Medicine and Health Sciences Commons^™

Exploring Lived Experiences To Gain Insight Into The Support Needs Of People Following Stoma Surgery: A Qualitative Study, Julia Kittscha, Val Wilson, Vida Bliokas, Greg Fairbrother

Patient Experience Journal

Aim To describe the supports that are important to people in the early weeks after stoma surgery and explore participants' thoughts and feelings about these supports. Design A consumer-researcher co-design approach was used to design and undertake a qualitative patient interview study among people who have had stoma surgery. People who had an existing stoma were trained as co-researchers to work alongside the clinician researcher. Method Semi-structured interviews were conducted with consenting participants 6-8 weeks after stoma surgery. Thematic data analysis was conducted by the research team using Braun, Clarke\citealpbib1 six step-phase reflexive thematic analysis, members of the team initially …

What Matters To Patients When Preparing For A Colonoscopy: A Mixed-Methods Study Of Needs And Worry, Louise Bang Grode, Anne Højager Nielsen, Anette Viftrup, Lene Lehmkuhl, Hejdi Gamst-Jensen, Brigitta R Villumsen, Malene Kaas Larsen, Lone Dragnes Brix

Patient Experience Journal

Background: Colonoscopy is essential for diagnosing, treating, and preventing colorectal cancer, and many patients experience considerable procedure worry. Limited evidence exists on which aspects of preparation and the procedure matter most to patients or how these relate to their Degree-of-Worry (DOW). Understanding these factors is important for improving patient readiness and care quality. This study explores what matters to patients when preparing for colonoscopy, including how they prepare, their perceived readiness, and their DOW. Method: A flash-mob study with a convergent mixed methods was conducted, collecting quantitative and qualitative data simultaneously across multiple sites. Results: Among 203 patients completing the …

What Patients Wear Matters: Evidence On Adaptive Hospital Wear, Dignity, And Care Experience, Akhilesh Kumar, Sukhvir Singh

Patient Experience Journal

Traditional hospital gowns can compromise dignity, comfort, and care efficiency by prioritizing procedural access over the lived experience of hospitalization. This narrative review synthesizes interdisciplinary literature published between 2000 and 2025 across patient experience research, nursing, medical textiles, apparel design, and disability studies, with searches conducted in Scopus, Web of Science, and Google Scholar. Across settings, evidence indicates that patient-centered hospital wear—using breathable and antimicrobial textiles, ergonomic closure systems (eg, hook-and-loop, magnetic snaps, modular access flaps), and inclusive sizing—can reduce unwanted exposure, improve perceived dignity and autonomy, simplify dressing for patients and caregivers, and support clinical access when aligned with …

Unlocking Healthcare Navigation: Key Tasks, Challenges, And Facilitators – A Narrative Review, John Zaki

Patient Experience Journal

Background: Healthcare is a complex and costly system that often creates distressing experiences for individuals managing their own or their family's health. Introduced in the United States around 1990 to reduce healthcare disparities, healthcare navigation aims to support patients and caregivers in navigating healthcare systems effectively and efficiently. This review explores the scope and importance of healthcare navigation services across clinical settings. Methods: This narrative review was informed by a broader literature search conducted as part of the author's thesis work, which included database searches, grey literature exploration, and manual screening of key medical journals. However, all studies that met …

Navigating Emergency Care: Understanding Older Adults' Experiences At The Kingston Health Sciences Centre, Nilany Thanabalasinham, Susan A. Bartels, Melanie Walker

Patient Experience Journal

Objectives: Older adults (65+) in Ontario have the highest emergency department (ED) visit rates, yet often face delayed care and unmet healthcare needs. This study investigates how older adults perceive and navigate their ED care experiences at the Kingston Health Sciences Centre (KHSC), compared to younger adults and identifies factors driving their positive and negative care experiences. Methods: A secondary mixed-methods analysis was conducted using cross-sectional data on ED care experiences at the KHSC. Qualitative data included anonymously recorded micronarratives describing participants' ED experiences. Quantitative data included patients' numerical interpretations of their shared experiences through sensemaking triad questions. Quantitative descriptive …

Partnering With Patients: Perspectives Of Doctors, Nurses, And Managers Regarding Patient Participation And Feedback In Hospital Settings In Jamaica, Camelia Thompson, Desmalee Holder Nevins, Dawn Walters, Cameal Chin-Bailey, Elon Thompson, Minerva Thame, Kenneth James

