A novel application of lemmatize and thematic analysis to understand protective measures perspectives of patients with chronic respiratory disease during the first outbreak of COVID-19 pandemic: a qualitative study.

Objective: To describe the perspectives of a group of COPD patients during the first outbreak of the COVID-19 pandemic and narrate the emotions and polarity (acceptance-rejection) regarding living with COPD during the pandemic. Design/methods: We used a novel application of lemmatization and thematic analysis of participants' narratives. A study was carried out with eight patients with moderate-severe-very severe COPD during the first outbreak of COVID-19 using purposive sampling. In-depth interviews and field notes from the researchers were used to collect data. A statistical content analysis (lemmatization) of the patients' narratives was performed. Additionally, inductive thematic analysis was used to identify emerging themes. This study was conducted following the guidelines of Consolidated Criteria/Standards for Reporting Qualitative Research. The study was conducted in accordance with the principles articulated in the WMA Declaration of Helsinki. Participants provided verbal informed consent prior to their inclusion as previously described. Results: The average age of our sample was 65 years, and 75% of the patients suffered from moderate COPD, 12.5% from severe COPD, and 12.5% from very severe COPD according to GOLD criteria. The lemmatized and sentiment analysis showed a predominance of positive emotions, and the polarity of the interviews indicated a very slight positive trend towards acceptance of the experience lived during the pandemic. Additionally, three main themes were identified: (1) Confinement and restriction measures, (2) COVID-19 and protective measures, and (3) Clinical care during the first outbreak of the pandemic. Conclusion: Patients experienced confinement with a feeling of security and protection. They strictly respect social distancing. They used masks, but these caused them to feel short of breath and fatigue, especially FFP2 masks. Half of the patients rejected the possibility of being vaccinated. Finally, they were very satisfied with the clinical care they received in the COPD unit of their hospital. Our results show that COPD patients have not experienced a negative impact of the COVID-19 pandemic.

"I Have Faith in God That I Will Get Better"-The Multidimensional Perceptions and Expectations of Patients with Chronic Shoulder Pain: A Qualitative Analysis of Common Sense.

OBJECTIVE: This descriptive qualitative study aimed to gain insights into the expectations of individuals with chronic shoulder pain and to investigate how different levels of disability may influence their beliefs and expectations regarding improvement. METHODS: This qualitative study utilized the Common Sense Model (CSM) as its theoretical framework. Conducted within a public physical therapist clinic, individuals with chronic shoulder pain who were awaiting the initiation of the treatment were included. Participants, female and male [aged 30 to 69 years], were purposefully sampled. Thirty participants, categorized into 2 groups based on the Shoulder Pain and Disability Index (SPADI) scores, underwent semi-structured interviews. Group 1, lower SPADI scores (0 to 60), had 10 participants, and Group 2, higher SPADI scores (61 to 100), had 20 participants. Thematic analysis and inductive coding were employed to analyze the interviews. RESULTS: Common themes emerged in both groups: the use of medical terms for understanding the diagnosis and the multidimensional impact of pain. The last 2 themes differed between groups. Notable differences included Group 1's focus on resources for pain relief and positive expectations with physical therapy, while Group 2 emphasized rest, religion as a resource for pain relief, and God's role in improvement. CONCLUSION: These findings highlight the complexity of beliefs and expectations among patients with chronic shoulder pain. Individuals with greater disability often incorporated religious beliefs into their coping strategies, but they held lower recovery expectations and reported negative treatment experiences. These insights have implications for tailoring patient-centered care approaches. IMPACT: This study underscores the need for health care providers to consider the multidimensionality of recovery expectations, which can significantly influence patient outcomes. Clinicians can reflect on this knowledge to optimize treatment strategies and improve patient prognosis.

Locked-in syndrome: A qualitative study of a life story.

INTRODUCTION: Locked-in syndrome (LIS) is characterized by tetraplegia, anarthria, paralysis of cranial nerves, and facial musculature, with the preservation of consciousness and cognitive abilities, as well as vertical eye movements and eyelid movements, hearing, and breathing. Three types of LIS are distinguished: classic, incomplete, and total. The aim of the present study was to describe the life history of a person with LIS, as well as the wife's experience and perspective of this life history. METHODS: A qualitative life history study was conducted with two participants: a 54-year-old man diagnosed with LIS and his 50-year-old wife. Data were collected through interviews and autobiographical documents submitted by the participants and analyzed following Braun and Clarke's method of inductive thematic analysis. RESULTS: Five main themes were identified: (1) how to understand and overcome the new situation; (2) the process of care and rehabilitation; (3) communication; (4) writing as a way of helping oneself and others; and (5) personal autonomy and social participation. CONCLUSION: The participants valued the support of their friends and family in the acceptance stage of the new situation, giving special importance to the communication skills and medical attention received after diagnosis.

The impact of developmental and epileptic encephalopathies on families: a qualitative study.

Developmental and epileptic encephalopathies (DEEs) cause disability and dependence affecting both children and the family. The aim of the study was to describe the perspective of parents of children with DEEs regarding the impact of the disease on the family. We carried out a qualitative study based on the interpretivist paradigm. Twenty-one participants were selected using purposive sampling. Parents of children with DEEs of SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants were included. In-depth interviews and researcher notes were used for data collection. A thematic analysis was performed on the data. Three themes were identified in the results: (a) Assuming conflicts and changes within the couple, causing them to distance themselves, reducing their time and intimacy and leading them to reconsider having more children; (b) impact of the disorder on siblings and grandparents, where siblings perceived DEE as a burden in their lives, felt neglected, and needed to grow and mature alone; conversely, the grandparents suffered for their grandchildren and the parents, in addition to perceiving that their health worsened, and (c) reconciling the care of the child with family life and work; this led the parents to share tasks, abandon or reduce working hours and ask for help.Conclusions: Caring for a child with DEE can result in neglect of social, psychological, emotional, recreational, educational, or occupational needs and obligations that ultimately impact all family members. What is Known: • Children with DEE may develop seizures and experience developmental and cognitive problems. • Caring for a child with DEE has a social and psychological impact on the entire family.

