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.

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.

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.

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.

Experiences surrounding the diagnostic process and care among parents of children diagnosed with Phelan-McDermid syndrome: A qualitative study.

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.

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.

Chronic cardiovascular nursing care in Spanish primary care: A qualitative study.

AIMS: We aimed to investigate the perspective of primary care nurses on their role with patients who have chronic cardiovascular disease and to identify cultural elements shared by nurses caring for people with chronic cardiovascular disease. In primary care, the role of the nurse is essential to promote self-efficacy in cardiovascular self-care. Individuals with chronic cardiovascular disease need to integrate the disease into their life, together with the health recommendations for management and follow-up. METHODS: A qualitative, focused ethnographic study was conducted. Purposeful sampling was used to include nurses who were working in primary care during the study. Data collection took place between 20 January and 20 May 2014 and consisted of semi-structured interviews. A thematic analysis was applied using the data. RESULTS: Eleven participants were included. Cardiovascular care forces nurses to reflect on their identity and role in primary care. The relationship between the nurse and people with chronic cardiovascular disease is a complex process, which may cause nurses to feel a sense of failure and monotony in their work. CONCLUSIONS: Our findings may help to understand the role of the nurse and the care provided in patients with chronic cardiovascular disease.

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.

Conservative non-pharmacological interventions in women with pelvic floor dysfunction: a systematic review of qualitative studies.

BACKGROUND: Women's adherence is essential to physiotherapeutic treatment of pelvic floor dysfunction, but its related factors are not usually considered in the development of treatment approaches. This study aims to understand how women with pelvic floor dysfunction experience pelvic floor conservative non-pharmacological treatment options. METHODS: A systematic review of qualitative studies. The electronic search was performed in MEDLINE/PubMed, CINAHL, Lilacs, SCOPUS, and Web of Science databases. Primary articles on qualitative methods focused on the experience of women regarding pelvic floor conservative non-pharmacological interventions, i.e., pelvic floor muscle training (PFMT), either associated or not with biofeedback, perineal massage, vaginal dilators, and others. A meta-aggregation was performed. RESULTS: It was included 22 manuscripts in this review. It was found seven studies about the use of vaginal devices, two about manual intervention and 14 studies on women's experience with PFMT. The findings were synthesized as follows: I) women's experience of manual interventions; II) women's experience using vaginal devices changes according to health professional attitudes; III) women's experiences using vaginal devices varied depending on their pelvic floor dysfunction; IV) reported side effects due to the use of vaginal devices; V) external factors influencing PFMT performance; VI) women's perception of their own personal factors influencing PFMT performance; VII) PFMT characteristics influencing women's adherence; VIII) strategies used by women to include PFMT in their routine. CONCLUSION: Women's experience with pelvic floor conservative non-pharmacological treatment options is a complex phenomenon that involves many more variables than simply personal aspects. This is a systematic review of qualitative studies registered in the PROSPERO (CRD42018080244).

Fatigue and Dyspnoea as Main Persistent Post-COVID-19 Symptoms in Previously Hospitalized Patients: Related Functional Limitations and Disability.

BACKGROUND: Multicentre studies focussing on specific long-term post-COVID-19 symptoms are scarce. OBJECTIVE: The aim of this study was to determine the levels of fatigue and dyspnoea, repercussions on daily life activities, and risk factors associated with fatigue or dyspnoea in COVID-19 survivors at long term after hospital discharge. METHODS: Age, gender, height, weight, symptoms at hospitalization, pre-existing medical comorbidity, intensive care unit admission, and the presence of cardio-respiratory symptoms developed after severe acute respiratory syndrome coronavirus 2 infection were collected from patients who recovered from COVID-19 at 4 hospitals in Madrid (Spain) from March 1 to May 31, 2020 (first COVID-19 wave). The Functional Impairment Checklist was used for evaluating fatigue/dyspnoea levels and functional limitations. RESULTS: A total of 1,142 patients (48% women, age: 61, standard deviation [SD]: 17 years) were assessed 7.0 months (SD 0.6) after hospitalization. Fatigue was present in 61% patients, dyspnoea with activity in 55%, and dyspnoea at rest in 23.5%. Only 355 (31.1%) patients did not exhibit fatigue and/or dyspnoea 7 months after hospitalization. Forty-five per cent reported functional limitations with daily living activities. Risk factors associated with fatigue and dyspnoea included female gender, number of pre-existing comorbidities, and number of symptoms at hospitalization. The number of days at hospital was a risk factor just for dyspnoea. CONCLUSIONS: Fatigue and/or dyspnoea were present in 70% of hospitalized COVID-19 survivors 7 months after discharge. In addition, 45% patients exhibited limitations on daily living activities. Being female, higher number of pre-existing medical comorbidities and number of symptoms at hospitalization were risk factors associated to fatigue/dyspnoea in COVID-19 survivors 7 months after hospitalization.

