information on sudden unexpected death in epilepsy and how to disclose a diagnosis of epilepsy by the ESN, as well deficits in their knowledge and confidence in supporting people experiencing significant mental health morbidities.


Assuntos
Prática Avançada de Enfermagem , Empoderamento , Epilepsia/enfermagem , Conhecimentos, Atitudes e Prática em Saúde , Enfermeiros Clínicos , Papel do Profissional de Enfermagem , Pesquisa Qualitativa , Autogestão , Adulto , Humanos , Irlanda , Apoio Social
16.
Prof Inferm ; 72(1): 34-41, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31162041

RESUMO

BACKGROUND: Epilepsy is frequently accompanied by learning, behavioural and psychological difficulties, therefore the management of this pathology extends far beyond the use of antiepileptic drugs. The specialist-nurse-service provides a multifaceted management. This study adds new points of view on how epilepsy-specialist-nurses work, the benefits they produce and their feedback. OBJECTIVES: The study was conducted to analyse the role of the epilepsy-specialist-nurse, its competencies, its impact on patients and healthcare system and its relevance in patient and medical-staff perceptions, to give new suggestions on how it can be useful in epilepsy teams. METHOD: Literature review to analyse epilepsy-specialist-nurse role; a quantitative research with descriptive approach to examine patients' (11) perceptions using a novel-questionnaire; applied qualitative analysis of medical staff (4) perceptions through semi-structured interviews. RESULTS: The epilepsy-specialist-nurse has the competences to manage the epilepsy-related issues that extend beyond medications. Patients value the ability of specialist-nurses to answer their multifaceted needs, to dedicate them enough time to discuss the impact of epilepsy on everyday-life and their feelings, giving suggestions. Doctors collaborating with specialist-nurses recognize their valuable contribute. Doctors give more information on epilepsy and medication-issues: patients prefer to consult a doctor for these issues. CONCLUSION: The holistic way adopted by specialist-nurses in addressing patients' needs is fundamental to improve patients' health and well-being. Medical and nursing ability to address epilepsy-related issues in a very similar way - in the items analysed - may reveal that specialist-nurses can provide high-quality assistance while achieving cost-savings. It is needed to develop a structured pathway that allows the progression of specialist-nursing, to define a clear job description, and to obtain government recognition.


Assuntos
Epilepsia/enfermagem , Papel do Profissional de Enfermagem , Especialidades de Enfermagem , Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Criança , Pesquisas sobre Atenção à Saúde , Humanos
17.
Epilepsy Behav ; 94: 239-242, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30978636

RESUMO

OBJECTIVE: The objective of the study was to explore stress levels in the parents of children with idiopathic epilepsy at different time points of the disease, specifically, at the time of diagnosis, during follow-up, and 1 and 2 years after discontinuation of antiepileptic drugs. METHODS: Our study included 50 patients between 5 and 14 years of age, who were diagnosed with childhood absence epilepsy or idiopathic focal epilepsy with Rolandic paroxysms. Parents of the participants independently completed the Parenting Stress Index-Short Form at the time of initial diagnosis, and when the children started antiepileptic drugs (Time 0), and at 1 year (Time 1) and 2 years (Time 2) after discontinuation of therapy. RESULTS: At Time 0, parental stress levels were increased, both in mothers and fathers, with average scores in the "clinical range" of the parental distress (PD), dysfunctional parent-child interaction (P-CDI), and total stress (TS) scales. At Time 1, the scores on these scales remained high. At Time 2, a mild reduction in the stress scores was observed in both parents, despite values remaining in the "clinical range" for all the scales. CONCLUSIONS: Results suggested that parents of children with epilepsy were not reassured about the child's condition, even after clinical improvement. Parental stress levels remained higher than expected, even 2 years after the discontinuation of therapy and freedom from seizures. This was probably due to concerns with the reappearance of new seizures or a more severe type of epilepsy with the discontinuation of drug(s), and feelings of inadequacy with their parental role(s).


