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Firearms are a leading cause of paediatric mortality in the United States. This study examines the contributing factors of racial disparity and disproportionality among paediatric firearm decedents aged 0-17 years.We used the National Violent Death Reporting System (NVDRS) to assess the individual and incident-level circumstances of paediatric firearm homicides from 2014 to 2018 in 17 US states.Among 1085 paediatric firearm homicides, non-Hispanic blacks (NHB) died at a rate three times greater than their proportion in the general population; they were nine times as likely to die by firearm homicide as non-Hispanic whites (NHW). NHW children were more often the victims of firearm homicide perpetrated by a parent/caregiver, and of homicide-suicides.Violence interruption programmes among NHB youth, and family-based interventions among NHW youth may be effective in preventing firearm homicide and homicide-suicide. Systematic investigations into firearm homicide perpetrators are necessary to better understand observed racial disparities.
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Armas de Fuego , Suicidio , Adolescente , Niño , Humanos , Estados Unidos/epidemiología , Homicidio , Causas de Muerte , Vigilancia de la Población , ViolenciaRESUMEN
PURPOSE: The purpose of this study was to assess decisions, attitudes, and understanding of participants (patients, parents, relatives) having genome sequencing for rare disease diagnosis. METHODS: This study involved a cross-sectional observational survey with participants in the 100,000 Genomes Project. RESULTS: Survey response rate was 51% (504/978). Most participants self-reported that they had decided to undergo genome sequencing (94%) and that this was an informed decision (84%) with low decisional conflict (95%). Most self-reported that they had chosen to receive additional findings (88%) and that this was an informed decision (89%) with low decisional conflict (95%). Participants were motivated more by the desire to help others via research than by the belief it would help them obtain a diagnosis (Z = 14.23, P = 5.75 × 10-46), although both motivations were high. Concerns were relatively few but, where expressed, were more about the potential psychological impact of results than data sharing/access (Z = 9.61, P = 7.65 × 10-22). Concerns were higher among male, Asian or Asian British, and more religious participants. General and context-specific understanding of genome sequencing were both moderately high (means 5.2/9.0 and 22.5/28.0, respectively). CONCLUSION: These findings are useful to inform consent guidelines and clinical implementation of genome sequencing.
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Actitud , Padres , Estudios Transversales , Toma de Decisiones , Humanos , Masculino , Motivación , Padres/psicología , Encuestas y CuestionariosRESUMEN
Primary mitochondrial disorders encompass a wide range of clinical presentations and a spectrum of severity. They currently lack effective disease-modifying therapies and have a high mortality and morbidity rate. It is therefore essential to know that competitively funded research designed by academics meets the core needs of people with mitochondrial disorders and their clinicians. Priority setting partnerships are an established collaborative methodology that brings patients, carers and families, charity representatives and clinicians together to try to establish the most pressing and unanswered research priorities for a particular disease. We developed a web-based questionnaire, requesting all patients affected by primary mitochondrial disease, their carers and clinicians to pose their research questions. This yielded 709 questions from 147 participants. These were grouped into overarching themes including basic biology, causation, health services, clinical management, social impacts, prognosis, prevention, symptoms, treatment and psychological impact. Following the removal of "answered questions", the process resulted in a list of 42 discrete, answerable questions. This was further refined by web-based ranking by the community to 24 questions. These were debated at a face-to-face workshop attended by a diverse range of patients, carers, charity representatives and clinicians to create a definitive "Top 10 of unanswered research questions for primary mitochondrial disorders". These Top 10 questions related to understanding biological processes, including triggers of disease onset, mechanisms underlying progression and reasons for differential symptoms between individuals with identical genetic mutations; new treatments; biomarker discovery; psychological support and optimal management of stroke-like episodes and fatigue.
