RESUMO
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.
Assuntos
Síndrome do Encarceramento , Pesquisa Qualitativa , Humanos , Masculino , Pessoa de Meia-Idade , Síndrome do Encarceramento/fisiopatologia , Feminino , Comunicação , Cônjuges/psicologia , Autonomia Pessoal , Participação Social , Redação , Quadriplegia/psicologia , Quadriplegia/fisiopatologiaRESUMO
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.
RESUMO
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.
Assuntos
Pais , Pesquisa Qualitativa , Humanos , Masculino , Feminino , Criança , Pré-Escolar , Adulto , Pais/psicologia , Adolescente , Pessoa de Meia-Idade , Lactente , Efeitos Psicossociais da Doença , Síndromes Epilépticas/psicologia , Síndromes Epilépticas/genética , Espasmos Infantis/psicologiaRESUMO
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.
RESUMO
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.
Assuntos
Exercícios Respiratórios , COVID-19 , Pesquisa Qualitativa , SARS-CoV-2 , Telerreabilitação , Humanos , COVID-19/reabilitação , Masculino , Feminino , Pessoa de Meia-Idade , Exercícios Respiratórios/métodos , Adulto , Idoso , Síndrome de COVID-19 Pós-Aguda , Fadiga/reabilitação , Dispneia/reabilitaçãoRESUMO
(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.
RESUMO
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.
Assuntos
Estudos Retrospectivos , HumanosRESUMO
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.
Assuntos
Transtornos Cromossômicos , Epilepsia , Criança , Humanos , Adulto , Transtornos Cromossômicos/genética , Deleção Cromossômica , Pais , Convulsões/diagnóstico , Convulsões/etiologia , Convulsões/terapia , Epilepsia/diagnóstico , Pesquisa Qualitativa , Cromossomos Humanos Par 22RESUMO
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.
Assuntos
Epilepsia , Criança , Humanos , Pré-Escolar , Epilepsia/genética , Epilepsia/terapia , Convulsões/genética , Atenção à Saúde , Pais/psicologia , Protocaderinas , Subunidades alfa Gi-Go de Proteínas de Ligação ao GTPRESUMO
OBJECTIVE: The aim of this study is to understand the image, perception, and beliefs regarding the role of the physiotherapist in the field of mental health physiotherapy, both among the professional community and other multidisciplinary teams. METHODS: An observational phenomenological qualitative study through the administration of an ad hoc survey comprising both categorical and open-ended as well as quantitative questions was conducted. RESULTS: A total of 368 responses were analysed. The participants comprised 78.4% women with a mean age of 37.5, an average professional experience of 14.33 years, and 88.3% practicing physical therapists. From the qualitative analysis conducted, three categories emerged in relation to the obtained responses: (a) functions with codes of "improving quality of life" and "intervening in physical pathologies"; (b) objectives with codes of "Improving quality of life", "Intervening in physical pathologies", "Functional rehabilitation", "Health promotion", and "Intervening in mental disorders"; and (c) image with codes "unfamiliarity", "holistic vision", "necessity", and "importance". Regarding the tools, the findings highlight a strong focus on physical exercise interventions due to their well-established benefits. Cognitive strategies like therapeutic relationships and cognitive-behavioural techniques were also prominent. Additionally, embodiment techniques involving movement, relaxation, breathing, and voice usage were notable. Lastly, manual therapy and physical agents formed another distinct category. CONCLUSIONS: The vision and role of this professional profile were unknown to the respondents. Despite being perceived as having a holistic view of the patient and being considered an essential need, the actual image remains vague. However, there is significant interest, indicating a promising future, although the lack of specialized training is noted. Therefore, the need for specialized education and awareness campaigns among professionals in the mental health field is highlighted.
