Real-world experience of diagnosis, disability, and daily management in parents of children with different genetic developmental and epileptic encephalopathies: a qualitative study.

Purpose: This study describes the experience of parents of children with developmental and epileptic encephalopathies (DEE) and how the disease impacts their daily lives.

Materials And Methods: A descriptive qualitative study was conducted using purposeful sampling. Twenty-one parents of children with DEEs caused by SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants were included.

Quality-of-Life- and Cognitive-Oriented Rehabilitation Program through NeuronUP in Older People with Alzheimer's Disease: A Randomized Clinical Trial.

(1) Alzheimer's disease (AD) is a progressive neurodegenerative disorder marked by cognitive decline and functional impairment. The NeuronUP platform is a computer program whose main function is cognitive stimulation through three types of activities that change so that the user does not manage to learn it. This program provides opportunities to work on various domains, including activities of daily living (ADLs), social skills, and cognitive functions.

A novel application of lemmatize and thematic analysis to understand protective measures perspectives of patients with chronic respiratory disease during the first outbreak of COVID-19 pandemic: a qualitative study.

Objective: To describe the perspectives of a group of COPD patients during the first outbreak of the COVID-19 pandemic and narrate the emotions and polarity (acceptance-rejection) regarding living with COPD during the pandemic.

Design/methods: We used a novel application of lemmatization and thematic analysis of participants' narratives. A study was carried out with eight patients with moderate-severe-very severe COPD during the first outbreak of COVID-19 using purposive sampling.

Locked-in syndrome: A qualitative study of a life story.

Introduction: Locked-in syndrome (LIS) is characterized by tetraplegia, anarthria, paralysis of cranial nerves, and facial musculature, with the preservation of consciousness and cognitive abilities, as well as vertical eye movements and eyelid movements, hearing, and breathing. Three types of LIS are distinguished: classic, incomplete, and total. The aim of the present study was to describe the life history of a person with LIS, as well as the wife's experience and perspective of this life history.

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.

Effects of Neuropilates on Functional Outcomes in Chronic Stroke: A Randomized Clinical Trial.

Neuropilates is an intervention approach that was developed as a modified version of the Pilates Method to be used for neurological rehabilitation. The main objective of this study was to analyze the effectiveness of regular physiotherapy and occupational therapy rehabilitation in comparison to a combination of traditional rehabilitation with Neuropilates in adults with post-stroke motor disabilities. This was a rater- and analyst-blinded randomized clinical trial with a three-month intervention and a one-month follow up.

The Effectiveness and Usability of a Rehabilitation Program Using the Nintendo Switch to Promote Healthy Aging in Older People with Cognitive Impairment: A Randomized Clinical Trial.

(1) Background: Healthy aging is the process of developing and maintaining functional capacity and optimizing involvement in order to improve one's quality of life as people age. This study aimed to encourage healthy aging in people with cognitive impairment, as well as a control group, via the use of the Nintendo Switch combined with occupational therapy sessions, aiming to improve gross and fine motor skills, functionality, quality of life, and cognitive status. (2) Methods: A randomized clinical trial was undertaken.

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.

Living with and managing seizures among parents of children diagnosed with Phelan-McDermid syndrome: a qualitative study using in-depth interviews.

To describe the experience of parents of children diagnosed with Phelan-McDermid syndrome (PMS) in relation to epileptic seizures and/or convulsions, their daily management and impact on family life. A qualitative descriptive study was conducted. The study included parents of children diagnosed with PMS by a medical specialist.

Health care concerns in parents of children with different genetic developmental and epileptic encephalopathies: A qualitative study.

Aim: To describe the experiences and unmet medical care needs of a group of parents of children with developmental and epileptic encephalopathies (DEEs) caused by the SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants.

Method: A qualitative descriptive study was conducted. Participants were recruited using purposeful sampling.

"Your Life Turns Upside Down": A Qualitative Study of the Experiences of Parents with Children Diagnosed with Phelan-McDermid Syndrome.

(1) Background: Parents of children with rare diseases experience great uncertainty and employ different strategies to care for their children and cope with the disease. The purpose of the present study was to describe the perspective of parents with children with Phelan McDermid Syndrome (PMS). (2) Methods: A non-probabilistic purposeful sampling was used to perform this qualitative descriptive study.

Experiences surrounding the diagnostic process and care among parents of children diagnosed with Phelan-McDermid syndrome: A qualitative study.

Aim: To explore the experience of parents of children diagnosed with Phelan-McDermid syndrome (PMS) with regard to the diagnostic process, treatment, and medical care.

Method: A qualitative descriptive study was conducted. Participants were recruited using non-probabilistic purposeful sampling.

Understanding the Professional Care Experience of Patients with Stroke: A Qualitative Study Using In-Depth Interviews.

Background: Professional support and communication stimulates the professional-patient relationship and supports the recovery of stroke patients.