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Investigación Biomédica , Enfermedades Mitocondriales , Cuidadores , Prioridades en Salud , Humanos , Enfermedades Mitocondriales/diagnóstico , Enfermedades Mitocondriales/genética , Enfermedades Mitocondriales/terapia , Encuestas y CuestionariosRESUMEN
BACKGROUND: Rare disease patients and carers report significant impacts on mental health but studies on UK populations have focussed on relatively few, specific conditions. Collectively rare conditions represent a substantial health burden, with an estimated 3.5 million affected individuals in the UK. METHOD: We explored the impact on mental health of living with a rare condition, and experiences of health service support, through an online survey. The survey assessed the impact of specific experiences commonly reported by those affected by a rare condition through multiple choice questions and Likert scale items, and open text question boxes. Through a multi-stakeholder workshop that involved facilitated discussion of our findings with patients/carers, clinicians and a government advisor, we developed recommendations for policy and practice toward a more person-centred and integrated approach. RESULTS: Eligible responses came from 1231 patients and 564 carers. Due to their rare condition, the majority of respondents (> 90%) had felt worried/anxious; stressed; and /or low/depressed. Thirty-six percent of patients and 19% of carers had had suicidal thoughts. Challenges that are particular to rare conditions and which negatively affect mental health included limited knowledge of the condition amongst healthcare professionals (88%), and not being believed or taken seriously by them. Only 23% of respondents felt healthcare professionals considered mental and physical health as equally important. Almost half reported never having been asked about mental health by healthcare professionals. Our findings indicate that access to, and appropriateness of, professional psychological support needs to be improved. Peer group support is important but signposting is inadequate. Our recommendations are for healthcare professionals to be supported to effectively and sensitively recognise and address patients' and carers' mental health needs; and for service level coordination of care to integrate professional psychological support with rare disease services. CONCLUSION: Living with a rare disease substantially impacts mental health. Many of the drivers of poor mental health reflect issues specific to managing rare conditions. To meet UK government commitments, there should be a focus on empowering healthcare professionals who treat rare disease patients and on integration of mental health support with rare disease services.
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Salud Mental , Enfermedades Raras , Cuidadores/psicología , Humanos , Enfermedades Raras/epidemiología , Enfermedades Raras/terapia , Encuestas y Cuestionarios , Reino UnidoRESUMEN
BACKGROUND: Child maltreatment causes substantial numbers of injuries and deaths, but not enough is known about social determinants of health (SDH) as risk factors. The aim of this study was to conduct a systematic review of the association of SDH with child maltreatment. METHODS: Five data sources (PubMed, Web of Science Core Collection, SCOPUS, JSTORE, and the Social Intervention Research and Evaluation Network Evidence Library) were searched for studies examining the following SDH: poverty, parental educational attainment, housing instability, food insecurity, uninsurance, access to healthcare, and transportation. Studies were selected and coded using the PICOS statement. RESULTS: The search identified 3441 studies; 33 were included in the final database. All SDH categories were significantly associated with child maltreatment, except that there were no studies on transportation or healthcare. The greatest number of studies were found for poverty (n = 29), followed by housing instability (13), parental educational attainment (8), food insecurity (1), and uninsurance (1). CONCLUSIONS: SDH, including poverty, parental educational attainment, housing instability, food insecurity, and uninsurance, are associated with child maltreatment. These findings suggest an urgent priority should be routinely screening families for SDH, with referrals to appropriate services, a process that could have the potential to prevent both child maltreatment and subsequent recidivism. IMPACT: SDH, including poverty, parental educational attainment, housing instability, food insecurity, and uninsurance, are associated with child maltreatment. No prior published systematic review, to our knowledge, has examined the spectrum of SDH with respect to their associations with child maltreatment. These findings suggest an urgent priority should be routinely screening families for SDH, with referrals to appropriate services, a process that could have the potential to prevent both child maltreatment and subsequent recidivism.
