Search Results (30)

Family caregivers provide most daily care for people living with chronic illness or frailty, yet they remain under-recognized in health and social care systems. To address this gap, we co-designed the Caregiver-Centered Care Champions Education Program, which equips frontline providers with the competencies needed to lead caregiver-inclusive change. Guided by the Kirkpatrick-Barr Health Workforce Education Framework, we conducted a mixed methods interpretive description evaluation of learner satisfaction, knowledge and confidence gains, and self-reported behaviour change. Sixty-seven interdisciplinary participants completed three online modules. Quantitative results from pre/post surveys (Wilcoxon signed rank tests) showed significant improvements across all competencies (p < 0.001; large effect sizes) alongside high satisfaction (means 6.56–6.96/7). Qualitative findings revealed that 94% of participants applied program content within three months, and 61% implemented five or more distinct behaviour changes (e.g., collaborative care planning, system navigation support). The analysis illuminated how learners integrated caregiver-centred principles with change leadership strategies. Time constraints and staffing shortages emerged as key barriers. Our co-designed, theory-informed approach effectively bridged individual learning and system change, demonstrating the potential to transform caregiver inclusion practices when supported by organizational policies. Full article

Background: Family caregivers are a vital yet often under-recognized part of the healthcare system. They provide essential emotional, physical, and logistical support to individuals with illness, disability, or frailty, and their contributions improve continuity of care and reduce system strain. However, many healthcare and social service providers are not equipped to meaningfully engage caregivers as partners. In Alberta, stakeholders validated the Caregiver-Centered Care Competency Framework and identified the need for a three-tiered education model—Foundational, Advanced, and Champion—to help providers recognize, include, and support family caregivers across care settings. This paper focuses on the development and early evaluation of the Advanced Caregiver-Centered Care Education modules, designed to enhance the knowledge and skills of providers with more experience working with family caregivers. The modules emphasize how partnering with caregivers benefits not only the person receiving care but also improves provider effectiveness and supports better system outcomes. Methods: The modules were co-designed with a 154-member interdisciplinary team and grounded in the competency framework. Evaluation used the first three levels of the Kirkpatrick–Barr health workforce education model. We analyzed pre- and post-surveys from the first 50 learners in each module using paired t-tests and examined qualitative feedback and SMART goals through inductive content analysis. Results: Learners reported a high level of satisfaction with the education delivery and the knowledge and skill acquisition. Statistically significant improvements were observed in 53 of 54 pre-post items. SMART goals reflected intended practice changes across all six competency domains, indicating learners saw value in engaging caregivers as partners. Conclusions: The Advanced Caregiver-Centered Care education improved providers’ confidence, knowledge, and skills to work in partnership with family caregivers. Future research will explore whether these improvements translate into real-world practice changes and better caregiver experiences in care planning, communication, and navigation. Full article

Background: Upper-limb impairment is a major cause of post-stroke disability, limiting participation in meaningful activities. Robotic rehabilitation may address this by delivering high-dosage, task-oriented training while reducing clinician workload. However, limited clinical translation of robotic interventions may be partly due to poor reporting in the literature. This systematic review evaluated the intervention-reporting quality (completeness and consistency) of randomized controlled trials (RCTs) comparing robotic and conventional upper-limb stroke rehabilitation. Methods: Four databases were searched for RCTs investigating robotic upper-limb interventions compared with dose-matched conventional interventions for people with stroke. Intervention reporting was assessed using the TIDieR-Rehab checklist. Trained reviewers independently extracted and evaluated data, resolving discrepancies through consensus. Completeness and consistency were analyzed descriptively. Results: Among 25 RCTs, the overall reporting completeness was low (43%). Robotic interventions were better described (50%) than conventional interventions (36%). While timing and total dose were commonly reported, critical details on provider expertise, active dose, progressive challenge, personalization, and harms were often omitted. Reporting consistency was moderate (68%), with key information dispersed across article sections. Conclusions: Inadequate reporting limits the transparency, replication, and implementation of robotic upper-limb interventions. Adopting structured reporting frameworks like TIDieR-Rehab is essential for advancing the field. Full article

