Living and Coping with Olfactory and Taste Disorders: A Qualitative Study of People with Long-COVID-19.

Taste and smell disorders are common symptoms of SARS-CoV-2 acute infection. In post-COVID-19 condition, symptoms can persist leading to disruption in patients' lives, to changes in their coping skills, and to the need to develop strategies for everyday life. This study aimed to describe the perspective of a group of patients with Long-COVID-19, a condition where loss of taste and/or smell was the most predominant symptom. A qualitative descriptive study was conducted. Participants who had suffered SARS-CoV-2 infection and had Long-COVID-19 loss of taste and/or smell were recruited. Purposive sampling was applied, and participants were recruited until data redundancy was reached. In-depth interviews were used for data collection and thematic analysis was applied. Twelve COVID-19 survivors (75% women) were recruited. The mean age of the participants was 55 years, and the mean duration of post-COVID-19 symptoms was 25 months. Three themes were identified: (a) Living with taste and smell disorders, describing the disorders they experience on a daily basis, how their life has changed and the accompanying emotions, (b) Changes and challenges resulting from the loss of taste and smell, changes in habits, self-care and risk in certain jobs or daily activities, (c) Coping with taste and smell disorders, describing the daily strategies used and the health care received. In conclusion, Long-COVID-19 taste and/or smell disorders limit daily life and involve changes in habits, meal preparation, and the ability to detect potentially dangerous situations.

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-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. CONCLUSIONS: 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.

Gender Differences in the Co-Use of Tranquilizers, Sedatives, Sleeping Pills and Alcohol among Spanish Adolescents: A Nationwide Population-Based Study.

Adolescence is a critical developmental stage for the initiation of substance use worldwide, which is one of the main risk-taking behaviors that may impact adolescents' physical and mental well-being. The aims of this study were to (1) assess the prevalence of the co-use of tranquilizers, sedatives, and sleeping pills with alcohol (TSSp&AC) by gender in the Spanish adolescent population in 2018 and (2) identify the variables associated with TSSp&AC. An observational cross-sectional study following STROBE guidelines was conducted. We analyzed data from 38,010 adolescents aged 14 to 18 years old (18,579 males and 19,431 females) who participated in ESTUDES (Survey on Drug Use in Secondary Education in Spain) 2018. Female adolescents reported a higher prevalence of TSSp&AC than males (p < 0.001). The factors associated with female co-use were being 16-18 years of age (OR 1.65); the consumption of tobacco (OR 1.73), cocaine (OR 1.84), other illicit psychoactive drugs (OR 1.89); and novel illicit psychoactive drugs (OR 1.74); no perceived health risk from the consumption of TSSps (OR 2.45); and the perceived availability of TSSps (OR 2.23) and alcohol (OR 2.09). There are several factors associated with TSSp&AC in Spanish female adolescents with potential implications for healthcare providers.

Coping with the hospital environment during the COVID-19 pandemic: A qualitative study of the survivors' perspective during their stay at the ICU and inpatient ward.

The COVID-19 pandemic has significantly affected the clinical practice of healthcare professionals. This study aimed to explore the perspectives of COVID-19 survivors regarding the healthcare they received during their stay in the Intensive Care Unit (ICU) and the inpatient COVID-19 ward. A qualitative case-study approach was implemented. Participants were recruited using non-probabilistic purposeful sampling strategy. Inclusion criteria included patients aged ≥18 years who received follow-up from the Pulmonology service at a Hospital in de North of Spain, were diagnosed with COVID-19 and bilateral pneumonia, and were admitted to the ICU before being transferred to a COVID-19 inpatient ward. Data was collected through in-depth interviews and researchers' field notes, and thematic analysis was performed. Techniques such as credibility, transferability, dependability, and confirmability were employed to ensure the trustworthiness of the data. A total of 25 individuals (six women) were included in the study. Three main themes emerged from the analysis: common challenges faced in both units, coping with the hospital stay, and developing strategies. Findings highlighted the need to improve information dissemination, individualize care, and enhance direct patient interaction. Moreover, the study shed light on the psychological impact of hospitalization and ICU experience, including feelings of loneliness, confinement, and the lack of memories from the ICU stay, as well as the influence of care and healthcare language. Finally, strategies such as keeping the mind occupied and maintaining self-discipline were identified as crucial during hospitalization. These findings provide valuable insights for healthcare professionals in delivering care to individuals with COVID-19 in the ICU and hospital ward settings.

The Meaning of Physical Education Practice in Students with Attention-Deficit Hyperactivity Disorder (ADHD).