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Maltrato a los Niños , Salud Infantil , Determinantes Sociales de la Salud , Factores Socioeconómicos , Niño , Maltrato a los Niños/mortalidad , Maltrato a los Niños/prevención & control , Escolaridad , Inseguridad Alimentaria , Accesibilidad a los Servicios de Salud , Disparidades en el Estado de Salud , Disparidades en Atención de Salud , Inestabilidad de Vivienda , Humanos , Pacientes no Asegurados , Padres , Pobreza , Medición de Riesgo , Factores de Riesgo , TransportesRESUMEN
OBJECTIVES: The purpose of this study is to determine how individual and contextual factors that contribute to homicide-suicide (HS) differ between young adults, middle-aged adults, and older adults, and to describe, in detail, the circumstances that lead to HS by older adults. METHODS: Data were obtained from the Center for Disease Control and Prevention (CDC) National Violent Death Reporting System. We used a sequential mixed methods approach to the analysis. Guided by the Marzuk HS framework, we conducted quantitative analyses to identify characteristics distinguishing older adult HS perpetrators from younger HS perpetrators. These results guided the qualitative content analysis, which further described the circumstances surrounding HS incidents perpetrated by older adults. RESULTS: While HS perpetrated by young and middle-aged adults were quite similar, the demographic characteristics, victim-perpetrator relationship, and contributing factors in HS incidents perpetrated by older adults were substantially different. Mental health and depressed mood were more common among older adult perpetrators, and jealousy, fights, and substance use issues were less common, relative to younger perpetrators. Escalating intimate partner violence and caregiving/health-related issues, including caregiving strain, housing transitions, and financial problems, were the primary contributors to older adult HS. CONCLUSION: HS perpetrated by older adults was both similar and different from incidents perpetrated by younger adults. Programs that prevent or de-escalate intimate partner violence would likely prevent many HS incidents perpetrated by older adults, but health and aging-related issues must also be considered.
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Homicidio , Suicidio , Anciano , Humanos , Longevidad , Salud Mental , Persona de Mediana Edad , Distribución por SexoRESUMEN
To examine the prevalence of adverse family experiences (AFEs), their association with poor school engagement and performance, and whether behavioral health conditions mediate the association among US adolescents. We conducted a cross-sectional analysis of data from adolescents aged 12-17 years from the 2016-2018 National Survey of Children's Health (n = 41,648 unweighted). We first estimated the prevalence of AFEs, investigated the association of AFEs with school engagement and performance, and whether behavioral health conditions mediate such relationships, using multivariable-adjusted Poisson regression models. A mediation analysis was used and covariates included socio-demographic characteristics and co-morbid medical conditions. A total of 52.9% of US adolescents (nationally representative of 12.9 million adolescents nationwide) reported experiencing at least one form of AFE, the most common of which included parental divorce/separation (33.1%), economic hardship (22.0%) and living with a person with substance misuse problems (11.5%). Adolescents with ≥4 AFEs had poorer outcomes in school engagement and performance (p < 0.001 each) when compared to those with no AFEs. Behavioral health conditions (e.g., anxiety, depression, and conduct problems) partially mediated these relationships (p < 0.01 each). The indirect effect of behavioral health conditions accounted for 20.4% of the total effect in the association between AFEs and school performance (p < 0.001). AFEs are common among US adolescents, and cumulative AFEs are associated with behavioral health conditions, which may in turn reduce school engagement and performance. While reducing AFEs is important in children and adolescents, addressing potentially resultant behavioral health conditions is equally important in improving school engagement and performance.
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Trastornos de Ansiedad , Instituciones Académicas , Adolescente , Niño , Estudios Transversales , Humanos , PrevalenciaRESUMEN
BACKGROUND: Child maltreatment is poorly documented in clinical data. The International Classification of Diseases and Related Health Problems, 10th Revision, Clinical Modification (ICD-10-CM) represents the first time that confirmed and suspected child maltreatment can be distinguished in medical coding. The utility of this distinction in practice remains unknown. This study aims to evaluate the application of these codes by patient demographic characteristics and injury type. METHODS: We conducted secondary data analysis of emergency department (ED) discharge records of children under 18 years with an ICD-10-CM code for confirmed (T74) or suspected (T76) child maltreatment. Child age, sex, race/ethnicity, insurance status and co-occurring injuries (S00-T88) were compared by maltreatment type (confirmed or suspected). RESULTS: From 2016 to 2018, child maltreatment was documented in 1650 unique ED visits, or 21.7 per 10 000 child ED visits. Suspected maltreatment was documented most frequently (58%). Half of all maltreatment-related visits involved sexual abuse, most often in females and individuals of non-Hispanic white race. Physical abuse was coded in 36% of visits; injuries to the head were predominant. Non-Hispanic black children were more frequently documented with confirmed physical abuse than suspected (38.7% vs 23.7%, p<0.01). The rate of co-occurring injuries documented with confirmed and suspected maltreatment differed by 30% (9.2 vs 12.5 per 10 000 ED visits, respectively). CONCLUSIONS: The ability to discriminate confirmed and suspected maltreatment may help mitigate clinical barriers to maltreatment surveillance associated with delayed diagnosis and subsequent intervention. Racial disparities in suspected and confirmed cases were identified which may indicate biased diagnostic behaviours in the ED.
