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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. The inclusion criteria consisted of parents of children with DEEs caused by the SCN1A, KCNQ2, CDKL5, PCDH19, or GNAO1 variants, aged between 4 and 10 years old. In total, 21 parents were included. Data were acquired via researcher field notes and in-depth interviews. A thematic analysis was performed. RESULTS: Three main themes were identified: (1) managing symptoms: epileptic seizures are experienced with great uncertainty and are accompanied by cognitive, behavioural, and motor symptoms; (2) accepting treatment: the ideal medication regimen is a challenge and the decision to withdraw or start a new therapy falls on the parents; and (3) therapeutic relationship and medical care: behaviours related to the health professional can hinder the therapeutic relationship with the parents. Parents are apprehensive about going to the emergency department. INTERPRETATION: Professionals in emergency departments should acquire better knowledge of DEEs, welcome parents, and improve treatment for the children. The results of this study can serve as a starting point for a roadmap of relevant caregiver-reported outcomes in DEEs, to be implemented with new clinical trials and aetiology-targeted therapies. WHAT THIS PAPER ADDS: Epileptic seizures are the symptom that is most experienced and feared by parents. The medication regime has no defined protocol and the decision to withdraw a medication is frequently left to parents.
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Epilepsia , Niño , Humanos , Preescolar , Epilepsia/genética , Epilepsia/terapia , Convulsiones/genética , Atención a la Salud , Padres/psicología , Protocadherinas , Subunidades alfa de la Proteína de Unión al GTP Gi-GoRESUMEN
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. Purposive sampling was used, and data were collected via in-depth interviews. A thematic analysis was performed on the data. This study was conducted according to the Standards for Reporting Qualitative Research. Thirty-two parents were recruited. Four themes were identified: (a) the first epileptic seizure, where the first seizure appears abruptly and unexpectedly; (b) living with seizures, seizures generate high concern about the evolution of the disease and the future of children with PMS; (c) treatment of epileptic seizures, obtaining an adequate treatment is a long process that involves decision making by parents; (d) the impact of epilepsy on the family, where there is a change in the functioning and relationships among family members. Conclusions: It is necessary to develop programs where parents can discuss treatment decisions with professionals and provide coping strategies for the management of epilepsy and seizures. What is Known: ⢠Children with Phelan-McDermid syndrome may develop epilepsy. Parents receive insufficient information for the management and control of seizures. ⢠Parents describe concerns about the evolution of epilepsy in their children's adulthood, along with the impact of seizures and/or convulsions on their children. What is New: ⢠Epilepsy and seizures force the entire family to adapt their lifestyle and give up activities that can trigger seizures. ⢠Parents pointed out the need to create programs to inform about the benefits and disadvantages of pharmacological treatments in order to improve decision making.
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Trastornos de los Cromosomas , Epilepsia , Niño , Humanos , Adulto , Trastornos de los Cromosomas/genética , Deleción Cromosómica , Padres , Convulsiones/diagnóstico , Convulsiones/etiología , Convulsiones/terapia , Epilepsia/diagnóstico , Investigación Cualitativa , Cromosomas Humanos Par 22RESUMEN
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.
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Padres , Investigación Cualitativa , Humanos , Masculino , Femenino , Niño , Preescolar , Adulto , Padres/psicología , Adolescente , Persona de Mediana Edad , Lactante , Costo de Enfermedad , Síndromes Epilépticos/psicología , Síndromes Epilépticos/genética , Espasmos Infantiles/psicologíaRESUMEN
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. In total, 32 parents with children with PMS were included. In-depth interviews and researcher field notes were used. An inductive thematic analysis was performed. RESULTS: Five themes were identified: (1) the 'diagnostic process' describes the diagnostic process and how it is communicated to the parents; (2) 'treatment and expectations' describes the expectations and hopes placed on future treatment; (3) 'family planning' describes how parents deal with genetic counselling when planning to have more children after a diagnosis of PMS; (4) 'the world of disability' describes the entry of parents into an environment of dependency and disability after the diagnosis; (5) 'family's financial situation' highlights the financial difficulties due to the high cost of therapies and daily care products. INTERPRETATION: Our results provide insight on how a diagnosis of PMS and its consequences are experienced by parents of children with PMS. These results can be used by health professionals to help and support parents.
