The objective of our study was to assess the feasibility, acceptability, and early impacts of the inaugural Research-to-Action Fellowship Program (FP) on patient partnership and knowledge mobilization (KM) practice within a diabetes research network. The FP is a patient-partner-centric initiative co-designed by patient partners, FP interest holders and implementers to build capacity in KM. Fellows receive mentorship, training, and financial support to co-design and disseminate KM products with community-based partner organizations. A formative, multi-method case study using surveys, focus groups, and interviews was conducted with patient-partner fellows, partner-organization representatives, and program implementers. Quantitative data were analyzed descriptively; qualitative data were examined using directed content analysis. Fifteen of 16 invited participants contributed data. Fellows reported perceived gains in KM-related knowledge, clarity of roles, support, collaboration, and community engagement. Qualitative themes highlighted the value of paid, leadership-based roles for patient partners, dyad structures, strong relational infrastructure, and iterative adaptation. Overall, our study showed that a patient-partner-led KM fellowship was perceived as feasible and acceptable, and as a means of building capacity for more meaningful patient partnership.
As the older adult population continues to grow, health care systems must adapt their delivery models to meet this demographic’s specific needs. University of Utah Health is addressing this challenge by integrating the Institute for Healthcare Improvement’s 4Ms framework across its care continuum. This framework emphasizes What Matters, Medication, Mentation, and Mobility to support age-friendly care delivery for older adults. To support this integration, the Division of Geriatrics and the Patient Experience Department partnered in 2022 to launch a novel Age-Friendly Patient and Family Advisory Council (PFAC) comprised of older adults. During its inaugural year, council members shared personal care experiences framed around the 4Ms to help co-design organizational improvement initiatives. Analysis of the Age-Friendly PFAC sessions revealed three primary themes: the need for stronger patient-provider communication, a demand for individualized care strategies, and a recognition of the emotional complexities involved in the care experience. This research brief highlights the insights gathered from the sessions and outlines the development and implementation of the Age-Friendly PFAC, providing a scalable model for health systems looking to build their own councils.
The patient-provider relationship is becoming increasingly fractured, with many clinicians overwhelmed by administrative tasks and patients often feeling unheard. Often missing from clinical care is what this author has termed “human connection” which refers to the relational quality of encounters characterized by active listening, eye contact, empathic responsiveness, shared decision-making, and the patient’s sense of being seen and understood by their provider. While the electronic health record is often viewed as a cause of this disconnect, artificial intelligence (AI) offers a meaningful opportunity to help restore that bond. By automating clerical tasks such as documentation, inbox management, and care navigation, AI can help providers reclaim the time and cognitive space necessary for empathetic, human-centered care. This article draws on both the published evidence and the author’s own experience to examine the impact ambient and agentic AI can have on the clinical experience for both patients and providers while also acknowledging the risks of AI and the necessary safeguards for using AI in a clinical environment. When deployed with care and oversight, AI can allow clinicians to reclaim the human connection that is at the core of the care experience.
This patient perspective article presents practical recommendations, rooted in social psychological research, for pediatric emergency room and hospital care. The perspective is based upon the experience of a parent to a child with autism who is non-speaking and has required recurrent hospital care. The perspective highlights systemic challenges facing non-speaking autistic children and their families in hospital care contexts, including challenges in handoff communication and information transfer requiring repeated disclosure, as well as advocacy fatigue and dysregulating care environments. Recommendations for supporting non-speaking autistic children - likely to extend to others with sensory or communication challenges - are proposed, including developing sensory-friendly spaces, identifying ways to signal communication needs, provider training provisions, and suggestions for inclusive language.
Emergency department (ED) crowding is associated with many types of medical errors and mortality. The association of ED crowding and patient and family experience (PFE) is largely unknown. The study objective was to determine the association between crowding in pediatric EDs (PEDs), operational factors, and PFE scores. This was a retrospective analysis of the association between PED crowding (main exposure as measured by PEDOCS, a validated real-time crowding score) and PFE survey scores (main outcome), for 10,876 patient encounters in two PEDs over 18 months. Multivariable regression was used to determine the association of PEDOCS and relevant covariates with PFE. The PEDs were busy but not overcrowded for 83% of encounters. PED crowding was independently associated with worse PFE. Pairwise comparisons showed PEDOCS-measured crowding was independently associated with worse PFE. The greatest reduction in PFE occurred as the PEDs progressed from “busy” to “extremely busy.” Covariates including acuity, arrival time, and patient age were also associated with worse PFE scores. Further work to develop targeted interventions using real-time crowding measures may improve PFE in PEDs.