Experience of Diagnosis and Initiation of Renal Replacement Therapy in Women with Chronic Kidney Disease.

Chronic kidney disease (CKD) has considerable effects on the quality of life of female patients. Receiving the diagnosis and beginning renal replacement therapy (RRT) has a great personal impact on patients. The purpose of this study was to describe the experience of female patients with CKD at an ambulatory dialysis unit regarding diagnosis, life changes, and initiation of RRT. A qualitative exploratory study was conducted based on a social contructivism framework. Participants were recruited using purposeful sampling. In total, 18 women who received treatment for CKD with RRT were included. The women were attending the Ambulatory Dialysis Unit at a hospital belonging to the public health system of Madrid (Spain). Unstructured and semi-structured in-depth interviews, researchers' field notes, and women's personal letters were used. A systematic text condensation analysis was performed. The criteria used to control trustworthiness were credibility, transferability, dependability, and confirmability. Two themes emerged from the data: (a) A turning point in their lives, and (b) The emotional journey of beginning RRT. The diagnosis of CKD and the beginning of treatment implies changing routines and adapting to a new life with CKD. The first dialysis and puncture of the arteriovenous fistula is a major experience. Support from other CKD patients with more experience is perceived as a necessity and a tool to share their experiences and resolve doubts among peers. The diagnosis and initiation of RRT leads to numerous changes in the lives of women with CKD, which may influence the acceptance of treatment.

The role of duty, gender and intergenerational care in grandmothers' parenting of grandchildren: a phenomenological qualitative study.

OBJECTIVES: The aim of this study was to describe grandmothers' experiences of taking care of their grandchildren in terms of their care-giving tasks, motivations and emotions. METHODS: A qualitative phenomenological study was conducted. Purposive sampling was used, based on the relevance of the research question. Seventeen participants were included, women ≥ 65 years old, grandmothers who care for their grandchildren at least 10 h per week and who attended the Nursing units of the Primary Care Health Centers (Madrid Public Health Service). Seventeen in-depth interviews were conducted. The interviews were audio-recorded, transcribed verbatim and thematic analysis was carried out from the perspective of hermeneutic phenomenology. For the analysis, the Excel program was used to organize and share the coding process. Also, we followed COREQ guidelines. RESULTS: Four main themes were identified: (a) Care out of obligation, where participants feel an obligation to help their children by caring for grandchildren, regardless of their number, and prefer to do so voluntarily; (b) Care out of responsibility, where grandmothers see their role as a responsibility that includes saving costs by caring for grandchildren and facilitating their children's work life balance; (c) Care as a social duty, reflecting a moral commitment inherited from their mothers to help future generations; and (d) Construction of care from a gender perspective, where grandmothers, as women, primarily assume the care and upbringing of grandchildren. DISCUSSION: Our results contribute to increase knowledge about childcare provided by grandmothers to their grandchildren. Grandmothers become fundamental pillars of families by helping their children balance family and work. Behind this care there is a strong sense of obligation, duty and generational responsibility. Grandmothers' help presents differences in the distribution of tasks and care by sex. Identifying factors that motivate grandmothers to care for their grandchildren helps nurses to perform higher quality comprehensive care.

Trends in the nonmedical misuse of benzodiazepines and Z-hypnotics among school-aged adolescents (2016-2021): gender differences and related factors.

BACKGROUND: The misuse of psychotropic medication has increased during the past decade, especially among adolescents. The aim of our study was to describe the prevalence and patterns of the nonmedical use of benzodiazepines (BDZ) and Z-hypnotics among school-aged adolescents through the lens of sex. In addition, we sought to analyze the temporal evolution of the nonmedical use of these drugs during the period 2016-2021. METHODS: The temporal evolution of the nonmedical use of these drugs was analyzed based on survey data collected in 2016, 2018 and 2021, which includes the first years of the COVID-19 pandemic. To assess the possible effect of the COVID-19 pandemic, the year at survey was conducted was introduced as a categorical variable. We used data from the Spanish State Survey on Drug Use in Secondary Education, which covers drug use among students aged 14-18 years. Using multivariate logistic regression models, we estimated the independent effect of different variables (sociodemographic data, use of other psychoactive substances, risk perception and availability) on the nonmedical use of BDZ and Z-hypnotics. RESULTS: In total, survey data from 95,700 adolescents were included in our analysis. The nonmedical use of BDZ and Z-hypnotics increased among adolescents during the study period. The adjusted odds ratio (AOR) from 2016 to 2018 was 1.11 (95% CI 0.94-1.31) and from 2018 to 2021 the AOR was 1.26 (95% CI 1.08-1.46), using 2016 and 2018, respectively, as reference years. The nonmedical use of BDZ and Z-hypnotics was more likely in adolescent girls than boys (AOR = 2.11). The nonmedical use of prescription opioids (AOR = 3.44), novel psychoactive substances and other illicit psychoactive drugs (AOR = 4.10) were risk factors for the nonmedical use of BDZ and Z-hypnotics in both sexes. Use of cannabis (AOR = 1.38) was a predictor of nonmedical use in female adolescents only. CONCLUSIONS: This study shows that the trend of the nonmedical use of BDZ and Z-hypnotics among school-aged adolescents in Spain increased between 2016 and 2021. Among adolescents aged 14 to 18, the probability of nonmedical use of these psychoactive substances was twice as high for female adolescents as for male adolescents.

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-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.

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.

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.

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.

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.