Purpose: This study seeks to describe the perspective of students with attention-deficit hyperactivity disorder (ADHD) and physical education (PE) teachers concerning physical activity practice in high school. Methods: A qualitative descriptive study based on an interpretative framework was conducted with secondary school students with ADHD, and their teachers of physical education. In-depth interviews and researchers' field notes were used to collect the data. Purposive sampling and inductive thematic analysis were applied. Results: Results show that ADHD is not experienced as limiting the practice of PA and PE by students, except in motor activities that require concentration such as tactical games. On the contrary, PA and PE helps them feel better. Teachers have not had to make extensive methodological modifications in their teaching styles with students with ADHD in relation to other situations or incidents. Conclusions: Students with ADHD do not seem to show significant difficulties in PE lessons or in the practice of extracurricular PA. PE teachers do not need to make significant adaptations with these students.

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

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

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. 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.

Preocupaciones sobre la atención sanitaria en progenitores de niños con diferentes encefalopatías epilépticas genéticas del desarrollo: Un estudio cualitativo.

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.

Quality of life, socioeconomic and psychological concerns in parents of children with tuberous sclerosis complex, STXBP1 and SYNGAP1 encephalopathies: a mixed method study.

Background: Developmental and Epileptic Encephalopathies (DEEs) occur in childhood and are associated with severe epileptic seizures and neurological impairment. The aim of this study was to combine quantitative and qualitative methodologies to comprehensively describe factors related to quality of life, impact on the family and psychosocial factors in parents of children with TSC, STXBP1 and SYNGAP1 variants. Methods: A convergent parallel mixed design including parents of children with DEE. In the cross-sectional study, 20 parents (10STXBP1, five SYNGAP1, five TSC) were given questionnaires on quality of life, impact on the family and psychological factors. In the descriptive qualitative study, in-depth interviews were conducted with 18 parents (nine STXBP1, five TSC, four SYNGAP1) using a semi-structured questionnaire. A thematic analysis was carried out. The results of the two studies were combined by showing similarities and differences through tables, figures, accounts, and joint displays. Results: In terms of quality of life, the integrated results were consistent in highlighting the importance of family interaction, although in the qualitative section the influence of the relationship between the children's siblings, the relationship with health professionals and the difficulties in obtaining public aid were highlighted. In terms of impact, the integrated results show that the illness has a significant impact on the family; the financial burden is highlighted, and the experience of the illness is discussed in depth. Finally, the psychological aspects, symptoms such as anxiety, stress and strain, were consistent. Most of the participants reported sleep disturbance, as identified in the questionnaire, although not mentioned in the interviews. Conclusions: The combined results of the mixed method provide an in-depth analysis of the impact of DEEs on parents of children with STXBP1, SYNGAP1 and TSC.

Special Issue "Post-COVID-19 Symptoms in Long-Haulers: Definition, Identification, Mechanisms, and Management".

The worldwide spread of coronavirus disease 2019 (COVID-19), a condition caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pathogen, led to the most unprecedented disease outbreak of this century, provoking around 770 million confirmed cases and nearly 7 million deaths globally [...].

Patterns of Opioid and Non-Opioid Analgesic Consumption in Patients with Post-COVID-19 Conditions.

Pain is a major health issue for healthcare systems, and access to pain treatment is a fundamental human right. Pain is a common symptom experienced in the post-COVID phase by a significant percentage of patients. This study describes the prevalence and associated factors associated with the use of opioid and non-opioid analgesics in subjects with post-COVID-19 condition. Sociodemographic data, post-COVID symptoms, health profile, and opioid and non-opioid analgesic consumption were collected in 390 subjects with post-COVID-19 condition. We analyzed the independent effect of all variables on opioid/non-opioid analgesic consumption by using logistic multivariate regressions. The prevalence of opioid and non-opioid analgesic consumption was 24.1% and 82.3%, respectively. Tramadol (17.18%) and codeine (7.95%) were the most commonly used opioid analgesics, and Paracetamol (70%) and ibuprofen (45.4%) were the most commonly used non-opioid analgesics. Females were more likely to consume non-opioid analgesics (aOR2.20, 95%CI 1.15, 4.22) than males. Marital status of married/partner vs. single (aOR2.96; 95% CI 1.43, 6.12), monthly income < EUR 1000 VS. > EUR 2000 (aOR3.81; 95% CI 1.37, 10.61), number of post-COVID symptoms < 5 (aOR2.64, 95%CI 1.18, 5.87), and anxiolytics consumption (aOR 1.85, 95%CI 1.05, 3.25) were associated with a greater likelihood of opioid analgesic consumption. Age > 55 years (aOR3.30, 95%CI 1.34, 8.09) and anxiolytics consumption (aOR2.61, 95%CI 1.36, 4.98) were associated with a greater likelihood of non-opioid analgesic consumption. Opioid analgesic consumption was highly associated (aOR 3.41, 95%CI 1.27, 6.11) with non-opioid analgesic consumption. The prevalence of opioid analgesic and non-opioid analgesic consumption in individuals with post-COVID-19 condition was 24.1% and 82.3%. Females with post-COVID-19 condition showed higher non-opioid analgesic consumption than men. Predictors of opioid consumption were marital status, lower monthly income, number of post-COVID symptoms, and anxiolytic consumption. Older age and anxiolytic consumption were predictors of non-opioid consumption.