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BACKGROUND: Child sexual abuse (CSA) is poorly identified due to its hidden nature and difficulty surrounding disclosure. Surveillance using emergency department (ED) data may identify victims and provide information on their demographic profile. OBJECTIVES: Study aims were to calculate the prevalence of visits assigned an explicit or suggestive medical diagnosis code (International Classification of Diseases, Ninth Revision, Clinical Modification [ICD-9-CM]) for CSA and compare the demographic profile of ED visits by coding type. METHODS: This study examined ED data for children < 10 years of age in Connecticut from 2011 to 2014. Cases involving CSA were identified using explicit and suggestive ICD-9-CM codes and age qualifiers previously established in the literature, and compared across visit characteristics (age, race/ethnicity, sex, and primary insurance payer, and town group). RESULTS: ICD-9-CM codes for explicit CSA were identified in 110 ED visits, or 1.7 per 10,000 total ED visits. Inclusion of ICD-9-CM codes for suggestive CSA identified an additional 630 visits (9.7 per 10,000 visits). Suggestive codes identified proportionally more visits of younger (50% vs. 38%) and male (35% vs. 22%) children, compared with the explicit code (p < 0.05). CONCLUSIONS: This study demonstrates one method for identifying CSA cases, which has the potential to increase surveillance of victims in the ED. Results imply that explicit codes alone may overlook most cases, whereas use of suggestive codes may identify additional cases, and proportionally more young and male victims. As the health consequences of CSA are severe, innovative forms of surveillance must be explored to detect a higher number of cases and improve the clinical care of patients.
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Abuso Sexual Infantil/diagnóstico , Servicio de Urgencia en Hospital/estadística & datos numéricos , Niño , Abuso Sexual Infantil/estadística & datos numéricos , Preescolar , Connecticut , Servicio de Urgencia en Hospital/organización & administración , Femenino , Humanos , Lactante , Clasificación Internacional de Enfermedades , Masculino , PrevalenciaRESUMEN
The focus of this article is an innovative approach to teaching gerontology by utilizing a collaborative approach to structuring clinical experiences. The goal was to better prepare future nurses for the growing epidemic of baby boomers. Faculty were challenged to rethink clinical education and design a new method to better prepare nursing students to care for older adults.
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Bachillerato en Enfermería , Educación en Enfermería , Geriatría , Estudiantes de Enfermería , Anciano , Curriculum , Geriatría/educación , HumanosRESUMEN
Research into adrenal insufficiency (AI) and congenital adrenal hyperplasia (CAH) in children has focused largely on clinical consequences for patients; and until recently, the wider experience of the condition from the perspective of other family members has been neglected. In a mixed methods study, we captured the experiences of parents of young children affected by AI/CAH, including their views on the psychosocial impact of living with and managing the condition. Semi-structured interviews were carried out in the UK and an online survey was developed, translated and disseminated through support groups (UK and the Netherlands) and outpatient endocrinology clinics (Germany). Challenges associated with diagnosis, treatment, support and the future were identified. For UK parents, the diagnosis period was characterised by a lack of awareness amongst healthcare professionals and occurrences of adrenal crisis. Parents reported burden, anxiety and disruption associated with the intensive treatment regimen. Parents adjusted and gained confidence over time yet found delegating responsibility for medication difficult and worried about the future for their child. Access to psychological support and contact with other families was reported as highly beneficial. The findings of the study provide critical context for future studies and for informing how parents and families can be better supported. Prenatal genetic counselling for parents who already have an affected child will include an explanation of recurrence risk but should also focus on providing information and reassurance about diagnostic testing and care for their newborn.