Metabolic dysfunction-associated fatty liver disease (MAFLD) is a growing health concern worldwide. Human cell-based in vitro culture models that retain disease-relevant phenotypic pathways and responses to assess the efficacy and liability of new therapeutics are needed. Obeticholic Acid (OCA), a Farnesoid X Receptor agonist, has been identified for MAFLD treatment, and clinically shown to have anti-inflammatory and anti-fibrotic effects. In this study, healthy and disease-origin primary human hepatocytes (PHHs) were cultured in TruVivo^®, an all-human hepatic system for 14 days and treated with OCA to determine its’ effects on lipogenic, inflammatory, and fibrogenic pathways. Decreases in lipogenesis and triglyceride levels were measured in OCA treated healthy and diseased PHHs. Significant decreases in CYP3A4 activity and gene expression were quantified. Macrophage marker expression, pro-inflammatory cytokines and fibrotic markers were lowered in OCA treated diseased PHHs. CYP7A1 gene expression decreased, while BSEP gene expression increased in OCA treated healthy and diseased PHHs. Overall, OCA treatment reduced lipogenic, inflammatory, and fibrogenic markers in diseased PHHs. Differences in the potency and efficacy of OCA against different disease-relevant pathways were observed in healthy and diseased PHHs indicating divergence of key regulatory mechanisms between healthy versus diseased phenotypes. Full article

Gaucher disease (GD) is a lysosomal storage disorder (LSD) characterized by glycosphingolipid accumulation. Age of symptomonset and disease progression varies across types of disease. Newborn screening (NBS) for Gaucher disease facilitates early identification of affected individuals and enables pre-symptomatic monitoring with the goal of starting therapies early and improving clinical outcomes. This multi-center study involved New Jersey NBS referral centers. Data regarding initial NBS results, confirmatory testing, diagnosis, and treatment were collected. For patients on therapy, monitoring biomarkers and exam findings are available as of the last clinical evaluation. Between July 2019 and December 2023, 438,515 newborns were screened, with 60 screen-positive cases. Of those positive screens, 19 cases with positive screens did not undergo confirmatory testing due to parental refusal, loss to follow-up, or death; 23 cases were false positives; 14 newborns were diagnosed with GD type I; 2 newborns were diagnosed with suspected type I GD; 2 newborns were diagnosed with GD type II; and 1 case is still pending. Three type I GD patients started enzyme replacement therapy, with the youngest starting at 28 months of age. Post-treatment data are available for these individuals. One type II case was referred to experimental gene therapy, and one was started on ERT. Our results demonstrate that NBS for GD is a valuable public health tool that can facilitate early diagnosis and intervention. Full article

Background: Family caregivers provide most (75–90%) of the essential unpaid care and support for individuals living with chronic conditions, disabilities, and age-related needs in the community, with about half performing medical tasks traditionally performed by professionals. Caregivers also assist with 15 to 35% of the care in congregate care settings. Yet despite their critical contributions to patient care, caregivers face stress, declining well-being, and insufficient recognition in healthcare systems. Addressing these challenges requires innovative, person-centered approaches to training healthcare providers. Co-design or co-production are participatory research methods that involve individuals with lived experience to ensure relevance and impact. Objective: This study sought to understand how participatory co-design principles influenced learning, collaboration, and engagement among diverse participants in developing a caregiver-centered education program for healthcare providers. Actionable recommendations for optimizing co-design processes are provided. Methods: Eighty-five participants from a team of 155 collaborators, including caregivers, healthcare providers, educators, policymakers, and leaders, participated in ten focus group sessions conducted in Zoom breakout rooms. Interviews were transcribed verbatim and analyzed using Thorne’s interpretive description and Braun and Clarke’s reflexive thematic analysis. Results: Participants described the co-design process as fostering collaboration, inclusivity, and skill enhancement. Exposure to diverse perspectives expanded transformative understanding and prompted reflection on caregiver support within professional practices. Skilled facilitation ensured equitable engagement. Challenges included information overload and personal time constraints. Participants liked using breakout rooms to mitigate the dynamics of large group management. Still, they recommended pre-meeting materials, flexible scheduling, and expanding stakeholder diversity (e.g., rural, Indigenous, and immigrant caregivers). Conclusions: Co-design fosters meaningful, caregiver-centered education through collaboration and inclusivity. Addressing logistical challenges and representation gaps can further enhance the impact of co-design and empower multi-level, interdisciplinary partners to inform equitable healthcare education. Full article

Background: Liver diseases are a global health concern. Many in vitro liver models utilize cryopreserved primary human hepatocytes (PHHs), which commonly undergo post-thaw processing through colloidal silica gradients to remove debris and enrich for a viable PHH population. Post-thaw processing effects on healthy PHHs are partially understood, but the consequences of applying disease-origin PHHs to post-thaw density gradient separation have not been described. Methods: Using the TruVivo^® system, diseased, type 2 diabetes mellitus (T2DM), and fibrotic PHHs were cultured for 14 days after initially being subjected to either low-density (permissive) or high-density (selective) gradients using Percoll-based thawing medium. Results: Changes in functionality, including albumin and urea secretion and CYP3A4 activity, were measured in diseased, T2DM, and fibrotic PHHs enriched in low Percoll compared to PHHs enriched in high Percoll. Lipogenesis increased in the PHHs enriched in low Percoll. Higher expression of CK18 and TGF-β, two fibrotic markers, and changes in expression of the macrophage markers CD68 and CD163 were also measured. Conclusions: The use of Percoll for the enrichment of PHHs post-thaw results in differences in attachment and functionality, along with changes in diseased phenotypes, in the TruVivo^® system. Full article