Background:Chronic kidney disease (CKD) and end-stage renal disease (ESRD) are rising public health concerns in low- and middle-income countries such as Ghana, where late diagnosis and limited access to renal replacement therapy are common. Qualitative evidence on their lived experiences in Ghana remains limited. Aim:To explore the lived experiences and challenges of patients with CKD and ESRD receiving hemodialysis in Ghana. Methods:An exploratory descriptive qualitative study was conducted with 17 patients with CKD/ESRD on hemodialysis for at least six months at Ho Teaching Hospital, Ghana. Data were collected through face-to-face semi-structured interviews (July-August 2025), audio-recorded, transcribed verbatim, and analyzed using conventional content analysis. Reflexivity and team-based coding ensured rigor. Results:Three themes emerged: (1) Structural and health system failures shaping illness trajectories, encompassing delayed and misdiagnosis, perceived neglect, limited dialysis availability, and severe financial hardship; (2) Fear of death and loss of self, reflecting persistent mortality anxiety, and identity disruption and (3) Endurance through relationships, faith, and treatment-related hope, highlighting the critical role of family support, spiritual coping, and temporary symptom relief from dialysis in sustaining resilience. Conclusion:Patients with CKD/ESRD in Ghana face significant structural, financial, and psychosocial challenges that affect their illness experience and treatment engagement. Although family support, faith, and symptom relief promote resilience, they do not compensate for gaps in renal care. Improving early diagnosis, equitable dialysis access, psychosocial integration, and policy reform is essential to enhance outcomes and quality of life.
A child’s hospitalization can be a major crisis for parents, and is influenced by individual, interpersonal, organizational, community, and societal factors. This study aimed to characterize the experiences of a large international cohort of parents of hospitalized children. Within a longitudinal 14-country study, parents ≥ 18 years staying at a nearby Ronald McDonald House® during their child’s hospitalization completed surveys about their family’s socio-demographics and hospital experience. Free-text comments were analyzed using qualitative methods, guided by family-centered care (FCC) principles and the socio-ecological model (SEM). Results were based on 2,510 of 3,350 (75%) participants who provided comments. Parents described needs and gaps in services across all dimensions of the SEM. Parents also described their sources of strength, valued services, and recommendations for support during pediatric hospitalization across FCC and SEM dimensions. In conclusion, this analysis of parents’ experiences revealed common challenges faced by families of hospitalized children globally and can guide policies and practices to innovate and scale hospital, community, and societal services to reduce the burden of pediatric hospitalization on parents, families, and communities.
Acute stroke care involves complex decisions that may limit patient understanding in care decisions. Review of National Research Corporation (NRC) patient experience survey data at a Comprehensive Stroke Center identified that patient-perceived participation in care decisions was the least scoring domain, prompting a targeted quality improvement intervention. The primary objective was to evaluate whether by introducing a standardized patient information tool, combined with physician reinforcement, improves patient-perceived participation in care decisions for hospitalized stroke patients. A single-center, pre-post quality improvement study was conducted within the inpatient stroke service using a standardized patient information tool and physician education as a combined intervention. Stroke coordinators reviewed the form with the patient and, when necessary, family members. Interrupted time series analysis was used to evaluate changes in patient-perceived participation, based on monthly NRC response scores from September 2024 through December 2025. Interrupted time series analysis showed no statistically significant change in NRC scores associated with the intervention (p = 0.063). The observed differences in pre-intervention versus post-intervention mean NRC scores (62.1% vs, 91.7%) were largely explained by pre-existing fluctuations and a rising pre-intervention trend. Standardized patient education combined with physician engagement did not produce a statistically significant result when analyzed using interrupted time series analysis. While post-intervention slope suggested improved trend, this finding was not statistically significant after controlling for pre-existing trends and monthly variability. However, the wide confidence intervals and limited post-intervention period imply that a modest effect cannot be ruled out. Larger, long-term studies are needed to confirm these findings.