Prevalence of Neuropathic Component in Post-COVID Pain Symptoms in Previously Hospitalized COVID-19 Survivors.

Objectives: To investigate the prevalence of neuropathic pain symptoms and to analyze the correlation between neuropathic symptoms with pain-related, psychological, and cognitive variables in COVID-19 survivors exhibiting "de novo" post-COVID pain. Methods: Seventy-seven (n = 77) previously hospitalized COVID-19 survivors presenting with post-COVID pain completed demographic (such as age, height, and weight), pain-related (the duration and intensity of pain), psychological (depressive/anxiety levels), and cognitive (catastrophizing and kinesiophobia) variables. The Self-Report Leeds Assessment of Neuropathic Symptoms and Signs (S-LANSS) questionnaire was also assessed. After conducting multivariable correlation analyses, a stepwise multiple linear regression model was performed to identify S-LANSS predictors. Results: Participants were assessed a mean of 6.0 (SD 0.8) months after hospital discharge. Nineteen (24.6%) exhibited neuropathic pain symptoms (S-LANSS score≥12 points). The S-LANSS score was positively associated with the duration of post-COVID pain (r: 0.262), anxiety levels (r: 0.275), and kinesiophobia level (r: 0.291) (all, P < 0.05). The stepwise regression analysis revealed that 12.8% of the S-LANSS variance was just explained by kinesiophobia. Conclusion: This study found that almost 25% of previously hospitalized COVID-19 survivors with "de novo" post-COVID pain reported a neuropathic pain component. The presence of neuropathic pain symptomatology was associated with more anxiety and kinesiophobia, but only kinesiophobia level was significantly associated explaining 12.8% of the variance of the S-LANSS score.

Under-graduate nursing students working during the first outbreak of the COVID-19 pandemic: A qualitative study of psychosocial effects and coping strategies.

BACKGROUND: The first wave of the COVID-19 pandemic caused a shortage of health care staff, forcing the hiring of senior nursing students. AIMS: To describe the psychosocial impact and coping strategies used by nursing students during the first outbreak of the COVID-19 pandemic and to understand the coping strategies they employed. METHOD: A qualitative exploratory study was conducted, based on Sandelowski's proposal. Purposive sampling was carried out to recruit 18 students hired during the pandemic. The students were interviewed between 18 March and 15 June 2020. Semi-structured interviews were conducted using a digital platform. An inductive thematic analysis was performed. FINDINGS: The students lived alone and isolated during their contract to protect their cohabitants from possible contagion. The impact of working during the pandemic leads to experiences of stress, insomnia, nightmares and anxiety. Nursing students coped with the emotional burden through mental disconnection and the support of co-workers and family members. CONCLUSION: Psychological support and tutoring should be provided by health centres. In addition, in these special circumstances, universities should adapt the training provided.

Volunteering as a Meaningful Occupation in the Process of Recovery From Serious Mental Illness: A Qualitative Study.

