Conectar
Recent advances in treatment and care have improved survival rates for children and young adults with severe blood disorders such as sickle cell disease (SCD), transfusion-dependent beta-thalassaemia (TDT) and acute leukaemia. However, their quality of life and reproductive and psychosocial outcomes are not yet well studied. For SCD and TDT, robust survival data are mainly limited to North America. Thus, there is a need to fill these knowledge gaps to guide improvements in care, address unmet clinical needs and rigorously assess the efficacy of emerging novel therapies.
This is an observational population-based mixed-methods study of individuals diagnosed with SCD, TDT or acute leukaemia when under the age of 18 in England, involving a data linkage component and a patient-reported outcomes measures survey. Data linkage-eligible participants will be identified from national and regional databases, including the Hospital Episode Statistics, Yorkshire Specialist Register of Cancer in Children & Young People and the National Congenital Anomaly and Rare Diseases Registration Service. Data linkage will be processed within the NHS England and the University of Leeds’ secure, trusted research environments. Data will be accessed without consent under section 251 and approval by the confidentiality advisory group. It will assess survival rates for SCD and TDT as well as clinical, educational and mental health outcomes for SCD, TDT and acute leukaemia diagnosed in childhood.
Survey-eligible participants for SCD, TDT and acute leukaemia cohorts will be checked for their suitability to participate by the North of England clinical care teams. An NHS-approved survey provider will facilitate data checks with the NHS National Data Opt-Out Service. Consent is required for participation in the survey and for subsequent data linkage to existing databases. Surveys are conducted in various formats (online, paper and phone), with reminders sent after 21 days. The survey will assess quality of life and psychosocial and reproductive outcomes. Participants can withdraw at any time, and support is available via telephone helplines.
The study has received ethical and information governance approval from the Health Research Authority (Reference 24/YH/0186) and the Confidentiality Advisory Group (CAG 24/CAG/0138) to process identifiable data without consent. Study results will be available to patients, physicians, researchers, stakeholders and others through open-access publishing, results sharing via media platforms and presentations at conferences and meetings.
To investigate specialist nurses' experience of psychological safety in ad hoc teams during emergency care.
Interpretive descriptive qualitative study.
Semi-structured interviews with nine specialist nurses were conducted in Sweden from May to June 2024 and analysed using reflexive thematic analysis (Braun & Clarke).
Four themes were identified: Interpersonal skills: implications for psychological safety; Individuality and team dynamics; Confidence, competence and collaboration; and Organisational responsibility for promoting psychological safety.
Psychological safety in ad hoc emergency care teams is a fragile and multifaceted phenomenon, shaped by interpersonal skills, leadership and organisational culture. Supportive environments characterised by open communication and proactive leadership enable specialist nurses to collaborate confidently and safely, even under acute stress. Targeted efforts to strengthen these factors are essential for optimising teamwork and patient outcomes.
The psychological safety implications for specialist nurses in ad hoc teams during emergency care are profound. Psychological safety fosters an environment that empowers nurses to leverage clinical expertise, collaborate in ad hoc teams and improve patient outcomes. Promoting psychological safety ensures specialist nurses feel respected, valued and secure, leading to better care and a more resilient workforce.
This qualitative study investigated specialist nurses' experience of psychological safety in ad hoc teams in acute care. The results will influence the awareness of nurses, specialist nurses, other professions, managers and organisations about the importance of feeling psychologically safe.
Presentation follows COREQ 32-item checklist.
No patient or public involvement.
Shows that psychological safety helps nurses perform in ad hoc emergency teams. Identifies key factors that affect teamwork and patient care.
by Patrick Kwizera, Richard Migisha, Hannington Katumba, Esther Nabatta, Samuel Gidudu, Benon Kwesiga, Job Morukileng, Lilian Bulage, Alex Riolexus Ario
BackgroundAnthrax is a zoonotic disease that remains endemic in Uganda, particularly in cattle-keeping areas. On December 28, 2023, the first suspected human case of anthrax was detected in Amudat District. We investigated to determine the outbreak’s magnitude, identify risk factors, and recommend prevention and control measures.