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Trastornos de los Cromosomas , Niño , Humanos , Trastornos de los Cromosomas/diagnóstico , Trastornos de los Cromosomas/terapia , Trastornos de los Cromosomas/genética , Deleción Cromosómica , Padres , Investigación CualitativaRESUMEN
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. SETTING: Several mental health community centers in Madrid and Catalonia, Spain. PARTICIPANTS: People with SMI engaged in community volunteer work. Outcomes and Measures: In-depth interviews were used to collect data. RESULTS: Two themes, with four subthemes each, emerged from the data: (1) engaging in a meaningful occupation enhances the recovery process (subthemes: undergoing positive experiences, performing or resuming a meaningful occupation, living in the present moment, and relating with one's social and family environment) and (2) a process of mutual support (subthemes: in helping others, you help yourself; helping others on the basis of one's first-person experience; recover before you can help others; and role of professionals in volunteering). CONCLUSIONS AND RELEVANCE: Volunteering is perceived as a meaningful occupation. Helping others generates a reciprocal benefit that favors the recovery process and contributes to the establishment of personal and social bonds. What This Article Adds: This study provides a basis for understanding the potential of volunteering to be a meaningful occupation in the recovery process of people with SMI. It can help occupational therapy practitioners develop volunteer-based intervention programs that support the recovery process.
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Trastornos Mentales , Terapia Ocupacional , Humanos , Trastornos Mentales/psicología , Terapia Ocupacional/psicología , Ocupaciones , Investigación Cualitativa , Voluntarios/psicologíaRESUMEN
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. DESIGN: Pilot study with a duration of 3 mo plus 3-mo follow-up. SETTING: Two MS associations. PARTICIPANTS: Thirty-five patients diagnosed with MS of the relapsing-remitting and progressive secondary subtypes, ages 25 to 60 yr. INTERVENTION: The participants were allocated to one of three groups according to their order of inclusion in the study: (1) MP, (2) MP + skills training, or (3) control group. The treatment protocol had a 6-wk duration and a total of 12 sessions. Outcomes and Measures: Blinded evaluators performed three assessments for each patient (pretreatment, posttreatment, and 3-mo follow-up) using the Nine-Hole Peg Test, Box and Block Test, ABILHAND, and Canadian Occupational Performance Measure (COPM). RESULTS: We found no evidence of benefits in self-perceived performance of ADLs with respect to gross and fine motor skills; however, there was an improvement in perceived satisfaction and in the performance of activities, independent of the treatment received. CONCLUSIONS AND RELEVANCE: Perceived ADL performance and satisfaction with performance increases among people with MS when they receive MP, MP + skills training, and conventional rehabilitation treatment. What This Article Adds: Mental practice combined with conventional treatment could contribute to patients perceiving improved performance of ADLs. Self-reported outcome measures, such as the COPM, could provide highly valuable information about occupation performance that may not match the objective evidence.
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Actividades Cotidianas , Esclerosis Múltiple , Adulto , Canadá , Humanos , Persona de Mediana Edad , Destreza Motora/fisiología , Esclerosis Múltiple/complicaciones , Proyectos PilotoRESUMEN
OBJETIVO: Describir las experiencias y las necesidades de atención médica de un grupo de progenitores de niños con encefalopatías epilépticas y del desarrollo (EED) causadas por las variantes SCN1A, KCNQ2, CDKL5, PCDH19 y GNAO1. MÉTODO: Se realizó un estudio cualitativo descriptivo. Los participantes fueron reclutados mediante un muestreo intencional. Los criterios de inclusión consistieron en progenitores de niños con EED causadas por las variantes SCN1A, KCNQ2, CDKL5, PCDH19 o GNAO1, con edades comprendidas entre los 4 y los 10 años. En total, se incluyeron 21 progenitores. Los datos se obtuvieron mediante entrevistas en profundidad y notas de campo del investigador. Se realizó un análisis temático. RESULTADOS: Se identificaron tres temas principales: (1) Manejando los síntomas, las crisis epilépticas se viven con gran incertidumbre, y se acompañan de síntomas cognitivos, conductuales y motores que limitan la vida del niño; b) Aceptando el tratamiento, la pauta de la medicación idónea es un reto, la decisión de retirar o comenzar una nueva terapia recae en los progenitores; y c) Relación terapéutica y atención médica, existen comportamientos y acciones del profesional que facilitan o dificultan la relación terapéutica con los progenitores. Acudir al servicio de urgencias es vivido con recelo por los progenitores. INTERPRETACIÓN: Los profesionales de los servicios de urgencias deben conocer mejor las EED, acoger a los progenitores y mejorar el tratamiento de los niños. Los resultados de este estudio pueden servir como punto de partida para una hoja de ruta de los resultados relevantes reportados por los cuidadores de las EED, a implementar nuevos ensayos clínicos y terapias dirigidas a la etiología. QUÉ AÑADE ESTE DOCUMENTO: Las crisis epilépticas son el síntomas más experimentado y temido por los progenitores en las EED. La pauta de la medicación no tiene un protocolo definido y la decisión de retirar una medicación recae en las manos de los progenitores.