IMPORTANCE: Volunteering is an activity that facilitates social welfare, a sense of connection to others, and the construction of links with other people and the community. OBJECTIVE: To describe the experience of a group of people with serious mental illness (SMI) who engaged in community volunteer work. DESIGN: Qualitative, phenomenological study using purposeful sampling and an inductive thematic analysis. SETTING: Several mental health community centers in Madrid and Catalonia, Spain. PARTICIPANTS: People with SMI engaged in community volunteer work. Outcomes and Measures: In-depth interviews were used to collect data. RESULTS: Two themes, with four subthemes each, emerged from the data: (1) engaging in a meaningful occupation enhances the recovery process (subthemes: undergoing positive experiences, performing or resuming a meaningful occupation, living in the present moment, and relating with one's social and family environment) and (2) a process of mutual support (subthemes: in helping others, you help yourself; helping others on the basis of one's first-person experience; recover before you can help others; and role of professionals in volunteering). CONCLUSIONS AND RELEVANCE: Volunteering is perceived as a meaningful occupation. Helping others generates a reciprocal benefit that favors the recovery process and contributes to the establishment of personal and social bonds. What This Article Adds: This study provides a basis for understanding the potential of volunteering to be a meaningful occupation in the recovery process of people with SMI. It can help occupational therapy practitioners develop volunteer-based intervention programs that support the recovery process.

Ethical challenges during the COVID-19 pandemic: Perspectives of nursing students.

BACKGROUND: The first wave of the COVID-19 pandemic caused a shortage of qualified nurses in Spain. As a result, the government authorized the hiring of senior students. OBJECTIVES: To explore the ethical dilemmas and ethical conflicts experienced by final-year nursing students who worked during the first outbreak of the COVID-19 pandemic in Spain. RESEARCH DESIGN: A qualitative exploratory study was conducted using purposive sampling. Semi-structured interviews were carried out using a question guide. Interviews took place via a private video chat room platform. A thematic, inductive analysis was performed of the information gathered. PARTICIPANTS AND RESEARCH CONTEXT: Eighteen nursing students were recruited from two universities of Madrid, aged between 18 and 65 years old, enrolled in the fourth year of nursing studies and who were hired under a relief contract for health professionals during the pandemic. ETHICAL CONSIDERATIONS: The present study was carried out in accordance with the Declaration of Helsinki, and the study was approved by the Local Ethics Committee of Universidad Rey Juan Carlos. RESULTS: Three specific themes emerged: (a) coping with patient triage, (b) difficulties in providing end-of-life care, and (c) coping with patient death. Nursing students participated in the process of patient selection for resource allocation and ICU bed occupancy. They were shown how to care for patients who were not admitted to the ICU, in their last moments and were faced with the difficulties of applying end-of-life care. Finally, the nursing students were confronted with the death of their patients, in overwhelming numbers and under adverse conditions. CONCLUSIONS: These findings can help shed light on the ethical dilemmas and ethical conflicts faced by novice nursing students, incorporated into the workforce during the COVID-19 pandemic. Moreover, it was described that students may normalize the death due to the exhaustion and overwhelmed routine.

The presence of headache at onset in SARS-CoV-2 infection is associated with long-term post-COVID headache and fatigue: A case-control study.

OBJECTIVE: To investigate the association of headache during the acute phase of SARS-CoV-2 infection with long-term post-COVID headache and other post-COVID symptoms in hospitalised survivors. METHODS: A case-control study including patients hospitalised during the first wave of the pandemic in Spain was conducted. Patients reporting headache as a symptom during the acute phase and age- and sex-matched patients without headache during the acute phase participated. Hospitalisation and clinical data were collected from medical records. Patients were scheduled for a telephone interview 7 months after hospital discharge. Participants were asked about a list of post-COVID symptoms and were also invited to report any additional symptom they might have. Anxiety/depressive symptoms and sleep quality were assessed with the Hospital Anxiety and Depression Scale and the Pittsburgh Sleep Quality Index. RESULTS: Overall, 205 patients reporting headache and 410 patients without headache at hospitalisation were assessed 7.3 months (Standard Deviation 0.6) after hospital discharge. Patients with headache at onset presented a higher number of post-COVID symptoms (Incident Rate Ratio: 1.16, 95% CI: 1.03-1.30). Headache at onset was associated with a previous history of migraine (Odd Ratio: 2.90, 95% Confidence Interval: 1.41-5.98) and with the development of persistent tension-type like headache as a new post-COVID symptom (Odd Ratio: 2.65, 95% CI: 1.66-4.24). Fatigue as a long-term symptom was also more prevalent in patients with headache at onset (Odd Ratio: 1.55, 95% CI: 1.07-2.24). No between-group differences in the prevalence of anxiety/depressive symptoms or sleep quality were seen. CONCLUSION: Headache in the acute phase of SARS-CoV-2 infection was associated with higher prevalence of headache and fatigue as long-term post-COVID symptoms. Monitoring headache during the acute phase could help to identify patients at risk of developing long-term post-COVID symptoms, including post-COVID headache.

