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The Patient's Lived Experience: A Phenomenological Study On Factors Influencing Tuberculosis Treatment Outcomes In Medan, Indonesia, Erida Novriani, Urip Harahap, Khairunnisa Khairunnisa, Wiryanto Wiryanto 2026 Doctor in Pharmaceutical Sciences Program, Faculty of Pharmacy, Universitas Sumatera Utara, Medan 20155, Indonesia

The Patient's Lived Experience: A Phenomenological Study On Factors Influencing Tuberculosis Treatment Outcomes In Medan, Indonesia, Erida Novriani, Urip Harahap, Khairunnisa Khairunnisa, Wiryanto Wiryanto

Patient Experience Journal

This qualitative phenomenological study was conducted to analyze the factors influencing tuberculosis (TB) treatment outcomes from the patient's perspective in Medan, North Sumatra, Indonesia. The objective was to uncover the nuanced human factors shaping the patient's treatment journey, moving beyond a sole reliance on statistics and quantitative methods. The research was conducted across all 41 Primary Health Centers (PHCs) in Medan. Through a purposive sampling strategy, data was collected from 22 TB patients via in-depth interviews until data saturation was achieved. The collected data was analyzed using thematic, narrative, and phenomenological approaches to interpret the detailed lived experiences of the …


Applying A Patient Journey Mapping Approach To Understand Maternal Care Patient Journeys: A Pilot Study, Nicole Hicks, Kristin Tully, Christopher Goodier, Sreenath Chalil Madathil, Ayaba Logan, Myrtede Alfred 2026 Department of Mechanical and Industrial Engineering, University of Toronto

Applying A Patient Journey Mapping Approach To Understand Maternal Care Patient Journeys: A Pilot Study, Nicole Hicks, Kristin Tully, Christopher Goodier, Sreenath Chalil Madathil, Ayaba Logan, Myrtede Alfred

Patient Experience Journal

Introduction: In the United States, giving birth is the most common cause of hospitalization. Maternal care frequently represents birthing people's first experiences of prolonged interactions with the healthcare system. However, the structure of services is often fragmented and misaligned with individuals' needs, particularly for Black birthing people. Documenting birthing people's experiences during pregnancy and postpartum allows for identification of practices working well and opportunities to improve patient-centered maternal care. Methods: The mixed-methods study was conducted in the southeastern United States and used patient journey mapping(PJM) to document experiences of patients receiving maternal care at a large academic hospital …


No One-Size-Fits-All: Patient Perspectives Of Key Factors Influencing Their Inpatient Rehabilitation Experience, Mirline Milien, Megan Bewernitz, Katherine Stallings, Mary Ellen Young 2026 Brooks Rehabilitation Hospital, United States

No One-Size-Fits-All: Patient Perspectives Of Key Factors Influencing Their Inpatient Rehabilitation Experience, Mirline Milien, Megan Bewernitz, Katherine Stallings, Mary Ellen Young

Patient Experience Journal

Although patient experience in healthcare settings has historically been an ambiguous concept, it has received increasing recognition as a measure of healthcare quality. Despite this growing recognition and efforts to define patient experience, few studies have explored patient perspectives on the key factors driving this quality indicator. This study aimed to explore the core elements patients view as influencing their experiences in the inpatient rehabilitation setting. This was a single-visit, cross-sectional qualitative interview study. Thirteen patients with diverse diagnoses who received at least one week of rehabilitation services were recruited from a single inpatient rehabilitation facility. Purposive sampling was employed …


Expanding Family Participation In Inpatient Rounds Through Remote Access: A Feasibility Study Using Automated Messaging, Praveen Meka, Susan Ayers, Jayme Wilder 2026 Dana-Farber Cancer Institute, Boston, MA1B13 450 Brookline Ave, Boston MA 02215, US, Brigham and Womens Hospital, 75 Francis Street, Boston MA 02215, US; AND Harvard Medical School, 25 Shattuck Street, Boston MA 02115, US

Expanding Family Participation In Inpatient Rounds Through Remote Access: A Feasibility Study Using Automated Messaging, Praveen Meka, Susan Ayers, Jayme Wilder

