The impact of developmental and epileptic encephalopathies on families: a qualitative study.

Developmental and epileptic encephalopathies (DEEs) cause disability and dependence affecting both children and the family. The aim of the study was to describe the perspective of parents of children with DEEs regarding the impact of the disease on the family. We carried out a qualitative study based on the interpretivist paradigm. Twenty-one participants were selected using purposive sampling. Parents of children with DEEs of SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants were included. In-depth interviews and researcher notes were used for data collection. A thematic analysis was performed on the data. Three themes were identified in the results: (a) Assuming conflicts and changes within the couple, causing them to distance themselves, reducing their time and intimacy and leading them to reconsider having more children; (b) impact of the disorder on siblings and grandparents, where siblings perceived DEE as a burden in their lives, felt neglected, and needed to grow and mature alone; conversely, the grandparents suffered for their grandchildren and the parents, in addition to perceiving that their health worsened, and (c) reconciling the care of the child with family life and work; this led the parents to share tasks, abandon or reduce working hours and ask for help.Conclusions: Caring for a child with DEE can result in neglect of social, psychological, emotional, recreational, educational, or occupational needs and obligations that ultimately impact all family members. What is Known: • Children with DEE may develop seizures and experience developmental and cognitive problems. • Caring for a child with DEE has a social and psychological impact on the entire family.

Supervised Telerehabilitation and Home-Based Respiratory Muscle Training for Post-COVID-19 Condition Symptoms: A Nested Qualitative Study Exploring the Perspectives of Participants in a Randomized Controlled Trial.

OBJECTIVE: The purpose of this study was to describe the experiences of individuals with post-coronavirus 19 (COVID-19) condition symptoms who underwent a supervised telerehabilitation and home-based respiratory muscle training (TSHB-RMT) program. METHODS: A qualitative descriptive study was conducted. Participants were recruited using purposeful sampling. The inclusion criteria consisted of: patients aged over 18 years who presented persistent COVID-19 symptoms of fatigue and dyspnea for at least 3 months after the COVID-19 diagnosis. In total, 28 patients were included. In-depth interviews and researcher field notes were used to collect the data. A thematic analysis was performed. RESULTS: Three themes reflect the patients' perspective on the TSHB-RMT before the program (reasons for participating), during the treatment program, and upon completion of the study. Among the reasons for participation, participants highlighted the absence of improvement and treatment, and feeling abandoned and forgotten by the health system. The treatment required discipline on behalf of the patients. Mondays and Tuesdays were the most difficult days for performing the therapy, and the physical therapist was perceived as a tool for adherence, change, and a source of validated information. The patients perceived positive effects quite soon; however, it was necessary to extend the follow-up after completing the program because they abandoned the program due to the lack of guidance for exercise supervision. CONCLUSION: This study described relevant aspects that physical therapist professionals should consider when providing TSHB-RMT treatment. IMPACT: TSHB-RMT requires discipline, perseverance, effort, and a commitment to the group. The physical therapist is perceived as the tool that facilitates adherence and participation. The effects are rapidly perceived, leading to improved self-confidence and autonomy; however, it is necessary to increase the follow-up time.

Efectos de la inmersión vertical en el agua sobre el sistema nervioso: revisión sistemática / Effects of vertical water immersion on the nervous system: a systematic review

Introducción. La inmersión vertical induce una variedad de respuestas fisiológicas en diferentes sistemas corporales, dependiendo de las propiedades de la mecánica de fluidos, las cuales son la base que sustenta los programas de terapia acuática en diferentes patologías. Objetivo. Realizar una revisión sistemática para analizar y describir los efectos que la inmersión vertical produce en el sistema nervioso en sujetos sanos. Sujetos y métodos. Se llevó a cabo una búsqueda sistemática de la bibliografía existente en las bases de datos BRAIN, PubMed, PEDro y Web of Science. Se evaluó metodológicamente la calidad mediante la guía CASPe y el nivel de evidencia se categorizó mediante la escala Oxford. Se incluyó un total de 12 artículos, con un rango de puntuación de 7-10 según CASPe, niveles de evidencia 1b-2b y grado de recomendación B. Resultados. Todos los estudios mostraron resultados positivos a las diferentes formas de exposición de la inmersión vertical en el agua y a la suma de estímulos empleados, sin referir efectos adversos en ningún caso. Conclusiones. La inmersión vertical en el agua genera efectos positivos sobre los flujos circulatorios cerebrales, la activación cortical, las funciones ejecutivas y la producción de neurotrofinas en sujetos sanos

Introduction. Vertical immersion induces a variety of physiological responses in different body systems, depending on the properties of fluid mechanics, which are the basis that underpins aquatic therapy programs in different pathologies. Aim. To perform a systematic review to analyze and describe the effects that vertical immersion produces on the nervous system in healthy subjects. Subjects and methods. A systematic search of the existing literature was conducted in the databases BRAIN, PubMed, PEDro and Web of Science. Quality was methodologically assessed using the CASPe guideline and the level of evidence was categorized using the Oxford scale. A total of 12 articles were included, with a score range of 7-10 according to CASPe, levels of evidence 1b-2b and grade of recommendation B. Results. All studies showed positive results to the different forms of exposure of vertical immersion in water and the summation of the stimuli used; no adverse effects were reported in any case. Conclusions. The vertical immersion in the water generates positive effects on cerebral blood flows, cortical activation, executive functions and the production of neurotrophins in healthy subjects