I first learned about the baby blues in medical school as a short definition: mood swings, tearfulness, and irritability resolving within two weeks. When I experienced them after giving birth during my second year of training, they felt far more complex than what I had read. I remember lying in the hospital that first night, overcome with tears and questioning if I was already falling short as a mother. Intellectually, I knew shifting hormones were at play, yet the sadness and guilt felt undeniably real. As a Black woman, I also carried the weight of cultural expectations. There is a persistent narrative that we must be strong, resilient, and unshaken no matter the circumstance. This expectation, often described as the Superwoman Schema, can make vulnerability feel unacceptable and discourage seeking support. For me, it added another layer to an already difficult transition. This experience deepened my understanding of how cultural identity shapes postpartum emotions and underscored the importance of making intentional space for emotional health, particularly for those whose cultural narratives may silence their struggles.
Background Compassion is central to healthcare and linked to better outcomes for patients and providers. Past studies have employed small, clinically-specific samples and qualitative designs, producing a characterisation of compassion emphasising communicative and affective elements. What compassion “looks like” in primary care remains unclear. Objective Quantify how doctor behaviours are seen as signalling compassion to primary care patients, consider questions of structure and the possibility that different behaviours might be more or less central to the experience of provider compassion in different groups. Methods A pre-registered, anonymous, online, survey design recruited 513 patients from the general population. Participants provided demographic and health data before rating behaviours in terms of their importance to compassion. Results Structural analyses revealed three elements to compassionate behaviour: ‘Attentively Diagnoses, Treats, and Refers’, ‘Positive and Reassuring Communication’, and ‘Attends to Concerns and Preferences’. Exploratory analyses suggested Māori and male patients saw affective and health deliverables as less important, older and/or preoccupied patients prioritised reassuring communication, and Asian and male patients saw inclusive care and tailored treatment as more important. Conclusion Consistent with theory, these data suggest that compassion is more than warm or supportive communication but it also involves concrete actions to alleviate suffering; different patient groups may vary in their preferences.
This multicenter, cross-sectional study aimed to assess patient awareness of their rights and the perceived compliance of healthcare teams with these rights in surgical settings across five hospital systems in southern Iran. A total of 582 surgical inpatients participated, with data collected using two validated scales: the Patient Rights Awareness Questionnaire (PRAQ) and the Healthcare Team Compliance Scale (HTCS). The results revealed that the majority of patients had moderate awareness of their rights, with significant variability across domains. Notably, privacy and confidentiality had the lowest awareness scores. Perceived healthcare team compliance was generally high, but gaps were identified in privacy protection and access to medical records. Key factors influencing awareness and compliance included age, education, type of surgery, and hospital setting. These findings underscore the need for targeted interventions to improve patient rights education and healthcare team training, particularly in high-stress emergency settings. Enhancing patient awareness and compliance with patient rights can ultimately improve the quality and transparency of care.
Care partners of people living with dementia (PLWD) report significantly higher levels of stress, anxiety, and depression than non-care partners. Mindfulness-based programs improve overall well-being, but little research has evaluated the impact of emotional resilience programs for care partners of PLWD. This study reports the design and implementation of a pilot emotional resilience training initiative for care partners of PLWD. Three sessions were held at a monthly care partner support group. Emotional regulation skills were assessed using self-recorded emotional shifts before and after resilience practices. The feasibility and acceptability of the program was assessed using feedback collected through a post-survey and focus session. After participating in resilience practices, 82% of participants reported experiencing increased positive emotion. Most participants plan to use the program tools in the future and agree that their overall well-being improved after the training. Participants also noted that this program would be impactful for other care partners. The findings of this pilot study provide evidence that emotional resilience training may be a beneficial support strategy for care partners of PLWD.
Background/Objectives Infection-associated chronic illnesses are associated with substantial functional impairment that limits participation in traditional in-person research. A fully remote, multicomponent intervention that combines ketogenic metabolic therapy (KMT) with behavioral interventions targets several proposed biological mechanisms underlying these conditions. This study aimed to characterize patient-reported experiences with a fully remote intervention that integrated KMT and thiamine supplementation with behavioral strategies, including circadian entrainment and mindfulness-based resilience coaching. Methods In this cross-sectional study, quantitative data were collected via online REDCap surveys. Feasibility and acceptability benchmarks included perceived treatment suitability, relevance, safety, and reported treatment adherence. Optimization items evaluated preferred program duration, dosing, and structure, as well as components that respondents identified as most important for future refinement. Results Among an international sample ( n =41), all feasibility and acceptability benchmarks were met: 96% reported the intervention was helpful, 96% recommended it, and 75% felt “ a lot better ” after completion. Respondents provided patient-centered perspectives to optimize the intervention. Conclusions Incorporating patient perspectives is essential for guiding the development of safe, acceptable, and effective treatment strategies for infection-associated chronic illness, including Long COVID. Strong indicators of feasibility, acceptability, and perceived benefits support the rationale for larger controlled trials to investigate clinical efficacy and the underlying mechanistic pathways of multicomponent metabolic interventions.