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Hiperplasia Suprarrenal Congénita , Insuficiencia Suprarrenal , Padres/psicología , Hiperplasia Suprarrenal Congénita/enfermería , Insuficiencia Suprarrenal/enfermería , Adulto , Niño , Preescolar , Femenino , Humanos , Lactante , Masculino , Investigación Cualitativa , Encuestas y CuestionariosRESUMEN
Evidence from both human and animal studies indicates that rapid eye movement sleep (REM) is essential for the acquisition and retention of information, particularly of an emotional nature. Learning and memory can also be impacted by manipulation of housing condition such as exposure to an enriched environment (EE). This study investigated the effects of REM deprivation and EE, both separately and combined, on the extinction of conditioned fear in rats. Consistent with prior studies, conditioning was enhanced in EE-reared rats and extinction was impaired in REM deprived rats. In addition, rats exposed to both REM deprivation and EE showed the greatest impairment in extinction, with effects persisting through the first two days of extinction training. This study is the first to explore the combination of REM deprivation and EE and suggests that manipulations that alter sleep, particularly REM, can have persisting deleterious effects on emotional memory processing.
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Ambiente , Extinción Psicológica/fisiología , Miedo/fisiología , Sueño REM , Animales , Condicionamiento Clásico , Masculino , Ratas , Ratas Sprague-Dawley , Privación de SueñoRESUMEN
The 7th Amendment to the EU Cosmetics Directive and the EU REACH Regulation have reinforced the need for in vitro ocular test methods. Validated in vitro ocular toxicity tests that can predict the human response to chemicals, cosmetics and other consumer products are required for the safety assessment of materials that intentionally, or inadvertently, come into contact with the eye. The EpiOcular Eye Irritation Test (EIT), which uses the normal human cell-based EpiOcular™ tissue model, was developed to address this need. The EpiOcular-EIT is able to discriminate, with high sensitivity and accuracy, between ocular irritant/corrosive materials and those that require no labelling. Although the original EpiOcular-EIT protocol was successfully pre-validated in an international, multicentre study sponsored by COLIPA (the predecessor to Cosmetics Europe), data from two larger studies (the EURL ECVAM-COLIPA validation study and an independent in-house validation at BASF SE) resulted in a sensitivity for the protocol for solids that was below the acceptance criteria set by the Validation Management Group (VMG) for eye irritation, and indicated the need for improvement of the assay's sensitivity for solids. By increasing the exposure time for solid materials from 90 minutes to 6 hours, the optimised EpiOcular-EIT protocol achieved 100% sensitivity, 68.4% specificity and 84.6% accuracy, thereby meeting all the acceptance criteria set by the VMG. In addition, to satisfy the needs of Japan and the Pacific region, the EpiOcular-EIT method was evaluated for its performance after extended shipment and storage of the tissues (4-5 days), and it was confirmed that the assay performs with similar levels of sensitivity, specificity and reproducibility in these circumstances.
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Ojo/efectos de los fármacos , Irritantes/toxicidad , Pruebas de Toxicidad/métodos , Alternativas a las Pruebas en Animales , HumanosRESUMEN
Both human and animal research indicate that rapid eye movement sleep (REM) plays an important role in the processing of emotional information. REM is altered after fear conditioning in rats, but this alteration can be mitigated by exposure to a naïve conspecific. In addition, both the housing condition (isolated vs paired) and the experiences of rats' cagemates can influence the response to aversive events. Based on this prior work, the present study sought to determine the effects of social housing on the previously demonstrated impairment in the extinction of conditioned fear responses produced by REM deprivation. Rats were assigned to one of three housing conditions: housed with a naïve rat, housed with another fear-conditioned rat, or housed alone. The results demonstrated that rats housed with either a naïve or a fear-conditioned conspecific exhibited an impairment in the acquisition of extinction as a consequence of REM deprivation, as observed in previous studies. However, rats in the isolated condition demonstrated a trend toward an impairment only after continued extinction training. These results indicate that the effects of social housing on REM deprivation-induced impairments in learning and memory are subtle, but may explain some conflicting findings in the literature.
