Revista Científica de la Sociedad de Enfermería Neurológica (English ed.)最新文献

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Efficacy of virtual reality on Health Literacy in patients with stroke: randomized pilot clinical trial 虚拟现实对中风患者健康素养的影响:随机试点临床试验
Revista Científica de la Sociedad de Enfermería Neurológica (English ed.) Pub Date : 2025-01-01 Epub Date: 2024-10-09 DOI: 10.1016/j.sedeng.2024.100161
Patricia Blázquez-González , Rubén Mirón-González , Alejandro Lendínez-Mesa , María Teresa Camacho Arroyo , Noelia Mancebo-Salas , Raquel Luengo-González , Silvia Herranz-Herranz , Roberto Antonio López Manrique , Jose Luis Cobo-Sánchez , Zulema González-Gancedo , María-Nieves Moro-Tejedor
{"title":"Efficacy of virtual reality on Health Literacy in patients with stroke: randomized pilot clinical trial","authors":"Patricia Blázquez-González ,&nbsp;Rubén Mirón-González ,&nbsp;Alejandro Lendínez-Mesa ,&nbsp;María Teresa Camacho Arroyo ,&nbsp;Noelia Mancebo-Salas ,&nbsp;Raquel Luengo-González ,&nbsp;Silvia Herranz-Herranz ,&nbsp;Roberto Antonio López Manrique ,&nbsp;Jose Luis Cobo-Sánchez ,&nbsp;Zulema González-Gancedo ,&nbsp;María-Nieves Moro-Tejedor","doi":"10.1016/j.sedeng.2024.100161","DOIUrl":"10.1016/j.sedeng.2024.100161","url":null,"abstract":"<div><h3>Objective</h3><div>To evaluate the effectiveness of virtual reality on the degree of Health Literacy, before and after the use of virtual reality with the Nintento Switch® device in patients with a diagnosis of stroke admitted to neurorehabilitation units.</div></div><div><h3>Methodology</h3><div>Twelve patients admitted to a neurorehabilitation unit underwent a 1:3 randomised clinical trial (intervention group: control group). The intervention group consisted of 4 patients and the control group consisted of 8 patients. The control group performed conventional rehabilitation and the intervention group, in addition to conventional rehabilitation, had a 20-min virtual reality intervention once a week for 6 weeks. Clinical outcomes were measured for the literacy variable before the intervention and 6 weeks after the intervention in both the control group and the intervention group.</div></div><div><h3>Results</h3><div>An improvement in literacy was obtained in the control group (9 vs. 9.38; p = 0.18) and in the intervention group (13.75 vs. 14.25; p = 0.31) after the 6 weeks duration of the study. Comparing the intervention group and the control group, the literacy level of the intervention group was higher after the intervention than in the CG (14.25 vs. 9.38: p = 0.20), but no statistically significant results were obtained.</div></div><div><h3>Conclusion</h3><div>Virtual reality used together with conventional treatment seems to improve the degree of literacy of stroke patients admitted to neurorehabilitation units.</div></div>","PeriodicalId":101097,"journal":{"name":"Revista Científica de la Sociedad de Enfermería Neurológica (English ed.)","volume":"61 ","pages":"Article 100161"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143637658","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Art therapy in the improvement of cognitive well-being in patients with dementia: Literature review 艺术疗法对痴呆患者认知健康的改善:文献综述
Revista Científica de la Sociedad de Enfermería Neurológica (English ed.) Pub Date : 2025-01-01 Epub Date: 2024-10-11 DOI: 10.1016/j.sedeng.2024.100154
Jesús Sánchez-Lozano , Sandra Martínez-Pizarro
{"title":"Art therapy in the improvement of cognitive well-being in patients with dementia: Literature review","authors":"Jesús Sánchez-Lozano ,&nbsp;Sandra Martínez-Pizarro","doi":"10.1016/j.sedeng.2024.100154","DOIUrl":"10.1016/j.sedeng.2024.100154","url":null,"abstract":"<div><h3>Introduction</h3><div>Dementia affects fifty million individuals worldwide. It includes emotional problems and decreased motivation that interfere with daily life. In recent years, art therapy has been proposed to improve the physical and psychological well-being of these patients.</div></div><div><h3>Objective</h3><div>The objective of this review is to update the information on the efficacy of art therapy in the cognitive and psychological well-being of patients with dementia.</div></div><div><h3>Method</h3><div>A bibliographic search was carried out in Pubmed, Lilacs, IBECS and CENTRAL databases following the PRISMA recommendations. Studies conducted in the last 5 years, in Spanish or English, with full text and high methodological quality are selected.