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. METHODS: A qualitative life history study was conducted with two participants: a 54-year-old man diagnosed with LIS and his 50-year-old wife. Data were collected through interviews and autobiographical documents submitted by the participants and analyzed following Braun and Clarke's method of inductive thematic analysis. RESULTS: Five main themes were identified: (1) how to understand and overcome the new situation; (2) the process of care and rehabilitation; (3) communication; (4) writing as a way of helping oneself and others; and (5) personal autonomy and social participation. CONCLUSION: The participants valued the support of their friends and family in the acceptance stage of the new situation, giving special importance to the communication skills and medical attention received after diagnosis.

Post-COVID-19 Condition: How Sociodemographic Factors, Physical Well-Being and Functionality Influence Quality of Life and Mental Health Symptoms.

BACKGROUND: Long COVID-19 syndrome remains a global public health problem, with more than 145 million people affected with multisystemic symptoms. Addressing the requirements of individuals impacted by a syndrome characterised by a complex and variable clinical presentation is of utmost importance. Identifying the variables that can exert influence and understanding their progression is essential for directing treatment strategies aimed at enhancing both independence and quality of life. Therefore, the aim of this study was to analyse the influence of sociodemographic and clinical variables on existence and their relationship with asthenia, anxiety symptoms and low mood. METHODS: An analytical study secondary to an observational cross-sectional descriptive study. RESULTS: Logistic regression showed significant univariate effects on asthenia [sex (p = 0.034); age (p = 0.042); Activities of Daily Living Questionnaire [ADQL (p = 0.002)] [physical functioning (p < 0.001) and general health (p = 0.014)] and multivariate [sex (p = 0.019), adult age (p = 0.01) and physical functioning (p = 0.04)]]; low mood [time of evolution (p = 0.028) and multivariate [time course (p = 0.007), ADLQ (p = 0.011), role physical (p = 0.013) and general health (p = 0.001)]] and anxiety [physical functioning (p = 0.046) and multivariate [physical functioning (p = 0.034), age (p = 0.011), time of evolution (p = 0.001) and ADQL (p = 0.011)]]. CONCLUSIONS: Increased age, gender and longer evolution time seem to favour the prevalence and occurrence of mental health symptoms; greater independence and good physical functioning are protective factors with respect to the occurrence of mental health-related symptoms in patients affected by post-COVID-19 condition.

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.

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. Participants were randomly allocated to either the experimental group (EG, receiving a combination of conventional therapy and Neuropilates; n = 15) or the control group (CG, receiving solely conventional therapy; n = 15). Once adjusted for baseline FIM scores, the results showed significant differences favoring the EG in daily functioning (FIM), static balance (FRT), right-hand manual dexterity (NHPT) and right-upper limb coordination (BBT). Satisfaction with the received treatment as measured with the CSQ-8 was significantly higher for the EG. In conclusion, the incorporation of Neuropilates, facilitated by a single experienced therapist, can be a valuable complement to conventional physical and occupational therapy. However, Neuropilates-based interventions should be supervised and tailored to each individual by a professional specifically trained in the method.

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. The sample was randomized using the OxMar software program Attribution 4.0 International, facilitating the division into a control group (CG), who received conventional occupational therapy sessions, and an experimental group (EG), who received therapy incorporating the Nintendo Switch, in addition to conventional occupational therapy sessions. The intervention period with the Nintendo Switch lasted for 8 weeks. (3) Results: Thirty-two participants were included in the study. Significant differences were found in the vast majority of the variables analyzed, which shows an improvement following the intervention; these improvements were mainly observed in measures of skill and the perception of quality of life. (4) Conclusions: An eight-week intervention with the Nintendo Switch alongside conventional occupational therapy helps to maintain cognitive status and functional independence. Following 8 weeks of intervention with the Nintendo Switch, improvements in gross motor dexterity, fine motor dexterity, and quality of life were observed in older people with cognitive impairment.

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.