Patient Experience Journal

Patient representatives (PR) often wish to be part of the care of their loved ones when hospitalized. However patients are frequently alone during morning bedside rounds. A feasibility study was conducted at a large New England Academic Center to evaluate whether short messaging service (SMS) notifications of morning round times with ability to conference-in could improve remote PR participation in inpatient rounds and assess its impact on communication, acceptability, and care experience. After IRB approval, 17 patients were recruited, resulting in 61 bedside encounters. PRs received daily SMS reminders with scheduled round times and joining instructions; care teams received daily …


The Implementation Of Family-Centered Care And Family Satisfaction In Caring For Children With Cancer, Lenny Gannika, Mulyadi Mulyadi, Jeanette Irene Christie Manoppo 2026 School of Nursing, Faculty of Medicine, Sam Ratulangi University, Manado, Indonesia

The Implementation Of Family-Centered Care And Family Satisfaction In Caring For Children With Cancer, Lenny Gannika, Mulyadi Mulyadi, Jeanette Irene Christie Manoppo

Patient Experience Journal

Background: Family-Centered Care (FCC) is an approach that involves families actively in their children's care by emphasizing respect, collaboration, and support. The goal is to increase family satisfaction with the care of children with cancer. FCC covers six subscales: general satisfaction, information, family inclusion, communication, technical skills, and emotional needs. Objective: This study aims to analyze the relationship between implementing FCC and family satisfaction when caring for children with cancer. Methods: A cross-sectional quantitative study was conducted at the Estella Children's Cancer Center in Manado, Indonesia, from June to October 2024. Parents of hospitalized children with cancer were selected for …


Using Artificial Intelligence To Enhance Patient Comprehension And Risk Perception Of Pathology Reports: Findings From A Survey Of Patients And Pathologists, Jordyn Franco, Osee Koulong Leussa, Amer K. Abu Alfa, Mark K. Fung 2026 Brown University, Department of Family Medicine

Using Artificial Intelligence To Enhance Patient Comprehension And Risk Perception Of Pathology Reports: Findings From A Survey Of Patients And Pathologists, Jordyn Franco, Osee Koulong Leussa, Amer K. Abu Alfa, Mark K. Fung

Patient Experience Journal

Context: Electronic health records (EHRs) provide patients with direct access to their pathology reports, often before physician consultation. However, the complexity of medical terminology can lead to misinterpretation and anxiety. Artificial intelligence (AI), particularly large language models such as ChatGPT, may improve patient comprehension by simplifying medical language. Objective: This study evaluates ChatGPT's ability to enhance patient understanding and risk perception of pathology reports by generating patient-friendly explanations and assigning a numerical concern level. Pathologists assessed the accuracy of AI-generated summaries. Design: A publicly available colonoscopy pathology report was analyzed using ChatGPT, which produced a simplified summary and concern score. …


Improving Patients' Experience Through Nurturing Care For Patients Undergoing Kidney Biopsies: A Feedback Survey, Molefe Rapalai, Mahmoud Elshehawy, Johann Nicholas, Patrick Anthony Ball, Hana Morrissey 2026 Specialty Dr, Renal Medicine, Royal Shrewsbury Hospital, West Midlands

Improving Patients' Experience Through Nurturing Care For Patients Undergoing Kidney Biopsies: A Feedback Survey, Molefe Rapalai, Mahmoud Elshehawy, Johann Nicholas, Patrick Anthony Ball, Hana Morrissey

Patient Experience Journal

Background: Renal biopsies are a key tool in diagnosing kidney diseases, providing histopathological insights for personalised treatment plans. Despite their clinical value, little is explored about how patients experience this invasive procedure. Understanding these experiences is important for improving care quality, safety, and ensuring the process is as patient friendly as possible. There is also a lack of research capturing patient experience feedback on renal biopsies, making studies like this essential for guiding service improvement initiatives. Method: Observational study, May 2022 to June 2024. Eighty-six percutaneous renal biopsies performed. Fifty eligible patients invited to complete the Kidney Biopsy Patient Experience …


Capturing Patient-Centered Quality Of Life: Usability And Initial Validation Of The Pediatric Patient-Generated Index Following Esophageal Atresia Repair, Zanib Nafees, Julia Ferreira, Elena Guadagno, Nikki Ow, Nancy Mayo, Jean-Martin Laberge, Dan Poenaru 2026 Faculty of Medicine and Health Sciences, McGill University, Montreal, Quebec, Canada