Female Gender Is Associated with a Higher Prevalence of Chronic Neck Pain, Chronic Low Back Pain, and Migraine: Results of the Spanish National Health Survey, 2017.

OBJECTIVES: To assess the prevalence of chronic neck pain (CNP), chronic low back pain (CLBP), and migraine headache (MH) in the Spanish population and to identify sociodemographic and health-related variables associated with CNP, CLBP, and MH. DESIGN: Observational study. SETTING: Spain. SUBJECTS: A total of 22,511 persons 18 years of age or older (10,304 males and 12,207 females) who participated in the 2017 Spanish National Health Survey. METHODS: Stratified three-stage sampling was applied. CNP, CLBP, and MH were the dependent variables. The analysis was conducted separately by gender. Sociodemographic features, self-perceived health status, lifestyle habits, comorbidities, and pain features were analyzed by using logistic regression models. RESULTS: Females reported a higher prevalence of CNP, CLBP, and MH (P < 0.001) than males. For both sexes, anxiety and/or depression and poor self-rated health were associated with a significantly increased prevalence of CNP, CLBP, and MH. For CNP and CLBP, the identified associated factors were older age and limitations to usual activity. For CNP and MH, the most common associated factor was comorbid respiratory disease. CONCLUSIONS: Our study identified several factors associated with CNP, CLBP, and MH in Spanish female and male adults, with potential implications for health care providers.

Deceased donor care provided by the nurse transplant coordinator: A qualitative research study among Spanish nurses.

AIM: The purpose of this study is to describe the experience of nursing care provided to the deceased organ donor by the nurse transplant coordinator. METHODS: A qualitative exploratory study was conducted within the National Transplant Organization and the Regional Office for Transplant Coordination. A purposive sampling method was used. Data collection methods included semistructured interviews. Sampling and data collection were pursued until the researchers achieved information redundancy. A systematic text condensation analysis was performed. The Guba and Lincoln criteria for guaranteeing trustworthiness were followed. RESULTS: A total of 16 participants were recruited, and three themes were identified regarding care of organ donors by the nurse transplant coordinator during the organ donation process: (a) fulfilling the desire and will of the donor patient; (b) the family as an extension of the donor; (c) coordinating the organ donation process. CONCLUSIONS: The donation process is both complex and delicate, and nursing care is an essential component. The care provided by the nurse transplant coordinator has the donor at the centre of the process, driven by respect for their decision. The family is seen as an extension of the donor. Nursing care should focus on continuous, honest communication, coordinating care with the intensive care unit, ensuring privacy and intimacy.

Attitudes towards multi-organ donation among intensive care unit nurses in transplant hospitals.