</div></div><div><h3>Results</h3><div>Art therapy with painting, visual art therapy, visual arts education program and remote expressive arts program are effective in patients with dementia. The total number of studies in the review was five. The frequency of the sessions was one per week, the total number of sessions was 8–12, and the duration of the program ranged from 6 to 12 weeks.</div></div><div><h3>Conclusion</h3><div>There are few quality art therapy items that have been shown to be effective for the patient and their caregiver. However, some reviewed studies show some kind of benefit in cognitive and psychological well-being and quality of life; for this reason, research in this field must be increased.</div></div>","PeriodicalId":101097,"journal":{"name":"Revista Científica de la Sociedad de Enfermería Neurológica (English ed.)","volume":"61 ","pages":"Article 100154"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143637655","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Humanisation and health: More than a need 人性化与健康:不仅仅是一种需要
Revista Científica de la Sociedad de Enfermería Neurológica (English ed.) Pub Date : 2025-01-01 Epub Date: 2025-03-10 DOI: 10.1016/j.sedeng.2025.500174
Almudena Santano Magariño
{"title":"Humanisation and health: More than a need","authors":"Almudena Santano Magariño","doi":"10.1016/j.sedeng.2025.500174","DOIUrl":"10.1016/j.sedeng.2025.500174","url":null,"abstract":"","PeriodicalId":101097,"journal":{"name":"Revista Científica de la Sociedad de Enfermería Neurológica (English ed.)","volume":"61 ","pages":"Article 500174"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143637660","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Quality evaluation and headache management in a patient admitted to the neuroscience area. CALMA study 神经科学区住院患者的质量评价与头痛管理。过早学习
Revista Científica de la Sociedad de Enfermería Neurológica (English ed.) Pub Date : 2025-01-01 Epub Date: 2024-10-22 DOI: 10.1016/j.sedeng.2024.100159
Eulalia Gine-Cipres , Marta Torres Ferrus , Victor J. Gallardo , Alicia Alpuente Ruiz , Edoardo Caronna , Patricia Pozo-Rosich
{"title":"Quality evaluation and headache management in a patient admitted to the neuroscience area. CALMA study","authors":"Eulalia Gine-Cipres ,&nbsp;Marta Torres Ferrus ,&nbsp;Victor J. Gallardo ,&nbsp;Alicia Alpuente Ruiz ,&nbsp;Edoardo Caronna ,&nbsp;Patricia Pozo-Rosich","doi":"10.1016/j.sedeng.2024.100159","DOIUrl":"10.1016/j.sedeng.2024.100159","url":null,"abstract":"<div><h3>Introduction</h3><div>Headache is a very common neurological symptom. It is the first reason for consultation in neurology. About hospitalized patients, we do not have epidemiological data on the global prevalence of headaches in hospitalized patients.</div></div><div><h3>Objective</h3><div>To describe the prevalence of headaches in hospitalized patients, their triggers, and the level of compliance with nursing records.</div></div><div><h3>Methodology</h3><div>This is a descriptive, observational, and cross-sectional study at the Vall d'Hebron University Hospital (HUVH). The data collected were sociodemographic, related to the reason for admission and pain during admission. Statistical analysis was performed with R v4.1.1.</div></div><div><h3>Results</h3><div>Of the 45 admitted patients, 55% (25/45) participated, 55% (25/45) participated, 64% (16/25) were women. 60% (15/25) had presented headaches during admission, of which 73.3% (11/15) occurred in the last 24 hours. The 33.3% (5/15) recognized stress as the most frequent trigger, noise (5/15), and income derivatives (3/15). During the daily follow-up by the nurse, 100% (25/25) of the patients answered that they had been asked about pain in general and 32% (8/25) specifically about headaches. No records were obtained due to the computer program's non-existence of nursing clinical variables.</div></div><div><h3>Conclussion</h3><div>Headache is a symptom that occurs prevalently in hospitalized patients. Stress and noise seem to be triggers of this situation. Certain behaviors on the part of health centers and professionals could help improve the care of these patients.</div></div>","PeriodicalId":101097,"journal":{"name":"Revista Científica de la Sociedad de Enfermería Neurológica (English ed.)","volume":"61 ","pages":"Article 100159"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143637659","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Impact of the implementation of a therapeutic education program for patients with chronic migraine 实施治疗性教育计划对慢性偏头痛患者的影响
