Objectives To explore Organ and Tissue Donation Coordinator nurses’ experiences and perceptions of their most challenging and complex cases, with a focus on emotional, ethical, and procedural factors. Methods Qualitative descriptive study where data were collected using a semi-structured interview guide and analyzed using a thematic analysis approach. Findings 29 coordinators were interviewed from April 2022 to February 2023 across all Canadian provinces. Most coordinators have been in their role for 6.9 years, and have experience in critical care. Two overarching themes captured the complexity of coordinators’ experiences: (1) Donation Type, encompassing donation after death determination by circulatory criteria and specific donor circumstances, and (2) Pediatric versus Adult Contexts, highlighting contrasts in family, patient, recipient, and team dynamics. Donation after death determination by circulation criteria cases were characterized by procedural pressure due to sensitivity. In contrast, specific donor types, such as patients undergoing medical assistance in dying, intensified emotional and ethical strain through personal connections with donors. Pediatric cases further amplified emotional complexity, extending family interactions and deepening the search for meaning in care. Conclusion Our findings highlighted that coordinators face significant challenges in complex organ and tissue donation cases and there is a current need for targeted interventions to psychologically enhance support systems and improve the coordination of deceased organ donation. Implications for clinical practice Understanding the multifaceted challenges coordinators encounter in complex donation contexts in critical care can inform future training development, psychosocial support, and interdisciplinary communication strategies, thereby improving the overall quality of care provided during donation processes.
BACKGROUND:Clinical Outcome Assessments (COAs) are essential for monitoring progression and treatment response in neuromuscular diseases. However, substantial variability exists in training, confidence, and implementation of COAs among clinical evaluators working with individuals with Spinal Muscular Atrophy (SMA). This study aimed to identify and address these gaps within the Canadian clinical context through a phased educational initiative guided by the Rare Knowledge Mining Methodological Framework (RKMMF). METHODS:A qualitative, phased design was used. A needs assessment with 71 physiotherapists and occupational therapists via focus groups identified inconsistent access to SMA-specific training and challenges in applying standardized assessments. Based on these findings, expert faculty co-developed and delivered bilingual workshops incorporating real-world evaluation videos, simulation-based learning, and multidisciplinary case discussions. Pre- and post-workshop surveys, based on an adapted Kirkpatrick Model, measured changes in familiarity, preparedness, and clinical confidence. Data were analyzed using thematic content analysis and descriptive statistics. RESULTS:Seventy-nine evaluators from Canada participated. Pre-workshop data revealed major gaps in familiarity with SMA-specific COAs. Post-workshop surveys indicated a 75% average increase in self-reported preparedness, with the greatest gains in the Adapted Test of Neuromuscular Disorders 3.0. Four key themes emerged: limited training and support networks; the critical role of multidisciplinary collaboration; constraints of current COAs due to ceiling and floor effects; and the value of integrating patient-reported outcomes in clinical practice. CONCLUSION:Peer-led, evidence-informed workshops significantly improved clinical preparedness in SMA assessment. These findings support the need for ongoing training strategies and demonstrate the RKMMF as a scalable approach for capacity-building in rare disease care.