MethodsWe defined a suspected cutaneous anthrax case as acute onset of ≥2 of the following: skin lesions (papule, vesicle, or eschar) on exposed areas such as the hands, forearms, shoulders, back, thighs or face, localized itching, redness, swelling, or regional lymphadenopathy, in Amudat residents from December 2023–June 2024.A confirmed case was a suspected case with PCR-positive test for Bacillus anthracis. In unmatched case-control study (1:3 ratio), we compared exposures among 40 cases and 120 controls. We identified cases through house-to-house search, medical record reviews, and snowballing among case-persons. Human and animal samples were collected and tested, alongside an environmental assessment. We used multivariable logistic regression to identify associated risk factors.
ResultsWe identified 102 cutaneous anthrax cases, including 7 confirmed cases; none died. The outbreak lasted 7 months, peaking in March 2024, with an overall attack rate of 169/100,000 (males: 196/100,000; females: 138/100,000). Use of cattle hides as bedding (OR=12; 95% CI:2.7–52) and butchering cattle carcasses (OR=6; 95% CI:1.8–19) were significantly associated with anthrax. The highest infection risk was observed among individuals with multiple exposures: butchered only (OR = 6.9, 95% CI:2.6–18), butchered and carried cattle parts (OR = 11, 95% CI:1.2–96), butchered and skinned (OR = 14, 95% CI:3.5–56), and butchered, carried, and skinned (OR = 17, 95% CI:1.6–219). No livestock had been vaccinated prior to the outbreak.
ConclusionThe outbreak was associated to use of cattle hides as bedding and the butchering of cattle carcasses. We recommended community education, livestock vaccination, and safe carcass handling to prevent future outbreaks.
This study explored perceptions of older adults racialised as Black on structural resilience across the life course.
A qualitative descriptive study.
Using purposive sampling, we recruited 15 Black adults aged 50 and older residing in Baltimore, Maryland, including individuals possessing historical or current knowledge of the community. Semi-structured interviews were conducted to elicit participants' experiences with structural resources during childhood, adulthood and late adulthood. Interviews were audio-recorded, transcribed verbatim and analysed using content analysis.
Of the 15 participants, three identified as male (20.0%) and 12 as female (80.0%), with an average age of 70.9 ± 8.2 years. The analysis identified nine categories of structural resilience, confirming its multifaceted and dynamic nature. Common categories present across all life stages included: Built environment, civic engagement, food and housing, healthcare, and social capital and cohesion. Life stage–specific categories included child and family services, educational supports, and workforce development supports during childhood and adulthood, and financial support during adulthood and late adulthood.
These categories were interdependent and spanned across life stages, illustrating the dynamic, cumulative and relational qualities of structural resilience. Furthermore, structural resources were identified as key to safeguarding, empowering and restorative responses to adversity.
These findings contribute to the development of a nuanced, life course–informed framework of structural resilience and highlight the need for ecological strategies that address structural forces shaping health and well-being, particularly among older adults racialised as Black.
This study was reported in accordance with the Consolidated Criteria for Reporting Qualitative Research checklist.
No patient or public contribution.
Low-income adults with disabilities experience disproportionately high rates of food insecurity and preventable healthcare utilisation. The Supplemental Nutrition Assistance Program (SNAP) can reduce food insecurity and improve health, but there are accessibility gaps in the SNAP enrolment process. Existing outreach and enrolment assistance programmes have been shown to boost SNAP enrolment, but their health effects are understudied. This study estimates the effects of a SNAP outreach and enrolment assistance programme on health outcomes among low-income adults with disabilities.
The study pragmatically evaluates a programme that provided outreach and SNAP enrolment assistance for low-income households. The study leverages a random process that selected households for one of two types of outreach, including an information-only arm and an information plus enrolment assistance arm, which formed a control group by default. The study will estimate the effect of this programme among low-income adults with disabilities using Medicaid and SNAP administrative data. Study outcomes include emergency department, hospital and long-term nursing home utilisation. SNAP enrolment and benefit amounts are secondary study outcomes and will be tested as a mediating mechanism of action. The study will test effect heterogeneity based on race, ethnicity, age and chronic conditions.
The study, which relies on deidentified data, was determined to be exempt as human subjects research by the Institutional Review Boards at Johns Hopkins Medicine and the Michigan Department of Health and Human Services. The study is being conducted in ongoing consultation with an Advisory Group of experts in food advocacy and disability advocacy. In addition to disseminating findings in peer-reviewed publications, findings will be disseminated to state decision-makers and the community in partnership with an advisory group.