Revista Científica de la Sociedad de Enfermería Neurológica (English ed.) Pub Date : 2025-01-01 Epub Date: 2024-10-24 DOI: 10.1016/j.sedeng.2024.100166
Teresa Marco Galindo, Santiago Fernandez Fernandez, Victor Obach Baurier, Neus Fabregat Fabra
{"title":"Impact of the implementation of a therapeutic education program for patients with chronic migraine","authors":"Teresa Marco Galindo,&nbsp;Santiago Fernandez Fernandez,&nbsp;Victor Obach Baurier,&nbsp;Neus Fabregat Fabra","doi":"10.1016/j.sedeng.2024.100166","DOIUrl":"10.1016/j.sedeng.2024.100166","url":null,"abstract":"<div><h3>Objective</h3><div>To analyze the impact of implementing a therapeutic education (TE) program for patients with chronic migraine.</div></div><div><h3>Method</h3><div>Prospective longitudinal intervention and assessment study before and after the program, lasting 6 months, conducted at the Headache and Facial Pain Unit of Hospital Clinic in Barcelona.</div></div><div><h3>Results</h3><div>TE resulted in a significant improvement in the frequency of headache days per month, DCM (15.6 ± 6.84 vs. 11.5 ± 4.68; p &lt; 0.001), migraine days per month, DMM (7.38 ± 1.44 vs. 5.88 ± 1.36; p &lt; 0.001), and increased perception of quality of life, measured through the MSQ scale (65.4 ± 10.11 vs. 51 ± 11.36; p &lt; 0.001). Regarding satisfaction, we can observe that 97.5% of patients who attended group sessions would recommend them to other people with migraines and, furthermore, considered the content to be good or excellent.</div></div><div><h3>Conclusions</h3><div>TE in the treatment of chronic migraine offers a promising improvement in the quality of life of patients by empowering them with knowledge about their condition and pain management strategies. This complements pharmacological treatments by focusing on prevention and self-care. Although more research is needed to establish standard protocols, the presence of advanced practice nurses in headaches is crucial for the successful implementation of these programs.</div></div>","PeriodicalId":101097,"journal":{"name":"Revista Científica de la Sociedad de Enfermería Neurológica (English ed.)","volume":"61 ","pages":"Article 100166"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143637654","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Psycho-emotional care by neurological nurses. Keys to deciphering the enigma of emotional well-being 神经科护士的心理情感护理。破译情绪健康之谜的关键
Revista Científica de la Sociedad de Enfermería Neurológica (English ed.) Pub Date : 2024-07-01 Epub Date: 2024-11-12 DOI: 10.1016/j.sedeng.2024.500171
José Manuel Párraga Sánchez
{"title":"Psycho-emotional care by neurological nurses. Keys to deciphering the enigma of emotional well-being","authors":"José Manuel Párraga Sánchez","doi":"10.1016/j.sedeng.2024.500171","DOIUrl":"10.1016/j.sedeng.2024.500171","url":null,"abstract":"","PeriodicalId":101097,"journal":{"name":"Revista Científica de la Sociedad de Enfermería Neurológica (English ed.)","volume":"60 ","pages":"Article 500171"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142658606","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Functional social support in patients with myasthenia gravis: Narrative review 重症肌无力患者的功能性社会支持:叙述性综述
Revista Científica de la Sociedad de Enfermería Neurológica (English ed.) Pub Date : 2024-07-01 Epub Date: 2024-11-12 DOI: 10.1016/j.sedeng.2024.100155
Mireia Larrosa-Dominguez, Laura Reyes-Martí
{"title":"Functional social support in patients with myasthenia gravis: Narrative review","authors":"Mireia Larrosa-Dominguez,&nbsp;Laura Reyes-Martí","doi":"10.1016/j.sedeng.2024.100155","DOIUrl":"10.1016/j.sedeng.2024.100155","url":null,"abstract":"<div><h3>Introduction</h3><div>Social support promotes feelings of stability, predictability and self-esteem and reduces the social isolation, because information, tangible assistance and emotional support can be obtained from the social network.</div></div><div><h3>Methods</h3><div>We conducted a narrative review of the international empirical literature to provide a comprehensive understanding of the impact of social support and social networks on patients diagnosed with myasthenia gravis. The following databases were consulted: CINAHL, MEDLINE, APA PsycInfo, SCOPUS and Web of Science. Information was collected up to 2nd December 2022.