AIM: To evaluate the attitudes towards deceased multi-organ donation and transplantation among nurses within the critical care units of the six public tertiary transplant hospitals in Madrid, Spain. BACKGROUND: Spain has a rate of 49 donations per million population, whereas Madrid has a lower donation rate of 34.2 per million population. Nurses generate social opinion, and their attitude can be one of the barriers against organ donation. METHOD: An observational descriptive study was conducted among critical care units' nurses. The measuring instrument was the Collaborative International Donor Project in Organ Donation and Transplantation. Data were collected from January to October 2019, and a statistical analysis was performed. RESULTS: A total of n = 313 questionnaires achieved a response rate of 51%. Of the intensive care unit nurses surveyed, 85% had a favourable opinion towards the donation of their organs being affected by psychosocial variables related to social variables with respect to family, religion and attitude towards the body. CONCLUSION: The intensive care unit nurses of the Madrid transplant hospitals maintain a favourable attitude towards organ donation and transplantation. It is necessary to implement specialized training and periodically evaluate training in this sector. To maintain and improve the attitude towards organ donation, family discussion among health personnel should be encouraged. Religion influences the attitude of nurses and donation rates. IMPLICATION FOR NURSING AND HEALTH POLICY: Intensive care nurses' attitude towards organ donation is influenced by social variables. This study shows that the attitude is positive but improvable. These findings contribute to promote awareness of the lack of organs and the benefits of organ donation.

The Day My Life Changed: A Qualitative Study of the Experiences of Patients With New Daily Persistent Headache.

OBJECTIVES: This study aimed to explore the views and experiences of a group of Spanish patients suffering from new daily persistent headache (NDPH). METHODS: A qualitative descriptive study was conducted with patients diagnosed with NDPH. Purposeful sampling was performed among patients attending a specialized Headache Unit at 2 university hospitals between February 2017 and December 2018. In total, 18 patients (11 women, 7 men; mean age 45.3, standard deviation 10.6) with a median duration of illness of 70 months (interquartile range, 24-219) were recruited to this study. Data were collected through in-depth interviews, researchers' field notes and patients' drawings. Thematic analysis was used to identify emerging themes. RESULTS: Three main themes were identified: (1) the origin of the illness and seeking answers; (2) characteristics of the pain; and (3) the impact of pain on patients' lives. The patients precisely recalled the time of onset and the trigger of the pain. Pain was constantly present, although it varied in form. At the onset, pain was perceived as a sign of alarm while, over time, it became an invisible illness. The headache commonly had a major impact on everyday life and could cause lifestyle changes. In addition, pain could be emotionally disruptive and could also lead to family estrangement and a search for solitude. CONCLUSIONS: Our results provide insight into how NDPH is experienced, which may be helpful in managing NDPH patients. In our cohort, patients identified precipitating events but sought answers regarding the origin of their illness and their pain. Pain was a continuous sensation that had a major impact on patients' daily lives and emotions.

The Impact of a Novel Immersive Virtual Reality Technology Associated with Serious Games in Parkinson's Disease Patients on Upper Limb Rehabilitation: A Mixed Methods Intervention Study.

BACKGROUND: Parkinson's disease is a neurodegenerative disorder that causes impaired motor functions. Virtual reality technology may be recommended to optimize motor learning in a safe environment. The objective of this paper was to evaluate the effects of a novel immersive virtual reality technology used for serious games (Oculus Rift 2 plus leap motion controller-OR2-LMC) for upper limb outcomes (muscle strength, coordination, speed of movements, fine and gross dexterity). Another objective was to obtain qualitative data for participants' experiences related to the intervention. METHODS: A mixed methods intervention (embedded) study was used, with a qualitative design after a technology intervention (quantitative design). The intervention and qualitative design followed international guidelines and were integrated into the method and reporting subheadings. RESULTS: Significant improvements were observed in strength (p = 0.028), fine (p = 0.026 to 0.028) and gross coordination dexterity, and speed movements (p = 0.039) in the affected side, with excellent compliance (100%) and a high level of satisfaction (3.66 ± 0.18 points out of the maximum of 4). No adverse side effects were observed. Qualitative findings described patients' perspectives regarding OR2-LMC treatment, facilitators and barriers for adherence, OR2-LMC applications, and treatment improvements. CONCLUSIONS: The intervention showed positive results for the upper limbs, with elements of discordance, expansion, and confirmation between qualitative and quantitative results.