Patient Experience Journal

This study assesses the perspective of doctors and nurses regarding participation of patients in care delivery and explores perspectives of managers on patient feedback mechanisms in two Jamaican hospitals. A mixed-methods convergent parallel design study was employed. The quantitative component involved a cross-sectional survey of 328 doctors and nurses, selected through stratified random sampling, using a self-administered questionnaire assessing patient participation. Qualitative data were collected through semi-structured interviews with 17 senior managers, which were analyzed thematically. Quantitative and qualitative findings were integrated during interpretation. The majority of respondents (90.8%) reported that they very often or always respected and encouraged patient …

Understanding Patient And Family Experience In Pediatric Hemato-Oncology: A Cross-Sectional Study From Morocco, Boujemaa El Marnissi, Sanae Bouramdane, Moussa Benboubker, Fouad Abbas, Salma Chahid, Jalal Dahmani, Khalid Moubtahij, Kenza Elmkadem, Sarra Benmiloud

Patient Experience Journal

Background. Patient- and family-reported experience is a vital indicator of healthcare quality, particularly in pediatric hematology-oncology. This study assessed patient- and family-reported experience and identified its sociodemographic, clinical, and organizational determinants in a newly established pediatric hemato-oncology department of a tertiary university hospital in Morocco. Methods. A cross-sectional survey was conducted between November 2023 and January 2024. Experience was assessed using a validated multidimensional questionnaire covering reception and access, information and communication, human and relational aspects of care, therapeutic management and pain control, accommodation conditions, and logistical and administrative processes. Sociodemographic and clinical variables were collected; bivariate analyses and multivariate …

Challenges Of Family Members Of Admitted Patients In Relationship With Medical Staff In Kurdistan Region: Cross-Sectional Study, Khalid Khudhur Faris, Zuhair Rushdi Mustafa, Hadi Haji Hussain, Ibrahim Baker Khudida, Deldar Morad Abdulah

Patient Experience Journal

Families often play a significant role in advocating for and supporting their patients during illness or hospitalization. Understanding the challenges between family members of patients and medical staff is crucial for improving communication, patient care, and the overall healthcare experience. This study aimed to investigate and understand the challenges and difficulties experienced by family members when dealing with the medical staff. This cross-sectional study conducted at a local teaching hospital in Kurdistan Region. A total of 400 family members of admitted patients from various medical departments were included in this study. Companions reported generally positive interactions with healthcare providers (HCPs). …

Parallel Realities: A Narrative Review Of Differences Between Patients And Their Care Providers, Umair Majid, Hazeema Haq, Ziyad Yahmad

Patient Experience Journal

Differences in how patients and healthcare providers perceive, experience, and deliver care can undermine patient-centered care and health outcomes. Yet, few syntheses have examined these divergences as a primary focus. This narrative review aimed to identify and synthesize evidence on the differences between patients and their providers in terms of priorities, expectations, and experiences of care, and to explore how these differences can potentially influence relationships and outcomes. A database search was conducted to identify English-language studies published from January 2019 to January 2025 that included both patients and providers in the same sample and compared their perspectives. Data from …

Exploring The Lived Experiences Of Familial Caregivers To Individuals With Prader-Willi Syndrome: The Impact Of Caregiver Burden, Louisa Williams, Eden Morley

Patient Experience Journal

Caregiver burden (CB) is an under-researched topic among familial caregivers (parents, siblings, aunts, uncles and grandparents) supporting someone with Prader-Willi Syndrome (PWS). CB is defined as the physical and mental toll resulting from caring for someone with additional needs, which has not yet been explored in PWS familial caregivers. PWS causes hyperphagia (insatiable hunger) and violent behaviours that can be hard to manage. Research demonstrates primary caregivers have a decreased quality of life and increased mental health (MH) problems, with quantitative literature highlighting the risk of CB. This study aimed to qualitatively highlight the experiences of CB in familial caregivers …

Information Continuity And Experiences Of Mental Healthcare: A Conceptual Framework, Timothy Kariotis, Megan Prictor, Kathleen Gray, Shanton Chang

Patient Experience Journal

Objectives: Information continuity is a key element of continuity of care and service users' experience of care. However, models of continuity of care have not considered how to operationalise information continuity and balance it with service users' privacy concerns. The aim of this paper was to develop a conceptual framework of the information practices that contribute to service users' experience of information continuity in the mental healthcare system. Methods: We undertook a narrative review to identify studies on service users' experiences of mental healthcare and analysed them using a thematic synthesis method to identify the information practices of care professionals …