Trust is a cornerstone of effective healthcare delivery, particularly in hospital settings where nurses serve as primary care coordinators and communicators. Nurse leader rounding—a structured practice of engaging with patients—has been widely adopted to build trust, improve communication, and enhance patient satisfaction ratings, yet its measurable impact remains variable across organizations. This post-hoc analysis evaluated over 22,000 post-discharge survey responses from adult inpatients across a large, multi-facility health system, comparing patient satisfaction scores between those who experienced documented nurse leader rounding and those who did not. Findings demonstrated high overall satisfaction, with statistically significant improvements in communication and collaboration-related measures at select facilities, suggesting that nurse leader rounding can strengthen relational aspects of care that build trust between patients and care teams. The study also highlights how contextual factors—such as facility practices and rounding fidelity—can influence effectiveness. Limitations include a ceiling effect due to consistently high survey scores and missing responses related to the optional design of the survey. Future research should explore how rounding strategies can be adapted to maximize trust and satisfaction across diverse care settings.
Our study explored psychosocial experiences in the pre-surgery period that shaped the decision to undergo sleeve gastrectomy, with a focus on self-perception and internalised stigma. Nineteen participants from Turkey were purposively recruited. Semi-structured in-depth interviews were conducted to collect data, which were then analysed thematically with an inductive approach. Seven key themes emerged: body image, social stigma, family dynamics, emotional coping, psychological barriers to weight loss, surgical decision-making, and psychosocial impacts of weight. Participants reported feelings of shame, frustration, and social withdrawal linked to self-blame. Emotional eating was a common coping mechanism, while repeated dieting led to demotivation and exhaustion. Fear and hope influenced surgery decisions, with information seeking alleviating uncertainty. Family relationships both supported and stressed participants, affecting their emotions and health behaviours. These findings underline the complex psychosocial challenges faced before surgery and their influence on decision-making, emphasising the need for supportive and stigma-free care.
The digital transformation of healthcare is driving the integration of Artificial Intelligence (AI) into clinical practice. Although telelearning is widely used in digital learning strategy, empirical evidence regarding its relationship with nurses’ readiness to adopt AI remains limited. This study aims to identify the level of telelearning development and nurses’ readiness to adopt AI, as well as to analyze the relationship in a Ministry of Health Hospital. A quantitative cross-sectional study involved 219 clinical nurses through census sampling. Univariate analysis and Spearman’s rho were used. Most respondents fell into high category for telelearning development (58.9%) and readiness to adopt AI (59.4%). There was a significant positive correlation between telelearning development and readiness to adopt AI (ρ=0.485; p=0.001). These findings indicate that a well-developed telelearning environment is associated with higher levels of AI readiness among nurses. Study limitations include the cross-sectional design and the use of self-report instruments. The recommendations should evaluate AI literacy modules integrated into telelearning, digital mentorship, AI policy co creation, and nursing curriculum revisions incorporating AI ethics and digital competency standards.
In recent years, an increasing number of Patient Reported Experience Measures (PREMs) have been enabled to explore and guide improvements. The aim is to establish a set of questionnaires for assessing hospitals care, share results, and perform a transparent formal cognitive and psychometric validation process for some of these. A set of 23 questionnaires was developed through literature review and discussion with professionals from one Spanish tertiary hospital, and supplemented with Net Promoter Scores (NPS). The hospital piloted the questionnaires, receiving 400,719 responses (November-2022-November-2025). These were described for reference benchmarking. Questionnaire dashboards were enabled to all hospital professionals Intranet. Five of the PREMs underwent content validation:focus groups/interviews in the aforementioned hospital(July-2024-September-2025) and psychometric validation(June-2025-January-2026) involving 11 hospitals from 4 Spanish regions, including an item-bank proposal and scoring. A cultural adaptation process was performed into Catalan and English, involving additional hospitals. The hospital received 400,719 responses from 23 questionnaires (24% overall response-rate). The main average NPS values (range across services) were: adult patients hospitalization/adults referring to children's hospitalization (77ad/70adch;55-84), emergencies without hospitalization (71/52), external face-to-face consultations (83ad/75ch;38-83). Through five questionnaires tested with focus groups, items were nunaced, deleted or added. The questionnaires proved psychometrically robust. The process per questionnaire involved between 106-1,353 patients per validation wave. The cultural adaptation process was formally completed with minor changes. Fully-validated questionnaires are generated and detailed with data from several patient profiles and without specific units biases enabling wide patient experience analyses. The robust validated questionnaires can inspire other hospitals future value-based healthcare.