</div></div><div><h3>Results</h3><div>The initial search generated 46 articles, but after the exclusion criteria had been applied, the total number of articles analysed was 13.</div></div><div><h3>Conclusions</h3><div>The symptoms of myasthenia gravis, especially ptosis and slurred speech, can have a major psychosocial impact and a negative effect on interaction social.</div></div>","PeriodicalId":101097,"journal":{"name":"Revista Científica de la Sociedad de Enfermería Neurológica (English ed.)","volume":"60 ","pages":"Article 100155"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142658698","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Presence of palinopsia as a sign of selective CNS tractopathy: A case report 苍白视力是选择性中枢神经系统束病变的一种表现:病例报告
Revista Científica de la Sociedad de Enfermería Neurológica (English ed.) Pub Date : 2024-07-01 Epub Date: 2024-11-12 DOI: 10.1016/j.sedeng.2024.100156
Elnaz Asadollahzadeh , Vahid Shahmaei , Rezvan Hassanpour , Zahra Ebadi , Mohammad Ali Sahraian , Abdorreza Naser Moghadasi
{"title":"Presence of palinopsia as a sign of selective CNS tractopathy: A case report","authors":"Elnaz Asadollahzadeh ,&nbsp;Vahid Shahmaei ,&nbsp;Rezvan Hassanpour ,&nbsp;Zahra Ebadi ,&nbsp;Mohammad Ali Sahraian ,&nbsp;Abdorreza Naser Moghadasi","doi":"10.1016/j.sedeng.2024.100156","DOIUrl":"10.1016/j.sedeng.2024.100156","url":null,"abstract":"<div><div>Palinopsia, described as the persistence of visual images or their recurrence after the stimulus has disappeared, represents a rare but important neuro-ophthalmic complication. Until now, the pathophysiology and the main location of this visual mainteanance condition are not been clearly understood. This study presents a 30-year-old woman with palinopsia who had her selective optic radiation lesion assessed by diffusion tensor imaging (DTI). The finding of magnetic resonance imaging (MRI) did not reveal any damage in the selective optic pathway whereas DTI showed a decreased density of the optic radiation tract. Furthermore, the mean diffusivity (MD), axial diffusivity (AD), and radial diffusivity (RD) were increased in suspected regions of lesions ds, while fractional anisotropy (FA) was decreased. To the authors’ knowledge, this is the first report of a case of palinopsia representing the central nervous system (CNS) tractopathy. Therefore, we encourage further investigation of optic pathway pathology using DTI in complex neurological complications, including palinopsia.</div></div>","PeriodicalId":101097,"journal":{"name":"Revista Científica de la Sociedad de Enfermería Neurológica (English ed.)","volume":"60 ","pages":"Article 100156"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142658605","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Neurological deficit and degree of autonomy of patients with ischemic stroke treated with mechanical thrombectomy. A retrospective study 机械性血栓切除术治疗缺血性脑卒中患者的神经功能缺损和自理能力。回顾性研究
Revista Científica de la Sociedad de Enfermería Neurológica (English ed.) Pub Date : 2024-07-01 Epub Date: 2024-10-10 DOI: 10.1016/j.sedeng.2024.100158
M.Lourdes Bermello López , Emilio Rubén Pego Pérez , Isidoro Rodríguez Pérez
{"title":"Neurological deficit and degree of autonomy of patients with ischemic stroke treated with mechanical thrombectomy. A retrospective study","authors":"M.Lourdes Bermello López ,&nbsp;Emilio Rubén Pego Pérez ,&nbsp;Isidoro Rodríguez Pérez","doi":"10.1016/j.sedeng.2024.100158","DOIUrl":"10.1016/j.sedeng.2024.100158","url":null,"abstract":"<div><h3>Objective</h3><div>To determine the degree of autonomy of patients treated with mechanical thrombectomy; to assess the degree of neurological deficit on admission and 24 h, and the degree of dependency at 3 months after performing the mechanical thrombectomy.</div></div><div><h3>Method</h3><div>Quantitative, observational, and descriptive study, with a sample of 57 patients treated with mechanical thrombectomy in the Autonomous City of Buenos Aires. Neurological deficit was measured with the National Institute of Health Stroke Score upon admission and 24 h after treatment with mechanical thrombectomy, and functional outcome with the modified Rankin scale at three months.