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Condicionamiento Psicológico/fisiología , Extinción Psicológica/fisiología , Miedo , Privación de Sueño/fisiopatología , Sueño REM/fisiología , Conducta Social , Análisis de Varianza , Animales , Reacción Cataléptica de Congelación/fisiología , Masculino , Ratas , Ratas Sprague-DawleyRESUMEN
Suicide is a leading cause of death in the United States (U.S.), with firearms being the predominant method. This study examines the racial disparity and disproportionality of pediatric firearm suicide from 2014 to 2018 in 17 U.S. states. We used the National Violent Death Reporting System to quantify the burden of pediatric firearm suicide by race/ethnicity and gender and assessed themes among decedents aged 10 to 17 years. Racial disparity and disproportionality were measured using the Disparity Index and Disproportionality Representation Index, respectively. Decedents were primarily non-Hispanic White (NHW, 77.5%) and male (84.0%). NHW children died at a rate that was 1.3 times greater than expected based on their proportion in the general population and were 2.6 times more likely to die by firearm suicide than non-Hispanic Black (NHB) children. NHB children were less likely to disclose suicide intention, suggesting that this group may require more active screening intervention. Qualitative analysis revealed unsafe firearm storage as a common theme among these deaths. Differences in age with respect to social media use and precipitating factors such as bullying and arguments with parents were also identified as contributing factors. Results of this study support the expansion of interventions such as lethal means restriction counseling and implementation of safer firearm storage laws.
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Armas de Fuego , Suicidio , Adolescente , Niño , Femenino , Humanos , Masculino , Armas de Fuego/estadística & datos numéricos , Suicidio/estadística & datos numéricos , Estados Unidos , Población Blanca/estadística & datos numéricos , Negro o AfroamericanoRESUMEN
BACKGROUND: Although individually rare, collectively, rare conditions are common and affect a large number of people and are often chronic, life threatening and affect multiple body systems; the majority of them have no effective treatment. The literature has identified many specific challenges for those living with rare conditions, however, we do not know which of these in combination are most likely to impact how someone rates their overall experience of care. The aim of this study is to do further exploratory analysis of the Genetic Alliance UK 2020 Rare Experience survey data to identify which variables are most strongly associated with respondents' overall care experience. RESULTS: There were strong associations between most of the selected survey variables and the overall rated experience of care variable. In the multiple linear regression only nine variables remained in the best fit model: 'Trust and confidence in hospital staff involved in ongoing care'; 'Satisfaction with information provided by healthcare professionals-following diagnosis'; 'The professionals providing care work as a team'; 'Feel care is coordinated effectively'; 'The timing and frequency of appointments are convenient for the patient/carer/family'; 'Whether or not there is a specific healthcare professional to ask questions of about the rare/undiagnosed condition'; 'Experience of searching for a diagnosis'; 'Knowledge of whether there is a specialist centre for the condition'; and 'Number of different clinics attend for the condition'. CONCLUSIONS: Our findings indicate the challenges that play the largest part in explaining the varied experiences with rare disease healthcare in the UK for our survey respondents. These challenges should be further investigated with a broader sample of people affected by rare conditions, ideally through the implementation of a comprehensive national rare condition patient registry. Our findings highlight an important potential gap in the Framework, 'trust and confidence in healthcare professionals'; further research is required to fully understand the foundations of trust and confidence.
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Atención a la Salud , Enfermedades Raras , Humanos , Encuestas y Cuestionarios , Evaluación del Resultado de la Atención al Paciente , Reino UnidoRESUMEN
This review was designed to (1) determine the extent to which the clinical science on sport-related concussion treatment and rehabilitation has considered social determinants of health (SDoH) or health equity and (2) offer recommendations to enhance the incorporation of SDoH and health equity in concussion treatment research and clinical care. The Concussion in Sport Group consensus statement (2023) was informed by two systematic reviews examining prescribed rest or exercise following concussion and targeted interventions to facilitate concussion recovery. We examined 31 studies, including 2,698 participants, from those two reviews. Race (k = 6; 19.4%) and ethnicity (k = 4; 12.9%) of the study samples were usually not reported. Four studies examined ethnicity (i.e., Hispanic), exclusively as a demographic category. Five studies (16.1%) examined race as a demographic category. Three studies (9.7%) examined socioeconomic status (SES; measured as household income) as a demographic category/sample descriptor and one study (3.2%) examined SES in-depth, by testing whether the treatment and control groups differed by SES. Five studies examined an SDoH domain in a descriptive manner and four studies in an inferential/intentional manner. No study mentioned SDoH, health equity, or disparities by name. Many studies (61.3%) excluded participants based on demographic, sociocultural, or health factors, primarily due to language proficiency. The new consensus statement includes recommendations for concussion treatment and rehabilitation that rely on an evidence base that has not included SDoH or studies addressing health equity. Researchers are encouraged to design treatment and rehabilitation studies that focus specifically on underrepresented groups to determine if they have specific and unique treatment and rehabilitation needs, whether certain practical modifications to treatment protocols might be necessary, and whether completion rates and treatment adherence and response are similar.
