Rapid genomic sequencing (rGS) in critically ill infants with suspected genetic disorders has high diagnostic and clinical utility. However, rGS has primarily been available at large referral centres with the resources and expertise to offer state-of-the-art genomic care. Critically ill infants from racial and ethnic minority and/or low-income populations disproportionately receive care in safety-net and/or community settings lacking access to state-of-the-art genomic care, contributing to unacceptable health equity gaps. VIrtual GenOme CenteR is a ‘proof-of-concept’ implementation science study of an innovative delivery model for genomic care in safety-net neonatal intensive care units (NICUs).
We developed a virtual genome centre at a referral centre to remotely support safety-net NICU sites predominantly serving racial and ethnic minority and/or low-income populations and have limited to no access to rGS. Neonatal providers at each site receive basic education about genomic medicine from the study team and identify eligible infants. The study team enrols eligible infants (goal n of 250) and their parents and follows families for 12 months. Enrolled infants receive rGS, the study team creates clinical interpretive reports to guide neonatal providers on interpreting results, and neonatal providers return results to families. Data is collected via (1) medical record abstraction, (2) surveys, interviews and focus groups with neonatal providers and (3) surveys and interviews with families. We aim to examine comprehensive implementation outcomes based on the Proctor Implementation Framework using a mixed methods approach.
This study is approved by the institutional review board of Boston Children’s Hospital (IRB-P00040496) and participating sites. Participating families are required to provide electronic written informed consent and neonatal provider consent is implied through the completion of surveys. The results will be disseminated via peer-reviewed publications and data will be made accessible per National Institutes of Health (NIH) policies.
NCT05205356/clinicaltrials.gov.
Cultural safety, interculturality and antiracism are crucial concepts in addressing health disparities of minority and diverse groups. Measuring them is challenging, however, due to overlapping meanings and their highly contextual nature. Community engagement is essential for evaluating these concepts, yet the methods for social inclusion and protocols for participation remain unclear. This review identifies experimental studies that measure changes resulting from culturally safe, intercultural or antiracist healthcare. The review will describe outcomes and additional factors addressed in these studies.
The study focuses on epidemiological experiments with counterfactual comparisons and explicit interventions involving culturally safe, intercultural or antiracist healthcare. The search strategy covers PubMed, CINAHL, Scopus, Web of Science, ProQuest, LILACS and WHO IRIS databases. We will use critical appraisal tools from the Joanna Briggs Institute to assess the quality of randomised and non-randomised experimental studies. Two researchers will screen references, select studies and extract data to summarise the main characteristics of the studies, their approach to the three concepts under study and the reported effect measures. We will use fuzzy cognitive mapping models based on the causal relationships reported in the literature. We will consider the strength of the relationships depicted in the maps as a function of the effect measure reported in the study. Measures of centrality will identify factors with higher contributions to the outcomes of interest. Illustrative intervention modelling will use what-if scenarios based on the maps.
This review of published literature does not require ethical approval. We will publish the results in a peer-reviewed journal and present them at conferences. The maps emerging from the process will serve as evidence-based models to facilitate discussions with Indigenous communities to further the dialogue on the contributing factors and assessment of cultural safety, interculturality and antiracism.
CRD42023418459.
To explore the factors that may help or hinder deprescribing practice for older people within care homes.
Qualitative semistructured interviews using framework analysis informed by the Consolidated Framework for Implementation Research (CFIR).
Participants were recruited from two care home provider organisations (a smaller independently owned organisation and a large organisation) in England.
A sample of 23 care home staff, 8 residents, 4 family members and 1 general practitioner were associated with 15 care homes.
Participants discussed their experiences and perceptions of implementing deprescribing within care homes. Major themes of (1) deprescribing as a complex process and (2) internal and external contextual factors influencing deprescribing practice (such as beliefs, abilities and relationships) were interrelated and spanned several CFIR constructs and domains. The quality of local relationships with and support from healthcare professionals were considered more crucial factors than the type of care home management structure.
Several influencing social and contextual factors need to be considered for implementing deprescribing for older adults in care homes. Additional training, tools, support and opportunities need to be made available to care home staff, so they can feel confident and able to question or raise concerns about medicines with prescribers. Further work is warranted to design and adopt a deprescribing approach which addresses these determinants to ensure successful implementation.
To evaluate the impact of usual care plus a fundamental nursing care guideline compared to usual care only for patients in hospital with COVID-19 on patient experience, care quality, functional ability, treatment outcomes, nurses' moral distress, patient health-related quality of life and cost-effectiveness.
Parallel two-arm, cluster-level randomized controlled trial.
Between 18th January and 20th December 2021, we recruited (i) adults aged 18 years and over with COVID-19, excluding those invasively ventilated, admitted for at least three days or nights in UK Hospital Trusts; (ii) nurses caring for them. We randomly assigned hospitals to use a fundamental nursing care guideline and usual care or usual care only. Our patient-reported co-primary outcomes were the Relational Aspects of Care Questionnaire and four scales from the Quality from the Patient Perspective Questionnaire. We undertook intention-to-treat analyses.
We randomized 15 clusters and recruited 581 patient and 418 nurse participants. Primary outcome data were available for 570–572 (98.1%–98.5%) patient participants in 14 clusters. We found no evidence of between-group differences on any patient, nurse or economic outcomes. We found between-group differences over time, in favour of the intervention, for three of our five co-primary outcomes, and a significant interaction on one primary patient outcome for ethnicity (white British vs. other) and allocated group in favour of the intervention for the ‘other’ ethnicity subgroup.
We did not detect an overall difference in patient experience for a fundamental nursing care guideline compared to usual care. We have indications the guideline may have aided sustaining good practice over time and had a more positive impact on non-white British patients' experience of care.
We cannot recommend the wholescale implementation of our guideline into routine nursing practice. Further intervention development, feasibility, pilot and evaluation studies are required.
Fundamental nursing care drives patient experience but is severely impacted in pandemics. Our guideline was not superior to usual care, albeit it may sustain good practice and have a positive impact on non-white British patients' experience of care.
CONSORT and CONSERVE.
Patients with experience of hospitalization with COVID-19 were involved in guideline development and writing, trial management and interpretation of findings.