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.

"More than effort, it's dedicating time and perseverance." experiences of physical activity and physical exercise in stroke survivor with high functional capacity: a qualitative study.

Background: Stroke survivors exhibit sedentary behavior, and many do not engage in physical activity and exercise for a number of reasons. Secondary prevention through physical activity is a priority to avoid a new stroke or disease.

Objective: To describe the experience of stroke survivors with maintained walking ability living in Spain regarding physical activity and exercise.

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.

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.

Real-world experience of OnabotulinumtoxinA treatment in female patients with chronic migraine: a qualitative study using in-depth interviews.

Background: Chronic migraine (CM) causes great disability and affects an individual's quality of life. OnabotulinumtoxinA (OBT-A, Botox®) was the first prophylactic treatment specifically indicated for CM. The aim of this study was to describe the experiences of women with CM treated with OBT-A.

Carpal tunnel syndrome in the workplace. Triggers, coping strategies, and economic impact: A qualitative study from the perspective of women manual workers.

Background: Carpal tunnel syndrome (CTS) may lead to significant work limitations, especially in female manual workers. There is scarce evidence on the perspective of female manual workers with CTS.

Purpose: To explore the perspective of female workers who suffer from CTS regarding triggers, coping strategies, and economic impact.

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.

Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study.

Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents.

Methods: A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital.

Clinical and Functional Characteristics of a New Phenotype of SMA Type I among a National Sample of Spanish Children: A Cross-Sectional Study.

Spinal Muscular Atrophy (SMA) type I has classically presented extremely severe clinical features. New pharmacological treatments have led to a new phenotype of SMA. The aim of this study was to describe the current health and functional status of children with SMA.

The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team.

The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team. A qualitative case study was conducted, comprising 18 participants.

Multidimensional analysis of sedentary behaviour and participation in Spanish stroke survivors (Part&Sed-Stroke): a protocol for a longitudinal multicentre study.

Introduction: Stroke survivors usually experience long-lasting functional, emotional and social consequences that might contribute to sedentary behaviour and participation restrictions, which are important targets to address during rehabilitation. However, the trajectory and inter-relationship between these factors are unknown.

Methods And Analysis: Part&Sed is a research project based on an observational study design with 6 and 12 months of follow-ups in stroke survivors.

"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.

Emotional Impact and Perception of Support in Nursing Home Residents during the COVID-19 Lockdown: A Qualitative Study.

Unlabelled: Social isolation measures implemented in nursing homes during the COVID-19 pandemic generated occupational imbalance, discomfort, and mental health impairment in residents. We aimed to analyze the lived experience of elderly nursing home residents during the lockdown and social contact restrictions resulting from the COVID-19 pandemic.

Methods: Exploratory qualitative study.

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.

The impact of digital physical therapy during COVID-19 lockdown in children with developmental disorders: A qualitative study.

Background: Digital physical therapy was performed within early intervention sessions for children with developmental disorders during the COVID-19 pandemic. There is no known qualitative study that addresses the perspectives of parents with digital practice for early intervention.

Objective: To describe the parents' experiences with digital physical therapy for early intervention in children during COVID-19 lockdown.

Facing symptoms and limitations: A qualitative study of women with carpal tunnel syndrome.

Background: Carpal tunnel syndrome (CTS) is a neuropathic pain condition characterised by pain, paresthesia, loss of strength and disability.

Objective: To explore the experiences of women with CTS regarding the management of symptoms and limitations.

Methods: A qualitative phenomenological study was conducted.

Multisensory stimulation to promote feeding and psychomotor development in preterm infants: A systematic review.

Background: Sensory stimulation is an intervention that, through peripheral stimuli, can facilitate brain organization, due to neuronal plasticity and cortical reorganization. The objective of this study was to evaluate the evidence about the effects of a multisensory stimulation program, applied on preterm infants, compared to any intervention or standard care, to improve feeding behaviour, and psychomotor development.

Methods: The data sources included Medline (pubmed, EBSCO), Scopus and Web Of Science.

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.

Aquatic Therapy for Persons with Neuromuscular Diseases - A Scoping Review.

Background: Aquatic exercise is among the most common physical activity modalities performed by people with disabilities.

Objective: The present paper reviews currently-available research on aquatic therapy (AT) for persons with neuromuscular diseases (NMD).

Methods: A scoping review of the existing literature was conducted on PubMed, Embase, Medline, Scopus, Web of Science, SPORTdiscus, CINAHL and Lilacs from the earliest date available until October 2020.

Spiritual Care in Advanced Dementia from the Perspective of Health Providers: A Qualitative Systematic Review.

Background: Worldwide, 47 million people suffer from dementia. Despite recognizing the importance of spirituality within dementia care, it is still unclear how this should be integrated into dementia services.

Aim: To explore the perspective of health professionals regarding the spiritual care of people with advanced dementia.

The Meaning of Volunteering among People with Severe Mental Disorders: A Phenomenological Qualitative Study.

This study aimed to describe the perspectives of people with severe mental disorders who volunteer regarding the relationship between volunteering and work, from the framework of personal recovery. A qualitative phenomenological study was undertaken. Purposive sampling was conducted on people with severe mental disorders who participated in volunteering.

The Perspective of Physical Education Teachers in Spain Regarding Barriers to the Practice of Physical Activity among Immigrant Children and Adolescents: A Qualitative Study.

Physical activity (PA) contributes to the development of children and adolescents and to their mental and physical health. The practice of PA in the school context can contribute towards generating a more inclusive educational community for immigrant children and adolescents. The aim of this study was to describe the perspectives of Spanish physical education (PE) teachers on the practice of PA among immigrant children and adolescents.

Effects of Aquatic Therapy for Children with Autism Spectrum Disorder on Social Competence and Quality of Life: A Mixed Methods Study.

Autism Spectrum Disorder (ASD) is a constellation of social deficits and repetitive sensory-motor behaviours. Aquatic therapy (AT) may be effective in improving the social interactions and behaviours in children with ASD. The objective of this study was to evaluate the effects of an AT program on social competence and quality of life and to understand participant's experiences related to the intervention by obtaining qualitative data.

The Meaning of Physical Activity: A Qualitative Study on the Perspective of South American Immigrant Parents.

Physical activity facilitates the acquisition of healthy habits from childhood to adulthood. There are differences in the practice of physical activity between immigrant children and native Spanish children. The aim was to describe physical activity in children, from the perspective of South American immigrant parents.