Capturing Patient-Centered Quality Of Life: Usability And Initial Validation Of The Pediatric Patient-Generated Index Following Esophageal Atresia Repair, Zanib Nafees, Julia Ferreira, Elena Guadagno, Nikki Ow, Nancy Mayo, Jean-Martin Laberge, Dan Poenaru

Patient Experience Journal

The Patient-Generated Index (PGI) is an individualized measure that allows patients to define the domains most important to their quality of life (QoL). This study evaluates the usability and preliminary validity of the pediatric Patient-Generated Index (pPGI) in children who previously underwent esophageal atresia (EA) repair. We conducted a mixed-methods study including the pPGI, EuroQol-5D-Youth (EQ-5D-Y), and PROMIS Life Satisfaction Short Form-8a. Children aged 7–17 years completed self-reports, while parents served as proxies for younger children. Cognitive interviews explored how children understood and completed the pPGI, and clinician interviews assessed clinical usability. Among 25 participants, the pPGI generated 104 text …


Preventing Delirium After Surgery: A Qualitative Study Of Patients, Caregivers, And Providers, Jennifer O'Brien, Maria Cruz, Heather Dyck, Hassan Yassin, Una Goncin, Lei Xia, Huma Aftab, Lilian Thorpe, Peter Hedlin 2026 Department of Anesthesiology, College of Medicine, University of Saskatchewan, Saskatoon, SK, Canada

Preventing Delirium After Surgery: A Qualitative Study Of Patients, Caregivers, And Providers, Jennifer O'Brien, Maria Cruz, Heather Dyck, Hassan Yassin, Una Goncin, Lei Xia, Huma Aftab, Lilian Thorpe, Peter Hedlin

Patient Experience Journal

Post-operative delirium is the most common complication in older adults following surgery. Symptoms include agitation, difficulty focusing, sluggishness, hallucinations, slurred speech, restlessness, rapid mood swings, and uncooperative or aggressive behaviour. It can result in longer hospital stays, increased mortality, loss of functional independence, increased need for a higher level of care post-surgery, and an increased risk of readmission to hospital. We aimed to understand and describe the experiences of patients, families, and healthcare providers with postoperative delirium, and to identify targeted initiatives to support patient and family centered care for high-risk patients. We conducted a qualitative descriptive study using interviews …


Beliefs Regarding Patient Experience In The Emergency Department Among Individuals With Sickle Cell Disease, Elizabeth A. Ibiloye, Gloria N. Odonkor, Ayobami A. Aiyeolemi, Jamie C. Barner, Carolyn M. Brown, Hyeun Ah Kang, Benita A. Bamgbade 2026 Health Outcomes Division, College of Pharmacy, The University of Texas at Austin, Austin, TX, US

Beliefs Regarding Patient Experience In The Emergency Department Among Individuals With Sickle Cell Disease, Elizabeth A. Ibiloye, Gloria N. Odonkor, Ayobami A. Aiyeolemi, Jamie C. Barner, Carolyn M. Brown, Hyeun Ah Kang, Benita A. Bamgbade

Patient Experience Journal

Individuals with sickle cell disease (SCD) frequently experience intense, unanticipated pain episodes known as vaso-occlusive events (VOEs), which often require emergency department (ED) treatment. However, they often report suboptimal experiences in the ED. Using the Theory of Planned Behavior (TPB), this study aimed to elicit salient beliefs regarding SCD patient experience in the ED. Three virtual focus group sessions were conducted with individuals with SCD recruited through a Texas SCD Association and Rare Patient Voice. Nine open-ended questions were used to elicit participants' behavioral, normative, and control beliefs regarding ED use when experiencing VOEs. Qualitative analysis was performed using a …


The Voices I Never Heard: Reflections From A Public Health Advocate On Representation, Silence, And Struggle, Araya Gautam 2026 Queen Margaret University, Edinburgh, Scotland

The Voices I Never Heard: Reflections From A Public Health Advocate On Representation, Silence, And Struggle, Araya Gautam

Patient Experience Journal

Representation of ethnic minorities among trial participants in the UK is poor. It is true that the need for diversity and inclusive language is important in research, but the practicality of making this a reality for patients from under-represented groups has not generally been the case. As a patient advocate, I have been a participant in clinical trial reviews and advisory boards during the past three years and have engaged in a national-level conversation about patient voice and equity. I draw connections between structured frameworks for patient and public involvement (PPI) in the UK and the more informal, community-based caregiving …