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Estudios Retrospectivos , HumanosRESUMEN
OBJETIVO: El Síndrome de Phelan-McDermid (SPMD) es una enfermedad rara, infradiagnosticada y sin cura. El propósito de este estudio fue explorar la experiencia de los progenitores con niños diagnosticados con el Síndrome de Phelan-McDermid, en relación con el proceso de diagnóstico, el tratamiento y la atención médica. MÉTODO: Se realizó un estudio cualitativo descriptivo. Los participantes fueron reclutados mediante un muestreo intencional no probabilístico. En total, se incluyeron 32 progenitores con hijos con SPMD. Se utilizaron entrevistas en profundidad y notas de campo de los investigadores. Se realizó un análisis temático inductivo. RESULTADOS: Se identificaron cinco temas: "El proceso diagnóstico", se describe el proceso diagnóstico y la forma de comunicarlo a los progenitores; "El tratamiento y sus expectativas" describe las expectativas y esperanzas construidas sobre un futuro tratamiento; "Planificación familiar", describe como los progenitores se enfrentan al consejo genético, para la planificación de tener más hijos tras el diagnóstico de SPMD; "El mundo de la discapacidad", describe la entrada de los progenitores en el entorno de la dependencia y discapacidad tras el diagnóstico; "La economía familiar", muestra las dificultades económicas debido al elevado coste de las terapias y los productos del cuidado diario. INTERPRETACIÓN: Nuestros resultados proporcionan una visión de cómo el diagnóstico y sus consecuencias son experimentados por los progenitores con niños con SPMD. Estos resultados pueden ser utilizados por los profesionales de la salud para ayudar y apoyar a los progenitores.
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Complicaciones Posoperatorias , Humanos , Estudios RetrospectivosRESUMEN
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.
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Síndrome de Enclaustramiento , Investigación Cualitativa , Humanos , Masculino , Persona de Mediana Edad , Síndrome de Enclaustramiento/fisiopatología , Femenino , Comunicación , Esposos/psicología , Autonomía Personal , Participación Social , Escritura , Cuadriplejía/psicología , Cuadriplejía/fisiopatologíaRESUMEN
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.
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(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.
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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.
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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.
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Ejercicios Respiratorios , COVID-19 , Investigación Cualitativa , SARS-CoV-2 , Telerrehabilitación , Humanos , COVID-19/rehabilitación , Masculino , Femenino , Persona de Mediana Edad , Ejercicios Respiratorios/métodos , Adulto , Anciano , Síndrome Post Agudo de COVID-19 , Fatiga/rehabilitación , Disnea/rehabilitaciónRESUMEN
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. Sixteen participants, of which 10 were women (mean age 57.1 years), participated in the study. Data were collected through in-depth interviews and reflective notes, using a digital platform. An inductive thematic analysis was carried out. This study was approved by the University Research Ethics Committee and followed the COREQ guidelines. The Guba and Lincoln criteria (credibility, transferability, dependability, and confirmability) were applied for quality control. RESULTS: Families' relationships with nurses before the first wave relied on closeness and involvement in care. Families had difficulty maintaining a close relationship with nurses due to turnover and lack of time. The nursing care applied in the first wave resulted in limited family access to the nursing home, limited contact time with residents, and limited close physical contact. CONCLUSIONS: The first outbreak has affected the relationships among relatives and nurses in nursing homes. Changes should be made in the organization of care within nursing homes in order to adapt to restrictions due to the pandemic.
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COVID-19 , Demencia , Humanos , Femenino , Persona de Mediana Edad , Masculino , Pandemias , COVID-19/epidemiología , Casas de Salud , Familia , Investigación CualitativaRESUMEN
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. Data collection was conducted between April and July 2021. Functional status and dependency were assessed. Results: A multivariate linear regression was performed, and the model was statistically significant (F (7; 114) = 8.79; p < 0.001), according to the overall ALDQ score. The variables with a statistically significant effect on the degree of dependence were age (p = 0.014), time since diagnosis (p = 0.02), headaches (p = 0.031), and dizziness (p = 0.039). Functional status post-COVID showed a positive and significant relationship with the percentage of dependence (p < 0.001). Conclusions: People affected by Long COVID showed moderate dependency status and limitations in functionality. Those with neurological symptoms, such as dizziness and headaches, as well as older age, showed a higher degree of dependency. Improvements in dependency status occurred with increasing time since diagnosis.