Background Patient- and public-led research signals more than a redistribution of decision-making authority, positioning patients and public as key contributors of scholarly inquiry throughout the research process. Despite the growing awareness of patient- and public-led research endeavors, it is unclear how they are conducted. This scoping review aimed to synthesize how patient- and public-led research is defined and practiced in health research. Methods Our scoping review was guided by the Arksey and O’Malley’s framework (2005) and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR). A comprehensive search of health research databases and grey literature sources was conducted. Included studies were published in English and described how patients and public held final decision-making authority ( Empower on the International Association for Public Participation, IAP2 continuum) across various research roles and tasks. These standardized roles and tasks were described using the Contributor Role Taxonomy (CRediT). Through iterative discussions and abductive analyses, groupings of studies that shared similar contexts and extended beyond standardized roles and tasks were identified. Results Our search identified 4,723 records, of which 68 articles describing 62 studies met the inclusion criteria. Patient- and public-led research was described using terms including consumer-led, user-led, Indigenous-led; with only 14 (23%) studies offering an explicit definition. Our review identified three contexts in which patient- and public-led research occurred including: how research was carried out (operations), how decisions were made (governance), and how intellectual/experiential contributions from patients and public shaped research trajectories (accountability). Conclusion By shifting the focus from involvement to leadership, our findings provide a foundation for more intentional design, meaningful support, and robust evaluation of patient- and public-led health research.
Patient death is one of the most emotionally challenging experiences for healthcare professionals. Introducing structured education early in training may promote resilience and support more compassionate, patient-centered care. At Texas A&M Naresh K. Vashisht College of Medicine, preparation for patient death was historically addressed through the “hidden curriculum,” defined as informal, unspoken learning that occurs outside the formal educational structure. Recently, students led an initiative to develop a formal educational session— Preparing Students for Patient Death —combining asynchronous and live components for second-year students prior to clerkships. In Spring 2024, the session was piloted as part of the Practice of Medicine 3.5 course for approximately 60 students on the Dallas and Round Rock campuses. The session included a physician-led video and a live interdisciplinary panel, with Dallas students completing pre- and post-session surveys. Of the 40 Dallas attendees, 29 completed the pre-survey and 14 completed the post-survey. Findings showed increased preparedness (2.4 to 3.4), high clinical relevance (100% agreement), and strong endorsement (100% would recommend), addressing a key gap in medical education. These results suggest that early, interprofessional education on patient death and dying addresses a critical gap in undergraduate medical education that may support both student well-being and future patient care.
Morbidity and mortality due to Asthma remains high Australia-wide, especially in Culturally and Linguistically Diverse communities, underscored by low health literacy and a lack of access to culture specific asthma care. A nurse-led asthma education programme incorporating Bicultural Health Educators to improve asthma outcomes was trialled in three of the communities most severely affected during a thunderstorm asthma event in Melbourne, Victoria, Australia. This study aimed to uncover unique asthma management challenges affecting these communities from a consumer perspective. A qualitative explorative design was applied, and 47 participants with asthma from Vietnamese, Sri Lankan, and Indian communities were interviewed. The participants completed two asthma education sessions, six weeks apart, with an Asthma Nurse Educator supported by a Bicultural Health Educator. At the first session, participants completed a questionnaire and undertook a narrative interview in which they shared their views on their asthma healthcare journey. Bicultural Health Educators recorded responses to open questions about perspectives and experiences of their journey, which were coded and thematically analysed. Key factors impacting on asthma management from the consumer and Bicultural Health Educator perspective included limited knowledge and understanding of asthma and its management, difficulties with inhaler technique and difficulty navigating asthma care in the community. Culturally-driven attitudes towards asthma management, along with low educational literacy levels also played a significant role. The study identified factors impacting asthma management in the Sri Lankan, Indian and Vietnamese communities in West Melbourne. Incorporating these insights can inform the delivery of asthma care and education to improve asthma outcomes for patients.