The Quiet End Of The Visit, Avinav Biswas 2026 School of Natural Sciences, University of California, Merced, Merced, CA, USA

The Quiet End Of The Visit, Avinav Biswas

Patient Experience Journal

Reassuring language is a common and often well-intentioned feature of clinical encounters, frequently used to convey clinical confidence and bring visits to a close. This personal narrative reflects on an observed outpatient encounter during a physician shadowing experience in which reassurance appeared to function not only as comfort, but also as an implicit signal of conversational closure. From the perspective of a student observer, the piece describes a moment of patient hesitation that arose after reassurance was offered, then quietly disappeared as the visit concluded. Although the encounter was clinically appropriate and efficient, the unspoken pause highlighted how uncertainty can …


Navigating Medical Ambiguity: A Patient's Perspective On Communication, Timing, And Risk, J. Hansen 2026 Patient, Canada

Navigating Medical Ambiguity: A Patient's Perspective On Communication, Timing, And Risk, J. Hansen

Patient Experience Journal

This essay recounts the experience of navigating re-vaccination decisions after an initial diagnosis of vaccine-associated myocarditis. A diagnosis later contested by other specialists. It is not a tale of medical error, but of diagnostic ambiguity and divergent clinical reasoning. My intent is to show how, in the absence of consensus, a patient was compelled to assume a central role in adjudicating between competing medical narratives. Recommendations are offered to make medical advice more available to patients and bridge a growing gap between medicine and the public.


Human Experience, The Boarding Crisis, And Moral Injury-A Call To Action, Thom Mayer, Wendy Dean 2026 Duke University AND George Washington University School of Medicine

Human Experience, The Boarding Crisis, And Moral Injury-A Call To Action, Thom Mayer, Wendy Dean

Patient Experience Journal

Patient experience has evolved to a broader definition of human experience, including workforce experience, and community experience. Hospital boarding is a common, pervasive problem facing healthcare, which threatens all levels of human experience, from patient experience, to workforce experience (moral injury and burnout in healthcare professionals), and community experience (delayed and denied access to care for patients, Emergency Medical Services, and even interhospital transfers. Effective system leadership across the systems and processes of healthcare, as well as stakeholder and boundary management, will be essential to deliver acceptable human experience, in addition to solutions to smooth surgical flow, improve discharge systems, …


Human Experience: A Catalyst For Global Connection, Jason A. Wolf 2026 The Beryl Institute, United States

Human Experience: A Catalyst For Global Connection, Jason A. Wolf

Patient Experience Journal

As I think about the state of play in our world today, I find we have two choices in how we react. One is with a sense of despair driven by the intentional efforts to disconnect humanity being perpetuated by some. The other, with a sense of hope, that even in the face of these forces, there are those that strive relentlessly to foster connection and opportunity. I find the path forward in holding the tension of pragmatic idealism – that we can dream, with big and noble goals, while recognizing our path forward must be grounded in practical and …


Raising The Barb: Evaluation Of Phenobarbital Use For Alcohol Withdrawal In Patients On General Medicine Floors, Seth Arakawa, Jason Frederick, Anthony Le 2026 Providence

Raising The Barb: Evaluation Of Phenobarbital Use For Alcohol Withdrawal In Patients On General Medicine Floors, Seth Arakawa, Jason Frederick, Anthony Le

Books, Presentations, Posters, Etc.

Abstract: Alcohol withdrawal syndrome (AWS) can present as a spectrum of symptoms such as a mild headache, gastrointestinal issues, and diaphoresis. However, if not treated properly, it can progress to severe hallucinations, seizures, or delirium tremens. Current guidelines from the American Society of Addiction Medicine (ASAM) recommend benzodiazepines as first line agents for alcohol withdrawal with phenobarbital recommended as an adjunct agent or replacement to benzodiazepines by providers who are familiar with its use. Although most evidence supporting phenobarbital in AWS comes from critical care settings, emerging data suggest it may also be safe and effective in general ward patients. …


An Exploration Of Drivers Of Sepsis Outcomes In Racial And Ethnic Minority Populations, Matthew Moritz, Omar Pandhair, Shelley Schoepflin Sanders 2026 Providence

An Exploration Of Drivers Of Sepsis Outcomes In Racial And Ethnic Minority Populations, Matthew Moritz, Omar Pandhair, Shelley Schoepflin Sanders

Books, Presentations, Posters, Etc.