The COVID-19 pandemic underscored the imperative for meaningful family involvement in long-term care, aligning with policy and safety standards while enhancing outcomes for caregivers, residents, and staff. The objectives of this article are as follows: (1) a case study report on implementing a family involvement intervention designed to facilitate the formal and safe engagement of family caregivers in resident care and (2) the pilot evaluation of the intervention. We used Knapp’s six-step implementation science model to guide and describe intervention development to provide insight for others planning family involvement projects. We employed sequential mixed methods, including surveys with quantitative and qualitative questions before and after program implementation for providers, and surveys and interviews with family caregivers a year after. We used the Mann–Whitney U test (p < 0.05) to assess differences in health providers’ perceptions pre- and post-education. Families and staff perceived that the Family Involvement Program was important for improving the quality of care, residents’ quality of life and family/staff relationships. Providers’ perceptions of the program’s positive impact on residents’ quality of life (p = 0.020) and quality of care (p = 0.010), along with their satisfaction with working relationships with families (p = 0.039), improved significantly after the program. Qualitative data confirmed improvements in family–staff relationships. In conclusion, we documented the design of this family involvement initiative to encourage family caregivers and staff to work together in residents’ care. Youville’s Family Involvement Program gives families and family caregivers an explicit role as partners in long-term care. The mixed methods pilot evaluation documented improvements in staff and family relationships. Full article

The COVID-19 pandemic led to the rapid and worldwide development of highly effective vaccines against SARS-CoV-2. However, there is significant individual-to-individual variation in vaccine efficacy due to factors including viral variants, host age, immune status, environmental and host genetic factors. Understanding those determinants driving this variation may inform the development of more broadly protective vaccine strategies. While host genetic factors are known to impact vaccine efficacy for respiratory pathogens such as influenza and tuberculosis, the impact of host genetic variation on vaccine efficacy against COVID-19 is not well understood. To model the impact of host genetic variation on SARS-CoV-2 vaccine efficacy, while controlling for the impact of non-genetic factors, we used the Diversity Outbred (DO) mouse model. We found that DO mice immunized against SARS-CoV-2 exhibited high levels of variation in vaccine-induced neutralizing antibody responses. While the majority of the vaccinated mice were protected from virus-induced disease, similar to human populations, we observed vaccine breakthrough in a subset of mice. Importantly, we found that this variation in neutralizing antibody, virus-induced disease, and viral titer is heritable, indicating that the DO serves as a useful model system for studying the contribution of genetic variation of both vaccines and disease outcomes. Full article

Feline chronic gingivostomatitis (FCGS) is a chronic mucosal and gingival inflammatory disease in which pathogenesis remains unclear. Interactions between the host inflammatory process, the host immune response, and the oral microbiome are implicated in this pathogenesis. To begin to understand this disease and the impact of the microbiome to host inflammatory disease states, we collected sterile noninvasive plaque biofilm samples from ten distinct sites within the oral cavity in cats with stomatitis (n = 12), healthy cats (n = 9), and cats with tooth resorption or periodontitis (n = 11). Analysis of full-length 16S rRNA gene sequences indicated that the microbiomes of cats with FCGS presented marked dysbiosis at multiple oral sites. Additionally, microbiome beta diversity varied with oral condition, indicating that stomatitis, periodontitis, and/or tooth resorption influence the microbiome differently. Lastly, we found that the microbiomes of swabs taken from the oral cavity were comparable to those taken from plaque using endodontic paper points, validating this as another sampling method. Collectively, our work furthers our understanding of the dysbiosis and composition of bacteria in the oral microbiome in FCGS, with hopes of contributing to the prevention, diagnosis, and treatment of this challenging condition in felines. Full article