Assuntos
Anticonvulsivantes/uso terapêutico , Epilepsia/terapia , Pais/psicologia , Estresse Psicológico/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Epilepsia/tratamento farmacológico , Epilepsia/enfermagem , Feminino , Humanos , Masculino
18.
Br J Nurs ; 28(6): 348-354, 2019 Mar 28.
Artigo em Inglês | MEDLINE | ID: mdl-30925235

RESUMO

AIM:: this study examined a brief lifestyle self-management intervention, based on self-determination theory, to manage seizure frequency, and its effects on health-related quality of life and resilience in people with epilepsy aged over 18 years. BACKGROUND:: most people with epilepsy can identify factors that may trigger seizures and may try to avoid these; however, education from clinicians on this varies. DESIGN:: a cohort study with control design. METHOD:: sixty participants were purposively sampled and allocated to an intervention or a control group. RESULTS:: moderate correlations were found, particularly between: resilience and satisfaction with life; medication adherence and psychological quality of life; and psychological quality of life and satisfaction with life. The mean seizure occurrences between the control and intervention groups were 12.71 (SD 24.55) and 6.76 (SD 13.40) respectively after the intervention. While the study was not powered to assess this, the intervention may be most effective regarding medication adherence and physical health quality of life. CONCLUSION:: the relationship between self-efficacy and seizure management appeared to be strengthened by the programme. This study is the first known to measure resilience in relation to lifestyle self-management for seizure control in people with epilepsy. Relevance to practice: nurses are well placed to work with patients' strengths towards self-efficacy and potentially resilient coping.


Assuntos
Epilepsia/psicologia , Educação de Pacientes como Assunto , Adolescente , Adulto , Estudos de Coortes , Epilepsia/enfermagem , Feminino , Humanos , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Autogestão , Resultado do Tratamento , Adulto Jovem
19.
Rev Neurol (Paris) ; 175(3): 189-193, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-30683450

RESUMO

Epilepsy, often considered as a stigmatizing disease, affects 65 million people worldwide and is frequently associated with comorbidities that increase both direct and indirect costs. The degree of impact on quality of life and the cost of care differs depending on the social and health care organizations in place, political, medico-economic and/or socio-cultural contexts. Across the globe, healthcare is provided by nurses in primary care, urgent or emergency care, and within specialized domains of practice. In Epilepsy the global care could be enhanced by developing standardized nursing education in close collaboration with other caregivers. The impact of epilepsy nursing care has been documented in some developed countries, but the diversity of nursing practices and professional education of nurses raise difficulties in generalizing these findings. Specialized education in epilepsy will improve access, treatment and ultimately the quality of life of patients.


Assuntos
Educação em Enfermagem/normas , Epilepsia/enfermagem , Neurocirurgia/enfermagem , Enfermeiros Especialistas , Papel do Profissional de Enfermagem , Padrões de Prática em Enfermagem/normas , Educação em Enfermagem/estatística & dados numéricos , Epilepsia/epidemiologia , Geografia , Humanos , Neurocirurgia/educação , Neurocirurgia/estatística & dados numéricos , Enfermeiros Especialistas/educação , Enfermeiros Especialistas/normas , Enfermeiros Especialistas/estatística & dados numéricos , Padrões de Prática em Enfermagem/estatística & dados numéricos
20.
Seizure ; 65: 98-100, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30660000

RESUMO

PURPOSE: Healthcare organisations in the UK primarily measure clinical activity from data collected on numbers of attendances at outpatient clinics, inpatient admissions and procedures performed etc. Telephone contacts with patients are not typically measured as clinical activity. This service evaluation examines the utility and value of the Epilepsy Specialist Nurse (ESN) within an innovative 'Open Access Model', giving a breakdown of clinical workload and outcomes. METHODS: A retrospective service evaluation analysing all patient encounters made by the ESN and their outcomes, over a 3-month period from the 01/02/2017 to 30/04/2017. RESULTS: During the 3-month data collection period there were 620 patient encounters with 251 different patients. Nurse-led clinic appointments and telephone calls were the two most common types of encounter. Eighteen percent of ESN time was spent on the phone directly addressing patient concerns (368 encounters). Of these calls, 72% led to prevention of a clinic appointment (268 appointments avoided) while only 22% needed a subsequent clinic appointment. The most common outcome of telephone encounters was 'medication management' (25%). CONCLUSIONS: The evaluation demonstrates that timely intervention by telephone reduces the need for outpatient appointments and leads to treatment changes being implemented quickly to address individual need.


Assuntos
Epilepsia/enfermagem , Enfermeiros Clínicos/psicologia , Encaminhamento e Consulta , Acesso à Informação , Atenção à Saúde , Registros Eletrônicos de Saúde/estatística & dados numéricos , Feminino , Humanos , Masculino , Estudos Retrospectivos , Telefone
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