RATIONALE: Race and ethnicity affect sepsis outcomes in unclear ways. Existing data is conflicting, with some studies suggesting minority patients do worse, while others did not show a difference in outcomes between these groups. We sought to investigate whether inequalities exist in sepsis outcomes for different racial and ethnic groups in our large hospital system and to characterize how they may manifest. METHODS: We performed a retrospective cohort study of adults diagnosed with sepsis and discharged from any of Providence’s 52 hospitals between January 1 and December 31, 2023. We grouped patients into ten different race/ethnicity groups including White, Black, …


A Rare And Fatal Complication Of Herpes Simplex Virus (Hsv) Infection, Natalie Bolton, Jeffrey Youker 2026 Providence

A Rare And Fatal Complication Of Herpes Simplex Virus (Hsv) Infection, Natalie Bolton, Jeffrey Youker

Books, Presentations, Posters, Etc.

Introduction: Hemophagocytic Lymphohistiocytosis (HLH) is a rare syndrome characterized by overactive immune activation, cytokine storm, and uncontrolled hemophagocytosis. Primary HLH is familial and most often seen in infants, whereas secondary HLH occurs more frequently in adults and is triggered by infections, malignancies, or autoimmune disorders. Clinically, secondary HLH often mimics sepsis but fails to respond to standard therapies, contributing to delayed diagnosis and treatment. Without timely intervention, HLH can result in extensive tissue damage, multiorgan failure, and death. In rare cases, central nervous system (CNS) involvement may occur, manifesting as histiocytic infiltration that can be misinterpreted as malignancy or infection. …


Behavior Change In A Young Woman: The Secret Lies In The Ovarian Tumor, Matthew Moritz, MD, Linh Tang Taylor, MD, Olivia L Snir, Stephanie Griffith, MD 2026 Providence

Behavior Change In A Young Woman: The Secret Lies In The Ovarian Tumor, Matthew Moritz, Md, Linh Tang Taylor, Md, Olivia L Snir, Stephanie Griffith, Md

Books, Presentations, Posters, Etc.

Introduction: Autoimmune encephalitis is a rare immune-mediated disorder characterized by neuropsychiatric symptoms. Anti-NMDA receptor (NMDA-R) encephalitis, the most common subtype, affects approximately 1 in 1.5 million people annually. We present a case of a young female with new-onset hallucinations, behavioral changes, and personality disturbance. Case Presentation: A 32-year-old female with remote methamphetamine use and recent trauma presented with acute mental status changes, aggression, emotional lability, and hallucinations. Vitals were normal; on exam she appeared confused, agitated, and displayed unusual behavior, including hallucinations. Initial evaluation revealed mild leukocytosis, but otherwise normal urine drug screen, chest radiograph, TSH, ANA, VDRL, heavy metal …


Cloudy Consequences: Exploring Vaping-Induced Pulmonary Alveolar Proteinosis, Jennifer Wong, DO, Omar Pandhair, Abby Lindseth, MD, Cameron Miles Long, MD 2026 Providence

Cloudy Consequences: Exploring Vaping-Induced Pulmonary Alveolar Proteinosis, Jennifer Wong, Do, Omar Pandhair, Abby Lindseth, Md, Cameron Miles Long, Md

Books, Presentations, Posters, Etc.

Abstract: Pulmonary alveolar proteinosis (PAP) is a rare disease caused by abnormal accumulation of surfactant within alveoli. Vaping of electronic cigarette smoke has recently been described as a cause of pulmonary alveolar proteinosis in two case reports. We add to this rare literature by describing a case of pulmonary alveolar proteinosis induced from vaping in a young woman with confirmed granulocyte/macrophage colony-stimulating factor (GM-CSF) autoantibodies as the proposed mechanism. Introduction: Pulmonary alveolar proteinosis (PAP) results from inappropriate accumulation of pulmonary alveolar surfactant due to dysregulated granulocyte/ macrophage colony-stimulating factor (GM-CSF) signaling.1 Its incidence is approximately 0.2 cases per million with …


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