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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. Purposive sampling was used. Women with clinical and electromyographic diagnoses of CTS were included. Eighteen in-depth interviews were conducted among women with CTS, and field notes were kept. The Giorgi's approach was used for qualitative analysis of the data collected. Five themes emerged: (a) Seeking help and waiting for a diagnosis, (b) trying non-surgical therapeutic options, (c) avoiding invasive options, (d) treatment expectations, and (e) relationships with clinicians. The women described how diagnoses were delayed because women delay seeking help and referrals to medical specialists. Women avoid surgical options and prefer to opt for more conservative approaches, such as splinting or physical therapy. The main reason for avoiding surgical treatment is the fear of limitations and that surgery will not fully eliminate the symptoms. Conflicts may arise in the relationship with the clinician, and they demand to be able to participate in the decision-making process.
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Síndrome del Túnel Carpiano , Síndrome del Túnel Carpiano/terapia , Femenino , Humanos , Dolor/etiologíaRESUMEN
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. This study focuses its investigation on the 3-month time period within which lockdown was its most restrictive, March−May 2020. Survey questions ask participants to compare their eating habits, general health status, and QoL during these 3 months to times prior to the pandemic. We conducted an online survey amongst the Spanish population over 18 years old. Three surveys were administered: (1) the adult eating behavior questionnaire (EABQ), (2) EuroQoL-5D-5L, and (3) The determinants lifestyle changes during lockdown period (March to May 2020). A total of 86 participants were included, with a mean age of 34 years. In the analysis of QoL, significant differences were found according to age, sex, and the presence of a COVID-19 diagnosis. Likewise, in the analysis of food intake, significant differences were found by age (greater changes in the 18−29-years-old population) (p< 0.01) and by sex (women p < 0.03), as well as greater changes in those with a diagnosis of COVID-19. Furthermore, both food intake and COVID-19 diagnosis were variables that predicted QoL outcomes. In sum, forced home lockdown can cause changes in food intake, which can predict a lower QoL. It follows that the lockdown situation caused by the worldwide COVID-19 pandemic has affected the food intake and overall QoL of the Spanish population.
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(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. In total, 32 parents of children with PMS were included. In-depth interviews and researchers' field notes were used to collect the data. An inductive thematic analysis was performed; (3) Results: Five themes were identified: (a) challenges in the relationship as a couple; (b) challenges within the family and close social relationships; (c) challenges in the educational-school environment; (d) challenges in the health environment and with health professionals, and (e) reconnection through the PMS association. It would be beneficial for parents to create training programs on PMS in the educational and healthcare settings, to promote the participation of professionals in the PMS association and to develop care programs focusing in their physical, psychological and social health.
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Trastornos de los Cromosomas , Niño , Deleción Cromosómica , Trastornos de los Cromosomas/genética , Cromosomas Humanos Par 22 , Familia , Humanos , Investigación CualitativaRESUMEN
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. A total of 300 participants were included; 55.3% were female, with a mean age of 41.39 years. Significantly greater occupational imbalance was found in 1-year-post-confinement period of pandemic, as well as an increase in the difficulty of performance and a decrease in satisfaction with it. A greater number of the sample had modified their routines (p < 0.01), lost habits (p < 0.01), and did not resume habits (p < 0.01). In the analysis by age groups, differences were found in the variables related to habits and occupational balance. The social restriction measures negatively impacted occupational balance in the Spanish population. There was a decrease in occupational participation, increased difficulty in performance, decreased satisfaction in occupational performance, and modification of habits and routines.
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COVID-19 , Pandemias , Adolescente , Adulto , COVID-19/epidemiología , Femenino , Humanos , Masculino , Satisfacción Personal , SARS-CoV-2 , Aislamiento SocialRESUMEN
(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. Thirty-two parents with children with PMS were interviewed. In-depth interviews and research field notes were analyzed using an inductive thematic analysis. (3) Results: Four themes emerged from the data. "Understanding and accepting the disease" described how parents experienced their child's diagnosis and the lack of information. The second theme, called "Living day by day", highlighted the daily difficulties faced when caring for a child with PMS. The third theme, "Expectations versus reality", was based on the parents' expectations of parenthood and the reality they face. Expectations for the future are also included. Finally, "Pain and happiness" describes how parents alternate feelings of distress and suffering but also joy with what they learn from these experiences. (4) Conclusions: Health professionals can use these results to support parents.