Conectar
To explore the lived experience of young people aged 16–24 years diagnosed with melanoma and that of their significant other in England.
Interpretive phenomenological analysis.
Data were collected between August 2023 and January 2024 from one specialist cancer centre in England. Thirteen young people were approached, and 10 took part. Each young person was asked to nominate a significant other. Five nominated a significant other, and five nominated no one. Although interviews were offered face-to-face, virtual was the preferred method. In-depth semi-structured interviews were audio-recorded with the participant's consent. Interview data were transcribed verbatim and analysed.
The core conceptual thread woven throughout the findings was ‘It's like being on a rollercoaster,’ which is representative of the ups and downs of the treatment trajectory, often without the support of age-appropriate specialist care. Four superordinate themes were identified: ‘Is something wrong?’, ‘Suddenly it's serious’, ‘Out on a limb’ and ‘Finding our place’.
Although most young people were treated in a primary treatment centre for adults with cancer, their experience was challenging from route to diagnosis through their treatment and beyond. Few received age-appropriate care to support their physical, emotional, and social wellbeing to help them navigate the experience.
There is limited evidence exploring the experiences of teenagers and young adults living with melanoma or that of their significant other. This enriched understanding supports improvement of the care pathway and service delivery for these young people and their families.
One young person with lived experience was paid as a consultant to be part of the research team. He helped develop the grant application and research questions, data analysis, and writing this paper.
To describe a knowledge translation capacity-building initiative and illustrate the roles of nurses in practice change using an exemplar case study.
The report uses observational methods and reflection.
The Knowledge Translation Challenge program involves a multi-component intervention across several sites. The advisory committee invited eligible teams to attend capacity-building workshops. Implementation plans were developed, and successful teams receive funding for a 2 year period. Evaluation involved collecting data on program uptake and impact on practice change. Data has been collected from five cohorts. The exemplar case study employed an action-research framework.
Four nurse-led teams have demonstrated successful implementation of their practice change. The case study on implementing a clinical toolkit for clozapine management further illustrates a thoughtful planning process, and implementation journey and learnings by a team of nurses.
The Knowledge Translation Challenge program empowers nurses to use implementation science practices to enhance the quality and effectiveness of healthcare services. Success of this initiative serves as a model for addressing the persistent gap between knowledge and practice in clinical settings and the value of activating nurses to help close this gap.
As the most trusted and numerous profession, it is vital that nurses contribute to efforts to translate research evidence into clinical practice. The Knowledge Translation Challenge program supports nurses to lead practice change.
The Knowledge Translation Challenge program successfully equips nurses and other health care providers with the knowledge, skills and resources to implement practice improvements which enhance the quality and effectiveness of healthcare services and nursing practice.
The Knowledge Translation Challenge advisory committee has three patient-public partners that support teams to develop a patient-oriented approach for their projects by providing feedback on the implementation plans. Each team was also supported to include patient-public partners on their project.
Rare diseases (RD) are collectively common and often genetic. Families value and can benefit from precise molecular diagnoses. Prolonged diagnostic odysseys exacerbate the burden of RD on patients, families and the healthcare system. Genome sequencing (GS) is a near-comprehensive test for genetic RD, but existing care models—where consultation with a medical geneticist is a prerequisite for testing—predate GS and may limit access or delay diagnosis. Evidence is needed to guide the optimal positioning of GS in care pathways. While initiating GS prior to geneticist consultation has been trialled in acute care settings, there are no data to inform the utility of this approach in outpatient care, where most patients with RD seek genetics services. We aim to evaluate the diagnostic yield, time to diagnosis, clinical and personal utility and incremental cost-effectiveness of GS initiated at the time of referral triage (pre-geneticist evaluation) compared with standard of care.
200 paediatric patients referred to one of two large genetics centres in Ontario, Canada, for suspected genetic RD will be randomised into a 1:1 ratio to the intervention (GS first) or standard of care (geneticist first) arm. An unblinded, permuted block randomisation design will be used, stratified within each recruitment site by phenotype and prior genetic testing. The primary outcome measure is time to genetic diagnosis or to cessation of active follow-up. Survival analysis will be used to analyse time-to-event data. Additional measures will include patient-reported and family-reported measures of satisfaction, understanding and perceived test utility, clinician-reported measures of perceived test utility and management impact, and healthcare system utilisation and costs.
This study was approved by Clinical Trials Ontario. Results will be disseminated, at minimum, via peer-reviewed journals, professional conferences and internal reports to funding bodies. Efforts will be made to share aggregated study results with participants and their families.
FreshRSS