Journal of Patient Experience最新文献

{"title":"Equipping Health Systems to Meet Older Adults' Care Needs: A Novel Age-Friendly Patient and Family Advisory Council.","authors":"Corrie Harris-Chunga, Timothy W Farrell, Mari Ransco","doi":"10.1177/23743735261479859","DOIUrl":"10.1177/23743735261479859","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261479859"},"PeriodicalIF":2.0,"publicationDate":"2026-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13539042/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148888982","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reclaiming the Human Connection in Clinical Care With AI.","authors":"James A Colbert","doi":"10.1177/23743735261486225","DOIUrl":"10.1177/23743735261486225","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261486225"},"PeriodicalIF":2.0,"publicationDate":"2026-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13539002/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148889012","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Overstimulated in the Emergency Room: A Parental Perspective on Improving Pediatric Hospital Care for Non-Speaking Children With Autism.","authors":"Flora Blanchette","doi":"10.1177/23743735261485811","DOIUrl":"10.1177/23743735261485811","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261485811"},"PeriodicalIF":2.0,"publicationDate":"2026-08-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13522672/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148851352","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Participant Experience, Acceptability and Feasibility of Virtual and Digitally Supported Visits in a Phase IIa COPD Trial.","authors":"Renate Kat, Wytske van der Veen, Yoran H Gerritsma, Marika T Leving, William Dott, Olga Elizarova, Rod Hughes, Caroline Jonstrand, Cecilia Kristensson, Andrzej Nowojewski, Alex Wheal, Janwillem W H Kocks","doi":"10.1177/23743735261461849","DOIUrl":"10.1177/23743735261461849","url":null,"abstract":"<p><p>Understanding participant experience is crucial for improving participant satisfaction, retention, data quality, and clinical trial efficiency; particularly when incorporating digital patient solutions and virtual elements. CRESCENDO, an international phase-II chronic obstructive pulmonary disease (COPD) trial, incorporated daily at-home digital measurements, remote coached spirometry, and a virtual visit to evaluate feasibility and participant acceptance. This study explored participant experience in CRESCENDO through semi-structured interviews (n=21) and a Study Participant Feedback Questionnaire (SPFQ, n=81), conducted across Bulgaria, Canada, Poland, Spain, UK, and USA. Interview data were analysed thematically. Participants were generally satisfied and found digital and virtual elements user-friendly, although technical issues caused frustration. When functioning properly, participants considered remote and in-person spirometry coaching comparable. Nonetheless, participants preferred in-person visits due to positive interactions with trial staff, which increased satisfaction and feeling of appreciation. High concordance between interview and SPFQ data supported the validity of qualitative interviews for assessing participant experience. The study highlights the potential of digital elements and offers practical recommendations, like providing options for in-person and virtual visits, to enhance satisfaction and engagement. This qualitative sub-study was conducted within the CRESCENDO trial (https://clinicaltrials.gov reference: NCT05492877).</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261461849"},"PeriodicalIF":2.0,"publicationDate":"2026-08-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13519228/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148841252","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient and Family Experience in the Pediatric Emergency Department: Association With Real-Time Crowding Monitoring and Operational Factors.","authors":"Rebecca C Spegele, Adam A Vukovic, Michael C Ponti-Zins, Yin Zhang, Elena Duma, Nathan Timm, Benjamin Kerrey, Kevin M Overmann","doi":"10.1177/23743735261481135","DOIUrl":"10.1177/23743735261481135","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261481135"},"PeriodicalIF":2.0,"publicationDate":"2026-08-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13498782/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148799313","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effects of On-Site Supportive Communication Training in Oncology: A Multicenter Randomized Trial Assessing >3500 Patient Experiences.","authors":"Kerstin Kiis Antonsen, Signe Timm, Johanne Dam Lyhne, Anna Thit Johnsen, Laurids Østergaard Poulsen, Lea Lund, Lars Henrik Jensen","doi":"10.1177/23743735261480578","DOIUrl":"10.1177/23743735261480578","url":null,"abstract":"<p><p>To evaluate the effect of On-site Supportive Communication Training (On-site SCT) on patient-rated doctor communication in outpatient oncology. In this Danish multicenter randomized trial, 89 oncology doctors were assigned to On-site SCT or usual practice. The intervention included three training days over 3-4 months with real-time observation, structured reflection, and individualized feedback integrated into routine consultations. Patients attending baseline and follow-up consultations completed the validated 14-item Communication Assessment Tool (CAT). The proportion of patients rating doctor communication as \"excellent\" was the prespecified primary outcome. Of 3,989 patients, 3,562 completed the questionnaire. Core interpersonal behaviors were rated highly (68-73% \"excellent\"), while active engagement behaviors - eliciting patient ideas (69%), checking understanding (61%), and encouraging questions (58%) - were lower. No significant differences were observed between groups. On-site SCT did not improve patient-rated communication but identified priorities for future communication training. High baseline communication ratings and resulting ceiling effects may have limited detection of intervention effects. The study provides a large multicenter benchmark for PREMs and underscores methodological challenges in evaluating communication interventions.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261480578"},"PeriodicalIF":2.0,"publicationDate":"2026-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13494297/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148799251","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Challenges and Lived Realities of Patients With Chronic Kidney Disease in Ghana: A Qualitative Inquiry.","authors":"Alorkorbu Vinolia, Evans Appiah Osei, Edward Obeng Amoah, Emuejevoke Fuafugo, Nancy Yaa Durowaa, Mbanefo Onyinye, Lillian Agyemang, Zainab Seidu","doi":"10.1177/23743735261475174","DOIUrl":"10.1177/23743735261475174","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Aim: </strong>To explore the lived experiences and challenges of patients with CKD and ESRD receiving hemodialysis in Ghana.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261475174"},"PeriodicalIF":2.0,"publicationDate":"2026-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13438212/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148680389","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Parent Experiences During Child Hospitalization in an International Cohort: A Qualitative Descriptive Study Guided by Family-Centered Care Principles and the Socio-Ecological Model.","authors":"Christine R Hodgson, Renee R Mehra, Amy J Lisanti, Caryl Gay, Julianne Ballard, Jennifer Rienks, Michael Clay, Thomas J Hoffmann, Samantha Gille, Maram Kiran, Erlin Lopez Rodas, Michelle Pavlik, Sufiya Manju, Nitya Turaga, Linda S Franck","doi":"10.1177/23743735261474418","DOIUrl":"10.1177/23743735261474418","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261474418"},"PeriodicalIF":2.0,"publicationDate":"2026-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13438240/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148680383","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Carrying Strength and Silence: A Patient Perspective on Postpartum Mood in Black Motherhood.","authors":"Amber Nelson-Fuller","doi":"10.1177/23743735261474416","DOIUrl":"10.1177/23743735261474416","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261474416"},"PeriodicalIF":2.0,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13428819/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148664527","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Quality Improvement Study on Patient-Perceived Participation in Care Decisions at a Comprehensive Stroke Center Using a Standardized Patient Information Tool.","authors":"Ovais Inamullah, London Hendrix, Zachary Jones","doi":"10.1177/23743735261474414","DOIUrl":"10.1177/23743735261474414","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261474414"},"PeriodicalIF":2.0,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13428823/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148664570","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}