Health Information For Patients And Families: Sources, Data Types, And Tools For Evaluating Accessibility, Preeti Pandey, Richard I. Zraick, Vinaya Manchaiah

Patient Experience Journal

This review summarizes key sources and formats of health information for patients and families, and outlines tools used to evaluate their accessibility. Health information appears across online and offline platforms in formats such as text, images, and video. Evaluation tools assess dimensions like readability, accuracy, quality, suitability, and actionability, though they vary in validity and scope. This paper offers guidance for healthcare professionals and researchers aiming to improve the accessibility and effectiveness of patient-facing health materials.

When Decision-Making Styles Do Not Predict Communication Preferences: Rethinking Personalization In Healthcare Experience, Victoria Sze Min Ekstrom

Patient Experience Journal

Background: Healthcare systems increasingly attempt to personalize risk communication by matching messages to patients' decision-making styles. This approach is resource intensive, yet evidence that it improves patient experience or decision quality remains limited. Methods: We conducted a cross-cultural experimental study with adults from the UK (n=330, recruited via Prolific) and Singapore (n=220, recruited via professional networks). Participants viewed three healthcare scenarios with risks of 1%, 10%, and 20%, presented in either positive (``99% no complications'') or negative (``1% complications'') frames displayed side-by-side in randomized order. Decision-making styles were assessed using the Control Preferences Scale, categorizing participants as information-seeking, shared decision-making, …

Reflections On Factors That Led To A Dehydration Hospitalization: Lived Experience To Inform Systems Change For Nursing Home Residents, Lucas Kandia, Jodi Dunmeyer Stookey

Patient Experience Journal

This personal narrative describes a family's journey through a preventable dehydration crisis during the COVID-19 pandemic. When a 93-year-old nursing home resident tested positive for COVID-19, her family prepared for the worst. Instead, she nearly died from severe dehydration, not the virus, and was hospitalized for hypovolemic shock, only to be discharged four and a half days later, still COVID-positive, having recovered with rehydration alone. Medical documentation reveals deterioration from inadequate oral intake (300 mL per day) to pre-shock hypotension to frank shock (72/56 mmHg at 17:20), while oxygen saturation remained normal throughout. The admission diagnosis hierarchy (Acute Kidney Injury, …

15 October 2021: Living With The Consequences Of A Cardiac Event — A Patient Perspective, Bruce H. Knox

Patient Experience Journal

This first-person narrative explores the long-term consequences of a rare but catastrophic complication during a premature ventricular contraction (PVC) ablation, resulting in left ventricular rupture, acute cardiac tamponade, and emergency open-heart surgery. While the surgical intervention was life-saving, the subsequent years were marked by profound changes in autonomic function, multisystem instability, and a sustained alteration in quality of life. The account reflects on living with cardiac autonomic vulnerability before the event, the immediate crisis, and the prolonged recovery that followed—characterized not by restoration, but by renegotiation of capacity, identity, and participation. Particular emphasis is placed on the experience of navigating …

The Phantom Fifth Chair Of Patient Experience, Kathy Saldana

Patient Experience Journal

Over the past three years, the author has openly shared her journey as a certified patient experience professional facing triple negative breast cancer. The firsthand gravity of treatment became instantly apparent to her in the chemo chair. Resisting the temptation to crumble under the fear of it, she chose to view treatment as an unwanted yet precious opportunity to study her profession of patient experience from a deeply personal space. Determined not to waste the difficult long-term experience of treatment, she was compelled to write and speak about her convictions regarding the necessity of honoring patients by soliciting, documenting, believing, …

More Than A Buzzword: Why Trauma-Informed Care Needs Widespread Practice, Christine Lee Frost

Patient Experience Journal

This narrative illustrates the personal story about the difficulty of obtaining a diagnosis for endometriosis. As someone who endured a chaotic childhood, I struggled with complex trauma and medical issues for decades without understanding the connection between the two. In this narrative, I make a case for practicing trauma-informed care across the healthcare industry, and detail the statistics that show why it's so vital. While online communities can make ``trauma-informed care'' feel like just another trendy term, it's a concept with an abundance of data to back up the necessity for it. In addition to people living with mental illness, …

Consumer, Customer, Or Patient?... It's All About Context, Sven Gierlinger

Patient Experience Journal

Today's healthcare industry is at a pivotal juncture, navigating the complex intersection of traditional care delivery with rapidly evolving consumer expectations and unprecedented transparency. This personal narrative is intended to provide a nuanced, experience-driven framework for understanding the distinct yet interconnected roles of ``consumer,'' ``customer,'' and ``patient'' - vital for healthcare organizations striving to build trust and loyalty.