Objectives: To describe the perspectives of patients with stroke regarding communication, professional support, and their ability to participate in processes and integrated care with health providers.

Methods: A qualitative study was conducted.

Headaches and Dizziness as Disabling, Persistent Symptoms in Patients with Long COVID-A National Multicentre Study.

Background: Currently, about 15% of coronavirus disease-19 (COVID-19) patients are affected by Long COVID worldwide; however, this condition has not yet been sufficiently studied. The aim of this study was to identify the impact of symptom persistence as well as clinical and socio-demographic variables in a cohort of people with Long COVID. Methods: We conducted a descriptive cross-sectional study of a sample of adult patients from different Spanish regions presenting with Long COVID.

Understanding the Non-Surgical Treatment Experience of Female Patients with Carpal Tunnel Syndrome: A Qualitative Study.

Carpal tunnel syndrome (CTS) is a peripheral neuropathy of the upper extremity, characterized by pain, loss of strength, and decreased fine motor function. This study describes the experiences of women with CTS who received non-surgical treatments. A qualitative phenomenological study was undertaken.

Relatives experiences during the COVID-19 pandemic: A qualitative study set in Spanish locked-down nursing homes.

Aim: To describe the experience of relatives of residents with dementia residing in locked-down nursing homes during the first outbreak of the COVID-19 pandemic, concerning their relationships with nurses and the nursing care applied.

Methods: A qualitative descriptive study was carried out and purposive sampling was applied. Participants were first- and second-degree relatives of residents with dementia, who lived permanently in a nursing home and who were admitted prior to the COVID-19 pandemic.

Social and Family Challenges of Having a Child Diagnosed with Phelan-McDermid Syndrome: A Qualitative Study of Parents' Experiences.

(1) Background: Phelan-McDermid Syndrome (PMS) in children causes significant challenges affecting social and family relationships. The purpose of this study was to explore the experience of parents with children diagnosed with PMS regarding interactions with their social environment; (2) Methods: A qualitative descriptive study was conducted. Participants were recruited using non-probabilistic purposeful sampling.

Food Intake Changes and Their Impact on Quality of Life in Spanish Citizens with and without COVID-19 during Lockdown.

The pervasive impact of the COVID-19 pandemic is just beginning to be analyzed. To date, only a handful of these studies have investigated the relationship between an individual’s quality of life (QoL) and their changes in food intake due to the virus (from the associated symptomatology of diagnosis to the universal impact of lockdown on individual lives, regardless of a person’s health status). Therefore, the purpose of this study is to identify changes in food intake resulting from the pandemic and the corresponding impact on QoL in the Spanish population.

Person-centred care in individuals with stroke: a qualitative study using in-depth interviews.

Background: Person-centred care (PCC) has considerable effects on the clinical practice of health professionals. The purpose of this study was to describe the perspectives and perceived barriers and enablers of individuals with stroke regarding the PCC model in stroke rehabilitation.

Methods: A qualitative exploratory study was conducted based on an interpretive framework.

Effects of Social Isolation Measures Caused by the COVID-19 Pandemic on Occupational Balance, Participation, and Activities' Satisfaction in the Spanish Population.

The COVID-19 pandemic caused a lot of social and health chaos. Our main aim in this study was to examine the impact of the COVID-19 pandemic on occupational balance in the Spanish population, one year post the beginning of the pandemic compared with the pre-pandemic period. Data were collected among the Spanish population over 18 years of age by the Occupational Balance Questionnaire online survey; questions about satisfaction and performance of activities, and on the modification of routine and habits were asked.

Volunteering as a Meaningful Occupation in the Process of Recovery From Serious Mental Illness: A Qualitative Study.

Importance: Volunteering is an activity that facilitates social welfare, a sense of connection to others, and the construction of links with other people and the community.

Objective: To describe the experience of a group of people with serious mental illness (SMI) who engaged in community volunteer work.

Design: Qualitative, phenomenological study using purposeful sampling and an inductive thematic analysis.

Effects of COVID-19 home confinement on sleep in children: A systematic review.

Our main aim was to examine the evidence of the effects of coronavirus disease confinement on the sleep of children aged 12 years and younger. A systematic review was conducted following the recommendations for Preferred Reporting Items for Systematic Reviews and Meta-Analyses. MEDLINE, Cumulative Index for Nursing and Allied Health Literature, Excerpta Medica Database, Psychological Information Database, and Web Of Science were systematically searched between the period of January 2020 and March 2021.

Mental Practice and Manipulative Skills Training Among People With Multiple Sclerosis: A Pilot Study.

Importance: Multiple sclerosis (MS) is a demyelinating disease of the central nervous system that produces both motor and cognitive dysfunctions. Impairments in limb function as a result of MS cause a decline in the performance of activities of daily living (ADLs).

Objective: To determine whether the use of mental practice (MP) or MP combined with training in motor manipulation skills (skills training) would improve gross and fine motor skills and treatment satisfaction among people with MS.