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. MATERIALS AND METHODS: The study design is a qualitative descriptive study. A purposeful sampling of 30 women (mean age, 42.7; standard deviation, 10.6) who had received at least two administrations of OBT-A for CM (PREEMPT protocol) was performed. Data collection included in-depth interviews and researchers' field notes. A thematic analysis was carried out according to qualitative research guidelines. RESULTS: Five themes were identified: (a) A long way to go before Botox®, (b) First time hearing about the treatment and its expectations, (c) The administration of Botox®, (d) Treatment effects, and (e) Follow-up. Patients described a long history of treatment failures prior to the start of OBT-A treatment. Information about this migraine treatment came from the neurologist; following the information, patients had high expectations, including unrealistic expectations regarding the onset and duration of effect. They acknowledged fear of the injections and some discomfort due to the procedure. With treatment, participants reported better migraine control and an improvement in their quality of life. Follow-up had some barriers, such as delayed appointments for subsequent doses, but also strengths, such as effectiveness and few side effects. CONCLUSIONS: Qualitative research offers insight into how patients with CM experience treatment with OBT-A. Our results highlight some relevant aspects that should be considered when providing OBT-A treatment.

Women had unrealistic expectations regarding the onset and duration of OBT-A effect.With OBT-A treatment, women perceived better migraine control and improved quality of life.Follow-up had barriers, such as delayed appointments for subsequent doses.

The caregiver's perspective on end-of-life inpatient palliative care: a qualitative study.

INTRODUCTION: Understanding patient and caregiver experience is key to providing person-centered care. The palliative care approach includes holistic assessment and whole-person care at the end of life, that also involves the patient's family and loved ones. The aim of this study was to describe the way that family caregivers experienced patients' deaths during their loved ones' last hospital admission, comparing inpatient palliative care (PCU) and non-palliative care (Non-PCU) units. METHODS: A qualitative case study approach was implemented. Family caregivers of terminally ill patients admitted to the Infanta Elena Hospital (Madrid, Spain) between 2016 and 2018 were included using purposeful sampling. Eligible caregivers were first-degree relatives or spouses present during the patient's last hospital admission. Data were collected via in-depth interviews and researchers' field notes. Semi-structured interviews with a question guide were used. A thematic inductive analysis was performed. The group of caregivers of patients admitted to the PCU unit and the group of caregivers of patients admitted to Non-PCU were analyzed separately, through a matrix. RESULTS: In total 24 caregivers (12 from the PCU and 12 from Non-PCU units) were included. Two main themes were identified: caregivers' perception of scientific and technical appropriateness of care, and perception of person-centred care. Scientific appropriateness of care was subdivided into two categories: diagnostic tests and treatment, and symptom control. Perception of person-centred care was subdivided as: communication, emotional support, and facilitating the farewell process. Caregivers of patients admitted to a PCU unit described their experience of end-of-life care as positive, while their Non-PCU unit counterparts described largely negative experiences. CONCLUSIONS: PCU provides a person-centered approach to care at the end of life, optimizing treatment for patients with advanced disease, ensuring effective communication, establishing a satisfactory professional relationship with both patients and their loved ones, and facilitating the farewell process for family caregivers.

This article describes a qualitative case study focusing on family caregivers' perception of end-of-life care during their loved ones' dying process in their last hospital admission. Differences were observed between palliative care and non-palliative care groups regarding the perception of scientific appropriateness of care and person-centered nature of care as reported by caregivers.

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. STUDY DESIGN: A qualitative phenomenological study was conducted involving 18 manual workers with CTS diagnosed by the neurology service of a public hospital. METHODS: Purposive sampling was applied, and data were collected using in-depth interviews and researchers' notes. An inductive thematic analysis was applied to identify themes reflecting the participants' experience. Guba and Lincoln criteria were applied to establish the trustworthiness of the data. RESULTS: The mean age of participants was 40.06 years (SD 9.86). Four themes were identified: (a) coping with work limitations; (b) work activities that aggravate symptoms; (c) relationships at work; and (d) the economic burden of CTS. The effect of work on CTS, daily constraints, work situations that trigger the symptoms, and the strategies used by participants to adapt to their work are described. In addition, they recounted how relationships with managers and coworkers are modified and how CTS affects family finances. CONCLUSIONS: The findings describe aggravating factors among working women, coping strategies used, and the social and occupational impact of CTS.