Family caregivers and care providers are increasingly becoming more distressed and reaching a breaking point within current systems of care. First Nations family caregivers and the health and community providers employed in First Nations communities have to cope with colonial, discriminatory practices that have caused intergenerational trauma and a myriad of siloed, disconnected, and difficult-to-navigate federal-, provincial/territorial-, and community-level policies and programs. Indigenous participants in Alberta’s Health Advisory Councils described Indigenous family caregivers as having more difficulty accessing support than other Alberta caregivers. In this article, we report on family caregivers’, providers’, and leaders’ recommendations to support First Nations family caregivers and the health and community providers employed in First Nations. We used participatory action research methods in which we drew on Etuaptmumk (the understanding that being in the world is the gift of multiple perspectives) and that Indigenous and non-Indigenous views are complementary. Participants were from two First Nation communities in Alberta and included family caregivers (n = 6), health and community providers (n = 14), and healthcare and community leaders (n = 6). Participants advised that family caregivers needed four types of support: (1) recognize the family caregivers’ role and work; (2) enhance navigation and timely access to services, (3) improve home care support and respite, and (4) provide culturally safe care. Participants had four recommendations to support providers: (1) support community providers’ health and wellbeing; (2) recruit and retain health and community providers; (3) improve orientation for new providers; and (4) offer providers a comprehensive grounding in cultural awareness. While creating a program or department for family caregivers may be tempting to address caregivers’ immediate needs, improving the health of First Nations family caregivers requires a population-based public health approach that focuses on meaningful holistic system change to support family caregivers. Full article

University-district partnerships are promising models for leadership preparation programs, however many partnerships fall short of their potential. In this two-year qualitative, action research study, we examine how a university-district partnership led to the simultaneous renewal of the district and university as it sought to develop transformational school leaders. Analysis of semi-structured interviews with program participants, university staff, and district administrators indicated the impactful role of cohorts, co-teaching, and inquiry-based instruction in the continual improvement of all stakeholders. We show how each of these program components informed and transformed the university and district. We also identified partnership conditions that supported their effectiveness. Our findings inform universities and districts designing partnerships for leadership preparation and provide existing partnerships that incorporate cohorting, co-teaching, and inquiry-based instruction a better understanding of their potential impact. Full article

There is a dearth of research on how family caregivers are supported in First Nations. We interviewed family caregivers, health and community providers, and leaders in two Alberta First Nations Communities about their experiences of care and support for the family caregivers in their communities. We employed a qualitative, collaborative participatory action research methodology. We drew on Etuaptmumk, the Mi’kmaw understanding of being in the world is the gift of multiple perspectives. Participants in this research included family caregivers (n = 6), health and community providers (n = 14), and healthcare and community leaders (n = 6). The overarching caregiving theme is the “Hierarchy of challenge”. Six themes capture the challenges faced by family caregivers: (one) “Caregiving is a demanding job”: yet “No one in a sense is taking care of them”; (two) difficult navigation: “I am unable to access that”; (three) delayed assessments and treatment “And I don’t know how they’re being missed”; (four) disconnected health records: “It’s kind of on you to follow up”; (five) racism, “It’s treated differently”; and, (six) social determinants of health, “A lot of these factors have been developing for the longest time”. This study provides evidence that family caregivers’ need to care for and to maintain their own wellbeing is not top of mind in policy or programs in these First Nations communities. As we advocate for support for Canadian family caregivers, we need to ensure that Indigenous family caregivers are also recognized in policy and programs. Full article

Corporations need to understand the factors that influence purchase intention. The current study aimed to understand sustainable clothing patterns in Ecuador. A total of 343 Ecuadorian consumers completed an online survey; the results were analyzed with partial least squares structural equation modeling (PLS-SEM). As the outcome, attitude was predicted by perceived environmental knowledge (PEK) and environmental concern (EC). PEK and EC are positively correlated to attitudes towards purchasing sustainable clothing. Additionally, attitude mediated the relationship between these two variables and purchase intention. As measured by PEK, attitude is the most critical factor in determining purchase intention, based on importance performance map analysis (IPMA). The research findings may support firms’ marketing and selling strategies to demonstrate that their brands are environmentally green and generate greater consumer interest in current and future customers. The novelty of these findings is supported by the partial least squares structural equation modeling (PLS-SEM) technique results. Full article

Extreme heat and poor air quality arising from landscape fires are an increasing global concern driven by anthropogenic climate change. Previous studies have shown these environmental conditions are associated with negative health outcomes for vulnerable people. Managing and adapting to these conditions in a warming climate can present substantial difficulties, especially in climates already challenging for human habitation. This study was set in the tropical city of Darwin, Australia. We recruited individuals from population groups vulnerable to outdoor hazards: outdoor workers, teachers and carers, and sportspeople, to participate in focus group discussions. We aimed to gain an understanding of the impacts of extreme heat and poor air quality and how individuals perceived and managed these environmental conditions. We identified a number of key themes relating to impacts on health, work and activity, and adaptive behaviors, while identifying gaps in policy and infrastructure that could improve the lives and protect the health of vulnerable people living, working, and playing in this region. In addition, these outcomes potentially provide direction for other regions with similar environmental challenges. Extreme heat and poor air quality place an additional burden on the lives of people in high-risk settings, such as outdoor workers, teachers and carers, and sportspeople. Full article