Human-Centered Quality: Reframing Quality Around What Matters To People, Vita Steina, Jason Wolf

Patient Experience Journal

Each encounter one has in healthcare is an experience. It is everything someone lives through. It is what they remember and all they perceive. It is their lasting story. When we see the experience one has in healthcare from that lens, then all the components that shape that story are parts of their experience. From this perspective, for as much as the clinical framing of experience as metrics on a survey has seen experience identified as a dimension of quality, we would suggest the opposite. Quality is but one part of the experience someone has in healthcare today. It is …

Affordability: A Critical Issue At The Heart Of Human Experience, Jason A. Wolf

Patient Experience Journal

Affordability is a human experience issue. One that reaches well beyond the edges of healthcare. In our current global economy, rising costs dominate the headlines. They weigh heavily on the pocketbooks of families around the world. Affordability may be no more prevalent than in healthcare. It too is the place where it may have the most significant and lasting impact.If we are willing to think of affordability as an experience issue, we can begin to address the solution in new ways. But it will require untangling years of wiring of how healthcare has operated to rewire what it can be. …

Evaluating A Peer Support Program: Impact On Peer Supporters In A Tertiary Care Children’S Hospital, Lauren R. Anderson, Heather Dekeyser, Sonja I. Ziniel, Michele Loi, Emily Muther, Kami Wolfe Schneider, Christine Waasdorp Hurtado, Jo Vogeli, Jennifer Reese

Journal of Wellness

Introduction: Healthcare workers experience emotional distress following poor patient outcomes, which can negatively impact wellbeing and retention. Peer support programs are an evidence-based approach to mitigating distress through provision of confidential counseling by a trained peer. However, data on impact of participation on peer supporters is limited. We aimed to evaluate and describe the peer supporters’ experience at our tertiary children’s hospital.

Methods: A web-based survey was developed with input from key partners. Content was reviewed via cognitive interviews. The survey was administered to 167 trained peer supporters during the spring of 2022. Demographic comparison data were gathered from an …

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Advanced Practice Provider-Physician Collaboration And Medical Staff Governance: A Framework For Patient Safety, Nicholas Testa, Kaysha Hervey, Cynthia Borum

HCA Healthcare Journal of Medicine

The growth of advanced practice providers (APPs) is occurring in parallel with persistent and projected physician shortages. One important solution and increasingly visible response to these workforce challenges is the expanding role of APPs. Strong physician-APP partnerships can help distribute workload, improve access, and support sustainable practice with the delivery of safe, quality patient care. The future of clinical care will depend on effective APP-physician collaboration grounded in sound credentialing, clearly defined supervision and practice expectations, and robust medical staff monitoring programs. We describe the governance and oversight processes in a large health care system to assess and support APP …

A Conceptual Framework For Clinical Quality Oversight In Telehealth-Enabled Home-Based Urgent Care, Taylor Spencer, Jason P. Williams

HCA Healthcare Journal of Medicine

Background

Home-based urgent care serving frail older adults should aspire to high-quality clinical care with optimal patient outcomes. However, monitoring and ensuring this quality can be challenging. For example, telemedicine and value-based frameworks introduce substantial complexity to clinical quality monitoring.

Purpose

We describe the conceptual framework for a multidimensional quality monitoring program within a national home-based urgent care model.

Framework Description

Medical care was delivered via a multi-state home-based primary, palliative, and urgent care practice serving medically complex Medicare Advantage (MA) populations. Our model of care incorporated distributed clinical and operational teams delivering 24/7 care via telephonic triage, video-enabled encounters, …

Thermal Skin Burns Following Infrared Vein Finder Application In Pediatric Patients: A Report Of 2 Cases And Protocol Revision, Sujata S. Rawlani, Nandini Banad, Jenil Sheth, Raja Narsingrao

HCA Healthcare Journal of Medicine

Background

Peripheral venous cannulation remains a cornerstone of pediatric anesthesia practice. Infrared vein finder devices have gained popularity as aids to improve venous visualization in children with difficult access. However, the thermal hazards associated with certain device types, particularly pocket flashlight-based models, remain underappreciated among clinical staff.