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. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers' field notes. A thematic analysis was performed. RESULTS: This study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care. CONCLUSIONS: Describing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.

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. A cross-sectional study was conducted based on the STROBE guidelines. Patient questionnaires and standardized tools were used. A descriptive analysis was conducted establishing the proportions of subjects for each of the characteristics of interest. In total, 51 genetically confirmed SMA type I subjects were included. Fifty-seven percent received oral feeding, 33% received tube feeding and 10% combined both. Moreover, 21.6% had tracheostomies, and 9.8% needed more than 16 h/d ventilatory support. Regarding orthopedic status, 66.7% had scoliosis, and 68.6% had hip subluxation or dislocation. Up to 67% were able to sit independently, 23.5% walked with support and one child walked independently. Current SMA type I is a different entity from the classic phenotype but also from types II and III. In addition, no differences were found between SMA type I subgroups. These findings may enable the professionals involved in the care of these patients to improve their interventions in terms of prevention and rehabilitation measures for these children.

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. A purposeful sampling technique approach was used including the home-based interdisciplinary pediatric palliative team. Data were collected via semi-structured interviews and researchers' field notes. A thematic analysis was performed. Two themes emerged: (a) changing life for the better, which described how professionals value life more and helping children and families provides compassion satisfaction, which is comforting and explains their dedication to care; (b) adverse effects of work highlighted the emotional burden of caring for children with life-limiting or life-threatening illnesses, which can affect their job satisfaction and may lead to burnout, showing how experiencing in-hospital child deaths with suffering leads professionals to develop an interest in specializing in pediatric palliative care. Our study provides information on possible causes of emotional distress in professionals caring for children with life-threatening illnesses and highlights strategies that can help them to reduce their distress.

Barriers and Facilitators to the Learning and Acquisition of Research Competencies among Nursing Students through Active Methodologies: A Qualitative Study Using Reflective Writing.

BACKGROUND: The development of educational research, critical thinking skills, and evidence-based practice requires proposals for educational innovation. The purpose of this study was to explore the perspectives of undergraduate nursing students on the barriers and facilitators after the implementation of a novel activity within the course of research methodology, composed of three active learning strategies: (a) project-based learning; (b) small-group learning; and (c) self-directed learning. METHODS: A qualitative exploratory study using reflective writing was conducted at the Nursing Department of the Red Cross School (Spain). Seventy-four nursing students participated in the study, enrolled in the research methodology course. Purposive sampling was used. Online reflective notes were collected from a script of open-ended questions. An inductive thematic analysis was performed. RESULTS: The new proposals facilitated learning of the subject matter and its contents. They were useful and enabled the students to put the contents into practice. In addition, they improved the students' organization, planning, and involvement. The barriers identified were a lack of time, ambiguity, inadequate tutoring or novelty of the work, and inequity in the distribution of tasks and workloads. CONCLUSIONS: Our findings shed light on the barriers and facilitators identified by nursing students when implementing an educational innovation proposal, using three active learning methodologies as learning tools for the subject of nursing research.

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. Women with a clinical and electromyographic diagnosis of CTS recruited from the Neurology Department of a Public Hospital were included. Purposeful sampling was performed. Data were collected using in-depth interviews and researchers' field notes. Analysis proposed by Giorgi was used. RESULTS: A total of 18 women with CTS were included. Two themes emerged: a) Living with CTS symptoms and limitations: describing the symptoms experienced, triggers of their symptoms and how they define CTS. Also, describing the difficulties that they experience on a daily basis, at home when handling tools, communicating, driving, and at work; and b) developing daily strategies for managing limitations: developing potential daily strategies to overcome daily limitations and/or compensate for them, and seeking professional help. CONCLUSIONS AND SIGNIFICANCE: Current results provide insight on how symptoms and daily limitations are experienced by a group of women with CTS. These findings could help occupational therapists to understand the day-to-day difficulties and the reasons for developing certain strategies.

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

AIM: To describe the experience of relatives of residents with dementia residing in locked-down nursing homes during the first outbreak of the COVID-19 pandemic, concerning their relationships with nurses and the nursing care applied. METHODS: A qualitative descriptive study was carried out and purposive sampling was applied. Participants were first- and second-degree relatives of residents with dementia, who lived permanently in a nursing home and who were admitted prior to the COVID-19 pandemic. 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.