RESUMO
BACKGROUND: This systematic review and meta-analysis aimed to evaluate the effectiveness of aquatic therapy on pain, sleep quality, psychological symptoms, quality of life, and health status in people diagnosed with fibromyalgia. METHODS: We searched PubMed, CINAHL, The Cochrane Library, PEDro and Scopus databases. Articles were eligible if they were randomised controlled trials (RCTs) analysing the effects of aquatic therapy in adult people diagnosed with fibromyalgia, and published by October of 2022 in English or Spanish. The Cochrane Risk of Bias tool was employed to conduct the methodological quality assessment of the encompassed studies, and the overall quality of evidence for each comparison was determined using the GRADE approach. RESULTS: Of 375 articles found, 22 met the inclusion criteria. Forest plot analysis of Pittsburgh sleep quality index at short- and mid-term follow-up showed a trend in favour of aquatic therapy, although not statistically significant, with weighted mean difference (WMD) = -1.71 (95% CI: -4.17 to -0.75, p = 0.17). Heterogeneity was substantial (χ2 = 8.74, df = 5 (p < 0.000001; I2 = 95%). Relating the pain outcome by fibromyalgia impact questionnaire (FIQ) short term showed a trend in favour of the aquatic therapy group with WMD = -5.04 (95% CI: - 9.26 to - 0.82, p = = 0.02) with heterogeneity χ2 = 11.07, df = 4 (p = 0.03; I2 = 64%). Great heterogeneity was found between trials in medium term. CONCLUSION: This systematic review and meta-analysis demonstrated the effectiveness of aquatic therapy as an adjunct treatment to usual care in people suffering from fibromyalgia. Aquatic therapeutic exercise improves the symptomats of sleep quality, pain, and quality of life of adults with fibromyalgia. Further research on long-term outcomes may contribute to the currently available evidence.
RESUMO
(1) Background: COVID-19 has evolved during seven epidemic waves in Spain. Our objective was to describe changes in mortality and severity in our hospitalized patients. (2) Method: This study employed a descriptive, retrospective approach for COVID-19 patients admitted to the Hospital de Fuenlabrada (Madrid, Spain) until 31 December 2022. (3) Results: A total of 5510 admissions for COVID-19 were recorded. The first wave accounted for 1823 (33%) admissions and exhibited the highest proportion of severe patients: 65% with bilateral pneumonia and 83% with oxygen saturation under 94% during admission and elevated levels of CRP, IL-6, and D-dimer. In contrast, the seventh wave had the highest median age (79 years) and comorbidity (Charlson: 2.7), while only 3% of patients had bilateral pneumonia and 3% required intubation. The overall mortality rate was 10.3%. The first wave represented 39% of the total. The variables related to mortality were age (OR: 1.08, 1.07-1.09), cancer (OR: 1.99, 1.53-2.60), dementia (OR: 1.82, 1.20-2.75), the Charlson index (1.38, 1.31-1.47), the need for high-flow oxygen (OR: 6.10, 4.94-7.52), mechanical ventilation (OR: 11.554, 6.996-19.080), and CRP (OR: 1.04, 1.03-1.06). (4) Conclusions: The variables associated with mortality included age, comorbidity, respiratory failure, and inflammation. Differences in the baseline characteristics of admitted patients explained the differences in mortality in each wave. Differences observed between patients admitted in the latest wave and the earlier ones suggest that COVID-19 has evolved into a distinct disease, requiring a distinct approach.