OBJECTIVES:In survivors of illnesses or surgeries requiring PICU admission, there is a risk of posttraumatic stress disorder (PTSD). We aimed to estimate PTSD prevalence and potential contributing factors in survivors of PICU admission. DATA SOURCES:We performed a PROSPERO registered systematic review (CRD42022348997; Registered August 2022) using MEDLINE, Embase, CINAHL, and Cochrane Central Register of Controlled Trials (CENTRAL) databases, 2000 to 2022, with no language restrictions. STUDY SELECTION:Observational or interventional studies evaluating the incidence or prevalence of PTSD in patients' after PICU admission and/or contributing factors to PTSD. We used studies describing patients younger than 18 years old. Since there were a large number of citations, we used an integrated crowdsourcing and machine-learning model for citation screening. Each citation was reviewed independently and in duplicate by two reviewers at each stage of screening and abstraction. DATA EXTRACTION:Data items included study and participant demographics, details of case definition (PTSD screening), and risk factors. DATA SYNTHESIS:We followed the Preferred Reporting items for Systematic Reviews and Meta-analysis guidelines. Random-effects models were used to analyze PTSD prevalence and subgroup differences. In 24 citations meeting final review criteria, 19 had data for meta-analysis. There were 1898 PICU survivors with a median (interquartile range) cohort size of 59 (49-76). PTSD prevalence in the studies ranged from 3% to 37%; PTSD occurred in 529 of 1898 survivors ( I2 = 72%). Factors influencing PTSD variability included timing of assessment ( p < 0.01) with the highest prevalence (29%) at 6 months and the type of assessment instrument ( n = 10; range, 4-27%; p = 0.04). There was lower prevalence of PTSD (8%) in postoperative cardiac patients ( p < 0.01). Last, we failed to find an association between PICU length of stay and PTSD prevalence ( p = 0.62; I2 = 80%). CONCLUSIONS:PICU follow-up studies from 2000 to 2022 indicate that one-in-three of admissions surviving to 6 months have PTSD. However, there are population, study design factors and heterogeneity in PTSD assessment that indicate more standardization in this research is needed.
BACKGROUND:Research has highlighted the physical complications of starvation, but there is less research examining the psychological effects of starvation in humans. AIMS:This scoping review synthesises literature on the non-physical effects of starvation in humans. METHOD:Following PRISMA-ScR guidelines, we searched MEDLINE, PsycINFO, and Global Health for studies published between 1946 and 2023 examining the non-physical effects of starvation in individuals aged 2-79 years, including those who were starved, malnourished, stunted, wasted, underweight, had a restrictive eating disorder, or were raised in famine conditions. RESULTS:From 16,555 abstracts, 851 articles on the effects of malnutrition were reviewed, and 318 were included. Among these, 35% focused on children and adolescents, 25.5% on adults with comorbid illnesses, 17% on older adults, 13% on those with eating disorders, 6% on adults without comorbidities, and 3.5% on famine survivors. Cognitive impairments were the most frequently reported effects in children. In adults and older adults, depression and anxiety were common, along with reduced cognitive functioning, reduced quality of life, social withdrawal, impaired sleep and impaired sexual functioning. Individuals with eating disorders experienced depression, anxiety, obsessive-compulsive symptoms, emotion regulation difficulties, and cognitive impairment. CONCLUSIONS:There is extensive evidence showing the detrimental non-physical consequences of starvation in children and adults. These findings should inform research, clinical interventions, and educational materials addressing the effects of insufficient nutrition, including in those with restrictive eating disorders.
Physical function declines with aging, yet there is considerable heterogeneity, with some individuals declining very slowly while others experience accelerated functional decline. To gain insight into mechanisms promoting high physical function with aging, we performed proteomics, targeted metabolomics, and targeted kynurenine-focused metabolomic analyses on serum specimens from three groups of octogenarians: High-functioning master athletes (HF, n = 16), healthy normal-functioning non-athletes (NF, n = 12), and lower functioning non-athletes (LF, n = 11). Higher performance status was associated with evidence consistent with: Lower levels of circulating proinflammatory markers, as well as unperturbed tryptophan metabolism, with the normal function of the kynurenic pathway; higher circulating levels of lysophosphatidylcholines that have been previously associated with better mitochondrial oxidative capacity; lower activity of the integrated stress response; lower levels of circulating SASP protein members; and lower levels of proteins that reflect neurodegeneration/denervation. Extending the observations of previous studies focused on the biomarkers of aging that predict poor function, our findings show that many of the same biomarkers associated with poor function exhibit attenuated changes in those who maintain a high function. Because of the cross-sectional nature of this study, results should be interpreted with caution, and bidirectional causality, where physical activity behavior is both a cause and outcome of differences in the biomarker changes, remains a possible interpretation.