</div></div><div><h3>Results</h3><div>The degree of dependency at three months was 2,4 points. The mean neurological deficit score on admission was 12,1 points, and 9,3 points after 24 h. Neurological deficit at 24 h has been found to be predictive of functionality at three months.</div></div><div><h3>Conclusion</h3><div>The mean of the neurological deficit at admission was situated in a moderate neurological deficit. The mean of the neurological deficit at 24 h has been placed in a moderate neurological deficit. The score for the degree of dependency at three months was placed in the mild disability category. A significant correlation has been obtained between the neurological deficit at 24 h and the functional result at three months.</div></div>","PeriodicalId":101097,"journal":{"name":"Revista Científica de la Sociedad de Enfermería Neurológica (English ed.)","volume":"60 ","pages":"Article 100158"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142658603","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
“No SMA can hold”: Nursing care for children with spinal muscular atrophy. Descriptive analysis of two case studies "没有 SMA 撑得住":脊髓性肌肉萎缩症患儿的护理。两个案例研究的描述性分析
Revista Científica de la Sociedad de Enfermería Neurológica (English ed.) Pub Date : 2024-07-01 Epub Date: 2024-11-12 DOI: 10.1016/j.sedeng.2024.100144
Federico Ruta , Paolo Ferrara , Francesca Dal Mas
{"title":"“No SMA can hold”: Nursing care for children with spinal muscular atrophy. Descriptive analysis of two case studies","authors":"Federico Ruta ,&nbsp;Paolo Ferrara ,&nbsp;Francesca Dal Mas","doi":"10.1016/j.sedeng.2024.100144","DOIUrl":"10.1016/j.sedeng.2024.100144","url":null,"abstract":"<div><h3>Background</h3><div>Spinal muscular atrophy (SMA) is one of the most common genetic causes of death in children affecting about one in 10,000 live births, while its prevalence is about 1–2 per 100,000 (live births). Recently, the European Commission (EU) approved a novel gene therapy based on the onasemnogen abeparvovec (Zolgensma) for the treatment of patients with SMA. In addition to drug treatment, it is essential that children with SMA apply self-care methods to maintain their health, monitor their weight and food intake, and use appropriate remedies. Self-care and co-production of health care services are crucial in the modern ecosystem, as they can improve survival and prevent hospitalizations. The aim of this work is to support healthcare professionals who may have to deal with patients affected by this disease.</div></div><div><h3>Methods</h3><div>The article uses two case studies of children with spinal muscular atrophy through the creation of a multi-professional research group composed of health professionals who provide direct care to SMA children. The collection and analysis of the data were carried out by involving different figures who interact with SMA children. Specifically, physicians, nurses, parents, physical therapists, social workers, and teachers were individually interviewed.</div></div><div><h3>Results</h3><div>The study aims to provide suggestions on assessing child self-care, believing it to be a valuable method to gather information on how the child performs daily activities and how much the surrounding environment affects self-care. This paper highlights how self-management behaviors depend on four basic aspects: the person (individual, cognitive, and social perceptions), the patient's family (level of knowledge of pathology, involvement in the management and quality of relationship with the patient), the community (relationships with external social contexts, such as school and other organizations), and the healthcare system (availability of resources and the degree of evolution of healthcare).</div></div><div><h3>Conclusions</h3><div>The experience conducted may be helpful to other health institutions to make the approach to children with SMA as most effective as possible, creating internal workgroups and collaboration with external experts on the subject. Moreover, it provides valuable information on caring for families with children with SMA.</div></div>","PeriodicalId":101097,"journal":{"name":"Revista Científica de la Sociedad de Enfermería Neurológica (English ed.)","volume":"60 ","pages":"Article 100144"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142658604","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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