Background: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers.
Objective: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO-pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting.
Methods: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including "think-aloud" interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3).
Results: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small "snackable" sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface.
Conclusions: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care.
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http://dx.doi.org/10.2196/50118 | DOI Listing |
BMC Pediatr
December 2024
Department of Nursing and Midwifery, College of Health, Wellbeing and Life Sciences, Sheffield Hallam University, Sheffield, UK.
Background: Despite progress made towards SDG 3, sub-Saharan Africa lags behind the rest of the world, accounting for over 50% of global neonatal deaths. The increased number of hospital births in the region has not reciprocated the reduction in neonatal mortality rates. Sick newborns face uncertain journeys from peripheral facilities to specialized centres arriving in suboptimal conditions, which impacts their outcomes, due partly to the scarcity of dedicated neonatal transport services.
View Article and Find Full Text PDFBMJ Open
December 2024
School of Medicine, Keele University, Keele, UK.
Objective: The proportion of people having home dialysis for kidney disease varies considerably by treating centre, socioeconomic deprivation levels in the area and to some extent ethnicity. This study aimed to gain in-depth insights into cultural and organisational factors contributing to this variation in uptake.
Design: This is the first ethnographic study of kidney centre culture to focus on home dialysis uptake.
Orphanet J Rare Dis
December 2024
Department of Medical Genetics, Telemark Hospital Trust, Skien, Norway.
Background: Epidermolysis bullosa (EB) comprises a group of genetically and clinically heterogeneous diseases characterized by skin fragility and blistering. EB is incurable, and treatment consists of preventing blisters in addition to painful and time consuming skin care, often performed by the parents, in addition to monitoring other symptoms in cases of severe EB.
Results: The purpose of this study was to explore parental experiences of caring for a child with EB.
Sci Rep
December 2024
Faculty of Health Science and Sports, Macao Polytechnic University, Macao, China.
Immune checkpoint inhibitors (ICIs) have been approved for monotherapy and combined therapy with chemotherapy and/or radiotherapy in China since 2018. The number of patients receiving ICIs has significantly increased in recent years, and the collection and analysis of this data are crucial for a comprehensive understanding of their clinical outcomes and adverse effects. The effects of ICIs may vary among different ethnic groups, and there is a lack of such data in the Chinese population.
View Article and Find Full Text PDFSci Rep
December 2024
Department of Electronics and Telecommunications, Politecnico di Torino, 10123, Torino, Italy.
Chronic wounds are a syndrome that affects around 4% of the world population due to several pathologies. The COV-19 pandemic has enforced the need of developing new techniques and technologies that can help clinicians to monitor the affected patients easily and reliably. In this prospective observational study a new device, the Wound Viewer, that works through a memristor-based Discrete-Time Cellular Neural Network (DT-CNN) has been developed and tested through a clinical trial of 150 patients.
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