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Timely diagnosis is one of the most serious challenges faced by people living with a rare disease (PLWRD), and this study estimates that in Europe, the average total diagnosis time (TDT) is close to 5 years. We investigated the duration of the TDT for PLWRD in Europe, the difficulties associated with their diagnosis odyssey and the main determinants of diagnosis delays for all rare diseases (RD). We conducted a survey of PLWRD and their families using Rare Barometer, the survey initiative of EURORDIS-Rare Diseases Europe. In geographical Europe, we surveyed 6507 people living with 1675 RD in 41 countries. We then performed a descriptive analysis and ordinal logistic regressions to identify the main determinants of diagnosis delays. Average TDT is 4.7 years. 56% of respondents were diagnosed more than 6 months after a first medical contact. The main determinants of diagnosis delays are symptom onset before 30 years of age, especially during childhood (OR = 3.11; 95% CI: 2.4-4.0) and adolescence (OR = 4.79; 95% CI: 3.7-6.2), being a woman (OR = 1.22; 95% CI:1.1-1.4), living in Northern Europe (OR = 2.15; 95% CI:1.8-2.6) or Western Europe (OR = 1.96; 95% CI:1.6-2.3), the number of healthcare professionals consulted (OR = 5.15; 95% CI:4.1-6.4), misdiagnosis (OR = 2.48; 95% CI:2.1-2.9), referral to a centre of expertise (OR = 1.17; 95% CI:1.0-1.3), unmet needs for psychological support (OR = 1.34; 95% CI:1.2-1.5) and financial support (OR = 1.16; 95% CI:1.0-1.3), having a genetic disease (OR = 1.33; 95% CI:1.1-1.5) and a family history of an RD (OR = 1.36; 95% CI:1.1-1.6). These determinants can inform policies and actions to improve access to diagnosis for all PLWRD.
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Professional caring is the essence of nursing practice. Reflection on personal assumptions and beliefs challenge stereotypic views that influence professional caring and nursing care. An innovative educational pedagogy known as service learning creates an opportunity for students to reflect on self in the context of service to others; it is through this pedagogy that personal assumptions and beliefs are challenged as students become registered nurses. A qualitative descriptive study engaged undergraduate first and second year nursing students through interviews and reflections. The purposes of this study were to describe students' perception of self and caring in service learning, any changes in the perceptions of self over time, and the connection of self to others. Results identified three major themes: understanding self, becoming a nurse and learning to care with increasing depth over the two years. Implications for nursing curriculum and further research are discussed.
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Bachillerato en Enfermería , Rol de la Enfermera/psicología , Relaciones Enfermero-Paciente , Aprendizaje Basado en Problemas , Autoimagen , Adulto , Actitud del Personal de Salud , Cultura , Curriculum , Femenino , Humanos , Intención , Masculino , Teoría de Enfermería , Ontario , Bienestar Social , Estereotipo , Adulto JovenRESUMEN
Music-based interventions are not physically invasive, they usually have minimal side effects, and they are increasingly being implemented during the birthing process for pain and anxiety relief. The aim of this systematic review is to summarise and evaluate published, randomised controlled trials (RCTs) assessing the effects of music-based interventions for pain and anxiety management during vaginal labour and caesarean delivery. Following the PRISMA guidelines, a systematic search of the literature was conducted using: PsychInfo (Ovid), PubMed, and Web of Science. Studies were included in the review if they were RCTs that assessed the effects of music on pain and anxiety during vaginal and caesarean delivery by human mothers. A narrative synthesis was conducted on 28 identified studies with a total of 2835 participants. Most, but not all, of the included studies assessing music-based interventions resulted in reduced anxiety and pain during vaginal and caesarean delivery. Music as part of a comprehensive treatment strategy, participant-selected music, music coupled with another therapy, and relaxing/instrumental music was specifically useful for reducing light to moderate pain and anxiety. Music-based interventions show promising effects in mitigating pain and anxiety in women during labour. However, the long-term effects of these interventions are unclear.