Assuntos
COVID-19 , Epidemias , Humanos , Idoso , COVID-19/epidemiologia , Estudos Retrospectivos , Hospitais , HospitalizaçãoRESUMO
BACKGROUND: Physiotherapists had faced a new healthcare scenario characterised by the restrictions caused by the COVID-19 pandemic. PURPOSE: To explore the impact of the COVID-19 pandemic on the physiotherapy profession from the perspective of physiotherapists working in the public and private sectors. METHODS: Qualitative study based on semi-structured personal interviews with 16 physiotherapists working in public, private, or public-private partnership sectors in Spain. The data were collected between March and June 2020. Inductive qualitative content analysis was performed. RESULTS: The participants (13 women, 3 men; aged 24-44 years) had professional experience in diverse healthcare settings (primary, hospital, home, consultations, insurance companies, associations). Five categories were identified: (1) the impact of lockdown on the health of physiotherapy users; (2) managing the demand for physiotherapy services during lockdown; (3) introducing protocols and protective measures in physiotherapy consultations; (4) changes in therapeutic approaches; and (5) future expectations in the physiotherapy care model. Physiotherapists perceived that lockdown caused a decline in the functionality of people with chronic conditions, together with a reduction in the physiotherapy services. Difficulties in prioritising users considered urgent became evident, and the inclusion of prophylactic measures affected treatment duration differently depending on the care setting and the pandemic prompted the use of telerehabilitation. DISCUSSION: The pandemic affected the functional status of chronic physiotherapy users and made treatment time, quality of care and triage protocols visible. In physiotherapy, technological barriers need to be solved, such as digital literacy, families without resources, situations of dependency and cultural barriers.
Assuntos
COVID-19 , Fisioterapeutas , Masculino , Humanos , Feminino , COVID-19/epidemiologia , Pandemias , Espanha , Controle de Doenças Transmissíveis , Modalidades de Fisioterapia , Pesquisa QualitativaRESUMO
Objective: The study objectives were to identify the prevalence of upper crossed syndrome (UCS) and its associated factors in a population of Spanish adolescents, and to explore these associations through focus groups. Methods: The study used a sequential explanatory mixed method design. The quantitative phase consisted of a cross-sectional study in which 45 students underwent photogrammetry measurements and evaluations with the Kiddo-KINDL and VISA-TEEN questionnaires. Subsequently, several focus groups were conducted to discuss the quantitative results. Results: The results indicated a 37.8% prevalence of UCS, a 48.9% prevalence of forward head posture (FHP) and an 80% prevalence of forward shoulder posture (FSP). A positive FSP was indicated by an angle represented by the intersection of the line between the midpoint of the humerus and the spinous process of C7 of <52°. FSP was significantly higher in boys (mean [M] = 43.59, standard deviation [SD] = 6.9) than in girls (M = 47.98, SD = 6.33; p < 0.05). Boys showed significant moderate associations of FSP with body mass index (BMI) (r = -0.48, p < 0.05) and hygiene habits (r = -0.46, p < 0.05), and of FHP with worse use of technology (r = 0.53, p < 0.05). Those with UCS showed significant differences in school performance (M = 47.22, SD = 8.33, p < 0.05). Analysis of the qualitative results led to the identification of 33 codes and five categories. Conclusions: UCS was associated with factors such as BMI, school performance, use of technology and physical activity. Correcting posture in adolescence was generally believed to be necessary. Physical exercise and postural health were considered highly important among adolescents.
RESUMO
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.
Assuntos
Complicações Pós-Operatórias , Humanos , Estudos RetrospectivosRESUMO
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.
Assuntos
Transtornos Cromossômicos , Criança , Humanos , Transtornos Cromossômicos/diagnóstico , Transtornos Cromossômicos/terapia , Transtornos Cromossômicos/genética , Deleção Cromossômica , Pais , Pesquisa QualitativaRESUMO
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.
Assuntos
COVID-19 , Demência , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Pandemias , COVID-19/epidemiologia , Casas de Saúde , Família , Pesquisa QualitativaRESUMO
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. A purposeful sampling and snowball-technique were used. Patients diagnosed with moderate or severe stroke in the post-acute or chronic stage of the disease were included. Data collection consisted of in-depth interviews and researcher field notes. A thematic analysis was performed. Results: Thirty-one patients were included. Three themes were identified: 1) Providing support, with four categories, professional behavior, personalized attention, the heart of the professional and building a bond with the patient; 2) Facilitating communication, with three categories, the patient as the recipient, the content of the message and the channel, and the professional as the person that conveys the message; and 3) Promoting participation, with two categories, barriers, and incentives to participate. Conclusions: When providing support, professionals should consider communicating information and encouraging the participation of stroke patients for integrated care.
RESUMO
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.
RESUMO
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.