Case Presentation

We report 2 pediatric patients who sustained grade 2 thermal burns at peripheral venous access sites following the use of a pocket flashlight-based infrared vein finder during ophthalmic surgical procedures. The first patient, an 8-month-old girl born at term with appropriate developmental milestones undergoing congenital cataract surgery, developed a ruptured blister …

Time To Antibiotic Administration In The Treatment Of Sepsis: A Retrospective Cohort Study, Dennis Anthony Cardriche, Grayson Carter, Thomas Matese

HCA Healthcare Journal of Medicine

Background

The 2026 Surviving Sepsis Campaign (SSC) guidelines recommend antimicrobial therapy within 1 hour for probable septic shock, while the Centers for Medicare and Medicaid Services (CMS) mandates a 3-hour window. Current literature presents conflicting evidence on whether these universal time thresholds yield a definitive survival benefit. This study aims to evaluate the real-world impact of delayed antibiotic administration on patient mortality and length of stay (LOS).

Methods

A retrospective cohort study was conducted analyzing 62 153 adult encounters with severe sepsis or septic shock at emergency departments (EDs) between December 31, 2023, and December 31, 2025. Time to first …

A Heuristic Tool To Enable Root Cause Analysis Of Safety Events, William D. Porter, Kianca Joseph, Demitria Stafford, Kurt Larson, John Mier, Michelle Butler-Jackson, Musaddiq Waheed

HCA Healthcare Journal of Medicine

Background

Hospitals routinely collect wide-ranging data related to quality, efficiency, and clinical practice. As part of these efforts, patient safety event data are collected, compiled, and analyzed to drive process improvement.

Methods

We present a novel adaptation and application of the Department of Defense Human Factors Analysis and Classification System (HFACS) as a heuristic tool to improve the conduct of root cause analysis (RCA) sessions that follow serious patient safety events. To assess individual knowledge improvement after reviewing the heuristic tool, a 1-page summary (including a graphical image of the tool) was developed and provided to a convenience sample of …

Critical Care Catalyst: The Impact Of Trauma Nurse Leads On Mortality, Patient Outcomes, And Throughput, Danielle Brady, Jessica L. Brady, Hannah Dice, Parker Hu

HCA Healthcare Journal of Medicine

Background

Trauma is the leading cause of years of life lost in the United States. Dedicated trauma nurse leaders (TNLs) coordinate resuscitation and streamline care, but data evaluating their clinical impact at level I trauma centers are limited. We evaluated the association between a newly implemented dedicated TNL program and patient outcomes.

Methods

This single-center, preimplementation and postimplementation observational study at an urban level I trauma center compared adult tier 1 and tier 2 trauma activations from the pre-TNL period (January 1, 2017, through April 30, 2020) with the post-TNL period (May 1, 2020, through December 31, 2023; 8 dedicated …

A Digital Safety Detection And Control System For Proactive Risk Management, Karla Miller, Jennifer Lee Mcalister, Keri Melson, Gita Nadimpalli, Becca Moore, Brett Powell, Kenneth E. Sands, Mary Catherine Harris, Cali Cerami, Shanna Arnold Egloff, Yauheni Solad, Randy Fagin

HCA Healthcare Journal of Medicine

Patient safety remains a defining dimension of health care quality, yet systems rely on retrospective assessment after harm has occurred, limiting visibility into upstream risks, including process failures and near misses. This challenge underscores the need for an approach that unifies fragmented safety activities to support proactive safety risk management. We describe a phased pilot implementation and evaluation framework of a Digital Safety Detection and Control System (DSDC) within a large integrated health care system to operationalize enterprise-wide patient safety. The DSDC integrates governance, human oversight, and digital capabilities across 4 operational phases: detection, triage, investigation, and learning. These capabilities …

Pharmacovigilance As An Act Of Awareness And Mindfulness, Mahima Silas, Hale Z. Toklu

HCA Healthcare Journal of Medicine

The term “pharmacovigilance” defines the activities related to the collection, detection, assessment, monitoring, and prevention of adverse reactions due to pharmaceuticals. While it is often framed as a technical and regulatory discipline, it can also be understood through a more reflective lens as a form of mindfulness practice. At its core, pharmacovigilance requires a way of thinking that closely mirrors mindfulness, including sustained attention, openness to uncertainty, and deep awareness of human experience. Viewing pharmacovigilance in this way reframes it not just as a safety mechanism, but as a thoughtful, patient-centered approach to medicine.