Aim: This article is a report of a study that aimed to explore Epilepsy Specialist Nurses' perceptions of their professional role and the factors that may affect their practice.
Background: Previous studies have demonstrated high patient satisfaction with the Epilepsy Specialist Nurse. Although UK national guidelines recommend that all individuals with epilepsy should have access to an epilepsy specialist nurse, many National Health Service trusts disregard these guidelines. The need to introduce cost efficiencies in the National Health Service means that the future of some epilepsy specialist nurses is threatened.
Design: A qualitative study using focus groups was designed to elicit a rich understanding of the epilepsy specialist nurse role and its current challenges.
Methods: Three focus groups were held with a total of 19 participants in the summer of 2009. Data were subjected to thematic framework analysis.
Findings: The work was underpinned by high commitment to nursing values, which helped to define the role. Epilepsy specialist nurses were often the sole providers of expert and personalized care to meet patients' complex needs. Policy and financially driven changes undermined professional identity and led to service diminution.
Conclusion: . The provision of epilepsy care in England remains variable and access to epilepsy specialist nurses is inequitable. Trusts are being seduced by the cost savings of reducing a specialist service but consequent gaps in service may drive up costs elsewhere. The challenge is for epilepsy specialist nurses to demonstrate their unique place in enhancing patient care and in improving health and well-being.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1111/j.1365-2648.2012.05941.x | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Treatment of Seizures in People with Intellectual Disability.
CNS Drugs
January 2025
Cornwall Intellectual Disability Equitable Research (CIDER), University of Plymouth, Truro, England.
There is a synergistic relationship between epilepsy and intellectual disability (ID), and the approach to managing people with these conditions needs to be holistic. Epilepsy is the main co-morbidity associated with ID, and clinical presentation tends to be complex, associated with higher rates of treatment resistance, multi-morbidity and premature mortality. Despite this relationship, there is limited level 1 evidence to inform treatment choice for this vulnerable population.
View Article and Find Full Text PDFPrecision therapy for Developmental delay, Epilepsy and Neonatal Diabetes syndrome in the era of genomics.
Med J Armed Forces India
December 2024
Director & Commandant, Armed Forces Medical College, Pune, India.
Neonatal diabetes mellitus is a rare disorder with prevalence of one in 400,000 live births that's defined by persistent hyperglycaemia within the first six months of life. Neonatal diabetes is heterogeneous and can be transient or permanent. Developmental delay, Epilepsy and Neonatal Diabetes (DEND) syndrome is characterised by developmental delay, epilepsy, and neonatal diabetes.
View Article and Find Full Text PDFHeterozygous UBR5 variants result in a neurodevelopmental syndrome with developmental delay, autism, and intellectual disability.
Am J Hum Genet
January 2025
Department of Genetics, CHU Sainte-Justine, Montréal, QC, Canada. Electronic address:
E3 ubiquitin ligases have been linked to developmental diseases including autism, Angelman syndrome (UBE3A), and Johanson-Blizzard syndrome (JBS) (UBR1). Here, we report variants in the E3 ligase UBR5 in 29 individuals presenting with a neurodevelopmental syndrome that includes developmental delay, autism, intellectual disability, epilepsy, movement disorders, and/or genital anomalies. Their phenotype is distinct from JBS due to the absence of exocrine pancreatic insufficiency and the presence of autism, epilepsy, and, in some probands, a movement disorder.
View Article and Find Full Text PDFYield of Tilt Table Test in Diagnosing Syncope in Patients With Suspected Neurally Mediated Syncope.
Cardiol Res
December 2024
Biostatistics, Epidemiology, and Scientific Computing Department, King Faisal Specialist Hospital and Research Center (KFSH&RC), Riyadh, Saudi Arabia.
Background: Syncope is a common medical condition. The reflex or neurally mediated syncope (NMS) is the most frequent type. The tilt table test (TTT) helps distinguish syncope from other common causes of complete loss of consciousness, such as epilepsy, define syncope subtypes and guide management.
View Article and Find Full Text PDFHealth Disparities and Hormone Therapy Prescribing for Early, Peri-, and Postmenopausal Women: A Scoping Review.
J Racial Ethn Health Disparities
December 2024
Department of Obstetrics and Gynecology, Case Western Reserve University School of Medicine, The MetroHealth System, Cleveland, OH, USA.
Article Synopsis
- - This study explored whether there are health disparities in the prescription and use of menopause hormone therapy among perimenopausal and early postmenopausal women in the USA, by reviewing observational studies from 1940 until October 2023.
- - Researchers found 16 different health disparities related to hormone therapy, noting significant differences based on ethnicity, education, medical conditions, and practitioner specialization.
- - The findings indicate long-standing disparities in hormone therapy access and usage, highlighting the need for improved education for healthcare providers to better serve underserved populations.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!