To explore the lived experiences of intensive care nurses caring for patients with limited English proficiency.
A hermeneutic, interpretive phenomenological design was used.
Semi-structured interviews were conducted with intensive care nurses recruited through purposive sampling. Data collection included Qualtrics screening surveys and semi-structured Zoom interviews. The research team, comprising linguistically diverse faculty and undergraduate research assistants, employed reflexivity techniques to minimise bias and enhance interpretive rigour. Data were analysed via inductive analysis using the hermeneutic circle.
Five main themes emerged organically from the data: Complications of Care Relating to Verbal Communication Challenges. Benefits and Barriers of Nursing Informatics in Linguistic Care. The Universal Language: Nursing Effort Builds Trust. The Ripple Effect: Chronological Considerations for Patient Care. Moving Forward: Where Do We Go From Here?
Based on these findings, a four-phase model was developed to guide individual and system-level interventions to reduce nurse moral distress and improve language equity in critical care.
Language barriers in the intensive care unit hinder communication, increase stress for patients and nurses, and impact care quality. While nurses' efforts to bridge these gaps are valued, systemic changes (such as expanded interpreter availability and improved cultural safety training) are necessary to support culturally, linguistically, and medically appropriate care.
Findings highlight the need for increased institutional support, additional resources for night-shift staff, and the integration of cultural humility education into intensive care training. The Limited English Proficiency Moral Distress Action Cycle for Critical Care Nursing, developed from this study, offers a flexible framework to guide the implementation of these improvements and reduce nurse moral distress. Future research should explore interventions to promote cultural and linguistic competence in multilingual patient populations.
Q: What problem did the study address?
A: The nurse-identified clinical, ethical, and workflow risks created when interpreters or translation tools are inadequate for critical care.
Q: What were the main findings?
A: Language barriers jeopardise teaching, informed consent, and symptom reporting. Video and phone interpreters or translation apps are vital but are often scarce, unreliable, or impersonal, particularly during night shifts. Nurses bridge these gaps by building trust through empathy, non-verbal communication, and learning key phrases. Yet, effective care for patients with limited English proficiency requires extra time, increasing workloads and fuelling moral distress related to language-discordant care. Nurses consistently called for 24/7 interpreter coverage; more reliable devices and cultural humility training must be implemented system-wide.
Q: Where and on whom will the research have an impact?
A: Findings can guide nurses, managers, leaders, and administrators to improve both language concordant and discordant nursing care and train nurses in cultural and linguistic competencies for a multilingual patient population. Ultimately, these efforts have been shown to improve the quality, outcomes, and cost-effectiveness of patient care. The study also identifies moral-distress triggers and introduces the Limited English Proficiency Moral Distress Action Cycle (LEP-MDAC). This model is proposed for use in other high-acuity settings worldwide that seek to provide language-concordant or language-discordant care effectively.
SRQR.
None.
We explored the experiences of treatment strategies for steroid-sensitive nephrotic syndrome (SSNS) and care priorities among children living with the condition and their caregivers.
A qualitative study using semistructured interviews. Data were analysed using reflexive thematic analysis. We coded transcripts in duplicate and developed themes that integrate key concepts across roles.
Southern Alberta, Canada.
A purposive sample of children aged 8–18 years, with SSNS and their caregivers from a paediatric nephrotic syndrome cohort.
28 individuals (10 children and 18 caregivers) participated in this study. All had experienced a relapse after initial diagnosis and steroid treatment. Participants identified how their experiences with SSNS treatments influenced their willingness to accept further steroids and other second-line agents. Findings are elaborated across the following four themes: (1) reluctant acceptance of steroids (steroid aversion, lack of personalised steroid dosing, altered self-regulation and acknowledging steroid effectiveness); (2) coping with unexpected relapses (repeating the cycle, restricted life participation and tempered optimism); (3) uncertainty about second-line therapies (striving for stability, cumulative burden of adverse effects and exploring alternatives) and (4) directing attention to unmet treatment needs and priorities (mechanistic approaches to therapy, steroid minimisation, child and family involvement and enhanced social supports).
Children with SSNS and their caregivers expressed a dislike of steroids and a desire for individualised treatment protocols. Investigation into therapeutic alternatives for SSNS should integrate patients’ preferences, values and care priorities.
FreshRSS 